By American Partnership for Eosinophilic Disorders
4.9
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The podcast currently has 39 episodes available.
Description:
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. Priya Bansal about an allergist’s role in treating EoE.
In this episode, Ryan and Holly discuss with Dr. Priya Bansal her career in internal medicine, pediatrics, allergies, and immunology. She emphasizes the importance of patient advocacy and encourages parents to not accept the diagnosis that their child is a picky eater when the child is refusing food. Dr. Bansal talks about the process of reaching a diagnosis and EoE treatment options. Listen to this episode for more information about living with EoE and how an allergist can help.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:51] Ryan Piansky introduces the episode and co-host, Holly Knotowicz. Ryan and Holly will talk about eosinophilic esophagitis (EoE) and how an allergist can help.
[1:25] Holly introduces Dr. Priya Bansal, an internist, pediatrician, and allergist, who is on the faculty of Northwestern Feinberg School of Medicine and practices at the Asthma and Allergy Wellness Center in Illinois.
[2:06] Dr. Bansal does research and consulting and in a private practice. Throughout her 20-year career, she has enjoyed treating chronic and difficult-to-treat diseases.
[3:06] Now, she enjoys patient advocacy, advocating for EoE, and working with the American College of Allergy, Asthma, and Immunology House of Delegates and the American Academy of Allergy, Asthma, and Immunology.
[3:38] For new listeners, EoE is an allergic and immune disease of the esophagus. With EoE, eosinophils are found in the lining of the esophagus, causing inflammation, and inviting more eosinophils. EoE is a chronic inflammation of the esophagus.
[4:30] A child might have symptoms of food refusal, regurgitation, and abdominal pain. Adults may feel food sticking. The standard for finding eosinophils is endoscopy with six biopsies; two proximal, two mid, and two distal.
[5:24] It is a patchy disease, so the allergist will want to partner with a gastroenterologist who will do the biopsies at the three different levels.
[6:10] Holly tells how she didn’t get diagnosed until she was in her mid-twenties. Her doctors thought she was vomiting for attention. They were not familiar with EoE. She was diagnosed as an adult when working at a major hospital.
[7:00] An allergist at a big academic center, working together with a team of doctors from multiple disciplines, may find it easier to diagnose EoE. Many allergists are not working on multi-disciplinary teams.
[7:34] An allergist can look at the resources in the community. Dr. Bansal has several gastroenterology centers that refer patients to her. They partner with Dr. Bansal on the diagnosis and treatment.
[8:02] In other clinics, it may be the gastroenterologist who takes the lead in treatment and refers to the allergist to manage the allergic disease that exists on top of the EoE.
[8:21] As a patient, the diagnosis process depends on where you live. If you have symptoms, don’t give up. When Dr. Bansal started, she had to ask pathologists to stain biopsies for eosinophils. Today, staining is done routinely; she doesn’t need to ask for it.
[9:07] You are your best advocate. If somebody doesn’t believe you, that doesn't mean somebody else won’t.
[9:22] Holly is a feeding specialist in Maine. In the three years she has been there, more than 100 people whom she has referred have been diagnosed with EoE.
[10:24] Dr. Bansal says that whether you see an allergist or a GI doctor, depends on which specialty takes the lead on EoE in your community. If you do not have a good rapport with your doctor, make a change. Partner with a doctor who advocates for you.
[11:59] Dr. Bansal advises that when seeing a different doctor, to print out your biopsies to bring. If you are using a biologic therapy, print out the scope that you had right before your biologic therapy, too. That biopsy is your golden ticket if you switch insurance companies.
[13:02] Dr. Bansal uses Care Everywhere, but she wants to see prints of your labs anyway. Not everyone opts into Care Everywhere. She likes the Patient Portal and she is looking forward to someday having a universal portal.
[13:43] Dr. Bansal recommends patients sign up with the Portal for their allergist and GI doctor to facilitate communication.
[15:14] Patients can scan their printed scope reports and share them with their care team, such as by putting them on a keychain USB drive, in a photo album on a phone, or a scanning app on a phone. There are different ways to store the data.
[15:39] Ryan describes how his mother organized his medical history, including all prescriptions, every procedure he has had, and all the doctors he has seen. Ryan was diagnosed at two-and-a-half years old, after visits to six or seven doctors.
[17:30] Dr. Bansal participated in an ACAAI video about the difficulty of diagnosing EoE. The video is linked in the show notes.
[17:41] It is a challenge to diagnose EoE. Some children have milder forms of the disease. When it’s familial, some patients think it’s normal for the family. Food sticking is not normal for everyone.
[20:08] The patient may live in an area with a lack of access to a knowledgeable specialist. Sometimes the patient just doesn’t know who to see. When you make an appointment, call ahead and ask if they treat EoE at that office. Not all allergists do.
[22:18] A podcast episode with Dr. Emily McGowan told of her research study on the prevalence of EoE in urban vs. rural areas. It’s not about rural vs urban but about having access to a specialist. Rural patients couldn't find a specialist.
[22:44] Ryan notes that you can use the Specialist Finder at APFED.org/specialist to see if there is a specialist in your area.
[23:12] With younger patients, Dr. Bansal finds that food refusal is a sign of EoE; that, and abdominal pain. By age 10, patients can say they are having trouble swallowing or that food is getting stuck.
[24:28] Holly finds that pediatricians are often not aware that picky eating and food aversion or food refusal are different situations. Food aversion comes from painful swallowing. Dr. Bansal is trying to create an understanding of EoE among pediatricians.
[26:15] Another sign Dr. Bansal watches for is FIRE (Food-induced Immediate Response of the Esophagus), which is different from PFAS (Pollen Food Allergy Syndrome). FIRE is a narrowing of the esophagus; PFAS is an oral issue.
[27:13] As we get more research and learn more about the disease state and the nuances, the hope is that we could educate pediatricians on how to differentiate a picky eater from a patient with food aversion, using compensation mechanisms to swallow.
[28:15] Ryan compares this episode to a “greatest hits” episode, referring to FIRE and compensation mechanisms in the pediatric patient population. Those are great episodes for our listeners to go back and hear again.
[29:01] When a patient has an EoE diagnosis, Dr. Bansal practices shared decision-making with the patient. She outlines four options for the patient. The first option is eliminating dairy and known food allergens from the diet.
[31:01] With a food-elimination diet, ask your nutritionist what you need to eat more of because of the foods you are eliminating. If you’re taking away dairy, you want to make sure you’re getting calcium and Vitamin D. If you’re taking away wheat, you need zinc.
[31:20] The second option Dr. Bansal talks about with her patients is a high-dose proton pump inhibitor (PPI). The third option is topical budesonide, swallowed with honey. Budesonide is a 12-week prescription. Flovent can also be swallowed.
[32:46] The fourth option is dupilumab. Insurance companies may require you to fail option 2, the PPI, for eight to 12 weeks before paying for this.
[33:40] Dr. Bansal wants patients to understand that they can change between treatment options but she wants a patient to stay on an option for eight to 12 weeks and get a scope to see how it works before switching to another option. Follow-through is necessary.
[34:42] Listeners can watch the video of Dr. Jonathan Spergel’s presentation at EOS Connection 2024 to learn more about eliminating milk for EoE and PPI-responsive EoE patients.
[35:14] Dr. Spergel also touched on nutritional deficiencies from some diet therapies. APFED just recorded a great podcast episode on that, as well.
[35:31] Dr. Sara Bluestein made a presentation at EOS Connection on eosinophilic asthma which included an overview of biologic treatments, not just for EoE but for many eosinophilic disorders.
[36:09] Holly loves Dr. Bansal’s team approach with patients, where she acts as the coach, helping guide them toward the decision that will work best for their lives.
[36:20] As a feeding specialist, Holly is excited about the dupilumab option for patients who are on feeding tubes for severe inflammation in the esophagus.
[38:18] Budesonide oral is for 11 and up and dupilumab is for ages one and up. Any doctor who will give a patient the proper care may prescribe these to the patient. For dupilumab, the success rate goes up over time, starting at around 60% to around 80%.
[39:27] You want to get the biologic prescribed and approved for EoE. If it is approved for atopic dermatitis, the dosing is too weak for EoE and it fails at two-week dosing.
[39:56] Biologics need to be continued even when symptoms go away, as the symptoms will return. These two medicines are immunomodulators, not immunosuppressants so they don’t increase the risk of other diseases.
[41:50] Patients need biopsies to get therapy.
[42:13] Ryan reminds listeners about the trans-nasal endoscopy podcast episode and the episode on the string test, which don’t require sedation.
[43:06] Dr. Bansal notes that in trials, benralizumab failed as a treatment for EoE. It brought down the eosinophil count but it didn’t treat the patient’s dysphagia symptoms. Some specialists are wondering if there’s more to EoE than just the eosinophils.
[44:30] Mepolizumab also reduces eosinophils. It is not known if it is effective against EoE. Tezepelumab is undergoing EoE trials now. It reduces eosinophils in the first two weeks. The data is not out on its effectiveness as an EoE treatment.
[44:51] At EOS Connection 2024, Dr. Bluestein gave a great talk on eosinophilic asthma, including information about biologic treatments. More information is coming out about them and their trials for other eosinophilic diseases.
[45:27] Dr. Bansal talks about how great it is to have new biologic options for people who tried an elimination diet, PPIs, and budesonide without relief from dysphagia. There was a void in the space, which is what dupilumab filled.
[46:27] Allergists think that at least 70% of EoE patients have at least one other atopic disease, such as eczema, allergic rhinitis, polyps, or asthma. In pollen season some patients’ EoE gets worse.
