Podcasts about eoe

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Description: 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 Dr. Melanie Ruffner, an Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia. Dr. Ruffner describes her work in clinic and the paper she co-authored about pediatric and adult eosinophilic esophagitis (EoE). She covers the questions they considered in the paper and the conclusions they reached. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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 the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:17] Holly introduces today's topic, pediatric and adult eosinophilic esophagitis (EoE), and introduces today's guest, Dr. Melanie Ruffner.   [1:23] Dr. Melanie Ruffner is an attending physician with the Division of Allergy and Immunology in the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia. Holly welcomes Dr. Ruffner to Real Talk.   [1:50] As an attending physician in the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia, Dr. Ruffner sees patients who have eosinophilic esophagitis and other eosinophilic disorders, including eosinophilic GI tract disorders.   [2:09] Dr. Ruffner also leads a research group that studies how the immune system causes inflammation in response to certain foods, leading to EoE.   [2:20] Inflammation in the esophagus is tied to other diseases like epithelial barrier dysfunction and fibrosis.   [2:28] Our bodies use many different proteins that allow cells to communicate with one another. One type of signaling protein that causes inflammation is called cytokines.   [2:41] Dr. Ruffner's group is interested in how these signaling proteins called cytokines interact with epithelial cells and how that impacts the oral function of the esophagus in patients with EoE.   [3:02] In training, Dr. Ruffner became interested in eosinophilic esophagitis and other non-IgE-mediated food allergies because we don't have a lot of clear treatments or clear mechanisms that cause them.   [3:21] Dr. Ruffner felt there was a lot of work to be done in that area. It was rewarding to be in clinical encounters with those patients. Often, patients had spent a long time trying to find out what was happening and to find a treatment plan that worked for them.   [4:31] Dr. Ruffner's group sees some patients who have eosinophilic gastroenteritis and patients who are referred for hypereosinophilia with impacts of inflammation in other organ systems.   [5:06] Dr. Ruffner co-authored a paper about pediatric and adult EoE published in the Journal of Allergy and Clinical Immunology. It explored if EoE in pediatric patients and adult patients is a spectrum or distinct diseases.   [5:29] EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to foods and causes inflammation in the esophagus.   [5:47] Eosinophils are a type of white blood cell. Eosinophils infiltrate the tissue in the esophagus of people with EoE. Doctors look for eosinophils in the tissue of the esophagus as a sign that inflammation in the esophagus is EoE.   [6:04] The symptoms of EoE can vary in children and adults. That was one of the things the doctors were interested in when they were thinking about this paper. There are no blood or allergy tests that make it easy to diagnose EoE, which requires an endoscopy.   [6:31] An endoscopy is performed by a gastroenterologist. The gastroenterologists look at the appearance of the esophagus and take biopsies.   [6:49] A pathologist counts the eosinophils in the tissue to determine if there are eosinophils present. If there are more than 15 eosinophils in the high-powered field of the microscope and symptoms and clinical conditions are present, EoE is diagnosed.   [7:25] One of the variables Dr. Ruffner considers is that symptoms can be different in children versus adults. In older adolescents and adults, the classic symptom is difficulty swallowing or dysphagia. That is often caused by fibrosis in the esophagus.   [7:54] In younger children this is often not how EoE presents. They may vomit or refuse food. They may experience more weight loss. Symptoms vary over the lifespan. Pediatric EoE symptoms of nausea and abdominal pain can also show up in adults.   [9:54] Atopy refers to allergic conditions. In the paper, a history of atopy means a history of allergic conditions, like atopic dermatitis, IgE-mediated food allergy, allergic rhinitis, or asthma.   [10:37] These disorders tend to cluster together, over time, because they share many common genetic risks. They cluster in families because some of the genetic risks are the same. Not every family member will have the same atopic or allergic conditions.   [11:07] In families, perhaps one person will have atopic dermatitis and allergic rhinitis while another will have atopic dermatitis, allergic rhinitis, asthma, and EoE. They may have inherited different genetics or had different environmental exposures.   [11:50] Ryan says that describes his family. They each have different atopic conditions. Ryan got them all! Dr. Ruffner says it describes her family, as well.   [12:26] Dr. Ruffner says it's understandable for families to stress about atopic conditions. Unfortunately, right now, there's no way to predict who will develop which atopic conditions. It's on the minds of the medical and research communities.   [13:10] IgE is an antibody that binds to food allergens and mediates anaphylaxis, usually within 30 minutes, with hives, vomiting, and difficulty breathing. Not everyone with a diagnosed food allergy will be given an epinephrine auto-injector.   [13:44] IgE-mediated food allergies are influenced by type 2 cytokines. Cytokines are immune system signaling proteins that have been labeled as groups. The group that is involved in allergy most heavily is under the label type 2.   [14:15] These type 2 cytokines are responsible for influencing B cells to make IgE. In the tissue in EoE, we find that there is a large amount of these type 2 cytokines present.   [14:37] This is quite relevant because dupilumab, the monoclonal antibody that has been approved to treat EoE, targets type 2 inflammation by blocking type 2 cytokines.   [16:04] Dr. Ruffner says one of the biggest challenges in the field of EoE is we don't have a way to stratify who should get which treatment for EoE. Patients have to choose between diet and pharmacologic therapy.   [16:48] We don't know enough about the inflammatory profiles to give any patient the specific guided information that one therapy would be better than another.   [17:11] Pediatric and adult patients are given the same treatment options. Some dosing, such as proton pump inhibitors and dupilumab, is weight-based so different doses are needed.   [17:36] Over time, people's needs change. From early school age to when people leave home, they may have very different needs. They may do well on diet therapy when their diet is controlled by parents, but, on their own, that may not be the best option for them.   [18:20] Therapy may change over time to support each patient's individual goals. It can be challenging because therapies are imperfect. Each therapy has a percentage probability of success. Not every therapy is guaranteed to work for every individual.   [19:01] There is some flexibility and possibility of switching between therapies to support people. Ryan shares one of his experiences in changing treatments.   [20:03] Some patients are stable on a therapy for a time but then see symptoms creep back up. Dr. Ruffner strongly suggests they talk to their care team for an endoscopy and biopsy to see if they need to switch therapy and if their diet has changed.   [21:31] In young children, Dr. Ruffner sees a much higher incidence of feeding refusal. The child may have a preferred food or a preferred texture like puree, long past when that would be appropriate for the age.   [22:41] It can be very difficult to move past this learned behavior even if remission is achieved through therapy. The child may need feeding therapy to help with that. [22:59] Feeding behaviors in older individuals may be much more subtle. Talk about them with your care team. Needing water to eat, cutting food very small, and fearing to eat around people are common eating behaviors to discuss in older patients.   [23:53] These eating behaviors affect people's well-being deeply because they affect how social they feel when they are around people. Ideally, you want to be around people and share in social times.   [24:16] Holly has used these eating behaviors herself and notices them in other people. When adults come to her for therapy, she asks how many times they refill their water when they eat, and if food ever gets stuck. They are surprised that those are symptoms.   [26:01] Dr. Ruffner says it's important to recognize the difference in symptoms in diagnosing EoE. The main risk factor of EoE is fibrosis, over time. The thought is that early in EoE there is an inflammatory phenotype, but later, there is a fibrotic phenotype.   [26:51] The phenotype refers to the presentation or characteristic of disease. What is the appearance at endoscopy? What do we see in the biopsied tissue? Is there fibrosis or not?   [27:15] This is the crux of the paper: Is this on a spectrum, that the inflammation is driving the fibrosis, or are these two different things altogether? There is some evidence to suggest that the inflammation contributes to this fibrosis over time.   [27:40] One thing that is missing is following a group of patients from the start and having that evidence. There is mechanistic evidence from studies to show that inflammation can contribute to fibrosis. That was one of the discussions in the paper.   [28:29] In endoscopies, something that can be seen with fibrosis or fibrostenotic features is more of an appearance of rings and narrowing of the esophagus. A proportion of patients with strictures or narrowing need to have them dilated.   [29:11] For patients who have dilation, it can help with symptoms significantly. When pathologists look at the tissue with fibrosis, they can see changes in the protein structure. There is more collagen and other changes in the tissue, causing fibrosis.   [30:03] Some patients use adaptive eating behaviors to adapt to significant changes in their esophagus and go for many years without being diagnosed until they present with an impaction when food becomes stuck in their esophagus.   [30:46] This makes EoE a challenging disorder for many because it can be very difficult to diagnose. The journey to a diagnosis is very individual. As a group, adults are much more likely to have fibrosis, leading to dysphagia, strictures, or impaction.   [31:25] Statistically, across all patients, you see fibrosis more in adults than in children.   [32:42] In the paper, Th1 cells are mentioned. Th1 is an immune system term referring to a cell that produces interferon-gamma. Studies show there may be differences in interferon signaling in different age groups but it needs to be studied further.   [33:57] Dr. Ruffner's team had looked at a small group and saw that interferon signaling seemed to be relatively similar between children and adults. Both CD4 and CD8 T cells (types of immune system cells) are potentially producing interferon in the esophagus.   [34:32] More study needs to be done around those immune system cells and their potential significance in EoE, if any.   [35:33] The paper suggests that EoE in children and adults is essentially a spectrum of the same disorder rather than distinct diseases.   [35:42] Aspects of immunology, responses to different treatments across children and adults, the similar responses to diet and different medications, and over time in the same individuals, indicate these are changes and complications over time.   [36:41] Dr. Ruffner suggests that medical researchers need to understand which patients are at the highest risk of complications and work to identify the best treatments to prevent those.   [37:14] Dr. Ruffner is thinking about the response to proton pump inhibitor therapy. One of the things she is looking at is whether or not proton pump inhibitors affect how eosinophils migrate into the tissue.   [37:33] They are finding that it seems that PPIs can decrease the degree of migration of eosinophils into the tissue. They are very interested in looking at that. Ryan says when Dr. Ruffner gets that paper published, she'll have to come back on the show!   [38:06] Ryan thanks Dr. Ruffner. For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit APFED.org and check out the links in the show notes.   [38:15] 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.   [38:24] 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.   [38:33] Ryan thanks Dr. Ruffner for participating in the podcast episode. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode: Dr. Melanie Ruffner, MD, PhD, Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia “Pediatric and adult EoE: A spectrum or distinct diseases?” by Stanislaw J. Gabryszewski, Melanie A. Ruffner, and Jonathan M. Spergel   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   “EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to food allergens and causes inflammation in the esophagus.” — Dr. Melanie Ruffner   “In EoE, there are no blood or allergy tests that make it easy to diagnose EoE without an endoscopy.” — Dr. Melanie Ruffner   “Is EoE on a spectrum, that the inflammation is driving the fibrosis, or are these two different things altogether? There is some evidence to suggest that the inflammation contributes to fibrosis over time.” — Dr. Melanie Ruffner   “When pathologists look at the tissue with fibrosis, they can see the changes in the protein structure.” — Dr. Melanie Ruffner   “There are some folks who have adapted their eating behavior quite significantly and may have quite a number of chronic changes in their esophagus that they have adapted around, and they go for many years without being diagnosed.” — Dr. Melanie Ruffner

