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72 episodes with missed diagnosis
17 episodes with missed diagnosis
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In this episode, we explore the critical role nurses play in advancing health equity within the ICU. Jennifer Adamski, president of the American Association of Critical-Care Nurses, shares insights on how nurses can make a difference at the bedside and the challenges they face. We also discuss strategies for empowering nurses and fostering a culture of equity in critical care.This episode is sponsored by Medtronic.Areia C, King E, Ede J, Young L, Tarassenko L, Watkinson P, Vollam S. Experiences of current vital signs monitoring practices and views of wearable monitoring: A qualitative study in patients and nurses. Journal of advanced nursing. 2022 Mar;78(3):810-22Williams EC, Polito V. Meditation in the Workplace: Does Mindfulness Reduce Bias and Increase Organisational Citizenship Behaviours? Front Psychol. 2022 Apr 11;13:747983. doi: 10.3389/fpsyg.2022.747983. PMID: 35478759; PMCID: PMC9035788.Lewis CL, Yan A, Williams MY, Apen LV, Crawford CL, Morse L, Valdez AM, Alexander GR, Grant E, Valderama-Wallace C, Beatty D. Health equity: A concept analysis. Nurs Outlook. 2023 Sep-Oct;71(5):102032. doi: 10.1016/j.outlook.2023.102032. Epub 2023 Sep 6. PMID: 37683597.Bhavani SV, Wiley Z, Verhoef PA, Coopersmith CM, Ofotokun I. Racial Differences in Detection of Fever Using Temporal vs Oral Temperature Measurements in Hospitalized Patients. JAMA. 2022;328(9):885–886. doi:10.1001/jama.2022.12290P Malhotra, L Shaw, J Barnett, E Hayter, N Hill, P Stockton. St Helens and Knowsley. P179 Patient safety alert: a prospective study on 100 patients highlighting inaccuracy of pulse oximeter finger probes used on ear lobes. Teaching Hospitals NHS Trust, Prescot, UK. 10.1136/thorax-2018-212555.336Torp KD, Modi P, Pollard EJ, Simon LV. Pulse Oximetry. 2023 Jul 30. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan–. PMID: 29262014Nitzan M, Romem A, Koppel R. Pulse oximetry: fundamentals and technology update. Med Devices (Auckl). 2014 Jul 8;7:231-9. doi: 10.2147/MDER.S47319. PMID: 25031547; PMCID: PMC4099100Giuliano KK, Bilkovski RN, Beard J, Lamminmäki S. Comparative analysis of signal accuracy of three SpO2 monitors during motion and low perfusion conditions. J Clin Monit Comput. 2023 Dec;37(6):1451-1461. doi: 10.1007/s10877-023-01029-x. Epub 2023 Jun 2. PMID: 37266709; PMCID: PMC10651546Gudelunas MK, Lipnick M, Hendrickson C, et al. Low Perfusion and Missed Diagnosis of Hypoxemia by Pulse Oximetry in Darkly Pigmented Skin: A Prospective Study. Anesth Analg. 2024;138(3):552-561. doi:10.1213/ANE.0000000000006755
Once thought to be a male only disorder we know now that girls with ADHD are underdiagnosed. Without a diagnosis and the deep understanding that comes with it, many women with undiagnosed ADHD describe spending a lot of their lives feeling 'different', 'stupid', 'lazy' and 'careless' - not realising that their brain operates in a different way to many of those around them. Without the correct diagnosis and treatment, ADHD can greatly affect women's self-esteem, emotional wellbeing, professional life, relationships and parenting. This week's guest, Jane McFadden, knows this all too well. As a former psychologist diagnosed with ADHD in 2022, and later Autism in 2024, Jane founded ADHD Mums to help women feel validated, give them a sense of belonging to to empower them with everything they need to reduce suffering, understand and embrace who they are, learn the role of medication and thrive. Jane McFadden is an Autism Spectrum Disorder Clinical Specialist, Neuroscientist and Neurodivergence Assessor and Specialist living on the Sunshine Coast with her beautiful family including her three 'neurospicy' kids. www.adhdmums.com.auFB Group https://www.facebook.com/groups/777102743903210IG @adhd_mumsSee omnystudio.com/listener for privacy information.
It's TRENDING with Scott this week! He's wrangled the hosting duties from Luke and these are the topics he thinks you should know about: Selma Blair made an appearance at Paris Couture Fashion Week, highlighting her remission journey with MS. SHe has also spoken about how it took 15-20 years for her to recieved a formal diagnosis. This got Scott thinking: Do we need to listen to women when they say they're in pain (and yes, how revolutionary, two more men talking about this topic lol) A few months ago Instagram and Meta launched a game WITHIN your DMs. Scott has been wanting to talk about it for a while and Luke has been shutting him down. Well it's Scooters show today so we're talking about it baby. The U.S. Presidential debate has EVERYONE talking. Two old men struggling to string together an insult had Scott thinking: If Donald Trump wins, should the rest of the West put a bit of distance between ourselves and the so-called "Greatest Country in the World" Scott's Recommendations Watch Big Boys - Film https://bit.ly/bigboys-trailer . Watch Call Me By Your Name - Film https://bit.ly/callmebyyourname-trailer . Watch P Valley - Series - https://bit.ly/pvalley-trailer . Watch RuPaul's Drag Race - Series https://bit.ly/rupaulsdragrace-youtube . CREDITS: Hosts: Luke And Sassy Scott Executive Producer & Editor: Elise CooperSocial Producer: Amy CodeManaging Producer: Sam CavanaghTalent Manager: Kirsty KassabisSee omnystudio.com/listener for privacy information.
Welcome to Episode 36 of “The 2 View,” the podcast for EM and urgent care nurse practitioners and physician assistants! Show Notes for Episode 36 of “The 2 View” – Marijuana as a schedule III drug, treating sunburns and other skin problems, pulse oximetry and racial bias, and diagnosing lower UTIs. Marijuana as a schedule III drug Burton KW. The DEA Plans to Reschedule Marijuana: What Happens Next? Medscape: Emergency Medicine. Published May 2, 2024. Accessed May 10, 2024. https://www.medscape.com/viewarticle/dea-plans-reschedule-marijuana-what-happens-next-2024a10008ka?ecd=wnledittpal_etid6489685&uac=106964SV&impID=6489685 Dea.gov. DEA: United States Drug Enforcement Administration. Accessed May 10, 2024. https://www.dea.gov/drug-information/drug-scheduling Treating sunburns and other skin problems 12 Summer Skin Problems You Can Prevent. Aad.org. American Academy of Dermatology Association. Accessed May 10, 2024. https://www.aad.org/public/everyday-care/skin-care-secrets/routine/prevent-summer-skin-problems Benedetti J. Sunburn. Merck Manual Professional Edition. Reviewed/Revised Oct 2023. Accessed May 10, 2024. https://www.merckmanuals.com/professional/dermatologic-disorders/reactions-to-sunlight/sunburn Faurschou A, Wulf HC. Topical corticosteroids in the treatment of acute sunburn: A randomized, double-blind clinical trial. Arch Dermatol. PubMed. NIH: National Library of Medicine: National Center for Biotechnology Information. Published May 2008. Accessed May 10, 2024. https://pubmed.ncbi.nlm.nih.gov/18490588/ How to Treat Sunburn. Aad.org. American Academy of Dermatology Association. Accessed May 10, 2024. https://www.aad.org/public/everyday-care/injured-skin/burns/treat-sunburn Skowrońska W, Bazylko A. The Potential of Medicinal Plants and Natural Products in the Treatment of Burns and Sunburn—A Review. Pharmaceutics. PMC: PubMed Central. NIH: National Library of Medicine: National Center for Biotechnology Information. Published February 2023. Accessed May 10, 2024. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9958865/ Pulse oximetry and racial bias Gudelunas MK, Lipnick M, Hendrickson C, et al. Low Perfusion and Missed Diagnosis of Hypoxemia by Pulse Oximetry in Darkly Pigmented Skin: A Prospective Study. Anesth Analg. PubMed. NIH: National Library of Medicine: National Center for Biotechnology Information. Published March 1, 2024. Accessed May 10, 2024. https://pubmed.ncbi.nlm.nih.gov/38109495/ Valbuena VSM, Seelye S, Sjoding MW, et al. Racial bias and reproducibility in pulse oximetry among medical and surgical inpatients in general care in the Veterans Health Administration 2013-19: multicenter, retrospective cohort study. BMJ. Published July 6, 2022. Accessed May 10, 2024. https://www.bmj.com/content/378/bmj-2021-069775.long Diagnosing Lower UTIs Aydemir B, Overton D. Diagnosing Lower Urinary Tract Infections. ACEP Now: The Official Voice of Emergency Medicine. Published May 10, 2024. Accessed May 10, 2024. https://www.acepnow.com/article/diagnosing-lower-urinary-tract-infections/ Recurring Sources Center for Medical Education. Ccme.org. http://ccme.org The Proceduralist. Theproceduralist.org. http://www.theproceduralist.org The Procedural Pause. Emergency Medicine News. Lww.com. https://journals.lww.com/em-news/blog/theproceduralpause/pages/default.aspx The Skeptics Guide to Emergency Medicine. Thesgem.com. http://www.thesgem.com Trivia Question: Send answers to 2viewcast@gmail.com Be sure to keep tuning in for more great prizes and fun trivia questions! Once you hear the question, please email us your guesses at 2viewcast@gmail.com and tell us who you want to give a shout-out to. Be sure to listen in and see what we have to share!
Drs. Avery Tung and Philip Bickler discuss the article “Low Perfusion and Missed Diagnosis of Hypoxemia by Pulse Oximetry in Darkly Pigmented Skin: A Prospective Study” published in the March 2024 issue of Anesthesia & Analgesia.