[47:11] Dr. Bansal tells patients she doesn’t want them dripping and draining into the esophagus. She doesn’t want them to add inflammation where there is already inflammation. So she treats their allergies.
[47:44] After a dilation, a patient may feel cured. It’s just a stopgap; they’ll be back if they don’t treat their EoE. Dr. Bansal hopes that allergists treat any allergies as well as the EoE, so the allergies don’t have a negative impact on the EoE.
[49:41] There’s no harm in getting an evaluation and seeing if there is something you could be doing to minimize the overall disease impact on your body and keep you healthier overall. Inflammation anywhere is never a good thing.
[50:41] Ryan and Holly thank Dr. Bansal for joining the podcast today.
[51:01] Dr. Bansal’s last word: “I would advise parents to trust your instincts. If you think that something’s wrong, even if somebody’s telling you it’s not wrong, get to the right people. Some insurances allow you to make an allergist appointment without a referral.”
[52:18] If an allergist tells you there is a problem, know that they have years of experience with allergy patients. Dr. Bansal has hundreds of patients with EoE in the clinic. Create a partnership with an allergist.
[53:12] If you would like to learn more about EoE, please visit APFED.org/EOE. If you’re looking to find a specialist like Dr. Bansal, you can use APFED’s Specialist Finder at APFED.org/specialist.
[53:29] If you’d like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at APFED.org/connections.
[53:39] Ryan thanks Dr. Bansal again for joining us on Real Talk: Eosinophilic Diseases. Dr. Bansal thanks Ryan and Holly. Holly would like to clone Dr. Bansal with all her enthusiasm. Holly also thanks Education Partners, Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.
Mentioned in This Episode:
Priya Bansal M.D.Northwestern Feinberg School of Medicine
Rush University Medical Center
Care Everywhere
Video: Diagnosing and treating pediatric EoE, ACAAI
Video: Diagnosing and treating adult EoE, ACAAI
“One-food versus six-food diet elimination therapy for EoE…”, The Lancet
APFED EOS Connection Conference 2024
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
apfed.org/specialist
apfed.org/connections
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.
Tweetables:
“We have other things that we’re working with. We’re trying to find biomarkers and other tests that are not as invasive but for right now, it’s the endoscopy with six biopsies; two proximal, two mid, and two distal.” — Dr. Priya Bansal
“As we get more research and learn more and more about the disease state and the nuances and some of the things that we’re seeing, obviously then, the hope is that we could educate people.” — Dr. Priya Bansal
“You’ve got to have your biopsies. I know everyone hates them, everyone hates the scope, it’s uncomfortable, it’s annoying. I get it, but you need it to get therapy.” — Dr. Priya Bansal
Description:
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about the latest findings from the EGID Partners Registry.
In this episode, Ryan and Holly discuss with Dr. Elizabeth Jensen two studies drawn from data obtained by EGID Partners Registry questionnaires. One study focuses on extraintestinal pain experienced by patients living with EoE and other eosinophilic gastrointestinal disorders (EGIDs). The second study considers vitamin and iron deficiencies reported by patients living with EoE and other EGIDs. Dr. Jensen hints at connected research she would like to pursue next. Listen for more information about extraintestinal pain, vitamin deficiencies, EoE, and EGIDs.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:58] Ryan Piansky introduces the episode. He and co-host Holly Knotowicz will talk about the latest findings from the EGID Partners Registry.
[1:28] Holly introduces Dr. Elizabeth Jensen, an Associate Professor at the Wake Forest School of Medicine and an Adjunct Professor in the Department of Medicine at the University of North Carolina at Chapel Hill.
[1:58] Dr. Jensen has been working on research related to eosinophilic gastrointestinal diseases since she was in graduate school.
[2:11] Dr. Jensen’s background is in maternal and child health. She was interested in how early life exposures alter colonization of the gut microbiome and how that can lead to immune dysregulation.
[2:33] Dr. Jensen became interested in EoE and eosinophilic gastrointestinal diseases because her family members had been affected by these conditions and researchers knew next to nothing about the pathogenesis of these conditions.
[2:52] Dr. Jensen’s early research explored early life exposures that relate to the development of eosinophilic gastrointestinal diseases.
[3:02] That research paved the way for a variety of ongoing research studies in Denmark, the U.S., and through the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).
[3:30] The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or multiple ones.
[4:21] The registry is also for individuals who haven’t been diagnosed. The EGID Partners Registry gives a voice to individuals who are living with these conditions, in terms of directing where we go with research and asking patient-centered questions.
[4:58] To participate in the registry, go to EGIDPartners.org and register. Once you have registered you will receive a link to a questionnaire. The questionnaire can seem long.
[5:23] After the first questionnaire, the registry sometimes asks for updates to your baseline information and asks new questions that have been suggested by others.
[5:45] The EGID Partners Registry has a Scientific Advisory Committee, and patient advocacy groups, including APFED, physicians, and researchers, who direct where to go with the rich data that has been collected.
[6:07] Some of the questions are specific and asked by registry members with individual interests. Some of the questions are directed by input received by patient advocacy groups.
[6:48] After collecting these data, EGID Partners analyzes them and disseminates them by presenting them at meetings to get information to providers and individuals affected by these conditions.
[7:50] EGID Partners Registry did a study titled “Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases” and published a poster on it. They explored joint pain, leg pain, and headaches, to see if they were related to an eosinophilic condition.
[8:29] They studied pain severity and frequency as well as migraines. A high proportion of individuals reported pain. They studied those with EoE only and those with another EGID, including eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis.
[9:06] The second group included individuals with or without EoE. In general, patients who have one of these non-EoE EGIDS, with or without EoE, tend to experience more frequent pain and more severe pain.
[9:30] They’ve also seen that result in looking at other comorbidities. It reinforces the idea that patients who have multi-segmental EGIDs, or one of these lower EGIDS, tend to experience, on average, more severe extraintestinal symptoms.
[10:39] The three areas of pain highlighted on the poster were legs, joints, and headaches. This was based on feedback from patients saying, “This is what we’re experiencing, is it something that you could look into?”
[10:48] It doesn’t preclude the possibility that there may be other types of extraintestinal manifestations that we should be looking at in the future.
[11:27] This study by the EGID Partners Registry feels very impactful to Dr. Jensen. It brings awareness to some of the challenges that individuals with these conditions are experiencing. Holly points out it’s a way for patients to get access to experts.
[12:20] In this study, the EGID Partners Registry also looked at what proportion of individuals were taking either over-the-counter pain management medications or prescription medication. [12:39] About the migraine headache pain, most of it was over-the-counter use, although some reported prescription medication.
[12:54] Ryan grew up experiencing leg pain all the time. He attributed it to his other chronic disorders. It wasn’t until some years ago at an APFED conference that he heard a physician mention leg pain. Ryan had never considered it as an EoE symptom.
[13:38] One of the challenges the EGID Partners Registry has is that they don’t have enough individuals registered to start dividing the sample up further, by age. Roughly two-thirds of the respondents were adults.
[14:12] It’s also hard to get kids to report accurately what they are experiencing. It often comes down to the caregiver reporting it to the EGID Partners Registry, which brings its challenges.
[14:34] Ryan calls all patients listening to sign up with the EGID Partners Registry to allow the registry to get to some of these deeper questions.
[14:47] Dr. Jensen adds that people often want to understand why these pains are connected to EGIDs. EGID Partners Registry doesn’t know why.
[15:02] There are underlying biological processes that could potentially contribute to this observation of the increased prevalence of extraintestinal pain manifestations. In the EGID population, there is the enrichment of connective tissue disorders and more.
[15:36] There is also evidence that there are increased comorbidities associated with a more inflammatory milieu. That could contribute to these extraintestinal manifestations of pain.
[15:55] Dr. Jensen hopes to bring greater awareness to patients and providers, honoring what the patient is experiencing and digging a little deeper to understand what may be going on for this patient.
[16:17] EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs. They looked at those who had been diagnosed with EoE alone and those who had another EGID, with or without EoE.
[16:47] In this study, unlike with the pain manifestation, they didn’t see a statistically significant difference between EoE alone and the other EGIDs. There was some higher proportion in those with the lower EGIDs, but it didn’t reach statistical significance.
[17:16] They saw a high proportion reporting physician-diagnosed vitamin deficiency, mainly Vitamin D and a few others. That suggests the need to screen patients for vitamin deficiency with a new diagnosis and when monitoring response to therapy.
[18:28] There are reasons why there could be vitamin deficiencies. You may have a restrictive diet or be avoiding certain foods because you know they are going to bother you, or for the lower EGIDs, it may be that you’re experiencing malabsorption.
[19:04] Holly plans to send this study to the people she is working with. She will ask them to read it, and then work to get a baseline.
[19:56] A patient could ask for this test from any provider. Dr. Jensen says if it helps them to bring the evidence from these papers, that’s great; she hopes this empowers patients when they talk with their providers about the care that makes sense for them.
[20:41] EGID Partners Registry compared those reporting a deficiency between those with EoE alone and those without EoE. Eighty-two percent of those with EoE reported a Vitamin D deficiency. About a fourth of each group reported a B12 deficiency.
[21:27] Iron was another deficiency reported by 55% in the EoE group and 69% in the Non-EoE EGID group. Vitamins D and B12, and Iron were the top deficiencies reported. Many of the respondents reported they were taking vitamins or dietary supplements.
[22:32] Dr. Jensen thinks a nice follow-up study to this would be to learn the proportion of respondents taking vitamin injections or infusions because of malabsorption issues with oral supplements.