Description: 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 Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital and Mass General for Children, on the topic of immunology support for eosinophilic esophagitis (EoE). Dr. Accarino shares his experiences as a person living with food allergies, allergic asthma, peanut allergy, and eosinophilic esophagitis. He tells how his experiences help him in his work with patients. Dr. Accarino shares some education on a variety of allergy mechanisms and the treatments that mitigate them. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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 the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host Holly Knotowicz.   [1:14] Holly introduces today's topic, immunology support for eosinophilic esophagitis (EoE), and introduces today's guest, Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital. Holly welcomes Dr. Accarino to Real Talk.   [1:49] Holly notes that Dr. Accarino is her allergist and immunologist.   [2:03] Dr. Accarino works at Massachusetts General Hospital and Mass General for Children. Allergy and Immunology is a field where he can see pediatrics and adults. Originally trained in pediatrics, now Dr. Accarino sees patients of all ages.   [2:23] Dr. Accarino grew up with allergies. He has experienced food allergies since he was young, along with allergic asthma, and some eczema, which he grew out of. Later in life, he was diagnosed with eosinophilic esophagitis. He talks with his patients about his experiences.   [2:47] Dr. Accarino also does research on drug allergies in the context of certain drug interactions that involve eosinophils.    [3:06] When Holly was referred to Dr. Accarino, it was for multiple sclerosis (MS). He told her, “It looks like you have EoE. I have EoE.” It was a huge relief to Holly not to have to explain EoE to her doctor.   [3:41] Some patients start to explain their EoE to Dr. Accarino, and he assures them he understands where they're coming from. Sometimes, he has to be careful not to think everyone has his symptoms, as there is a large spectrum of presentations.   [4:26] Dr. Accarino wasn't diagnosed with EoE until he was in his allergy fellowship, after he suspected it when he had a food impaction at a steakhouse at a graduation party from his pediatric residency. He tried to manage the EoE with lifestyle changes.   [5:39] Dr. Accarino didn't often go to see a doctor during residency, but he realized it was probably a good time to get an endoscopy.   [5:52] Holly shares how she was also diagnosed as a clinical fellow. She was subbing for someone on the GEDP team at Children's Hospital in Colorado. Listening to all the patients, she realized, “This sounds a little bit like me … What is going on?”   [6:23] Even with his medical background, it took Dr. Accarino some time to decide to get the endoscopy and biopsies. You or your doctor have to have a high level of suspicion to realize this isn't just reflux. Food doesn't get stuck in every person's throat.   [7:01] Thinking back, Dr. Accarino remembers an instance as a child when a dry muffin got stuck in his throat. He stayed calm and waited for it to pass. He thought it was normal.   [7:39] He drank a lot of water and chewed his food a lot. Those are markers of potential esophageal inflammation.   [8:20] Different groups have different management strategies for EoE. Dietary management, topical steroids, biologics. A subgroup of people with EoE are responsive to proton pump inhibitors (PPIs). Finding the best management strategy is a work in progress.   [8:53] With pediatric patients, the parents control the diet, and the children eat what is prepared. He notes that with adult patients, sometimes they let foods slip through.   [9:10] If you want to do a single-food elimination diet with dairy, there's a lot of dairy in the American diet. Dr. Accarino tried eliminating dairy and wheat, but he still had persistent eosinophils with dietary elimination.   [9:24] Dr. Accarino then tried PPIs. To know if you have PPI-responsive EoE, you might do twice-daily omeprazole at a significant dose. Have the endoscopy after a few weeks pass and see if the eosinophils are still present in the biopsy.   [9:59] Dr. Accarino did that recently and still has the eosinophils. He plans to talk to his gastroenterologist about considering dupilumab, but he feels that he can mitigate his subjective day-to-day experience of symptoms with dietary elimination and PPIs.    [10:24] If you still have the presence of eosinophils on biopsy, there's still inflammation happening. In the long term, you still have to worry about fibrosis and narrowing.    [10:34] The last treatment Dr. Accarino tried was as a research participant in a study for dissolvable fluticasone. He received either the medication or a placebo; he doesn't know which.   [11:01] To stay in the study, he had to journal and report his symptoms regularly. He didn't have enough symptoms to stay in the study. They were looking for a baseline to see how it changed with either the placebo or the medication.   [11:20] In research, you have to have a baseline to start, and then you want to see improvement, plus or minus. With EoE, it's difficult. You have the biopsy and eosinophils, but there's a large spectrum of symptoms that people may experience.   [12:40] Holly appreciates Dr. Accarino's unique perspective as a doctor with EoE who has experienced various treatments and diets. He understands the concerns of his patients.   [12:43] Dr. Accarino says even taking a twice-daily PPI or other medication is difficult for a lot of people, and that's the most simple of these therapies.   [13:06] Dr. Accarino wants to validate everyone's experience in terms of how difficult it is to treat this disorder, how it may present in different ways, and how there may be a delay in diagnosis.   [13:16] This isn't IgE-mediated immediate food allergy, where you eat a food and may have swelling within minutes; you may have flushing or hives. That's very clear. With EoE, it's a different mechanism; in many cases, there is a delay.   [14:37] Allergy, in general, is under the purview of clinical immunology. Dr. Accarino is allergic to peanuts and has an  IgE-mediated immediate reaction to them. If he eats a peanut, he has symptoms within minutes. He could have anaphylaxis. As a result, he carries an epinephrine auto-injector.   [15:01] If Dr. Accarino has a skin test, it will be positive for peanut. He has IgE antibodies to peanuts. He also has oral allergy syndrome where the body mistakes certain fruits, vegetables, or nuts with certain tree pollens or grass pollens.   [15:23] Oral allergy syndrome is usually a lower-risk condition where it's a less-stable protein that once cooked might not produce any symptoms. If it's raw when you consume it, you may have oral itching, a bit of throat discomfort, or tongue itching. [15:54] Your stomach acid breaks it down so it doesn't get into your bloodstream and you shouldn't have a systemic reaction.   [16:01] If Dr. Accarino eats a peanut, his stomach acid doesn't break down the high-risk, stable peanut protein, it gets into his bloodstream, and he can have a systemic anaphylactic reaction.   [16:20] Chronic EoE symptoms can present with something like a food impaction, or bad reflux or belly pain, and nausea. The reaction may not be immediate. It may be progressive over days or weeks.   [16:38] FIRE is an interesting condition that takes some time to narrow down. It's an immediate response of the esophagus, but we don't think it's histamine-mediated.   [16:56] We don't know, exactly, the mechanism but it's in people with eosinophilic esophagitis. They feel differently, and there would be different specific food triggers.   [17:11]  It took some time to figure out what was going on. Dr. Accarino felt like he had a lump in his throat, then a lump in his chest, nausea, and belly pain. It felt like a slow progression of EoE symptoms, and it was from specific food triggers, in his case.   [17:30] In some of the FIRE literature, they looked at banana and avocado. For Dr. Accarino, it took a couple of exposures to protein bars and milk protein whey isolate, specific to protein bars he had multiple times, until he figured out that was the trigger.   [17:50] Another protein whey isolate that Dr. Accarino scooped as a powder and made into a shake also led to FIRE.   [17:55] It took that event for Dr. Accarino to figure out it wasn't just a flareup of EoE or reflux but some trigger that caused this response that wasn't anaphylaxis but may be due to the recruitment of eosinophils or some immediate process not well understood.   [18:18] FIRE is going to be very hard to research. How would we figure this out? Would we bring someone in and do an endoscopy immediately and see what happens? There's a lot of descriptive data and case series.   [18:32] Dr. Accarino has had experiences when he knew it wasn't an immediate anaphylactic reaction, oral allergy, or reflux. He asked what else it could be in the context of EoE. When he looked at different case series, that's the presentation he had.   [19:17] Dr. Accarino acknowledges that having personal experience with FIRE, oral allergies, and IgE-mediated allergies, on top of EoE, has influenced his work as a medical professional. He can share anecdotes with patients as he explains the available testing.   [19:39] Dr. Accarino says a lot of immunology and allergy is explaining the diagnostic tools and management strategies we have and what we think is going on.   [19:50] The immune system is infinitely complex, and a lot of the practice is making a digestible analogy, not just in the context of allergic conditions but also everything with the immune system. There are so many cells doing so many different things.   [20:04] Dr. Accarino explains false positives in testing. He has positive scratch tests for peanuts, cashews, and almonds, which shows he has IgE for each of them. He is allergic to peanuts, but he can eat cashews and almonds. Those are false positives.    [20:56] When a scratch test is negative for immediate food allergy, it's a powerful predictive tool. But you may get false positives. How positive is it? There might be room for more discussion.   [21:10] There may be more hesitation for people who do large panels of food testing without any history of reacting to any foods.   [21:31] Some people have EoE triggered by milk or wheat but have negative skin tests. That doesn't mean they aren't triggered by these foods. The skin test is an IgE histamine mast cell mechanism, not for eosinophils, which are other immune cells.   [21:58] We go down these steps of thinking about diagnostic triggers and eventually treatment for those immediate symptoms mentioned for EoE.   [22:09] Dr. Accarino doesn't expect FIRE to be responsive to epinephrine. He doesn't have to stabilize the mast cells. It's a chronic disease that's flaring up. You treat it with a chronic type of treatment.   [24:10] Dr. Accarino says that for a doctor, immunology is rewarding, interesting, and complex, but it's intimidating until you get your foothold and see patients and clinical experiences.   [25:14] A lot of medical students and residents are a little fearful of immunology. They might not think about it too much. Dr. Accarino loves to talk about it and think about it. He can't think of anything more complex in terms of systems within our body.   [25:37] Ryan comments on his experiences with IgE-mediated food allergies, some environmental allergies that he has no idea how they work, and EoE, which he believes he has a good grasp on.   [25:55] Ryan imagines that having a physician with a good understanding of the immune system and also personal experience would be helpful for a patient with multiple allergic conditions.   [26:13] Dr. Accarino sees a large overlap of seasonal or year-round environmental allergies and EoE. There are some studies that show that endoscopies on patients with EoE may change at different times of the year if they have underlying seasonal allergies.   [26:33] Some people who have food allergies also have EoE or other eosinophilic disorders. Some discussions with them may be about blood tests that detect eosinophils in the bloodstream versus biopsies of the esophagus, stomach, or colon.   [27:15] It's thinking about what tests are available, what they tell us, and how to use them to predict the next steps, things like dietary changes or for immediate food allergy, considering challenges versus full avoidance. Each test has its pluses and minuses.   [27:35] People like a clear test, and they like an easy fix, but sometimes there's a lot of nuanced conversation of shared decision-making and trying things in a supervised setting.   [27:57] Holly speaks as a patient of the investigative testing Dr. Acarino is doing with her immune system trying to figure it out along with her MS and EoE.   [28:14] Dr. Accarino says the words immune system, immunity, and inflammation are used a lot in talking about foods. Dr. Accarino uses the framework of the immune system trying to help you.   [28:42] Sometimes, instead of making helpful antibodies to things like vaccines or viruses, that give you protection, the immune system makes antibodies that attack a certain organ or your joints.   [29:02] Dr. Accarino thinks of treatments that suppress the immune system in certain ways. Some treatments cool down the populations of many different immune cells. Oral steroids and prednisone are used for many conditions for autoimmune flares.    [29:29] Oral steroids, in the long term, may lead to weight gain, bone density changes, and diabetes. The big push for many diseases is toward non-steroidal biologics to target specific cells that cause disease.   [29:59] For Crohn's disease, a specific monoclonal antibody is used to target TNF-alpha molecules and blocks that inflammation pathway.   [30:14] For EoE, dupilumab, a specifically designed antibody, blocks a specific receptor in a specific pathway so the immune system doesn't have to be shut down and the patient doesn't have the side effects of steroids. It's a targeted therapy.   [30:32] What you see in commercials for injectable medications are large, designed antibodies that, if you took them in a pill form, your stomach acid would break down and digest. So they are injections and infusions that go directly into the bloodstream.   [31:22] Medications that end in -mab are monoclonal antibodies. They are very large molecules that would not be stable in stomach acid.   [32:09] Dr. Accarino talks of eosinophil normal function and aberrant function. IgE-mediated reactions are usually related to mast cells, a type of immune cell that shouldn't be in the bloodstream.   [32:54] Dr. Accarino can do a CBC with differential to see the number of white blood cells and the number of red blood cells. The differential of white blood cells will include neutrophils, lymphocytes, and eosinophils. It shouldn't show mast cells.   [33:19] If you have mast cells in your bloodstream, that's mastocytosis, a different problem. Mast cells live in your skin, in your gut, and around your blood vessels. They're full of granules like histamine and tryptase.   [33:38] Dr. Accarino explains how mast cells release their contents and how he would treat the resulting swelling or itch with an antihistamine or epinephrine. Epinephrine treats systemic reactions and stabilizes the mast cells.   [34:16] Mast cells have many receptors and may be triggered by many things other than IgE. This is a conversation Dr. Accarino has with patients who have chronic hives unrelated to any foods.   [34:29] Some people get hives from non-steroidal anti-inflammatory drugs NSAIDs. Some get hives from vancomycin. Some get hives when the temperature changes, from tight clothing, or from IV contrast. It's not an IgE-mediated mechanism, but it's still mast cells being degranulated.   [35:45] Dr. Accarino says people see hives and they think allergy. But, like EoE, it doesn't involve histamine. There can be hives that aren't related to allergies. This can be idiopathic urticaria or spontaneous urticaria.   [36:04] Sometimes, when switching from a day shift to a night shift, hormonal changes will trigger hives. Sometimes, the stress of having a family member in the hospital will cause hives. An accumulation of triggers can lead to mast cell degranulation.   [36:38] There are many ways that allergy can have different mechanisms and treatments, with different cells involved. There are different molecules that cause symptoms and manifestations.   [36:50] Navigating that and understanding what might be going on can give people a sense of reassurance. The biggest fear is a life-threatening allergic reaction. People will read about fatal anaphylaxis and wonder if it will happen to them with their condition.   [37:16] Sometimes, thinking of the cells involved and the pathways may give a level of reassurance that this may not be the same thing that they read about.   [37:28] Ryan thanks Dr. Accarino for joining us today.   [37:37] Dr. Accarino says it was nice to reflect on things and to go through different scenarios and experiences he has gone through. It was nice to have the opportunity to share them with Ryan, Holly, and all the listeners.   [37:57] For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit APFED.org and check out the links in the show notes.   [38:06] 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.   [38:15] 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.   [38:25] Ryan thanks Dr. Accarino for joining us today for this fun conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Dr. John Accarino, MD, Allergist and Immunologist at Massachusetts General Hospital and Mass General for Children Episode 034: Food-Induced Response and Eosinophilic Esophagitis   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “Allergy and immunology is a field where I can see pediatrics and adults. I was originally trained in pediatrics, but now I see all ages, from infants up until older adults.” — Dr. John Accarino   “Part of the conversation sometimes is trying not to overly bias myself, where I say, ‘Oh, this is my experience.' … Like many diseases, there's a large spectrum of presentations, … different symptoms that people have.” — Dr. John Accarino   “We don't think [Food-Induced Response in Eosinophilic Esophagitis is] histamine-mediated. We don't know exactly the mechanism, but it's in people with eosinophilic esophagitis. They feel differently, and there would be different specific food triggers. It took some time to figure out that was going on.” — Dr. John Accarino   “When a scratch test is negative for immediate food allergy, it's a very powerful predictive tool. But there are times that you may get false positives. How positive is it? There might be room for more discussion.” — Dr. John Accarino   “There are a lot of ways that allergy can have different mechanisms and different treatments, with different cells involved.” — Dr. John Accarino

In this episode, hosts Drs. Temara Hajjat and Jenn Lee talk to Drs. Glenn Furuta and Noam Zevit about the diagnosis and management of eosinophilic GI disorders (EGIDs) beyond eosinophilic esophagitis based on the new joint ESPGHAN/NASPGHAN recommendations.Learning Objectives:Discuss the diagnosis of non-EoE EGIDs.Explain the role of pathology in diagnosis of non-EoE EGIDs.Review management of non-EoE EGIDs.References:Joint ESPGHAN/NASPGHAN Guidelines on Childhood Eosinophilic GI Disorders Beyond Eosinophilic EsophagitisSupport 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.

Dr. Lisa Mathew interviews Dr. Vijay Yajnik, vice president and head of U.S. Medical, Gastroenterology, at Takeda about how the prevalence of eosinophilic esophagitis (EoE) is increasing, and evidence is growing that EoE is not a rare disease, but an underdiagnosed one. Approximately one in 2000 people in the U.S. live with EoE, and the incidence and prevalence of eosinophilic esophagitis have steadily increased over time. Join Dr. Mathew and Dr. Yajnik as they explore progress that has been made in diagnosing and treating EoE, and some recent studies that could influence patient care. Produced by Andrew Sousa and Hayden Margolis for Steadfast Collaborative, LLC Mixed and mastered by Hayden Margolis Gastro Broadcast, Episode 73, presented by TissueCypher from Castle Biosciences

In this episode, we're diving into the latest ACG Clinical Guideline for the Diagnosis and Management of Eosinophilic Esophagitis (EoE)—a major update that reflects the most current understanding of this chronic, immune-mediated disease. Joining us to break it all down are two of the experts who co-authored these guidelines: Dr. Amanda B. Muir, Pediatric Gastroenterologist at The Children's Hospital of Philadelphia Dr. Nirmala Gonsalves, Gastroenterologist at Northwestern University Feinberg School of Medicine What We Cover: What is EoE? Understanding symptoms and diagnosis Key updates in the latest guidelines and what they mean for patients Treatment options for both children and adults Whether you're living with EoE, caring for someone with it, or simply want a deeper understanding of this condition, this episode is for you! This episode is brought to you by Sanofi, and presented in collaboration with the American College of Gastroenterology's Patient Care Committee.

$60,000 dollars spent on medical to get to the root cause of inflammation, GI-IBS, Functional Dyspepsia, EOE, Gout, Arthritis, Fatty Liver, High Triglycerides, PTSD, Insomnia, and Dehydration. Have you heard of insulin resistance. It took me 10 years to stumble on how many veterans are at higher risks than Gen pop. What if we try baking soda water and cucumber. Having a higher than avg IQ I refuse to be at my own demise. Stress, anxiety is the root cause to sleep apnea, stress hormone elevation (cortisol), and dehydration. To fix this I rely on a concept of “Equilibrium,” give your body a chance to recover. I now eat smaller meal, avoid carbs and processed, sugary foods, and hydrate properly. Baking soda water and cucumber is my best start to end gouts. Glory be to the father, son, and Holy Spirit.

Description: 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 Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital. Dr. Shreffler is also an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. His research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy. This interview covers the results of a research paper on The Intersection of Food Allergy and Eosinophilic Esophagitis, co-authored by Dr. Shreffler. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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 the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host, Holly Knotowicz.   [1:15] Holly introduces today's topic, the intersection of food allergy and eosinophilic esophagitis.   [1:26] Holly introduces today's guest, Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital and an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative.   [1:43] Dr. Shreffler's research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy.   [1:54] Holly welcomes Dr. Shreffler to Real Talk. When Holly moved to Maine, she sent her patients to Dr. Shreffler at Mass General.   [2:25] Dr. Shreffler trained in New York on a Ph.D. track. He was interested in parasitic diseases and the Th2 immune response. Jane Curtis, a program director at Albert Einstein College of Medicine, encouraged him to consider MD/PhD programs. He did.   [3:31] Jane Curtis connected him to Hugh Sampson, who was working with others to help understand the clinical prevalence of food allergy and allergens.   [3:51] As a pediatric resident, Dr. Shreffler had seen the burden of allergic disease, caring for kids in the Bronx with asthma. His interest in Th2 immunity, the clear and compelling unmet clinical need, and the problem of food allergy guided his career.   [4:31] Dr. Shreffler's wife has food allergies and they were concerned for their children. Fortunately, neither of them developed food allergies.   [5:21] Dr. Shreffler thinks the food allergy field has a lot of people who gravitate toward it for personal reasons.   [5:53] Food allergy is an adverse response to food that is immune-mediated. There is still uncertainty about this but Dr. Shreffler believes that a large percentage of patients with EoE have some triggers that are food antigens.   [6:27] The broad definition of food allergy would include things like food protein-induced enterocolitis syndrome (FPIES).   [6:47] The way we use the term food allergy in the clinic, there are two forms: IgE-mediated allergies and non-IgE-mediated allergies, including EoE.   [7:40] Some patients have food-triggered eczema, some have FPIES.   [8:04] In 2024, Dr. Shreffler and Dr. Caitlin Burk released a paper that looked at the triggers of EoE, particularly the intersection of IgE-mediated food allergy and EoE.   [8:41] Dr. Caitlin Burk joined the group as they were publishing papers on IG food allergy and EoE. It was a moment where things unexpectedly came together.   [9:17] Adaptive immunity to food proteins comes from antibodies that cause milk allergy, egg allergy, peanut allergy, or multiple allergies. The IgE has specificity.   [9:40] T cells also are specific to proteins. They express a host of receptors that recognize almost anything the immune system might encounter. They have a long memory like B-cells.   [10:09] The overlap in these two threads of research was regarding a population of T cells that are important for mediating chronic inflammation at epithelial sites, including the gut.   [10:36] These T cells have been described in the airways in asthma, in the skin in eczema, and the GI tract. Researchers years ago had also described them as being associated with IgE food allergy. People with IgE food allergies avoid allergens.   [11:13] T cells, being associated with chronic allergic inflammation, now being associated with food allergies which are not having chronic exposures to the allergen, was interesting and surprising.   [11:30] Dr. Shreffler and his group found the T cell subset in patients who don't do well with Oral Immunotherapy (OIT) and patients who have EoE with immediate symptoms.   [12:01] Dr. Shreffler notes differences. There are immediate symptoms of IgE food allergy. There is a subset of patients with EoE who have immediate symptoms that are not fully understood. Maybe IgE plays a role there.   [12:28] There are different mechanisms for how symptoms are caused and so different ways of making a diagnosis. A food allergy with an IgE antibody can be measured through skin tests and blood tests. This can help identify which foods are the trigger.   [12:57] This common T cell subset that we see in EoE and food allergy, helps to explain why IgE alone is not always a very specific marker for identifying people who will have immediate reactions when they're exposed to the food.   [13:17] For patients who react at low levels, it's not just that they have more or better IgE but they also have an expansion of these T cells that are common between EoE and other chronic forms of allergy and IgE food allergy.   [13:41] There's a lot to learn that might be relevant for patients about this T cell subset.   [14:23] These T cells are a specific subset of the group of Th2 T cells, which are a subset of all CD4 T cells. Some CD4 T cells are important for responding to viruses and tumors. Others are important for responding to outside allergens.   [15:01] In an allergy or a parasite infection, Th2 T cells are important. There is a subset of T cells that is driven by repetitive and chronic exposure to the triggering protein, antigen, or allergen.   [15:47] Most antigens are proteins that trigger an immune response. An antigen that elicits an allergic response is an allergen. [16:30] A food trigger is a protein antigen that is an allergen. In IgE, food allergies, milk, and eggs are prevalent triggers early in life. For reasons not well understood, a lot of people outgrow them. In older patients, peanut and tree nut allergies are prevalent.   [17:01] In EoE, milk is one of the most common dietary triggers into adulthood. Some patients with IgE allergy to milk can tolerate it if it's well cooked. Patients with EoE are less likely to be able to get away with regular and ongoing exposure to milk protein.   [17:54] Milk, eggs, and nuts are common triggers in both conditions. There can also be rare food allergy triggers. That's part of the early evidence that the adaptive immune response was likely to be involved. It can be so specific for some people to rare things.   [18:20] Hallmarks of something being immune-mediated are that it is reproducibly demonstrable as a trigger. It's going to be long-lived. It's going to be generally relatively small amounts. The immune system is good at detecting small exposures.   [19:07] EoE is tricky because there's not that clear and easy temporal association between an offending allergen exposure for most people and their symptoms. People don't associate the symptoms with the triggers.   [20:14] A history of having blood in the stools can be milk-allergen-driven and was associated with a diagnosis of EoE in those kids when they're older.   [20:26] There are a lot of commonalities in the allergens but it's not always obvious clinically.   [22:40] A challenge in diagnosing EoE is that providers have to be on guard against their biases. They have to give a patient good advice. In EoE there is no test to identify triggers, except rigorous introduction, elimination, reintroduction, and endoscopies.   [24:18] For some of Dr, Shreffler's patients, it becomes less important to know their dietary triggers. They gravitate toward an approved form of treatment that may, if successful, allow them to have a more normal diet because of effective medication.   [24:50] Dr. Shreffler thinks there are other triggers, including pollens. There is evidence of seasonality of active EoE in patients shown to have allergic sensitization to pollens. That's indirect evidence. If the body is making IgE, it's likely making other responses.   [25:32] There are questions about how large the population of patients is who have EoE that may be more intrinsically than extrinsically driven because of genetic variations.   [25:54] Dr. Shreffler believes that EoE in some patients is allergen-driven and in some patients EoE is food-driven. Food is a trigger for the majority of pediatric patients and a large percentage of adult patients but not necessarily the exclusive trigger.   [27:04] If a patient is motivated to learn what dietary triggers may be at play, Dr. Shreffler often makes assessments outside of pollen season for allergens to which the patient has demonstrated positivity.   [28:09] Looking at the epidemiology, both EoE and food allergy are atopic disorders. You see an increased prevalence of asthma, hay fever, eczema, and even allergic proctocolitis in infancy. You see an enrichment of one disorder to another.   [28:29] The overlap of food allergy to EoE is stronger than you might expect. About 30 to 40% of patients with EoE will also have IgE food allergy. A higher rate will have IgE positivity, whether or not that food is a trigger of immediate symptoms.   [28:48] Patients with food allergies are about four times more likely to have EoE than the general population. That's a stronger association than the risk of eczema or other atopic conditions to EoE.   [30:09] There are differences between IgE food allergy and EoE. The presence of IgE gives a useful tool for identifying the food trigger in food allergy, but not in EoE. Identifying rare triggers in EoE patients is done by clinical observation.   [31:46] Epinephrine and antihistamines are not useful in treating EoE. Blocking IgE with Omalizumab has not been effective in trials in treating EoE. PPIs, topical steroids, and dupilumab are helpful for many EoE patients.   [32:38] Dupilumab has been evaluated a bit in food allergy in combination with OIT, and there was no statistically significant benefit from dupilumab in food allergy.   [33:25] A group in Pennsylvania has been evaluating epicutaneous immunotherapy as a modality to treat EoE. It's also being evaluated for IgE food allergy. Dr. Shreffler thinks it's something to keep an eye on.   [33:40] The oral route for immunotherapy can drive EoE for patients. As they become less sensitive from an immediate reactivity viewpoint, a significant percentage of patients develop GI symptoms. This has also been observed with sublingual therapy.   [34:14] Iatrogenic EoE, caused by the treatment, may resolve on the cessation of the immunotherapy treatment.   [36:25] Dr. Shreffler says in some cases, the shared decision is a decision where he has a strong evidence-based opinion. In some cases, there's a lot more room for a range of clinical decisions that could be equally supported by what we know right now.   [36:57] We've said that EoE is a contraindication for OIT. There is a shift happening. Dr. Shreffler sits with families and has a conversation about restricting diet or trying chronic therapy and keeping an ad-lib diet.   [37:38] What about doing the same thing by treating the immediate-type food allergy with chronic allergen exposure and then ameliorating the effects of EoE if it emerges, with another therapy? A hundred providers would have a diversity of responses.   [38:19] When there is a history of EoE in a family, Dr. Shreffler advocates for getting a baseline scope. It becomes an important “ground zero.”   [38:28] The goal is to have less invasive ways to monitor these conditions.   [39:32] Chronic inflammation, which is the hallmark of EoE, is well-targeted by therapies like PPIs and steroids. Steroids don't help with IgE-related food allergies. They're not effective at blocking the IgE-driven immediate response.   [41:13] Until recently, IgE food allergy has only been managed with avoidance. We have some other tools now. Xolair is not effective in EoE but is effective in two-thirds to three-quarters of patients with immediate-type food allergies for preventing anaphylaxis.   [41:45] Dr. Shreffler refers to an upcoming study on the effectiveness of Xolair in treating people with food allergies. Those who were able to tolerate a minimum amount were allowed to begin consuming allergen. We'll get insight into how those patients did.   [43:08] Food-induced immediate response of the esophagus (FIRE) is immediate discomfort with exposure to some allergens. Dr. Shreffler explains it. Data supports that these patients are experiencing an IgE-mediated but local response to those triggers.   [44:59] If FIRE is IgE-mediated, it may be that Xolair would help suppress it in these patients. It's worth looking at Xolair for this subset of EoE patients.   [45:20] Ryan invites any listeners who want to learn more about FIRE to check out episode #34 with Dr. Nirmala Gonsalvez.   [45:37] In the paper, Dr. Shreffler wrote about what he hopes will be the practical usefulness of the finding, the intersection between IgE food allergy and EoE.   [45:56] A subset of Th2 T cells express a protein called GPR15. It appears to be a marker for the subset of cells that are playing a role in the EoE.   [46:36] Caitlin Burk's work now is looking at their activation status in active disease and post-diet elimination and remission. She is developing a data set that is leading us toward the possibility of focusing on that cell subset and techniques to adopt in clinics.   [47:12] She is also working out more advanced techniques to look at the receptors. Dr. David Hill at CHOP is working on similar research. This research has the potential to lead to the development of better tests for EoE.   [47:44] Holly tells Dr. Shreffler this has been such an informative episode with so many tidbits of things to help patients advocate for themselves. Holly thanks him for sharing all of that.   [48:12] Dr. Shreffler is trying to see what can be utilized from their research to make non-invasive tests to identify food allergen triggers for patients so they don't have to go through so many endoscopies. He sees it as a huge unmet need.   [48:31] Ryan thanks Dr. Shreffler for joining us. For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit APFED.org and check out the links in the show notes.   [48:41] 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.   [48:50] 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.   [49:00] Ryan thanks Dr. Shreffler for joining us today for this interesting conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Dr. Wayne Shreffler, MD, Ph.D., Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital “Triggers for eosinophilic esophagitis (EoE): The intersection of food allergy and EoE” Dr. Caitlin Burk Dr. David A. Hill   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “This fascinating problem of food allergy: why does the immune system do that for some people — recognize what should be nutritive and innocuous sources of energy as an immunological trigger? ” — Dr. Wayne Shreffler   “A food allergy; because there is this IgE antibody, we can do skin tests. We can measure that in the blood. It's a useful marker for helping to identify which foods are the trigger.” — Dr. Wayne Shreffler   “EoE is tricky because there's not that clear and easy temporal association between an offending allergen exposure for most people and their symptoms. People don't associate the symptoms with the triggers.” — Dr. Wayne Shreffler   “Everything is shared decision-making. In some cases, it's a shared decision where I have a strong evidence-based opinion. In some cases, there's a lot more room for a range of clinical decisions that could be equally justified.” — Dr. Wayne Shreffler   “Steroids don't help with IgE-related food allergy. They're not effective at blocking that IgE-driven immediate response.” — Dr. Wayne Shreffler   “I'm trying to see what we can utilize from our research to make non-invasive tests to identify food allergen triggers for patients so they don't have to go through so many endoscopies. I think that's a huge unmet need.” — Dr. Wayne Shreffler  