Today you'll hear Jigyna Patel's story. She and I met recently at the PSI Conference, and I knew her perspective as a South Asian mom of Indian heritage would be valuable for listeners to hear. She's a Houston-area mother of three, and she is a passionate perinatal mental health advocate who loves her volunteer work with PSI. Join us to learn more! Show Highlights: Jigyna's story of her first pregnancy, nine years ago, which involved PCOS, infertility, emergency C-section, and a traumatic birth How Jigyna felt depression and disinterest in her new baby after taking her baby home to much help from family members, but felt much stigma and shame to get out of her “funk” How her symptoms progressed to anxiety, panic attacks, severe sleep deprivation, hallucinations, delusions, intrusive thoughts, and suicidal thoughts How she started the journey with a therapist, but eventually had to move with her baby into her parents' home for six weeks How medication, better sleep, journaling, and frequent walks helped Jigyna feel better and better over the next few months How Jigyna and her husband had conflicting opinions about having another baby How a second pregnancy (via another IUI) with twins (!) launched Jigyna into deep depression—until she decided to take charge and make a plan How the twins' birth was an amazing delivery, via C-section, and led to Jigyna's struggles with postpartum depression and anxiety–but none of the other symptoms from before Why Jigyna became active with PSI after researching and realizing that she had experienced postpartum psychosis with her first baby How Jigyna's Indian culture impacted her journey with pressure and stigma How she learned the value of sleep and took steps to prioritize her sleep and self-care as a mom of three Why she felt guilty for not “wanting” her pregnancy with her twins at first–and how her group support has shown that this is a common feeling for moms of multiples How Jigyna handled bonding and connecting issues with her babies Highlights of her current work with PSI Resources: Connect with Jigyna: Email Visit www.postpartum.net for resources and support! Visit www.postpartum.net/professionals/certificate-trainings/ for information on the grief course. Visit my website, www.wellmindperinatal.com, for more information, resources, and courses you can take today! Learn more about your ad choices. Visit megaphone.fm/adchoices
10/16/2023 | Missed Diagnosis in Body CT: Pearls and Pitfalls 2023 - Part 5
10/09/2023 | Missed Diagnosis in Body CT: Pearls and Pitfalls 2023 - Part 4
10/02/2023 | Missed Diagnosis in Body CT: Pearls and Pitfalls 2023 - Part 3
09/25/2023 | Missed Diagnosis in Body CT: Pearls and Pitfalls 2023 - Part 2
09/18/2023 | Missed Diagnosis in Body CT: Pearls and Pitfalls 2023 - Part 1
In the longest episode so far, things get real because I have had to work through the shock and joy and what-ifs and relief of what it means to be a woman with ADHD and finally receive the appropriate treatment for it. Better late than never..? x Lauren Blog: https://lmnpodcast.wixsite.com/lmnpodcast/post/doctors-missed-my-adhd-autism-audhd-for-12-years-an-essay Email: littlemissedneurodivergence@gmail.com Instagram: @littlemissedneurodivergence Patreon: patreon.com/LittleMissedNeurodivergence
Almost one in 18 people who visit an emergency department will not get a correct diagnosis, an Agency for Healthcare Research and Quality study led by David Newman-Toker at Johns Hopkins has found. Newman-Toker says there are things you can … How can you help yourself avoid a missed diagnosis when you go to the emergency department? Elizabeth Tracey reports Read More »
06/09/2022 | Missed Diagnosis on CT
Marcia Eckerd, Ph.D. is a licensed psychologist with over 30 years experience. She serves on the CT Autism Spectrum Disorder Advisory Council and the professional advisory boards of SmartKidsWithLD and NeuroClastic.com, a nonprofit providing creative educational resources on autism. She has a regular blog on Psychology Today, "Everyday Neurodiversity" as well as writing professional articles and articles for multiple websites and magazines, such as Autism Parenting Magazine and Thinking Person's Guide to Autism. She's spoken extensively for national and international autism conferences for educators, clinical professionals and parents. A former Director of Clinical Programs at the New Learning Therapy Center, she helped establish the Norwalk Hospital-Yale collaboration Pediatric Development and Therapy Center. She continues to be on the Associate Medical Staff at Norwalk Hospital. Marcia is also a contributor for Autism Parenting Magazine. Marcia trained extensively in multiple models of therapy including Cognitive Behavioral Therapy, neuropsychological evaluations, and mind-body medicine for children and adults. Listen to this inspiring Parenting With Impact episode with Marcia Eckerd, PhD. about the evolving understanding of autism in girls and how it is so often undiagnosed. Here is what to expect on this week's show: So much that we thought we knew about autism is not correct, especially in girls Masking and camouflaging help to make girls appear social to the average observer Girls can often not pick up on social cues, especially relating to sex and relationships Links Mentioned: https://researchautism.org/sex-ed-guide/ https://www.autismparentingmagazine.com/ Marcia's Blog https://www.marciaeckerd.com/new-page Download Marcia's Resource PDF Connect with Marcia: https://www.marciaeckerd.com/ Twitter https://twitter.com/docmarcia LinkedIn https://www.linkedin.com/in/meckerd09/ Top 12 Tips To Help Your Complex Kids Got complex kids? Yeah, so do we. Parenting a complex kid can be frustrating, overwhelming, and isolating. It can also be incredibly rewarding -- with the right help and guidance! This FREE insider's guide from the experts at ImpactParents includes our top 12 tips to help you create a calm, peaceful home and guide your kids to become more independent every day. Learn more about your ad choices. Visit megaphone.fm/adchoices
Thomas E. Brown, Ph.D., describes his work with high-IQ individuals who excelled early in school, but struggled academically and socially later in life. Many had unrecognized ADHD and autism, including signs formerly associated with Asperger syndrome.
04/12/2021 | Missed Diagnosis in Abdominal CT: Strategies and Pitfalls - Part 4
04/05/2021 | Missed Diagnosis in Abdominal CT: Strategies and Pitfalls - Part 3
03/29/2021 | Missed Diagnosis in Abdominal CT: Strategies and Pitfalls - Part 2
03/22/2021 | Missed Diagnosis in Abdominal CT: Strategies and Pitfalls - Part 1
If you have been diagnosed with Spondylolisthesis, you are going to want to listen to this episode. We talk more about unique, and often misdiagnosed back problems and what you can do to start healing your back problem so you can get back to doing what you love, without being hindered by this back problem. --- Send in a voice message: https://anchor.fm/david-middaugh/message
Janelle was diagnosed with MLH1-associated Lynch syndrome as a young adult. With a background in pre-med and public health, she has found it easier than some to navigate the healthcare system and make sure she is getting the screenings that she needs. But she has also run into a lot of ignorance and ageism along the way. Working in the field of oncology has also made it harder for her to keep her diagnosis compartmentalized, forcing her to confront it more often than she normally would at her age. Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show. Related Resources: Lynch Syndrome/HNPCC Facebook Support Group Lynch Syndrome Support Group / LSI Facebook Support Group FORCE Fight CRC Biomarked Related Grey Genetics News Corner blog posts: Why Have You Never Heard of Lynch Syndrome? What Can 23andme tell you about your colorectal cancer risk? Other Patient Stories episodes related to Lynch syndrome: She with Lynch - with Georgia Hurst Family Health History and a Missed Diagnosis of Lynch Syndrome - with Ann Jeffers Brown Living with Lynch Syndrome - with Melanie Breault Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Check out other Patient Stories podcast episodes. Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.
Growing up in the shadow of Cape Kennedy, Adin Burroughs had designs on becoming an astronaut. But When Adin’s body started rejecting any food he ate with cramps, fever, vomiting, diarrhea - he of course went to his doctor. In Adin’s family, a lot of people have problems with their gall bladder, and Adin told this to his doctor. The doctor ran some tests and declared Adin’s gall bladder as well functioning. But for the next few years Adin was not able to consume solid food and he lived on soup - all the while seeing numerous specialists in an effort to determine why his body was rejecting the foods he ate. During the worst periods, Adin would have 27 hours of cyclical vomiting in which he wished for the sweet release of death. As if this wasn’t bad enough, Adin also has the neurological disease of MEcfs and it keeps him bedridden half the time. In this interview, Adin and I also talk about the relationship between COVID and MEcfs, and how the pandemic may be the best thing to ever happen to MEcfs research funding, care and support. SHOW NOTES: 0:04:30 Adin was born in Orlando, Florida - his parents were rock music promoters - but his parents divorced a couple of years after Adin was born - his mother remarried, and his step father is a college professor of psychology 0:05:30 Adin was entralled with the nearby by rocket launches and had aims to be an astronaut - but his health came crasing down in 2003 - he had 3 jobs and was on Reserve Duty in New Mexico, and flying to the East Coast to write distributed simulations 0:06:30 Adin went to the UK to present to the United Nations and then flew home, staying awake for 72 hours - when he got home, his wife was volunteering and he went to help her all day, still no sleep - was awake for 96 hours - and picked up a flu bug with others in his social circle, and half got CFS 0:07:30 Adin never recovered, he had myalgic encephalomyelitis / chronic fatigue syndrome (ME/cfs) - Adin was admitted to the hospital with 105 degree temperature - they gave him chilled IVs - Adin's job was like an air traffic controller 0:08:30 About half the people who got the flu with Adin, did not recover, a well defined cluster for studying - but Adin's doctor just shrugged when Adin didn't recover - after initially getting sick, Adin mostly recovered and went back to work - but his temperature flipping around - in the Air Force office they took a thermometer and could see his temperature cycle from 96 to 102 in about 10 minutes - they sent him home 0:09:30 Adin's wife had to come with him to meet the top brass and help explain what was going on as Adin had developed aphasia (inability to recall words / speak) 0:10:30 They discovered that Adin's body couldn't control its temperature over 75 degrees, so he had to stay in an air conditioned bubble - his wife quit her job at the University of New Mexico to shuttle Adin to doctors - they thought he had cancer, but couldn't find it - Adin suffered with tachycardia and low blood oxygen saturation, same problem Covid patients are having 0:11:30 Adin saw many specialists - Adin takes a medication to slow down his heart rate - he takes more than people with heart failure - it took about a hear to see the 6 or 7 specialists - Adin's mom was diagnsoed with MEcfs in 1992, so he knew what the symptoms looked like 0:12:30 When Adin's body temperature was so erratice, he thought he may have MEcfs, but hoped it wasn't - Dr Nancy Klimas helped Adin's mom, and then Adin 0:13:30 Adin's wife started to show ME symptoms in 2009, after the birth of their son - she had mild symptoms as first, but in the last year she's gotten sicker - Adin is bed bound about half the time, his wife is bed bound about a 1/4 of the time - she's still in the 'push - crash' phase of exerting too much and then getting sicker and unconscious for 8 - 10 hours 0:14:30 About 1.5 years ago, their 10 year old son started to show ME symptoms - its hard for a kid: he goes to the playground, but then literally falls over when he gets home and sleeps until morning 0:15:30 It is hard for adults with ME to learn to not over exert so they don't get sicker, but kids are supposed to be running around - Adin has his son use a Virtual Reality (VR) machine for tai chi, meditation, etc 0:16:30 Adin also had another medical error: in late 2000s, the ME caused him severe gut problems, he couldn't eat solid food for