[22:37] Dr. Jensen thinks this study likely reflects an under-ascertainment of vitamin deficiency. A lot of patients aren’t getting screened. We don’t have the data yet because it’s not a universal recommendation to screen for vitamin deficiencies.
[23:01] Dr. Jensen thinks awareness and increased screening will be key. Then we can start thinking about how we mitigate this.
[23:24] Patients did not report symptoms of vitamin deficiencies. Dr. Jensen thinks that’s another good follow-up question. She stresses that it’s important to screen for deficiencies whether or not symptoms of deficiencies are present.
[24:06] Holly considers her patients with various symptoms of vitamin deficiencies and wants to get on the website and ask questions. Dr. Jensen tells her there is a link on the registry site where you can suggest a question. She asks Holly to suggest a question!
[24:30] Patients were asked if they have ever had a vitamin deficiency and were also asked if they currently take vitamins or supplements. A vitamin pill is one type of supplement.
[25:10] The study also looked at the use of a variety of complementary and alternative medicine approaches that patients turn to because they’re not getting adequate relief from traditional approaches to addressing their conditions.
[25:34] They saw a higher proportion of individuals with non-EoE EGIDs reporting the use of these kinds of alternative treatment approaches. Roughly a fourth of non-EoE EGID patients reported the use of a chiropractor, vs. 10% of EoE patients.
[26:11] Roughly one-fourth of non-EoE EGID patients reported turning to different herbal approaches in trying to get some relief for their conditions.
[26:49] Dr. Jensen says as a researcher, whenever she does a study, she is led to more questions. All of the research so far has opened the door to many more questions, including questions about individuals who don’t have either EoE or another EGID.
[27:20] Dr, Jensen wonders, is this extraintestinal pain unique to those who have EoE and non-EoE EGIDs? How do we best mitigate this? What does the workup look like for the patient coming in with joint pain or leg pain?
[27:37] How can we understand the factors that contribute to this pain? How do we get providers thinking about screening for vitamin deficiencies so we have a better understanding of their prevalence in this patient population?
[28:04] If patients are not absorbing vitamins orally, How do we mitigate this? How do we optimize their nutrition so they are not dealing with vitamin deficiencies which can lead to other consequences down the road?
[28:24] The surprises are always, “What doors are getting opened as a result?” We’ve answered some questions but there are so many questions that we still need to answer.
[28:56] Ryan asks if a correlation was found in these studies between vitamin deficiencies and extraintestinal pain. He notices that missing his vitamins correlates with more leg pain. Dr. Jensen asks Ryan to go onto the website and pose that question!
[29:10] Dr. Jensen has not looked at the data in that way but she thinks it would be an interesting way to bring these two studies together and try to explain some of what they are observing.
[29:21] Holly thanks Dr. Jensen for sharing her expertise and this fascinating research to help all EGID patients have less painful and better quality lives.
[29:52] Dr. Jensen makes this request. “Please consider checking out the EGID Partners Registry website, joining, learning more about how you can contribute to this research, and introducing questions.”
[30:04] “We’re always looking for new questions and are excited to think about how we can partner with patients in addressing questions that matter to them. Help us continue to answer some of these critical questions.”
[30:32] One topic Dr Jensen is interested in researching is the implications for reproductive health for having these conditions. Some research in another data source suggests potential implications.
[30:54] EGID Partners Registry observed and reported this year that there may be some indication of a longer time to pregnancy and a lower proportion of EGID patients experiencing a pregnancy. They want to look at that and understand it better.
[31:12] They want to understand it with more detail than they can get from the administrative data source with the initial questionnaire. EGID Partners Registry is pushing out a reproductive health history questionnaire now.
[31:29] EGID Partners Registry needs individuals to join and respond to the reproductive health questionnaire to help them understand this more deeply and some of the findings they are seeing initially in some of these other data sources.
[31:49] Ryan encourages listeners to learn more about Dr. Jensen’s research and EGID Partners Registry by visiting EGIDPartners.org. To learn more about eosinophilic gastrointestinal disorders, visit APFED.org/egids.
[32:13] To find a specialist in eosinophilic disorders, use APFED’s Specialist Finder at APFED.org/specialist. To connect with others impacted by eosinophilic diseases, join APFED’s online community on the Inspired network at APFED.org/connections.
[32:31] Ryan thanks Dr. Jensen for joining us on Real Talk. Dr. Jensen thanks Ryan and Holly for having her on the podcast to talk about this research. Holly also thanks Education Partners, GSK, Sanofi, and Regeneron for supporting this episode.
Mentioned in This Episode:
Dr. Elizabeth Jensen PhDAssociate Professor at Wake Forest University School of MedicineAdjunct Professor in the Department of Medicine at the UNC at Chapel Hill
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
EGID Partners Registry
Digestive Disease Week (DDW)
“Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases”
“Frequent Report Of Vitamin Deficiencies And Use Of Supplements And Complementary/Alternative Treatment Approaches In Patients With Eosinophilic Gastrointestinal Diseases” (EGIDPartners Registry)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
apfed.org/egids
apfed.org/specialist
apfed.org/connections
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of GSK, Sanofi, and Regeneron.
Tweetables:
“The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or with multiple ones.” — Dr. Elizabeth Jensen
“The EGID Partners Registry studied extraintestinal pain severity and frequency and migraines. There was a high proportion of individuals reporting experiencing pain.” — Dr. Elizabeth Jensen
“EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs.” — Dr. Elizabeth Jensen
“Is this unique to EoE and non-EoE EGIDs? … How do we best mitigate this for the patient who is coming in with joint pain or leg pain? What does the workup look like for those patients?” — Dr. Elizabeth Jensen
“The surprises are always, ‘What doors are getting opened as a result?’ We’ve answered some questions but there are so many questions that we still need to answer.” — Dr. Elizabeth Jensen
Description:
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, have a conversation about EOS Connection 2024, live at the conference.
In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder’s Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading. Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024. Listen in for more information about the EOS Connection 2024 conference.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:50] Ryan Piansky introduces the episode. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED’s annual patient education conference.
[1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder’s Award. It was a joy for Mary Jo to present the award to Ryan.
[1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They’ve known Beth for just as long. It was perfect.
[2:23] Ryan’s highlights of this year’s conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers.
[3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference.
[3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE?
[3:57] Ryan also says it’s interesting to hear. APFED doesn’t want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else.
[4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they’ve lived with symptoms for years, not knowing what it was, and now have a diagnosis.
[4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis).
[5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects.
[5:59] Mary Jo found Friday’s conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment.
[6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test.
[6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference.
[6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be.
[6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow.
[7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites.
[7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game.
[8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers.
[8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it’s not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, “Wow, you’re just like me!”
[8:46] For Ryan, it’s amazing that the conference can offer that environment for everybody. Ryan says it’s wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them.
[9:13] Many incredible volunteers came to help; Ryan mentions some by name. It’s wonderful that the conferences have been able to create such a tight-knit community for these patients.
[9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well.
[9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline’s advice that you may not be able to change the situation but you can change how you react to it. It’s important for children to learn and adults to remember; you are not your disease.
[10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you’re a kid first and then you also have to deal with allergies, medicines, and doctors’ appointments.
[10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity.
[10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness.
[10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability.
[11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation.
[11:47] You can find the new EGPA Toolkit at APFED.org.
[11:59] Ryan thinks it’s exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis.
[12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year.
[12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research.
[12:37] Mary Jo answers that’s why we call it EOS Connection! Ryan agrees; we’re making those patient connections even among these rare subsets.
[12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well. [12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit APFED.org/conference and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024.
[13:21] Ryan thanks our education partners for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event.
Mentioned in This Episode:
EOS Connection 2024 Conference
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
apfed.org/egids
apfed.org/specialist
apfed.org/connections
Tweetables:
“It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities.” — Ryan Piansky
“It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.” — Mary Jo Strobel
“We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org.” — Mary Jo Strobel
“It’s exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we’re able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.” — Ryan Piansky
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about artificial intelligence (AI) and patient education, with guest Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania.
In this episode, Ryan, Holly, and Dr. Ketchem discuss Dr. Ketchem’s interests, and his research into using an AI chatbot to provide patient education on eosinophilic gastrointestinal diseases. He shares, in broad terms, the methodology and conclusion of the research and what current and future research he is pursuing about using artificial intelligence to improve patient education and care.
Listen to this episode to learn about the current limitations and potential future benefits of using AI to help patients.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[1:17] Ryan Piansky and co-host Holly Knotowicz introduce the topic, artificial intelligence and patient education, and their guest, Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania.
[1:30] Dr. Corey Ketchem has an interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs), as well as artificial intelligence and epidemiologic studies.
[2:01] Dr. Ketchem did his residency at the University of Pennsylvania following medical school. There he met Dr. Evan Dellon, a world expert in EoE. Dr. Dellon became a mentor to Dr. Ketchem.
[2:24] As Dr. Ketchem learned more about EoE, he was fascinated by the many unknowns and opportunities for discovery within the eosinophilic GI field. He wanted to make an impact on patient care.
[2:51] Under Dr. Dellon’s mentorship, he did epidemiologic studies. Seeking specialized training, he ended up at the University of Pennsylvania where he is getting rigorous training in epidemiology to study EGIDs.
[3:18] As ChatGPT was gaining its buzz, Dr. Ketchem saw a lot of clinical applicability. He views AI as an asset in epidemiology and hopes to use it to accelerate his research.
