Podcasts about eoe

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Claire Beveridge about EoE and dysphagia. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:49] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:17] Holly introduces today's topic, research on eosinophilic esophagitis (EoE) and dysphagia.   [1:24] Holly introduces and welcomes today's guest, Dr. Claire Beveridge, a gastroenterologist at the Cleveland Clinic. Dr. Beveridge heads the EoE Adult Clinic and the Transition from Pediatric to Adult EoE Clinic.   [1:36] Holly, a speech pathologist, says she is very excited to dive into the research Dr. Beveridge did with EoE and dysphagia. Holly asks Dr. Beveridge to share some of her background.   [1:48] Dr. Beveridge was recruited to the Cleveland Clinic about five years ago to head the EoE Center. She loves the work they have done there.   [1:57] Dr. Beveridge says it's been nice to center everything on their EoE patients and have multidisciplinary care with speech-language pathologists, allergists, dietitians, pulmonologists, and more. It's been a great experience.   [2:15] Dr. Beveridge says the other thing they are really proud of is having a Transition Clinic. It can be tough for patients to transition from pediatric to adult care.   [2:23] Dr. Beveridge says this is something she was inspired to do when she was finishing her training at the University of Pennsylvania, where they had been doing some of that. It was really important to her when she joined Cleveland Clinic.   [2:34] Dr. Beveridge, with her Co-director, Dr. Sophia Patel, helps patients transition from pediatric to adult care.   [2:41] Holly speaks of the challenge of transitioning from pediatric care at a multidisciplinary clinic to adult care.   [3:08] Dr. Beveridge says you can't do any training at Northwestern without loving the esophagus. She did her residency there, got exposed to esophagology, and got to know Dr. Gonsalves and Dr. Hirano really well.   [3:33] Drs. Gonsalves and Hirano are really big names in EoE. Dr. Beveridge was fascinated by the disease. She loved the patients and wanted to help them and make them feel better. It's a burgeoning field.   [3:48] Dr. Beveridge says that it's only in the last few years that we have had FDA-approved medications for it, and that we have been jerry-rigging asthma medications to treat our patients.   [4:03] Dr. Beveridge says it's really exciting to see the treatment options we can offer.   [4:10] Ryan says it's exciting to see how EoE management has changed.   [4:16] Ryan says we see so many patients who are untreated or poorly treated for years, who have restructuring of their esophagus and present with dysphagia, or have strictures and rings leading to food impactions; the long-term effects of untreated EoE.   [4:34] Ryan says it's exciting that now we do have better treatment options for people, right off the bat.   [4:43] Dr. Beveridge conducted some research on EoE and dysphagia and presented a poster at the 2024 Digestive Diseases Week.   [4:51] The poster was titled, "Esophageal Luminal Diameter is Associated with Dysphagia and Eosinophilic Esophagitis: Implications for Endoscopic Dilation Therapy."   [5:11] Dr. Beveridge says dysphagia means issues with swallowing. It's a feeling of something getting stuck or something slowly moving down. There are also subtle symptoms that can happen.   [5:31] Dr. Beveridge says patients who have had EoE for a long time become accustomed to how they swallow. Things a patient may think are normal, like needing water and taking a sip after each bite, are learned accommodating behaviors.   [5:58] Dr. Beveridge says accommodating behaviors are that you're needing to imbibe extra water, you're modifying how you're eating, extra chewing, avoiding pills, avoiding other certain foods, and things like that that can be modifying factors.   [6:19] So, difficulty with swallowing, things getting stuck, slowly moving down, but also keeping in mind some of those modifying behaviors that we may end up using.   [7:23] Dr. Beveridge says her motivation was seeing patients in her clinic who were having persistent symptoms, and getting them into histological remission. The goal of treating your EoE is to get the eosinophils less than 15; close to zero is great.   [7:45] Dr. Beveridge says we have patients who, despite doing their endoscopies and taking biopsies, things look fine; they're still having issues with swallowing. Why is that the case?   [7:58] Dr. Beveridge says in a different research paper she had done, looking at some of the predictors for that, one of them was fibrostenosis. There are also other things that can contribute, like esophageal hypervigilance and a fear of swallowing.   [8:21] If a patient has had a food impaction, it's going to be scary to try to swallow again. Some of it is behavioral, but some of it is structural. At what luminal diameter (the size of the esophagus) is that causing a clinical problem for patients?   [8:45] A normal esophagus is 20 to 24 mm in diameter. Traditionally, around 14 to 16 mm in diameter has been when we say that patients get symptoms or they're feeling the issues with swallowing.   [9:03] Dr. Beveridge says a lot of those studies have never been done specifically for EoE patients.   [9:08] Dr. Beveridge wanted to know, if we exclude cancer, if we exclude acid reflux, and all of these other things, and just look at our EoE patients, what size of the esophagus are we looking at?   [9:20] Dr. Beveridge explained they specifically looked at patients whose histology was under control and then compared those who continued to experience symptoms with those who did not. The goal was to determine the histologic threshold at which patients begin to experience dysphagia.    [9:54] Dr. Beveridge says they saw this threshold at 16 mm (1.6 cm). That's still quite the difference from a normal esophagus of 20 to 24.   [10:08] Dr. Beveridge says our esophagus can definitely handle being smaller, but then, once you get to that 16 mm, for a lot of patients, it really does cause that feeling of things getting stuck or slowly moving down.   [10:20] Holly says what's cool about the retrospective data Dr. Beveridge looked at, and the parameters she placed in the research, is that when a patient goes in for an endoscopy, the doctor can measure and say maybe this is why dysphagia is going on.   [10:48] Holly finds that adult patients with food impactions are scared to eat the same food again. She loves having this data to share with patients and say, let's look at what your esophagus measures at. Let's do a smaller bite. Let's add a dip and liquid.   [11:12] Holly says data can push so much progress. Holly, having multiple chronic illnesses, loves when doctors can say, this is going to be safe. This is the mode that we're going to go with.   [11:30] Dr. Beveridge says in the retrospective study, they were looking at stuff that had already been done. We decided from here to assess patients more prospectively. All of this was based on chart review from when the note said symptoms or no symptoms.   [11:53] Dr. Beveridge says when she started this EoE clinic at the Cleveland Clinic, part of it was to standardize better how we were collecting data from patients to understand their symptoms.   [12:07] Dr. Beveridge has a standardized questionnaire for patients to understand if they are having heartburn and difficulty with swallowing, so she can know that at each point of their endoscopy.   [12:18] Dr. Beveridge says it will be nice, hopefully in the future, when she can give a little more detail and depth in terms of assessing this more prospectively and seeing if that same number holds up or if she needs to tweak it a little bit.   [12:34] Holly thinks it's fascinating. Numbers give us so much information, to know if my mm is this versus this, the next time, or during allergy season or not.   [12:53] Ryan says it's cool that you're able to look back at existing patient records and identify this information. Now we have that 16 mm number in mind to say maybe this is where we'll start to see increased risk of dysphagia in these patients.   [13:28] Dr. Beveridge says, how we had to do it retrospectively was based on the endoscopist estimating what the size is. Gastroenterologists recognize they're not always the best at estimating the size of the esophagus.   [13:50] Dr. Beveridge says, if your endoscope could not pass through, or it was snugly passing through, you know the diameter of the endoscope. If a dilation was done, at what size dilation do we start to see a disruption?   [14:19] Dr. Beveridge says, the goal of a dilation is to get a disruption because there's scar tissue we want to break open. A patient might think disruption means a perforation or something more scary, but that is the goal. We want to break open that scar tissue.   [14:42] Dr. Beveridge says, once we see that scar tissue break open a little bit, then we can estimate what the diameter is, based on the size dilator we used.   [15:10] Dr. Beveridge says for adults, we use a standard adult upper endoscope, and that's about 13 mm. The ones we use for kids are about 6 mm.   [15:35] Dr. Beveridge says the adult endoscope is around 13 mm, and it's around 14 to 16 mm when we start to see the symptoms.   [16:07] Dr. Beveridge says there are two main types of dilation that we do. One is the Savary dilator or wire-guided dilator, a long dilator that stretches the entire esophagus, from the mouth down to the stomach.   [17:20] Dr. Beveridge says another way of doing it is while you have the endoscope in, you thread a catheter. At the end of the endoscope, there's a balloon. You fill the balloon with saline up to different sizes. Typically, they go up by 3 mm, so 12 to 15 mm.   [18:01] Dr. Beveridge says the catheter balloon dilator is good for discrete strictures because the balloon isn't going to do the entire esophagus; it's just going to do one area of the esophagus, and you're watching it the whole time.   [18:19] For the wire dilator, you remove the scope. You're not able to see, so it's important to assess ahead of time how narrow things are, so you start at a safe dilation. You go in each time to see if there's starting to be disruption, and then you can do more.   [18:44] Holly asks if a gastroenterologist doing an upper endoscopy with sedation sees that it's tight, would the gastroenterologist automatically do a dilation? Or, can a patient with dysphagia symptoms request to have a dilation?   [19:28] Dr. Beveridge says, right before an endoscopy, she discusses it with the patient and gets consent. She asks, even if their symptoms are good, but in the endoscopy she sees a narrowing where she would recommend a dilation, if they're OK with that.   [20:05] Dr. Beveridge says, if they're having issues with swallowing, often she will ask if they're OK with her doing a dilation. If she sees a narrowing, she can focus on that area and dilate it.   [20:19] Dr. Beveridge says not everywhere in the esophagus can we see as well. The very beginning of the esophagus is challenging to see and challenging to evaluate on imaging.   [20:32] Dr. Beveridge talks about empiric dilation. You don't see a narrowing, but you want to rule it out, so you do a dilation at a safe size, like 16 or 18 mm, to make sure you're not missing something up high.   [20:58] Dr. Beveridge says she always talks about that with her patients. Most say, go ahead. Some patients definitely want dilation; other patients say no, they really don't.   [21:12] Dr. Beveridge then asks the patient if there's real narrowing that may cause a food impaction, would they want dilation then, or hold off for another day?   [21:30] Dr. Beveridge never wants to do something the patient is not comfortable with. She also doesn't want them to need another endoscopy unnecessarily, if she can avoid that for them in the moment.   [21:46] Dr. Beveridge mentions the BougieCap used in Europe. It's a cap you put at the end of the endoscope. You use your endoscope as the dilator. You watch the whole time. It is hard plastic that causes a nice dilation. We may see it come to the U.S.   [22:37] Dr. Beveridge speaks of the FLIP catheter, which is a catheter with a balloon that doesn't cause dilation but distends and helps measure the diameter.   [23:33] Holly asks if Dr. Beveridge gives tips to patients on how to prepare for dilation and the recovery process.   [23:49] Dr. Beveridge had an upper endoscopy. She says there's nothing like experience to understand it better. She didn't have a dilation, but the biopsies caused discomfort.    [24:21] Dr. Beveridge says a lot of her patients have been through upper endoscopies, so they know how it feels. She warns them that the biopsies and dilation can cause discomfort.   [24:33] What's challenging is that everyone is different. Some patients are going to be more hypersensitive to it, and other patients are going to say they felt nothing and they were fine.   [24:46] Dr. Beveridge says some patients need to modify their diet for a few days to avoid significant chest pain. You never want someone to have to go to the ER for significant chest pain when it will just heal over time, and there's no perforation.   [25:12] Dr. Beveridge says other patients will be like her, eating chips and pretzels and saying they're fine. Dr. Beveridge typically has them start with liquids, nothing too hot or too cold, and advance as tolerated.   [25:28] Dr. Beveridge says patients can always use TylenolⓇ and over-the-counter numbing agents. You'll still have patients who will get significant discomfort. For the most part, starting with liquids has worked for Dr. Beveridge's patients.   [25:44] Holly recommends over-the-counter when her patients call, after she talks to their GI. Holly says after she has an endoscopy, she starts on liquids and shakes. On day three, she's fine. Holly says individualized care is amazing. We all are different.   [26:14] In the pediatric setting, the parents get the counseling, and they have not had sedation, but on the adult side, you're talking with the patient, who had sedation. Sometimes they don't remember.   [26:40] Dr. Beveridge says when possible, she waits for family members to come back and tells them they're going to have to "be the memory" because the patient probably won't remember this conversation.   [26:55] If a patient says no, they don't want them to come back and hear about it, always respect that. But Dr. Beveridge always tells them, you may not remember what we say.   [27:30] Ryan asks about data on how many times someone may need dilations. Dr. Beveridge says it comes down to the patient, but the biggest issue can be uncontrolled inflammation.   [27:44] Dr. Beveridge says if a patient's EoE is not controlled, inflammation leads to continued scarring down. That's why we talk about dilation as being an adjunctive measure, but not a treatment for EoE. It doesn't do anything for the inflammation.   [28:03] Dr. Beveridge says she has patients who ask why she can't just do a dilation every now and then. Dr. Beveridge considers dilation to be safe when needed, but if you can avoid it, that would be nicer for everyone.   [28:21] Dr. Beveridge says there's no great data on whether you only need one, or whether you're going to need 10, but one big theme is just: have we gotten your inflammation under control? That's also true for other conditions, such as acid reflux.   [28:45] Holly wasn't diagnosed until she was in her mid-twenties, and she had several upper endoscopies as a teenager and college student to dilate her, to help the situation.   [29:17] Holly says she had to get more endoscopies to figure out her weird food triggers that are not typical for everybody, so even if she's treated, she still has inflammation. That's why she had so many upper endoscopies.   [29:30] Ryan talks about underlying issues causing inflammation. Dilation is not treating those underlying causes. It's just helping with one symptom of this dysphagia, by expanding the esophagus.   [29:50] Ryan asks, What changes in symptoms should patients expect after the dilation? Dr. Beveridge says, ideally, if there's been a stricture, you're going to start to feel like your swallowing is better. You can get pills and food down better.   [30:07] Dr. Beveridge says, immediately post-dilation, sometimes people feel a little bit worse. Everything you swallow may be uncomfortable for you. But if it's been a successful dilation, hopefully, you're going to feel that things are going down better.   [30:40] Holly says she is so grateful that Dr. Beveridge looked into this, and hopefully, there will be a new protocol in the future. Holly asks what other key takeaways from this research may interest Dr. Beveridge in researching something further.   [31:02] Dr. Beveridge says, making sure that we're not missing scar tissue is big and important. One thing that we're trying to look at with our Pediatric GI colleagues is what threshold we should be looking at for the pediatric patient population.   [31:19] Dr. Beveridge says a pediatric patient's esophagus is a different size than an adult patient's. Understandably, we are more cautious when doing a dilation in the pediatric patient population than we are with adults.   [31:34] Dr. Beveridge may recommend empiric dilation for an adult but will feel more cautious about that with pediatric patients than with adult patients. Understanding what that threshold should be for the pediatrics is going to be really interesting.   [31:57] Dr. Beveridge says the diameter threshold we discussed is going to be important to know about, but everyone is different. You may have a diameter of 14 mm, you feel fine, and you don't want a dilation; you can accommodate OK. That's reasonable.   [32:15] Dr. Beveridge says she has had patients who get up to 18 mm, and that helps them, but they need a little bit more. If someone needs more of a dilation, we do that. Yes, have a threshold to assess, but always assess for what's personal for your patient.   [33:04] Dr. Beveridge says not just to assess the luminal diameter, but a thing that is helpful for gastroenterologists to know will be if there are other factors at play. As in her study of dysphagia predictors, anxiety, depression, and hypervigilance can play roles.   [33:37] Dr. Beveridge has patients who have to have a critical narrowing for them to finally feel an issue. Other patients, if they have the slightest of narrowing, are feeling something. Some patients are just more vigilant of what's happening in their esophagus.   [34:07] Dr. Beveridge says there's definitely a role for asking if your anxiety is under control. If there's feedback in the nerves, should we ask your GI Psychologist to be involved in terms of CBT for your esophagus? Take a look at everything.   [34:27] Dr. Beveridge says another part of the study they looked at was: are there different thresholds of eosinophils that we should be looking at? Is it just less than 15, or do some patients need it to be lower? Less than six? Less than 10?   [34:43] Dr. Beveridge says look at it as a whole for your patient.   [34:53] Dr. Beveridge says next, she will be working on a very long-term project: Can we identify a non-invasive method of screening a patient, diagnosing a patient for EoE, or monitoring a response to therapy?   [35:13] Dr. Beveridge has looked at transnasal endoscopy, which is put into this category of minimally invasive. It's still invasive; you're putting a scope through someone's nose, but it doesn't require sedation, which is a nice thing for some patients.   [35:29] There's the EnteroTrack, which started in Colorado. A patient swallows a string, and it stays in their esophagus for an hour, and we look at the proteins to see if things are active or not active.   [35:45] Dr. Beveridge is also looking at the breath metabolome. If we breathe into a bag and take a look at all the volatile organic compounds that are in our breath, can we find a signature related to EoE?   [36:01] It's assessing about 100 different compounds, not looking at one in particular, but how the whole thing looks. What signature is there, based on looking at all the compounds?   [36:15] Dr. Beveridge presented some of that data at DDW and has a grant from the ACG to look at this and assess patients with and without EoE.   [36:33] Dr. Beveridge says further, doing longitudinal data of looking at patients once they've gotten into remission on treatment and seeing, do we then see a signature change?   [36:47] Dr. Beveridge says no one is under any illusion that endoscopies are going away. They will always be part of what we do in gastroenterology, but there are limitations: sedation, a full day away from work, nothing by mouth, and a driver, etc.   [37:04] If there are alternatives to help supplement that, it would be nice. One of the barriers for patients doing diet elimination is the number of endoscopies that are required. If there's a way to assess by breath if a food is a trigger, that would be good.   [37:32] Dr. Beveridge says that's the big thing she's looking at, but it will take years. It's not going to be a quick, easy one, but it's very interesting to take a look at.   [37:45] Holly speaks of how much treatment has changed since she was diagnosed. She has done all the scopes. She says this sounds amazing. She loves that people like Dr. Beveridge are thinking of how to make testing less invasive and more comfortable.   [38:12] Dr. Beveridge says another thing she is excited about is the transition of care. She recently did a survey and is analyzing the data to assess what the barrier is from the physician perspective in terms of helping our patients transition.   [38:40] Dr. Beveridge is also looking at doing a nice multi-center consensus to help this as well, led by Dr. Sophia Patel and Dr. Emily McGowan, who are fantastic in the EoE world, looking to see how we can make this better for our patients.   [38:58] Ryan says, with so much interesting work coming up, we'll have to have you back to chat about some of these additional projects. Everyone is super interested in less invasive stuff and better treatment pathways. Transition of care is an important part of that.   [39:11] Ryan appreciates Dr. Beveridge for joining the conversation and hopes to have her back on another episode so we can learn more about EoE and these different future research endeavors.   [39:20] For our listeners who would like to learn more about EoE today, you can visit apfed.org/EoE and check out the links in the show notes below. [39:27] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at apfed.org/specialist.   [39:36] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.   [39:46] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out apfed.org/shareyourstory.   [39:55] Ryan thanks Dr. Beveridge for joining us. This was a fun conversation and really insightful. Holly thanks APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.orgapfed.org/specialist apfed.org/connections Claire Beveridge, MD Cleveland Clinic Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda.   Tweetables (Edited):   "I have loved the work that we've done [at the Cleveland Clinic]. It's been really nice to center everything on our EoE patients and have nice multidisciplinary care with speech-language pathologists, allergists, dietitians, pulmonologists, and everyone." — Claire Beveridge, MD   "It's a little crazy to think that it's only in the last few years that we have had FDA-approved medications for [EoE], and that we have been jerry-rigging asthma medications to treat our patients." — Claire Beveridge, MD   "On the whole, dysphagia means issues with swallowing. … It's a feeling of something getting stuck or something slowly moving down. There are also subtle symptoms that can happen." — Claire Beveridge, MD   "The goal of a dilation is to get a disruption because there's scar tissue we want to break open." — Claire Beveridge, MD   "I am looking at the breath metabolome. If we breathe into a bag and take a look at all the volatile organic compounds that are in our breath, can we find a signature related to EoE?" — Claire Beveridge, MD   Guest Bio: Claire Beveridge, MD, is a Staff Member in the Department of Gastroenterology and Hepatology and heads the Eosinophilic Esophagitis (EoE) adult clinic as well as the transition pediatric to adult EoE clinic. Dr. Beveridge's specialty interests include: EoE, Achalasia, Barrett's esophagus, GERD, esophageal swallowing disorders, and esophageal motility disorders.

For more information regarding this CME/CE activity and to complete the CME/CE requirements and claim credit for this activity, visit:https://www.mycme.com/learn/course/recent-research-into-biologics-in-asthma-10830Program DescriptionThis podcast activity provides an in-depth review of several recent trials in severe asthma management, highlighting the ongoing shift in asthma precision medicine towards identifying the right patients for the right treatments. Clinicians will examine clinical data from the NIMBLE trial (depemokimab), alongside the WAYFINDER trial (tezepelumab), as well ZEPHYR 5 (benralizumab), REMOMEPO (mepolizumab), VESTIGE (dupilumab) and VALLIANT (verekitug). This activity will grant clinicians critical insights to move beyond simple exacerbation reduction and precisely align advanced biologic therapies with the underlying cellular biology driving each patient's symptoms.Educational ObjectiveAt the conclusion of this activity, participants should be better able to:Review recent updates in the asthma literature, including recent guideline revisions and evolving clinical trial data for newer biologic therapies.Accredited ProvidersThe National Association for Continuing Education in partnership with the Association for Pulmonary Advanced Practice Providers (APAPP).The National Association for Continuing Education is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.The National Association for Continuing Education designates this enduring material for a maximum of 0.25 Physicians should claim only the credit commensurate with the extent of their participation in the activity. The National Association for Continuing Education is accredited by the American Association of Nurse Practitioners as an approved provider of nurse practitioner continuing education. Provider number: 121222. This activity is approved for 0.25 contact hours (which includes 0.25 hours of pharmacology).FacultyCedric Rutland, BS, MD, FCCPVolunteer FacultyUniversity of CaliforniaPulmonary Critical Care Internal Medicine, ProducerRutland Medical GroupNewport Critical Care PhysiciansLake Forest, CADr. Rutland has disclosed the following financial relationships:Consultant: Sanofi (asthma, diabetes, NP, RSV, AD), Boehringer Ingelheim (IPF, PPF), Regeneron (asthma, diabetes, NP, RSV, AD), Chiesi (asthma), Baxter (bronchiectasis), Insmed (bronchiectasis), AstraZeneca (asthma, cough)Advisor/Advisory Board: Sanofi (asthma, AD, NP), Regeneron (asthma, AD), Chiesi (asthma), Boehringer Ingelheim (IPF, PPF), AstraZeneca (asthma, cough)Speaker: Sanofi (asthma, NP, AD, AFRS, urticaria, EoE), Regeneron (asthma, NP, AD, AFRS, urticaria, EoE), Boehringer Ingelheim (IPF, PPF), AstraZeneca (asthma, cough), Chiesi (asthma), Baxter (bronchiectasis)These relationships have ended within last 24 months:Consultant: GSK (asthma, cough, RSV)Advisor/Advisory Board: GSK (asthma, cough, RSV)Speaker: GSK (asthma, cough, RSV)Diego J. Maselli, MD, FCCP, ATSFProfessor and ChiefDivision of Pulmonary Diseases & Critical CareUT Health at San AntonioDirector, Respiratory Care, University Health SystemDirector, Severe Asthma Program, University Health SystemSan Antonio, TXDr. Maselli has disclosed the following financial relationships:Consultant: AstraZeneca (asthma, COPD), Sanofi/Regeneron (asthma, COPD), GSK ( asthma, COPD), Amgen (asthma, COPD), Insmed (bronchiectasis)Speaker: GSK (asthma, COPD), AstraZeneca (asthma, COPD), Amgen (asthma, COPD), Sanofi/Regeneron (asthma, COPD)All of the relevant financial relationships listed for these individuals have been mitigated.Nurse Planner and Peer ReviewerMarjorie Crabtree, DNP, FNP, ANPHaymarket Medical EducationSteering CommitteeNurse Practitioner Healthcare FoundationAccredited Provider Program DirectorBellevue, WADr. Crabtree has no relevant conflicts of interest with any ACCME-defined ineligible company.Accredited Provider DisclosureNACE staff has no relevant financial relationships to disclose.Intended AudiencePulmonology, allergy/immunology, and critical care clinicians (physicians, nurse practitioners, and physician associates), as well as primary care and geriatric medicine clinicians caring for patients with asthma.Commercial SupportersThis activity is supported by an independent educational grant from Regeneron Pharmaceuticals, Inc and Sanofi.Please visit  http://naceonline.com to engage in more live and on demand CME/CE content.

Please enjoy this adventure from our Patreon whilst we take a short break over the summer!"Welcome on board the deep space exploration vessel Eternis! Exploring uncharted space going where no ship has gone before! Join Tom, Bolty, Daniel, Mark, and Perron for the first ever session of EoE!".Music by Dreamstate Logic, Syrinscape, intro theme by Geoff Harvey from Pixabay, outro theme by Luis Humanoide from Pixabay.

Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, interviews Maddie, a young adult living with EoE, about her journey with EoE and navigating an elimination diet. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:51] Host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda.   [1:07] Ryan introduces today's topic, eosinophilic esophagitis (EoE). EoE is a chronic, allergic, inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.   [1:25] Ryan introduces and welcomes today's guest, Maddie, also known as Eosinophilic Chick on Instagram. She's a patient advocate living with EoE.   [1:38] Maddie was diagnosed with EoE in 2021. She has been symptomatic for 10 to 12 years, but was not familiar with the condition itself until then. In her childhood, she was afraid of the upper endoscopy procedure, so she avoided it as much as she could.   [2:06] Besides the patient advocacy that she does, Maddie is an actuary. Throughout the week, she dedicates time to the healthcare industry space in the Philadelphia area. Maddie is 26, navigating her 20s with EoE.   [2:24] Ryan says he feels like being diagnosed as a young adult can be a very big shift. You're going through a lot of other changes: graduating from college, having to figure out work, and having to start managing a chronic illness like EoE.   [2:46] When Maddie was 12 years old, she would have a blockage in her throat. Typically, she walked away from the dinner table and had to regurgitate the food she had consumed.   [3:02] Since heading into college and becoming aware, with the pandemic, of the symptoms of COVID, shortness of breath is one that she leaned into. When she was 21, she felt like she couldn't breathe. It turned out that she was choking on food.     [3:18] There was an impaction, which Maddie obsessed about over time. In addition, around the time she was 21, her symptoms got the best of her. She wasn't able to keep up with thriving, day to day.   [3:31] As a child, some of her symptoms weren't normal, but they were manageable to adapt to: throwing up after a meal, here and there. Her symptoms started to pick up, and she started to lose a lot of weight in her 20s. That's when she sought a diagnosis.   [4:18] Maddie thought it was related to her lung function. She started to lean toward getting diagnosed with asthma, but after testing, that wasn't clear. Her gynecologist thought it was more of a hormonal conflict. They did a lot of labs but got no diagnosis.   [4:45] Meanwhile, Maddie was getting sick. As a last resort, she headed over to gastro. They didn't find anything initially. They did a barium swallow test, another lung function test, and finally, an upper endoscopy.   [5:04] Maddie had spent most of the summer before her senior year of college just trying to figure out what was going on, doing a multitude of tests, and that upper endoscopy with a biopsy captured the EoE.   [5:17] Maddie was able to get support from a specialist who dedicates all of their day-to-day work to EoE treatments.   [5:25] Ryan says it can be tricky to figure out right away what's going on; there are so many other conditions that could be the answer. Until you get to that final diagnosis, it can be a very long process. He's glad she got an answer, eventually.   [5:53] Maddie says, given the timeline of her life, a lot of people were anxious and worried about her future.    [6:08] Once she was able to get that answer, Maddie noticed a lot of relief from a ton of her symptoms, once she was able to get to work on it. Maddie also had an ulcer from frequent vomiting.   [6:25] Maddie had to slow everything down and be very intentional about the things she ate.   [6:51] Maddie lost 15 pounds that summer, as she was trying to gain weight. Whatever she ate, she still lost weight. She was worrying about that rather than about graduating that year.   [7:08] Maddie wanted to know how to register as a disabled student at her university to make sure she got all the resources she needed to be successful.   [7:18] Maddie was rewiring the things she once was worried about, relative now, to what this condition has packaged with it. It was a difficult time. It taught her a lot about discipline, making sure that hard things don't turn her away from achieving the goal.   [7:46] It taught Maddie about being intentional with her time and energy, what's best for her, what's going to make her succeed with whatever goal she's achieving.   [8:07] Ryan says now that Maddie is properly diagnosed, he hopes she's a little bit more in control of her health. Maddie says, "Answers are the biggest power with this condition."   [8:30] Maddie says that before her condition was managed, she went to the ER three times. The first time she was hospitalized, she could not keep down food for two days, so she had to get IV treatment. It wasn't necessarily an impaction, but she wasn't able to eat.   [9:04] The second and third times Maddie went to the ER were related to throwing up again.    [9:26] Maddie's goal was to stop vomiting altogether. She started to get serious with diet therapy, leaning into her six-food elimination diet.   [9:39] Maddie started the diet the week after she graduated, just to be home and have a lot of variables controlled to try the diet, rather than cutting corners. It was really simple to do at home.   [10:04] Maddie first tried cutting dairy, eggs, and shellfish. Her sister is allergic to those foods and is anaphylactic; Maddie is not. That elimination diet was helpful, but it didn't check all the boxes where all her symptoms were free.   [1024] Maddie tried swallowing medication from an inhaler instead of inhaling it into her lungs, trying to coat her esophagus with it. It was effective in the biopsy results, but she was still getting sick, so she did not feel comfortable proceeding with that treatment.   [10:42] All roads led to the six-food elimination diet that could reveal what the culprits were and what was causing her to be so sick. The results were surprising.   [11:06] Soy was a big trigger that surprised Maddie. She consumed so many soy products. That was quite humbling to hear. That was one of her biggest triggers.   [11:34] Maddie completed the six-food elimination diet with triggers of soy, eggs, dairy, nuts, and shellfish. Because of all those groups, it was really difficult for her to manage her diet effectively when going out to eat.   [11:52] Sometimes soybean oil is in a salad dressing or how foods are fried, to a point where Maddie wasn't able to maintain her EoE count below 15 eosinophils per high-powered field.   [12:08] With that, she started with a biologic, dupilumab. That enables her to eat all her trigger foods. An injectable is tough for Maddie as she's not fond of needles.    [12:36] Now Maddie can eat all of the food groups, which is definitely a huge win in terms of her treatment plan. It lessens the impact of living every day with EoE.    [12:53] Ryan says he is on dupilumab, as well. It works well for him. Maddie says she is not avoiding any food triggers, and that's the best part.   [13:24] Ryan says it takes a huge mental load off when you're not having to think about whether there may be soy in what you order from a restaurant, or having to check all the ingredients at the store to make sure that you're not accidentally being exposed.   [13:53] Maddie says, the best advice I would give [to someone on an elimination diet] is focusing on the perimeter of the grocery store. A lot of those foods are dedicated to being whole foods. So, I found that approach to be the most successful.   [14:12] Maddie says, and still finding things that you love and can find new things to enjoy. You're entitled to absolutely enjoy food. It brings a lot of joy into my life.   [14:23] Maddie says, I would specifically love traveling to a bunch of different grocery stores and exploring the allergy aisle. Everyone had their unique niche for it. So, you'll definitely find ones that are more favorable to your preferences than others.   [14:37] Maddie says, but find things, too, that you still enjoy beyond just feeling fully nutritious, and strong, and equipped. You're entitled to indulge, too, even with all the restrictions that you have.   [15:00] Ryan agrees there are a lot of options out there. Exploring and finding something can be really impactful from a quality-of-life perspective, just to have something new. Sticking to the border of the grocery store is a good way of putting it.   [15:13] Ryan says it's everything in those center aisles that gets so complicated. There are always some good, whole food options on the edges, which is nice.   [15:23] Maddie says read every food label, even if you think that you know what's in the food products. A brand of hummus had soybean oil in it. I had to retest, and it added six additional weeks onto my game plan because of that silly mistake.   [15:40] Read everything, even if you think you know it. Odds are, you don't. Don't trust any label until you've fully read it and are confident.   [15:56] Ryan says one of his trigger foods is rice and it does pop up in weird places. Once he was eating potato chips, but then he looked at the ingredients. Rice flour was the second ingredient!   [16:33] If you're not paying attention, it can catch you by surprise. Definitely read labels. It's time-consuming, but it's always a good idea.   [16:42] Ryan asks what other treatment options Maddie tried besides a swallowed inhaled steroid. When she had GI symptoms, she immediately tried a PPI, but was still symptomatic.    [17:47] Maddie says, facing the hard things, getting in front of a problem, and actually attacking it with the solution, is something she consistently dismissed in her teenage years. It took a lot of effort to find the perfect solution that fit.   [18:06] Maddie says, she'll continue to make sure that this is the best solution for her, as her lifestyle and needs change over time.   [18:14] Maddie says, attacking things that might seem intimidating, like 360-plus days of dieting, and not going out to eat, something that was really isolating for her; it just proved so much value in her journey.   [18:29] Maddie says, she is now equipped with that knowledge to make additional decisions as more treatments hopefully come out for EoE. You never know if there are more resources in the pipeline.   [18:48] Maddie says, with this knowledge that I've had, I think it's equipped me to face anything new, and/or ensure that my disease is managed, ultimately.   [18:57] Ryan says, there's a ton of ongoing research and all sorts of new treatments coming out. Ten years ago, he could not have imagined a treatment option like dupilumab.    [19:08] Ryan says, now that we have that, and it's proving so effective for so many people, he thinks that's so exciting and so wonderful. The fact that there are more treatment options like that coming out is so exciting.   [19:27] Maddie says she thinks accepting the illness, and accepting that she's not normal, and the way she lives comes with complexities, relative to her peers. It's frustrating.   [19:40] Maddie says she would love to just not take my dupilumab dose and eat whatever she wants, and not have an annual visit, not do upper endoscopies, and put all this effort, money, and mind all towards this illness.   [19:56] Maddie says accepting that she is unique and this illness will always be a part of her. Coming to terms with that is something she continues to struggle with, just recognizing her peers are not going through the same thing.   [20:12] Maddie says her peers are supportive, but she wonders why she is different and how she got there. She's still working through that.   [30:21] Ryan talks about all the small details a person living with EoE has to think about when traveling or going out for food after work. It's an extra level of anxiety that other people don't have to worry about.   [20:54] Maddie has suggestions for people living with EoE: Inform your peers about your condition. Share your knowledge with your community. With their understanding, they can empower you in social situations, rather than isolate you.   [21:14] When Maddie was dieting, her closest friend's family made sure she had something to eat rather than asking why she wasn't eating. Once she had to tell friends at a dinner that she wasn't eating, she was there to socialize.   [21:55] The more you work towards your acceptance, the more you inform your community, the more you inform yourself, those situations will come a lot lighter. There's always going to be a new scenario where you have to explain your condition.   [22:15] Maddie says, If you can get everybody to pronounce eosinophilic esophagitis, that's a huge win itself. I typically stop at EoE.   [22:32] Ryan talks about anxiety about not eating at dinner. Everybody's just happy you show up and are willing to socialize. Advocating for yourself is such a good lesson to take away from this.   [23:10] Ryan talks about Maddie's patient advocacy work. He follows her on Instagram. She puts so much great information out there. She also works in a professional career.   [23:30] Maddie talks about balancing her activities and illness. She aligns her content with her passion, so it's a hobby she enjoys. She hopes others find value in it. Outside of work, Maddie likes to advocate for EoE. It's busy, but she's super passionate about it.   [24:08] Ryan engages and advocates mostly through APFED, because they provide a lot of wonderful support. He's glad that Maddie uses her experiences to advocate through Instagram and her day-to-day life.   [24:33] Ryan says it's such a great way to approach living with a chronic illness.   [24:40] Maddie's initial goal was to create content so she could explore her growth in her journey. It was a diary about all the things she had done with EoE.   [24:58] Maddie mentions milestones in the community: dupilumab having FDA approval during that timeline, it was exciting to witness with her community.   [25:12] When Maddie was diagnosed, she found information online. The social media community is very powerful in making it real. Maddie loves APFED's content and the comments of folks impacted by the disease. It adds organic, natural reality.    [25:37] Maddie says she loves sharing her story, and she will continue to share it. This isn't ending yet. It's chronic, so EoE will be with her for quite some time. Hopefully, they'll find a cure, but in the meantime, it's not going anywhere.   [25:59] Maddie started her account when she got diagnosed in the Fall of 2021. She focused on alternative foods in the grocery store and dairy-free and egg-free cooking.   [26:18] When she transitioned to the six-food elimination diet, she focused on recipe creation and innovation. She tried to make a deep-dish Chicago-style pizza that was gluten-free. It was a huge mess! She gives respect to the gluten-free community.   [26:46] Ryan describes a poor experience with a chicken-crust gluten-free pizza.   [27:31] Maddie pushes for awareness because there are more people than you think in your community who have undiagnosed EoE. Some are quiet warriors with the condition, working behind the scenes, managing it, not sharing with their community.   [27:54] Between 2021 and now, Maddie has crossed paths with a lot of individuals, even down to childhood neighbors, who have the condition. It's humbling to know that other individuals are going through the same thing, quietly.   [28:13] Maddie says, being able to connect and unify that community is something she wishes she could promise her 2021 self: There's a community out there waiting for you with open arms that will support you through this journey.   [28:30] There are a lot of great people in this space who are unfortunately impacted by this disease. Knowing the community is there is something I would tell myself.   [29:02] Ryan invites Maddie to share a message of encouragement for people living with eosinophilic-associated diseases.   [29:08] Maddie would say, failure is not always a failure. In this case, it took her four forms of therapy treatments until she found the perfect one for her. Try to keep your mind open on the pathways of managing your symptoms.    [29:30] It may cause you to run into a couple of failures, which is so frustrating. She has been in tears before about this, but sometimes failure brings you one step closer to success, or in this case, relief in managing your symptoms.   [31:04] Maddie and Ryan discuss the string test, relating to upper endoscopies, and the benefits of a shorter test without anesthesia. Maddie is excited by the things in the pipeline for potential treatments or maintenance options.   [32:06] Ryan has talked to people who have had the string test, and it sounds like a much better experience until they have to pull it back up, and then it sounds like maybe you wish you were asleep for that part. Overall, it sounds so much more pleasant.   [32:21] Ryan and Maddie discuss trans-nasal endoscopies, with a thinner tube and no anesthesia. It's on Ryan's radar. Endoscopies are not fun.   [34:37] Maddie is excited that there are commercials starting with EoE, talking about the condition on television.   [35:21] Ryan says, it is exciting that there's so much more understanding about this disorder. There is more public awareness now. Maybe 10 years ago, you never would have known that your neighbor also has EoE.   [35:34] Now people can get these diagnoses, understand what's going on, and talk about it more openly, which is really exciting.    [35:45] Maddie says APFED had a great campaign in May, promoting EoE awareness. The more we do that, the more everybody impacted by this disease will win, for sure.   [36:01] Ryan thanks Maddie for her work promoting EoE awareness. It's great to have people out there pushing advocacy and getting information out there. Ryan thanks Maddie for joining us today for this great conversation.   [35:22] For our listeners who would like to learn more about eosinophilic disorders, please visit apfed.org and check out the links in the show notes. [36:28] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at apfed.org/specialist.   [36:37] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out apfed.org/shareyourstory.   [36:45] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.   [36:56] Ryan thanks Maddie. Ryan thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.orgEsophageal string test (early research was supported by an APFED grant)  apfed.org/specialist apfed.org/connections Eosinophilic.Chick — Maddie on Instagram Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables (Edited):   "I have officially been diagnosed with EoE since 2021. So, coming up on fiveish years now with the condition, knowing that I have it. I've been symptomatic for over 10 to 12 years, call it, just not really familiar with the condition itself." — Maddie   "My symptoms started to pick up, and I started to lose a lot of weight in my 20s. That's really when I started to get a lot of attention towards my diagnosis." — Maddie   "I first tried cutting dairy, eggs, and shellfish. My sister has an allergy to those foods and is anaphylactic; I am not. That diet was good, but it didn't check all the boxes where all my symptoms were free." — Maddie   "I completed the six-food elimination diet with triggers of soy, eggs, dairy, nuts, and shellfish. Because of all those groups, it was really difficult for me to manage my diet effectively when going out to eat." — Maddie   "I started my [Instagram] account when I got diagnosed in the Fall of 2021. I focused on alternative foods in the grocery store and dairy-free and egg-free cooking. … When I transitioned to the six-food elimination diet, I focused on recipe creation and innovation." — Maddie   Guest Bio: Maddie is the creator behind Eosinophilic Chick, a platform dedicated to raising awareness about eosinophilic esophagitis (EoE), food allergies, and life with chronic illness. Diagnosed with EoE as a young adult, Maddie shares her experiences navigating elimination diets, medical treatments, endoscopies, and the emotional impact of living with a chronic condition. Through honest storytelling, practical tips, recipes, and advocacy, she aims to help others feel less alone.

Please visit answersincme.com/860/MED-GST-04054-replay to participate, download slides and supporting materials, complete the post test, and get a certificate. Presented by Joy W. Chang, MD, MS; Robbie Pesek, MD; and Sarah Enslin, PA-C, MS. In this activity, multidisciplinary experts in pediatric and adult eosinophilic esophagitis (EoE) highlight updated management guidelines and provide case-based insights on implementing guideline-concordant pharmacologic therapies in real-world practice. Upon completion of this activity, participants should be better able to: Identify current guideline recommendations for the pharmacologic treatment of EoE; Specify how patient, disease, and treatment factors impact treatment selection for EoE; and Integrate guideline-recommended pharmacologic therapies into individualized care for patients with EoE. This activity is intended for US healthcare professionals only.

Alarme é um quadro do canal Não Inviabilize. Aqui você ouve as suas histórias misturadas às minhas!Use a hashtag #DificilDeEngolir e comente a história no nosso grupo do telegram: https://t.me/naoinviabilizePUBLICIDADE SANOFI E ESOFAGITE EOSINOFÍLICAComo parte da campanha “Difícil de engolir é não tratar a EoE”, da Sanofi, esse episódio conta a jornada de uma paciente de Esofagite Eosinofílica, com depoimentos de Dr. Gabriel Benevides, CRM 152074, e Dra. Mariele Morandin, CRM 162098. O relato é baseado na experiência real da paciente e não constitui evidência de estudos clínicos, utilizado apenas para fins de conscientização. Para ter as referências e saber mais, acesse: www.dificildeengolir.com.br / MAT-BR-2602010QUER OUVIR MAIS HISTÓRIAS? BAIXE NOSSO APLICATIVO EM SUA LOJA APPLE/GOOGLE, CONHEÇA NOSSOS QUADROS EXCLUSIVOS E RECEBA EPISÓDIOS INÉDITOS DE SEGUNDA A SÁBADO: https://naoinviabilize.com.br/assineEnvie a sua história bem detalhada para naoinviabilize@gmail.com, seu anonimato será mantido, todos os nomes, profissões e locais são trocados para preservar a sua identidade.Site: https://naoinviabilize.com.brTranscrição dos episódios: https://naoinviabilize.com.br/episodiosYoutube: https://youtube.com/naoinviabilizeInstagram: https://www.instagram.com/naoinviabilizeTikTok: https://www.tiktok.com/@naoinviabilizeX: https://x.com/naoinviabilizeFacebook: https://facebook.com/naoinviabilizeEdição de áudios: Depois O Leo Corta MultimídiaVinhetas: Pipoca SoundVoz da vinheta: Priscila Armani

In this episode of Talk of Fame, Kylie Montigney chats with Victoria Pousada Kreindler! Victoria is a disabled, multilingual, petite-curve Model, Actor, and Singer. She's the first Spanish, petite-curve model to walk an official calendar fashion show in the world , the first petite-curve model to walk London Fashion Week, and to be featured in ELLE, Harper's Bazaar, Glamour Magazine and the cover of Vanity Teen. She has ADHD, EOE, PCOS and lives in New York and Los Angeles. She started modeling and acting professionally in 2021 and has since been in various short films, guest-starred on a web series, and modeled for various international brands and publications. She trained as a Singer for over 20 years and studied Costume Design for 3 years at Rutgers University where she graduated with a Bachelor's in Theatre and concentrations in Music, Spanish, and Japanese. In addition, she's a trained horseback rider and archer. She also co-founded The Starters Block, a non-profit which aims to bring back new faces and originality to fashion and entertainment; was a casting director for Height Revolution, an organization dedicated to highlighting short women in fashion.  As a petite-plus, neurodiverse, and disability Model / Actor, Victoria advocates through media for inclusion and hopes to inspire both current and future generations.Follow Me:Instagram:@Officialkyliemontigney@TalkoffamepodFacebook:OfficialkyliemontigneyTalkoffameTwitter:@Kyliemontigney4About Me:Hi, I'm Kylie! I'm passionate about sports, spending time with family, traveling, and connecting with people who inspire me. I love listening to people's stories and sharing their journeys with the world