Why do conditions like asthma, nasal polyps, or eczema become more severe when they coexist? Kortney and Dr. Payel Gupta are joined by Dr. Michael Blaiss to explore the common thread linking multiple allergic and inflammatory diseases: Type 2 Inflammation. If you've ever wondered why certain conditions often appear together, this deep dive will help you connect the dots. Type 2 Inflammation is a hot topic in immunology because it's the engine that drives many allergic and inflammatory diseases. It's also the key to modern treatment strategies, including targeted biologic therapies. Dr. Blaiss explains how clinicians recognize multiple Type 2-driven conditions in the same patient, why it is important to know the connection between multiple conditions and Type 2 inflammation, and the big-picture benefits of treating inflammation aggressively to prevent complications. What We Cover in our Episode about The Diseases Related to Type 2 Inflammation Conditions Related to Type 2 Inflammation: Explore how chronic rhinosinusitis with nasal polyps (CRSwNP), rhinitis, asthma, atopic dermatitis (eczema), prurigo nodularis, eosinophilic esophagitis (EoE), and food allergies can all share a common inflammatory pathway. The Likelihood of Having Multiple Type 2 Conditions: How often do patients have more than one condition related to Type 2 Inflammation, and why is recognizing overlap a potential game-changer for diagnosis and treatment? Treating the Root Inflammation vs. Individual Symptoms: Discover how clinicians decide whether to address each condition separately or tackle the underlying Type 2 inflammatory process affecting them all. Markers & Personalized Medicine: Dr. Blaiss discusses whether potential tests, such as eosinophil counts or IgE levels, can confirm Type 2 inflammation. He also explains how knowing you have Type 2 Inflammation can help guide targeted therapy. Prevention & Aggressive Intervention: Understand why it's crucial to treat inflammation early to reduce the risk of developing multiple Type 2 conditions and how this proactive approach benefits long-term health. Want to know more? Type 2 Inflammation Overview – Explains the role of Type 2 inflammation in conditions like asthma and nasal polyps. This podcast is for informational purposes only and does not substitute for professional medical advice. If you have any medical concerns, always consult with your healthcare provider. Produced in partnership with The Allergy & Asthma Network. Thanks to Sanofi and Regeneron for sponsoring today's episode. While they support the show, all opinions are our own, and sponsorship doesn't influence our content or editorial decisions. Any mention of brands is for informational purposes and not an endorsement.

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/courses/on-the-lookout-for-eoe-9990SummaryIn this CME/CE podcast, two gastroenterologists discuss the increasing prevalence of eosinophilic esophagitis (EoE), our evolving understanding of its pathophysiology, and its varied clinical presentation. Drs. Brooks Cash and Paul Feuerstadt also review the need for early identification of the condition, and discuss the latest American College of Gastroenterology guideline for diagnosis.Learning ObjectiveAt the conclusion of this activity, participants should be better able to:Identify common clinical presentations and diagnostic challenges to facilitate early diagnosis of EoE in diverse patient populationsThis activity is accredited for CME/CE CreditThe 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 0.50 AMA PRA Category 1 Credits™. 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 0.50 contact hours (which includes 0 hours of pharmacology).For additional information about the accreditation of this program, please contact NACE at info@naceonline.com.Summary of Individual DisclosuresPlease review faculty and planner disclosures here.Disclosure of Commercial SupportThis activity is supported by an educational grant from Takeda Pharmaceuticals U.S.A., Inc.Send us a text about this episode. Please visit http://naceonline.com to engage in more live and on demand CME/CE content.

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/courses/management-approaches-for-eoe-9991SummaryThe American College of Gastroenterology has published the first new guidelines for the treatment of eosinophilic esophagitis (EoE) since 2013. In this CME/CE podcast, Drs. Paul Feuerstadt and Brooks Cash discuss these latest recommendations, reviewing the role of proton pump inhibitors, topical steroids, diet elimination, a biologic, and esophageal dilation in the management of this increasingly recognized condition.Learning ObjectivesAt the conclusion of this activity, participants should be better able to:Assess the efficacy and safety profile of approved agents for EoE, with a focus on swallowed corticosteroids, in the management of EoEApply evidence-based guidelines to optimize treatment outcomes and improve the quality of life for patients with EoEThis activity is accredited for CME/CE CreditThe 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 0.50 AMA PRA Category 1 Credits™. 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 0.50 contact hours (which includes 0.25 hours of pharmacology).For additional information about the accreditation of this program, please contact NACE at info@naceonline.com.Summary of Individual DisclosuresPlease review faculty and planner disclosures here.Disclosure of Commercial SupportThis activity is supported by an educational grant from Takeda Pharmaceuticals U.S.A., Inc.Send us a text about this episode. Please visit http://naceonline.com to engage in more live and on demand CME/CE content.

What do asthma, eczema, EoE, and nasal polyps have in common? They all stem from Type 2 inflammation! Type 2 inflammation is a major cause of many allergic and inflammatory conditions, yet it remains widely misunderstood. In this first episode of our four-part series on Type 2 Inflammation, we discuss the basics, unpack its impact on the immune system, explain how it contributes to chronic inflammation in the body, and explain why it matters for treatment and management. What we cover in our episode about Type 2 Inflammation Understanding Inflammation: Inflammation is your body's natural defence mechanism, but it can become problematic when it turns chronic. Normal vs. Chronic Inflammation: Not all inflammation is bad! Learn the difference between the body's normal immune response and long-term chronic inflammation. What Sets Type 2 Inflammation Apart? Unlike other immune responses, Type 2 inflammation involves a specific pathway. Key Players in Type 2 Inflammation: Th2 cells, cytokines (IL-4, IL-5, IL-13), IgE antibodies, and eosinophils. Measuring Type 2 Inflammation: How blood tests can help determine if Type 2 inflammation is contributing to your symptoms. Want to know more? Type 2 Inflammation Overview – Explains the role of Type 2 inflammation in conditions like asthma and nasal polyps. This podcast is for informational purposes only and does not substitute for professional medical advice. If you have any medical concerns, always consult with your healthcare provider. Produced in partnership with The Allergy & Asthma Network. Thanks to Sanofi for sponsoring today's episode. While they support the show, all opinions are our own, and sponsorship doesn't influence our content or editorial decisions. Any mention of brands is for informational purposes and not an endorsement.  

Check out EOE merchandise at https://edgeoveredge.printful.me/

Welcome to The Veterans Disability Nexus, where we provide unique insights and expertise on medical evidence related to VA-rated disabilities.Leah Bucholz, a US Army Veteran, Physician Assistant, & former Compensation & Pension Examiner shares her knowledge related to Independent Medical Opinions often referred to as “Nexus Letters” in support of your pursuit of VA Disability every Wednesday at 7 AM. Leah discusses eosinophilic esophagitis (EoE) and its potential connection to VA disability claims, particularly for Gulf War veterans. She explains EoE as a chronic immune system disease where eosinophils, a type of white blood cell, accumulate in the esophagus, often due to allergens, causing inflammation and damage. Leah highlights the complexity of linking EoE to Gulf War exposures, emphasizing the role of allergens and immune responses potentially triggered by environmental factors like burn pits. She reviews relevant medical literature and encourages veterans with EoE to explore service connection possibilities, especially if the condition developed during or after service.

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 Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children's Hospital Medical Center. Dr. Collins was a member of the task force that produced the Guidelines on Childhood EGIDs Beyond EoE. In this interview, Dr. Collins discusses the guidelines and how they were created and shares some of the results, including an algorithm for diagnosing non-EoE EGIDs. She shares why she specialized in EGIDs and what her hopes are for the future development of the guidelines. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.   [1:13] Holly introduces today's topic, guidelines for childhood eosinophilic gastrointestinal disorders (EGIDs) beyond eosinophilic esophagitis (EoE).   [1:27] Holly introduces today's guest, Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children's Hospital Medical Center.   [1:38] Dr. Collins specializes in the pathology of pediatric gastrointestinal disease, especially EGIDs, and is a central pathology reviewer for the Consortium of Eosinophilic Gastrointestinal Researchers (CEGIR), as well as a member of APFED's Health Sciences Advisory Council.   [2:11] As a pathologist, Dr. Collins examines biopsies microscopically. For EGIDs, she determines the peak count of eosinophils per high-power field, or reports the numbers of eosinophils in multiple high-power fields, and analyzes the tissue for additional abnormalities.   [2:33] Dr. Collins then issues a report that becomes part of the patient's medical record and is provided to the patient's doctor.   [2:41] The biopsies Dr. Collins examines may be the first biopsies for a diagnosis, or follow-up biopsies to determine response to therapy, or as part of ongoing monitoring to determine if inflammation has returned even if the patient has no symptoms.   [3:07] Dr. Collins was inspired to specialize in EGIDs after speaking with patients with EGIDs. She used to give tours of the pathology lab at Cincinnati Children's Hospital. She met affected children and their caregivers. Their courage and gratitude moved her.   [3:43] Ryan mentions the wonderful patients and their families in the APFED community. Holly says that as a patient, it's fascinating to meet a pathologist. Pathologists are generally behind the scenes.   [4:42] Dr. Collins specializes in GI pathology, including eosinophilic-related conditions in the GI tract. EoE, eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis.   [5:16] In January 2024, “Guidelines on Childhood EGIDs Beyond EoE” were published in the Journal of Pediatric Gastroenterology and Nutrition. Dr. Collins served on the task force that prepared the guidelines.   [5:35] Non-EoE EGIDs affect all sites of the GI tract except the esophagus. All sites of the GI tract except the esophagus normally have eosinophils in the mucosa, which complicates the diagnosis.   [6:03] Like EoE, the diagnosis of non-EoE EGIDs is made after known causes of tissue eosinophilia are excluded.   [6:28] Consensus guidelines help bring attention to best practices and encourage uniformity of practices.    [6:50] This is especially important for rare diseases and for centers that see fewer patients with rare diseases than the more specialized centers. Guidelines based on the best information available help these centers.   [8:03] The best distribution of guidelines is to publish them in the medical literature and sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists. Guidelines may be presented at national meetings to increase awareness.   [8:36] Several specialties are involved in the care of patients who have EGIDs. If patients or caregivers learn of published guidelines, they can also inform their providers.   [9:23] Insurance is a big issue for so many patients. Getting coverage for both diagnostic and treatment options can be complex.    [9:50] The guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition. However, if the sequence suggested in the guidelines is not followed, there may be difficulty getting coverage in the U.S.   [11:11] Patients can advocate for themselves with insurance companies by explaining that the order of testing is not important but getting the recommended tests done is important.    [11:55] The greatest challenge the task force faced was the lack of large clinical studies and quality research reports. We're making progress in this field but we're at the beginning. Dr. Collins is hopeful that progress will be made in the next two to three years.   [12:24] When there were knowledge gaps, the task force filled them in with their published research and their own experiences. It's always reassuring to have a well-conducted clinical study that verifies that your thinking is correct.   [13:29] How long did it take the task force to create these guidelines? Longer than they wanted it to take! The years they put into composing these guidelines were greater due to the interruption caused by the [COVID] pandemic. They all felt good when they finished.   [14:18] The guidelines were written by 26 authors from five continents. These are international guidelines.   [14:44] Dr. Collins highlights the pathology. The guidelines state that non-EoE EGIDs should be considered clinicopathologic diagnoses, as EoE is, meaning that biopsies from the affected site in the bowel must show excess eosinophils.   [15:10] The guidelines, for the first time, recommend threshold eosinophil values for a diagnosis in the parts of the GI tract other than the esophagus. For a diagnosis of EoE, a threshold value of greater than or equal to 15 eosinophils per high-power field.    [15:36] The guidelines now recommend that for a diagnosis of eosinophilic gastritis, a threshold value of greater than or equal to 30 eosinophils per high-power field is present.   [15:48] For a diagnosis of eosinophilic duodenitis, a threshold value of greater than or equal to 50 eosinophils per high-power field. For a diagnosis of eosinophilic ileitis, a threshold value of greater than or equal to 60 eosinophils per high-power field.   [16:03] For a diagnosis of eosinophilic colitis in the right colon, a threshold value of greater than or equal to 100 eosinophils per high-power field. For a diagnosis of eosinophilic colitis in the transverse and descending colon, a threshold value of greater than or equal to 80 eosinophils per high-power field. [16:12] For a diagnosis in the rectosigmoid, a threshold of greater than or equal to 60 eosinophils per high-power field.   [16:18] These numbers may change over time. One or more thresholds will likely change as we gain more experience with these diseases. The pattern won't change.   [16:29] Several studies have shown that the normal pattern of eosinophil presence in the mucosa in the GI tract is that the number increases from the stomach to the right colon and then decreases throughout the colon to the rectosigmoid.   [17:40] When giving tours of the hospital, Dr. Collins found that people understood better when they knew the numbers and could see the slides of their biopsies.   [18:48] Dr. Collins found literature reviews that suggested that the GI mucosa was often normal in non-EoE EGIDs. She believes that in the next few years, as we publish more and gain more experience, we will realize that is not the case.   [19:14] There is already a method for scoring the mucosa in the stomach in eosinophilic gastritis (EoG) and there are abnormalities found in a majority of patients. We have to work on the rest of the GI tract.   [19:35] Dr. Collins was surprised that there's not very good information about the use of proton pump inhibitors (PPIs) in eosinophilic gastritis and eosinophilic duodenitis. There haven't been studies about that. We need to work on that, too.   [20:47] Dr. Collins isn't sure we can recognize misconceptions about non-EoE EGIDs at this point. It might be premature to label any belief as a misconception. We thought that eosinophils were responsible for all symptoms in EoE, but we know now that is not true.   [21:10] Dr. Collins thinks we need to wait a bit before we decide that we know for sure all about non-EoE EGIDs. Ryan is excited to learn what the research will show us next.   [21:44] Holly loved learning about the algorithm in the guidelines.   [22:01] Dr. Collins says this is the first effort to create uniformity in the way in which non-EoE EGIDs are diagnosed. This algorithm can change over time. It provides signposts for the diagnosis, based on the information we have currently.   [22:20] The diagnosis of non-EoE EGIDs should rest on symptoms and the detection of dense eosinophilic inflammation in the mucosa by biopsy and the absence of evidence of other diseases, such as parasitic and other diseases, that might cause dense eosinophilic inflammation in the GI tract.   [22:46] The algorithm suggests that the particular anatomic site or sites in the GI tract responsible for the symptoms should be determined, for example, eosinophilic gastritis or eosinophilic colitis.   [23:03] The algorithm also suggests that the involved part of the wall in the involved anatomic site should be identified.   [23:13] For example, if the symptoms are suggestive of mucosal disease, without deeper mural or wall involvement, the clinical investigation can proceed directly to endoscopy.   [23:26] However, if symptoms suggest partial or complete bowel obstruction, which is typical of deep muscular involvement, then imaging studies should be considered before proceeding to endoscopy, to confirm or refute that there is a bowel obstruction.   [23:47] If the obstruction is identified, a full-thickness biopsy of the bowel wall may be indicated, possibly requiring a non-endoscopic surgical procedure. If obstruction is not identified, then the investigation can proceed to endoscopy.   [24:05] If there is abdominal distension, suggestive of fluid accumulation, consideration should be given to sampling the fluid, using a needle to pull some fluid out to determine if there are numerous eosinophils in the fluid that would indicate eosinophilic ascites, with the eosinophilic inflammation involving the outer lining of the bowel wall.   [24:41] The signposts are a little involved. They are a reasonable way to approach working up a diagnosis of non-EoE EGIDs.   [25:34] How is EoE ruled out before using this algorithm? It's sometimes difficult to distinguish symptoms that are relevant only to the esophagus and symptoms that are relevant only to the stomach.   [26:26] Someone with upper tract symptoms only will have an upper tract endoscopy, especially if that person has mucosal symptoms that seem to be relevant to the mucosa only. The best thing is to take biopsies of the esophagus, stomach, and duodenum to be sure where the eosinophil infiltrate is.   [27:06] If the person has lower tract involvement only, such as diarrhea and lower abdominal pain, and no upper tract symptoms, a transnasal endoscopy could be used to determine if there is EoE in addition to the non-EoE EGIDs. Each case is different.   [29:12] As a pathologist, Dr. Collins has seen the guidelines for treating eosinophilic conditions evolve. They've become more specific as our knowledge of the data concerning the disease has increased. PPIs are now considered a treatment for EoE.   [30:12] Dr. Collins says we need clinical trials testing therapies in children and adults with non-EoE EGIDs. We need to determine which patients have single-site disease and will only have single-site disease, and which patients may develop multi-site EGIDs.   [30:42] Those aspects will be addressed in the next version of CEGIR, if it's funded.   [30:49] Ryan tells Dr. Collins it's been fantastic having her on the show. This has been a good overview of non-EoE EGIDs and the new methods clinicians are looking into to help people get a better diagnosis and treatment.   [31:11] Dr. Collins says we don't have validated instruments yet to measure symptoms, evaluate the mucosa, and evaluate the biopsies under the microscopes. We need to create those validated tools to help us determine the significance of our findings.   [31:31] Some data strongly suggest that eosinophilic colitis is different from the rest of the EGIDs; certainly from the upper tract EGIDs. We need to move more deeply into what eosinophilic colitis actually is.   [32:05] For our listeners, feel free to check out the article we've been mentioning in the show notes. We'll include a link to it.   [32:11] For those of you who would like to learn more about eosinophilic disorders, please visit APFED.org and check out the links in the show notes.   [32:18] 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.   [32:27] 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.   [32:36] Ryan thanks Dr. Collins for joining us today for this great conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Margaret H. Collins, M.D., A.G.A.F., Director, Gastrointestinal Pathology Division of Pathology ML 1035 Cincinnati Children's Hospital Medical Center “Guidelines on Childhood EGIDs Beyond EoE,” Journal of Pediatric Gastroenterology and Nutrition.   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “The best distribution of guidelines is accomplished by publishing them in the medical literature; sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists.” — Dr. Margaret H. Collins    “Guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition.” — Dr. Margaret H. Collins    “It's always reassuring to have a well-conducted clinical study that verifies that your thinking is correct.” — Dr. Margaret H. Collins    “This is the first effort to create uniformity in the way in which non-EoE EGIDs are diagnosed. This algorithm can change over time. It provides signposts for the diagnosis, based on the information we have currently.” — Dr. Margaret H. Collins   “We don't have validated instruments yet to measure symptoms [for non-EoE EGIDs], evaluate the mucosa, and evaluate the biopsies under the microscopes. We need to create those validated tools to help us determine the significance of our findings.” — Dr. Margaret H. Collins  