[4:30] AI usually references using computers to mimic human abilities, estimate decisions, or predict outcomes. An example is Natural Language Processing (NLP), to analyze and understand human language. Large Language Models (LLM) use NLP.
[5:08] ChatGPT is based on a LLM. LLMs use NLP techniques to understand vast amounts of text that they are trained on and generate responses in a chat format.
[5:25] Machine learning is another subset of AI that uses statistical techniques to give computers the ability to learn with the data and predict outcomes.
[5:50] The hope is to use these AI techniques to speed up discovery and also minimize human expense or labor.
[6:28] Dr. Ketchem co-authored a paper in Clinical Gastroenterology and Hepatology about an AI chatbot and EoE. He had been inspired by a cardiology paper on whether ChatGPT would create accurate, appropriate answers about cardiology disease health.
[7:19] Dr. Ketchem wondered if ChatGPT could be applied to EoE education. He discussed it with Dr. Dellon and Dr. Krystle Lynch, Dr. Ketchem’s mentor at the University of Pennsylvania, and with Dr. Joy Chang, at the University of Michigan. They came up with a study design.
[8:06] The study asked ChatGPT questions about EoE, focusing on patient education and the therapeutics, and seeing if it gave accurate responses or not.
[8:45] The four doctors developed 40 questions that they gave ChatGPT as prompts and evaluated the responses. They proposed the questions in two ways: each question in an individual chat and 40 questions in a single chat.
[9:41] Analyzing the responses, the study demonstrated that ChatGPT responded with multiple inaccuracies to questions about EoE on general topics, complications, and management. Over half of the responses mixed correct and incorrect information.
[10:09] To evaluate the readability of the responses, the doctors used the Flesch-Kincaid reading ease tool. To understand the output from ChatGPT one would need high school and two years of college. That poses a potential health literacy barrier.
[11:40] The questions ranged from general: “What is eosinophilic esophagitis?”, to complications: “What is a food impaction?”, “What is a stricture?”, to therapeutics: “What are steroids for eosinophilic esophagitis?”, “Can I use a proton pump inhibitor for EoE?”
[12:15] It was not clear where ChatGPT pulled data from to respond to the questions. The data it was trained on was known to be in texts over a year old. Newer data may not have been accessible to ChatGPT.
[13:29] The doctors asked about things that were common knowledge in the eosinophilic GI realm, like dupilumab, and ChatGPT didn’t know much about it because it was a newer treatment option for EoE at the time of the study.
[13:42] The doctors scored the answers on their scientific accuracy and patient educational value. Simple questions got good responses. For questions about therapies and complications, “it wasn’t doing well.” They identified limitations to the study.
[14:14] The doctors asked ChatGPT if EoE is associated with cancer. From their best epidemiologic knowledge, the doctors don’t think that it is. ChatGPT falsely associated EoE with esophageal adenocarcinoma.
[14:34] ChatGPT also associated EoE with Barrett’s esophagus. To the doctors’ best epidemiologic data, they are not sure that there’s a connection.
[15:02] When the doctors asked the questions in individual chats, they asked ChatGPT for medical literature references for the information. It didn’t provide accurate references. Titles and authors were often incorrect and links often didn’t work.
[15:36] The incorrect references were a signal that ChatGPT wasn’t ready to answer complex medical questions. In the more updated versions of ChatGPT, instead of giving references, it says you should consult your doctor, which is the right thing to do.
[15:56] The researchers concluded that implementing this technology requires clinical oversight; it’s a tool that should be used with caution for patients in educating themselves and also from the perspective of a physician who is not an expert in EoE.
[16:29] Dr. Ketchem had been surprised by how long the responses were. He was expecting paragraphs but got pages and pages. He was also surprised by how quickly people were starting to use ChatGPT in other aspects of gastroenterology.
[16:57] While Dr. Ketchem and his team were writing the paper, another study came out about gastroesophageal reflux (GERD) that was somewhat similar to what Dr. Ketchem proposed for EoE. There is rapidly much being published about ChatGPT.
[17:14] Although the results were imperfect, there is potential applicability in patient-facing chats in the future for patient education but not yet there “for prime time.”
[18:33] These chats need to be transparent about where they’re getting data, especially in the medical field.
[18:41] There will always be a role for people in medicine. You can't replace a face-to-face connection with a nurse or a physician with a chat bot.
[19:11] Dr. Ketchem says everyone needs to be careful about using AI tools. He advises patients to always discuss any medical questions with their physician. AI tools are not yet able to provide accurate medical information all the time.
[19:50] Ryan reminds listeners that this podcast is for educational purposes. Always consult your physician before making any changes to your healthcare. If you ask ChatGPT, also consult with your doctor before making any changes to your healthcare.
[20:31] One of the problems with large language models is the potential for inaccuracy. Dr. Ketchem’s gold standard is the medical literature and you don’t know where the large language models are getting their information.
[21:04] Future benefits may include helping patients get answers quicker and becoming more educated. Dr. Ketchem hopes we will get to a point where we can trust these technologies and implement them safely.
[21:37] Government organizations like the National Institutes of Health (NIH) and the U.S. Food & Drug Administration (FDA) are bringing together experts to think about large language models and create regulatory frameworks for their use in healthcare. Dr. Ketchem tells how HIPAA (Health Insurance Portability and Accountability Act) rules are followed to protect patients.
[23:29] Dr. Ketchem sees potential in machine learning to predict which therapies an EoE patient will respond to. AI is also used in colonoscopies to identify hard-to-see polyps. It might be useful in endoscopies to see changes in the esophagus from EoE.
[24:35] AI image recognition could also be applied in pathology. Dr. Ketchem is interested in trying to apply it to work he wants to do in the long term. People are working with pathology specimens to automate the counting of eosinophils. Dr. Ketchem discusses the potential use of AI for epidemiology in pathology.
[25:43] Dr. Ketchem and Holly discuss the potential for using AI chatbots in medical screening questionnaires. There will always need to be a human element.
[27:57] Dr Ketchem speaks to the potential future development of educational videos prepared by AI. It is a complex scenario that would require a lot of training. If a camera is added, AI could analyze where patients are having problems in taking medications.
[29:55] Dr. Ketchem says there are many moving parts in healthcare and many stakeholders, making it difficult to implement AI. It could be used in many aspects, but its use must be safe. Dr. Ketchem thinks it will soon be useful in medical imaging.
[30:57] In the next decade, AI may be used in drug discovery, clinical decision-making, and healthcare administrative operations. The goal is to improve the care for the patient. Personalized care would be an aspirational goal of using artificial intelligence.
[31:29] Dr. Ketchem heard of a computer scientist at a government meeting suggesting a far-future scenario of doctors having digital versions of patients to test the patient’s reaction to a specific medication, based on comorbidities and other medications in use.
[32:30] Holly thanks Dr. Ketchem for sharing his research findings to help others.
[32:40] Dr. Ketchem’s last words: “The future is bright. There are many open avenues to apply these technologies to eosinophilic GI diseases – in diagnostic support, personalizing treatment, and predictive modeling – to make patient care better.”
[33:10] Dr Ketchem is building a research program to use epidemiologic training with artificial intelligence. He hopes to find how to take text from histology or pathology and apply epidemiologic methods, to build a cohort of patients to study diseases faster.
[34:03] Dr. Ketchem hopes to use AI to help predict patient outcomes, regarding who will respond to what therapy and who will have more complications from their disease; those are things he is interested in. There are so many unanswered questions.
[34:30] After Dr. Ketchem finishes his fellowship, he hopes to be an independent investigator, being curious and answering these questions somewhere. If you know of such a job, please let Dr. Ketchem know!
[34:53] To learn more about Dr. Ketchem’s research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you’re looking for a specialist who treats eosinophilic disorders, use APFED’s Specialist Finder at apfed.org/specialist. [35:17] To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections.
[35:26] Ryan thanks Dr. Corey Ketchem for joining us today. Holly thanks APFED’s Education Partners, GSK, Sanofi, and Regeneron, linked below, for supporting this episode.
Mentioned in This Episode:
Corey Ketchem, M.D., M.S.
Penn Medicine
Abstract of paper in Clinical Gastroenterology and Hepatology: “Artificial Intelligence Chatbot Shows Multiple Inaccuracies When Responding to Questions About Eosinophilic Esophagitis”Medscape article about the paper in Clinical Gastroenterology and Hepatology: “ChatGPT Gives Incorrect Answers About Eosinophilic Esophagitis”, by Carolyn Crist
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
apfed.org/egids
apfed.org/specialist
apfed.org/connections
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of GSK, Sanofi, and Regeneron.
Tweetables:
“We ultimately came to the conclusion that implementing this technology requires clinical oversight and it’s a tool that should be used with caution.” — Corey Ketchem, M.D., M.S.
“There will always be a role for people in medicine. You can’t replace a face-to-face connection with a chat. That’s just not going to work.” — Corey Ketchem, M.D., M.S.
“There will always need to be a human element to it. The goal is to make [AI for healthcare] as good as it can be. We’re certainly not there yet, but it’s probably closer to being here than we think.” — Corey Ketchem, M.D., M.S.
Bio:
Dr. Corey J. Ketchem, MD is a rising third-year gastroenterology fellow at the University of Pennsylvania, driven by a profound interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs). He has acquired a unique skillset in clinical epidemiology and biostatistics that equip him with the necessary tools to conduct rigorous research studies, culminating in a Master of Science in Clinical Epidemiology (MSCE) upon fellowship completion. Dr. Ketchem's passion for EGIDs has spurred a series of epidemiologic investigations focusing on both eosinophilic esophagitis (EoE) and non-esophageal EGIDs, yielding numerous publications in high-quality gastroenterology journals and earning him recognition through various research awards. Moreover, his academic path has included the incorporation of artificial intelligence into his research endeavors, aiming to enhance patient care and facilitate epidemiologic studies. Dr. Ketchem's trajectory is set toward becoming an independent researcher, dedicated to employing high-quality epidemiologic approaches to uncover pivotal insights into EGIDs, advance clinical knowledge, and optimize therapeutic strategies for patients.