about a year - Adin was retired from all 3 jobs, but his employers fought over paying Adin, and it was 3 years without pay 0:17:30 So they lost their house, they lost everything - they had some volunteer lawyers help - during this time, it didn't matter what Adin ate, he'd get stomach cramps, a fever, then vomiting and diarrhea 0:18:30 Many of Adin's family has gall bladder issues, and tells his doctor this - Adin does a 'fat challenge' (eat a high fat meal) but it had no effect - after 1-2 years, Adin finally got a referral to a specialist at a hospital 0:19:30 They did a simple sonogram of his abdomen including his liver, stomach and gall bladder - they said Adin's gall bladder was normal - so Adin's GP started barium enemas for lower GI testing - Adin said its some of the worse testing he's been through 0:20:30 It was painful because they filled his GI tract and put it under pressure to see how it would react - the tech performing the procedure complained the entire time that he was working 0:21:30 Adin had a lot of testing - endoscopies, colonoscopies, biopsies, food challenges - but the symptoms were only coming intermittently, and then it would be a 27 hour cycle where he literally wished for death 0:22:30 Adin was in the military, he's been in PoW camps, he knows what pain is like - Adin has a friend who has HIV, and she says it is nothing compared to the horror of ME - but Adin's attacks were lasting 27 hours, the best the doctors could do was give him some meds to control the vomiting and nausea 0:23:30 But Adin needed to take them at double or triple the max dose - Adin was experiencing cyclical vomiting, kicked off by the gall bladder attack, in conjuction with the autonomic dysfunction caused by ME 0:24:30 The high doses of those meds were just enough to stop Adin from killing himself to escape the pain and suffering - Adin had said to his wife that he couldn't live that way - the attacks would sometimes also induce tachycardia 0:25:30 Adin had to go to the ER a few times, but they didn't know how to treat him, his heart, his vomiting - they were scared they were going to lose him - finally, Adin's doctor suggested Adin see a Mayo specialist in cyclical vomiting syndrome 0:26:30 Adin's evaluation at The Mayo was unlike anything in the regular medial system - he saw 5 specialists a day for a week 0:27:30 Mayo said that Adin's gall bladder is sludge - it is fine sometimes, but other times fills with sludge - it was easy to see on a common test 0:28:30 If Adin's doctor had of done the test, it would have cut 2 years of living hell out of Adin's life - Mayo also suggested that Adin's underlying autonomic dysfunction should be looked into, and they had him meet another Mayo specialist - but Mayo would never say anything about Adin's ME, even though he'd been diagnosed by leading doctors and had objective results 0:29:30 Instead, Mayo would only refer to it as autonomic neuropathy, either central or peripheral - or they would break it down and call it 'post viral fatigue syndrome' - Adin was able to gather from speaking to the staff off the record, that the Mayo had a policy they wouldn't see a patient who had MEcfs 0:30:30 Adin thinks Mayo had the anti-ME policy because they didn't understand it, they didn't have a black and white test for it, and the expense - most people with MEcfs are unable to work 0:31:30 A doctor from the VA (Veterans Affairs) wouldn't permit Adin to have a cardiology test because he refused to do an exercise stress test (exercise is contraindicated for ME) - a psychologist told Adin that he was medicalizing psychological issues 0:32:30 Adin would ask the doctors straight up: 'do you think I'm depressed?' - he wanted them to look him in the eye - they'd say 'no, not depressed' - Adin would ask if it could be MEcfs, and they'd say 'yes', but didn't do anything about it - patients with ME are marginalized, psychologized and traumatized - they are refused services, ridiculed, accused of lying 0:33:30 Most doctors get stuck on looking for a horse, when ME is a zebra - another analogy is 5 blind men feeling an elephant, none of them has the big picture 0:34:30 Adin hopes that an outcome of Covid is a systems engineer approach, to take a look at the whole body - it seems self evident medicine should already be doing it 0:35:30 Covid may be the best thing to happen to ME research - Covid is a systemic infection, and a sign it is like ME 0:36:30 Unfortunately, there are going to be a lot of Covid survivors who will understand what ME patients have been going through - at least now doctors are realizing that an infection can impact multiple systems - doctors just couldn't wrap their heads around that - they think polio was a one off 0:37:30 ME was initially called atypical polio - in spite of many medical discoveries, our knowledge of the human body is embryonic - they are just discovering how metabolites impact human health 0:38:30 Scott says HIV is a walk in the park, but with ME he can't even walk in the park - for Adin, his friend with both HIV and ME saying that living with ME was multiple times harder 0:39:30 She had experienced multiple trauma, but none of it was from HIV, and she was around in the 80s - she was traumatized by how the medical system treated her ME 0:40:30 Scott says that 99% of people with HIV and access to meds, are healthier than 99% of people living with ME - it was surprising for Adin to learn that living with ME was so much worse than living with ME 0:41:30 For the last few years on May 12th, ME patients globally have used their empty shoes as a symbol of the 'millions missing' from life, work, play due to ME - now COVID patients who have not recovered are also displaying their shoes 0:42:30 Scott says what would also help ME research, is if celebrities and politicians got COVID and did not recover, but develop ME - some celebrities have ME, but they hide it - Cher considers herself recovered 0:43:30 Celebrities have done the exact opposite of what they needed to do - a famous soccer player got ME, but didn't want to help the community - when Adin was volunteering with Pheonix Rising (a forum for ME patients / caregivers), he met a number of writers who did not disclose their illness because it would impact their career 0:44:30 The exception is Seabiscuit author Laura HIllebrand - but most don't 'come out' to let the public know that ME is not rare 0:45:30 There are parallels between ME and HIV in regards to internalized shame - in the early days of AIDS, the slogan was "Silence = Death" - but with ME, there is no high body count, it makes people more susceptible to death by other illnesses - there has only been one case of a death listed as due to ME 0:46:30 If Adin's mom was to die today, ME wouldn't even be mentioned on her death certificate - the medical marginalization of ME is deeply buried in institutions - for Adin and his family, the quarantine has had no impact - it is the rest of the world that is adjusting 0:47:30 But they don't have the nausea, pain and suffering that people living with ME have - humans react very differently when things happen to them personally 0:48:30 Adin deeply hopes that COVID patients recover and that we learn a lot more about how viruses interact with the genome, metabolome, mitochondria - we'll see if the opportunity is squandered or not 0:49:30 Scott wonders if his HIV meds is why he's healthier than most people with ME - a doctor said that people with HIV and meds who got COVID were not getting as sick as people without HIV (and HIV meds) 0:50:30 Adin is hopeful for remdesivir for COVID - and that the FDA will do its job Connect with Adin: https://facebook.com/adindb https://twitter.com/adin Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.** Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com Scott Simpson: Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Ann Jeffers Brown has a total of fifteen years’ experience in both clinic and industry. In this episode, she shares a case from early in her career: a late diagnosis of Lynch syndrome. Her experience with a Lynch syndrome patient who missed out on the opportunity of potentially life-saving information, continues to motivate her to this day to spread awareness about the significance of cancer family history, the importance of recognizing patterns of hereditary cancer within a family, and the potential for diagnostic genetic testing to provide different and potentially life-saving medical care. Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show. Tools for Collecting Family Health History FamHis Surgeon General: My Family Health Portrait NIH: Families SHARE Family HealthLink TapGenes Links and Resources Grey Genetics News Corner blog post: Why Have You Never Heard of Lynch Syndrome? NSGC’s tool: Find a Genetic Counselor Schedule a genetic counseling appointment through Grey Genetics Order a family history review through Grey Genetics Connect with Ann on LinkedIn Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.
07/15/2019 | Missed Diagnosis in Body CT: Pearls and Pitfalls Part 3
07/08/2019 | Missed Diagnosis in Body CT: Pearls and Pitfalls Part 2
07/01/2019 | Missed Diagnosis in Body CT: Pearls and Pitfalls Part 1
What did we know about celiac disease in 1953? The truth is, we knew quite a bit about sensitivity to gluten 65 years ago when Matilda Babbitz’s son Bobby was diagnosed with celiac disease. A nurse by profession, Matilda carefully observed her baby and kept detailed records of his reactions to foods, working with doctors to determine an appropriate diet for Bobby. Today, the Gluten Free RN is sharing an article published in the March 1953 edition of the American Journal of Nursing written by Matilda herself. She covers how Bobby presented with celiac disease at six months of age and the dramatic change in his health and behavior after a diet change. Nadine discusses the systematic approach Bobby’s healthcare team took in creating a custom diet, the relationship between the baby’s irritability and his inability to digest food, and his growth and development before and after treatment. She also addresses the misunderstanding that children will ‘grow out of’ celiac disease, explaining that we’ve since learned patients must adhere to a 100% gluten-free diet for life. Listen in for insight around what we can learn from past case studies of celiac disease and understand what we already knew about celiac disease back when Eisenhower was president and Gentlemen Prefer Blondes was on the big screen! What’s Discussed: How Bobby presented with celiac disease at six months of age Sudden attack of diarrhea, upper respiratory infection History of GI difficulty + distended abdomen, increased gas Marked irritability, weight loss, inability to move arms/legs The dramatic change in Bobby’s behavior after a diet change Symptoms of diarrhea, vomiting and weakness disappeared Irritability subsided with shift to skim milk The new pediatrician’s approach when Bobby’s progress stalled Shift to goat’s milk, added complete multivitamin supplement The relationship between irritable behavior and the inability to digest foods Nurse/mom kept detailed records of foods eaten, reactions Bobby’s growth and development before and after diagnosis Lost ability to perform gross motor activity prior to diagnosis Caught up with age group after diet change (walked at 18 months) How Bobby’s mother dealt with social pressure to eat with others Replaced cookies and ice cream with sherbet and lollipops Kept away from parties so not conscious of being left out The chronic nature of celiac disease No one ‘grows out of’ being celiac 100% gluten-free diet for life Nadine’s insight around what we knew about celiac disease in 1953 Many celiac patients unable to digest cow’s milk Need supplementation with vitamins, certain fats Recognized impairment of immune system Resources ‘Bobby Has Celiac Disease’ in the American Journal of Nursing Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal Subscribe to The Gluten Free RN Podcast: iTunes Stitcher Google Play