In this episode, the Turd Nerds discuss Eosinophilic Esophagitis (EOE), exploring symptoms, diagnostic testing, and treatment approaches. The conversation delves into dietary interventions, the role of histamine in gastrointestinal health, and the importance of comprehensive diagnosis in managing EOE. The episode highlights the evolving understanding of EOE and the potential for integrative treatment options.

In this episode, the hosts discuss Eosinophilic Esophagitis (EOE), a condition that has gained recognition in recent years. They explore its symptoms, including dysphagia and food impaction, and the importance of accurate diagnosis through endoscopy and biopsies. The conversation delves into risk factors, potential triggers such as food allergies, and the role of diet in managing EOE. Treatment options are discussed, including pharmaceutical interventions like Budesonide and PPIs, as well as dietary management strategies such as elimination diets. The hosts also touch on herbal remedies and the importance of monitoring for fungal overgrowth during treatment.

Are eczema, asthma, and Eosinophilic Esophagitis (EoE) connected? Parents often notice their children experiencing symptoms of more than one condition, but what's the link? In this episode, pediatric gastroenterologist Dr. Sophia Patel from the Cleveland Clinic explains the relationship between these conditions, how to recognize the symptoms of EoE, and why early diagnosis matters. Learn what signs to watch for, how doctors approach diagnosis and treatment, and what parents can do to support their child's health. Discover the latest medical insights into these overlapping conditions and actionable tips for managing them effectively. This episode is brought to you by Sanofi Regeneron.  

Description: 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 Jason Ingraham, an adult living with eosinophilic fasciitis (EF), and Dr. Catherine Sims, a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans' Affairs Hospital. They discuss Jason's experiences living with EF and Dr. Sims's experience treating EF. They share Jason's journey to diagnosis and the importance of working with a group of specialists. They share tips on medication and physical therapy, how to communicate with your medical team, and manage your activity and mindset. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.   [1:14] Holly introduces today's topic, eosinophilic fasciitis, with guests, Jason Ingraham and Dr. Catherine Sims.   [1:25] Jason is an adult living with eosinophilic fasciitis (EF). Dr. Sims is a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans' Affairs Hospital.   [1:52] Dr. Sims explains what EF is. Patients may present with symptoms of large plaques on their skin, edema of arms and legs, Raynaud's Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do.   [2:42] EF, as with most eosinophilic disorders, doesn't follow the textbook. Some people will present with one symptom and some with multiple symptoms. There is a disconnect between how we diagnose conditions like EF and how patients present.   [3:01] There are major and minor criteria for the diagnosis. As in Jason's case, it takes time for the symptoms to present. Things develop over time. It took multiple specialists to diagnose Jason.   [3:38] Eosinophilic conditions are incredibly different from each other. When Dr. Sims sees a patient with high eosinophils, she thinks of three major buckets: infection, autoimmune diseases, and cancer.   [4:12] Patients will often see many different specialists. In Jason's case, they had done a skin biopsy that wasn't as helpful as they hoped. That led him to get a deep muscle biopsy to collect the lining of the muscle.   [4:47] Fasciitis is the inflammation of the muscle lining or fascia. A sample of the fascia can demonstrate under the microscope if there is a thickening, swelling, or inflammation of the lining of the muscle.   [5:24] Dr. Sims as a rheumatologist treats a number of rare diseases. Eosinophilic fasciitis is an ultra-rare disease.    [5:43] Jason had a local primary care doctor and a rheumatologist who both did a really good job and referred him to Dr. Sims. She had the benefit of their hard work to guide her next steps. Because EF is so rare, she has pitched Jason's case twice in rheumatology grand rounds sessions.   [6:18] During one of these sessions, Dr. Sims was advised to get the fascial biopsy that ultimately led to the diagnosis. She benefited from the intelligence and input of dozens of doctors.   [6:59] In the Fall of 2022, while hiking on vacation with his wife, Jason was extremely fatigued, and his forearms and lower legs swelled. His socks left deep impressions. It was difficult to reach his feet to put socks on. He spent a lot of time uncharacteristically resting.   [8:09] Jason's primary care doctor ran lots of blood tests. He thought it might be a tick bite. Jason started seeing specialists, having tests and hospital visits.   [8:57] Jason worked with a rheumatologist in Wilmington, an infectious disease doctor, and a hematologist/oncologist who reached out to a Duke expert. He also saw a pulmonologist and a dermatologist. He got the referral to Dr. Sims for March of 2023.   [9:57] The first diagnosis Jason received was after his first hospital stay in January of 2023, when he had bone marrow biopsies, CT scans, ultrasound, and other tests. He was deemed to have idiopathic hypereosinophilic syndrome (IHES).   [10:30] It was only a few weeks before his local rheumatologist said his panels were back and one tipped it from an IHES diagnosis to eosinophilic granulomatosis with polyangiitis (EGPA). He joined the Vasculitis Foundation and researched EGPA.   [11:03] Dr. Sims told Jason that EGPA was a working diagnosis but he didn't check all the boxes. There was the underlying thought that maybe it was something else. He had a second flare when he came off of prednisone in June of 2023.   [11:48] Dr. Sims scheduled Jason for a muscle biopsy while he was off steroids. That's how he got the diagnosis of eosinophilic fasciitis (EF). Jason says the disorder is hard for him to pronounce and he can barely spell the words.   [12:52] Jason's wife Michelle encouraged Jason to track his symptoms and medications and keep track of data. Going from specialist to specialist, the first thing he did was give the history.   [13:31] Jason found it helpful to create a spreadsheet of data with blood test results, meds, how he was feeling each day, his weight, and even notes about when he had difficulty putting his socks on. Jason is an advocate of owning your continuity of care as you see different doctors.   [14:42] Jason says the doctors at Duke talk very well between themselves.   [14:49] Jason likes to look back at that spreadsheet and see how far he's come, looking at the dosage he was on during and after flares and the dosage he's on now, or zero, on some of the medications. That's a little bit of a victory.   [15:16] Holly works at a private hospital without Epic or CareEverywhere so she gives physical notes to her patients to give to their doctors. She comments that a great PCP, like the one Jason had, can make all the difference in the world.   [16:18] Jason's PCP, Dr. Cosgrove, referred Jason to Duke for a second opinion. That was where he met Dr. Sims. He's glad to have both Dr. Sims and his PCP accessible.   [17:35] Jason says the number of questions you have with this type of thing is immense. When you look up EF, you find very little and the literature isn't easily digestible by patients. Being able to reach out to your doctors for a quick question is super helpful. [17:56] Jason has been able to do telehealth follow-ups and not always have to travel or take off work, which has been extremely helpful. He has been at Duke a good handful of times for various things but remote follow-ups are helpful.   [18:52] Dr. Sims says people just don't know about EF as it is an ultra-rare diagnosis. Even physicians don't understand what causes it. It's lumped in with all other eosinophilic conditions but these disorders don't all present the same way.   [19:19] EoE doesn't look like EF, even though they're both driven by the same immune cells. Dr. Sims says the first need is educating providers and patients on what the diagnosis is; awareness in general when a patient is having this swelling of extremities.   [19:44] Dr. Sims says at his baseline, Jason is very active with multi-mile hikes. When Dr. Sims met him, he was off from the baseline of what he was able to do. Being aware of your baseline and changes from that is very informative for doctors.   [20:07] Dr. Sims talks about the patient being a liaison between multiple specialists. Bringing data to your subspecialist always helps facilitate care and come up with a bigger picture of what's happening.   [20:23] Jason first went to Dr. Sims with the diagnosis of EGPA. She said, let's treat the EGPA and see what happens but they kept an open mind. With ultra-rare diseases, sometimes it's difficult for patients not to have a label for their condition.   [20:45] Dr. Sims explains to her patients that sometimes we live in the discomfort of not having a label. She keeps an open mind and doesn't limit herself to just one diagnosis. She seeks feedback from providers who have seen this before and know what works.   [21:07] Just as Jason described, you will go through multiple diagnoses. Is this cancer? Is it a parasitic infection? Where did you travel? You will see many subspecialists. It's extremely anxiety-provoking.   [21:31] When Dr. Sims did her grand rounds, she gave a third of the presentation, and the other two thirds were presented by an infectious disease doctor and a hematologist. In these cases, you need more than one subspecialist to complete the workup.   [22:10] Dr. Sims says there are a lot of misconceptions that the patient will get the diagnosis right away and the right therapy and get better. There are multiple therapies, not just medications. There are lifestyle and work modifications; it's a gradual process.   [22:22] One of Dr. Sims's goals for Jason and Michelle is to get back to doing the things that they enjoy, tennis and hiking. That's a measurement of the quality of life that a patient has.   [22:34] Talking to your doctors about how you're feeling and how you're functioning is huge. It may be that this is your new normal, but it may also be that we can make adjustments to maximize your quality of life.   [23:00] There are misconceptions about the journey of diagnosis and treatment. Have a close relationship with your subspecialist. PCPs have a high burden of expectations. As a rheumatologist who treats rare diseases, it's helpful to take on a part of that burden.   [22:31] If you don't have good communication with your providers and they aren't listening to you, you can always go get another opinion. The provider relationship is life-long.   [23:43] It's important for your provider to take what's important to you into consideration when they make treatment decisions.   [25:00] As a rheumatologist, steroids are a first-line therapy for Dr. Sims. Their role is the quick control of inflammation. The goal is always to get you off of the steroids as soon as possible, in the safest way possible.   [25:17] When Jason came to Dr. Sims, he was on mepolizumab for the working diagnosis of EGPA. Mepolizumab is one of the primary therapies for EGPA. They talked about not making treatment changes as they were navigating what was happening.   [25:40] They didn't want to make a change of medication and then have that be mistaken for disease activity. They didn't want too many variables moving at once.   [25:47] Typically, the first-line therapy is steroids, meant to help with the swelling, pain, and tightness that patients will get lining their muscles and give them a bit more functionality and decreased pain.   [26:00] Long-term, Dr. Sims gives immunosuppressant medication. She prescribed methotrexate for Jason. In EF, the immune system is overly activated, attacking the lining of the muscles and causing the symptoms.   [26:51] If you suppress the immune system activity, that leads to decreased inflammation and symptoms in the patient. Steroid use, over a few months, is detrimental, with low bone density, weight gain, high blood pressure, and diabetes.   [27:14] Dr. Sims starts with prednisone and folds in medications like mycophenolate or methotrexate.   [27:19] Mepolizumab is an interleukin 5 blocker. Interleukin 5 is part of the immune system and is necessary for eosinophils to grow, function, and multiply. The goal of using mepolizumab is to lower the eosinophils that are contributing to the disease symptoms.   [27:48] Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer. We know how to manage those.   [28:08] If there is no response, we may add something like mepolizumab. As Jason was already on mepolizumab, Dr. Sims added methotrexate.   [28:20] IVIG, an infusion of immunoglobulin, has also been used as a quick way to control inflammation. It is used in other autoimmune diseases like myositis, which is inflammation of the muscle itself.   [29:08] With untreated eosinophilic fasciitis, the lining of the muscle may continue to be inflamed and can lead to fibrosis, damage that cannot be reversed. The patient can become very disabled. Contracture is one result of this.   [30:16] Jason says when he tried a new medication, he monitored if it was a good fit and if the side effects were less impactful than the underlying disease. Dr. Sims adjusted his dosages or tried to get off certain medicines as needed.   [30:59] After his muscle biopsy from his left calf, it took about a month to get back to walking easily. He was already in physical therapy, going many times for a variety of things. He had back pain, potentially related to his EF. His physical therapist was great.   [31:56] The stretches alternated between upper and lower body. Jason bought tools to do the stretches at home. When he's not feeling as well, he goes back to some of those same stretches. When he was on steroids, he took long walks to strengthen his bones.   [32:39] Jason started making phone calls to supportive family and friends on his walks and started listening to podcasts related to his condition or medications. Getting back to tennis and hiking is important to Jason. He's happy to be out there.   [33:20] Jason was open with his employer about his condition. Some of the weekly meds can make him not feel well. His employer gives him some flexibility. He has good days that far outnumber the bad days. He doesn't have to think about EF too much now.   [34:33] It's nothing like when he was in a flare, especially when he was in a flare before being diagnosed. What gets him through a bad day is giving himself some grace and understanding while he waits for his meds to catch up. He rests more than he wants to.   [35:33] Low-impact exercises like walking help Jason. He's trying to find a support network that gets EF. That led him to APFED, to find anyone experiencing something like what he was. He saw a conference that included a session on EF.   [36:09] Jason signed up for the conference and there he met Ryan's mother who has EF. They were each the first person the other had met with EF. They decided to connect after the conference. They talked on the phone for about an hour.   [36:39] She told Jason how she got into APFED and talked a lot about her son who had eosinophilic diseases. Soon after, Jason talked to Ryan as a primer for this podcast.    [38:15] Having a community to relate to, even if it's one person, is massive. It can make you feel less isolated.   [38:42] Holly says it's hard having a chronic illness. She thanks both Jason and Dr. Sims for sharing so much information and their journey and she asks for last words.   [38:58] Dr. Sims believes finding a community is critical. She interviews a lot of patients for research and isolation is a frequent theme. Even the doctor doesn't know what it's like to live with the condition you live with daily. As Jason said, give yourself grace.   [39:33] Dr. Sims tells her patients that they're different from the general population because they have to spend so much time and energy managing their condition that they can't do x, y, or z today, and that is OK. She says to stay motivated and positive.   [40:12] Find what works for you. Walking is good for your physical and mental health. Have the goal of getting back to what makes you happy. Take initiative and find non-medication ways to recuperate. You have control over ways you can feel better.   [40:43] Connect with others and share your story, like Jason did today. It may make someone's journey a little easier and make them feel less alone. Utilize your condition for good, for a bigger purpose.   [41:04] Jason had wished he could meet someone who could tell him what EF would be like over the years. He says to stay positive and find out what you have control over. Jason believes the future is bright for being able to do many things for a long time.   [42:26] For our listeners who would like to learn more about eosinophilic fasciitis, please visit APFED.org and check out the links in the shownotes.   [42:33] If you're looking to find a specialist who treats eosinophilic disorders, like Dr. Sims, you can use APFED's Specialist Finder at APFED.org/specialist.   [42:43] 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/.   [42:55] Ryan thanks Jason and Dr. Sims for joining us for this excellent conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Dr. Catherine Sims, rheumatologist Duke University Hospital Durham VA Medical Center   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “EF patients may present with large plaques on their skin, edema of arms and legs, Raynaud's Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do.” — Dr. Catherine Sims   “Steroids are … first-line therapy. Their role is the quick control of inflammation. The goal is always to get you off steroids as soon as possible, in the safest way possible.” — Dr. Catherine Sims   “Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer.” — Dr. Catherine Sims   “Stay positive and find out what you have control over. The future is bright for being able to do many things for a long time.” — Jason Ingraham

In the final installment of our EoE FAQ series, Dr. Pooja Singhal discusses the critical role of endoscopy in diagnosing and managing Eosinophilic Esophagitis. Learn why this procedure is essential for identifying EoE and other digestive conditions, what to expect during an endoscopy, and what healthcare providers are looking for. Dr. Singhal also explains the importance of follow-up endoscopies in monitoring treatment progress and patient outcomes. Sponsored by Sanofi Regeneron, this episode is a must-listen for anyone seeking a deeper understanding of EoE care and monitoring.