Bio: Penn Medicine Division of Gastroenterology and Hepatology Fellows
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about food-induced immediate response in eosinophilic esophagitis (EoE), with guest Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine, and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program.
In this episode, Ryan, Holly, and Dr. Nirmala Gonsalves discuss food-induced immediate response in EoE, recent and ongoing research into FIRE, and advice for providers.
Listen to this episode to learn about food-induced immediate response (FIRE).
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today’s episode, food-induced immediate response in eosinophilic esophagitis, and their guest, Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine.
[1:38] Dr. Gonsalves is the Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. Her research and clinical career are dedicated to improving the care of patients with eosinophilic gastrointestinal diseases, or EGIDs.
[1:53] Dr. Gonsalves’s extensive clinical experiences with EGIDs have shaped her research goals, which include identifying novel treatments and determining the best methods to measure disease activity.
[2:20] Dr. Nirmala Gonsalves has been at Northwestern for 25 years and has been involved in the EGID and EoE space for the last 20 years. Dr. Gonsalves met Ryan during her first introduction to APFED when Ryan was “much, much younger,” so she is pleased to see him co-hosting this podcast.
[2:56] Within Northwestern Medicine, Dr. Gonsalves is part of the Esophageal Group. Within the Esophageal Group, she co-directs the Eosinophilic GI Disorders Program with Dr. Ikuo Hirano. Working in the EGID space for the last 20 years has been incredibly rewarding.
[3:11] Dr. Gonsalves feels lucky to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS) and the Consortium of Eosinophilic and Gastrointestinal Disease Researchers (CEGIR).
[3:26] Dr. Gonsalves has focused her clinical career on understanding eosinophilic GI disorders, helping to get better diagnoses, increased awareness, and better treatments, and improving the quality of life for patients with these conditions.
[4:19] Dr. Gonsalves describes the study of food-induced immediate response in eosinophilic esophagitis (FIRE). In 2017, gastroenterologist Dr. Alex Straumann, and allergist Dr. Mark Holbreich, both very familiar with EGID, started a multi-center effort and project, working with many physicians and patients to define this condition of FIRE.
[4:45] The symptoms of FIRE are very different from what we typically think about as EoE symptoms. The classic symptoms of EoE in adults are dysphagia (difficulty swallowing), or food impaction (a bolus of food stuck in the esophagus).
[5:37] This team of researchers in Switzerland, Northwestern, Indiana, North Carolina, Colorado, and Mt. Sinai, to name a few centers, noticed patients describing different symptoms; a more immediate response that was happening in their esophagus when they were exposed to certain specific foods, like beer or wine and avocado or banana.
[6:19] Patients described an immediate reaction in their esophagus, occurring any time from seconds to minutes after ingesting that food, as a painful, squeezing sensation, and a narrowing in their esophagus that was temporally related to these foods.
[6:42] It started to increase the researchers' awareness that this symptom was different from the classic dysphagia that adults and older children typically present with.
[7:12] In the study, they did a two-phased investigation. First, they sent a survey to physicians used to treating EoE, to understand what their experience was about these symptoms. Based on that knowledge, they convened twice to develop a questionnaire for patients, to understand how common this is in the patient population.
[7:38] The response was 47 physicians (an 82% response rate). They sent the patient survey to the EoE Swiss cohort and the response was 239 patients (a 65% response rate.)
[7:58] Of the physicians, 90% reported patients reporting these symptoms. The physicians estimated this to occur in 5 to 20% of EoE patients. Looking at the patients who had FIRE with EoE, vs. EoE without FIRE, the FIRE patients were younger and more likely to have other atopic conditions like rhinitis, asthma, and dermatitis.
[8:42] Patients with FIRE were more likely to have had a prior food impaction, a longer duration of disease, and a longer time to symptom presentation. Those were the risk factors in the patients.
[8:56] In the patient questionnaire, 40% of the EoE patients surveyed reported that they had symptoms of FIRE.
[9:29] Most of the patients in the study were adult patients. Looking at the average age of the EoE cohort vs. the EoE with FIRE cohort, the EoE with FIRE patients tended to be younger. Dr. Gonsalves suspects that patients are experiencing FIRE earlier on, but they don’t know what is occurring.
[9:56] Dr. Gonsalves thinks that is where the investigation is going: to understand when FIRE is happening. The symptoms are quite different than the typical first EoE symptom when something is going down slower or getting caught in the esophagus.
[10:27] As far as whether FIRE is experienced by other patients besides EoE patients, the survey team only noticed FIRE in EoE patients. A follow-up study could look at the control cohort or the regular reflux cohort. Patients don’t express these types of symptoms, other than EoE patients, so it seems unique to EoE patients.
[10:53] When the team talked about and tried to understand more about the background of FIRE, and the risk factors, they wondered if it was similar to oral pollen syndrome, with a more immediate reaction in the esophagus.
[11:49] With adults, certain liquors, wines, beers, avocados, and bananas stand out among triggers. The symptoms are so significant that patients would say on a scale of one to ten, it’s a seven intensity. It’s fairly immediate, within seconds to minutes, with a duration of minutes to several hours.
[12:18] A lot of times, patients compensate by not eating those specific foods because they don’t want that condition to happen. For some patients, it’s a profound spasm-type squeezing in their chest that will occur when this happens.
[13:44] Dr. Gonsalves says many patients will confuse FIRE with an anaphylactic reaction; it’s not clear what it is. The multidisciplinary group of physicians that worked on this study included allergists and gastroenterologists all tried to come up with the mechanism that causes FIRE. It does not appear to be an anaphylactic reaction.
[14:13] When FIRE occurs, the doctors of the multidisciplinary group ask their patients to seek care from their allergist and discuss this with their allergist, to get more testing and understanding of what’s occurring. They want to be mindful if there’s any risk of anaphylaxis, but it does not appear that the FIRE condition is related to anaphylaxis.
[14:55] Dr. Gonsalves says we’re at the very early stages of understanding the mechanisms of why FIRE is occurring. The first step was to increase awareness, define FIRE, understand it, and separate it from both EoE symptoms and anaphylaxis. We don’t yet understand the mechanisms.
[15:18] At Northwestern, they are looking at a study to define FIRE better. They look to see if there is IgE sensitivity to these foods. If there are not, they look to see if there are any nanometric changes in the esophagus when these foods are in the esophagus. Are people having the esophageal spasms that equate to the symptoms they describe?
[16:03] That study is to understand more about the mechanisms causing FIRE. What happens to the FIRE symptoms? Once a physician treats a patient with EoE, the FIRE gets better. Patients sometimes can reintroduce the foods when their EoE is quiet. There is a short window of time to identify FIRE in a patient before treatment.
[16:43] Early identification and early treatment is the mantra. They don’t want to delay treatment in any patient. When the EoE goes in remission from treatment, the FIRE symptoms tend to go into remission, also.
[17:01] This is unpublished data and research they are working on. Hopefully, they will learn more and be able to share it with APFED. These are their speculations.
[18:17] At Northwestern, they are known for dietary therapy. Their patients gravitate toward diet therapy. The foods involved in FIRE symptoms are not big EoE triggers. In dietary therapy, when foods are reintroduced, patients describe recurrent dysphagia, heartburn, and EoE-type symptoms.
[18:56] Patients having foods reintroduced don’t typically describe this immediate reaction where their esophagus is spasming, contracting, and feeling very tight right after. That’s a very different symptom.
[19:17] For the patients studied, the foods most consistently triggering FIRE symptoms were fruits, wines, vegetables, honey, beers, and vinegar. The foods driving FIRE tend to be the foods driving oral allergy but the symptoms are different; no mouth, tongue, or lip itching, but a squeezing sensation in the esophagus.
[20:29] Dr. Gonsalves says they have not identified long-term consequences of FIRE. They are very early in the stages of understanding and following it. The long-term consequences come from untreated EoE. Dr. Gonsalves lists some consequences of untreated EoE, including worsening scarring, strictures, and dysphagia.
[21:08] Dr. Gonsalves speculates and wonders if physicians were sometimes confused between dysphagia, oral-pollen allergy symptoms, and FIRE symptoms, without it being clear what the patient was experiencing, leading to a delay in diagnosis.
[21:52] Dr. Gonsalves says having patients with FIRE symptoms highlights the importance of having a multidisciplinary program and having a good collaboration with allergists, dieticians, and GI health psychologists to address food fear and anxiety, pathologists, and pediatricians. It’s important to have conversations with colleagues.
[22:31] Dr. Gonsalves says there’s no test for FIRE, which is why we’re doing this research project; understanding what is behind FIRE, now that we know FIRE exists, we have a description, and we know how prevalent it is. We need to look at the patient and look for contractions of the esophagus upon exposure to the food with manometry.
[23:18] Manometry is a tube with pressure sensors used for measuring esophageal pressure and the strength of contractions. Patients with EoE have various abnormalities in their esophageal contractions. To study FIRE, with the manometry tube in place, the patient will eat the trigger food or drink to see if there are heightened contractions.