‘Know your own truth and let that guide you.’ How do you cut through the noise and misinformation around gluten sensitivity and celiac disease in order to make the best choices for your health and happiness? By tapping into your intuition and asking WHY when the answers don’t feel right—and reaching out to the right people for support when you need it. Today, the Gluten Free RN is sharing her Top 10 Musings and Truths for health and wellbeing, empowering you to be self-protective and surround yourself with the people who genuinely care enough to speak up for—and with you. She shares the value in setting goals for your physical and mental health and taking your power back from the people who may have victimized you in the past. Nadine also encourages you to get educated and engage in critical thinking, questioning the information you are given and saying ‘no’ to anyone who suggests you eat gluten—even if they happen to be a doctor. Listen in to understand the idea that ‘you are your own experiment’ and learn to be the healthiest YOU you can be by committing to a 100% gluten-free diet! What’s Discussed: Commit to being 100% gluten-free, dairy-free and ideally Paleo Focus on diet change for first year so intestines can heal Be self-protective Lose people who aren’t supportive Find your tribe People who speak up for/with you, willing to change diet Set goals for what you want your life to look like Write down objectives to make real, move in that direction Be powerful (even if you don’t feel it) Speak up and take power back, don’t be victim Get educated and educate others Go to conferences, read and do research Don’t believe everything you hear, read or say Get answers to questions, then question the answers (ask WHY) Don’t eat gluten for anyone Not for friends/family, doctors or research study Be the healthiest YOU, you can be Strive for MORE health, fun, good food and information You are your own experiment Reassess and apply new information as needs change, work with team Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
Much existing propaganda claims that African Americans do not suffer from celiac disease. Even the Gluten Free RN was surprised to find out that her adopted daughter had a genetic predisposition to the disease back in 2006, as research available at the time regarded the HLA-DQ2 and HLA-DQ8 genes to be primarily Caucasian traits. And until we take steps to conduct a mass screening, we simply don’t know how common celiac disease is among people of African descent. Today, the Gluten Free RN is exploring celiac disease in the African American population. She covers a 2006 study out of Columbia University that assessed African American celiac patients, discussing the variety of ways the subjects presented with celiac disease and the potential reasons for their poor compliance with the prescribed gluten-free diet. Nadine also considers the prevalence of celiac disease on the continent of Africa, explaining why she believes the number of celiac patients will explode with the population’s growing exposure to wheat. Listen in for the Gluten Free RN’s insight on other health issues that may point to undiagnosed celiac disease and learn how we can prevent celiac disease among the African American population with access to testing, social support and gluten-free food! What’s Discussed: The 2006 Columbia University study of celiac disease in African Americans Identified nine patients with biopsy-proven celiac disease Presented with diarrhea, iron deficiency anemia and autoimmune disorders Why patients in the Columbia study demonstrated poor dietary compliance Expense, availability and palatability of gluten-free food Lack of symptoms at diagnosis, inaccurate dietary information Nadine’s prediction around the number of celiac patients in Africa Increasing exposure to wheat will cause explosion The statistics regarding the mortality burden of celiac disease Science Daily reported estimates of 42K child deaths every year in 2011 Majority from Africa and Asia The overlap between diabetes and celiac disease Every type 1 diabetic is HLA-DQ2/8 gene carrier The health issues that may indicate undiagnosed celiac disease Type 1 diabetes, cardiac issues, stroke and heart attack Obesity (stems from lack of nutrient absorption) How to prevent celiac disease among the African American population Access to testing, social support and gluten-free food Resources: Celiac Disease and How Gluten Affects Your Skin EP011 ‘Your Skin on Gluten’ on YouTube ‘Celiac Disease in African-Americans’ in Digestive Diseases and Sciences ‘First Global Estimates of Coeliac Disease and Its Mortality Burden’ in Science Daily Neurological Disorders Associated with Celiac Disease EP012 ‘Celiac Disease in the Developing Countries: A New and Challenging Public Health Problem’ in the World Journal of Gastroenterology ‘Systematic Review: Worldwide Variation in the Frequency of Coeliac Disease and Changes Over Time’ in Alimentary Pharmacology and Therapeutics ‘HLA Typing and Celiac Disease in Moroccans’ in Medical Sciences ‘A Historical Assessment of Sources and Uses of Wheat Varietal Innovations in South Africa’ in the South African Journal of Science University of Chicago: Celiac Disease Facts and Figures ‘Adult Coeliac Disease in South Africa: An Analysis of 20 Cases Emphasizing Atypical Presentations’ in the South African Medical Journal ‘Epidemiological and Clinical Features in Immigrant Children with Coeliac Disease: An Italian Multicentre Study’ in Digestive and Liver Disease ‘Prevalence of Positive Coeliac Serology in a Cohort of South African Children with Type 1 Diabetes Mellitus’ in the South African Journal of Child Health ESPGHAN Goes Africa Course Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
Approximately 50% of ER visits are associated with abdominal pain, and the vast majority of those patients are given a diagnosis of ‘abdominal pain of an unknown origin’ and directed to come back if the condition gets worse. This is little comfort to people suffering from severe discomfort who need answers around the cause of their belly pain, not just medication to mask it temporarily. Could undiagnosed celiac disease be the source of their suffering? Today, the Gluten Free RN is diving into the issue of belly pain and undiagnosed celiac disease, discussing the expensive testing often conducted to determine the cause of abdominal discomfort—testing that rarely includes a celiac panel. She covers several of the common misdiagnoses of celiac patients as well as the incredibly high prevalence of abdominal pain in children. Nadine shares the case study of a child-patient who was misdiagnosed with appendicitis and the research published in Digestive and Liver Disease outlining the unnecessary surgical interventions endured by undiagnosed celiac patients. Listen in for the Gluten Free RN’s advice to patients with idiopathic abdominal discomfort and learn why no one should suffer from belly pain! What’s Discussed: The statistics around ER visits and abdominal pain 50% of visits associated with belly pain The most common abdominal pain diagnoses Abdominal pain of unknown ideology, idiopathic abdominal pain How patients are treated for idiopathic abdominal pain Medication, directive to return if condition gets worse The testing to find the cause of chronic abdominal pain Expensive blood workups, rarely include celiac panel How many children suffer from belly pain 30% report abdominal discomfort Nadine’s patient who received a misdiagnosis of appendicitis Mother of child-patient sought second opinion prior to surgery Child didn’t have appendicitis, cause of pain still unknown A research study around abdominal surgery and celiac disease Patients with celiac disease at increased risk of abdominal surgery Misdiagnosis leads to inappropriate interventions (i.e.: appendectomy) Nadine’s advice for patients diagnosed with idiopathic abdominal pain Initiate clinical trail of gluten-free or Paleo diet Resources: ‘Increased Rate of Abdominal Surgery Both Before and After Diagnosis of Celiac Disease’ in Digestive and Liver Disease ‘Screening for Celiac Disease in Children with Recurrent Abdominal Pain’ in the Journal of Pediatric Gastroenterology and Nutrition ‘Effect of a Gluten-Free Diet on Gastrointestinal Symptoms in Celiac Disease’ in the American Journal of Clinical Nutrition ‘Clinical Features and Symptom Recovery on a Gluten-Free Diet in Canadian Adults with Celiac Disease’ in the Canadian Journal of Gastroenterology ‘Association of Adult Celiac Disease with Surgical Abdominal Pain’ in Annals of Surgery ‘A New Insight into Non-Specific Abdominal Pain’ in The Annals of The Royal College of Surgeons of England Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
If you are being treated for a blood disorder, it is time to look deeper and explore the underlying cause. Rather than simply addressing iron- or B12-deficiency anemia in isolation, ask WHY you have a deficiency in the first place. It is possible that damage to your intestines caused by gluten is preventing your body from absorbing the nutrients necessary to grow your red blood cells and keep your immune system healthy. And anemia is not the only blood disorder associated with celiac disease and non-celiac gluten sensitivity! The Gluten Free RN is taking a closer look at the hematologic manifestations of celiac disease from anemia to hyposplenism. She explains the connection between disorders of the blood and bones, offering insight around why men with both anemia and osteoporosis are also likely to have celiac disease. Nadine discusses the danger in taking H2 blockers or proton pump inhibitors for GERD long-term, describing how those medications decrease the gastric acid necessary for breaking down food. She also addresses what you can do to identify any nutritional deficiencies in your blood and reminds us why celiac patients have difficulty absorbing the nutrients necessary to form red blood cells. Listen in to understand how the skin reflects what’s happening internally and learn how to prevent a number of blood disorders with a gluten-free diet! What’s Discussed: The hematologic manifestations of celiac disease Anemia secondary to malabsorption of iron, folate and vitamin B12 Thrombocytosis, thrombocytopenia, leukopenia, venous thromboembolism Hyposplenism, IgA deficiency and increased risk of lymphoma Why iron supplements didn’t solve Nadine’s anemia Couldn’t absorb supplements due to undiagnosed celiac disease The connection between anemia, osteoporosis and celiac disease B12 forms red blood cells made in long bones The danger of taking H2 blockers and PPIs long-term Decreases levels of gastric acid necessary to liquify food Leads to bacterial overgrowth, gastritis How to uncover potential nutrient deficiencies in your blood CBC with differential (breakdown of red blood cells) The conclusions of the 2007 study in Blood Anemia and hyposplenism are most common complications of celiac disease Obtain small-bowel biopsy in all patients with iron-deficiency anemia The fat-soluble vitamins A, D, E and K Deficiency in one indicates malabsorption, potential celiac disease The connection between DH and celiac disease Skin disorders begin in intestines Resources: ‘Hematologic Manifestations of Celiac Disease’ in Blood Celiac Disease and Your Spleen Dr. Ben Lynch: Folic Acid vs. Folate ‘The Thrombophilic Network of Autoantibodies in Celiac Disease’ in BMC Medicine ‘Hematologic Manifestations of Celiac Disease’ in Celiac Disease— From Pathophysiology to Advanced Therapies ‘Sarcoidosis, Celiac Disease and Deep Venous Thrombosis: A Rare Association’ in Balkan Medical Journal ‘Celiac Disease Manifesting with Deep Venous Thrombosis: A Case Report’ in Govaresh ‘Deep Venous Thrombosis and Bilateral Pulmonary Embolism Revealing Silent Celiac Disease’ in Case Reports in Gastrointestinal Medicine ‘How Often Do Hematologists Consider Celiac Disease in Iron-Deficiency Anemia?’ in Clinical Advances in Hematology & Oncology ‘Deep Vein Thrombosis Associated with Celiac Disease’ in Bratislavske Lekarske Listy ‘Celiac Disease Presenting with Immune Thrombocytopenic Purpura’ in Case Reports in Hematology ‘Lower Extremity Deep Vein Thrombosis Associated with Gluten-Sensitivity Celiac Disease’ in Terapevticheskii Arkhiv Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