In Part 2 of our EoE FAQ series, Dr. Pooja Singhal answers your top questions about medications for managing Eosinophilic Esophagitis. What are proton pump inhibitors (PPIs), steroids, and biologics? How do these medications work, and how can they help alleviate EoE symptoms? Dr. Singhal also highlights the importance of a collaborative process between patients and healthcare providers in selecting the most effective treatment plan. Sponsored by Sanofi Regeneron, this episode offers a clear and insightful look into EoE medications and their role in treatment.

Send us a textDiscover the groundbreaking innovations at the crossroads of cardiology and gastroenterology with Dr. Michael Koren and Dr. Ali Lankarani, a gastroenterologist and advanced endoscopist. Learn how these medical fields borrow and refine techniques from each other to revolutionize patient care. Dr. Lankarani shares how personal experiences and family influences shaped his career. Doctors Koren and Lankarani discuss how cutting-edge technologies like endoscopic ultrasound are transforming surgical procedures, offering less invasive alternatives that leave no visible scars.The discussion they focuses on Dr. Lankarani's research on using drug-coated balloons to treat strictures in the GI tract. Strictures and shrinkages or blockages in the GI tract that can cause difficulty swallowing and other symptoms. The doctors discuss shortcomings of current care and how early results in clinical trials show promise for reducing complications.Catch Koren's Key Takeaways:

We've received so many questions about Eosinophilic Esophagitis (EoE) that we're bringing you a special 3-part FAQ series with one of the top experts in the field, Dr. Pooja Singhal, a leading gastroenterologist and founder of Oklahoma Gastro Health and Wellness. In this episode, Dr. Singhal breaks down why EoE is often mistaken for a common food allergy, the key differences between the two, and the crucial role specialists play in managing EoE symptoms. Don't miss this insightful discussion, sponsored by Sanofi Regeneron.

Description: 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 Dr. Dan Atkins about Children's Hospital Colorado's multidisciplinary treatment program for eosinophilic gastrointestinal disorders (EGIDs).   In this episode, Ryan and Holly interview their friend, Dr. Dan Atkins. Ryan was a long-time patient of Dr. Atkins and Holly worked as a feeding specialist with Dr. Atkins at Children's Hospital Colorado. Together, Dr. Atkins and Dr. Glen Furuta developed the Gastrointestinal Eosinophilic Disease Program at Children's Hospital Colorado as a multidisciplinary treatment center for pediatric patients impacted by eosinophilic gastrointestinal diseases. They discuss how treatments and medicines have developed over the years. The clinic started with local patients but now also receives referrals from around the United States. Listen in for tips on identifying EGIDs and using multidisciplinary treatment. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.   [1:19] Holly introduces today's topic, the evolution of eosinophilic gastrointestinal disorders, and the guest, Dr. Dan Atkins, a pediatric allergist at Children's Hospital Colorado.   [1:32] With more than 40 years of experience as an allergist, Dr. Atkins has seen the evolution of eosinophilic disease patient care first-hand and helped establish the Gastrointestinal Eosinophilic Disease Program at Children's Hospital Colorado.   [1:46] The Gastrointestinal Eosinophilic Disease Program is a multi-disciplinary program designed for the optimal evaluation and treatment of children with eosinophilic gastrointestinal disorders.   [2:10] Dr. Atkins thanks Holly, Ryan, and APFED for programs like this podcast to help educate the population of patients with eosinophilic gastrointestinal diseases.   [2:39] Dr. Atkins chose a pediatric residency. The last rotation was with an incredible allergist, Dr. Lenny Hoffman, in Houston. Dr. Atkins loved seeing patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis.   [2:59] The thing Dr. Atkins liked about it was he could take kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well. He could see a change in their quality of life. That got him started.   [3:22] Dr. Atkins did an allergy and immunology fellowship in Buffalo, New York with Dr. Elliott Ellis and Dr. Elliott Middleton who had just written the Allergy: Principles and Practice text. They were incredible, brilliant mentors and wonderful people.   [3:55] Dr. Atkins went to the National Institutes of Health to do basic science research after learning of a double-blind, placebo-controlled food challenge by Dr. Allan Bock and Dr. May in Denver.   [4:27] Dr. Atkins did a clinical project on food allergy with Dr. Dean Metcalf, which was one of the first double-blind, placebo-controlled food challenges in adults. They published two papers on it.   [4:47] Then Dr. Atkins went to work on the faculty of National Jewish Health. He was there for 25 years.   [5:04] Dr. Atkins was invited to join the Children's Hospital of Colorado because they wanted to start an allergy program there.   [5:21] Dr. Atkins got interested in eosinophilic gastrointestinal diseases in 2006 after he saw a patient who had had difficulty eating, eosinophils in his esophagus, and food allergies. In another state, a doctor had put him on an elimination diet and he got better.   [5:42] The patient moved to Denver. Dr. Atkins saw him and found the case to be interesting. He looked in the literature and found an article on eosinophilic esophagitis by Dr. Alex Straumann.   [5:53] A gastroenterologist, Dr. Glen Furuta, came to Children's Hospital, looking to work with an allergist. Dr. Atkins met with him and they hit it off. They saw the need for a multidisciplinary program to take care of these patients.   [6:31] Dr. Atkins has always been interested in diseases that led to eosinophilia. Most of them were allergic diseases. Eosinophilic esophagitis and other eosinophilic gastrointestinal diseases came along with much more of a focus on eosinophils in the gut.   [6:45] The first case of eosinophilic esophagitis that Dr. Atkins treated was a patient in 2006. He believes he probably missed earlier cases just by not asking the right question, which is, “Does your child eat slower than everybody else?”   [7:18] Once Dr. Atkins started asking patients that question, it stunned him to find out how many patients said that was part of the issue. He followed up with testing and, sure enough, they had eosinophilic esophagitis.   [7:45] Dr. Atkins says that, in general, eosinophils are present in allergic conditions. If you look at “allergic snot,” and stain it up, it's full of eosinophils. If you have eosinophilic esophagitis and allergic rhinitis, if you swallow snot, it will impact your EoE.   [8:40] Dr. Atkins tends to be more aggressive with using a topical nasal steroid spray with patients who have allergic rhinitis because that decreases the eosinophils in the nose.   [8:50] Dr. Atkins says since eosinophils are on their way to areas that are involved in allergic inflammation, that's how Dr. Atkins got interested in eosinophils. It played out with the multidisciplinary group and eosinophilic esophagitis.    [9:07] Ryan went to see Drs. Atkins and Furuta when he was eight. Ryan is so thankful he was able to go to their clinic and is grateful that the doctors helped to create one of the first programs dedicated to treating EGIDs in the U.S.   [9:40] Dr. Atkins credits Dr. Furuta with the multidisciplinary program. They discussed who needed to be part of it. A gastroenterologist first but Dr. Atkins thought an allergist was also necessary. Treating other allergies helps the patient's eosinophilic condition.   [10:51] They decided they needed excellent nurses who loved working with kids. A lot of the kids had trouble eating, so the group needed feeding therapists and dieticians because these kids have a limited diet. They also needed a pathologist to read the slides.   [12:59] Because this is a burdensome disease, they needed psychologists for the child and the family. Learning coping mechanisms is a big part of the experience.   [14:20] As the program progressed, they saw they needed an endocrinologist to look at the children who weren't growing as expected. In clinic, they needed a child health person who could play games with the kids and keep them engaged during the long visits.   [14:44] That was how the program evolved. They had an idea but they had to show people it would be an active clinic that would grow and they had enough patients to warrant the program. It happened quickly.   [14:54] The program is fortunate to have a wonderful group of people who get along well and check their egos at the door. There are lots of conversations. Everybody's willing to listen and put their heads together. They compare notes and histories.   [15:46] Holly had been working as a feeding specialist at the hospital. Someone was on leave so Holly was put into the clinic. She had never heard of EoE; she didn't know she had it! Her first meeting was a roomful of professionals comparing notes on patients.   [16:31] Holly was in disbelief that these medical professionals met together for an hour weekly to discuss their patients with each other. Later, Holly followed a patient with Dr. Atkins, then Dr. Furuta, then a dietician, and then a nurse. [17:01] As she followed the patient, Holly listened and recognized the symptoms. She thought that she might have EoE! She introduced herself to Dr. Atkins and asked for a referral for a diagnosis. She was diagnosed that year with EoE.   [17:25] Holly sees many unique things about the program. She was impressed that they had the foresight to include a feeding specialist, not a common specialty at the time. Holly also thinks it's neat that the clinic sees patients from all over the country. [18:01] Dr. Atkins says the availability of care is improving across the country. When the program began, people had not heard of eosinophilic esophagitis, not even the local pediatricians. Allergists were just becoming aware of it. They had to be educated.   [18:29] There were people in other communities who didn't have access to multidisciplinary care. Over time the word has spread. Pediatricians are referring patients to the clinic for diagnosis. Care availability has improved.   [18:55] Not every patient needs a multidisciplinary program. If you have mild to moderate eosinophilic esophagitis and you're responding to a current therapy, are doing well, and are communicating well with your provider, that's great!   [19:10] If you need a second opinion or if you have a complicated case, there are some benefits to multidisciplinary care.   [19:33] The providers at the clinic listen to the children as well as to the parents. When a food is removed, a dietician can suggest an alternative the child might like.   [20:07] The clinic wanted to treat local patients but go beyond that, as well. They learn a lot from seeing patients from all over the country with different exposures and being treated by different doctors.   [20:17] When Ryan was young, he would go from his home in Georgia to Denver, yearly. He reflected it felt like summer camp. He got a scope one day and saw the full team of specialists the next few days. It was different from how he was treated before.   [21:06] Ryan says he was listened to and heard, and it was such a great experience for him as a patient to be seen in Dr. Atkins's clinic.   [21:46] Dr. Atkins says they are trying to teach children to be their own advocates. If the doctor does not listen to what the patients have to say, why should they be involved?   [22:50] A patient experience at the clinic starts with somebody deciding they need to go there and get a second opinion or a diagnosis. They get a referral to the clinic. Dr. Atkins mentions the need for administrative staff as part of the clinic team.   [23:40] The patient fills out forms and gives their records to be reviewed by a physician before being seen to see if the clinic is a good fit for them. If it is, the patient is scheduled with an appointment for each doctor and professional in the clinic.   [24:02] The patient records are seen by each professional on the team for how they relate to the professional's specialty. They decide what tests need to be done and if they are covered by insurance.    [24:27] The care team meets before clinic to talk about all new and follow-up patients. Then the patient comes in to see the providers, one after another. Patients don't see all the providers in the same order. The endocrinologist and psychologist are not in the clinic.   [25:39] The clinic visit takes three to four hours. It may involve skin testing for allergies or spirometry for lung function. The patient is scheduled for an endoscopy. When appropriate, they offer transnasal endoscopy, which takes only eight minutes and does not require anesthesia.   [27:11] If the patient has a stricture and the esophagus needs to be dilated, the patient is asleep for that. There is also the esophageal string test, developed by Dr. Furuta. It takes a little over an hour and tells whether there is active disease or not.   [28:02] Care has been made easier. Patients have different options for testing. Holly points out that the family is a part of the team and they are involved in every process and decision. Dr. Atkins says that shared decision-making is a cornerstone of care.   [29:31] Dr. Atkins says what happens in the room is the care provider and patient connect and the patient talks about their problems with somebody they trust. To get the patient to do what they need to do, they have to understand and feel understood.   [31:03] When Dr. Atkins started treating patients with asthma at National Jewish, patients came for a long evaluation, sometimes months. The only treatments were theophylline and steroids. There were side effects to those medications.   [31:39] Dr. Atkins says it has been wonderful to be involved while new treatments have evolved. For eosinophilic esophagitis, when diet works for people, it works. He shares the experience of a teen who is doing great on a diet eliminating milk and eggs.   [32:56] Don't discount diet. It's still up front. On the other hand, that doesn't work for some people. A metered dose inhaler with the puff swallowed may work for some. That's ideal for teenagers. There are other treatment choices like budesonide.   [34:14] Swallowed steroids go to the liver, where they are metabolized. Now biologics are revolutionizing treatment. Not everyone needs biologics but they're a great choice for some.   [35:30] A patient starting out doesn't need biologics as a first treatment. Other therapies may be effective and cheaper. If a patient doesn't respond, they can go to a biologic. More treatments are being developed.   [36:42] Dr. Atkins wishes for a way to determine the food trigger with a simple test.   [38:00] Dr. Altkins remembers Ryan as a little kid who should have gotten off of milk but he just wouldn't do it. He also recalls a patient who thrived when he was put on the right elimination diet, giving up only a couple of foods.   [38:33] Dr. Atkins doesn't want to diminish any of his patients. Every patient is an individual. It's so much fun working through the problems, the goal, and the adjustments to get there and how the patient is dealing with it, and then watching them do better!   [40:35] The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be lifelong. But in the lifetime of patients he is seeing now, Dr. Atkins thinks we will see a cure, or at least, much easier, better treatments.   [40:56] In the population Dr. Atkins treats, they start treatment and all of a sudden, they're not having trouble swallowing. Everyone who had a dilation said they would do it again when needed. They can swallow better.   [41:44] But then, they have to maintain control of the inflammation. When people feel better, their impetus to take the medication drops off. If they stop taking their medications, a month later, they can't swallow their bagels.   [42:18] There are holidays, such as Halloween, that are challenging for kids who are on elimination diets. If they collect candy but can't eat any of it, that may be a problem.   [42:48] People who don't have EoE don't understand not being able to swallow. Dr. Atkins sees dads who have this but don't want to go get checked out. He tells them they need to be examples for their children and go get endoscopies to know if the condition is familial.   [43:53] Dr. Atkins says there are a number of other excellent programs in the country.   [44:24] Holly thanks Dr. Dan Atkins for sharing his expertise to help others and continually teaching the medical community how to recognize eosinophilic diseases and optimize care for all patients.   [44:40] Eosinophilic diseases are not going away. Allergists need to learn the ins and outs of all different eosinophilic disorders. The medications available to treat those disorders are increasing.    [45:02] Early in your career as an allergist, learn as much immunology as you can and how the biologics work and the newer medications coming out. Follow side effects so you know what to say to your patients and what to look for.   [45:20] A lot of EoE patients get picked up in the allergist's office because they have other allergic diseases. As an allergist, ask if the child or parent eats slower than everybody else.   [45:57] Ryan thanks Dr. Dan Atkins for joining today and personally, for all he has done to treat Ryan over the years. He thanks Dr. Atkins on behalf of APFED and for being instrumental in many APFED conferences and educational materials.   [46:30] Dr. Atkins's biggest hope is that people sort out the pathways that lead to eosinophilic esophagitis and that we will have an array of targeted treatments for individual patients to cure that disorder for that patient without side effects.   [47:50] Dr. Atkins thanks Ryan and Holly again for the opportunity to join them. It's been such a pleasure. He thanks APFED again. He has been a big fan for years. Giving patients a voice to share their stories is incredibly important.   [47:34] For our listeners who would like to learn more about eosinophilic disorders, please visit APFED.org and check out the links below.   [47:41] If you're looking to find a specialist who treats eosinophilic disorders, you can use APFED's Specialist Finder at APFED.org/specialist.   [47:51] 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/.   [48:07] Holly thanks Dan and also thanks APFED's Education Partner Bristol Myers Squibb, GSK, Sanofi, and Regeneron, who supported this episode.   Mentioned in This Episode: Dr. Dan Atkins, pediatric allergist Children's Hospital Colorado National Institutes of Health National Jewish Health Allergy: Principles and Practice, by Elliott Middleton Jr., Charles E. Reed, Elliot F. Ellis, N. Franklin Adkinson Jr., John W. Yunginger, and William W. Busse   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “I loved helping patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. You could take these kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well.” — Dr. Dan Atkins   “With patients who have allergic rhinitis, we tend to be more aggressive with using a topical nasal steroid spray because that decreases the eosinophils in the nose.” — Dr. Dan Atkins   “We are trying to teach children to be their own advocates. … If you don't listen to what the patients have to say, why should [the patients] be involved?” — Dr. Dan Atkins   “The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be a lifelong phenomenon.” — Dr. Dan Atkins

Please visit answersincme.com/WSK860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, Evan S. Dellon, MD, MPH, an expert in esophageal disease, discusses best practices to facilitate timely diagnosis of eosinophilic esophagitis (EoE) through symptom recognition and referral at the emergency department. Upon completion of this activity, participants should be better able to: Recognize the consequences of untreated eosinophilic esophagitis (EoE), including the burden of food impaction; Identify best practices to facilitate the timely diagnosis and management of EoE through symptom recognition and referral; and Review the available therapeutic modalities for EoE that support the need for timely referral. This activity is intended for US healthcare professionals only.