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Phillip Arceneaux, PhD, on his journey with EoE and balancing his career. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:12] Holly introduces today's topic. It's May, and each year in May, there are several awareness observances for eosinophilic-associated diseases, including National Eosinophil Awareness Week, World Eosinophilic Diseases Day, and World EoE Day.   [1:29] Throughout May, APFED is sharing stories from individuals and families living with eosinophil-associated diseases to highlight the impact of these chronic conditions.   [1:38] Ryan says, Today, we'll be discussing eosinophilic esophagitis (EoE). EoE is a chronic allergic inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.   [1:56] Holly introduces today's guest, Dr. Phillip Arceneaux, a patient advocate living with EoE since 2019.   [2:18] Phil is 35. He was born and raised in Lafayette, Louisiana. He received his undergraduate degree there. He worked at the U.S. Naval Academy in Annapolis, Maryland. Then he worked at the University of Oregon.   [2:38] Phil moved to Florida and did his Ph.D. in Mass Communication at the University of Florida. Since 2020, he has been based out of the Cincinnati area, working at Miami University of Ohio.   [3:05] Phil was diagnosed with EoE in March of 2019, while finishing his degree at UF.   [3:12] Phil was eating dinner with his girlfriend. He took a bite of a roast beef sandwich, and it didn't go down smoothly, it became impacted.    [3:56] Phil thought he had food stuck in his windpipe. He was running around banging his chest. He calmed down and was able to get some of the food out, and he was breathing again.   [4:12] Phil thought he was fine. He quickly realized he wasn't. He still had a partial impaction. He didn't know what was going on in his chest. He spent about 30 minutes moving around, coughing, and trying to get his chest to feel right.   [4:44] After about an hour, Phil decided to go to the ER. His girlfriend insisted on driving him to the hospital. It was spring break, so the ER was not busy. It still took a couple of hours to be seen and treated.   [5:25] The doctors assessed him. They gave him medicine to induce vomiting. About 12 hours after the initial choking, his impaction cleared. They kept him overnight and gave him an endoscopy in the morning to check his esophagus and take biopsies.   [6:31] Phil was in the ER for four to six hours before anyone told him what they thought he had. Then the ER doctor told him he was 95% certain Phil had eosinophilic esophagitis. Phil had never heard of it.   [7:04] The ER doctor gave Phil a rundown of EoE. He said Phil would have an endoscopy, and then he would be referred to a GI and set up for treatment. The doctor said he couldn't confirm it before the endoscopy, but he thought it was EoE.   [7:31] Ryan says he's talked to people who have had months-long processes of getting their diagnosis. Phil gives all the credit to the hospital. He was fortunate that his experience was good.   [7:55] Phil says that the staff at the ER and the GI specialist were so knowledgeable about the research and where things were going in this area of medicine. They were very confident about the diagnosis and treatment plan.   [8:11] Dr. Arcenaux gives a shout-out to his GI. He spent well over an hour with him during his initial consult. He explained how EoE would impact him, from diet, grocery shopping, and challenges eating at restaurants, because of cross-contamination.   [8:42] The GI specialist talked him through impacts on dating and dining out  and how to approach social activities.   [9:09] Phil's GI specialist talked to him about employers. He would need employers with health insurance that will cover the endoscopies and treatments for EoE. Phil appreciated the initial onboarding for his EoE diagnosis.   [9:41] Ryan says he needs to discuss this with Phil, as he just finished his Ph.D. a few months ago, and he's looking at insurance for his new job, and how to figure out business lunches.   [9:51] Ryan says Ph.D. students are so motivated by free food. As someone with EoE, that never applied to him. Ryan says shifting from normal eating habits to an EoE diet is a major shift.   [10:27] Phil knows now that there were signs and symptoms, but he had no idea about them before his diagnosis.   [10:33] Phil is on a special diet for his EoE. When he's not great at avoiding his trigger foods, he starts to see dysphagia symptoms in his swallowing, and he has quite a bit of regurgitation. He had been seeing that for months before this initial major food impaction and ER visit.   [10:54] Phil had no idea what was going on. He just thought it was weird that he was regurgitating more than he used to. Sometimes food didn't go down well. Once or twice, he had a small aspiration event. He thought he needed to chew better.   [11:11] He didn't know what those symptoms meant, and he wrote them off. None of it made sense until that diagnosis. Even then, it took a while to wrap his head around it. Years removed, he sees there were so many signs and symptoms he never processed.   [11:28] Holly asks what Phil means by aspiration. He says he means water going down his windpipe, making it hard to breathe, with liquid in his lungs. Holly says that aspiration can be caused by inflammation in people who have EoE.   [12:07] Holly says people with EoE can be sent for a swallow study to look at the anatomy of their swallow function. That's a subject for another episode!   [12:35] Ryan says Phil noticed he was regurgitating more than normal and remarks that people with chronic illnesses don't realize that most people don't normally regurgitate at all. It's a sign that something's wrong.   [13:03] The ER doctor didn't offer Phil any other diagnosis than EoE. The doctor was 95% sure he had EoE, but confirmed it with an endoscopy.   [13:20] Holly asks Phil what food allergies he has. As an infant, he had an egg allergy that limited his vaccines. Now he knows his primary allergen is egg, and it led to his EoE issues.   [13:51] When Phil started his Ph.D. program, he wanted to eat healthier foods. He cut out fast food, and he ate more eggs. He consumed many eggs during his Ph.D. program. A snack was scrambled eggs or something with scrambled eggs.   [14:22] Phil went through a carton of 18 eggs in less than a week. He knew that when he was younger, he'd had egg sensitivity, but as an adult, he'd eaten eggs and nothing happened that registered as an issue. He thought he had outgrown it.   [14:40] Phil says he had outgrown other food allergies. He assumed eggs were fine, so he adopted a heavy egg diet to increase his protein intake and be healthier. Then all these symptoms manifested.   [15:00] Phil never associated the symptoms with eggs. His treatment plan is dieting and minimizing egg as much as possible. That is not easy in the United States, where everything is processed and often contains egg.   [15:19] Holly says she has seen an influx of adult-onset EoE patients with a history of a dairy or egg allergy who were putting cottage cheese and eggs in everything, and all of a sudden, started having regurgitation and food getting stuck.   [15:51] Phil doesn't eat scrambled eggs anymore. One slice of a cake with eggs in it will not send him to the ER. It takes a couple of days of high exposure to reach that point. He knows what he can have daily that will not impact him in the long term.   [16:20] Holly and Ryan agree that it's important to know your limits, and consult with your physicians about foods. Rice is a trigger for Ryan, but if brown rice syrup is about the 20th ingredient, he can have it and be fine. If he were to eat a lot of rice, he will have issues. [17:21] Phil says he recently got married, and his wife is a health nut. She has radically changed his diet. They eat very high-protein, low-fat, and low-carb. It's been easy to manage that without eggs. They eat a lot of chicken, turkey, and fish.   [17:41] Being from Louisiana, Phil says if he had to give up seafood, he doesn't know what he would do. He's a huge craft beer lover. If he had to give up gluten, he doesn't know what he would do. He can manage without eggs.   [18:21] Ryan says dairy was a big trigger for him when he was younger, but now he's on dupilumab, a biologic approved for treating EoE, and that's helped him a lot. He's started to integrate whey protein and milk protein back into his diet.   [18:47] Phil says once he finished with school, he graduated and lost health insurance. He didn't have a source of income or health insurance, so he declined to have dilation therapy. That's also why he deferred to dietary therapy. He removed his allergens one by one.   [19:12] Phil was diagnosed in 2019, not long before the pandemic hit. He lived in a bubble for two to three years and kept to a very regimented diet. That's where he started to find his balance.   [19:30] Phil travels quite a bit as a professor. He goes to international conferences. In 2022, a big annual conference opened in Paris, France. He was living his best life, but didn't register that every pastry he put in his mouth had an egg wash.   [20:14] Phil was there for seven days. On the sixth night, he was eating a tough, dry steak. He had a severe food impaction, worse than the one in 2019. He was with colleagues who didn't know what he had.   [20:40] He paid, excused himself, went to his hotel room, and tried to vomit it up. He couldn't do it. He called an Uber and went to the nearest ER. He had an emergency endoscopy. It's not easy to navigate another country's healthcare system, but he did it.   [21:14] When Phil returned from the conference, he said he needed to get serious. He had a GP, but he needed a GI specialist. Cincinnati has multiple great health systems, so he got a GI specialist and started down a path of treatment.   [21:38] He told his GI specialist, this has happened to me, and I never want it to happen again. What can we do? He started with proton pump inhibitors. No effect. He doesn't have acid reflux. Next was the topical corticosteroid, swallowed budesonide.    [22:22] Phil used a pump for asthma, but this was to swallow. After two weeks, he developed a bad case of thrush that took a long time to get rid of. He had never had thrush and didn't know what it was. It took a couple of rounds of treatment to clear up.   [22:43] After that, in 2022, he moved to dupilumab. The FDA had just approved it as a course of treatment for EoE. Phil did not do well with the treatment, and has since gone back to  back to a diet-only course of treatment.    [24:13] Phil says the dupilumab shots did help. He had been having reactions to some foods for years, and after a couple of weeks on the shot, those reactions went away, and he could eat the foods, like avocado and watermelon, again.   [24:39] The dupilumab did him some good, as he returned to some foods that he loved, but it wasn't a long-term solution for him.   [24:50] Ryan shares that he started his Ph.D. in 2019. He felt great, he had no symptoms, and he was following up with his GI every year. With no symptoms, he wasn't scoped until 2025 for insurance reasons. His scope was horrible.   [25:11] His symptoms were in remission, but his esophagus looked terrible. He had to switch up his treatment plan. Ryan advises all listeners to follow up with their GI.   [26:14] Phil says he thinks he's in a very lucky position that what his allergen is, what his dietary preferences are, and how he manifests symptoms, do not significantly impact his day-to-day.   [26:36] Phil's doctor in 2019 had advised him that EoE would impact his work and his business lunches. With the treatment plan he has opted into, it doesn't impact his day-to-day. He says he is very lucky, compared to what other patients deal with.   [26:50] It hasn't impacted his day-to-day, but the problem is, when it does impact something. It's very big, very noticeable, and it's in front of everyone. He recalls his Paris episode. He's very vocal about it. That's why he reached out to APFED.   [27:13] Phil likes talking about it. The only way we know more about it is when we talk about it and share our stories. His colleagues all know he has EoE. They don't understand exactly what it is, but when he's having trouble, they understand.   [27:44] When Phil has an issue, he doesn't tell anyone; he just gets up and walks out of the room and paces the hall, doing his stretches.   [28:09] Largely, it's just letting people know he has EoE. They recognize that he manages it himself, and he's OK.   [28:24] Phil says figuring out your medical treatment plan and balancing your quality of life is different from having a disease that can eventually be treated.   [28:51] This is something you have to deal with the rest of your life. That's going to fundamentally change things, not drastically, but in fairly subtle ways.    [29:18] No matter how comfortable you get, you have to be diligent. You always have to be cognizant of your symptoms and stay on whatever your treatment plan is, whether that's dieting or medication. This will not go away. You're always going to have it.   [29:37] Phil says you have to frame it as a lifelong marathon and find a very sustainable pace. That's where the quality of life is so important. We're human beings. We have to enjoy life. Settle in for the long haul. That's how it will be sustainable.   [30:18] Ryan thinks self-advocacy is important, whether talking with doctors, co-workers, or friends. Take care of yourself and make sure you're doing OK. Make sure you're putting yourself in a position to stay healthy, especially while balancing a career.   [30:45] Ryan says those are great things for our listeners to keep in mind.   [30:49] For our listeners who do want to learn more about eosinophilic disorders, we encourage you to visit APFED.org and check out the links in the show notes below. [30:55] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder. available at APFED.org/specialist.   [31:04] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out APFED.org/shareyourstory.   [31:12] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections.   [31:23] Ryan thanks Phil for joining us today. This was a super interesting conversation. Phil thanks Ryan and Holly for having him on. He is happy to represent on the podcast.   [31:35] Holly thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast Apfed.org apfed.org/specialist apfed.org/connections Phillip Arceneaux, PhD Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables (Edited):   "I took a bite of a roast beef sandwich, and it wasn't going down smoothly. I drank some water. The bite became an impaction. The water stayed in my esophagus, and I started to aspirate." — Phillip Arceneaux, Ph.D.   "The ER doctor told me he was 95% certain I had eosinophilic esophagitis. I had never heard of it. He gave me a quick rundown of what it was." — Phillip Arceneaux, Ph.D.   "I want to give a shout-out to my GI. He spent well over an hour in my initial consult. He explained how [EoE] would impact me, from diet, grocery shopping, and eating at restaurants, because of cross-contamination." — Phillip Arceneaux, Ph.D.   "I never associated the symptoms with eggs. My treatment plan is diet and minimizing egg as much as possible. That is not easy in the United States." — Phillip Arceneaux, Ph.D.   "This is something you have to deal with the rest of your life. That's going to fundamentally change things, not drastically, but in fairly subtle ways." — Phillip Arceneaux, Ph.D.   "No matter how comfortable you get, you have to be diligent. You always have to be cognizant of your symptoms and stay on whatever your treatment plan is, whether that's dieting or medication. This will not go away. You're always going to have it." — Phillip Arceneaux, Ph.D.   Guest Bio: Dr. Phillip Arceneaux is an Assistant Professor of Strategic Communication at Miami University in Ohio, where he teaches mass communication courses focusing on media psychology and content strategy. Phil was diagnosed with EoE in 2019 following an ER visit to UF Health Shands Hospital that required an emergency endoscopy. A Cajun French native of Lafayette, Louisiana, he earned his Ph.D. from the University of Florida and has resided in Cincinnati since 2020.  

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Chukwuemeka Oko, MD, MBA, on clinical trials. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:49] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today's topic — clinical trials — and today's guest, Dr. Chukwuemeka Oko, a Clinical Research and Medical Affairs Professional supporting Duke University Hospital's Department of Gastroenterology and Transplant Hepatology.   [1:33] Dr. Oko explains that he is sharing general, educational information from his perspective and experience, not speaking on behalf of Duke University, nor any industry sponsor, nor any company he has worked for.   [1:50] Dr. Oko's goal today is to help the listeners feel clearer, more confident, and more in control when they are thinking about clinical research.   [2:29] Dr. Oko's work sits mainly at the intersection of clinical research and medical affairs. He helps translate evolving science into practical, patient-centered decisions.   [2:40] From an academic standpoint, he supports clinical trials and evidence generation from feasibility through education.   [2:49] Dr. Oko also engages investigators and thought leaders from industry sponsors in scientific exchanges that lead to insights, study design, and real-world care pathways.   [3:03] Dr. Oko had two reasons to study eosinophilic esophagitis and eosinophilic disease. The first is the patient journey and biology.   [3:11] On the patient side, many people spend a long time seeking answers. Sometimes they feel dismissed before they get a clear diagnosis and a plan that fits their life.   [3:24] On the biology side, eosinophilic disease teaches us a lot about how our immune signals can drive information differently across tissues like the esophagus and airways.   [3:40] Dr. Oko supported an EoE study experience with an industry sponsor in the past. The best research doesn't just test; it helps patients and clinicians make clearer decisions.   [4:12] Dr. Oko explains that a clinical trial is a carefully designed, carefully crafted study in people that answers specific medical questions, most often about safety, effectiveness, or dosing of the study drug or how a treatment should be used.   [4:32] A key structure of a study is a written protocol where safety monitoring is in place, and the defined outcome or results are very reliable. The FDA always oversees clinical trials in the U.S.    [4:44] Dr. Oko often describes a trial as a highly-monitored learning system. It's how medicine moves from "We think this might help" to "We know what helps, for whom, and also at what risk."   [5:09] Dr. Oko says clinical trials usually study what improves patient outcomes, for whom, and at what risk, using methods that we can trust. Trials may evaluate new medicines, devices, dosage strategies, or even procedures.   [5:31] Clinical trials can also study non-drug approaches such as diet interventions, symptom tracking, monitoring tools, and education strategies.   [5:44] Many trials have also included biomarkers, or signals in the blood or tissue, helping to support an EoE diagnosis so that the patients can get treated in an early and effective manner.   [6:36] Dr. Oko says patients sometimes ask him if they are guinea pigs. In reality, trials are heavily regulated and closely monitored, with strict safety reporting requirements. Participants are not guinea pigs.   [7:06] Dr. Oko also hears patients ask if they are "stuck" once they join the clinical trial. No, a trial is a completely voluntary participation, and they can withdraw at any time.   [7:25] Other patients ask if trials are only for people who are out of options. Many trials are designed for earlier stages, especially when the goal is to prevent complications or reduce steroid exposure.   [7:46] The last question Dr. Oko hears a lot is "Will I be in the placebo group?" He says it's an understandable fear. They are asking if they will go untreated in the placebo group.   [8:29] In many trials, a placebo is not the same as "no care". Often, the participants continue the standard-of-care treatment, and the study drug or placebo is added to the standard-of-care treatment.   [8:45] Trials typically involve symptom monitoring and a plan for what happens if the symptoms worsen. There are exit criteria.   [9:01] From the pharmaceutical side, it's the end of treatment once you decide to voluntarily exit the study.   [9:10] Dr. Oko's advice is, if you participate, ask the study team physicians to explain in plain language what you'll receive, what you can continue, and what happens if you flare up. Clear answers are always a part of ethical research.   [10:33] Holly asks what it means to participate in a Phase 1, Phase 2, or Phase 3 trial. Dr. Oko says a Phase 1 trial is focused mostly on the safety and the dosing regimen. It's usually a small group of five to 100 or so.   [10:52] A Phase 2 trial always looks for the drug's effectiveness and continues monitoring safety. It's usually a group of 100 to 300 subjects. They look for meaningful signals of the outcomes derived from the trial.   [11:10] A Phase 3 trial is usually large. It's multi-centered. It's called a complementary study. It involves thousands of patients. It can even be across nations and states.   [11:26] This is where they compare new interventions against a placebo or against a standard of treatment to provide clinical benefits and support for regulatory approval.    [12:03] Participating in any phase of a trial includes fitting the eligibility criteria of inclusion for that particular phase. If you are a good match, you can be in either a Phase 1, Phase 2, or Phase 3 trial.   [12:52] Holly says she knows that a lot of people with EoE or EGIDs are very curious about trials and how to participate in them.   [13:00] Ryan says we have a very active patient community, and everyone's looking for ways to get involved in research and new diagnostics or medications to improve their own outcomes and help everyone else.   [13:35] Dr. Oko says the benefits of participating in a clinical trial include access to potentially disease-modifying therapies years before they reach the market.   [13:47] Another benefit is extraordinarily close medical monitoring. When you're in a clinical trial, you have more frequent visits and more frequent labs than usual.   [14:01] Endoscopies are out of the normal standard of care, but will be more frequent than normal to analyze the efficacy of the study drug.   [14:11] Dr. Oko says one of the risks is the unknown side effects the study drug comes with, because we are still understanding the biology.   [14:21] The time commitment for visits can be more than typical for a patient, especially if there is a long travel time involved. Patients may arrive at 7:00 or 8:00 a.m. They may need to find a place to live nearby, depending on the pace of the trial.   [14:57] Holly lives in Maine, and a lot of the trials are in Boston. It's a lot of travel. For people with any kind of chronic illness, all we think about is money. Holly asks if people pay to be part of a clinical trial.   [15:25] Dr. Oko states that the patients do not have to pay anything to be part of a clinical trial. Patients do get compensated by the trial sponsor for travel, accommodation, parking, and a meal for the days they are onsite.   [16:33] Dr. Oko says that patients tend to bring up insurance. It is a misconception that the study will pay for their standard-of-care medication during the study. Patients need to ask the study team what insurance will pay for and what the study will pay for.   [16:59] Dr. Oko says the insurance usually covers the regular standard-of-treatment, but any other additional treatment, procedures, and visits are all covered by the study sponsor.    [17:29] The study sponsor may ask for an endoscopy to be done six months before the study to determine eligibility for the study. If it is done within a year, the study sponsor will determine if you are qualified. That is part of the eligibility criteria in some cases.   [18:26] Dr. Oko tells patients to always ask questions, like what the schedule of events is in the clinical trial.   [18:35] The schedule of events tells you how many visits are required for you to be part of this study. They will list the activities to be done. They will list the labs you will need at what week. They will list when you need endoscopies, at week one and later.   [19:05] If you exit from the study, if you don't want to participate anymore, you are still required to come on site just to make sure that you are in good shape. Those are called formal visits.   [10:29] Dr. Oko explains that formal visits are necessary for the patient's safety and to make sure that the data points collected in the study will be effective.   [20:01] Patients enrolling in a clinical trial can also ask about the known risks of the symptom monitoring plan. They can ask what is covered and what is not covered by insurance, and what will be considered out of pocket.   [20:20] If patients are in the placebo group, what will happen if symptoms worsen? In the protocol, there is always a rescue plan. If a symptom flares up, the Principal Investigator carries out the rescue plan.   [20:58] The study team is available on a 24/7 hotline. The questions you ask are very important. No question is too small to ask. Every question and every symptom you report is important. You can withdraw at any time, and there is always a follow-up.   [22:19] Dr. Oko says the trial data that has already been collected from part of our eosinophilic studies has led to various FDA approvals of the biologics. We are working  to try to transform EoE from a steroid-dependent or diet-only disease into a position of long-term control.   [22:37] Trial findings have shaped care, expanding evidence-based options, clarifying which patients benefit the most, and improving how we measure our outcomes, the symptoms, and quality of life, as measured by patients' quality-of-life surveys.   [23:06] Quality-of-life surveys are very important for the study team. They help to measure safety, too. The evidence generated from this data leads to insights and improves study design, protocol design, and ultimately, improves patient care.   [23:40] Ryan says the community is interested in clinical trials because they benefit patients, researchers, and clinicians. We're thankful for the clinicians and researchers putting in all the work to make these clinical trials happen.   [24:01] Ryan adds, we're also thankful for the patients who are interested in these trials. For patients who are looking to participate, how can they find clinical trials to participate in and join?   [24:15] Dr. Oko says people can find the website ClinicalTrials.gov. It's an important tool in looking for various clinical research. Scientists are recruiting at a given time. You can use the Advanced Search option to narrow the search by state and criteria.   [24:54] You can always discuss clinical trials with your primary care physicians. You can look for major academic medical centers. Most of them always have clinical research studies going on.   [25:07] Dr. Oko says APFED.org is a very good tool. It always maintains up-to-date trial listings and patient-friendly summaries where patients can read about the studies.   [25:30] Ryan says he's very appreciative of the mention of APFED. There is a link on APFED.org so people can find studies. There are clinical trials listed that people can research more and join.   [25:46] Holly asks Dr. Oko to share advice for listeners who are considering participating in a clinical trial. He shares, "I want each one of you to approach the decision with the same care you would with any major medical choice. Review the Informed Consent Form (ICF)."   [26:23] "The word informed means you should be informed. It's your right to get informed with every line, every detail. The Consent Form can be 30 pages long, but please just know that you are not in a rush to answer."   [26:43] "You can take the Consent Form and discuss it with your friends, your family, your primary care physician, your gastroenterologist, and your allergist and get more information."   [27:00] "When you join an interventional trial, or a registry, your contribution accelerates the science and benefits the entire eosinophilic community."   [27:12] "From my years of reviewing medical charts and supporting new recruitments, I feel patients feel most satisfied when they are fully informed and genuinely partnered with the study team. That's how I partner with the patients. I am always there to help."    [27:40] Ryan says that is great advice for patients, and hopefully, some of our listeners to this episode will go out there and look for clinical trials to participate in or ask their physicians, next time they're getting care.   [27:52] For patients who would like to know more about eosinophilic disorders, we encourage you to visit APFED.org and check out the links in the show notes below, specifically to research opportunities listed on APFED.org. [28:08] If you've been personally impacted by eosinophilic disorders and are interested in sharing your experiences, we encourage you to please check out APFED.org/shareyourstory.   [28:17] Ryan thanks Dr.Oko for joining us today. This was really helpful and insightful, and hopefully, we'll have many new patients interested in joining clinical trials. Dr. Oko thanks Ryan and Holly for having him on and thanks every listener who has joined us.   [28:33] Dr. Oko says it has been a genuine pleasure and privilege for him. He has spent years seeing patients, reviewing their charts, and hearing their stories. We see you, we hear you. Science is advancing rapidly and shaping outcomes. You are not alone.   [30:17] Holly thanks Dr. Oko for his research and clinical trials, and thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast Apfed.org apfed.org/specialist apfed.org/connections apfed.org/research/clinical-trials Duke University Hospital's Department of Gastroenterology Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   "Many people spend a long time seeking answers. Sometimes they feel dismissed before they get a clear diagnosis and a plan that fits their life." — Chukwuemeka Oko, MD, MBA   "On the biology side, eosinophilic disease teaches us a lot about how our immune signals can drive information differently across tissues like the esophagus and airways." — Chukwuemeka Oko, MD, MBA   "In many trials, a placebo is not the same as no care. Often, the participants continue the standard-of-care treatment, and the study drug or placebo is added to the standard-of-care treatment." — Chukwuemeka Oko, MD, MBA   "I tell patients to always ask questions, like what the schedule of events is in the clinical trial." — Chukwuemeka Oko, MD, MBA   "[If a patient exits the study], formal visits are necessary for the patient's safety and to make sure that the data points collected in the study will be effective." — Chukwuemeka Oko, MD, MBA   "From my years of reviewing medical charts and supporting new recruitments, I feel patients feel most satisfied when they are fully informed and genuinely partnered with the study team." — Chukwuemeka Oko, MD, MBA   Guest Bio: Chukwuemeka Oko, MD, MBA

Welcome to yet another EOE side-road episode! I promise to return to regular programming next episode, but I've been sitting on this great conversation for months and this seemed as good a time as any to share it. I had a blast talking with John Davis (QandNotU) author of the great new book on the history of DC fanzines, Keep Your Ear To The Ground. Hope you enjoy the talk as much as I did. Now go order the book!endonendpod@gmail.com

EoE requires long-term management, but what does that look like in practice? In Part 2, Prof. Alex Straumann discusses the realities of treating a chronic, relapsing disease, where remission is achievable but a cure is not. The episode explores how to approach maintenance therapy, manage persistent symptoms despite histological remission, and when to escalate treatment to biologics. It also addresses the practical limitations of dietary strategies and the ongoing challenge of identifying trigger foods. Looking ahead, the discussion highlights key unmet needs in EoE, including the absence of reliable diagnostic tools for food triggers and the potential influence of modern food production on disease prevalence.

Part 2 will be released on Wednesday, the 29th of April. Eosinophilic oesophagitis (EoE) is now a well-recognised condition. But it was not always so. In this episode, Prof. Alex Straumann shares how EoE was first identified, taking us back to the late 1980s when unusual cases of food impaction and eosinophilic inflammation did not fit any known diagnosis. He discusses the clinical observations that led to recognising EoE as a distinct disease, the early case series that defined its phenotype, and the initial treatment approaches that shaped current practice. The episode also addresses key diagnostic challenges that remain relevant today, including the distinction from oesophageal eosinophilia and the limitations of symptom-based assessment.