Your gastrointestinal tract is approximately 30 feet long, and it runs from your mouth all the way to the anus! We know that celiac disease can impact any part of the digestive tract. But there is another disease that wreaks havoc on the GI tract as well, a condition called eosinophilic esophagitis or EoE. The Gluten Free RN is explaining the fundamentals of eosinophilic esophagitis, from its characteristic inflammation of the esophagus and elevated eosinophils in the blood to the common symptoms of vomiting and upper abdominal pain. She walks us through the treatment for EoE, an elimination diet or steroid therapy. Nadine speaks to the research exploring a possible connection between eosinophilic esophagitis and celiac disease, citing a paper that found a higher prevalence of EoE in children with celiac disease than the general population as well as the case study of a woman with both celiac disease and elevated eosinophils in her blood. Listen in for the Gluten Free RN’s insight on the best EoE clinics and physicians in the country and learn why further study is needed around EoE and celiac disease! What’s Discussed: The fundamentals of eosinophilic esophagitis Allergic response to dietary antigens Causes inflammation of esophagus, increased eosinophils in blood The benefits of unsedated transnasal endoscopy for children with EoE Monitors esophageal mucosa without sedation Safer, faster and less costly Some common symptoms of eosinophilic esophagitis Vomiting, difficulty swallowing, food stuck in throat Chest pain, heartburn, upper abdominal pain The condition of achalasia Muscles of esophagus don’t work appropriately Causes spasms or constriction The treatment for EoE Elimination diet (remove wheat, eggs, milk, soy, shellfish and seafood, peanuts and tree nuts) Topical or systemic steroids The potential increased prevalence of EoE in children with celiac disease 2015 paper found prevalence of 10.7% (much higher than general population) Other research articles argue no increased prevalence of EoE in CD The case study of a 30-year-old woman with celiac disease and elevated eosinophils Presented with abdominal pain and distension, vomiting and frequent bowel movement Treated with IV hydrocortisone, but developed steroid induced psychosis Nadine’s insight on the best specialty clinics for EoE in the US University of Colorado (Denver School of Medicine) Pennsylvania Dr. Glenn Furuta’s insight on the difficulty of diagnosing EoE Relatively new disease, tendency to diagnose based on pathology report alone Elevated eosinophils also found in GERD, inflammatory bowel disease and celiac disease Special considerations for pediatric patients with EoE Consultation with dietician Limited exposure to corticosteroids Attention to development of feeding skills Potential psychosocial, behavioral problems Resources: ‘Unsedated Transnasal Esophagoscopy for Monitoring Therapy in Pediatric Eosinophilic Esophagitis’ in Gastrointestinal Endoscopy ‘Eosinophilic Esophagitis Associated with Celiac Disease in Children’ in BMC Research Notes ‘Eosinophilic Gastrointestinal Disorder in Coeliac Disease: A Case Report and Review’ in Case Reports in Gastrointestinal Medicine ‘Eosinophilic Esophagitis in Children and Adults’ in Gastroenterology and Hepatology ‘The Association Between Celiac Disease and Eosinophilic Esophagitis in Children and Adults’ in BMC Gastroenterology ‘Eosinophils in Gastrointestinal Disorders’ in Immunology and Allergy Clinics of North America ‘2013 Update on Celiac Disease and Eosinophilic Esophagitis’ in Nutrients ‘Eosinophilic Esophagitis: New Insights in Pathogenesis and Therapy’ in the World Journal of Gastrointestinal Pharmacology and Therapeutics ‘Incidence and Prevalence of Eosinophilic Esophagitis in Children’ in the Journal of Pediatric Gastroenterology and Nutrition ‘Management of Eosinophilic Esophagitis and Celiac Disease’ in Current Opinion in Pharmacology ‘Increased Risk of Esophageal Eosinophilia and Eosinophilic Esophagitis in Patients with Active Celiac Disease on Biopsy’ in Clinical Gastroenterology and Hepatology ‘Individuals Affected by Eosinophilic Gastrointestinal Disorders Have Complex Unmet Needs and Frequently Experience Unique Barriers to Care’ in Clinics and Research in Hepatology and Gastroenterology ‘Eosinophilic Esophagitis and Celiac Disease: A True Association or Coincidence?’ in the Journal of Pediatric Gastroenterology and Nutrition Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
If you’re just getting used to eliminating gluten from your diet, it may feel like a burden to remove dairy as well—especially if you’re a fan of comfort foods like cheese and ice cream. Why exactly do many practitioners recommend a gluten- AND dairy-free diet to patients diagnosed with celiac disease and non-celiac gluten sensitivity? The Gluten Free RN is walking us through the similarities between gliadin and casein, explaining how the proteins found in gluten, milk and cheese impact our brains. She discusses how Marsh 1 damage from celiac disease leads to an inability to break down the sugar in milk and why we crave the very foods that are making us sick. Nadine shares the story of a young man with autism whose health improved once his family went gluten-free, describing the well-documented gut-brain connection and how the right high-fat diet can repair the neurological system. Listen in for the Gluten Free RN’s insight around dairy replacement options and get empowered to reclaim your health with a gluten- and diary-free diet! What’s Discussed: The similarities between the gluten and casein proteins Molecularly very similar, bodies read as toxins Both capable of crossing blood-brain barrier How the casein protein impacts the brain Causes inflammation, hypoxia (decrease flow of oxygen) Brain fog, anxiety, depression, irritability and fatigue The effect of Marsh 1 damage due to celiac disease Microvilli damaged or destroyed Can’t produce enzymes that break down sugar in milk How gluten and casein proteins act as exorphins Bind with opium receptors in brain Crave foods that make us sick Nadine’s recommendations for dairy replacements Coconut, hemp, almond or hazelnut milk Kite Hill and NuCulture cheese options How a gluten-free diet helped a young man with autism More interaction with family, fewer GI issues High-fat diet repairs neurological system The story of Dr. Terry Wahls Diagnosed with MS, healed on gluten-free diet Resources: Aroy’d Coconut Milk Kite Hill NuCulture Foods Mary’s Gone Crackers Jilz Crackers Dr. Terry Wahls’ TED Talk The Wahls Protocol by Dr. Terry Wahls Dr. Terry Wahls’ Website Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
‘Globally, indigenous peoples suffer from poorer health, are more likely to experience disability and reduced quality of life, and ultimately die younger than their non-indigenous counterparts.’ A UN Report on the health of indigenous peoples points to a significant problem, but the question is WHY? Why are native populations more prone to autoimmune disorders and type 1 diabetes? Why do they have a higher incidence of alcoholism and drug addiction? And why the lower life expectancy? The Gluten Free RN is exploring the role of food in health outcomes for indigenous populations around the world. She begins with an explanation of the dietary differences between hunter-gatherer and agricultural societies, discussing how native populations were exposed to the gluten in grains only when European conquerors came to occupy their lands. Nadine shares her challenge in finding information about indigenous populations and celiac disease, explaining why further study is necessary. She speaks to the highly processed nature of the commodity foods provided to Native Americans in the US and the shortcomings of Canada’s Food Guide when it comes to the health of First Nations people. Listen in and learn the significance of educating indigenous populations around celiac disease and non-celiac gluten sensitivity, empowering those groups to make choices that will improve their health and quality of life! What’s Discussed: The global indigenous population 370M in 70-plus countries Rich diversity of cultures The health status of indigenous populations Higher incidence of autoimmune disorders, T1D Higher prevalence of addictive disorders, cardiovascular disease Lower life expectancy, increased morbidity/mortality Why indigenous populations have more health issues Access to health care, isolation and lifestyle Food (hunter-gatherer vs. agricultural society) The lack of information around indigenous populations and celiac disease Very few studies available The impact of grains on the native population Significant change in health care outcomes, quality of life The prevalence of celiac disease in indigenous populations At least 1%, likely 3% or higher No way to know without mass screening Why eating healthy is a challenge for the indigenous population Food scarcity, desserts Reliance on commodity foods provided by government The conclusions of the Prairie Nymph blog on Canada’s Food Guide Based on diet of European origins, doesn’t mention celiac disease Ignores health benefits of traditional diet for First Nations people Why it’s important to educate indigenous people around celiac disease Empower to make food choices with better health outcomes Resources: Guns, Germs, and Steel: The Fates of Human Societies by Jaren M. Diamond Dough Nation by Nadine Grzeskowiak USDA Commodity Supplemental Food Program ‘Canada’s Food Guide and Native Women’ by Prairie Nymph The Sioux Chef’s Indigenous Kitchen by Sean Sherman American Indian and Alaska Native Health ‘Celiac Disease: A Disorder Emerging from Antiquity, Its Evolving Classification and Risk, and Potential New Treatment Paradigms’ in Gut Liver ‘Celiac Disease: A Life-Changing Diagnosis’ in Indian Country Today ‘Government Food Boxes? It’s Nothing New for Native Americans’ on WDET UN Indigenous Peoples Fact Sheet ‘Many Native Americans Lack Access to Healthy Food, But There’s a Growing Movement to Change That’ in Grist ‘Characteristics and Factors Related to Quality of Life in Mexican Mestizo Patients with Celiac Disease’ in BMC Gastroenterology Summary of Aboriginal and Torres Strait Islander Health WHO Health of Indigenous Peoples WHO Indigenous Peoples and Substance Abuse Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
‘It’s too hard.’ ‘It’s too expensive.’ ‘It’s time-consuming.’ ‘My family won’t support me.’ There are lots of excuses why you can’t go gluten-free or Paleo, but the Gluten Free RN argues that if it’s hard, you’re doing it wrong. And today, she’s prepared to explain how to easily go gluten-free or Paleo and either maintain or regain your health. Nadine begins with a discussion of the connection between food and pain or discomfort. She explains how the processed, non-food that most people consume causes damage that prevents us from absorbing the nutrients our bodies need. She offers insight around where to go for gluten-free, organic food and how to jump-start a gluten-free or Paleo diet. The Gluten Free RN provides tips on taking control of your food choices, trying new foods, and gluten-free cooking—minus the cheap fillers. She also outlines a shopping list for nutrient-dense foods that will heal your leaky gut and feed your neurologic system. Listen in and learn the easy way to go gluten-free or Paleo and optimize your health! What’s Discussed: The value in recognizing how you feel Shouldn’t have pain, discomfort daily Underlying cause traced back to food Nadine’s response to excuses for not going gluten-free No more expensive, must buy food anyway Food is medicine, good choices can improve health How to avoid non-food with empty calories Stay away from soda, sugary coffees Pass up highly processed and fast non-food The difference between organic and conventional food Conventional food—herbicides, pesticides, genetically modified Roundup causes leaky gut, even in absence of celiac disease Nadine’s suggestions around where to go for gluten-free food Grocery stores that cater to gluten-free population Local food co-ops, farmers Nadine’s advice for going gluten-free or Paleo Try new foods in the produce section Learn to pack simple breakfast, lunch and dinner Consider putting in garden Get re-educated, take control of food choices Replace cutting boards, toasters, etc. How to get started on a gluten-free or Paleo diet Whole30 Program (eliminate grains, sugar and dairy) Nadine’s shopping list for a gluten-free diet Fruits and vegetables Nuts and seeds Meat, fish and eggs Resources: Whole Foods Natural Grocers Whole30 Midway Farms Whole30 Cookbooks Paleo Magazine Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