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED's Executive Director, interview Kate Goncalves about her diagnosis and treatment journey with EoE.   In this episode, Ryan and Mary Jo discuss with Kate Goncalves how she lived with her symptoms for years before finally bringing them to the attention of her primary care physician at age 16, and how she was connected with a gastroenterologist and diagnosed with EoE. Kate discusses her transition from pediatric to adult care, and how she and her care team prepared for her to travel to go to college. They talk about her treatment plan of eliminating milk and using medications, and how it is a challenge to navigate EoE during the long days on her college campus. Kate also talks about the EoE research project she is working on as part of her pre-med studies, and shares advice for people living with EoE and going away to college. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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] Ryan Piansky introduces the episode, brought to you thanks to the support of education partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Mary Jo Strobel.   [1:31] Mary Jo introduces Kate Goncalves, a 20-year-old living with EoE. Kate is the 2024 recipient of The APFED Abbott College Scholarship, thanks to a grant from Abbott, the makers of the EleCare®  brand elemental formula.   [2:05] Kate is from a small town in Connecticut. She is a junior at Vanderbilt University, studying biology and anthropology. She grew up with day-to-day symptoms of EoE but only expressed the symptoms to her doctor when she was 16 years old.   [2:23] At that point, she underwent testing and was diagnosed. Since then she has been trying to find a treatment plan that works for her. She has navigated changes in her treatment plan while going away to college. She comments that, in college, you don't always have control over the food you eat.   [2:42] It has been a challenge but she has a great support system and care team.   [3:15] In middle and high school, Kate got a food impaction nearly every day at lunch. She thought it was normal. When she finally brought it up to her primary care physician, the doctor suspected EoE. She also had the symptoms of heartburn or acid reflux.   [4:15] Kate immediately had an endoscopy scheduled and was then diagnosed with EoE.   [4:22] Prior to a diagnosis, Kate coped with symptoms by  drinking “a ton” of water with foods to help them go down her esophagus, which was narrowed from scarring. She also avoided bread and meats. She only recognized these as adaptive behaviors after she was diagnosed.   [5:32] Kate was referred to a gastroenterologist. That doctor is still part of Kate's care team. She also saw a nutritionist when looking for a treatment plan that worked for her.   [6:02] Kate avoids anything with dairy in it. Her elimination diet removed anything made with butter, milk, yogurt, and more. At her follow-up endoscopy, her eosinophils were way down so she didn't have to go through the six-food elimination diet. She was very grateful.   [6:43] Mary Jo clarifies for listeners who may not be familiar with the six-food elimination diet, that the foods removed from the diet are typically  milk, egg, wheat, soy, peanut/tree nut, and fish/shellfish.   [7:05/] Kate says it was a tough transition because more foods than you might expect have milk in them. She is grateful she didn't have to cut out gluten or nuts.   [7:32] Kate admits that sometimes she knows there is dairy in the food and eats it anyway. Then the symptoms are most often severe acid reflux and heartburn. She'll get a food impaction if she's been eating dairy for days or a lot of it at once.   [8:35] At school, sometimes the dining hall workers aren't aware if a food has dairy in it.  Some foods are mislabeled as vegan. So Kate often has dairy without knowing it until symptoms appear later.    [9:12] Kate is on a proton pump inhibitor twice a day and a steroid medication. Her first treatment was the elimination of dairy. The summer before going to college, she was also put on these two medications, in case she was exposed to dairy.   [10:50] Kate had to switch from one steroid medication to another because the first one wasn't working for her varying schedule. She asked her doctor for another medication that fit her schedule better.   [11:31] Kate is very grateful to feel autonomy over her treatment plan. She feels her gastroenterologist is amazing. Kate is always free to give feedback about how she is feeling.   [11:46] Kate feels a more present role in her medical appointments now, versus before she was diagnosed. Both with her gastroenterologist and her primary care physician, she has learned to be comfortable being forward and truthful with her doctors.   [13:16] For patients who have not learned to speak up to their care team, Kate suggests being patient. It takes time to get used to the structure of appointments, follow-up appointments, and appointments with a new doctor.   [13:25] When Kate transitioned from her pediatrician to her adult doctors it took her a while to become comfortable with her gastroenterologist and her primary care physician. Don't be afraid to pose questions and concerns, even questions about other treatment plans.   [13:56] Your doctors are there to listen to you and to help you, and you can only gain from bringing something up to your doctor that you are afraid to bring up or that you aren't sure how the conversation is going to go.   [14:47] Kate explains how she tells her friends about her EoE triggers and symptoms and what eosinophils do to her esophagus. Most of her friends study biology and the immune system, so they can understand her condition and needs.   [16:12] EoE impacts Kate's social life. Kate sometimes sits out of activities involving dinners or events with food present. She doesn't want to be exposed to a trigger food. She has also missed events and activities due to hospital visits and appointments.   [16:37] If Kate is having a flare-up of her symptoms, she will also miss activities. All these things lead to feelings of exclusion. No one she knows has EoE. [16:55] Because of her treatment plan and her medications, Kate's symptoms are somewhat limited so she can participate in activities as she chooses.   [17:14] Kate's advice for people who know someone with EoE is to be open-minded. EoE is kind of an invisible disorder. People often think that being allergic to dairy is lactose intolerance, which it is not. Do some research about EoE and its effects. Offer support. [17:42] A patient has a care team whose job is to care for them. When family and friends include you and care for you, it's a very different feeling. As a friend, be patient and offer any support you can. [18:34] When Kate travels, her best tool is communication. Informing food service staff about your allergy is the easiest way to ensure that the food you eat is safe. Kate does lots of research when she travels. This includes looking on restaurants' websites for dietary restrictions.   [20:43] Kate prepared for college by making sure she had a full semester supply of medications and ensuring that she was in close contact with her medical care team over the phone and through MyChart.   [21:19] She made plans with her gastroenterologist to make sure that if anything did come up or if the treatment plan wasn't working in the college setting, they would talk it through when it was needed and not wait until she was home for Thanksgiving.   [21:54] Kate is thankful she chose a school that was connected to a hospital. She feels more safe and prepared for a bad food impaction. She knows she can seek medical attention and have a team on-site very soon.   [22:43] The quality of the dining at the college was a factor in Kate's choice of schools. Vanderbilt has a dining hall completely free of the eight main allergens. When she eats there, she knows that the food she is eating will be safe, without having to ask.   [23:34] For people living with an eosinophilic disorder like EoE, Kate has two tips about preparing to go away to college. First, don't feel limited by your disorder. At first, Kate was afraid of being far away from her care team, but she couldn't be happier now.   [23:56] At college, there are resources and counseling to help you. Being away from home has taught Kate to be responsible as an adult for the treatment of her disorder. So, second, use college as an opportunity to gain responsibility in treating your disorder.   [25:11] Kate is working in a biomedical engineering lab at Vanderbilt University that is researching a way to diagnose and monitor EoE using saliva. They use Raman Spectroscopy to look for biomarkers in saliva from people with EoE, not found in the saliva of healthy people.   [25:51] A successful test would be less costly and quicker than an endoscopy with anesthesia. It would provide a point-of-care diagnostic that would lower the cost and increase the efficiency for patients.   [28:09] Raman Spectroscopy is a form of spectroscopy that measures the vibrational frequencies between chemical bonds. It reads the composition of biological samples. It can tell the amounts of lipids, proteins, or amino acids.   [26:37] The lab is researching the differences in the saliva of people with EoE from the saliva of healthy people. If they can find a difference, and if that difference is universal, we might be able to diagnose EoE using Raman Spectroscopy.   [26:55] Kate says that would be awesome because the anesthesia of endoscopy is “a lot”, every time.   [27:09] Kate is on the pre-med track, which includes doing research. She wanted her research to be on something that she cared about. She is happy to be at a school that is a top research institution.   [27:48] When she learned of this biomedical engineering lab researching ways to diagnose EoE, she immediately reached out to the Principal Investigator and was invited to join. She has been a part of the lab for over a year and it's been an amazing experience!   [28:15] Before going to medical school, Kate plans to take one or two gap years after she graduates so she can further her research with EoE or with other eosinophilic disorders. She would love to see advancements in the field.   [29:16] Kate finds that the most challenging part of living with EoE is feeling lonely, She has never met anyone else with EoE. No one knows what it is when she first explains it to them. It's not a super common disorder.   [29:35] Because EoE is a rare condition, Kate doesn't have much of a community around it in her life. She was excited to learn about and connect with APFED through social media. Even so, it is easy to feel alone in her personal life.   [29:54] Kate doesn't want to have to worry constantly about her food or when to take her medications. She wants to live like a normal, healthy college student, but she can't. Sometimes she doesn't take her disorder as seriously as she should.   [30:25] Sometimes Kate will have that ice cream because everyone else is having it. She wants to live as though she doesn't have EoE. Navigating that without a community that relates to her struggle has been a challenge.   [30:51] Kate's parents, siblings, and friends support her, but it's not the same as having someone who completely understands and is going through it. She feels lonely.   [32:24] Kate says that awareness is super powerful. She went 16 years without knowing she had EoE. She wasn't educated on it. She is sure there are many living with untreated EoE just as she was.   [32:42] Kate encourages anyone listening to spread awareness for eosinophilic research. People are struggling with it. Kate was super excited to come on the podcast today to share her story with anyone in college who might be struggling with EoE.   [33:05] Kate says, if you're struggling with eosinophilic disorders, you're not alone. I'm there, too! She encourages listeners to continue to spread awareness and advocate for eosinophilic disorders.   [33:13] Ryan and Mary Jo thank Kate Goncalves for joining the podcast episode to share her story and help spread awareness.   [33:19] For our listeners who would like to learn more about EoE, please visit APFED.org/EOE. If you're looking to find a specialist who treats EoE, you can use APFED's Specialist Finder at APFED.org/specialist.   [33:40] Kate thanks Ryan and Mary Jo for this opportunity.   [33:43] Mary Jo also thanks Bristol Myers Squibb, GSK, Sanofi, and Regeneron, APFED's Education Partners who supported this episode.   Mentioned in This Episode: APFED College Scholarship Abbott EleCare Elemental Formula MyChart   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “I go to school halfway across the country so I don't have close access to my care team and support. … Knowing I was going to be exposed to some dairy, my GI doctor thought it was best to put me on the steroid medication.” — Kate Goncalves   “Your doctors are there for you. They're there to listen to you and to help you and you can only gain from bringing something up to your doctor.” — Kate Goncalves   “Feeling support from family and friends… you feel so included and cared for. Feeling that from friends versus feeling that from your care team… they're very different. Your care team cares about you but that's their job.” — Kate Goncalves   “I think anyone with a chronic illness would relate to this. I just turned 20 and I'm in college. I don't want to constantly worry about the food I'm eating and when to take my medications. I want to live like my friends.” — Kate Goncalves

In this episode, we welcome back Dr. Pooja Singhal, a leading Gastroenterologist and Founder of Oklahoma Gastro Health and Wellness, to answer listener and YouTube viewer questions about Eosinophilic Esophagitis (EoE). Dr. Singhal shares valuable advice on what to do if you're frequently having trouble swallowing, why it's important not to change your eating habits without seeking medical advice, and the latest research and treatment options for EoE. Don't miss this insightful discussion on how to manage this complex condition. This episode is sponsored by Sanofi Regeneron.  

Send us a textEver wondered what's behind that persistent difficulty swallowing or chest discomfort? On this episode of MedEvidence, Dr. Yuval Patel uncovers the mysteries of eosinophilic esophagitis (EOE), an often-misunderstood chronic allergic condition. We'll take you through the role of eosinophils, the specific white blood cells responsible for allergic reactions, and how their infiltration into the esophagus can lead to painful inflammation and food pipe narrowing. Our conversation expands to the “three Ds” of EOE treatment: drugs, diet and dilation. You'll gain a comprehensive understanding of first-line treatments while we also highlight the crucial role of dietary changes. We wrap up by discussing the vital importance of personalized treatment plans and groundbreaking clinical trials. Don't miss this chance to understand the long-term prognosis and the vital management strategies needed to prevent complications in EOE patients. Join us for an enlightening journey through the complexities of eosinophilic esophagitis!Talking Topics:Understanding Swallowing DifficultyTreatment Options for Eosinophilic EsophagitisManaging and Treating Eosinophilic EsophagitisAdvancements in EOE TreatmentRecording Date: August 7, 2024Be a part of advancing science by participating in clinical research.Have a question for Dr. Koren? Email him at askDrKoren@MedEvidence.comListen on SpotifyListen on AppleWatch on YouTubeShare with a friend. Rate, Review, and Subscribe to the MedEvidence! podcast to be notified when new episodes are released.Follow us on Social Media:FacebookInstagramTwitterLinkedInWant to learn more checkout our entire library of podcasts, videos, articles and presentations at www.MedEvidence.comMusic: Storyblocks - Corporate InspiredThank you for listening!