[25:24] Manometry is not an easy test. It is done when necessary to understand esophageal motility and function. It’s not easy to recruit for these tests and there are not many candidates as the symptoms go away quickly with treatment. The technicians are skilled in doing the testing. It’s done routinely and safely.
[26:47] Dietary, pharmacological, steroidal, and biological treatments can be effective in treating EoE symptoms. When EoE symptoms stop, FIRE typically stops. There has not been a study to document this, but it has been observed clinically. After a patient has been treated and then is tested for esophageal motility, FIRE does not typically recur.
[28:05] Dr. Gonsalves shares her suspicion that there is something related to esophageal inflammation that triggers this type of response and a hypercontractile state in that setting. Ryan reminds listeners that this podcast is not medical advice; always consult with your physician before making any changes or trying new treatment options.
[29:40] When a provider talks to a patient, they might ask about dysphagia if they are making modifications for swallowing, and how they swallow something dry or dense. Can they perceive it going slowly down their esophagus? Are they taking in lots of liquid to help this food pass? Are they chewing excessively? Are they avoiding foods or pills?
[30:40] These questions help providers understand if there is disease activity and if they are not symptomatic because of avoiding these types of foods. Those are EoE questions.
[30:52] Asking about FIRE symptoms or oral pollen allergy symptoms, the provider will go down a list of allergic history questions about allergic rhinitis, asthma, eczema, and anaphylactic symptoms. Also, mouth itching, lip-tingling, or throat itching when they eat certain foods.
[31:20] After they eat these foods, do they ever experience an immediate sensation of narrowing or tightening or spasm in the esophagus, or burning pain that happens secondary to the dysphagia? The important thing is to separate the transit dysphagia of things moving slower down the esophagus from this perception of squeezing pain.
[32:18] Holly thanks Dr. Gonsalves for sharing her expertise to help others.
[32:37] Dr. Gonsalves’s last word is that this condition exists. Providers, ask your patients about them. It was remarkable to Dr. Gonsalves how profound the symptoms were that patients described to the point where they avoided these foods and were scared of these foods.
[32:56] Interestingly, FIRE is very different from EoE symptoms. It does exist. Ask about it! That will help tease out the reactions that are occurring. Especially, understand that when going on a food elimination diet, these are separate from the EoE triggers.
[33:18] If you identify these symptoms, or oral pollen symptoms, or coexisting atopic conditions, partner with an allergist so that we understand the mechanisms behind this and make sure that nobody is at risk for anaphylaxis from these types of things.
[33:49] Dr. Gonsalves is pleased to partner with TIGERS and to be on a site for the CEGIR Group. Dr. Gonsalves heads up the development of the Non-EoE Consensus Guidelines, to understand what goes into a diagnosis of Non-EoE EGID and what that entails. She continues to research dietary therapy and making it better for patients.
[34:31] She works to understand different metrics to measure activity in the esophagus, histologically as well as motility-based, and the genetic changes that occur with different treatments, and doing all this, partnered with an amazing group of collaborators through the CEGIR Consortium and others to improve patients’ quality of life.
[35:01] Dr. Gonsalves feels lucky that 20-something years ago, she bumped into the leaders of APFED and other patient advocacy groups and shared their experience with Northwestern. She is grateful for the privilege of working with all the wonderful physicians and patients who help us learn about these conditions.
[35:46] To learn more about Dr. Gonsalves’s research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you’re looking for a specialist who treats eosinophilic disorders, use APFED’s specialist finder at apfed.org/specialist. [36:10] To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections.
[36:21] Ryan thanks Dr. Nirmala Gonsalves for joining us today. Holly thanks APFED’s Education Partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.
Mentioned in This Episode:
Nirmala Gonsalves, MD
Northwestern Medicine Feinberg School of Medicine
Ikuo Hirano, MD
Publication discussed: Food-induced immediate response of the esophagus — A newly identified syndrome in patients with eosinophilic esophagitisAmerican Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
apfed.org/egids
apfed.org/specialist
apfed.org/connections
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.
Tweetables:
“Working in the EGID space for the last 20 years; it’s been incredibly rewarding. I’ve been lucky enough to be invited to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS).” — Nirmala Gonsalves, M.D.
“Our patients will describe it; it’s a profound spasm-type squeezing in their chest that will occur when FIRE happens.” — Nirmala Gonsalves, M.D.
“There’s no clear test yet for FIRE, which is why we’re doing this research project; really understanding what is behind FIRE, now that we know FIRE exists, we have a description of it and we know how prevalent it is.” — Nirmala Gonsalves, M.D.
Bio:
Dr. Gonsalves is a Professor of Medicine in the Division of Gastroenterology & Hepatology at Northwestern University Feinberg School of Medicine and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. She completed her undergraduate training at the University of Notre Dame, medical school at Robert Wood Johnson Medical School in New Jersey, and her internship, residency, and fellowship at Northwestern, where she has stayed on as an attending physician since 2005. In this role, she has co-authored more than 60 manuscripts and presented at more than 40 national or international meetings that focus on eosinophilic gastrointestinal diseases (EGIDs). Her research and clinical career is dedicated to improving the care of patients with these rare disorders. Her extensive clinical experiences with EGIDs have shaped the overarching research goals that include identifying novel treatments and determining the best methods to measure disease activity. She is a site investigator for the NIH-funded U54 Grant Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, PI-Rothenberg) and Core Lead for the Northwestern Biorepository for an NIH sponsored PPG Grant on Esophageal Biomechanics (PI-Pandolfino).
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about the Spoon Theory. In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives.
Listen to this episode to learn how the Spoon Theory could work for you.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today’s episode, the Spoon Theory. Both Ryan and Holly will discuss their experiences.
[1:39] About ten years ago, fatigue became a challenge for Holly. As she researched options for managing her fatigue, Holly came across the Spoon Theory, a tool she uses and teaches now in conferences and talks.
[2:05] The Spoon Theory is a story written and copyrighted by Christine Miserandino in 2003 to help explain how chronic illness affects the amount of physical and or mental energy a person has available for daily activities and tasks and how it can be limited.
[2:28] About a year ago, in a Community Conversations episode of APFED’s podcast, guest Ashley Spencer discussed EGPA. Ashley and Holly brought up the Spoon Theory. Ryan calls the Spoon Theory a digestible way to convey the effect of living with fatigue from chronic illness.
[2:46] Holly shared how Christine Miserandino developed the Spoon Theory while at brunch with a friend. Her friend asked Christine how she was coping living with lupus. Christine grabbed all the spoons from the table and explained that each task throughout the day costs a spoon.
[3:21] Christine asked her friend to walk through every activity of her morning. As her friend started talking about the different things she does, Christine would remove a spoon from her pile of 12 spoons. When dinnertime came, there was only one spoon. That limited her choices for dinner; this was long before dinner delivery services.
[4:19] Through this exercise, Christine’s friend learned how chronic illnesses use up a lot of energy just from existing. For listeners who want to read more, please check out Christines’ website, ButYouDontLookSick.com, linked in the show notes.
[4:33] Ryan sees the Spoon Theory as an easy way to convey what living with a chronic illness is like. He asks, why is it 12 spoons? Does everyone have the same number of spoons? In interviews, Christine has said 12 was the number of spoons on the table but it is a good representation of the limited supply people with chronic illnesses have.
[5:07] According to the theory, healthy people have an “unlimited” supply of spoons, while people with chronic illnesses have to ration their spoons to get through the day. Everybody’s number is slightly different but the theory uses 12.
[5:22] Ryan shared a story about seeing his sister during the holidays. She doesn’t have a chronic illness. She seems to have unlimited spoons for activities she plans, while Ryan may run out of spoons around 10:00 a.m.
[5:46] Ryan asks if it is always the same number of spoons per day. Holly says your baseline number is about 12 spoons. It can vary if you borrowed spoons from the day before or if you have spoons left over from the day before. Some say on a good day, you might wake up with 20 spoons but a bad day would start with 12 spoons.
[6:34] Holly explains about borrowing spoons. If you run out of spoons on one day, before you finish your activities, you might borrow spoons from the next day by canceling a planned activity for the next day. Holly also explains it to people as a lending library.
[7:49] When Ryan was young, he attended the APFED patient education conference every year. He recommends it. His parents warned him not to overextend himself but to take it easy and rest during the day. At every conference, he just kept going for 12-plus hours. When he got home, he would crash for a day. He had used up all his spoons!
[8:36] Ryan asks what happens when you run out of spoons. Holly shares that when you run out of spoons, your body might have a flare-up, or be more susceptible to getting sick because you’ve become rundown. [9:10] It can also lead to comparison with others and feeling sad or anxious because you don’t have the energy that healthy people around you have. For the average person with chronic illness, cooking from scratch from a recipe could be three or four spoons.
[9:51] For someone with a specialized diet, that could double. You’re not just reading the recipe, you have to think about substitutions and go buy them. You have to know if the recipe will taste good with substitutions. It’s mentally exhausting to follow recipes for specialized diets.
[11:04] Holly is an extrovert but sometimes being with people can take too many of her spoons, so she carefully plans her socializing. Being with good friends might take three spoons. Presenting at a conference takes more spoons. Walking a dog could take two spoons. Taking medication or brushing her teeth could take one spoon.
[12:10] For children with chronic illness, going to school might take four of their spoons. Playing soccer might take five spoons, so at times they don’t have the energy. This can result in absences from school because they want to have typical social lives but don’t have the energy and reserves to do so. It’s the same for adults but it’s a hard fact for children.
[12:53] Ryan was diagnosed with EoE at age two. Ryan thinks back to high school. He woke up at 6:15 every day to get to high school before 8:00. Getting to school on time probably took most of his spoons. The rest of the day was exhausting. He never did any extracurriculars in high school. By 3:00, he was down for the count.