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Angelica Lackey Mirzoca, MPH, about her research on social vulnerability and EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:51] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today's topic — research on social vulnerability and eosinophilic esophagitis (EoE) — and today's guest, Angelica Lackey Mirzoca, a fourth-year medical student at the University of North Carolina School of Medicine in Chapel Hill.   [1:38] Angelica will start an internal medicine residency this summer and is planning to do a fellowship in GI and liver disease. Before medical school, she studied public health nutrition at UNC and worked in clinical research in eosinophilic diseases.   [1:58] Angelica has been able to use her analytic and public health skills as a member of UNC's EoE Research Group, which is part of the larger Center for Esophageal Diseases and Swallowing, led by Dr. Evan Dellon.   [2:15] Ryan sees Dr. Dellon as his GI. Dr. Dellon has been a guest on the Real Talk: Eosinophilic Diseases podcast. Ryan says Dr. Dellon is wonderful, and many in the community look up to him. It's exciting that Angelica is doing research alongside him.   [2:38] Dr. Craig Reed, part of the EoE Group, who works closely with Dr. Dellon, invited Angelica to a research meeting. She's always had an interest in digestive tract function and diseases.   [2:55] When Angelica was growing up, her father had Barrett's Esophagus. She saw him choking a lot when he was swallowing. It was really scary.   [3:04] Angelica says that being in the EoE space and appreciating the impact that problems swallowing have, not only on the patient's everyday life but on the people around the patient, it was important to her to dedicate her skills and time to EoE.   [3:37] Angelica researched EoE and social vulnerability. Her abstract at the 2025 Digestive Diseases Week was titled "Increasing Social Vulnerability Impacts Presentation and Decreases Treatment Response in Eosinophilic Esophagitis."   [3:58] Angelica explains that social vulnerability is a term to describe the context of people's day-to-day lives and the barriers and obstacles they navigate.   [4:07] In this context, their lived experience has a dramatic impact on people's ability to anticipate and recover from different stressors.   [4:16] Some groups are notably more vulnerable, including kids, older adults, single-parent households, and people who live with physical and mental disabilities.   [4:28] Social vulnerability can be measured qualitatively in terms of socio-economic status and household composition. Other composite scores or variables can serve as quantitative assessments of social vulnerability.   [4:50] Ryan says he does research for graduate school associated with climate vulnerability and infrastructure. He has done some work with the CDC's Social Vulnerability Index and the Climate and Environmental Justice Screening Tool.   [5:20] Angelica says they used the CDC's Social Vulnerability Index in the study. It's a 16-variable composite score with four overarching themes. It's down to the Census Track level. You can associate it with patient zip codes.   [5:37] The SVI can populate into patient charts or a QI database. It was very easy to incorporate into the database.   [5:50] The QI database was developed to help people understand what neighborhoods and communities might need additional support in natural disasters. It includes variables that impact people's health day-to-day.    [6:18] Angelica says health equity is core to everything she does. Participating in the EoE research, it was important to her to consider the social vulnerability, or people's lived reality, and how it impacts their ability to feel empowered to access care.   [6:42] Angelica talks about people not knowing what's wrong with them, choking. Angelica worked in restaurants for 12 years before going to medical school. She listened to a lot of people share their struggles to communicate with the doctors.   [7:09] Holly says when she worked at a major children's hospital in an EoE clinic, they had local patient families and patients that flew in from farther away. The local patients got to see her weekly for feeding therapy. That's when she started doing telehealth.   [8:04] Angelica says the biggest strength of the database is its size. Having 1,400 people and adding every new diagnosis they get at UNC, and every new diagnosis over the past 23 years.   [8:25] There are adult (60%) and child (40%) patients in the database. There is also a good range of social vulnerability among the patients.   [8:42] Ryan notes that one of the findings of this research was that people with higher social vulnerability often experience delays in diagnosis.    [8:52] Angelica says most of the work was postulating on what could be the things that kept people from being diagnosed early, which is important. Angelica hopes that all institutions work to ensure that early endoscopies and biopsies are done.   [9:!2] The new guidelines help. Having that high index of suspicion for everyone, not basing it on demographics or judging by appearance, for whether someone needs biopsies or not.   [9:28] Social vulnerability includes access to care, getting endoscopies and biopsies, having health insurance, and ER care, which is expensive even with insurance. Specialty copays are expensive. Transportation is expensive.   [9:53] Taking time off work can be hard. People take time off to get care for their children, but often not for themselves.   [10:18] Ryan was diagnosed in 2002. Knowledge of EoE was not widespread, but his parents took off work and took him to doctors out of state. They had insurance that covered it. He saw five or six physicians in multiple states before he got a diagnosis.   [10:42] Ryan's situation is not feasible for most people. He says he is fortunate to have gotten to a doctor who had the expertise to diagnose EoE.   [10:51] Ryan says Dr. Emily McGowan was a guest on the Real Talk: Eosinophilic Diseases podcast (Episode 15), speaking on access to specialty care for EoE. She had researched urban and rural populations getting diagnosed with EoE.   [11:05] Her research showed that if you're near a center that can diagnose you, you get diagnosed more frequently, which brings it back to access to care.   [11:19] Angelica's research did not look at the urban/rural divide. That's something that may be a future direction of research. Eighty percent of North Carolina, where the study was located, is rural.   [11:41] The Social Vulnerability Index shows there is the highest vulnerability in more rural areas, especially Eastern North Carolina. Angelica imagines that the urban/rural divide plays a big role.   [11:59] Holly grew up in rural New York. She wasn't diagnosed until her twenties. She had issues, but her parents couldn't take her to be diagnosed. It's reassuring to have someone look into this, because when people do research, things change.   [12:30] Ryan says all of these points make a lot of sense on the diagnostic side. If you are in a more socially vulnerable place, you don't have the resources. You can't go and get that diagnosis.   [12:41] Ryan mentions the study found a difference in symptoms, such as vomiting, nausea, and abdominal pain. Ryan asks what that tells us about how EoE may affect patients differently in these different circumstances.   [12:53] Angelica says the study group was 40% children, and children can present with different symptoms, like belly pain and regurgitation. They're eating different foods and may not be noticing solid foods getting stuck as often.   [13:20] Anglica says there can be a lot of overlap with GERD and EoE. There may be some gut-brain interaction. There's a lot of psycho-social stress among people who have higher social vulnerability. That often manifests with the motility of the GI tract.   [13:56] Angelica says their database doesn't include people who have eosinophilic GI diseases outside of EoE.   [14:13] Holly says the study also showed that patients with higher social vulnerability were less likely to respond to swallowed steroid treatments, even after accounting for factors like age and insurance. Holly asks Angelica to explain this finding.   [14:34] Angelica says this is really important. The way you manage EoE is very patient-specific. The new guidelines give jurisdiction to you, as a patient, and your provider in deciding other things.   [14:51] You can choose dietary therapy first, or topical steroids first. People can take PPIs. They used to be required first, but now they are not. Topical steroids, the ones that you swallow, are common. Cutting out foods from your diet can be challenging.   [15:17] Some people don't love the idea of taking medicine daily in their twenties or thirties.   [15:32] The fact that you would start a patient on something and not see a histologic response opens up the door to follow-up questions of why it is not working.   [15:50] Holly says the pattern wasn't shown in people using diet-based treatments and asks what might explain that difference. She mentions that dietary elimination groceries are expensive, compared to having good insurance covering the medicine.   [16:14] Angelica says Dr. Dellon and part of the group did a study a couple of years ago looking at the cost of dietary elimination for patients. There was a lot of heterogeneity in diet elimination. It wasn't all six food elimination. It was different for everybody.   [16:36] They found that it was cheaper for patients to do elimination diets than to pay for the compounded medicines.   [16:44] Angelica was doing interviews recently for her residency, and a patient told her that when they were first diagnosed, it was hundreds of dollars for their compounded medicine, and they couldn't afford it.   [17:00] Angelica says diet therapy can be different for children versus adults. Adults are sometimes very motivated to try diet therapy. The team wondered if that motivation could influence their outcomes or their ability to adhere to eliminating things.   [17:23] Holly remembers sitting with the social worker at the Children's Hospital of Colorado GDP Clinic, talking about explaining when you're dairy-free, looking at ingredients like whey. There's so much that comes with it. It's confusing.   [17:41] Ryan says he has used swallowed steroids; he's now on a biologic. He's done diet elimination. Groceries are expensive, but there are ways to work around that. Insurance can be frustrating with step therapies, so sometimes diet is the best option.   [18:18] Ryan asks if a delayed diagnosis can impact symptom severity and disease progression, and therefore, the response to treatment options. Is the later diagnosis you see with more socially vulnerable populations playing into the treatment response?   [18:34] Angelica says the delayed diagnosis can lead to a more acute change in the lining of the esophagus, to become more fibrotic and tougher, and the esophagus loses some of its natural flexibility. She says we do wonder if that can be a component of it.   [18:59] Angelica says that's one of the limitations of the study. We need follow-up information to look longitudinally at some of the more recent endoscopies and the outcomes for these patients. She says that's something that we hope to do.   [19:16] Ryan asks about information about disease severity within the data set. Angelica says they have information on the severity scores of patients.   [19:54] The data showed that patients with higher social vulnerability had more of a mixed inflammatory phenotype compared to people with lower social vulnerability.   [20:09] Ryan notes that there are so many different angles to look at. He says in doing research, especially when working with medical charts, you can't get everything for such a large population. What you're able to figure out from all this is so cool.   [20:24] Holly says she was the person who ended up in the ED with a food impaction, and that could have been avoided. She loves that Angelica is researching it.   [20:44] Holly asks what the key takeaways are for clinicians from this research.   [20:54] Angelica says a key takeaway for all clinicians caring for people with EoE is that you have to take into consideration the vulnerabilities that patients are navigating. We operate within a complicated health system that needs to be more efficient.   [21:14] Angelica says you get more messages daily and have a lot of competing needs. It can be easy to assume that this patient in front of me is doing well enough and has access to what they need to be supported.   [21:31] Patients having space to ask a question about something important to them can be validating and affirming. Whether patients want to share at that encounter, or at the next. It normalizes that we humans need help navigating life, because it's hard.   [22:20] Holly talks about providers sitting down with you and asking if you have access to drive to this specialty pharmacy, or if you live in a home where this medicine can be delivered to you safely. It's nice to have someone ask what's going to work best for you.   [22:49] Angelica agrees. She says the Social Vulnerability Index can be incorporated into Epic. You can look at a high score and make sure the patient has a social worker and care management. Make it standard procedure to discuss it with patients.   [23:10] Ryan explains to listeners that Epic is where all patient information and records are stored. Holly mentions that her office doesn't have Epic, and she misses having electronic medical records.   [23:34] Ryan says as a patient, it's impactful that his healthcare team considers his life outside the doctor's office and that he is sticking with his care and can find care that works well for him.   [24:11] Angelica says it's important that patients understand that the spaces they are in outside the clinic do impact their health. Up to 80% of our health is influenced by things outside of the hospital and clinic, like health behaviors, exercise, smoking, and alcohol.   [24:36] Angelica says your physical environment is so important: the quality of your housing, your carpet, the pollution in your air, working in a factory, working with animals, that's important to consider.   [25:00] Angelica says your general stress level is important. That can be worse when you live in an environment that's very noisy or where you don't feel physically safe. Those are very important things to share with your doctors.   [25:25] Ryan speaks of research he does on California wildfires, where the power might be turned off for days at a time to avoid starting fires, which can spoil refrigerated foods or medicines that are difficult to replace. Where you live has major impacts.   [26:31] Angelica says something we want to do is to look at a pooled subset of around 80 patients to see what is going on with their swallowed steroid treatment. You can discern quite a lot from a chart review by the questions patients send to their team.   [26:56] Questions might be things like confusion about how to take the medication, any trouble with insurance claims, or if the medicines are touching the throat the way they're supposed to be. Is the throat not getting adequate exposure to the medicine?   [27:20] A thought the team had was that if there's increased chronic stress, that increases the allostatic load, and that can impact total inflammation. Will that make the mucosa in some people inherently resistant, and do they need bigger doses to treat the disease?   [27:42] Angelica says we're also going to incorporate the jobs they are working and the potential exposures they have there. How far they live from UNC Main, and if they are living in a rural county or not. They are trying to identify specific areas to help patients.   [28:08] Ryan speaks of the benefits and drawbacks of integrating AI into patient records. In chronic cases, the AI summaries are skimming over important details.   [28:45] Angelica says they are using AI at UNC, a lot of times when people are being admitted to the ED. It's also being used in the clinic. Angelica sees that AI edits out important details of a patient's social history.   [29:27] Holly says her office is trialing an AI, and she has learned she can teach it what is necessary to include in the notes. It can be good if you use it appropriately and train it.   [30:03] Ryan says his father recently had a prescription denied because the AI said he didn't have the disorder. He was diagnosed 20 years ago. It took several phone calls to override the AI and see in his chart that he needed this medication.   [30:54] Angelica says she hopes that this study can be the beginning of a conversation.   [31:00] Health equity is important in all of medical care. Angelica hears more about it in a primary care setting. She looks forward to health equity becoming the core of GI and liver diseases and to how we approach that care.   [31:20] Having the conversation can be the beginning of advocacy. It will be the beginning of having medications be more affordable, so you do not have to try and fail so many medications before you get the one that works for you.   [31:40] Angelica says every hour of not having the medication that works for them is hard for people. This research was a relatively simple project that answered some very important questions and left us with many more important questions to answer.   [32:00] Angelica hopes it shows the feasibility of using these tools that we already have in the community, to start making everyone's health better, and not just people who have access.   [32:15] Ryan says we're excited that you're here talking about this with us. We'd also like to congratulate you on receiving an award last year at Digestive Disease Week.   [32:23] It was an honor to recognize you with the American Gastroenterological Association APFED Abstract Award for your outstanding research that we've been discussing today.   [32:31] The abstract, "Increasing Social Vulnerability Impacts Presentation and Decreases Treatment Response in Eosinophilic Esophagitis," was selected in recognition of its significant contributions to the field.   [32:47] Angelica says it was such an honor. It means a lot to her because she conceptualized and executed this project, with so much support from Dr. Dellon and the larger EoE Group. She says she couldn't have done it without them.   [33:05] Angelica says, most importantly, the project was a small win for health equity. She hopes that it starts a lot of important conversations and that we continue to be more attuned to the social drivers that impact our really vulnerable patient population.   [33:30] Angelica's final words: For patients, caregivers, and loved ones, I encourage you to ask questions. There are no stupid or silly questions. If you feel silly asking, how you feel is valid, but it's really important that you get your questions answered.   [33:55] It's OK to say you don't know what questions to ask. You are the expert on what you need and what is important to you. Ask questions, and say when you don't know what to ask.   [34:40] Holly thinks that's great for people with a new diagnosis, or children. Ask, what would you ask, if you were in my shoes?   [34:54] Ryan thinks this is a great start for listeners who are newly diagnosed. If you'd like to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes.   [35:09] If you're looking for a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at APFED.org/specialist.   [35:18] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections.   [35:28] If you've been personally impacted by eosinophilic disorders and are interested in sharing your experience, please check out APFED.org/shareyourstory.   [35:37] Ryan thanks Angelica for joining us today. This was a super insightful conversation. Angelica thanks Ryan and Holly for having her on. It was a pleasure getting to talk today.   [35:54] Holly thanks Angelica and also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast Apfed.org apfed.org/specialist apfed.org/connections apfed.org/research/clinical-trials Angelica Lackey Mirzoca, MPHpubmed.ncbi.nlm.nih.gov/41551662 apfed.org/blog/may-2025-research-roundup-ddw-edition gastro.org/news/introducing-the-2025-aga-research-foundation-awardees   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   "When I was growing up, my Dad had Barrett's Esophagus. I saw him choking a lot when he was swallowing. It was really scary. And so, being in the EoE space…was really important and attractive to me." — Angelica Lackey Mirzoca, MPH   "We used the CDC's Social Vulnerability Index in the study. It's a 16-variable composite score with four overarching themes. It's down to the Census Track level. You can associate it with patient zip codes." — Angelica Lackey Mirzoca, MPH   "Health equity is core to everything I do. Having the opportunity to participate in the EoE research, I felt it was important that we considered the social vulnerability, or people's lived reality, and how that impacts their ability to access care." — Angelica Lackey Mirzoca, MPH   "Most of the work was postulating on what could be the things that kept people from being diagnosed early, something that's really important." — Angelica Lackey Mirzoca, MPH   "I encourage you to ask questions…It's OK to say you don't know what questions to ask. You are the expert on what you need and what is important to you. Ask questions, and say when you don't know what to ask." — Angelica Lackey Mirzoca, MPH   Guest Bio: Angelica Lackey Mirzoca, MPH

For years, Samantha adapted quietly. She chewed longer, sipped water with every bite, avoided certain foods, and assumed the discomfort was just reflux. It wasn't. In this patient voice episode, Samantha shares the moment she realized something more serious was happening — and how that journey led to a diagnosis of eosinophilic esophagitis (EoE). She opens up about the subtle symptoms many people overlook, the daily adjustments she made without realizing it, and what finally pushed her to seek answers. If swallowing sometimes feels harder than it should, this story may sound familiar. This podcast is for educational purposes only and is not a substitute for medical advice. Always consult your healthcare provider regarding your symptoms or condition. This educational initiative was developed with support from Takeda.  

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Jessica Grady, a patient advocate living with EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today's topic — eosinophilic esophagitis and life transitions — and today's guest, Jessica Grady, a patient advocate living with EoE.   [1:35] Jessica is a mom who was diagnosed with EoE in her 20s, after years of unexplained symptoms: acid reflux, GERD, food impaction, and anxiety around food. For about six years, Jessica searched for answers while dealing with these issues.   [2:00] Since then, Jessica has tried PPIs, steroids, and two clinical trials. She was always interested in the research, so being part of it has been valuable to her. There's a lot of work involved in clinical trials, and it's not easy.   [2:29] Jessica is managing her condition and has hit her second endoscopy with remission, with dupilumab. That's exciting, after her long journey. It has taught her the importance of advocating for yourself and staying hopeful with a chronic condition.   [3:01] After college, Jessica was going out with friends, and had pain almost like ulcers in her stomach. She thought maybe she was going out too much.   [3:20] One day at lunch, water got stuck. Jessica says it was like gargling; it wouldn't go down. Finally, it went down, and she took a bite of food, and that got stuck. That was her first episode. After that, Jessica has had food impactions as her main symptom.   [3:54] Jessica says it's quite a reality check when you're choking on water. How is that even possible? Once that happened, Jessica kicked herself into gear and had an endoscopy.   [4:12] Food impaction is Jessica's number one symptom. She has been to dinners where it happened, and she calmly excused herself from the table until she could finally get the food to go down.   [4:34] As Jessica aged, her food impactions started getting longer. That was terrifying, especially as a Mom needing to take care of her baby.   [4:52] Holly shares how she had symptoms from infancy and all the way through her childhood, and it was diagnosed as anxiety, until she started working in an EoE clinic and recognized her symptoms. Getting an EoE diagnosis is often very challenging.   [5:40] Jessica went to three different hospitals in her area. She didn't know what kind of doctor to look for. She went to a GI, got an endoscopy, and woke up with a fat lip. The doctor told her not to have caffeine and start on PPIs.   [6:11] There was no mention of a biopsy or EoE. She was told she had bad acid reflux and ulcers.   [6:35] The PPIs didn't help. She still had acid reflux and impactions. She was still uncomfortable.   [6:47] Jessica switched to another healthcare system and got closer to the answer, with more endoscopies and testing, but there was no research with it.   [7:02] Finally, Jessica switched to where she is today. There is a doctor and research. They run clinical trials. She gets the latest and greatest updates. She feels like it has helped her get to where she is today.   [7:21] Jessica said the doctor knew what to look for. The moment she described her symptoms, the doctor said it would need to be confirmed with a biopsy, but she has EoE. Jessica asked what now?    [7:34] Ryan says, we hear a lot of difficulty with diagnosis because not all doctors know what to look for. If they see ulcers or other common symptoms that people with EoE have, they can very easily misdiagnose. It's a tricky diagnosis to make.   [8:03] Jessica says that before her EoE diagnosis, doctors told her she had GERD, acid reflux, ulcers, and anxiety around food. They asked what her food choices were and if she was taking too big bites.   [8:12] Jessica asked the doctors why she always needs to have a bottle of water with her, and why she feels panic if there's something like a soft pretzel. They told her she was hyperactive and had anxiety. Jessica felt that that was not making sense.   [8:40] That is why Jessica feels it is so important to advocate. There's a lot of time involved when you're misdiagnosed. You get your hopes up and have lots of highs and lows. It's exhausting.   [8:53] Ryan says that when you do get diagnosed, you can start to treat the underlying condition properly, make progress, feel better, and feel like you're being listened to.   [9:30] Jessica's current course of treatment is PPIs and dupilumab. She's learned her food triggers. Being on the biologic means she doesn't have to worry as much about her triggers, but they can still cause symptoms. She doesn't eat nuts or pineapple.   [10:16] Jessica used to eat cottage cheese if she had acid reflux, but now she knows dairy is one of the worst things to have. She does her best to be mindful. She's really thankful that she's in remission now and can be like everyone else at the dinner table.   [11:04] Holly mentions that there are many trigger foods. It's patient-dependent. Dairy is the number one trigger, but we all have different little triggers, like pineapple. Holly's EoE is triggered by any melon. Ryan's EoE is triggered by apples and rice.   [11:48] Holly avoids all trigger foods for fear of an impaction or throwing up.   [12:27] Jessica says, if she wants to have an ice cream cone and live her life like everyone else, she will, but then she has guilt and wonders if it will do something to her later. She limits the high-allergy foods. If she has ice cream, she won't have cheese.   [13:06] Jessica monitors her food as much as possible. Her GI tells her that, since she's in remission, she doesn't need to be that careful. But she has anxiety because you never know if she will have a problem.   [13:21] Since Jessica has been in remission, she has recently gone from weekly to bi-weekly injections. But she is now hyper-vigilant for symptoms and starts each day with a sip of water to see how it goes down and if there are any bumps in the road.   [14:21] Jessica's GI had told her that she was only allergic to a few nuts and she could try other kinds of nuts. She tried cashews once and had a reaction. She reported it to her GI, and then he told her to avoid all nuts.   [14:47] Jessica recently went to her allergist to be retested for common allergies. The tests came back negative for every allergy. She doesn't know if that was because of being on the biologic treatment.   [16:01] Jessica's profession is clinical trial technology. That helped her to understand what a clinical trial is, how to enroll, and patient recruitment. When she went to a hospital with GI research, she asked about it. They had openings, and she enrolled.   [16:33] Jessica was interested in clinical trials because she was desperate for options and answers. Also, the cost of endoscopies adds up. Clinical trials are free. Sometimes you get paid. That was a big win for Jessica.   [17:09] When there was an option for a new treatment, she jumped at it both times. She participated in two trials. She didn't make it through them.   [17:21] In the first trial, Jessica's biopsies had two out of three criteria the trial was looking for, although she had active EoE.   [17:33] In the second trial, Jessica had a provision device she used to write a daily diary entry in. She was pretty far in, but then she had tech issues and emailed for help. That's not part of the protocol. If your diary is not logged correctly, you are out of the trial.   [17:57] That trial was an oral medication. She doesn't know if she was on the placebo or not. Jessica is always open to trials. She thinks they are very beneficial.   [18:46] After leaving the first trial, when Jessica's biopsies didn't meet the criteria, Jessica asked the clinical research nurse to keep her in mind for future trials, so she learned of the second trial.    [19:07] Jessica says she put a lot of time and effort into the second trial, with check-ins and multiple endoscopies, until she was dropped from it. It was challenging and very disappointing when she was dropped from the second trial. She was hopeful.   [19:40] At that point, Jessica changed course and started corticosteroid treatment. The inhaler didn't work. Then she did the slurry mix, and that didn't work, and then she did the injections.   [20:09] Ryan notes that Real Talk has talked to many researchers who have run clinical trials. Every time, they say they are so grateful for the community volunteering their time.   [20:21] They're very aware that some difficulties and challenges come up. Not all patients can make it to the end of the trial, whether that's on the research side or on the patient side.   [20:34] Ryan says the eosinophilic-associated disorder community, in general, is so willing to volunteer their time and participate in these things, and further research for the overall community. Ryan says it's good to hear that Jesica tried to participate.   [21:01] Jessica says she thinks it's valuable. She recommends that anyone who is interested should look into it, especially if you know you have something that's for the rest of your life. What do you have to lose?   [21:12] Jessica says she has something that can't be cured, so what is she going to do? She wants to be the tester. She wants to find something to help her. She doesn't want to choke anymore.   [21:29] Jessica wasn't a mom when she started in these clinical trials. Now she is a mother of two; she explains what conditions she would require to participate in another trial. She wants the opportunity for telemedicine visits except for when she needs a test.   [23:43] There are a lot of challenges. Jessica says that's why she is so passionate about patients and getting therapies to them. It's hard to try to do it all.   [24:24] Jessica was able to get off dupilumab when she was pregnant. She had acid reflux but no other symptoms, choking episodes, or food impactions during her pregnancy.   [25:05] Three months post-partum, it came back with a vengeance. Jessica had her first food impaction that was over 40 minutes. Earlier food impactions had been for seconds or a few minutes. It was terrifying.   [25:27] At three months post-partum, Jessica had to go back on dupilumab. No one could tell her it was safe for her child while breastfeeding. The doctor said it should be digested. It should be OK. "Should" is hard for a post-partum new mother to hear.   [26:08] In Jessica's second pregnancy, she confidently got off dupilumab again, and everything was great. Exactly three months after the birth of the second baby, she had a 45-minute food impaction.   [26:24] She thought she had to go to the ER. She was at the sink trying to get the food up, while her husband took care of the children. Finally, she recovered from the food impaction.   [27:12] Jessica had some spare dupilumab in the refrigerator from before her pregnancy. She called her GI, said she needed to go back on the dupilumab, and started it that day. On dupilumab, she hasn't had a food impaction since.   [27:52] Jessica looks at dupilumab as her lifeline. She gets to be like everybody else when she's on it. She is blessed and thankful for it. It wasn't approved for EoE until 2022. It has been a long ride to figure out how not to choke.   [28:12] Now that Jessica knows she has something that's saving her, changing from weekly to bi-weekly dupilumab injections is scary. If I don't do it this week, are we sure I'm not going to start choking again? Jessica thinks the next impaction will last an hour.   [29:06] Jessica advises people starting a family to make sure they have a care plan in place. Your doctors, family, and others need to be aware of and understand what's going on with you.    [29:19] Make sure that you're communicating. This is especially important for a woman with a GI and an OB. Make sure everyone's speaking the same language. When it comes to GI and allergy, Jessica wants to ask if they can get together on a call.   [29:41] Prepare safe and easy foods for post-partum. People may be dropping off food. Be mindful of what is safe for you to eat. Ask for a lot of help and try to have your care plan together.   [29:57] Jessica was having calls with her GI doctor when she was planning, once she was pregnant, during pregnancy, and post-partum. There was never a time when she wasn't doing check-ins to primary care, allergy, and GI.   [30:14] Have a care plan and know your trends. Jessica didn't realize the post-partum choking episode would repeat after the second birth. She thought it was a one-off. [30:38] If you have an episode, your body is telling you something. Follow the protocol you made for yourself.   [30:47] Once that food impaction happened the second time, Jessica knew exactly what to do because it had happened before. The problem was that she hadn't been proactive in starting on dupilumab before the food impaction happened.   [31:03] Jessica says her first dilation could only get to 12, so she had to have a second dilation to get to a normal 15.    [31:29] Jessica says she thought she was immortal. It only happened once; she supposed it wouldn't happen again.   [32:16] Holly says she loves to travel. When she travels, she brings along a medical emergency kit. The quality of life matters.   [32:36] Jessica watches for signs of EoE in her children. They're not showing signs of it. Anything could happen, and she takes it day by day. If the time comes and it happens, Jessica will know what to do, rather than going in clueless.   [34:44] Ryan says his parents didn't believe he had EoE before he was diagnosed.   [35:08] Jessica's last words: I would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You've got to be comfortable in the unknown.   [35:23] There's a lot of innovation and research right now, so I think more answers are coming. Be aware. See what's going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it's unpredictable.   [35:50] That's the most challenging part of having EoE. Always trust your gut. Advocate for yourself. It took me years to get answers, but persistence is what got me there.   [36:05] Ryan says, that's a great outlook. Keep looking for new answers. Take it one step at a time. Be mindful and on the lookout.   [36:14] Ryan thanks Jessica for joining us today and sharing about your experience and your journey with EoE. I think this will be a super helpful conversation for our listeners.   [36:22] For our listeners who would like to learn more about eosinophilic disorders, please visit apfed.org and check out the links in the show notes.   [36:29] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at APFED.org/specialist.   [36:37] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections.    [36:48] Ryan thanks Jessica for joining us today. This was a great conversation. Jessica thanks Ryan and Holly for having her on.   [36:59] Holly thanks Jessica and also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast Apfed.org apfed.org/specialist apfed.org/connections apfed.org/research/clinical-trials   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   "I'm managing my condition and have hit my second endoscopy with remission, with dupilumab." — Jessica Grady   "It's quite a reality check when you're choking on water. How is that even possible? Once that happened, I kicked myself into gear and had an endoscopy." — Jessica Grady   "If I want to have an ice cream cone and live my life like everyone else, I will, but then I have guilt and wonder if it will do something to me later." — Jessica Grady   "I advise people starting a family to make sure they have a care plan in place. Your doctors, family, and others need to be aware of and understand what's going on with you." — Jessica Grady   "I would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You've got to be comfortable in the unknown." — Jessica Grady   "There's a lot of innovation and research right now, so I think more answers are coming. Be aware. See what's going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it's unpredictable." — Jessica Grady   Guest Bio: Jessica Grady, Patient Advocate