Description: 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 Dr. Priya Bansal about an allergist's role in treating EoE.   In this episode, Ryan and Holly discuss with Dr. Priya Bansal her career in internal medicine, pediatrics, allergies, and immunology. She emphasizes the importance of patient advocacy and encourages parents to not accept the diagnosis that their child is a picky eater when the child is refusing food. Dr. Bansal talks about the process of reaching a diagnosis and EoE treatment options. Listen to this episode for more information about living with EoE and how an allergist can help.   Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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] Ryan Piansky introduces the episode and co-host, Holly Knotowicz. Ryan and Holly will talk about eosinophilic esophagitis (EoE) and how an allergist can help.   [1:25] Holly introduces Dr. Priya Bansal, an internist, pediatrician, and allergist, who is on the faculty of Northwestern Feinberg School of Medicine and practices at the Asthma and Allergy Wellness Center in Illinois.   [2:06] Dr. Bansal does research and consulting and in a private practice. Throughout her 20-year career, she has enjoyed treating chronic and difficult-to-treat diseases.   [3:06] Now, she enjoys patient advocacy, advocating for EoE, and working with the American College of Allergy, Asthma, and Immunology House of Delegates and the American Academy of Allergy, Asthma, and Immunology.   [3:38] For new listeners, EoE is an allergic and immune disease of the esophagus. With EoE, eosinophils are found in the lining of the esophagus, causing inflammation, and inviting more eosinophils. EoE is a chronic inflammation of the esophagus.   [4:30] A child might have symptoms of food refusal, regurgitation, and abdominal pain. Adults may feel food sticking. The standard for finding eosinophils is endoscopy with six biopsies; two proximal, two mid, and two distal.   [5:24] It is a patchy disease, so the allergist will want to partner with a gastroenterologist who will do the biopsies at the three different levels.   [6:10] Holly tells how she didn't get diagnosed until she was in her mid-twenties. Her doctors thought she was vomiting for attention. They were not familiar with EoE. She was diagnosed as an adult when working at a major hospital.   [7:00] An allergist at a big academic center, working together with a team of doctors from multiple disciplines, may find it easier to diagnose EoE. Many allergists are not working on multi-disciplinary teams.   [7:34] An allergist can look at the resources in the community. Dr. Bansal has several gastroenterology centers that refer patients to her. They partner with Dr. Bansal on the diagnosis and treatment.    [8:02] In other clinics, it may be the gastroenterologist who takes the lead in treatment and refers to the allergist to manage the allergic disease that exists on top of the EoE.    [8:21] As a patient, the diagnosis process depends on where you live. If you have symptoms, don't give up. When Dr. Bansal started, she had to ask pathologists to stain biopsies for eosinophils. Today, staining is done routinely; she doesn't need to ask for it.   [9:07] You are your best advocate. If somebody doesn't believe you, that doesn't mean somebody else won't.   [9:22] Holly is a feeding specialist in Maine. In the three years she has been there, more than 100 people whom she has referred have been diagnosed with EoE.   [10:24] Dr. Bansal says that whether you see an allergist or a GI doctor, depends on which specialty takes the lead on EoE in your community. If you do not have a good rapport with your doctor, make a change. Partner with a doctor who advocates for you.   [11:59] Dr. Bansal advises that when seeing a different doctor, to print out your biopsies to bring. If you are using a biologic therapy, print out the scope that you had right before your biologic therapy, too. That biopsy is your golden ticket if you switch insurance companies.   [13:02] Dr. Bansal uses Care Everywhere, but she wants to see prints of your labs anyway. Not everyone opts into Care Everywhere. She likes the Patient Portal and she is looking forward to someday having a universal portal.   [13:43] Dr. Bansal recommends patients sign up with the Portal for their allergist and GI doctor to facilitate communication.   [15:14] Patients can scan their printed scope reports and share them with their care team, such as by putting them on a keychain USB drive, in a photo album on a phone, or a scanning app on a phone. There are different ways to store the data.   [15:39] Ryan describes how his mother organized his medical history, including all prescriptions, every procedure he has had, and all the doctors he has seen. Ryan was diagnosed at two-and-a-half years old, after visits to six or seven doctors.   [17:30] Dr. Bansal participated in an ACAAI video about the difficulty of diagnosing EoE. The video is linked in the show notes.   [17:41] It is a challenge to diagnose EoE. Some children have milder forms of the disease. When it's familial, some patients think it's normal for the family. Food sticking is not normal for everyone.   [20:08] The patient may live in an area with a lack of access to a knowledgeable specialist. Sometimes the patient just doesn't know who to see. When you make an appointment, call ahead and ask if they treat EoE at that office. Not all allergists do.   [22:18] A podcast episode with Dr. Emily McGowan told of her research study on the prevalence of EoE in urban vs. rural areas. It's not about rural vs urban but about having access to a specialist. Rural patients couldn't find a specialist. [22:44] Ryan notes that you can use the Specialist Finder at APFED.org/specialist to see if there is a specialist in your area. [23:12] With younger patients, Dr. Bansal finds that food refusal is a sign of EoE; that, and abdominal pain. By age 10, patients can say they are having trouble swallowing or that food is getting stuck.   [24:28] Holly finds that pediatricians are often not aware that picky eating and food aversion or food refusal are different situations. Food aversion comes from painful swallowing. Dr. Bansal is trying to create an understanding of EoE among pediatricians.   [26:15] Another sign Dr. Bansal watches for is FIRE (Food-induced Immediate Response of the Esophagus), which is different from PFAS (Pollen Food Allergy Syndrome). FIRE is a narrowing of the esophagus; PFAS is an oral issue.    [27:13] As we get more research and learn more about the disease state and the nuances, the hope is that we could educate pediatricians on how to differentiate a picky eater from a patient with food aversion, using compensation mechanisms to swallow.   [28:15] Ryan compares this episode to a “greatest hits” episode, referring to FIRE and compensation mechanisms in the pediatric patient population. Those are great episodes for our listeners to go back and hear again.   [29:01] When a patient has an EoE diagnosis, Dr. Bansal practices shared decision-making with the patient. She outlines four options for the patient. The first option is eliminating dairy and known food allergens from the diet.   [31:01] With a food-elimination diet, ask your nutritionist what you need to eat more of because of the foods you are eliminating. If you're taking away dairy, you want to make sure you're getting calcium and Vitamin D. If you're taking away wheat, you need zinc.   [31:20] The second option Dr. Bansal talks about with her patients is a high-dose proton pump inhibitor (PPI). The third option is topical budesonide, swallowed with honey. Budesonide is a 12-week prescription. Flovent can also be swallowed.    [32:46] The fourth option is dupilumab. Insurance companies may require you to fail option 2, the PPI, for eight to 12 weeks before paying for this.   [33:40] Dr. Bansal wants patients to understand that they can change between treatment options but she wants a patient to stay on an option for eight to 12 weeks and get a scope to see how it works before switching to another option. Follow-through is necessary.   [34:42] Listeners can watch the video of Dr. Jonathan Spergel's presentation at EOS Connection 2024 to learn more about eliminating milk for EoE and PPI-responsive EoE patients.   [35:14] Dr. Spergel also touched on nutritional deficiencies from some diet therapies. APFED just recorded a great podcast episode on that, as well.   [35:31] Dr. Sara Bluestein made a presentation at EOS Connection on eosinophilic asthma which included an overview of biologic treatments, not just for EoE but for many eosinophilic disorders.   [36:09] Holly loves Dr. Bansal's team approach with patients, where she acts as the coach, helping guide them toward the decision that will work best for their lives.   [36:20] As a feeding specialist, Holly is excited about the dupilumab option for patients who are on feeding tubes for severe inflammation in the esophagus.   [38:18] Budesonide oral is for 11 and up and dupilumab is for ages one and up. Any doctor who will give a patient the proper care may prescribe these to the patient. For dupilumab, the success rate goes up over time, starting at around 60% to around 80%.   [39:27] You want to get the biologic prescribed and approved for EoE. If it is approved for atopic dermatitis, the dosing is too weak for EoE and it fails at two-week dosing.   [39:56] Biologics need to be continued even when symptoms go away, as the symptoms will return. These two medicines are immunomodulators, not immunosuppressants so they don't increase the risk of other diseases.   [41:50] Patients need biopsies to get therapy.   [42:13] Ryan reminds listeners about the trans-nasal endoscopy podcast episode and the episode on the string test, which don't require sedation.   [43:06] Dr. Bansal notes that in trials, benralizumab failed as a treatment for EoE. It brought down the eosinophil count but it didn't treat the patient's dysphagia symptoms. Some specialists are wondering if there's more to EoE than just the eosinophils.   [44:30] Mepolizumab also reduces eosinophils. It is not known if it is effective against EoE. Tezepelumab is undergoing EoE trials now. It reduces eosinophils in the first two weeks. The data is not out on its effectiveness as an EoE treatment.   [44:51] At EOS Connection 2024, Dr. Bluestein gave a great talk on eosinophilic asthma, including information about biologic treatments. More information is coming out about them and their trials for other eosinophilic diseases.   [45:27] Dr. Bansal talks about how great it is to have new biologic options for people who tried an elimination diet, PPIs, and budesonide without relief from dysphagia. There was a void in the space, which is what dupilumab filled.   [46:27] Allergists think that at least 70% of EoE patients have at least one other atopic disease, such as eczema, allergic rhinitis, polyps, or asthma. In pollen season some patients' EoE gets worse.   [47:11] Dr. Bansal tells patients she doesn't want them dripping and draining into the esophagus. She doesn't want them to add inflammation where there is already inflammation. So she treats their allergies.   [47:44] After a dilation, a patient may feel cured. It's just a stopgap; they'll be back if they don't treat their EoE. Dr. Bansal hopes that allergists treat any allergies as well as the EoE, so the allergies don't have a negative impact on the EoE.   [49:41] There's no harm in getting an evaluation and seeing if there is something you could be doing to minimize the overall disease impact on your body and keep you healthier overall. Inflammation anywhere is never a good thing.   [50:41] Ryan and Holly thank Dr. Bansal for joining the podcast today.   [51:01] Dr. Bansal's last word: “I would advise parents to trust your instincts. If you think that something's wrong, even if somebody's telling you it's not wrong, get to the right people. Some insurances allow you to make an allergist appointment without a referral.”   [52:18] If an allergist tells you there is a problem, know that they have years of experience with allergy patients. Dr. Bansal has hundreds of patients with EoE in the clinic. Create a partnership with an allergist.   [53:12] If you would like to learn more about EoE, please visit APFED.org/EOE. If you're looking to find a specialist like Dr. Bansal, you can use APFED's Specialist Finder at APFED.org/specialist.   [53:29] 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.   [53:39] Ryan thanks Dr. Bansal again for joining us on Real Talk: Eosinophilic Diseases. Dr. Bansal thanks Ryan and Holly. Holly would like to clone Dr. Bansal with all her enthusiasm. Holly also thanks Education Partners, Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Priya Bansal M.D.Northwestern Feinberg School of Medicine Rush University Medical Center Care Everywhere   Video: Diagnosing and treating pediatric EoE, ACAAI Video: Diagnosing and treating adult EoE, ACAAI “One-food versus six-food diet elimination therapy for EoE…”, The Lancet APFED EOS Connection Conference 2024   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “We have other things that we're working with. We're trying to find biomarkers and other tests that are not as invasive but for right now, it's the endoscopy with six biopsies; two proximal, two mid, and two distal.” — Dr. Priya Bansal   “As we get more research and learn more and more about the disease state and the nuances and some of the things that we're seeing, obviously then, the hope is that we could educate people.” — Dr. Priya Bansal   “You've got to have your biopsies. I know everyone hates them, everyone hates the scope, it's uncomfortable, it's annoying. I get it, but you need it to get therapy.” — Dr. Priya Bansal  

Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, have a conversation about the latest findings from the EGID Partners Registry.   In this episode, Ryan and Holly discuss with Dr. Elizabeth Jensen two studies drawn from data obtained by EGID Partners Registry questionnaires. One study focuses on extraintestinal pain experienced by patients living with EoE and other eosinophilic gastrointestinal disorders (EGIDs). The second study considers vitamin and iron deficiencies reported by patients living with EoE and other EGIDs. Dr. Jensen hints at connected research she would like to pursue next. Listen for more information about extraintestinal pain, vitamin deficiencies, EoE, and EGIDs.   Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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: [:58] Ryan Piansky introduces the episode. He and co-host Holly Knotowicz will talk about the latest findings from the EGID Partners Registry.   [1:28] Holly introduces Dr. Elizabeth Jensen, an Associate Professor at the Wake Forest School of Medicine and an Adjunct Professor in the Department of Medicine at the University of North Carolina at Chapel Hill.   [1:58] Dr. Jensen has been working on research related to eosinophilic gastrointestinal diseases since she was in graduate school.   [2:11] Dr. Jensen's background is in maternal and child health. She was interested in how early life exposures alter colonization of the gut microbiome and how that can lead to immune dysregulation.   [2:33] Dr. Jensen became interested in EoE and eosinophilic gastrointestinal diseases because her family members had been affected by these conditions and researchers knew next to nothing about the pathogenesis of these conditions.   [2:52] Dr. Jensen's early research explored early life exposures that relate to the development of eosinophilic gastrointestinal diseases.   [3:02] That research paved the way for a variety of ongoing research studies in Denmark, the U.S., and through the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).   [3:30] The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or multiple ones.   [4:21] The registry is also for individuals who haven't been diagnosed. The EGID Partners Registry gives a voice to individuals who are living with these conditions, in terms of directing where we go with research and asking patient-centered questions.   [4:58] To participate in the registry, go to EGIDPartners.org and register. Once you have registered you will receive a link to a questionnaire. The questionnaire can seem long.   [5:23] After the first questionnaire, the registry sometimes asks for updates to your baseline information and asks new questions that have been suggested by others.   [5:45] The EGID Partners Registry has a Scientific Advisory Committee, and patient advocacy groups, including APFED, physicians, and researchers, who direct where to go with the rich data that has been collected.   [6:07] Some of the questions are specific and asked by registry members with individual interests. Some of the questions are directed by input received by patient advocacy groups.   [6:48] After collecting these data, EGID Partners analyzes them and disseminates them by presenting them at meetings to get information to providers and individuals affected by these conditions.   [7:50] EGID Partners Registry did a study titled “Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases” and published a poster on it. They explored joint pain, leg pain, and headaches, to see if they were related to an eosinophilic condition.   [8:29] They studied pain severity and frequency as well as migraines. A high proportion of individuals reported pain. They studied those with EoE only and those with another EGID, including eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis.   [9:06] The second group included individuals with or without EoE. In general, patients who have one of these non-EoE EGIDS, with or without EoE, tend to experience more frequent pain and more severe pain.   [9:30] They've also seen that result in looking at other comorbidities. It reinforces the idea that patients who have multi-segmental EGIDs, or one of these lower EGIDS, tend to experience, on average, more severe extraintestinal symptoms.   [10:39] The three areas of pain highlighted on the poster were legs, joints, and headaches. This was based on feedback from patients saying, “This is what we're experiencing, is it something that you could look into?”   [10:48] It doesn't preclude the possibility that there may be other types of extraintestinal manifestations that we should be looking at in the future.   [11:27] This study by the EGID Partners Registry feels very impactful to Dr. Jensen. It brings awareness to some of the challenges that individuals with these conditions are experiencing. Holly points out it's a way for patients to get access to experts.   [12:20] In this study, the EGID Partners Registry also looked at what proportion of individuals were taking either over-the-counter pain management medications or prescription medication. [12:39] About the migraine headache pain, most of it was over-the-counter use, although some reported prescription medication.   [12:54] Ryan grew up experiencing leg pain all the time. He attributed it to his other chronic disorders. It wasn't until some years ago at an APFED conference that he heard a physician mention leg pain. Ryan had never considered it as an EoE symptom. [13:38] One of the challenges the EGID Partners Registry has is that they don't have enough individuals registered to start dividing the sample up further, by age. Roughly two-thirds of the respondents were adults. [14:12] It's also hard to get kids to report accurately what they are experiencing. It often comes down to the caregiver reporting it to the EGID Partners Registry, which brings its challenges.   [14:34] Ryan calls all patients listening to sign up with the EGID Partners Registry to allow the registry to get to some of these deeper questions.   [14:47] Dr. Jensen adds that people often want to understand why these pains are connected to EGIDs. EGID Partners Registry doesn't know why.   [15:02] There are underlying biological processes that could potentially contribute to this observation of the increased prevalence of extraintestinal pain manifestations. In the EGID population, there is the enrichment of connective tissue disorders and more.   [15:36] There is also evidence that there are increased comorbidities associated with a more inflammatory milieu. That could contribute to these extraintestinal manifestations of pain.   [15:55] Dr. Jensen hopes to bring greater awareness to patients and providers, honoring what the patient is experiencing and digging a little deeper to understand what may be going on for this patient.   [16:17] EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs. They looked at those who had been diagnosed with EoE alone and those who had another EGID, with or without EoE.   [16:47] In this study, unlike with the pain manifestation, they didn't see a statistically significant difference between EoE alone and the other EGIDs. There was some higher proportion in those with the lower EGIDs, but it didn't reach statistical significance.   [17:16] They saw a high proportion reporting physician-diagnosed vitamin deficiency, mainly Vitamin D and a few others. That suggests the need to screen patients for vitamin deficiency with a new diagnosis and when monitoring response to therapy.   [18:28] There are reasons why there could be vitamin deficiencies. You may have a restrictive diet or be avoiding certain foods because you know they are going to bother you, or for the lower EGIDs, it may be that you're experiencing malabsorption.   [19:04] Holly plans to send this study to the people she is working with. She will ask them to read it, and then work to get a baseline.   [19:56] A patient could ask for this test from any provider. Dr. Jensen says if it helps them to bring the evidence from these papers, that's great; she hopes this empowers patients when they talk with their providers about the care that makes sense for them.   [20:41] EGID Partners Registry compared those reporting a deficiency between those with EoE alone and those without EoE. Eighty-two percent of those with EoE reported a Vitamin D deficiency. About a fourth of each group reported a B12 deficiency.   [21:27] Iron was another deficiency reported by 55% in the EoE group and 69% in the Non-EoE EGID group. Vitamins D and B12, and Iron were the top deficiencies reported. Many of the respondents reported they were taking vitamins or dietary supplements.    [22:32] Dr. Jensen thinks a nice follow-up study to this would be to learn the proportion of respondents taking vitamin injections or infusions because of malabsorption issues with oral supplements.   [22:37] Dr. Jensen thinks this study likely reflects an under-ascertainment of vitamin deficiency. A lot of patients aren't getting screened. We don't have the data yet because it's not a universal recommendation to screen for vitamin deficiencies.   [23:01] Dr. Jensen thinks awareness and increased screening will be key. Then we can start thinking about how we mitigate this.   [23:24] Patients did not report symptoms of vitamin deficiencies. Dr. Jensen thinks that's another good follow-up question. She stresses that it's important to screen for deficiencies whether or not symptoms of deficiencies are present.   [24:06] Holly considers her patients with various symptoms of vitamin deficiencies and wants to get on the website and ask questions. Dr. Jensen tells her there is a link on the registry site where you can suggest a question. She asks Holly to suggest a question!   [24:30] Patients were asked if they have ever had a vitamin deficiency and were also asked if they currently take vitamins or supplements. A vitamin pill is one type of supplement.   [25:10] The study also looked at the use of a variety of complementary and alternative medicine approaches that patients turn to because they're not getting adequate relief from traditional approaches to addressing their conditions.   [25:34] They saw a higher proportion of individuals with non-EoE EGIDs reporting the use of these kinds of alternative treatment approaches. Roughly a fourth of non-EoE EGID patients reported the use of a chiropractor, vs. 10% of EoE patients.   [26:11] Roughly one-fourth of non-EoE EGID patients reported turning to different herbal approaches in trying to get some relief for their conditions.   [26:49] Dr. Jensen says as a researcher, whenever she does a study, she is led to more questions. All of the research so far has opened the door to many more questions, including questions about individuals who don't have either EoE or another EGID.   [27:20] Dr, Jensen wonders, is this extraintestinal pain unique to those who have EoE and non-EoE EGIDs? How do we best mitigate this? What does the workup look like for the patient coming in with joint pain or leg pain?   [27:37] How can we understand the factors that contribute to this pain? How do we get providers thinking about screening for vitamin deficiencies so we have a better understanding of their prevalence in this patient population?   [28:04] If patients are not absorbing vitamins orally, How do we mitigate this? How do we optimize their nutrition so they are not dealing with vitamin deficiencies which can lead to other consequences down the road?   [28:24] The surprises are always, “What doors are getting opened as a result?” We've answered some questions but there are so many questions that we still need to answer.   [28:56] Ryan asks if a correlation was found in these studies between vitamin deficiencies and extraintestinal pain. He notices that missing his vitamins correlates with more leg pain. Dr. Jensen asks Ryan to go onto the website and pose that question!   [29:10] Dr. Jensen has not looked at the data in that way but she thinks it would be an interesting way to bring these two studies together and try to explain some of what they are observing.   [29:21] Holly thanks Dr. Jensen for sharing her expertise and this fascinating research to help all EGID patients have less painful and better quality lives.   [29:52] Dr. Jensen makes this request. “Please consider checking out the EGID Partners Registry website, joining, learning more about how you can contribute to this research, and introducing questions.”   [30:04] “We're always looking for new questions and are excited to think about how we can partner with patients in addressing questions that matter to them. Help us continue to answer some of these critical questions.”   [30:32] One topic Dr Jensen is interested in researching is the implications for reproductive health for having these conditions. Some research in another data source suggests potential implications.   [30:54] EGID Partners Registry observed and reported this year that there may be some indication of a longer time to pregnancy and a lower proportion of EGID patients experiencing a pregnancy. They want to look at that and understand it better.   [31:12] They want to understand it with more detail than they can get from the administrative data source with the initial questionnaire. EGID Partners Registry is pushing out a reproductive health history questionnaire now.   [31:29] EGID Partners Registry needs individuals to join and respond to the reproductive health questionnaire to help them understand this more deeply and some of the findings they are seeing initially in some of these other data sources.   [31:49] Ryan encourages listeners to learn more about Dr. Jensen's research and EGID Partners Registry by visiting EGIDPartners.org. To learn more about eosinophilic gastrointestinal disorders, visit APFED.org/egids.   [32:13] To find a specialist in eosinophilic disorders, use APFED's Specialist Finder at APFED.org/specialist. To connect with others impacted by eosinophilic diseases, join APFED's online community on the Inspired network at APFED.org/connections.   [32:31] Ryan thanks Dr. Jensen for joining us on Real Talk. Dr. Jensen thanks Ryan and Holly for having her on the podcast to talk about this research. Holly also thanks Education Partners, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Dr. Elizabeth Jensen PhDAssociate Professor at Wake Forest University School of MedicineAdjunct Professor in the Department of Medicine at the UNC at Chapel Hill Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) EGID Partners Registry Digestive Disease Week (DDW)   “Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases” “Frequent Report Of Vitamin Deficiencies And Use Of Supplements And Complementary/Alternative Treatment Approaches In Patients With Eosinophilic Gastrointestinal Diseases” (EGIDPartners Registry) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/egids apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, and Regeneron.   Tweetables:   “The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or with multiple ones.” — Dr. Elizabeth Jensen   “The EGID Partners Registry studied extraintestinal pain severity and frequency and migraines. There was a high proportion of individuals reporting experiencing pain.” — Dr. Elizabeth Jensen   “EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs.” — Dr. Elizabeth Jensen   “Is this unique to EoE and non-EoE EGIDs? … How do we best mitigate this for the patient who is coming in with joint pain or leg pain? What does the workup look like for those patients?” — Dr. Elizabeth Jensen   “The surprises are always, ‘What doors are getting opened as a result?' We've answered some questions but there are so many questions that we still need to answer.” — Dr. Elizabeth Jensen

Eosinophilic Esophagitis (EOE) is an allergic condition in the esophagus that often goes undiagnosed for up to 10 years. In the last two years since we first covered EoE, new treatment options are now available for this chronic condition. Gastroenterologist Dr. Milli Gupta returns to help us understand the new treatment options and explain what patients need to know in preparation for discussing their options with their healthcare provider. This episode provides a basic overview of EoE, including the signs and symptoms a person may experience, such as trouble swallowing, food impaction, and the adaptive behaviors at mealtime, that signal it's time to seek medical attention. This episode is brought to you by Sanofi Regeneron.

Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED's Executive Director, have a conversation about EOS Connection 2024, live at the conference.   In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder's Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading. Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024. Listen in for more information about the EOS Connection 2024 conference.   Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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] Ryan Piansky introduces the episode. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED's annual patient education conference.   [1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder's Award. It was a joy for Mary Jo to present the award to Ryan.   [1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They've known Beth for just as long. It was perfect.   [2:23] Ryan's highlights of this year's conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers.   [3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference.   [3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE?   [3:57] Ryan also says it's interesting to hear. APFED doesn't want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else.   [4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they've lived with symptoms for years, not knowing what it was, and now have a diagnosis.   [4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis).   [5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects.   [5:59] Mary Jo found Friday's conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment.   [6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test.   [6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference.   [6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be.   [6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow.   [7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites.   [7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game.   [8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers.   [8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it's not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, “Wow, you're just like me!”   [8:46] For Ryan, it's amazing that the conference can offer that environment for everybody. Ryan says it's wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them. [9:13] Many incredible volunteers came to help; Ryan mentions some by name. It's wonderful that the conferences have been able to create such a tight-knit community for these patients. [9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well.   [9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline's advice that you may not be able to change the situation but you can change how you react to it. It's important for children to learn and adults to remember; you are not your disease.   [10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you're a kid first and then you also have to deal with allergies, medicines, and doctors' appointments.   [10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity.   [10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness.   [10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability.   [11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation.   [11:47] You can find the new EGPA Toolkit at APFED.org.   [11:59] Ryan thinks it's exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis.   [12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year.   [12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research.   [12:37] Mary Jo answers that's why we call it EOS Connection! Ryan agrees; we're making those patient connections even among these rare subsets.   [12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well. [12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit APFED.org/conference and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024.   [13:21] Ryan thanks our education partners for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event.   Mentioned in This Episode: EOS Connection 2024 Conference APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/egids apfed.org/specialist apfed.org/connections   Tweetables:   “It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities.” — Ryan Piansky   “It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.” — Mary Jo Strobel   “We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org.” — Mary Jo Strobel   “It's exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we're able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.” — Ryan Piansky

We're all feeling the intensity – so how can Feminine Wisdom support us to navigate through it? Well, it starts with taking a pause, putting on our “wise being glasses,” and then taking a deeper look at what is going on in the Field (the bigger collective world) and in our personal field (our own inner experiences, relationships and reality). This pause allows us to see what is real, what is needed, what the patterns are, and to find the wisdom to navigate the now and the next. In this episode, Christine and Jennifer explore how Feminine Wisdom can support us in intense times, to elevate and expand our consciousness, so that we can liberate ourselves from the stuff we just don't want to carry with us or create from anymore. The intention of our exploration is to give you perspectives and practices to prepare you for the now, and the next. Some of the wisdom models, practices and tools we'll work with in this episode are: Triangle of Transformation Sovereignty in the Swirl This is not that Co-Create from Momentum and Intention Be aware of the now and what's needed, AND keep the long game in mind. Put energy into both. Focus on your part and your design. If you are not clear, create space to get clear this year. EOE: Evidence of Elevation EOM: Evidence of Momentum Between now and the next episode, Christine and Jennifer invite you to contemplate the inquiry: What EOEs and EOMs am I seeing? Bonus invitation: SHARE this podcast with a friend, and invite them to play the EOE / EOM Game with you – share one EOE or EOM with each other every day. It's how we can all Stay Light together, in community – join us! Resources & Links: Morning Practice Guide Overwhelmed & Over It book - Read Section 2: Liberate Your Life Force  Triangle of Transformation - video and model posted on the Feminine Wisdom Cafe  What's next? Tune in to the 9-part Season of Light series, running now through the end of August - and invite a friend to join you! Remember to SHARE this podcast episode with at least one friend or colleague. Then invite them to play the EOE / EOM Game – find and share one EOE or EOM daily with each other. Notice how this simple act supports you in Staying Light! Ways to Connect: Join us in the Feminine Wisdom Cafe, a private online community Subscribe to Christine's Monthly Wisdom Letters Connect with Christine and Jennifer on LinkedIn Watch on YouTube

We welcome back Dr. Evan Dellon from the University of North Carolina School of Medicine at Chapel Hill to discuss the latest advances in research and treatment options for Eosinophilic Esophagitis. In this episode we discuss several of the standout abstracts we found extremely encouraging for patients living with an EoE diagnosis that were presented at this year's Digestive Disease Week (DDW), an annual scientific conference. This episode is brought to you by Sanofi Regeneron. 

Nicole Jaques is a wife, a mom of two, a successful influencer, and the CEO of her home. Carrying on the traditions of her grandmother, she takes Kevin and Kyle on a journey through her health journey while exploring the many ways to embody your inner CEO.LINKS FROM THIS EPISODE:Nicole's Blog: https://nicolejaques.com/Follow Nicole on Instagram: https://www.instagram.com/itsnicolejaques Check Out the Home CEO Podcast: https://nicolejaques.com/the-home-ceo-podcast/ CHAPTERS:(0:00:00) - Start(0:00:40) - Introduction(0:01:28) - Being the CEO of your home(0:03:27) - The lost art of home economics(0:04:37) - The origin of Nicole's kitchen tips and tricks (0:06:49) - Reflecting on the journey so far(0:08:47) - Autoimmune's impact on Nicole (0:12:14) - Changes after her diagnosis(0:16:07) - EOE explained(0:18:00) - Top tips and tricks for clean home products(0:23:06) - The best way to wash fruits(0:27:34) - Primary ingredients in homemade cleaning products(0:29:15) - Things for new moms to consider(0:33:11) - Make your home smell great without candles(0:40:03) - Lightning round questionsDisclaimer: The Clean Kitchen Podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.

PayerTalkCE™ Presents: Managing Eosinophilic Esophagitis (EoE): Collaborative Care and the Patient Journey Embark on an enlightening journey through the complex world of eosinophilic esophagitis (EoE) management. Join host Dr. Steve Kheloussi (Highmark, Inc.), alongside experts Mary Jo Strobel (American Partnership for Eosinophilic Disorders, and Dr. Evan Dellon (University of North Carolina at Chapel Hill), as they unravel the intricacies of the patient journey with EoE. This episode delves deep into the challenges of diagnosing EoE, the significant impact of delayed diagnosis, and the innovative approaches to collaborative care. Discover the evolving recommendations that are shaping the future of EoE management and how multidisciplinary teams are working to improve outcomes for patients. This insightful discussion offers a comprehensive look at the efforts to enhance the quality of life for those affected by EoE, emphasizing the importance of timely intervention and ongoing monitoring. This activity is certified for CME/CNE/CPE credit. To participate and earn credit, visit us at https://www.impactedu.net/payertalkjourney/. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen/

Did you know most states have programs for CF families, and they don't have to do with your income? Michigan has one of the best programs in the Country. It's called Children's Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about it.Brandi Berry, LLMSW is the Program Coordinator of the Kent County Children's Special Health Care Services Program, Fetal Infant Mortality Review and the Healing Through Grieving: Pregnancy, Infant, Child Loss Program, all of the Kent County Health Department.   Brandi has over 20 years' experience in the field of Child Welfare and Human Services.  She is also a Full Spectrum Doula and as well as an Adjunct Professor with the Grand Valley State University School of Social Work.  Brandi is the mother of three children, the oldest of which has rare disease, EOE.  She enjoys reading, traveling, and spending time with her children.         To find out more about Children's Special Health Care Services program: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/the-family-center-for-children-and-youth-with-special-health-care-needs-family-center Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Dr. Joshua Wechsler and Prof. Arjan Bredenoord discuss the burden of disease in patients with EoE, the impact on quality of life, and how to overcome challenges in identifying EoE. ADVENT is a medical education non-promotional resource for healthcare professionals organized by Sanofi and Regeneron. Learn more at ADVENTprogram.com. This podcast is intended for healthcare professionals only. Disclaimer:  This program is non-promotional and is sponsored by Sanofi and Regeneron Pharmaceuticals, Inc. The speakers are being compensated and/or receiving an honorarium from Sanofi and Regeneron in connection with this program The content contained in this program was jointly developed by the speakers and Sanofi and Regeneron and is not eligible for continuing medical education (CME) credits Speaker disclosures: Arjan Bredenoord, MD, PhD (Adult Gastroenterologist): Professor, Gastroenterology and Hepatology, Amsterdam University Medical Center, Amsterdam, the Netherlands Joshua Wechsler, MD, MSci (Pediatric Gastroenterologist): Attending Physician, Division of Gastroenterology, Hepatology & Nutrition; Campaign Urging Research for Eosinophilic Disorders (CURED) Foundation Research Scholar; Medical Director, Eosinophilic Gastrointestinal Disorders Program; Assistant Professor in Pediatrics & Medicine, Northwestern University – The Feinberg School of Medicine © 2024 Sanofi and Regeneron Pharmaceuticals, Inc. All Rights Reserved. MAT-GLB-2304791 - 1.0 - 05/2024 MAT-US-2404998 v1.0  - P Expiration Date: 05/15/2026

Dr. Pooja Singhal, a Gastroenterologist with Oklahoma Gastro Health and Wellness, returns to the show to share her expertise on Eosinophilic Esophagitis (EoE). Specifically, Dr. Singhal answers questions about the role Non-GI Advanced Practice Practitioners play in keeping EoE patients on track with their treatment and when a patient should be referred to a gastroenterologist. She highlights what makes EoE a progressive condition and why early diagnosis, treatment and ongoing management is vital. This episode is brought to you by Sanofi Regeneron.

Send us a Text Message.Imagine the impact of groundbreaking studies on your health as Dr. Koren unveils three revolutionary areas in medicine. From the persistent agony of refractory migraines to the swallowing difficulties caused by eosinophilic esophagitis, and the inherited dangers of lipoprotein(a) affecting heart health, he offers a beacon of hope. Witness the power of clinical research that goes beyond traditional treatments, as Dr. Koren introduces us to CGRP antagonists – a game changer in migraine management. He also highlights the strides being made to address the challenges of EOE and the promising treatments emerging for lipoprotein(a) that could drastically reduce this menacing cholesterol. Join us for today's MedEvidence Monday Minute into the future of healthcare, illuminated by Dr. Koren's passion and expertise.Be a part of advancing science by participating in clinical researchShare with a friend. Rate, Review, and Subscribe to the MedEvidence! podcast to be notified when new episodes are released.Follow us on Social Media:FacebookInstagramTwitterLinkedInWant to learn more checkout our entire library of podcasts, videos, articles and presentations at www.MedEvidence.com Powered by ENCORE Research GroupMusic: Storyblocks - Corporate InspiredThank you for listening!

What happens when your patient with Eosinophilic Esophagitis (EoE) becomes pregnant? Will pregnancy trigger symptoms? Will EoE affect your pregnant patient's ability to get proper nutrition? Can patients continue using medications prescribed for EoE? We welcome back Dr. Claire Beveridge, a Gastroenterologist from The Cleveland Clinic, to answer these questions and more so Primary Care and OB-GYN providers are armed with the information they need to better support their patients. Patients will also find this episode helpful if they have questions related to EoE and pregnancy. This episode is brought to you with support from Sanofi Regeneron. 

Pediatric Gastroenterologist Dr. Sophia Patel of the Cleveland Clinic explains the presentation of Eosinophilic Esophagitis (EoE) in children and what parents and caregivers should know about treatment options that are available for children. Dr. Patel also explains the progressive nature of EoE and why treatment adherence is key to successful management of EoE. She also shares tips to help older adolescents or young adults maintain their treatment plans. This episode is brought to you by Sanofi Regeneron.   

Eosinophilic Esophagitis (EoE) is increasingly recognized as a major cause of swallowing difficulties in children and adults. It affects about one in 2,000 people. But the differences in EoE presentation and outcomes by ethnicity and race remain understudied. Dr Evan Dellon from the University of North Carolina School of Medicine at Chapel Hill is here to explain EoE and discuss the recent findings of a study he co-authored, “Clinical Features and Treatment Response to Topical Steroids in Ethnic and Racial Minority Patients With Eosinophilic Esophagitis.”  We focus on what patients need to know about the main findings, as well as tips for patients to begin discussing their symptoms and treatment options with their provider. This episode is brought to you by Sanofi Regeneron.   

On this episode of Food Allergy Talk, I welcome Jennifer Togal. Jennifer is mom to Adina, the spark behind The ADINA Act, which will require all OTC and RX medications to be labeled with any applicable food allergens and/or gluten ingredients and related information.Jennifer carries an EpiPen herself and Adina has Celiac disease, a dairy allergy, and they both have EoE. They live in the Minneapolis, Minnesota suburbs. Need to freshen up on your knowledge of legislation? Check out this educational video referenced in this podcast episode:Schoolhouse Rock "How a Bill Becomes a Law".Take action and help support The ADINA Act. Links referenced in this podcast:House Bill HR 4263Senate Bill S. 2079Linktreehttps://linktr.ee/theadinaact The Linktree has links to a 1-pager fact sheet (first link on page), press releases as well as news stories about the ADINA ActFARE link to auto-send letters to Rep's and Senatorshttps://foodallergy.quorum.us/campaign/48768/Instagram@the_Adina_act_effortFB Grouphttps://www.facebook.com/groups/3347959928865461/Locate your US Representativehttps://www.house.gov/representatives/find-your-representative#:~:text=If%20you%20know%20who%20your,the%20U.S.%20House%20switchboard%20operator.Locate your US Senatorhttps://www.senate.gov/senators/senators-contact.htmJoin 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

Dr. Ikuo Hirano and Dr. Margaret (Peggy) Marcon highlight why dysphagia may be overlooked and share insights from their own clinical practice on how to unmask EoE behind patients' adaptive behaviors. ADVENT is a medical education non-promotional resource for healthcare professionals organized by Sanofi and Regeneron. Learn more at ADVENTprogram.com. This podcast is intended for healthcare professionals only.   Disclaimer:  This program is non-promotional and is sponsored by Sanofi and Regeneron Pharmaceuticals, Inc. The speakers are being compensated and/or receiving an honorarium from Sanofi and Regeneron in connection with this program The content contained in this program was jointly developed by the speakers and Sanofi and Regeneron and is not eligible for continuing medical education (CME) credits Speaker disclosures: Dr. Ikuo Hirano, MD has received consultation fees from Adare/Ellodi, Allakos, Pfizer/Arena, AstraZeneca, Celgene/Receptos, Eli Lilly, EsoCap, Gossamer Bio, Parexel/Calypso, Regeneron, Sanofi, Shire/Takeda, Phathom, Nexstone. He has participated in clinical trials for AstraZeneca, Celgene/BMS, Regeneron, Shire/Takeda, Ellodi/Adare, Allakos and been a member of Speaker Bureaus for Sanofi and Regeneron. Dr. Peggy Marcon has received fees from Nutricia, Sanofi for education. © 2024 Sanofi and Regeneron Pharmaceuticals, Inc. All Rights Reserved. MAT-GLB-2304790 v1.0 03/2024 MAT-US-2402674 v1.0 - P Expiration Date: 03/07/2026

#414: It's not uncommon for infants or toddlers to refuse food. Food refusal can be due to illness, tiredness, your baby's temperament on that day…but, there is a disease that results in food refusal called Eosinophilic esophagitis or EOE. EOE is a chronic, allergic inflammatory disease of the esophagus that causes damage that makes it difficult and uncomfortable for the baby or toddler to eat which in turn results in poor growth, chronic pain and/or difficulty swallowing. The symptoms of EOE are sometimes confused with reflux and in this episode Dr. Antonella Cianferoni, MD, PhD explains what EOE is…why it sometimes gets confused with REFLUX, how it's treated as an allergic disease….and I think you'll be surprised because the treatment and certainly the diagnosis is quite different than the other allergic diseases we've covered here on the podcast. CHOP's Center for Eosinophilic Disorders: https://www.chop.edu/centers-programs/center-pediatric-eosinophilic-disorders  American Partnership for Eosinophilic Disorders (APFED): https://apfed.org/about-ead/egids/eoe/ Shownotes for this episode are here: https://blwpodcast.com/414 

Thank you for joining us for our 2nd Cabral HouseCall of the weekend! I'm looking forward to sharing with you some of our community's questions that have come in over the past few weeks…   Sarah: Hi Cabral! I'm 27 female, I've been suffering with UTIs and yeast infections for a few years now (as well as low hormones estrogen, prog, test + high cortisol), acne since 20. Previous hormone test also showed heavy metals and liver not detoxing properly. On research I've seen candida and parasites go hand in hand? And that there is an order to cleansing/healing. I don't have the funds to do multiple tests, I've already tried a bunch of things (dmannose, garlic, oregano oil, caprylic acid, sugar elimination ETC) - still dealing with issues, want to heal for good. Where do I start/what do I tackle first? I'm taking a biofilm disruptor + probiotics, planning on trying antimicrobal herbs again and maybe start doing castor oil packs and coffee enemas. Unsure how to do parasite cleanse? Thanks!   Kay: Hi Dr. Cabral I can't thank you enough for the rain barrel effect, it has changed my life. I am wondering what your exact protocol for removal Mercury dental fillings. For context I ran the big 5 as I have candida and a very sensitive gut, and psoarisis. I wanted to know the root cause before starting to try and get pregnant. I came back high on mercury, and aluminum. Running 3 week functional medicine d e tox and then heavy metal detox. I am coordinating with a iaomt dentist, what else would you do knowing that I would like to get pregnant in the future.   Nicole: If my son becomes a patient of yours, can you cure his EoE?   Kelsi: hi dr. cabral! have you heard of mucous membrane pemphigoid? i am asking on behalf of my dad who has been struggling with swollen lips, lesions on the inner bottom lip and extreme sensitivity to anything citric/acidic based. he was referred to a specialty dermatologist by our amazing biological dentist. any additional info, things to do/avoid would be awesome. thank you.   Thank you for tuning into this weekend's Cabral HouseCalls and be sure to check back tomorrow for our Mindset & Motivation Monday show to get your week started off right! - - - Show Notes and Resources: StephenCabral.com/2949 - - - Get a FREE Copy of Dr. Cabral's Book: The Rain Barrel Effect - - - Join the Community & Get Your Questions Answered: CabralSupportGroup.com - - - Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - Get Your Question Answered On An Upcoming HouseCall: StephenCabral.com/askcabral - - - Would You Take 30 Seconds To Rate & Review The Cabral Concept? The best way to help me spread our mission of true natural health is to pass on the good word, and I read and appreciate every review!