[13:50] If Ryan’s friends wanted to spontaneously do something after school, he often had to refuse. He needed a few days to prepare physically and mentally for extra activities. Having something sprung on him at the last minute drained more of his spoons. He would like to have had the Spoon Theory to explain it to his friends.
[14:52] Holly says there is a mental aspect to having a chronic illness. You have to think about things in advance, especially people living with eosinophilic diseases and/or those who have specialized diets. To consider going out to a meal, you might have to research a restaurant in advance or even talk to the chef. Thinking about and making these phone calls requires spoons.
[16:06] Recently Ryan planned to go out with friends. After they picked a restaurant and Ryan chose what he would order, the friends decided to try a different restaurant. Ryan had to check the menus of six other restaurants before they settled on the original one. The extra effort depleted Ryan’s energy and he just sat quietly during dinner.
[19:14] Ryan didn’t push himself to be social because it would have eaten into his reserve spoons for the following day. As it was, he slept in the next day.
[20:07] Ryan has had days where he has had to use up the next day’s spoons, and then had the next day be equally busy.
[20:28] The Spoon Theory can be applied to different chronic illnesses. Most of them are invisible illnesses. It makes sense that Christine’s website is named ButYouDontLookSick.com.
[21:29] Holly loves that the Spoon Theory provides a visual representation of how our energy works and how we can manage it. Because many chronic illnesses are invisible, people don’t always understand why we have to cancel, abort, or decline plans. We often have to prioritize activities to protect our health. It’s a different standard.
[22:10] We prioritize activities to protect our health and how we feel. Holly uses the Spoon Theory to explain why she declines plans in advance when she has too many things scheduled. She wouldn’t be her best self. Holly rarely schedules anything for after an eight-hour workday.
[22:55] Holly thinks of herself as a dynamic person who brings a lot to the table. She doesn’t want to be in an activity where she can’t participate fully. It reflects on how much her diagnosis seeps into her life. She doesn’t like to share her EoE with everybody, even though many people in her life know it and she does this podcast!
[23:25] Over the last six months, Holly’s goal has been to map out her week to keep her energy consistent. She plans when to work out in the morning, when to see patients, and when to fly for international conferences. She gives herself a rest day after the flight or she stumbles and mumbles during the presentation. This means she often declines dinner invitations.
[24:45] Holly will accept invitations to destination weddings but then will not book anything extra for a week afterward or she knows she will get sick. It’s a pattern.
[25:28] Ryan says sometimes people can tell when he’s not at his best, but for the most part, he looks relatively healthy. He’s up and about, at meetings and conferences but it’s such a limited amount of energy that he has available. It’s hard for people with unlimited spoons to gauge how many spoons Ryan has left.
[25:57] Holly often presents at medical conferences about feeding therapy, eosinophilic diseases, food allergies, FPIES, and tube feeding, and she incorporates the Spoon Theory into some of her talks. She has spoons at the podium and starts dropping them as she goes, holding one or none by the end. That’s when questions come.
[27:25] Holly likes people to know that when they’re working with kids with chronic illness, it’s important to pace out their therapy. For example, give a patient two things to work on until the next time, not ten, to be successful.
[28:50] Ryan clusters his multiple specialist annual visits at the start of the fall semester and at the beginning of the spring semester. That means he misses some classes and lectures at the beginning of each semester. It is draining. Tests eat up half his spoons for the day.
[30:35] Holly shares how applying the Spoon Theory impacts managing her health. The Spoon Theory helps her create and maintain boundaries. She adamantly tries to stick to a schedule that rarely depletes her spoons per day. It’s still a work in progress. Holly has a therapist who is helping her work on it.
[31:08] Holly schedules social things on days when she has little to no other obligations. She has to maintain that schedule. She has good days and sometimes great weeks which leads her to add more to her plate, but then she runs out of spoons more quickly because she’s borrowing from the next day. Eventually, she has no spoons to borrow.
[31:42] Holly went on vacation for her birthday and then last week she was doing great, taking some urgent referrals for babies. This week, she had to cancel things. She is learning that she needs to schedule time to recharge and rest even on good days.
[32:26] Holly has learned there are ways to increase your number of spoons. The most important things are to be compliant with treatment and follow a specific diet (if recommended). A lot of chronic illnesses have a specific researched diet to help you stay healthy. When you have a cheat day, you’re harming yourself by taking spoons from your next day.
[33:31] Working out helps with anxiety and depression. There are physical and mental health benefits. Holly started tracking over the last eight months how many spoons working out earned for her, compared to the spoon it took from her. She finds that it adds three to five spoons to her daily reserve. The endorphins boost her energy.
[34:14] Ryan agrees. He goes to the gym at least twice a week. If he misses a day, he feels worse. He goes out for a walk on days he’s not going to the gym just to get moving and he feels better after that. Being stuck inside all day is mentally draining as well. Going for a walk takes extra effort but it does feel better.
[35:32] Ryan and his mother have similar food allergy issues so they both carefully stick to their diet. If they vary their diets on vacation, even without eating triggers or allergens, they feel physically bad for a few days until they get back to their usual diets.
[36:28] Once Holly learned about this theory and was making new contracts, she realized that there may be times when she might have to cancel and reschedule. When she sends an email about an engagement, she includes an article on the Spoon Theory and describes what she is struggling with, in case she has to reschedule.
[37:42] The Spoon Theory is a good way to describe to friends or family why the person with the chronic illness isn’t hosting the holiday but may need to go to a room and rest at the host’s home. It’s a tool to inform loved ones and friends so they can be supportive. It’s a different way to share our struggles with our chronic illness. [38:27] When Ryan meets people and tells them about his health issues, he might say he has food allergies but then also explain how his conditions lead to a limited supply of energy, and then tell about the Spoon Theory. It’s a helpful tool we can all use, going forward.
[39:08] Our listeners can learn more about the Spoon Theory by going to Christine Miserandino’s website, ButYouDontLookSick.com.
[39:47] To learn more about eosinophilic disorders, visit APFED.org. If you’re looking for a specialist who treats eosinophilic disorders, use APFED’s specialist finder at APFED.org/Specialist. [40:05] To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at APFED.org/Connections.
[40:14] Ryan thanks Holly for sharing information about the Spoon Theory. It means a lot to Holly that we have a platform to reach a lot of people. Holly hopes if you are struggling with a chronic illness that you are not alone and you can use this tool to bring your loved ones and friends closer. Maybe weed out the people who aren’t helping.
[41:15] Holly thanks APFED’s education partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.
[41:26] Ryan shares how he just met his partner’s friend and by discussing symptoms while picking a place to eat, it turns out she was diagnosed last year with EoE. It’s unusual for him to meet people with EoE out there randomly. Ryan is glad to be creating this resource for people. Holly agrees 1,000%.
Mentioned in This Episode:
Christine Miserandino
ButYouDontLookSick.comAmerican Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
APFED.org/Specialist
APFED.org/Connections
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.
Tweetables:
“Approximately 10 years ago, fatigue became a real challenge for me and as I researched options on how to manage fatigue, I came across the spoon theory, which is what we’re going to specifically discuss today.” — Holly Knotowicz
“[The Spoon Theory] is such an interesting story and it feels like such an easy way to convey what living with a chronic illness is like.” — Ryan Piansky
“We all have people in our lives whom we love dearly, but they could maybe be taking too many of our spoons, so you have to be thoughtful about when you plan time with them.” — Holly Knotowicz
Description:
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Jacqueline Gaulin, the Founder of Gastro Girl, a source of information for people living with various gastrointestinal disorders. In this episode, Ryan and Holly interview Jacqueline Gaulin about her career, how she started Gastro Girl, its podcast, and the partnership between Gastro Girl, the American College of Gastroenterology, and GI on Demand.
Listen in for more information about this empowering resource for GI patients and their families.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:51] Ryan Piansky and co-host Holly Knotowicz welcome Jacqueline Gaulin, Founder of Gastro Girl, a patient-centered company that focuses on empowering individuals living with digestive health conditions through evidence-based information, resources, and access to GI experts to help people make informed healthcare decisions.
[1:42] Holly thanks Jqcqueline for having APFED’s Executive Director, Mary Jo Strobel, as a guest on the Gastro Girl Podcast last fall. There is a link in the show notes.
[2:07] Jacqueline started Gastro Girl as a blog, in 2007/2008 while working for a startup, trying to do great things for healthcare. She was charged with the Digestive Health channel. They needed content on living with disease and empowering patients. She created a persona, Gastro Girl, and started a blog around her.
[2:41] Gastro Girl became a popular part of the site. The company was bought but Jacqueline retained the URL, Gastro Girl, and the persona. She engaged on Twitter and then got a job at the American College of Gastroenterology (ACG) where she dug into GI and learned the pain points from both the provider and patient sides.
[3:09] Jacqueline saw that patients didn’t have the resources, access, and champions they needed so she created a company out of Gastro Girl to meet their needs. In 2019, Gastro Girl partnered with ACG to create a provider-focused platform, GI On Demand, that provides ACG members and their patients access to multi-disciplinary GI expertise.
[4:02] Ryan tells about his experiences with APFED as a person living with Eosinophilic Esophagitis and Eosinophilic Asthma. His family is passionate about the patient experience for people with eosinophilic disorders. Ryan sees that Jacqueline is also passionate about empowering patients.