Hot flashes aren't the whole story. Perimenopause and menopause can impact your gut, hormones, and chronic illness symptoms - you're not imagining it. Listen to this episode of The Gut Show as we talk with Casey Farlow about what menopause is, how to get support, and more!   In this episode, we cover: Perimenopause and menopause [3:20] Introducing our guest [4:40] What is menopause? [6:01] Changes to gut health [8:53] Other symptoms [11:14] Monitoring estrogen and progesterone [13:53] Birth control [15:41] Can you stabilize hormones? [17:54] Hormone therapy & breast cancer [20:23] Is it hopeless? [21:30] Chronic illness & things getting worse [26:35] Hormone therapy and breast cancer [30:12] Who monitors this? [32:18] Labwork [35:20] Bone density screening [38:11]   Mentioned in this episode: MASTER Method Membership FREE IBS Warrior Summit Take the quiz: What's your poop personality?   About our guest: Casey Farlow, MPH, RDN is a registered dietitian and nationally recognized perimenopause nutrition expert who helps women stop fighting their bodies and start working with them during the hormonal transition of perimenopause. As the founder of The Perimenopause Nutritionist, Casey supports women struggling with stubborn weight gain, fatigue, sleep disruption, mood changes, and food frustration through hormone-aware nutrition, blood sugar regulation, and nervous system support. Connect with Casey   Thank you to our partners: ModifyHealth is the leader in evidence-based, medically-tailored meal delivery offering Monash Certified low FODMAP, Gluten free, and Mediterranean meals - expertly crafted to help you achieve better symptom control AND improve overall health.  The best part? They make it easy by doing all prep work for you. Simply choose the meals you want, stock your fridge or freezer when meals arrive at your door, then heat and enjoy when you're ready. Delicious meals. Less stress. Complete peace of mind. Check out modifyhealth.com and save 35% off your first order plus free shipping across the US with code: THEGUTSHOW.   mBIOTA is the next generation of the elemental diet. Developed with leading gastroenterologists and food scientists, it's the first formula that's both clinically effective and genuinely easy to drink. Pure, easily absorbed nutrients are essential, but the mBIOTA difference is in the details: from their proprietary Amino Taste Modification Technology (ATMT), to their fully vegan and gluten-free ingredients, mBIOTA provides balanced daily nutrition backed by science.  The result is a game-changing medical-grade formula that helps restore GI function in patients with SIBO, IMO, IBS, Crohn's, EoE and more. Learn more at mbiota.com and save 20% off their 2 week protocol with the code GUTIVATE.   FODZYME is the world's first enzyme supplement specialized to target FODMAPs. When sprinkled on or mixed with high-FODMAP meals, FODZYME's novel patent-pending enzyme blend breaks down fructan, GOS and lactose before they can trigger bloating, gas and other digestive issues.  With FODZYME, enjoy garlic, onion, wheat, brussels sprouts, beans, dairy and more — worry free! Discover the power of FODZYME's digestive enzyme blend and eat the foods you love and miss. Visit fodzyme.com and save 20% off your first order with code THEGUTSHOW. One use per customer.   Connect with Erin Judge, RD:  Instagram TikTok Work with Erin FREE symptom tracker  

Toxins, chemicals, environmental exposure... How much is too much, how much should we worry, who should be concerned? The goal isn't to be afraid, but to understand how this fits into IBS management - listen to this episode of The Gut Show to learn more about TILT theory without going down a fear-based rabbit hole.   Mentioned in this episode: MASTER Method Membership FREE IBS Warrior Summit Take the quiz: What's your poop personality? MCAS episode   Thank you to our partners: mBIOTA is the next generation of the elemental diet. Developed with leading gastroenterologists and food scientists, it's the first formula that's both clinically effective and genuinely easy to drink. Pure, easily absorbed nutrients are essential, but the mBIOTA difference is in the details: from their proprietary Amino Taste Modification Technology (ATMT), to their fully vegan and gluten-free ingredients, mBIOTA provides balanced daily nutrition backed by science.  The result is a game-changing medical-grade formula that helps restore GI function in patients with SIBO, IMO, IBS, Crohn's, EoE and more. Learn more at mbiota.com and save 20% off their 2 week protocol with the code GUTIVATE.   FODZYME is the world's first enzyme supplement specialized to target FODMAPs. When sprinkled on or mixed with high-FODMAP meals, FODZYME's novel patent-pending enzyme blend breaks down fructan, GOS and lactose before they can trigger bloating, gas and other digestive issues.  With FODZYME, enjoy garlic, onion, wheat, brussels sprouts, beans, dairy and more — worry free! Discover the power of FODZYME's digestive enzyme blend and eat the foods you love and miss. Visit fodzyme.com and save 20% off your first order with code THEGUTSHOW. One use per customer.   ModifyHealth is the leader in evidence-based, medically-tailored meal delivery offering Monash Certified low FODMAP, Gluten free, and Mediterranean meals - expertly crafted to help you achieve better symptom control AND improve overall health.  The best part? They make it easy by doing all prep work for you. Simply choose the meals you want, stock your fridge or freezer when meals arrive at your door, then heat and enjoy when you're ready. Delicious meals. Less stress. Complete peace of mind. Check out modifyhealth.com and save 35% off your first order plus free shipping across the US with code: THEGUTSHOW.   Connect with Erin Judge, RD:  Instagram TikTok Work with Erin FREE symptom tracker

In this episode, I'm joined by Distinguished Laureate Professor Nicholas Talley, one of Australia's most cited medical researchers and a global leader in neurogastroenterology, mucosal immunology, and disorders of gut–brain interaction. Professor Talley shares his expertise on eosinophilic esophagitis (EoE), an emerging immune-mediated condition changing how we understand gut inflammation, diet, and the microbiome.We'll explore what causes EoE, how it's diagnosed and treated, and what the latest research reveals about its connection to diet and environmental factors.  Whether you're a clinician, researcher, or simply interested in gut health, this episode offers clear, evidence-based insights into a rapidly evolving field. Please enjoy my conversation with Professor Nicholas Talley.

I'm always excited when a Lungfish release comes up on the ledger! Perhaps too excited...? Anyhow, this show I'm joined by Adz Clayton (Holiday) in the cohort chair and we go all the way down the wormhole on this album, and the band in general. Throw the year's top fives in the mix in the intro and you end ups with a ridiculously (even by EOE standards) long episode. Thus cleaving it in two. Consider this the Pass and next time we'll finish up with an interview and the Stow.

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Beth Morgan, a medical billing advocate and consultant, on navigating your medical bills. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:51] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:12] Holly introduces today's topic, Medical Billing, and today's guest, Beth Morgan, a medical billing advocate and consultant.   [1:31] Beth says a medical billing consultant is an individual who assists someone with medical bills to make sure that they are accurate and correct, and that they match the medical records, which are notes that the provider makes.   [1:48] The medical billing consultant or advocate can make sure the bills are paid correctly and that the charges are within the reasonable prices for the treatment area.   [2:19] Beth explains how medical insurance covers healthcare costs. It protects the patients and providers from very high expenses. It can also possibly help with the stress of navigating healthcare systems.   [2:36] The goals of medical insurance are to help cover patient costs for treatments, preventive care, and prescriptions. It can also provide resources for telehealth visits or support visits, if needed.   [2:48] With a telehealth visit, you, the patient, have to make sure that your insurance plan covers and allows it. Sometimes, the cost of a telehealth visit can be more than if you were to go to the office.   [3:27] Beth says most people look at what insurance will cost them per month. They fail to look at their yearly deductible, per person or per family, their prescription costs, or what it will cost to see a specialist. They don't consider what therapies will cost them.   [4:08] Beth had a client whose insurance company would only cover in-state providers. If she went out of state, she wouldn't be covered; even an emergency might not be covered. You have to look at the "nitty-gritty" of the policy.   [4:32] Beth says the biggest things are the deductible and copay, or co-insurance. Don't just look at the cost. Most people will take out the $10,000 or $5,000 deductible plans, saying it only costs $75 for the entire family. What does it actually cover?   [5:00] You don't want sudden surprises when you get to the emergency room. You want to know what your copay will be when you go into an emergency room.   [5:11] Holly agrees with Beth and notes that Real Talk listeners have chronic illness. Some have multiple illnesses. When you're selecting insurance plans, those are the things you have to look into.   [5:27] Patients with EoE often need endoscopies and other specialized procedures. Holly asks for tips on how someone can know what an endoscopy or other procedure will potentially cost.   [5:41] Beth says to ask the doctor what the CPT code is. That's the code that describes the treatment. Then look up that CPT code on the insurance company website. They will show an estimated cost for that treatment, for a rough idea of the cost.   [6:10] Keep in mind that it will not tell you what the providers will charge or what the hospital fee will be.   [6:21] Holly says she has EoE and MS. She asks a social worker for the CPT code for every procedure so she has a record to double-check when the bill comes. The CPT code is the key.   [6:50] Holly is a speech pathologist who does feeding therapy. She says to look at your plan to see if therapy is a copay or if it goes toward your deductible. If it goes toward your deductible, it will be very expensive until you meet that deductible.   [7:10] People living with an eosinophilic disorder may find themselves in the ER for a variety of reasons. Holly was there this week with a food impaction. For others, it could be a pain flare or an asthma attack.   [7:26] Holly asks how families can be prepared for medical bills related to emergency care.   [7:40] Beth replies, You also have on that bill the ER doctor and the ambulance fee, including mileage, which must be accurate or rounded up to the next mile. Track the mileage in your car.   [8:43] Who will be transporting you: volunteers from the fire department, a hospital ambulance, or an outside ambulance? Are you going under Basic Life Support or Advanced Life Support?   [9:05] Once you get to the ER, have someone else with you who can advocate for you. Sometimes, staff will bring you forms to sign before they treat you. If you're in a lot of pain, you're not in your right mind to sign those forms; you're only thinking of your pain.   [9:53] Ryan says a friend of his went to his doctor's office for a prescription refill. Typically, he pays a $25.00 copay per visit. This prescription refill visit was not covered in the same way as other visits, and he received a bill for over $200. The insurance company only covers maintenance appointments.   [10:48] Beth says an Explanation of Benefits (EOB) comes from your insurance company. It shows what the doctor charged, what the insurance company paid, and what you owe.   [11:07] A medical bill is what your provider sends you. Beth always asks the provider to send the bill after the insurance company has paid. That way, you know the insurance company has paid on the bill, and there are no surprises.   [11:25] When the provider bills you, the insurance company may have paid something on it, or it may have applied the bill toward your deductible or copay.   [11:44] When a patient receives a provider bill, Beth says they can go to a company called FAIR Health to see today's rates of what should be charged. Insurance companies negotiate rates with providers.   [12:04] Beth says that an out-of-network provider of physical therapy can charge, for example, $160 a visit, and you have to pay out-of-pocket. They can send it to your insurance company, and the insurance company may only pay 30% of the charge.   [12:20] Call the insurance company to ask questions about your insurance. Utilize the estimated costs feature on your insurance company's website.   [12:32] Beth says she always keeps the page of her health insurance booklet that shows what a PCP office visit, or outpatient specialist visit, will cost. Most people get the book and toss it out, but that page is very helpful.   [12:53] If you go into the emergency room, you might have a $300 copay just to be seen, but if you ask them to bill you after they bill your insurance company, most places should respect that.   [13:11] Beth says that most of the time, the red flags that she looks for on medical bills are supply items. Most supply items are included in the cost of the hospital visit. She says a surgical hospital visit is like an oil change.   [13:42] Beth compares a surgery to an oil and filter change. When you go in for surgery, the drape they put over you is included. You only pay for the supply items you walk out with.   [15:15] Beth says, If there's something wrong on your medical bill, your insurance rep may not know the answer. Most insurance companies have outsourced their billing questions. Start with the billing department of the hospital.   [15:35] Ask, "Why did you bill me for an X, Y, Z, when I didn't have an X, Y, Z? I had an A, B, C. Can we re-examine this, please?" Another thing is to go back to your provider.    [15:52] The provider can request medical notes, which are part of your patient record, and you can look at them yourself. Beth says, for hospital stays, she always tells people to ask for a completely itemized bill.   [16:12] Holly agrees.   [16:20] Beth says you have to look at the itemized bill. Does something make sense to you? Does it look a little unreasonable? That's easy to see.   [16:26] Ryan says when you call your insurance company, it can be time-consuming to reach the person who can answer your question, but it's important to do so, especially for expensive things like hospital stays. Doctor's office visits can also be expensive.   [16:58] Something else that can be tricky is medications. Especially for those of us with chronic illnesses and the rare diseases that we work with here at APFED, costs can be quite high for some of the medications patients take.   [17:20] Beth says, When you call the insurance company, ask for the name of the person you are talking to. Write down the name, date, and time that you spoke to the person. Ask them for a call reference number, where they are located, and what was discussed so you have record of that information.   [18:04] For medications, you can look up prices through GoodRx or other prescription websites that might give you an estimate of what the possible cost could be.   [18:20] If your provider states on the prescription, Do not substitute or give generics, you might be paying full price. Otherwise, most pharmacies will offer you the generics.   [18:35] Holly asks, If someone feels overwhelmed by billing or insurance issues, where can they go for help? Are there resources that you recommend?   [18:45] Beth says, There is a patient advocate group, with individuals across all 50 states, that will help you with medical bills and advise you on everything else. Your provider's office or the facility also might have someone who could help you.   [19:11] Beth says she would look for patient advocates like social workers. Make sure whoever you work with has medical knowledge.    [19:26] Ryan says, talking with the billing department can feel a little antagonistic, but they are there to help you. If you talk to the right people and ask the right questions, you can figure out what's going on and get some answers.   [19:40] Beth agrees and says, Always write down your questions. Ryan adds, Always write down the answers and ask the name of the person you are talking to. Beth reminds you to ask for the call reference number. They keep a record of every call.   [20:09] Beth's last words about medical billing: "The most important thing is keeping track of what's going on. I recommend using a calendar, like a planner, that you can write 'I saw Dr. J. Smith, EoE Specialist. Discussed flare-ups,' and the time and date."   [20:30] "Keep a record. That way, in this planner, you can go back to it and match it up. If possible, have someone with you or on the phone with you when you talk with them. The other person can take notes, which is very important."   [20:39] "You need to have the backup and the understanding. If you don't understand something, ask questions." Ryan says, Those are good tips for everyone.   [21:14] For our listeners who would like to learn more about eosinophilic disorders, please visit apfed.org.   [21:20] To learn more about navigating healthcare in the United States with eosinophilic disorders, please check out NavigateEOSCare.org. We'll include links to both of those in the show notes below.   [21:29] Ryan thanks Beth Morgan for joining us today. This was an insightful conversation for everyone. Beth thanks Ryan and Holly for having her on.   [21:35] Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode: Beth Morgan, President & CEO of Medical Bill Detectives NavigateEOSCare.org Patient Advocate Foundation   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast Apfed.org apfed.org/specialist apfed.org/connections apfed.org/research/clinical-trials   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   "Medical insurance covers healthcare costs. It protects the patients and caregivers from very high expenses. It can also possibly help with the stress of navigating the healthcare systems." — Beth Morgan   "Most people look at what insurance will cost them per month. They fail to look at what their yearly deductible might be, per person or per family." — Beth Morgan   "Ask the doctor what the CPT code is. That's the code that describes the treatment. Then go to the insurance company's website. Most insurance plans have it. They will give you an estimated cost for that." — Beth Morgan   "Keep a record. That way, in this planner, you can go back to it and match it up. If possible, have someone with you or on the phone with you when you talk with them. The other person can take notes, which is very important." — Beth Morgan   "For hospital stays, I always tell people to ask for a completely itemized bill." — Beth Morgan   "I would look for patient advocates like social workers. Make sure whoever you work with has medical knowledge." — Beth Morgan    Guest Bio: Beth Morgan, President & CEO of Medical Bill Detectives, has been a Certified Professional Coder (CPC) and Compliance Specialist (MCS-P) since 2004. Over the past 20 years, she has worked in several areas of the medical profession, doing billing and coding for all sorts of providers. Her knowledge and expertise have enabled her to not only reduce providers' accounts receivable but also medical bills by 51%. She has access to a broad base of insurance company policy information and is an information contributor to radio and TV shows, as well as magazine articles. Medical Bill Detectives reviews medical bills for errors and overcharges, reducing them to Usual Reasonable and Customary charges, for negotiating discounts on medical bills. We are able to review bills for all 50 states.   Aphadvocates.org/speakers/beth-morgan/ Seakexperts.com/members/7326-beth-morgan 

Think beyond the esophagus. Up to 75% of eosinophilic esophagitis (EoE) patients have ENT-relevant atopic disease that is often best managed with a multidisciplinary approach. Get caught up on best practices in EoE diagnosis and treatment with this episode of the BackTable ENT Podcast, featuring dual board-certified gastroenterologist and allergist-immunologist Dr. John Leung and host Dr. Basil Kahwash. --- SYNPOSIS The discussion covers the definition, symptoms, and diagnosis of EoE, highlighting the role of food and environmental allergies. Dr. Leung and Dr. Kahwash cover diagnostic techniques like endoscopy and emerging non-invasive methods, as well as various treatment options including dietary modifications, pharmacology, and biologics. The doctors also emphasize the importance of multidisciplinary collaboration between gastroenterologists, allergists, and otolaryngologists to provide optimal care for patients with EoE. --- TIMESTAMPS 00:00 - Introduction 03:13 - Understanding Eosinophilic Esophagitis (EoE)05:45 - EoE Symptoms and Diagnosis08:41 - Role of ENT in EoE Diagnosis11:32 - Diagnostic Criteria for EoE16:34 - Treatment Options for EoE20:55 - Role of Allergists and Environmental Allergies23:24 - Pharmacological Management of EoE29:38 - Complications and Risks of EoE36:21 - Follow-Up Endoscopies and Surveillance40:34 - Future Directions in EoE Management45:21 - Conclusion and Final Thoughts --- RESOURCES Dr. John Leunghttps://www.bostonspecialists.org/dr-leung-full-profile

What is PCOS, how does it overlap with IBS, and what can you do about it? Join me and our guest Cory Ruth as we break down all of the above and more! Cory Ruth is a registered dietitian nutritionist and women's health expert who specializes in PCOS and nutrition therapy for infertility and assisted reproductive technology. She is the founder and principal of The Women's Dietitian.   PCOS Is My Power: The first complete guide to thriving with Polycystic Ovary Syndrome (PCOS), offering a science-backed, holistic path to managing symptoms, plus 68 recipes and 6 meal plans.   In this episode, we cover: Meet Cory 3:13 What is PCOS? 4:17 What have you been focused on? 7:01 Why does it take so long to get a diagnosis? 8:59 IBS + PCOS overlap 12:17 Inflammation 14:30 Treating PCOS 20:26  GLP-1s 23:27 How do diet and lifestyle modifications help? 25:15 Biggest myths 30:02 PCOS is my power 32:45  Connect with Cory 36:58    Thank you to our partners:  mBIOTA is the next generation of the elemental diet. Developed with leading gastroenterologists and food scientists, it's the first formula that's both clinically effective and genuinely easy to drink. Pure, easily absorbed nutrients are essential, but the mBIOTA difference is in the details: from their proprietary Amino Taste Modification Technology (ATMT), to their fully vegan and gluten-free ingredients, mBIOTA provides balanced daily nutrition backed by science.  The result is a game-changing medical-grade formula that helps restore GI function in patients with SIBO, IMO, IBS, Crohn's, EoE and more. Learn more at mbiota.com and save 20% off their 2 week protocol with the code GUTIVATE.   FODZYME is the world's first enzyme supplement specialized to target FODMAPs. When sprinkled on or mixed with high-FODMAP meals, FODZYME's novel patent-pending enzyme blend breaks down fructan, GOS and lactose before they can trigger bloating, gas and other digestive issues.  With FODZYME, enjoy garlic, onion, wheat, brussels sprouts, beans, dairy and more — worry free! Discover the power of FODZYME's digestive enzyme blend and eat the foods you love and miss. Visit fodzyme.com and save 20% off your first order with code THEGUTSHOW. One use per customer.   ModifyHealth is the leader in evidence-based, medically-tailored meal delivery offering Monash Certified low FODMAP, Gluten free, and Mediterranean meals - expertly crafted to help you achieve better symptom control AND improve overall health.  The best part? They make it easy by doing all prep work for you. Simply choose the meals you want, stock your fridge or freezer when meals arrive at your door, then heat and enjoy when you're ready. Delicious meals. Less stress. Complete peace of mind. Check out modifyhealth.com and save 35% off your first order plus free shipping across the US with code: THEGUTSHOW.   Connect with Erin Judge, RD:  Instagram TikTok Work with Erin FREE symptom tracker    

Lorwyn is known for haughty elves, sneaky faeries, mighty kithkin... and a very noticeable lack of footwear. We're excited to be back on one of Magic's most iconic planes, and the limited vectors are looking great! Get ready for your prerelease using our format breakdown.Join our free Discord server here: https://discord.gg/P4wQqGdYou can support Tyler and Ben on Patreon here: https://patreon.com/draftchaffpodListen to the podcast https://podcasters.spotify.com/pod/show/draft-chaffFollow us on Bluesky: https://bsky.app/profile/draftchaff.bsky.socialCheck out the Draft Chaff Cube: https://cubecobra.com/cube/overview/draftchaffReach us at: draftchaffpod@gmail.com#magicthegathering #draftchaff #draft #limited #sealed #podcast #EOE #edgeofeternities #mtgeoe #mtglimited #mtgdraftguide

On this episode of Food Allergy Talk, I welcome Tristan Tierce of Allergy Voyage. Tristan is Co-Founder and CEO of Allergy Voyage, graduated from Barrett, the Honors College at Arizona State University in 2024 with a double major in Business Entrepreneurship and Art Studies. He had his first anaphylactic reaction at ten months old, diagnosed with EOE at 4 years old. He has outgrown a vast number of allergies, but is still anaphylactic to Dairy, Pistachios, Cashews, and allergic to red meat, egg, and a couple other things. Tristan is Currently based in Dallas, TX with family.Allergy Voyage is a platform and service, primarily at Arizona State University, that helps people with food allergies find safe dining options by filtering menus, providing ingredient lists, and connecting them with dietitians, reducing the anxiety and risk of eating out. Founded by Tristan during his time at ASU, it aims to bridge the gap between consumers and restaurants, offering transparency and tools for safe, confident dining experiences, especially for those with severe restrictions. Tristan's Bio:  Allergy Voyage Co-Founder and CEO, Tristan Tierce, had his first anaphylactic reaction at ten months old, and was diagnosed with eosinophilic esophagitis at age four. Traveling to different hospitals, speaking at FARE events, and contributing to local support groups, Tristan has always actively engaged with the allergic community and advocated for others with dietary restrictions. Tristan began to encounter travel-based struggles with dining out after moving out of state for university, inspiring the creation of Allergy Voyage!AV's Bio: Allergy Voyage is a digital Concierge service that hosts menus for individuals with dietary restrictions to view, helping them feel safer and confident when dining, simultaneously increasing food service provider revenue. Users can filter menus based on their dietary needs, discovering allergens and present ingredients, save information to their accounts, and grow further connected to food service providers.Allergy Voyage: https://allergyvoyage.com/Socials: @AllergyVoyageJoin My Private Facebook Group to connect, support and share: https://www.facebook.com/groups/FoodAllergyPI/Read My Articles on WebMD: https://blogs.webmd.com/food-allergies/lisa-horneThe Everything Nut Allergy Cookbook: https://www.simonandschuster.com/authors/Lisa-Horne/190009636The Food Allergy Talk Podcast: https://foodallergypi.com/the-food-allergy-talk-podcast/Food Allergy P.I. Blog: https://foodallergypi.comX: @foodallergypi & @fatalkpodcastInstagram: https://www.instagram.com/foodallergypi/ and https://www.instagram.com/foodallergytalk/ TikTok: https://www.tiktok.com/@foodallergypiEmail: foodallergypi@gmail.com

Looking for diet strategies that improve IBS symptoms and are backed by research, not trends?  In this episode, we cover: Can you give me a diet plan? [4:07] Low FODMAP diet [5:13] Long term [8:32] Fiber [12:19] Is all fiber the same? [14:29] How much fiber? [18:02] Is there "bad" food to avoid? [23:17] What are ultra processed foods? [25:44] What should your diet look like? [27:43] Where to start? [34:25]   Thank you to our partners: ModifyHealth is the leader in evidence-based, medically-tailored meal delivery offering Monash Certified low FODMAP, Gluten free, and Mediterranean meals - expertly crafted to help you achieve better symptom control AND improve overall health.  The best part? They make it easy by doing all prep work for you. Simply choose the meals you want, stock your fridge or freezer when meals arrive at your door, then heat and enjoy when you're ready. Delicious meals. Less stress. Complete peace of mind. Check out modifyhealth.com and save 35% off your first order plus free shipping across the US with code: THEGUTSHOW.   mBIOTA is the next generation of the elemental diet. Developed with leading gastroenterologists and food scientists, it's the first formula that's both clinically effective and genuinely easy to drink. Pure, easily absorbed nutrients are essential, but the mBIOTA difference is in the details: from their proprietary Amino Taste Modification Technology (ATMT), to their fully vegan and gluten-free ingredients, mBIOTA provides balanced daily nutrition backed by science.  The result is a game-changing medical-grade formula that helps restore GI function in patients with SIBO, IMO, IBS, Crohn's, EoE and more. Learn more at mbiota.com and save 20% off their 2 week protocol with the code GUTIVATE.   FODZYME is the world's first enzyme supplement specialized to target FODMAPs. When sprinkled on or mixed with high-FODMAP meals, FODZYME's novel patent-pending enzyme blend breaks down fructan, GOS and lactose before they can trigger bloating, gas and other digestive issues.  With FODZYME, enjoy garlic, onion, wheat, brussels sprouts, beans, dairy and more — worry free! Discover the power of FODZYME's digestive enzyme blend and eat the foods you love and miss. Visit fodzyme.com and save 20% off your first order with code THEGUTSHOW. One use per customer.