As stories about Russia continue to dominate the news cycle, you are probably familiar with the recent sanctions against the country, Vladimir Putin’s reelection, and even the expulsion of Russian diplomats from the EU and US. But what do you know about celiac disease in Russia? The Gluten Free RN is taking a closer look at the limited information about celiac disease in Russia, giving us an overview of the country’s size and population and the likely number of celiac cases based on the global tendency. She discusses the thriving wheat production industry in Russia as well as the gluten-containing traditional Russian diet. Nadine walks us through a presentation created by Dr. Elena Roslavtseva at the Scientific Center for Children’s Health in Moscow, sharing how the diagnoses of celiac disease changed from the 1970’s through the 2000’s, the inconsistencies with testing for celiac disease around the nation, and the challenges of maintaining a gluten-free diet in Russia. Listen in as the Gluten Free RN covers the Journal of Immunology Research’s overview of celiac disease in Russia, explaining why the reported frequency probably doesn’t reflect the true prevalence and the necessity of a mass screening. What’s Discussed: General information about the country of Russia Population of 144.3M Dual nation state, 185 ethnic groups Largest country by land mass Russia’s thriving wheat production industry Very high, exported to Middle East and Africa Ban on genetically modified wheat The first diagnoses of celiac disease in Russia Late 1970’s—1980’s Cases of severe malabsorption No gluten-free foods available How celiac diagnoses changed in the 2000’s Diagnosed more often, well-known in most regions Research done in many universities, med centers The Eastern European countries that have done mass screenings Romania, Slovakia, Slovenia, Estonia Why the data around celiac disease in Russia is unreliable Variation in how practitioners test for celiac disease Belarus—HLA-typing not available in most cases Latvia—mandatory screening for patients with IDDM and AIT The problems associated with celiac disease in Russia Unreliable data in absence of mass screening Gluten-containing traditional Russian food The overview presented in the Journal of Immunology Research Diagnostic tools for celiac disease in Russia vary significantly Reported frequency of 0.2-0.6%, but real rate unknown Resources: ‘Coeliac Disease and Gluten Related Disorders in Russia and Former Soviet Republics’ by Dr. Elena Roslavtseva ‘Overview of Celiac Disease in Russia: Regional Data and Estimated Prevalence’ in the Journal of Immunology Research ‘Russia, Argentina and Canada Displace US, Europe in Global Wheat Trade’ in agriCENSUS ‘Russian Wheat Sales Expand Global Reach with Surge in Sudan’ in Bloomberg ‘Russia’s Wheat Industry: Implications for Australia’ from the Australian Export Grains Innovation Centre ‘Growing Importance of Russian Milling Wheat Worldwide’ from Solaris Commodities ‘How an Oil Giant (Russia) Came to Dominate Wheat’ in Bloomberg ‘Celiac Disease in Russia and the Former Soviet Republics’ in The Celiac Scene Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
When faced with new information, it’s important to consider the source. Stop for a moment and examine whether the material is coming from someone with YOUR best interests at heart. The Gluten Free RN has just returned from the Colombia University Celiac Disease Conference, and she is breaking down the information presented to determine what’s useful—and what might be tainted by the pharmaceutical or food industry agenda. Nadine begins with a workshop led by General Mills that offered some questionable information about how grains are processed at their factories and a talk led by University of Chicago faculty on the topic of a gluten challenge. She also speaks to the differences between celiac management in the US and countries with universal healthcare like Italy and Australia. Nadine covers new testing that detects gluten exposure in stool or urine and what that reveals about the systemic nature of gluten damage as well as her take on practitioners who perpetuate the myth that grains are necessary and nutritious. Listen in for the Gluten Free RN’s insight around pharmaceutical treatments for celiac disease and the danger in volunteering for studies backed by drug companies. What’s Discussed: The two programs available at Colombia’s 2018 conference Clinical (nurses, RDs and laypeople) International (doctors, scientists, industry and VC) How celiac disease is managed in Italy Presentation by Dr. Carolina Ciacci Law mandates gluten-free options Nadine’s frustration with the General Mills presentation Major sponsor of conference Claim to separate grains at factory Nadine’s take on gluten-free Cheerios Should be avoided, not truly gluten-free Nadine’s confusion around Dr. Bana Jabri’s comments Wouldn’t put ‘potential celiac patient’ on gluten-containing diet Did not include patients with positive antibody test but negative biopsy Why the biopsy for celiac disease is problematic Only tests one foot into duodenum GI tract is 30 feet in length Nadine’s insight on a gluten-free challenge No possible benefit for patient Unnecessary, unethical The systemic nature of gluten damage New tests detect gluten exposure in stool, urine Urine test indicates passage through every system Nadine’s stance on pharmaceutical treatments for celiac disease No pill or vaccine will treat or cure CD Harmful to people in studies The myth that grains are necessary and nutritious Practitioners who perpetuate are ‘toeing company line’ Why it’s important to understand the source of your information Should be untainted by pharmaceutical money, agenda Australia’s requirements for gluten-free food Standard of less than 3 ppm Resources: Celiac Symposium Program Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Heal
To pierogi or not to pierogi… If you have celiac disease, there is no question that you should avoid anything made with flour or grains, no matter how delicious the dish may be. Although the Gluten Free RN has fond memories of her Polish grandmothers making traditional pastries, she contends that you don’t have to eat customary Polish food to celebrate your Polish heritage. In preparation for her upcoming trip to Warsaw in July, Nadine is taking a closer look at celiac disease in Poland. She discusses a 2009 study assessing the prevalence of celiac disease in Polish children, highlighting the asymptomatic and oligosymptomatic nature of the disease and explaining her own false negative test. Listen in for the Gluten Free RN’s insight around preparing for a trip to Poland, including research on the available gluten-free food and adult beverages! What’s Discussed: Why Nadine is concerned about her upcoming trip to Poland Flour, grains used in cooking and baking Nadine’s Polish heritage Fond memories of grandmothers making pierogi, pastries The 2009 study of celiac disease in Poland Assessed prevalence in children, only screened for IgA EmA, IgG EmA 3,235 children in Bydgoszcz tested, 25 identified (seven with Marsh III) Predominantly asymptomatic or oligosymptomatic Nadine’s genetic predisposition for celiac disease HLA-DQ2.5 homozygous How Nadine is preparing for travel in Poland Aware of Polish translations for gluten-free, celiac (bezglutenowe, trzewny) Take ‘rescue food’ for emergencies The prevalence of celiac disease in Poland 1:100 (matches worldwide estimate) The gluten-free alcoholic beverages available in Poland Potato vodka, honey mead Nadine’s caution against eating bread in Europe Wheat, grain causes damage regardless of location The overlap between autoimmune and celiac disease CD is grossly unrecognized, underdiagnosed Nadine’s suggested diet for celiac patients Meat, fish and eggs Nuts and seeds Fruits and vegetables Resources: NIH Consensus Development Conference on Celiac Disease ‘Screening for Celiac Disease in Poland’ in the Medical Science Monitor Gluten-Free Globetrotter Blog on Poland Gluten-Free Travel in Poland—Coeliac Youth of Europe Poland Travel Guide—Coeliac UK ‘Graves’ Disease, Celiac Disease and Liver Function Abnormalities in a Patient—Clinical Manifestation and Diagnostic Difficulties’ in ACTA Biochimica Polonica ‘Neuropsychiatric Symptoms and Celiac Disease’ in Neuropsychiatric Disease and Treatment ‘Evaluation of HLA-DQ2/DQ8 Genotype in Patients with Celiac Disease Hospitalised in 2012 at the Department of Paediatrics’ in Przeglad Gastroenterologiczny For Visitors with Coeliac Disease—Polskie Stowarzyszenie Osob z Celiakia i na Diecie Bezglutenowej Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
The Irish are known for being lucky… But does that luck hold out when it comes to celiac disease? The prevalence of celiac disease among the Iris is 1:100, about the same as the rest of the world. And if you are a redhead of Irish descent, there is a good chance that you are an HLA-DQ2 or HLA-DQ8 gene carrier. Today, the Gluten Free RN explores Irish ancestry and celiac disease, discussing how the Potato Famine led to a change in diet for much of the surviving population. She walks us through a paper published by Irish College of General Practitioners explaining the clinical presentations and complications of celiac disease. Nadine shares her experience running the Dublin marathon and the health consequences she suffered after touring the Guinness brewery. Listen in to understand the work of the Coeliac Society of Ireland and learn about the trends in celiac disease among the Irish. What’s Discussed: Why red hair is associated with celiac disease Tend to be HLA-DQ2 and/or HLA-DQ8 gene carriers The prevalence of celiac disease in Irish Setters Do much better on a gluten-free/Paleo diet The Irish Potato Famine Potato-based diet, little access to grains Famine from 1845-1849 One million died, many emigrated The myth that celiac disease is more prevalent in Europe than the US 30-50% of the population carries HLA-DQ2, HLA-DQ8 gene The myth that women are more susceptible to celiac disease Statistics don’t support this belief The Irish College of General Practitioners paper on celiac disease Clinical presentations, complications of celiac disease Conditions associated with increased prevalence The prevalence of celiac disease in Ireland 1:100 (matches rest of world) The appropriate testing for celiac disease and NCGS Blood test for total IgA/IgG, DGP and AGA Nadine’s experience running the Dublin marathon in 1998 Extreme edema in lower extremities The information provided by the Coeliac Society of Ireland Health ramifications of undiagnosed CD Average duration from symptoms to diagnosis (nine months) Resources: ‘Gluten-Sensitive Enteropathy in a Family of Irish Setters’ in The Canadian Veterinary Journal ‘Diagnosis and Management of Adult Coeliac Disease’ in ICGP Coeliac Society of Ireland ‘Prevalence and Incidence of Celiac Disease in Edinburgh and the Lothian Region of Scotland’ in Gastroenterology ‘Prevalence and Diagnosis’ by the Coeliac Society of Ireland ‘Coeliac Disease in Europe’ in Alimentary Pharmacology & Therapeutics ‘Escalation in the Amount of Adults Diagnosed with Coeliac Disease’ in Lifestyle Health ‘Gluten-Free Foods’ by the Food Safety Authority of Ireland ‘How Irish Diets of the Past Affect the Present’ in The Irish Times ‘Changes in Presentation of Celiac Disease in Ireland from the 1960s to 2015’ in Clinical Gastroenterology and Hepatology ‘Coeliac Disease: A Personal Perspective’ in Irish Health ‘Coeliac Disease: More Common Than You Think in Irish Health ‘Pathology and Management of Coeliac Disease’ by the Dublin Academic Medical Centre & UCD Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
It goes without saying that anyone who serves in the military needs to be healthy and strong—and that military leaders have an obligation to keep enlisted servicemen and women as safe and healthy as possible. So, it makes sense that people with food allergies (including celiac patients) are disqualified from military service, but it is less clear why celiac testing is not a part of the medical exam to qualify for enlistment. Today, the Gluten Free RN addresses the issue of celiac disease in the military. She explains the challenges of preparing gluten-free food in a mess hall setting and describes the consequences for an active duty soldier who is found to have celiac disease. Nadine shares a research study exploring celiac trends among active duty military as well as a case study around veterans and celiac disease. Listen in for insight on what’s behind the increased prevalence of celiac disease among military personnel and the confirmed association between celiac disease and other complex health issues. What’s Discussed: Why celiac patients are disqualified from enlisting in any branch of service Unable to provide safe food What happens to military personnel who are found to have celiac disease Will receive medical discharge The US military policy around food allergies and intolerances No accommodations made Countries that allow celiac patients to serve Israel, Finland and Scandinavia The Mayo Clinic study of celiac trends among active duty military Healthy worker population with medical diagnostic coding Incidence of celiac disease increased five-fold from 1999-2008 Combination of increased suspicion and environmental factors The challenge of preparing gluten-free food in a military setting High risk of cross-contamination A case study involving military veterans and celiac disease Confirmed association between CD and other complex issues The benefits of a gluten-free diet Preventative for autoimmune disorders, nutritional deficiencies and cancer Nadine’s argument for celiac testing prior to enlistment Obligation to safety of servicemen/women Resources: Military Standards of Medical Fitness ‘The Incidence and Risk of Celiac Disease in a Healthy US Adult Population’ in the American Journal of Gastroenterology ‘Celiac Sprue Among US Military Veterans: Associated Disorders and Clinical Manifestations’ in Digestive Diseases and Sciences ‘Gluten-Free Soldier in Afghanistan’ in Gluten-Free Living ‘Medical Mix-Up Sidelines Army Sergeant’s Career’ in Military Times Celiac Disease-Related Veterans Affairs Case Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