This is the 71st episode in my drug pronunciation series. In this episode, I divide Dupixent and dupilumab into syllables, tell you which syllables to emphasize, and share my sources. The written pronunciations are below and in the show notes on https://www.thepharmacistsvoice.com.   EoE is mentioned in this episode. To learn more about eosinophilic esophagitis, watch the following YouTube video: https://bit.ly/4pplm8w    Note: we don't cover pharmacology in this series. Just pronunciations.   We're changing to a new format in February 2026! Click to sign up for The Pharmacist's Voice® monthly email newsletter to get notified about each new (MONTHLY) episode. https://bit.ly/3AHJIaF    Dupixent = DU-pix-ent DU, like dual pix, like pixel ent, like [part of] the last syllable of the word, president  Emphasize DU Written Pronunciation Source: Dupixent's Patient information on the Regeneron's Website https://www.regeneron.com/downloads/dupixent_ppi.pdf (accessed 1-5-26) Spoken Pronunciation Example: Dupixent injection demonstration video - first 20 sec on dupixent.com (accessed 1-5-26) and Dupixent's YouTube channel https://www.youtube.com/@DUPIXENT (accessed 1-5-26)   dupilumab = doo-PIL-ue-mab Du, like dual PIL, like pillow ue, like the letter in the alphabet, "U' mab, which is the stem for monoclonal antibodies  Emphasize PIL Written pronunciation source: USP Dictionary Online and MedlinePlus.gov   Spoken Pronunciation Examples: Podcast episodes on Dupixent's YouTube channel (in the first 20 sec) and Dupixent injection demonstration video - in the first 20 sec on dupixent.com.   If you know someone who would like to learn how to say Dupixent and dupilumab, please share this episode with them. Subscribe for all future episodes. This podcast is on all major podcast players and YouTube. Popular links are below. ⬇️   Apple Podcasts   https://apple.co/42yqXOG  Spotify  https://spoti.fi/3qAk3uY  Amazon/Audible  https://adbl.co/43tM45P YouTube https://bit.ly/43Rnrjt   Host Background: Kim Newlove has been an Ohio pharmacist since 2001 (BS Pharm, Chem Minor). Her experience includes hospital, retail, compounding, and behavioral health. She is also an author, voice actor (medical narrator and audiobook narrator), podcast host, and consultant (audio production and podcasting).    Other episodes in this series The Pharmacist's Voice Podcast Episode 362, Pronunciation Series Episode 70 (Corlanor) The Pharmacist's Voice Podcast Episode 360, Pronunciation Series Episode 69 (Kisunla) The Pharmacist's Voice Podcast Episode 358, Pronunciation Series Episode 68 (Journavx) The Pharmacist's Voice Podcast Episode 356, Pronunciation Series Episode 67 (Zanaflex) The Pharmacist's Voice Podcast Episode 352, Pronunciation Series Episode 66 (Yescarta) The Pharmacist's Voice Podcast Episode 350, Pronunciation Series Episode 65 (Xarelto) The Pharmacist's Voice Podcast Episode 349, Pronunciation Series Episode 64 (acetaminophen) The Pharmacist's Voice Podcast Episode 348, Pronunciation Series Episode 63 (Welchol/colesevelam) The Pharmacist's Voice Podcast Episode 346, Pronunciation Series Episode 62 (valacyclovir) The Pharmacist's Voice Podcast Episode 343, Pronunciation Series Episode 61 (ubrogepant) The Pharmacist's Voice Podcast Episode 341, Pronunciation Series Episode 60 (topiramate) The Pharmacist's Voice Podcast Episode 339, Pronunciation Series Episode 59 (Suboxone) The Pharmacist's Voice Podcast Episode 337, Pronunciation Series Episode 58 (rosuvastatin)  The Pharmacist's Voice Podcast Episode 335, Pronunciation Series Episode 57 (QVAR) The Pharmacist's Voice Podcast Episode 333, Pronunciation Series Episode 56 (pantoprazole)  The Pharmacist's Voice Podcast Episode 330, Pronunciation Series Episode 55 (oxcarbazepine) The Pharmacist's Voice Podcast Episode 328, Pronunciation Series Episode 54 (nalmefene) The Pharmacist's Voice Podcast Episode 326, Pronunciation Series Episode 53 (Myrbetriq) The Pharmacist's Voice Podcast Episode 324, Pronunciation Series Episode 52 (liraglutide)  The Pharmacist's Voice Podcast Episode 322, Pronunciation Series Episode 51 (ketamine) The Pharmacist's Voice Podcast Episode 320, Pronunciation Series Episode 50 (Jantoven) The Pharmacist's Voice Podcast Episode 318, Pronunciation Series Episode 49 (ipratropium) The Pharmacist's Voice Podcast Episode 316, Pronunciation Series Episode 48 (hyoscyamine) The Pharmacist's Voice Podcast Episode 313, Pronunciation Series Episode 47 (guaifenesin) The Pharmacist's Voice Podcast Episode 311, Pronunciation Series Episode 46 (fluticasone) The Pharmacist's Voice Podcast Episode 309, Pronunciation Series Episode 45 (empagliflozin) The Pharmacist's Voice Podcast Episode 307, Pronunciation Series Episode 44 (dapagliflozin) The Pharmacist's Voice Podcast Episode 304, Pronunciation Series Episode 43 (cetirizine)  The Pharmacist's Voice Podcast Episode 302, Pronunciation Series Episode 42 (buspirone)  The Pharmacist's Voice Podcast Episode 301, Pronunciation Series Episode 41 (azithromycin) The Pharmacist's Voice Podcast Episode 298, Pronunciation Series Episode 40 (umeclidinium) The Pharmacist's Voice Podcast Episode 296, Pronunciation Series Episode 39 (Januvia)  The Pharmacist's Voice Podcast Episode 294, Pronunciation Series Episode 38 (Yasmin) The Pharmacist's Voice Podcast Episode 292, Pronunciation Series Episode 37 (Xanax, alprazolam) The Pharmacist's Voice Podcast Episode 290, Pronunciation Series Episode 36 (quetiapine)  The Pharmacist's Voice Podcast Episode 287, pronunciation series ep 35 (bupropion) The Pharmacist's Voice Podcast Episode 285, pronunciation series ep 34 (fentanyl) The Pharmacist's Voice Podcast Ep 281, Pronunciation Series Ep 33 levothyroxine (Synthroid) The Pharmacist's Voice ® Podcast Ep 278, Pronunciation Series Ep 32 ondansetron (Zofran) The Pharmacist's Voice ® Podcast Episode 276, pronunciation series episode 31 (tocilizumab-aazg) The Pharmacist's Voice ® Podcast Episode 274, pronunciation series episode 30 (citalopram and escitalopram) The Pharmacist's Voice ® Podcast Episode 272, pronunciation series episode 29 (losartan) The Pharmacist's Voice Podcast Episode 269, pronunciation series episode 28 (tirzepatide) The Pharmacist's Voice Podcast Episode 267, pronunciation series episode 27 (atorvastatin)  The Pharmacist's Voice Podcast Episode 265, pronunciation series episode 26 (omeprazole) The Pharmacist's Voice Podcast Episode 263, pronunciation series episode 25 (PDE-5 inhibitors) The Pharmacist's Voice Podcast Episode 259, pronunciation series episode 24 (ketorolac) The Pharmacist's Voice ® Podcast episode 254, pronunciation series episode 23 (Paxlovid) The Pharmacist's Voice ® Podcast episode 250, pronunciation series episode 22 (metformin/Glucophage) The Pharmacist's Voice Podcast ® episode 245, pronunciation series episode 21 (naltrexone/Vivitrol) The Pharmacist's Voice ® Podcast episode 240, pronunciation series episode 20 (levalbuterol) The Pharmacist's Voice ® Podcast episode 236, pronunciation series episode 19 (phentermine)  The Pharmacist's Voice ® Podcast episode 228, pronunciation series episode 18 (ezetimibe) The Pharmacist's Voice ® Podcast episode 219, pronunciation series episode 17 (semaglutide) The Pharmacist's Voice ® Podcast episode 215, pronunciation series episode 16 (mifepristone and misoprostol) The Pharmacist's Voice ® Podcast episode 211, pronunciation series episode 15 (Humira®) The Pharmacist's Voice ® Podcast episode 202, pronunciation series episode 14 (SMZ-TMP) The Pharmacist's Voice ® Podcast episode 198, pronunciation series episode 13 (carisoprodol) The Pharmacist's Voice ® Podcast episode 194, pronunciation series episode 12 (tianeptine) The Pharmacist's Voice ® Podcast episode 188, pronunciation series episode 11 (insulin icodec)  The Pharmacist's Voice ® Podcast episode 184, pronunciation series episode 10 (phenytoin and isotretinoin) The Pharmacist's Voice ® Podcast episode 180, pronunciation series episode 9 Apretude® (cabotegravir) The Pharmacist's Voice ® Podcast episode 177, pronunciation series episode 8 (metoprolol)  The Pharmacist's Voice ® Podcast episode 164, pronunciation series episode 7 (levetiracetam) The Pharmacist's Voice ® Podcast episode 159, pronunciation series episode 6 (talimogene laherparepvec or T-VEC)  The Pharmacist's Voice ® Podcast episode 155, pronunciation series episode 5 Trulicity® (dulaglutide)  The Pharmacist's Voice ® Podcast episode 148, pronunciation series episode 4 Besponsa® (inotuzumab ozogamicin) The Pharmacist's Voice ® Podcast episode 142, pronunciation series episode 3 Zolmitriptan and Zokinvy The Pharmacist's Voice ® Podcast episode 138, pronunciation series episode 2 Molnupiravir and Taltz The Pharmacist's Voice ® Podcast episode 134, pronunciation series episode 1 Eszopiclone and Qulipta   Kim's websites and social media links: ✅ Guest Application Form (The Pharmacist's Voice Podcast) https://bit.ly/41iGogX ✅ Monthly email newsletter sign-up link https://bit.ly/3AHJIaF  ✅ LinkedIn Newsletter link https://bit.ly/40VmV5B ✅ Business website https://www.thepharmacistsvoice.com ✅ Get my FREE eBook and audiobook about podcasting ✅ The Pharmacist's Voice ® Podcast https://www.thepharmacistsvoice.com/podcast ✅ Drug pronunciation course https://www.kimnewlove.com  ✅ Podcasting course https://www.kimnewlove.com/podcasting  ✅ LinkedIn https://www.linkedin.com/in/kimnewlove ✅ Facebook https://www.facebook.com/kim.newlove.96 ✅ Twitter https://twitter.com/KimNewloveVO ✅ Instagram https://www.instagram.com/kimnewlovevo/ ✅ YouTube https://www.youtube.com/channel/UCA3UyhNBi9CCqIMP8t1wRZQ ✅ ACX (Audiobook Narrator Profile) https://www.acx.com/narrator?p=A10FSORRTANJ4Z ✅ Start a podcast with my coach, Dave Jackson from The School of Podcasting! *New 12-4-25* Click my affiliate link: https://community.schoolofpodcasting.com/invitation?code=G43D3G    Thank you for listening to episode 364 of The Pharmacist's Voice ® Podcast.  If you know someone who would like this episode, please share it with them!

The New Year often pushes extreme gut health goals...but many resolutions actually make symptoms worse.    In this episode of The Gut Show, we break down common January mistakes, why drastic changes can backfire, and how to set realistic, supportive goals instead - especially if you have IBS.    What to expect this season + coming soon [3:12] New year messaging [4:28] If you're tempted, try this [6:35] Extreme changes all at once  [8:41] Increasing fiber [11:11] Fasting/calories [13:25] Inflammation, MCAS, Endometriosis [16:13] Taking advice from those without experience with your condition [17:36] How to choose goals for the new year [24:55] Map out the steps to reach those goals [27:34] Stress load [28:56] Make room to check in and adjust [32:05] For IBS specifically [35:08] How to achieve the best diet for IBS [37:42]   Mentioned in this episode: FREE IBS Warrior Summit MASTER Method Membership Take the quiz: What's your poop personality?   Thank you to our partners: FODZYME is the world's first enzyme supplement specialized to target FODMAPs. When sprinkled on or mixed with high-FODMAP meals, FODZYME's novel patent-pending enzyme blend breaks down fructan, GOS and lactose before they can trigger bloating, gas and other digestive issues.  With FODZYME, enjoy garlic, onion, wheat, Brussels sprouts, beans, dairy and more — worry free! Discover the power of FODZYME's digestive enzyme blend and eat the foods you love and miss. Visit fodzyme.com and save 20% off your first order with code THEGUTSHOW. One use per customer.   ModifyHealth is the leader in evidence-based, medically-tailored meal delivery offering Monash Certified low FODMAP, Gluten free, and Mediterranean meals - expertly crafted to help you achieve better symptom control AND improve overall health.  The best part? They make it easy by doing all prep work for you. Simply choose the meals you want, stock your fridge or freezer when meals arrive at your door, then heat and enjoy when you're ready. Delicious meals. Less stress. Complete peace of mind. Check out modifyhealth.com and save 35% off your first order plus free shipping across the US with code: THEGUTSHOW.   mBIOTA is the next generation of the elemental diet. Developed with leading gastroenterologists and food scientists, it's the first formula that's both clinically effective and genuinely easy to drink. Pure, easily absorbed nutrients are essential, but the mBIOTA difference is in the details: from their proprietary Amino Taste Modification Technology (ATMT), to their fully vegan and gluten-free ingredients, mBIOTA provides balanced daily nutrition backed by science.  The result is a game-changing medical-grade formula that helps restore GI function in patients with SIBO, IMO, IBS, Crohn's, EoE and more. Learn more at mbiota.com and save 20% off their 2 week protocol with the code GUTIVATE.   Connect with Erin Judge, RD:  Instagram TikTok Work with Erin FREE symptom tracker

Episode 41 - Meghan McNeil - ​​Updates in Diet Therapy for Eosinophilic Esophagitis: From Elimination to Reintroduction In this episode of Nutrition Pearls: the Podcast, co-hosts Megan Murphy and Nikki Misner talk with Meghan McNeil about the latest updates in EOE management. Meghan is a Registered Dietitian at Cincinnati Children's Hospital Medical Center. The first ten years of her career she worked in nutrition research studies that were  funded by the National Institute of Health. She was a part of a variety of studies looking at bone density, type 1 diabetes, and non-alcoholic liver disease. She currently works as a clinician dietitian, specializing in the nutrition management of patients with Eosinophilic Esophagitis. Meghan loves working with this patient population as she focuses on creating practical approaches to allowing patients to get the nutrients they need while also balancing allowing them to enjoy foods that are safe for them to eat given their diet restrictions.Nutrition Pearls is supported by an educational grant from Mead Johnson Nutrition.Resources:https://pubmed.ncbi.nlm.nih.gov/28283156/https://pubmed.ncbi.nlm.nih.gov/36863390/https://godairyfree.org/Produced by: Corey IrwinNASPGHAN - Council for Pediatric Nutrition Professionalscpnp@naspghan.org

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Fei Li Kuang, MD, PhD, an allergist and immunologist, at Northwestern Medicine, about receiving two APFED HOPE on the Horizon Grants. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:14] Holly introduces today's topic, two APFED HOPE on the Horizon Pilot Grant Projects and today's guest, Fei Li Kuang, MD, PhD, an Assistant Professor in the Division of Allergy and Immunology at Northwestern University Feinberg School of Medicine in Chicago, Illinois.   [1:42] Dr. Kuang is a physician-scientist who takes care of patients with eosinophilic disorders and also performs laboratory research on these disorders in her lab, often using patient samples. Holly thanks Dr. Kuang for joining us.   [2:05] As a child, Dr. Kuang always wanted to be a scientist. She is so grateful to live out her childhood dream, and it's because of the amazing people who have supported her, most importantly, her parents.   [2:29] In graduate school, Dr. Kuang studied B cells. When she went on to do an allergy fellowship, she thought she would study B cells and care for patients with B cell problems. Instead, she fell in love with allergy and eosinophilic disorders.   [2:50] Dr. Kuang is here, in part, because of the different mentors she has had, and in large part, because of the patients she has met along the way.   [3:20] Dr. Kuang had the opportunity to work with Amy Klion at the NIH in a clinical trial to treat patients with a drug that gets rid of eosinophils. She says it was a dream come true after her training.   [4:02] She says she learned so much about eosinophils, their unusual biology, and the mystery behind what they are here for. She got hooked.   [4:15] Dr. Kuang thinks the patients you meet in a clinical trial in a special place like NIH occupy a space in your heart that makes you want to keep working on the subject area.   [4:34] Patients in a clinical trial have given up a bunch of their time to travel to Bethesda, Maryland. For the trial Dr. Kuang participated in as a Fellow, it was a good year of their time to come out and do it.   [4:47] Dr. Kuang felt there were so many interesting questions, from an intellectual point of view, but there was also a real need from patients with chronic conditions. It was a beautiful opportunity to marry scientists with physicians in training.   [5:36] Dr. Kuang shares some knowledge about eosinophils. They are white blood cells that are in all of us. They have little pink packages or granules that "jumped out" in the light microscope almost 200 years ago, when we first identified them.   [6:00] Dr. Kuang says that animals, dating back to reptiles, and different species of dolphins, all have eosinophils. A veterinary scientist, Dr. Nicole Stacy of the University of Florida, has taken photos of eosinophils from all these different species.   [6:21] They've been around for a long time. What are they good for? What we know is that they are associated with disease conditions, such as asthma and others, including leukemia. Those were the classic first studies of eosinophils.   [6:42] Now, we have a different mindset about eosinophils from work by the late James Lee at Mayo Clinic, Arizona.   [6:58] Dr. Kuang credits Dr. Lee with suggesting that eosinophils not just cause us problems but also help treat parasitic infections, maintain tissue homeostasis, help wound healing, and tissue repair. That's a new area we are beginning to appreciate.   [7:41] Dr. Kuang says we need to be open-minded that in some circumstances, eosinophils may be helpful or innocent. Now we have tools to start to understand some of that. We need to collect information from patients being treated with medicines.   [8:10] Ryan tells of being diagnosed as a kid. Doctors explained to him that eosinophils fight parasites, but in some people, they get confused and attack the esophagus. That's EoE. That was easy to understand, but he knew that the researchers knew more.   [8:53] Ryan is grateful to the patient population around eosinophilic esophagitis, and is proud of APFED's support of patients and caregivers with HOPE Grants. APFED has the HOPE on the Horizon Research Program, entirely funded by community donations.   [9:13] To date, APFED has directed more than $2 million toward eosinophilic disease research initiatives through various grant programs. As a patient advocacy organization, APFED works with fantastic researchers who submit innovative research ideas.   [9:32] These research ideas go through an extensive and competitive peer-review process, supported by researchers and clinicians in the APFED community.   [9:42] Today, we're going to discuss two different projects supported by HOPE Pilot Grants with Dr. Kuang.   [10:00] Dr. Kuang thinks there are two ways these grant programs are important to patients. One is advancing research by nurturing seedling investigators. Dr. Kuang got her first grant when she was a Fellow. It was an incredible opportunity.   [10:25] These grant programs also nurture seedling ideas that don't have enough evidence yet to garner the larger NIH grants, and so forth. There are other sources for grants: pharmaceutical companies. The grant programs are for seeds.   [10:49] Patients need to know that there are new things that are given some chance of being tested out. Research takes some time, and the FDA process of getting a drug approved is long.   [11:04] For the newly diagnosed patient, it can feel overwhelming. It feels like there's a loss of control. Sometimes, participating in something like APFED, being part of a community, gives back a sense of control that is lost when you're handed a diagnosis.   [11:45] For patients who have had it for a long time, when they participate in research and become engaged in organizations like APFED, they know they may not directly benefit today, they may benefit later, but they hope future patients will benefit.   [12:21] That gives them a sense of control and hope that things will be better for the next generation. We all want that, especially in medicine, in something that we don't have a very deep understanding of.   [12:58] Dr. Kuang received two HOPE Pilot Grants, one in 2018 and one in 2022. The first grant was awarded when she was a Fellow at the NIH.   [13:05] That first grant explored some effects of eosinophilic depletion of pathogenic lymphocytes in hypereosinophilic syndrome and overlaps with EGIDs. Ryan asks for a broad overview of that research.   [13:25] When Dr. Kuang was a Fellow at the NIH, they were doing a Phase 2 clinical trial, looking at "blowing up" eosinophils in patients who have a lot of them, hypereosinophilic syndrome patients.   [13:39] They included patients who had eosinophilic GI disease, often beyond the esophagus. They may have esophageal involvement, but sometimes their stomach is impacted, sometimes their large bowel is impacted, with related symptoms.   [13:57] What Dr. Kuang and the team noticed in the trial was that just within that little group of patients, there were people who did well, and people who did much better than before, but would have recurrent symptoms, and with no eosinophils in their GI tissues.    [14:16] The researchers wanted to know what was causing these problems for the patient. If you take eosinophils away, what other factors will impact the immune system of the patient, semi-long-term?   [14:32] Their focus was on these groups of patients who had different responses. They looked at the white blood cells that had been previously described as being the responsible, "bad" T cells that lead to eosinophils in the gut.   [14:49] They found that the patients who had recurrent flares of the disease had more of the bad T cells, and the patients who responded well and never complained again about symptoms did not.   [15:03] That allowed researchers to identify that there were subsets of patients with the disease that they were calling the same thing.   [15:18] Dr. Kuang says that work also led them to find that those cells were being reported in patients who had food allergies for which they needed an epinephrine auto-injector.   [15:27] The researchers were curious whether that was just a food allergy issue, or only applied if you had food allergies and eosinophilic GI disease. That HOPE project allowed them to do a pilot study to look at food allergy patients, too. They did, and published it.   [15:45] They published that in patients who have a food allergy and have these T cells, the insides of those cells make different messages for the immune system than the ones that the researchers had previously described.   [16:01] In looking for why there were differences in those responses, they accidentally found that there were differences inside these cells in a completely different disease, which also had these T cells.   [16:21] Dr. Kuang says that the finding was kind of a surprise. If they had found anything in the eosinophilic GI disease patients, that would have been good. They also looked at the epithelial cells and the structure of the GI lining.   [16:42] Even though there were no eosinophils in the GI lining in the patients who had been treated with a biologic that depleted eosinophils, their GI lining still looked like the GI lining of patients who had eosinophilic GI disease.   [16:55] Dr. Kuang asked what was creating those spots. Our gut lining sheds, so there should have been an opportunity for the GI lining to turn over and look new. Something was there, making signals to create these spots. They did a different publication on that.   [17:21] The data from the HOPE Pilot study allowed Dr. Kuang to apply for larger grants. It allowed her to propose to the company that made this drug, when they did the Phase 3 trial, to insert into that special study the study on eosinophilic GI disease.   [17:48] Do patients with eosinophilic GI disease do better or worse on this drug, and how do the T cells look in that trial? That HOPE Grant gave Dr. Kuang the data to ask the drug company to give her money to study it in an international cohort of patients.   [18:17] There were only 20 patients in that first NIH trial, who gave a year of their life, coming to NIH all the time. They continued to be in the study until the drug was approved for asthma.   [18:28] Dr. Kuang says the main reason the company did the Phase 3 trial, which is expensive, and the market share is not huge because it's a rare disease, is that two of the patients went to bat for this disease population.   [18:47] The two patients went and showed the business people what they looked like before, what the drug had done for them, and how their lives had changed. It wasn't the doctors or the great paper from the trial, but the patients who convinced the company.   [19:01] Dr. Kuang says she was so floored by that and moved by what they did for the community. She is grateful.   [19:24] Since the Phase 3 trial, Dr. Kuang and the other researchers realized they had not fully studied the eosinophils. They had studied them in part. They found differences in response. This inspired the second APFED HOPE Pilot Grant.   [21:19] In 2022, Dr. Kuang received a two-year APFED HOPE Pilot Grant to examine how blood eosinophils in Eosinophilic Gastrointestinal Diseases differ from those of other eosinophilic diseases and how T cells in EGIDs differ from those in food allergies.   [21:49] Dr. Kuang says normally, the biggest place of residence for eosinophils is the GI tract. That's where they are normally seen in people who do not have eosinophilic disorders.   [21:59] People who have eosinophilic disorders that attack other parts of the body, asthma, and rarely, the heart. Dr. Kuang was curious to know why one person and not the other?   [22:15] Patients who have eosinophilic GI disease often ask, How do you know this high level in the blood is not going to attack my heart or my lungs in the future? Dr. Kuang does not know.   [22:29] Dr. Kuang says, looking at the cohort at the NIH, that for many patients who have both GI organ involvement and some other space, when they first went to see a provider, their first complaint was a GI condition.   [22:54] If the doctor had only diagnosed a GI condition, nothing else, that would have been wrong. Those patients may not have been monitored as well. A third of the patients originally presented like that.   [23:11] What that meant was that we should be paying attention to patients who have GI disease who have lots of eosinophils in their blood. Moving forward, if there are new complaints, we need to investigate. We can't forget they have that.   [23:27] Dr. Kuang asks, Wouldn't it be great if we had a better tool than needing to wait? Wouldn't it be great if we had a biomarker that said the eosinophils have switched their target location and are going somewhere else?   [23:41] One way to do that is to take different groups of eosinophils and look for differences between those that never target the GI tract and those that do. In patients who have EoE, the eosinophils only target or cause problems in the esophagus.   [23:58] Are their eosinophils any different than those of a healthy person, with none of these conditions? That was the goal of that study.   [24:10] T cells are another type of white blood cell. They contain a memory of foreign things they have encountered, which allows them to glom onto flu, COVID, peanuts, pollen, that kind of thing. They remember.   [24:32] Dr. Kuang says they learned that T cells, at least in the mouse model, are required in the development of eosinophilic esophagitis. The mice in the old study, where mice were forced to develop EoE, did not get EoE if you removed their T cells.   [24:50] In the first APFED HOPE grant study, Dr. Kuang found T cells in the blood and tissue of both EGIDs and food allergy patients, but the insides of the T cells were different. The food allergy patients were children recruited by a pediatric allergist.   [25:19] In the second APFED HOPE grant study, at Northwestern, Dr. Kuang recruited her adult food allergy patients. That was a way to validate what they found in the first study and move further to better characterize those T cells in the two different diseases.   [25:47] Dr. Kuang says we're at a point where we've recruited a lot of people. She says it's amazing what people are willing to do. It's very humbling.   [26:06] Dr. Kuang's team in the lab is really great, too. To accommodate patients, they would see them after work, if that's what they had to do to isolate eosinophils. So they did that, and now they are in the process of analyzing that data. It's really exciting.   [26:28] What's exciting is that they are seeing results that show that eosinophilic GI disease patients have circulating eosinophils that are different from the eosinophils of people who don't have GI involvement, and from people who have EoE.   [26:46] The EoE patients have eosinophils different from those of healthy donors. Dr. Kuang says there's a lot of promise for perhaps unique signatures that could help define these conditions; maybe someday without biopsying, but that's a long time away.   [27:16] Dr. Kuang says they will focus on some candidate targets and try to recreate some of that in a dish with eosinophils from healthy people.   [27:26] What are the signals that lead eosinophils to do this, and can we translate that back to available drugs that target certain cytokines or other pathways, and maybe give some insight to develop drugs that target other pathways for these diseases?   [28:17] Ryan thinks it's exciting that this research is narrowing in on not only the different symptoms, but also how the eosinophils are acting differently in these populations.    [28:44] Dr. Kuang is super excited about this research. You could imagine that all eosinophils are the same, but you don't know until you look. When they looked, using the newest technology, they found there were differences.   [29:33] Dr. Kuang says it is thought that T cells respond to triggers. We don't think eosinophils have a memory for antigens. T cells do. That's one of their definitions. When T cells react to a trigger, they give out messages through cytokines or by delivery.   [30:20] Those are the messages that recruit eosinophils and other cells to come and stir up some trouble.   [30:28] In the mouse model, where you don't have the T cells, and you don't get eosinophilic esophagitis in the particular way they made it happen in a mouse, that middle messenger is gone, so the eosinophils don't know where to go.   [30:44] With drugs that take out eosinophils, you think that you've gotten rid of the cell that creates all the problems. It shouldn't matter what the message says because there's no cell there to cause the damage.   [30:58] What Dr. Kuang learned is that, at least in certain eosinophilic GI diseases, that's not true. You erase the eosinophils from the picture, but that message is still coming.   [31:10] Who's carrying out the orders? Or is that message maintaining the wall of epithelial cells in a certain way that we didn't appreciate because the eosinophils were also there?   [31:24] It's important to study both, because one is the messenger and the other is one of the actors. Whether all of the actions taken by eosinophils are bad, or maybe some of them were meant to be good, we have yet to learn.   [31:40] At the moment, we're using it as a marker for disease activity, and that may change in the future, as we learn more about the roles of these cells in the process.   [31:50] We have drugs now that target eosinophils and drugs that target T cells. Dr. Kuang thinks it's important to study both and to study the impact of these drugs on these cells.   [32:02] You could theoretically use these drugs to understand whether, if someone responds to it, what happens to these cells, and if someone doesn't respond to it, what happens to these cells, and how this disease manifests in this flavor of patients.   [32:54] Dr. Kuang says, Often in science, we take a model. We think this works this way. Then, if this works this way, we expect that if we remove this, these things should happen. We did that with the first clinical trial, with NIH patients.   [33:10] It didn't quite happen the way we thought, so we had to go looking for explanations. These were unusual setbacks. Sometimes you have unusual findings, like the food allergy part.   [33:24] When Dr. Kuang went to Northwestern, she saw different cohorts of patients than she saw at NIH. She saw people who were seen every day, which is a different spectrum than those who are selected to be enrolled in a study protocol at the NIH.   [33:42] That broadened her viewpoint. It's maybe not all food-triggered. They were seeing adults who'd never had food allergies or asthma their whole life, and they had eosinophilic esophagitis suddenly as a 50-year-old. There's a significant group of them.   [34:10] What Dr. Kuang learned and tries to be open-minded about is that where you train, what sorts of patients you see, really shape your viewpoint and thinking about the disease process and the management process.   [34:24] Dr. Kuang says she was so lucky to have experienced that at a quaternary care referral center like the NIH and at an academic center like Northwestern, where there are fantastic gastroenterologists who see so many of these patients.   [34:56] Dr. Kuang and an Allergy Fellow knew they were going to get a wonderful data set from the NIH patients they had recruited, so they thought they had better look deeply at what had been learned before with older technology, with mice and people.   [35:13] They decided to gather previous research, and that ultimately got published as an article. From that research, they learned that people did things in many different ways because there was no standard. They didn't know what the standard should be.   [35:28] Different things you do to try to get eosinophils out of tissue impact how they look, in terms of transcript, gene expression, and what messages they make to define themselves as an eosinophil.   [35:43] They also learned that because eosinophils are hard to work with, they die easily, and you can't freeze them and work on them the next day; you can introduce issues in there that have to be accounted for.   [35:59] They learned that as an eosinophil research community, they ought to come up with some standards so that they can compare future studies with each other. Dr. Kuang says it was impossible to compare the old studies that used different premises.   [36:50] Dr. Kuang says we need to be proactive in creating the datasets in a standard way so that we can compare and have a more fruitful and diverse community of data. It's hard to use the old data.   [37:57] Dr. Kuang says they get fresh blood from patients, and because eosinophils are finicky, they need to be analyzed within four hours, or preserved in a way to save whatever fragile molecules are to be studied.   [38:19] If you let it sit, it starts dying, so you won't have as many of them, and they start changing because they're not in the body. Dr. Kuang experimented with putting a tube of blood on the bench and checking it with the same test every two hours. It changes.   [38:38] Four hours is a standard to prevent the eosinophils from dying. Patients need treatment. If a patient is hospitalized and needs treatment, Dr. Kuang's team needs to be there to get a sample before treatment is started.   [39:03] The treatment impacts it, changing the situation. Much of the treatment, initially, is steroids. When you give lots of steroids, the eosinophils go away. It's no good to draw their blood then.   [39:27] Dr. Kuang also gets a urine sample. The granules of the eosinophils can get into the urine. As they study people with active disease, they want to capture granule proteins in the urine as a less invasive way to monitor activity in different disease states.   [40:04] The patient just needs to give Dr. Kuang either arm and a urine sample.   [41:04] Dr. Kuang explains, you can count your eosinophils after four hours, but to study them, they have different flags of different colors and shapes. Those colors and shapes may mean that it's an activated eosinophil, or they may have other meanings.   [41:41] Dr. Kuang focused on markers that look at whether it's going to spill its granules and some traditional markers of activation.     [41:50] Everyone chooses a different marker of activation. So they decided to look at as many as they could. One marker is not sufficient. They seem to be different in different conditions. The markers are on the surface; you need to analyze them right away.   [42:20] Then, Dr. Kuang breaks open the eosinophils and grabs the messenger RNA. They preserve it to do sequencing to read out the orders to see what this eosinophil is telling itself to make. RNA chops up messages.   [43:00] When you open an eosinophil, a protein you find is RNA, which chops up messages, destroying parts of the cell. You want to save the message. There's a brief time to analyze the eosinophil. Dr. Kuang works to preserve and read the message.   [44:04] Dr. Kuang hopes someday to run a tube of blood, look at the flags on the eosinophils, and say, "I think your eosinophilic GI disease is active," or "You have a kind of eosinophilic GI disease we need to monitor more frequently for organ damage."   [44:38] If another patient doesn't have those flags, Dr. Kuang could say, "I think the chances that you're going to have involvement elsewhere are low." That can give reassurance to folks who are worried.   [45:15] Dr. Kuang hopes that someday we can understand better why some people have food allergies vs. eosinophilic GI disease. They both have T cells, but the T cells have different packages inside with messages to deliver.   [45:34] Every day, Dr. Kuang has to tell patients she doesn't have that answer. Someday, she hopes she can tell a patient she does have that answer.   [46:35] Dr. Kuang tells about an NIH grant she's excited about and the patients she recruits after therapy, or elimination diets, to examine eosinophils and T cells, to see the impacts their treatments or diets have had on eosinophilic GI disease.   [47:18] Dr. Kuang believes there will be predictors of who will respond to an elimination diet and who will respond to steroid therapy. She hopes one day to have that, rather than going through rounds of six to eight weeks followed by a scope.   [47:34] If you have an elimination diet for six to eight weeks, every time you add back a food, you have to do a scope. Dr. Kuang says it would be great if you could be more precise ahead of time for therapy.   [47:48] Dr. Kuang says these wonderful drugs selectively take out parts of the pathway in the immune system. They provide real-life opportunities to ask, why is this important in human biology and the human immune system?   [48:15] Dr. Kuang finds the knowledge itself fascinating and useful. She hopes it informs how we choose future drugs or therapeutic avenues to get the best we can out of what we've learned, so we have more targeted ways of treating specific diseases.   [48:48] Ryan is grateful for all the research happening for the eosinophilic disease community and all the patients participating in the research. He asks Dr. Kuang how a patient can participate in research.   [49:12] There are lots of ways to be involved in research. Dr. Kuang says her patients come away from participating in research feeling good about having done it.   [49:22] Answer a survey, if that's what you have bandwidth for. Where therapies are changing, being a part of a community is good for the community, for the future, but it's good for you, too. It's healing in ways that are not steroids or biologics.   [49:58] Being part of a community is healing in ways we all need when we feel alone and bewildered. You're not alone.   [50:12] There are many ways to participate: APFED, CEGIR, individual institutions, and clinical trials. They all have different amounts of involvement. It's worthwhile to participate, not only for future patients but for yourself. They're fantastic!   [50:56] Dr. Kuang talks about the privilege as a physician of working with APFED and other organizations to do this work.   [51:09] Holly thanks Dr. Kuang for sharing all of this research and exciting information.   [51:25] Dr. Kuang is excited about what her group is doing and is hopeful. Besides showing up for this disease, we have to show up for research, in general, in this country. It's a dark time for NIH research funding.   [51:55] Dr. Kuang asks the young listeners who are thinking of choosing a field to see the potential and get into it, study this, and believe that there's going to be a future with a more nurturing research environment.   [52:36] Dr. Kuang would hate to lose generations of scientists. She says that once she was a little girl who was trying to be a scientist. Her parents had no connections with scientists or doctors, but she was able to get into research, and she thinks you can, too.   [53:48] As a graduate student, Ryan has always been interested in trying to improve things, and he sees hope on the horizon. He's very grateful to the APFED community for supporting these research HOPE Pilot Grants.   [54:17] Ryan is very grateful to Dr. Kuang for joining us today.   [54:22] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes.   [54:28] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at apfed.org/specialist.   [54:37] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.   [54:57] Dr. Kuang thanks Ryan and Holly and says she enjoyed the conversation. Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode: Fei Li Kuang, MD, PhD, Allergist and Immunologist, Northwestern Medicine   Grants and publications discussed: Apfed.org/blog/apfed-announces-2018-hope-apfed-hope-pilot-grant-recipient/ Apfed.org/blog/fei-li-kuang-hope-pilot-grant-award/  Pubmed.ncbi.nlm.nih.gov/39213186/ Pubmed.ncbi.nlm.nih.gov/37487654/   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections apfed.org/research/clinical-trials   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   "I think the patients that you meet in a clinical trial, especially in a special place like NIH, occupy a space in your heart — I don't mean to be all too emotional about this — that makes you want to keep working on the subject area." — Fei Li Kuang, MD, PhD   "When I was a Fellow at the NIH, we were doing a Phase 2 clinical trial, looking at, for want of a better word, "blowing up" eosinophils in patients who have a lot of them, hypereosinophilic syndrome patients." — Fei Li Kuang, MD, PhD   "We're at a point where we've recruited a lot of people. I've had patients drive from the northern part of Illinois … come down and give me blood. It's amazing what people want to do and are willing to do. It's very humbling, actually." — Fei Li Kuang, MD, PhD   "You erase the eosinophils from the picture, but that message is still coming. Who's carrying out the orders? Or is that message maintaining the wall of epithelial cells in a certain way that we didn't appreciate because the eosinophils were also there?" — Fei Li Kuang, MD, PhD   "We need to be proactive in creating the datasets in a standard way so that we can compare and have a more fruitful and diverse community of data." — Fei Li Kuang, MD, PhD   "I think it's worthwhile to participate [in a clinical trial], not only for the future people but for yourself." — Fei Li Kuang, MD, PhD   Guest Bio: Fei Li Kuang, MD, PhD, is currently an Assistant Professor in the Division of Allergy and Immunology at Northwestern University Feinberg School of Medicine in Chicago, IL. She is a graduate of the Albert Einstein College of Medicine Medical Scientist Training Program with both a PhD in Cell Biology/Immunology and an MD.  She completed her Internal Medicine Residency at Columbia University, New York Presbyterian Hospital in New York City, she did her Fellowship in Allergy and Immunology at the National Institute of Allergy and Infectious Disease (NIAID) in Bethesda, Maryland. She is a physician-scientist who takes care of patients with eosinophilic disorders and also performs laboratory research on these disorders in her lab, often using patient samples.

In this episode, Dr. Vincent Mukkada (Cincinnati) joins us to demystify eosinophilic esophagitis (EoE). Together, we explore how to take a good history in children in whom EoE is suspected, treatment strategies, and innovations for ongoing monitoring. Whether you're managing the initial diagnosis or ongoing care for these patients, the conversation won't get stuck thanks to an episode full of helpful information for you!

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Evan S. Dellon, MD, and Elizabeth T. Jensen, PhD, about a paper they published on predictors of patients receiving no medication for treatment of eosinophilic esophagitis. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [:52] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:14] Holly introduces today's topic, predictors of not using medication for EoE, and today's guests, Dr. Evan Dellon and Dr. Elizabeth Jensen.   [1:29] Dr. Dellon is an Adjunct Professor of Epidemiology at the University of North Carolina School of Medicine in Chapel Hill. He is also the Director of the UNC Center for Esophageal Diseases and Swallowing.   [1:42] Dr. Dellon's main research interest is in the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of eosinophilic esophagitis (EoE) and eosinophilic GI diseases (EGIDs).   [1:55] Dr. Jensen is a Professor of Epidemiology with a specific expertise in reproductive, perinatal, and pediatric epidemiology. She has appointments at both Wake Forest University School of Medicine and the University of North Carolina at Chapel Hill.   [2:07] Her research primarily focuses on etiologic factors in the development of pediatric immune-mediated chronic diseases, including understanding factors contributing to disparities in health outcomes.   [2:19] Both Dr. Dellon and Dr. Jensen also serve on the Steering Committee for EGID Partners Registry.   [2:24] Ryan thanks Dr. Dellon and Dr. Jensen for joining the podcast today.   [2:29] Dr. Dellon was the first guest on this podcast. It is wonderful to have him back for the 50th episode! Dr. Dellon is one of Ryan's GI specialists. Ryan recently went to North Carolina to get a scope with him.   [3:03] Dr. Dellon is an adult gastroenterologist at the University of North Carolina at Chapel Hill. He directs the Center for Esophageal Diseases and Swallowing. Clinically and research-wise, he is focused on EoE and other eosinophilic GI diseases.   [3:19] His research interests span the entire field, from epidemiology, diagnosis, biomarkers, risk factors, outcomes, and a lot of work, more recently, on treatments.   [3:33] Dr. Jensen has been on the podcast before, on Episode 27. Holly invites Dr. Jensen to tell the listeners more about herself and her work with eosinophilic diseases.   [3:46] Dr. Jensen has been working on eosinophilic gastrointestinal diseases for about 15 years. She started some of the early work around understanding possible risk factors for the development of disease.   [4:04] She has gone on to support lots of other research projects, including some with Dr. Dellon, where they're looking at gene-environment interactions in relation to developing EoE.   [4:15] She is also looking at reproductive factors as they relate to EoE, disparities in diagnosis, and more. It's been an exciting research trajectory, starting with what we knew very little about and building to an increasing understanding of why EoE develops.   [5:00] Dr. Dellon explains that EoE stands for eosinophilic esophagitis, a chronic allergic condition of the esophagus.   [5:08] You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have EoE, it is a long-term condition.   [5:24] Eosinophils are a type of white blood cell, specializing in allergy responses. Normally, they are not in the esophagus. When we see them there, we worry about an allergic process. When that happens, that's EoE.   [5:40] Over time, the inflammation seen in EoE and other allergic cell activity causes swelling and irritation in the esophagus. Early on, this often leads to a range of upper GI symptoms — including poor growth or failure to thrive in young children, abdominal pain, nausea, and symptoms that can mimic reflux.   [5:58] In older kids, symptoms are more about trouble swallowing. That's because the swelling that happens initially, over time, may turn into scar tissue. So the esophagus can narrow and cause swallowing symptoms like food impaction.   [6:16] Ryan speaks of living with EoE for decades and trying the full range of treatment options: food elimination, PPIs, steroids, and, more recently, biologics.   [6:36] Dr. Dellon says Ryan's history is a good overview of how EoE is treated. There are two general approaches to treating the underlying condition: using medicines and/or eliminating foods that we think may trigger EoE from the diet.   [6:57] For a lot of people, EoE is a food-triggered allergic condition.   [7:01] The other thing that has to happen in parallel is surveying for scar tissue in the esophagus. If that's present and people have trouble swallowing, sometimes stretching the esophagus is needed through esophageal dilation.   [7:14] There are three categories of medicines used for treatment. Proton pump inhibitors are reflux meds, but they also have an anti-allergy effect in the esophagus.   [7:29] Topical steroids are used to coat the esophagus and produce an anti-inflammatory effect. The FDA has approved a budesonide oral suspension for that.   [7:39] Biologics, which are generally systemic medications, often injectable, can target different allergic factors. Dupilumab is approved now, and there are other biologics that are being researched as potential treatments.   [7:51] Even though EoE is considered an allergic condition, we don't have a test to tell people what they are allergic to. If it's a food allergy, we do an empiric elimination diet because allergy tests aren't accurate enough to tell us what the EoE triggers are.   [8:10] People will eliminate foods that we know are the most common triggers, like milk protein, dairy, wheat, egg, soy, and other top allergens. You can create a diet like that and then have a response to the diet elimination.   [8:31] Dr. Jensen and Dr. Dellon recently published an abstract in the American Journal of Gastroenterology about people with EoE who are not taking any medicine for it. Dr. Jensen calls it a real-world data study, leveraging electronic health record patient data.   [8:51] It gives you an impression of what is actually happening, in terms of treatments for patients, as opposed to a randomized control trial, which is a fairly selected patient population. This is everybody who has been diagnosed, and then what happens with them.   [9:10] Because of that, it gives you a wide spectrum of patients. Some patients are going to be relatively asymptomatic. It may be that we arrived at their diagnosis while working them up for other potential diagnoses.   [9:28] Other patients are going to have rather significant impacts from the disease. We wanted to get an idea of what is actually happening out there with the full breadth of the patient population that is getting diagnosed with EoE.   [9:45] Dr. Jensen was not surprised to learn that there are patients who had no pharmacologic treatment.   [9:58] Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are early in their disease process and still exploring dietary treatment options.   [10:28] Holly sees patients from infancy to geriatrics, and if they're not having symptoms, they wonder why bother treating it.   [10:42] Dr. Jensen says it's a point of debate on the implications of somebody who has the disease and goes untreated. What does that look like long-term? Are they going to develop more of that fibrostenotic pattern in their esophagus without treatment?   [11:07] This is a question we're still trying to answer. There is some suggestion that for some patients who don't manage their disease, we very well may be looking at a food impaction in the future.   [11:19] Dr. Dellon says we know overall for the population of EoE patients, but it's hard to know for a specific patient. We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range.   [11:39] Some people get symptoms and get diagnosed right away. Others might have symptoms for 20 or 30 years that they ignore, or don't have access to healthcare, or the diagnosis is missed.   [11:51] What we see consistently is that people who may be diagnosed within a year or two may only have a 10 or 20% chance of having that stricture and scar tissue in the esophagus, whereas people who go 20 years, it might be 80% or more.   [12:06] It's not everybody who has EoE who might end up with that scar tissue, but certainly, it's suggested that it's a large majority.   [12:16] That's before diagnosis. We have data that shows that after diagnosis, if people go a long time without treatment or without being seen in care, they also have an increasing rate of developing strictures.    [12:29] In general, the idea is yes, you should treat EoE, because on average, people are going to develop scar tissue and more symptoms. For the patient in front of you with EoE but no symptoms, what are the chances it's going to get worse? You don't know.   [13:04] There are two caveats with that. The first is what we mean by symptoms. Kids may have vomiting and growth problems. Adults can eat carefully, avoiding foods that hang up in the esophagus, like breads and overcooked meats, sticky rice, and other foods.   [13:24] Adults can eat slowly, drink a lot of liquid, and not perceive they have symptoms. When someone tells Dr. Dellon they don't have symptoms, he will quiz them about that. He'll even ask about swallowing pills.    [13:40] Often, you can pick up symptoms that maybe the person didn't even realize they were having. In that case, that can give you some impetus to treat.   [13:48] If there really are no symptoms, Dr. Dellon thinks we're at a point where we don't really know what to do.   [13:54] Dr. Dellon just saw a patient who had a lot of eosinophils in their small bowel with absolutely no GI symptoms. He said, "I can't diagnose you with eosinophilic enteritis, but you may develop symptoms." People like that, he will monitor in the clinic.   [14:14] Dr. Dellon will discuss it with them each time they come back for a clinic visit.   [14:19] Holly is a speech pathologist, but also sees people for feeding and swallowing. The local gastroenterologist refers patients who choose not to treat their EoE to her. Holly teaches them things they should be looking out for.   [14:39] If your pills get stuck or if you're downing 18 ounces during a mealtime, maybe it's time to treat it. People don't see these coping mechanisms they use that are impacting their quality of life. They've normalized it.   [15:30] Dr. Dellon says, of these people who aren't treated, there's probably a subset who appropriately are being observed and don't have a medicine treatment or are on a diet elimination.   [15:43] There's also probably a subset who are inappropriately not on treatment. It especially can happen with students who were under good control with their pediatric provider, but moved away to college and didn't transfer to adult care.   [16:08] They ultimately come back with a lot of symptoms that have progressed over six to eight years.   [16:18] Ryan meets newly diagnosed adult patients at APFED's conferences, who say they have no symptoms, but chicken gets caught in their throat. They got diagnosed when they went to the ER with a food impaction.   [16:38] Ryan says you have to wonder at what point that starts to get reflected in patient charts. Are those cases documented where someone is untreated and now has EoE?   [16:49] Ryan asks in the study, "What is the target EGID Cohort and why was it selected to study EoE? What sort of patients were captured as part of that data set?"   [16:58] Dr. Jensen said they identified patients with the ICD-10 code for a diagnosis of EoE. Then they looked to see if there was evidence of symptoms or complications in relation to EoE. This was hard; some of these are relatively non-specific symptoms.   [17:23] These patients may have been seeking care and may have been experiencing some symptoms that may or may not have made it into the chart. That's one of the challenges with real-world data analyses.   [17:38] Dr. Jensen says they are using data that was collected for documenting clinical care and for billing for clinical care, not for research, so it comes with some caveats when doing research with this data.   [18:08] Research using electronic health records gives a real-world perspective on patients who are seeking care or have a diagnosis of EoE, as opposed to a study trying to enroll a patient population that potentially isn't representative of the breadth of individuals living with EoE.   [18:39] Dr. Dellon says another advantage of real-world data is the number of patients. The largest randomized controlled trials in EoE might have 400 patients, and they are incredibly expensive to do.   [18:52] A study of electronic health records (EHR) is reporting on the analysis of just under 1,000. The cohort, combined from three different centers, has more than 1,400 people, a more representative, larger population.    [19:16] Dr. Dellon says when you read the results, understand the limitations and strengths of a study of health records, to help contextualize the information.   [19:41] Dr. Dellon says it's always easier to recognize the typical presentations. Materials about EoE and studies he has done that led to medicine approvals have focused on trouble swallowing. That can be relatively easily measured.   [20:01] Patients often come to receive care with a food impaction, which can be impactful on life, and somewhat public, if in a restaurant or at work. Typical symptoms are also the ones that get you diagnosed and may be easier to treat.   [20:26] Dr. Dellon wonders if maybe people don't treat some of the atypical symptoms because it's not appreciated that they can be related to EoE.   [20:42] Holly was diagnosed as an adult. Ryan was diagnosed as a toddler. Holly asks what are some of the challenges people face in getting an EoE diagnosis.   [20:56] Dr. Jensen says symptoms can sometimes be fairly non-specific. There's some ongoing work by the CEGIR Consortium trying to understand what happens when patients come into the emergency department with a food bolus impaction.   [21:28] Dr. Jensen explains that we see there's quite a bit of variation in how that gets managed, and if they get a biopsy. You have to have a biopsy of the esophagus to get a diagnosis of EoE.   [21:45] If you think about the steps that need to happen to get a diagnosis of EoE, that can present barriers for some groups to ultimately get that diagnosis.   [21:56] There's also been some literature around a potential assumption about which patients are more likely to be at risk. Some of that is still ongoing. We know that EoE occurs more commonly in males in roughly a two-to-one ratio. Not exclusively in males, obviously, but a little more often in males.   [22:20] We don't know anything about other groups of patients that may be at higher risk. That's ongoing work that we're still trying to understand. That in itself can also be a barrier when there are assumptions about who is or isn't likely to have EoE.   [23:02] Dr. Dellon says that in adolescents and adults, the typical symptoms are trouble swallowing and food sticking, which have many causes besides EoE, some of which are more common.   [23:18] In that population, heartburn is common. Patients may report terrible reflux that, on questioning, sounds more like trouble swallowing than GERD. Sometimes, with EoE, you may have reflux that doesn't improve. Is it EoE, reflux, or both?   [24:05] Some people will have chest discomfort. There are some reports of worsening symptoms with exercise, which brings up cardiac questions that have to be ruled out first.   [24:19] Dr. Dellon mentions some more atypical symptoms. An adult having pain in the upper abdomen could have EoE. In children, the symptoms could be anything in the GI tract. Some women might have atypical symptoms with less trouble swallowing.   [24:58] Some racial minorities may have those kinds of symptoms, as well. If you're not thinking of the condition, it's hard to make the diagnosis.   [25:08] Dr. Jensen notes that there are different cultural norms around expressing symptoms and dietary patterns, which may make it difficult to parse out a diagnosis.   [25:27] Ryan cites a past episode where access to a GI specialist played a role in diagnosing patients with EoE. Do white males have more EoE, or are their concerns just listened to more seriously?   [25:57] Ryan's parents were told when he was two that he was throwing up for attention. He believes that these days, he'd have a much easier time convincing a doctor to listen to him. From speaking to physicians, Ryan believes access is a wide issue in the field.   [26:23] Dr. Dellon tells of working with researchers at Mayo in Arizona and the Children's Hospital of Phoenix. They have a large population of Hispanic children with EoE, much larger than has been reported elsewhere. They're working on characterizing that.   [26:49] Dr. Dellon describes an experience with a visiting trainee from Mexico City, where there was not a lot of EoE reported. The trainee went back and looked at the biopsies there, and it turned out they were not performing biopsies on patients with dysphagia in Mexico City.   [27:13] When he looked at the patients who ended up getting biopsies, they found EoE in 10% of patients. That's similar to what's reported out of centers in the developed world. As people are thinking about it more, we will see more detection of it.   [27:30] Dr. Dellon believes those kinds of papers will be out in the next couple of months, to a year.   [27:36] Holly has had licensure in Arizona for about 11 years. She has had nine referrals recently of children with EoE from Arizona. Normally, it's been one or two that she met at a conference.   [28:00] Ryan asks about the research on patients not having their EoE treated pharmacologically. Some treat it with food avoidance and dietary therapy. Ryan notes that he can't have applesauce, as it is a trigger for his EoE.   [28:54] Dr. Jensen says that's one of the challenges in using the EHR data. That kind of information is only available to the researchers through free text. That's a limitation of the study, assessing the use of dietary elimination approaches.   [29:11] Holly says some of her patients have things listed as allergies that are food sensitivities. Ryan says it's helpful for the patients to have their food sensitivities listed along with their food allergies, but it makes records more difficult to parse for research.   [30:14] Dr. Dellon says they identify EoE by billing code, but the codes are not always used accurately. Natural Language Processing can train a computer system to find important phrases. Their collaborators working on the real-world data are using it.   [30:59] Dr. Dellon hopes that this will be a future direction for this research to find anything in the text related to diet elimination.   [31:32] Dr. Jensen says that older patients were less likely to seek medication therapy. She says it's probably for a couple of reasons. First, older patients may have been living with the disease for a long time and have had compensatory mechanisms in place.   [32:03] The other reason may be senescence or burnout of the disease, long-term. Patients may be less symptomatic as they get older. That's a question that remains to be answered for EoE. It has been seen in some other disease processes.   [32:32] Dr. Dellon says there's not much data specifically looking at EoE in the older population. Dr. Dellon did work years ago with another doctor, and they found that older patients had a better response to some treatments, particularly topical steroids.   [32:54] It wasn't clear whether it was a milder aspect of the disease, easier to treat, or because they were older and more responsible, taking their medicines as prescribed, and having a better response rate. It's the flip side of work in the pediatric population.   [33:16] There is an increasingly aging population with EoE. Young EoE patients will someday be over 65. Dr. Dellon hopes there will be a cure by that point, but it's an expanding population now.   [33:38] Dr. Jensen says only a few sites are contributing data, so they hope to add additional sites to the study. For some of the less common outcomes, they need a pretty large patient sample to ask some of those kinds of questions.   [33:55] They will continue to follow up on some of the work that this abstract touched on and try to understand some of these issues more deeply.   [34:06] Dr. Dellon mentions other work within the cohort. Using Natural Language Processing, they are looking at characterizing endoscopy information and reporting it without a manual review of reports and codes. You can't get that from billing data.   [34:29] Similarly, they are trying to classify patient severity by the Index of Severity with EoE, and layer that on looking at treatments and outcomes based on disease severity. Those are a couple of other directions where this cohort is going.   [34:43] Holly mentions that this is one of many research projects Dr. Jensen and Dr. Dellon have collaborated on together. They also collaborate through EGID Partners. Holly asks them to share a little bit about that.   [34:53] Dr. Jensen says EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join.   [35:07] EGID Partners also needs people who don't live with an EGID to join, as controls. That gives the ability to compare those who are experiencing an EGID relative to those who aren't.   [35:22] When you join EGID Partners, they provide you with a set of questionnaires to complete. Periodically, they push out a few more questionnaires.   [35:33] EGID Partners has provided some really great information about patient experience and answered questions that patients want to know about, like joint pain and symptoms outside the GI tract.   [36:04] To date, there are close to 900 participants in the registry from all over the world. As it continues to grow, it will give the ability to look at the patient experience in different geographical areas.   [36:26] Dr. Dellon says we try to have it be interactive, because it is a collaboration with patients. The Steering Committee works with APFED and other patient advocacy groups from around the world.    [36:41] The EGID Partners website shows general patient locations anonymously. It shows the breakdown of adults with the condition and caregivers of children with the condition, the symptom distribution, and the treatment distribution.   [37:03] As papers get published and abstracts are presented, EGID Partners puts them on the website. Once someone joins, they can suggest a research idea. Many of the studies they have done have come from patient suggestions.   [37:20] If there's an interesting idea for a survey, EGID Partners can push out a survey to everybody in the group and answer questions relatively quickly.   [37:57] Dr. Dellon says a paper came out recently about telehealth. EoE care, in particular, is a good model for telehealth because it can expand access for patients who don't have providers in their area.   [38:22] EoE is a condition where care involves a lot of discussion but not a lot of need for physical exams and direct contact, so telehealth can make things very efficient.    [38:52] EGID Partners surveyed patients about telehealth. They thought it was efficient and saved time, and they had the same kind of interactions as in person. In general, in-state insurance covered it. Patients were happy to do those kinds of visits again.   [39:27] Holly says Dr. Furuta, herself, and others were published in the Gastroenterology journal in 2019 about starting to do telehealth because patients coming to the Children's Hospital of Colorado from out of state had no local access to feeding therapy.   [39:50] Holly went to the board, and they allowed her to get licensure in different states. She started with some of the most impacted patients in Texas and Florida in 2011 and 2012. They collected data. They published in 2019 about telehealth's positive impact.   [40:13] When 2020 rolled around, Holly had trained a bunch of people on how to do feeding therapy via telehealth. You have to do all kinds of things, like make yourself disappear, to keep the kids engaged and in their chairs!   [40:25] Now it is Holly's primary practice. She has licenses in nine states. She sees people all over the country. With her diagnosis, her physicians at Mass General have telehealth licensure in Maine. She gets to do telehealth with them instead of driving two hours.   [40:53] Dr. Jensen tells of two of the things they hope to do at EGID Partners. One is trying to understand more about reproductive health for patients with an EGID diagnosis. Only a few studies have looked at this question, and with very small samples.   [41:15] As more people register for EGID Partners, Dr. Jensen is hoping to be able to ask some questions related to reproductive health outcomes.   [41:27] The second goal is a survey suggested by the Student Advisory Committee, asking questions related to the burden of disease specific to the teen population.   [41:48] This diagnosis can hit that population particularly hard, at a time when they are trying to build and sustain friendships and are transitioning to adult care and moving away from home. This patient population has a unique perspective we wanted to hear.   [42:11] Dr. Jensen and Dr. Dellon work on all kinds of other projects, too.   [42:22] Dr. Dellon says they have done a lot of work on the early-life factors that may predispose to EoE. They are working on a large epidemiologic study to get some insight into early-life factors, including factors that can be measured in baby teeth.   [42:42] That's outside of EGID Partners. It's been ongoing, and they're getting close, maybe over the next couple of years, to having some results.   [43:03] Ryan says all of those projects sound so interesting. We need to have you guys back to dive into those results when you have something finalized.   [43:15] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes below.   [43:22] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at apfed.org/specialist.   [43:31] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.   [43:41] Ryan thanks Dr. Dellon and Dr. Jensen for joining us today. This was a fantastic conversation. Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode: Evan S. Dellon, MD, MPH, Academic Gastroenterologist, University of North Carolina School of Medicine   Elizabeth T. Jensen, MPH, PhD, Epidemiologist, Wake Forest University School of Medicine, University of North Carolina at Chapel Hill   Predictors of Patients Receiving No Medication for Treatment of Eosinophilic Esophagitis in the United States: Data from the TARGET-EGIDS Cohort   Episode 15: Access to Specialty Care for Eosinophilic Esophagitis (EoE)   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections apfed.org/research/clinical-trials   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   "I've been working on eosinophilic gastrointestinal diseases for about 15 years. I started some of the early work around understanding possible risk factors for the development of disease. I've gone on to support lots of other research projects." — Elizabeth T. Jensen, MPH, PhD   "You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have it, it really is a long-term condition." — Evan S. Dellon, MD, MPH   "There are two general approaches to treating the underlying condition, … using medicines and/or eliminating foods from the diet that we think may trigger EoE. I should say, for a lot of people, EoE is a food-triggered allergic condition." — Evan S. Dellon, MD, MPH   "I didn't find it that surprising [that there are patients who had no treatment]. Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are … still exploring dietary treatment options." — Elizabeth T. Jensen, MPH, PhD   "We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range. Some people get symptoms and are diagnosed right away. Other people might have symptoms for 20 or 30 years." — Evan S. Dellon, MD, MPH   "EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join. EGID Partners also needs people who don't live with an EGID to join, as controls." — Elizabeth T. Jensen, MPH, PhD