We get vaccinated to protect ourselves, to gain an immunity to a particular disease. But in the case of hepatitis B, celiac patients may come to find out that we are NOT immune—despite having done the right thing in getting a hepatitis B vaccination. Today, the Gluten Free RN is walking us through the latest research around vaccination and celiac disease. She explores the fact that celiac patients are more likely to be non-responsive to HBV than the general population, explaining the fundamentals of hepatitis B and the two main theories as to why the vaccine doesn’t work for some celiac patients. Nadine shares her take on immunizations, explaining why she is a proponent of an alternate vaccination schedule for infants who may be immunocompromised. Listen in and learn how to determine whether you are truly immune to hepatitis B and protect yourself from potentially life-threatening disease! What’s Discussed: The basics of hepatitis B (HBV) Viral infection that attacks liver Transmitted through blood, body fluids The prevalence of hepatitis B 257M people infected 887K deaths in 2015 The 2013 Italian study around celiac disease and the hepatitis B vaccine Number of non-responders to vaccine higher in CD patients May be genetic OR caused by gluten intake during vaccination Nadine’s experience with vaccination as a child Contracted mumps despite MMR Nadine’s take on vaccination Advocates for immunization to prevent disease Giving babies multiple vaccines at once may not be best The conclusion of a 2017 Italian study Administer booster shots of hepatitis B vaccine as needed Evaluate response to vaccine in newly diagnosed celiac patients Revaccinate one year after adoption of gluten-free diet The value of a hepatitis B titer Confirms whether really immune If not, test for celiac disease Resources: ‘Hepatitis B Vaccine in Celiac Disease: Yesterday, Today and Tomorrow in the World Journal of Gastroenterology ‘Vaccinations in Celiac Disease’ in the Journal of Pediatric Gastroenterology and Nutrition ‘Immune Response to Vaccines in Children with Celiac Disease’ in the World Journal of Gastroenterology ‘Immune Response to Hepatitis B Vaccine in Patients with Celiac Disease: A Systematic Review and Met-Analysis’ in Human Vaccines and Immunotherapeutics ‘Early Vaccinations are Not Risk Factors for Celiac Disease’ in Pediatrics ‘Gluten Intake Interferes with the Humoral Immune Response to Recombinant Hepatitis B Vaccine in Patients with Celiac Disease’ in Pediatrics ‘Effect of Pentavac and Measles-Mumps-Rubella (MMR) Vaccination on the Intestine’ in Gut ‘Normal of Defective Immune Response to Hepatitis B Vaccine in Patients with Diabetes and Celiac Disease’ in Human Vaccines and Immunotherapeutics Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
When the Gluten Free RN went on a gluten-free diet 11 years ago, her thyroid settled down and the associated symptoms and disorders—Graves’ disease, weight gain and hair loss—resolved. But when Nadine was inadvertently hit with gluten two years ago, several of those symptoms returned, along with a few new ones. She was losing hair and gaining water weight again. On top of that, her sinuses were congested. She developed asthma, a rash on her lower right leg and a scary case of pulmonary edema (excess fluid in the lungs). Hindsight being 20/20, Nadine realizes that her recent diagnosis of hypothyroidism is associated with that accidental gluten ingestion. Further study made it clear that there is a potential connection between her thyroid problems and pulmonary edema, as the leaky gut that comes with celiac disease can cause fluid shifts into body tissues. Today the Gluten Free RN explores the links among celiac disease, thyroid disorders and pulmonary edema. She explains the function of the endocrine system, the symptoms associated with hypothyroidism, and the diet she recommends for patients with thyroid issues. Listen in for Nadine’s insight around how gluten affects the thyroid gland and why the resulting low sodium levels might trigger edema in celiac patients. What’s Discussed: The function of the endocrine system Glands in body that make hormones The connection between celiac disease and thyroid disorders Thyroid especially vulnerable to gluten protein in wheat, barley, rye and oats Nadine’s symptoms of hypothyroidism Lower extremity edema Congested sinuses Hair falling out Pulmonary edema Asthma Rash on leg How damp rash lotion resolved Nadine’s symptoms Prescribed by acupuncturist in Chiang Mai Rash cleared, could breathe easy Symptoms returned within four weeks of return to US Nadine’s thyroid-stimulating hormone (TSH) levels Within normal limits despite thyroid issues Practitioner declined to order thyroid panel The relationship between thyroid issues and edema Sodium = major electrolyte, maintains body’s pH Hypothyroidism means low sodium levels Leaky gut of celiac disease leads to fluid shifts (edema) The research around thyroid disorders and celiac disease in Current Allergy and Asthma Reports Association between CD and thyroid disorders well documented Increased prevalence of autoimmune thyroiditis and Graves’ disease in celiac populations The diet Nadine recommends for celiac patients with potential thyroid issues Gluten-free, dairy-free Whole food, Paleo Why patients with unexplained pulmonary edema should be tested for celiac disease AND thyroid disorders Potential connection among all three The symptoms associated with hypothyroidism Puffy face, constipation, fatigue Muscle weakness, aches and pains Irregular, delayed menstrual periods Hair loss, thinning hair Slower heartrate, hypothermia Depression, memory problems Resources: ‘Pregnancy Complicated with Pulmonary Edema Due to Hyperthyroidism’ in the Journal of the Chinese Medical Association ‘Sleep Apnea, Hypothyroidism and Pulmonary Edema’ in CHEST Journal Letters to the Editor ‘Thyroid and Fluid Retention’ on the Wilson’s Syndrome Site ‘Acute Pulmonary Edema as a First Manifestation of Hyperthyroidism in a Pregnant Woman’ in Revista Medica de Chile ‘Hypothyroidism and Non-Cardiogenic Pulmonary Edema: Are We Missing Something Here?’ in Endocrinology, Diabetes & Metabolism Case Reports ‘Celiac Disease and Autoimmune Thyroid Disease’ in Clinical Medicine & Research ‘Celiac Disease and Autoimmunity: Review and Controversies’ in Current Allergy and Asthma Reports ‘An Unusual Cause of Flash Pulmonary Oedema’ in BMJ Case Reports ‘Challenges in the Management of a Patient with Myxoedema Coma in Ghana: A Case Report’ in Ghana Medical Journal ‘Hyponatremia and the Thyroid: Causality or Association?’ in the Journal of Clinical Medicine ‘Interactions Between Thyroid Disorders and Kidney Disease’ in the Indian Journal of Endocrinology and Metabolism Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
An estimated 50% of Americans are on some type of psychotropic drug. Half of the US population! What is causing such widespread prevalence of mental health disorders? Prescription anti-depressants and sedatives don’t solve the underlying problem… So how do we get to the bottom of this? The Gluten Free RN contends that there may be a connection between mental health and undiagnosed celiac disease. Today she explains how several disorders (anxiety, depression and paranoia, among others) have been linked to gluten, discussing how a leaky blood-brain barrier can lead to hypoxia, an inflammation of the brain. Nadine walks us through the best research in mental health disorders and gluten sensitivity, sharing two landmark studies that emphasize the gut/brain connection and characterize celiac disease as primarily a neurological disorder. Nadine offers her insight around working with schizophrenic patients and the increasing number of children suffering from anxiety. Listen in to understand how gluten impacts your mental health, and learn how to eliminate brain fog, get off prescription meds, and enjoy a higher quality of life! What’s Discussed: The connection between gluten and hypoxia Leaky blood-brain barrier leads to inflammation of brain, decreased oxygen flow The shocking statistics around Americans and psychotropic drugs Estimated 50% of US population on psychotropic medication The potential relationship between mental health disorders and undiagnosed celiac disease High instance of depression, anxiety, fatigue and paranoia May have difficulty sleeping, headaches or seizure disorder Nearly all experience brain fog The health consequences of undiagnosed celiac disease Malabsorption of nutrients Damaged immune system Neurological symptoms Hormonal imbalance Neurotransmitter disruption The findings of the landmark Cooke study in 1966 Ten of 16 patients with celiac disease had severe progressive neuropathy All 16 had severe malabsorption The conclusion of an editorial published in Neurology, Neurosurgery & Psychiatry Celiac disease, NCGS is primarily neurological How a gluten-free diet can resolve gastrointestinal and psychiatric symptoms Celiac disease can manifest as depression, anxiety or psychosis Research published in International Journal of Celiac Disease demonstrates gut/brain connection Nadine’s experience with schizophrenia patients Majority are gene positive for HLA-DQ2, HLA-DQ8 The increasing number of children diagnosed with anxiety disorder May be caused by undiagnosed sensitivity to gluten The concept of food as medicine Body may read gluten as toxic, must remove from diet Resources: ‘Gluten Sensitivity as a Neurological Illness’ in the Journal of Neurology, Neurosurgery & Psychiatry ‘Psychiatric Complications of Celiac Disease’ in the International Journal of Celiac Disease ‘Genetic Hypothesis of Idiopathic Schizophrenia: Its Exorphin Connection’ in Schizophrenia Bulletin ‘Markers of Gluten Sensitivity and Celiac Disease in Bipolar Disorder’ in Bipolar Disorders ‘Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity’ in Psychiatric Quarterly ‘Neuropsychiatric Symptoms and Celiac Disease’ in Neuropsychiatric Disease and Treatment Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
Two and a half years ago, Nadine was inadvertently hit with gluten—three times in a row. In the past, it had taken about ten weeks for her symptoms to resolve after an accidental exposure, but this time they stuck around. It started with feeling cold. Then she began experiencing abdominal distention and pain. Her dermatitis herpetiformis returned, she was plagued with sinus congestion, and she was gaining weight. Most concerning of all, she developed pulmonary edema, a condition caused by excess fluid in the lungs. Today, the Gluten Free RN is getting real, revealing the health struggles she has been dealing with since 2015. She explains the circumstances that led to her accidental gluten exposure and recounts the ten scary nights she spent in a recliner, forced to sit up in order to breathe. Nadine takes us along on her global search for the answers that began with a practitioner in Thailand and a tiny container of damp rash lotion, and ended with a diagnosis of myxedema from a naturopath here in the States. Nadine discusses how those three consecutive hits of gluten targeted her thyroid gland and how T3 is working to resolve her symptoms. Listen in and learn how the Gluten Free RN is reclaiming her Superwoman status and how you, too, can reach your full potential with good health and wellbeing! What’s Discussed: Maslow’s hierarchy of needs Physiological, safety needs must be taken care of first Difficult to achieve self-actualization with poor health Nadine’s health struggle the past 30 months Inadvertently hit with gluten three times in a row Symptoms persisted past usual ten weeks Sinus congestion, DH, pulmonary edema and weight gain Nadine’s search for the underlying cause Saw practitioner in Chiang Mai, damp rash lotion resolved symptoms Naturopath in Oregon diagnosed myxedema (hypothyroidism) How Nadine is reclaiming her health Taking T3 to resolve symptoms How a damaged thyroid gland impacted Nadine Affected sleep, ability to do challenging physical activity The importance of support in getting your health back Need relationships to support choices Resources: Whole30 Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
Celiac disease is messy. It can develop at any age, in any ethnicity, in both men and women, with any symptom or no symptom at all. Every patient is different, and each one presents differently. There is nothing cut and dried about celiac disease, except that a 100% gluten-free diet is necessary for healing. Nurses are in a unique position to make sense of this chaos and advocate for patients, recognizing possible celiac disease and non-celiac gluten sensitivity and recommending appropriate testing when necessary. Today, the Gluten Free RN covers the basics of celiac disease for nurses, explaining the frequency with which the disorder is misdiagnosed or goes undiagnosed for years. She walks us through the testing required for a diagnosis of celiac disease proper, who should undergo testing, and why one negative test doesn’t rule out the disease. Nadine speaks to the 300-plus signs of celiac disease, reviewing the most common symptoms and the overlap between celiac disease and autoimmune disorders like type 1 diabetes. She also shares the discouraging statistics around the impact of undiagnosed celiac disease on fetal development and maternal health. Listen in to understand why Nadine encourages fellow nurses include celiac disease as part of their differential diagnosis, providing gluten-sensitive patients with a safe, gluten-free environment and a higher quality of life! What’s Discussed: The frequency with which celiac disease is misdiagnosed or goes undiagnosed 94% of people with celiac disease are undiagnosed Current estimate is 3% of US population Takes average of 9-15 years for diagnosis The challenges around getting a diagnosis of celiac disease proper Requires genetic test, celiac antibody test and documented villous atrophy Celiac antibody test = 70% false negative in US The chronic nature of celiac disease Patients must go 100% gluten-free for life The 300-plus signs and symptoms of celiac disease Primarily a neurological disorder Why celiac patients must be tested for potential nutritional deficiencies May need B12, Mg RBC, D3, Zn or I supplements The detrimental impact of undiagnosed celiac disease on fetal development, maternal health 800-900% increase in miscarriage Increased risk of stillbirth, premature birth and neural defects Where gluten is hiding Medications, personal care products and food items Who should be tested for celiac disease Patients with mental health issues, developmental delays Anyone with an autoimmune disorder (e.g.: type 1 diabetes) Family members of celiac patients Why one negative test doesn’t rule out celiac disease Can seroconvert at any time How a gluten-free diet can benefit children with stunted growth Growth resumes if diagnosed before epiphyseal plates seal Resources: Celiac Disease and Non-Celiac Gluten Sensitivity for Nurses Recommended Labs Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders & Complications by Cleo J. Libonati Gluten Free Works PubMed Cyrex Labs Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
As we ring in the New Year, many of us take the time to jot down our aspirations for the next twelve months. What are your hopes and dreams for 2018? Health and happiness? An opportunity to travel? Stronger relationships? Whether you have big plans to hike the Grand Canyon this year, or you simply resolve to get a little more sleep, it’s likely that aspects of health and wellness are a big part of your vision for 2018. The Gluten Free RN wants you to be happy and healthy in the coming year, and today she is sharing her hopes and wishes around celiac disease for 2018. Nadine offers insight on taking control of what you can, including the food you eat. She shares her wish for widespread access to high-quality food and nutritional information that is NOT influenced by corporations. She explains the need for universal healthcare, better comprehensive testing for celiac disease (performed annually), and appropriate follow-up care for patients with a celiac diagnosis. Listen in to understand why Nadine advocates for a global celiac education campaign and learn how to evaluate new information about the disease with a critical ear. Let’s get happy and healthy in 2018 so that we can pursue all of our hopes and dreams! What’s Discussed: Nadine’s wish for health, happiness and wellness Reevaluate your choices and control what you can (sleep, food, activities) Why Nadine advocates for universal healthcare Everyone deserves access to high-quality healthcare without financial strain The need for better comprehensive testing Healthcare providers should be educated in ordering, interpreting labs Nadine’s hope for worldwide knowledge of celiac disease Patients in US not diagnosed correctly for 70 years Consider mini-mass screening of patients/family The importance of accurate media coverage Stories not influenced by sponsors, pharmaceuticals, etc. Why friends and family should be tested every year Early diagnosis important Can be ruled in, not ruled out The value of nutritional information not influenced by food companies Understand where food comes from, how processed Nadine’s aspiration for universal access to high-quality food Organic, whole foods with minimal processing Provides fuel today, building blocks of healing The need for appropriate follow-up care Labs to address nutritional deficiencies, associated issues Nadine’s insight around celiac education Seek information, evaluate with critical ear Resources: Rotten Documentary Trailer Whole30 Nadine’s Recommended Labs Columbia University Celiac Disease Center PALEOf(x) Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
In 11 years as the Gluten Free RN, Nadine has done an incredible amount of research on celiac disease and delivered more than 2,000 lectures. No question she is frustrated to see misinformation continue to make its way onto celiac support sites and Facebook groups. How does the average person sift through all the material that’s out there—material that may be influenced by corporations and pharmaceutical companies with a vested interest in the way celiac disease is perceived—to get to the most accurate information? Just in time for the holidays, the Gluten Free RN is sharing her wish list around the direction of celiac disease and non-celiac gluten sensitivity in the next ten years. She discusses the need for a global mass screening, explaining how celiac disease meets the World Health Organization’s criteria. She covers the reasons why pharmaceutical companies have no place in celiac research as well as the bad publicity the gluten-free community receives in the media. Nadine speaks to the grievous lack of education about celiac disease among healthcare providers and shares her hope for a cultural shift to support people on a gluten-free diet, explaining the role nurses can play in ending the needless suffering. She talks about why a gluten-free diet is NOT dangerous and how to make the best food choices based on your lifestyle and current situation. Listen in and get empowered to accept responsibility for your health! What’s Discussed: The need for a global mass screening Celiac disease meets WHO criteria 30-50% of population carries gene Why pharmaceutical companies should not be involved in celiac research Diet change resolves symptoms Pharmaceutical involvement gives false hope for cure The misinformation about celiac disease in the media Misrepresentation in recent episode of Freakonomics Radio The need to educate healthcare providers around celiac disease Recommended in 2004 NIH Consensus Statement Never happened in standardized form Nadine’s call for support of people on a gluten-free diet Don’t assume intentionally being difficult The unique position of nurses to use their influence Prevent needless suffering with understanding of celiac disease Why you must accept responsibility for your own health Take advantage of available resources Find practitioners open to other modalities How to avoid processed foods Focus on raw, whole foods Choose fresh fruits, vegetables Don’t fall victim to convenience marketing Use community, intuition to make decisions Why a gluten-free diet is NOT dangerous Nadine restored her health by eliminating grains Unethical to suggest that celiac patient go off gluten-free diet Resources: Freakonomics Radio: The Demonization of Gluten 2004 NIH Consensus Statement on Celiac Disease Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
You know that vitamin C is good for you. It is necessary for the growth, development and repair of all your body tissues, and it plays a role in the healthy functioning of your immune system. But evidence shows that the RDA—90mg for men and 75mg for women—may be woefully inadequate. And if you are suffering from certain types of cancer or sepsis, vitamin C may be the key to recovery. The Gluten Free RN is joined by vitamin C researcher Alex Michaels from the Linus Pauling Institute at Oregon State University to discuss the latest developments in vitamin C, explaining how intravenous vitamin C works to kill certain cancer cells and reverses the organ failure associated with sepsis. He also covers the difference between vitamin C inadequacy and vitamin C deficiency and the debilitating symptoms of scurvy. Nadine and Alex speak to the best food sources of vitamin C and how it impacts other vitamins and minerals like iron and copper. Alex offers his advice around how much vitamin C you should get on a daily basis and explains why synthetic and natural vitamin C are identical. Learn about the LPI mission to determine the optimal ranges of micronutrients and phytochemicals you should be getting on a daily basis and how you can benefit from their research! What’s Discussed: Micronutrients vs. macronutrients Micronutrients are vitamins, essential minerals needed in small amounts (milligrams or micrograms/day) Macronutrients include fats, carbs and proteins (grams/day) Phytochemicals come from plants, affect health but not essential nutrients The difference between intravenous and oral vitamin C Intravenous bypasses GI system, high concentration in bloodstream (up to 100 grams) Body can only absorb certain amount of oral vitamin C, inflammation may prevent absorption Vitamin C’s resurgence as a cancer therapy High levels of intravenous vitamin C can covert oxygen to hydrogen peroxide Hydrogen peroxide floods and kills some cancer cells (e.g.: pancreatic tumors) Vitamin C’s role in the treatment of sepsis Reverses organ failure, decreases inflammation May restore vitamin C to normal levels, protect from negative effects of iron The availability of intravenous vitamin C Difficult to obtain, naturopaths usually have dedicated supplier More readily available in Australia, New Zealand The fundamentals of scurvy Defined as deficiency in vitamin C Symptoms include bleeding gums, corkscrew hair growth, open wounds, malaise and low energy Very rare in western world, would have to go without any fruits or vegetables for months May have vitamin C inadequacy without any outward signs of problem The best food sources of vitamin C Chili peppers Tropical fruits (papayas, Kakadu plum, camu camu) Factors that are known to denigrate vitamin C Heat, light and air Mechanical disruption (i.e.: juicer) Basic pH (anything above 7) Enzymatic factors Iron, copper How vitamin C impacts other vitamins and minerals Enhances iron absorption, some must be careful of iron overload Synthetic vitamin C may deplete copper concentration Alex’s take on the appropriate daily intake of vitamin C 400 mg/day recommended RDA much too low Resources: Linus Pauling Institute Micronutrient Information Center LPI on Facebook LPI on Twitter LPI on LinkedIn LPI on Pinterest Biochemical, Physiological, and Molecular Aspects of Human Nutrition by Martha H. Stipanuk PhD and Marie A. Caudill Cancer and Vitamin C by Ewan Cameron and Linus Pauling Dr. Paul Marik on NPR Connect with Nadine: Instagram Facebook Contact via Email ‘Your Skin on Gluten’ on YouTube Melodies of the Danube Gluten-Free Cruise with Nadine Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
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