Flameo, Hotman! It's time for us to dust off the, uh, Spiderwebs and dive into one of the most anticipated limited sets in a long time! Clues, red mana rituals, convoke (kinda) and counters? Unite these elements of limited gameplay and save... your winrate! We use Vector Theory to analyze the 10 new archetypes for draft and sealed. Let us know what you think!Join our free Discord server here: https://discord.gg/P4wQqGdYou can support Tyler and Ben on Patreon here: https://patreon.com/draftchaffpodListen to the podcast https://podcasters.spotify.com/pod/show/draft-chaffFollow us on Bluesky: https://bsky.app/profile/draftchaff.bsky.socialCheck out the Draft Chaff Cube: https://cubecobra.com/cube/overview/draftchaffReach us at: draftchaffpod@gmail.com#magicthegathering #draftchaff #draft #limited #sealed #podcast #EOE #edgeofeternities #mtgeoe #mtglimited #mtgdraftguide

Just like with food allergies, there are other conditions where avoiding certain foods is essential. One of those is Eosinophilic Gastrointestinal Disease, or EGID. To help us better understand this complex condition, we're joined today by Melissa Sauter—an advocate, parent, and Founder of Eosinophilic Parents of Utah. Melissa brings both personal experience and deep knowledge, and her positive outlook will leave you not only inspired but also better informed about life with EGID.Resources to keep you in the know:Eosinophilic Patients of Utah Facebook GroupFAACT's Related Conditions and Disorders Associated with Food AllergyAmerican Partnership for Eosinophilic Disorders (APFED)Campaign for Urging Research for Eosinophilic Disease Foundation (CURED)You can find FAACT's Roundtable Podcast on Apple Podcasts, Pandora, Spotify, Podbay, iHeart Radio, or wherever you listen to podcasts.Follow us on Facebook, Instagram, BlueSky, Threads, LinkedIn, Pinterest, TikTok, and YouTube.Sponsored by: TakedaThanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

On today's episode we welcome a new group to the Dischord roster. Fan favorite Jeff Kaplan returns to help initiate Norman Mayer Group into the EOE family. We talk about the heavy elements, in both sound and lyrics, of these tracks and scrape the internet for the scraps we could find about their history. Then drummer/vocalist Kathy Sawhill joins the conversation to flesh out the band's essence and time.endonendpod@gmail.com

Summary In this truncated replay, Dr. Shyam Joshi explores the intersection between allergy and dermatology—focusing on how chronic spontaneous urticaria (CSU), atopic dermatitis, and food allergies often overlap. Learn how emerging biologics like omalizumab and dupilumab are reshaping treatment decisions, why comorbidities matter, and how collaboration between allergists and dermatologists creates better outcomes for patients with complex allergic and dermatologic conditions. This episode dives into real-world case studies, FDA updates on antihistamines, and the multidisciplinary approach to managing eczema and CSU in pediatric and adult populations. Takeaways - FDA Advisory on Antihistamines: Long-term use of cetirizine or levocetirizine can lead to rebound pruritus upon discontinuation—but gradual tapering minimizes symptoms. - Biologic Selection Depends on Comorbidities: - Omalizumab is effective for IgE-mediated food allergies and chronic urticaria. - Dupilumab is preferred for patients with eosinophilic esophagitis (EoE) or moderate-to-severe atopic dermatitis. - CSU Is Systemic: Symptoms may extend beyond hives—impacting joints, sleep, and energy levels. - Comorbid Conditions Are Common: Up to 20 % of CSU patients have asthma, allergic rhinitis, or food allergies; identifying these helps guide treatment and patient education. - Unified Messaging Builds Trust: Consistent communication from both dermatologists and allergists reduces unnecessary testing and supports adherence to treatment plans. Chapters 00:00 - Introduction: Bridging Allergy and Dermatology 00:45 - Case Study: An 18-Year-Old with Chronic Urticaria 02:00 - FDA Warning: Antihistamine Withdrawal Itch 03:45 - Selecting the Right Biologic: Food Allergy Considerations 04:45 - Eosinophilic Esophagitis and CSU         05:35 - The Systemic Nature of CSU 06:40 - Comorbidities in CSU and Atopic Patients 07:30 - Multidisciplinary Collaboration in Practice 08:00 - Closing Thoughts & Educational Disclaimer

When a child has trouble eating, gaining weight, or explaining discomfort while swallowing, it can be heartbreaking for parents and confusing for the child. These may be early signs of Eosinophilic Esophagitis (EoE) — a chronic inflammatory condition of the esophagus that affects how food moves through the digestive tract. In this episode, pediatric gastroenterologist Dr. Joshua B. Wechsler from Northwestern Medicine shares what families need to know about recognizing EoE early, getting an accurate diagnosis, and navigating treatment options. He also offers guidance on helping children manage EoE at school, during meals, and in social settings — so they can live healthier, happier lives. See related episode   Growing Up with EoE: A Family's Journey from Childhood to College Resources & Support: Find trusted, evidence-based information and resources on EoE at gastrogirl.com. This episode is sponsored by Sanofi and Regeneron.  

What's it really like for a child to live with eosinophilic esophagitis (EoE)? In this inspiring episode, we sit down with Jeni and her son Joshua, who share their family's journey navigating the challenges of pediatric EoE. From the earliest warning signs to Joshua preparing for life at college, their story sheds light on the resilience it takes to manage this condition day-to-day. Together, we explore: Why getting the right diagnosis can take time The pros and cons of today's treatment options How parents can interpret symptoms when children struggle to describe them Tips for transitioning from pediatric to adult care Whether you're a parent, patient, or healthcare provider, you'll walk away with insights, encouragement, and practical takeaways. Resources & Support: Find trusted information and resources on EoE at gastrogirl.com. This episode is sponsored by Sanofi and Regeneron.  

This week on Limited Resources Marshall and Luis send Edge of Eternities off into the void with the Sunset Show! EoE was the most balanced set we've... had, ever? But at the same time there were things that were lacking. The guys go over all of that and give the set a final grade at the end, complete with favorite cards, artwork, etc. Enjoy!  You can support Limited Resources on the LR Patreon page here: https://www.patreon.com/limitedresources LR is brought to you buy Ultimate Guard! Check out the best gear here: https://ultimateguard.com/en/ Your Hosts: Marshall Sutcliffe and Luis Scott-Vargas Marshall's Twitter: https://twitter.com/Marshall_LR Luis's Twitter: https://twitter.com/lsv LR Community Subreddit: http://www.reddit.com/r/lrcast

I know it feels like we just started talking about Edge of Eternities previews, but it's time to say goodbye! Spider-Man/Through the Omenpaths is right around the corner so it's time for us to look back on EOE and see how our Worth a Slot and Pack 0 Pick 1s look now!Follow us on:Bluesky:⁠ ⁠https://bsky.app/profile/arenaregulars.bsky.social⁠⁠Instagram:⁠⁠ https://www.instagram.com/arenaregulars⁠⁠Discord:⁠⁠ https://discord.gg/hTbDVfJtFd⁠⁠Youtube:⁠ ⁠⁠⁠https://www.youtube.com/channel/UCecowxVAsrSHCMLBUedouAw⁠⁠Zach's Stream:⁠ ⁠⁠⁠https://www.twitch.tv/regular_zach⁠⁠Wanna support the show even more?Patreon:⁠⁠ https://www.patreon.com/arenaregulars⁠⁠

Hot or Cold: Introducing Blackjack Theory | Episode 441 Welcome to Lords of Limited, the podcast dedicated to getting you better at drafting in Magic: the Gathering. This week, we begin by outlining the Big Red decks in EOE, what makes them so strong and the package of commons that lets you ramp out a Nebula Dragon on turn 5! Then, we get into the main topic of a new way to evaluate deck strength that we're calling Blackjack Theory. We outline this process and put it into practice for a few different decks. We also discuss some broader thoughts about staying open in this format and drafting high quality cards inspired by a conversation from the jointexploration twitch stream and members of Team Sanctum of All.

James and Cliff go over the hottest paper and digital cardboard this week, the latest metagame results, their cards to watch for the week and check with EDHREC to examine the top EDH cars from FIN and EOE.

The dorks head back into the Edge of Eternities gallery, poking around at cards in the set that are neat and tripping into tangents along the way. After a while we pause our gallery perusal and start discussing some of the potential ramifications of EoE and its setting and mechanics. Will we be coming back to the Edge in the future? Will spaceships (or other things to Station) become as ubiquitous as vehicles? Does this mean more sci-fi Universes Beyond will be coming up? It's just a good old-fashioned dork discussion, so let us know what you think! Edge of Eternities Gallery - https://magic.wizards.com/en/products/edge-of-eternities/card-image-gallery Become a Lifeguard on Patreon! – patreon.com/themanapool Podcast RSS Feed: themanapool.libsyn.com/rss YouTube: youtube.com/TheManaPool The Deep End: youtube.com/@TheDeepEndTMP TMP Streams Archive: youtube.com/@TMPStreams Twitch: twitch.tv/themanapool Discord: discord.gg/7da7T6s BlueSky: themanapool.bsky.social Instagram: TheManaPool Threads: @TheManaPool Email: dorks@themanapool.com Intro & Outro Music: Diamond by Swift – https://open.spotify.com/artist/0vAs5HIBkUPbuoN5b5GWTE

In this episode, we share Wendy's story of living with Eosinophilic Esophagitis (EoE). She takes us through the confusing early symptoms, the long road to getting a diagnosis, and how she manages her condition today. With honesty and hope, Wendy offers a patient's perspective on what it means to live with EoE. Hear Wendy discuss: The first signs that something was wrong with her throat How symptoms disrupted her eating, social life, and mental health The coping strategies she unknowingly developed along the way What it was like to finally receive an accurate diagnosis and treatment plan Resources & Support:Learn more about EoE and find trusted resources at gastrogirl.com. This episode was made possible with support from Sanofi and Regeneron.

Holy Ship! | First Week Info Dump for EOE Welcome to Lords of Limited, the podcast dedicated to getting you better at drafting in Magic: the Gathering. This week, we're looking at all things Edge of Eternities after 1 week of drafting in the books! We talk about what we've been winning with in EOE (hint: it's not green), what the data tells us (both genpop and top players), what the lack of fixing means for the drafts, and the importance of proper card evaluation to your success in the format!

Welcome back Pauper fam! This week Cameron leads us into a Magic game-theory discussion centered around the classic article "Who's The Beatdown" by Mike Flores. For an article that's over 25 years old it's amazing how relevant these concepts are in modern Magic and especially in Pauper. Then he conversation gets derailed by the inevitable opinions about the Spider-Man spoilers that have begun to surface. Let's hope this doesn't take away the spotlight from how many sweet Edge of Eternities cards are going to see play in our format! Tune into our Common Ground Cup stream on Saturday to see if EOE makes a big splash and to find out who will take the 2nd trophy home! Thank you as always for listening fam!Join our Discord! https://discord.gg/kdvSavFkpzCheck out our YouTube channel: https://www.youtube.com/@CommonGroundMTGUpcoming Pauper Events:8/2 The 2nd Common Ground Cup (Pauper $1k+) @ Game Knight, Columbia TN! https://topdeck.gg/event/the-2nd-common-ground-cup-a-pauper-eventCGCup2 Livestreams: Twitch: https://www.twitch.tv/gameknighttn YouTube: https://www.youtube.com/@GameKnightTN8/9 Upstate NY Pauper Open II in Rochester, NY: https://www.spicerack.gg/events/19479438/16 Deadly Dispute Memoriam Event by Court of Commons @ Enchanted Gaming Emporium, Murray KY: https://discord.gg/KzftMPfjzu8/23 Pauper $2k @ NRG Lansing (feat. RIW points!): https://www.spicerack.gg/events/2241392RIW Pauper Championship Series Info: https://riwhobbies.com/2025-riw-pauper-championship-series-invitational/Any questions or feedback for us? Email us at: commongroundmtgpod@gmail.comhttps://twitter.com/CamPlaysMagichttps://twitter.com/ThomasDoesALothttps://twitter.com/Hippo_1124Thomas' BlueSky: @thomasdoesalot.bsky.social Hippo's BlueSky: @hippo2112.bsky.social 

Living with Eosinophilic Esophagitis (EoE)—a chronic, often misunderstood condition—can make eating and even swallowing a daily challenge. In this inspiring episode, patient advocate Matt shares his personal journey navigating life with EoE. From the struggle of getting an accurate diagnosis, to identifying and managing daily food triggers, to finding a treatment plan that works, Matt offers an honest look at the physical, emotional, and social realities of living with this condition. His story sheds light on the resilience, trial-and-error, and determination it takes to keep moving forward. In this episode, we discuss how to: Overcome the challenges of getting a proper EoE diagnosis Tackle daily triggers and make smart dietary changes Fine-tune a treatment plan to get real results Navigate the emotional and social toll of a chronic swallowing condition Whether you're living with EoE, supporting someone who is, or just want to understand this condition better, you'll gain valuable insights, practical tips, and a sense of hope from Matt's journey. Resources & Support: Learn more about EoE and find trusted resources: gastrogirl.com This episode was made possible with support from Sanofi and Regeneron.  

Getting an EDGE | Early Access Updates on EOE Welcome to Lords of Limited, the podcast dedicated to getting you better at drafting in Magic: the Gathering. This week, we're taking what we learned during Early Access and Pre-release to update our thoughts on the good, the bad, and the spacecrafts of EOE. We dive deep on the new card type and how Station played out, plus some archetype and color power rankings, and tons of individual card updates!

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Get ready for a tail-wagging adventure! Oliver Super Beardie, our fearless furry hero and member of the Woof Chat Kids, is back on the case—this time to solve a mysterious throat trouble affecting his buddy Sam. Why is swallowing so hard? What's causing the pain? Oliver's on the trail… and he's sniffing out answers!. Joining Oliver is brilliant expert guest Dr. Sophia Patel, a leading Pediatric Gastroenterologist from Cleveland Clinic. Together with host Jacqueline Gaulin, they'll follow the clues to uncover what's really going on inside Sam's esophagus—and introduce kids (and grown-ups!) to a condition called Eosinophilic Esophagitis (EoE). You'll learn what symptoms to watch for, how EoE is diagnosed, and what steps can help kids like Sam feel better—all in a fun, kid-friendly way that mixes science and heart. A huge shout-out to the incredible John Kennedy, the puppeteer and voice behind Oliver Super Beardie, whose creativity and heart make every episode unforgettable. This special episode is brought to you by Dupixent.  

In this episode of Bowel Sounds Summer School, hosts Drs. Jennifer Lee and Peter Lu have taken highlights from past episodes on eosinophilic esophagitis (EoE) and put them into a special episode jam-packed with clinical pearls. Former expert guests Dr. Glenn Furuta, Dr. Amanda Muir, Dr. Rachel Chevalier, and Dr. Mike Wilsey explain how to diagnose, treat, and monitor patients with EoE.Our Bowel Sounds Summer School series will include 4 episodes each summer on big topics in our field, artisanally crafted for the ears of listeners of all stages from the young student to the seasoned attending.Learning ObjectivesReview clinical presentation and diagnostic criteria for eosinophilic esophagitis (EoE)Review dietary and medication treatment options for EoE Review methods of monitoring treatment response in EoEFeatured EpisodesGlenn Furuta - Eosinophilic EsophagitisAmanda Muir - Navigating the Challenges of Eosinophilic Esophagitis ManagementRachel Chevalier - Update on Topical Steroids for EoEMike Wilsey - Esophageal Strictures in ChildrenSupport the showThis episode may be eligible for CME credit! Once you have listened to the episode, click this link to claim your credit. Credit is available to NASPGHAN members (if you are not a member, you should probably sign up). And thank you to the NASPGHAN Professional Education Committee for their review!As always, the discussion, views, and recommendations in this podcast are the sole responsibility of the hosts and guests and are subject to change over time with advances in the field.Check out our merch website!Follow us on Bluesky, Twitter, Facebook and Instagram for all the latest news and upcoming episodes.Click here to support the show.