[4:39] Jacqueline loves that patients and their loved ones are involved in advocacy. There is no better voice than those who walk on that health path. Jacqueline, as a child, saw her grandmother needing laxatives to feel better. Jacqueline didn’t understand. Then Jacqueline got a dog with digestive problems that needed veterinary help.
[5:51] Jacqueline was fascinated by the whole connection between the digestive system and our overall health. When she started Gastro Girl she was going through a lot of trauma and lost a lot of weight. She was diagnosed with irritable bowel syndrome (IBS).
[6:48] Gastro Girl brings together resources and information that run the gamut of digestive-health-related topics. It has resources and partners, like APFED, that cover all the areas of GI and bring the pieces together to help patients find the information they need, when and how they need it.
[7:21] Holly tells how she searched symptoms online, was able to find Gastro Girl, and did a deep dive to navigate many areas. Holly also tells how she saw herself in patients’ symptoms while she was helping in an EoE clinic before she was diagnosed with it.
[8:38] Gastro Girl has baseline content on what eosinophilic gastrointestinal disorders are and how they are diagnosed. Then it points to expert partners like APFED to speak to eosinophilic disorder topics and support in-depth. Gastro Girl focuses on symptoms and identifying diseases earlier to get into care quicker.
[9:25] The Gastro Girl podcast and YouTube channel have episodes on EoE. The comments that come in on the videos, like “EOE 101,” Jacqueline says are mind blowing. People say the videos help them identify what possibly could be going on and get them to seek care without alarming them.
[10:34] Gastro Girl offers evidence-based information and resources so that people know they can come to the site and find sites like APFED and the ACG that are trusted and credible, that will not send them down a rabbit hole and confuse them.
[12:07] A colleague of Jacqueline’s friend emailed Jacqueline with her young son’s symptoms. Jacqueline isn’t a doctor and can’t diagnose but the symptoms sounded like EoE. She recommended that the mother ask her son’s doctor if he could be tested. Two months later she heard he had eosinophilic asthma and EoE.
[13:21] Jacqueline says the biggest message we could get out there is for patients to pay attention to credible resources. She cautions patients to be mindful and use discretion when going to the sites for their health information. Dr. Google is not great. Holly directs patients toward specific videos or episodes that offer the best information.
[14:41] There are some times when Jacqueline does not approve a comment to a podcast or video if she is concerned the comment will do more damage than good. She urges listeners and viewers to exercise caution on what comments they listen to.
[16:22] Jacqueline has interviewed many patients, caregivers, and providers in the GI space. She says patients want to be heard and feel that they are being listened to and that they’re getting access to the right information so they can feel better. That can mean different things to different patients in their quality of life.
[17:47] Gastro Girl is about putting the patient at the center. Being patient-centric is seeing the patient’s view first. Gastro Girl supports patients having collaborative care and shared decision-making, giving information so they are more educated and informed as they ask questions and collaborate on decisions with their providers.
[19:25] Thinking critically and asking the right questions makes you an active participant in your healthcare journey, and hopefully, gets you to a better result.
[20:26] Jacqueline learns every day from her podcast guests. She has learned that healthcare providers, gastroenterologists, dieticians, and psychologists care about their patients. They want patients to get better. Their passion and caring are overwhelming.
[21:20] Jacqueline has learned that patients are resilient and committed, not only to finding better ways to have a better quality of life but also to advocacy efforts, helping, and lifting their fellow patients. Jacqueline says together we are much stronger than to be isolated by ourselves, dealing with big healthcare issues.
[22:55] Many doctors are involved in research, speaking, webinars, and educating fellow providers and patients. It’s mind blowing to Jacqueline!
[23:16] Running Gastro Girl and GI on Demand during COVID-19 was hard and stressful for Jacqueline. She was inactive and gained weight. She worried about taking care of others, but not herself. She is back on track, exercising and losing weight.
[26:08] Jacqueline says we have to be kind to ourselves; we have to have compassion and grace towards ourselves. We’re very kind and compassionate to others and give them grace. Make sure you extend grace to yourself.
[26:27] Jacqueline cites Tara Cousineau, author of The Kindness Cure. Positive reinforcement is better than beating yourself up. When you feel good, you’re going to do the good things next time.
[27:46] Jacqueline tells about GI on Demand. It’s provider-focused with multiple disciplines available for healthcare providers. Providers and patients can search for dieticians, GI psychologists, and genetic testing and counseling. This helps GI providers and their practices to help their patients better.
[31:24] Jacqueline plans for Gastro Girl to continue to do great work for patients. She is working on an educational bus tour, “Gastro Girl to the Rescue Bus Tour!” with partners such as APFED, to bring information to individuals at home. Patients can be guided to resources, like getting a proper diagnosis or finding a provider. It’s a lot of logistics!
[32:56] To check out Gastro Girl’s website, visit GastroGirl.com. To learn more about eosinophilic disorders check out the resources there and also visit APFED.org. If you’re looking for a specialist who treats eosinophilic disorders, you can use APFED’s Specialist Finder at APFED.org/Specialist.
[33:21] If you’d like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at APFED.org/Connections.
[33:30] Ryan and Holly thank Jacqueline Gaulin again for joining them. Ryan would be happy to go on the Gastro Girl podcast any time to talk more! Holly thanks APFED’s education partners, linked below, for supporting this episode.
Mentioned in This Episode:
Jacqueline A. Gaulin
Gastro GirlWhere Can I Find Resources for Eosinophilic Disorders? Special Guest Mary Jo Strobel
GI on Demand
Gastro Girl Channel on YouTube
The Kindness Cure: How the Science of Compassion Can Heal Your Heart and Your World, by Tara Cousineau
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.
Tweetables:
“I love when patients get involved in advocacy because there’s no better voice for the patient than those who walk in that path, whatever their health condition or journey is, or even if they have a loved one.” — Jacqueline Gaulin
“What Gastro Girl really offers is evidence-based information and resources so that people know that they can come to our site and find sites like APFED and the ACG that are trusted and credible.” — Jacqueline Gaulin
“The biggest message we could get out there is for patients to pay attention to the credible resources. I just caution patients to be mindful and use discretion when going to the sites for your health information.” — Jacqueline Gaulin
“To think critically and to ask the right questions will get you, hopefully, a better result in your healthcare journey because you’re not just a passive participant, you’re actively playing an important role in your healthcare with your provider.” — Jacqueline Gaulin
About Jacqueline Gaulin
An early champion of a patient-centric, collaborative, and multidisciplinary approach to gastrointestinal health, I worked for several early-stage health-related start-ups, including Revolution Health. During my time with the American College of Gastroenterology (ACG), I led the ACG into the digital age by creating and executing strategic communications plans and patient education campaigns around a variety of digestive health topics and related research, including IBS, IBD, Liver disease and colorectal cancer awareness.
After six years with the ACG, my passion for empowering patients inspired me to evolve my popular blog, Gastro Girl, into a digital health company in 2015, Gastro Girl, Inc., to provide patients with access to the GI expertise and evidence-based information and resources they need to follow their doctor’s treatment plan and make informed health care decisions with their care team for better health outcomes.
Description:
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Kathryn Peterson, MD, MSCI, a Professor of Gastroenterology at the University of Utah Health. In this episode, Ryan and Mary Jo interview Dr. Peterson about the family risk of eosinophilic gastrointestinal diseases, discussing the studies she has done, future work she is planning, and other studies of related topics. She shares that she is a parent to a patient living with an eosinophilic disorder. She hints at future research that may lead to easier diagnosis of EGIDs.
Listen in for more information on Dr. Peterson’s work.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:49] Ryan Piansky welcomes co-host Mary Jo Strobel. Mary Jo introduces Dr. Kathryn Peterson, a Professor of Gastroenterology at the University of Utah Health. Dr. Peterson specializes in diagnosing and treating diseases of the digestive system including eosinophilic esophagitis (EoE), Barrett’s esophagus, and inflammatory bowel disease.
[2:00] Dr. Peterson works at the University of Utah in Salt Lake City. She co-directs an eosinophilic gastrointestinal disease clinic with Dr. Amiko Uchida. They also work closely with allergy, nutrition, and pharmacy in the clinic and are looking for additional ancillary services to come into the clinic.
[2:27] Dr. Peterson takes care of all sorts of eosinophilic gastrointestinal diseases. She works closely with Dr. Gerald Gleich, as well. Dr. Peterson is a mother of a boy living with eosinophilic disease for 10 years, so she experiences both sides of eosinophilic diseases. She loves her job.
[3:23] Familial risk refers to the risk of the disease in a patient when a family member is affected, compared to the general population. Looking at a proband (patient), is a first-degree family member (parent, sibling, or child) also affected with eosinophilic disease? Is a second-degree family member (grandparent) affected? Are cousins?
[3:58] Dr. Peterson’s is trying to see if and how far out the risk for the disease goes within a family. Based on that, you can get an idea if some shared genes are involved, vs. shared environmental influence of the disease within family members. That’s the idea of doing family risk studies in complex diseases; eosinophilic diseases are very complex.
[4:44] Dr. Peterson explains how she conducts a family risk study in Utah. The Utah Population Database is very helpful. The University of Utah has partnered with The Church of Jesus Christ of Latter-day Saints for large genealogical pedigrees that allow tracking disease through expanded pedigrees, with privacy and security limitations.
[5:24] It’s necessary to clarify physician coding to make sure it’s realistic and coded appropriately so that results are believable. It’s very hard to recruit family members. Dr. Peterson feels extremely blessed to live in that area. The families are generous and giving. She also believes all eosinophilic families are generous.
[6:34] The farther out you can identify the risk for disease, the more likely you will find a common gene that could be implicated in disease risk or onset. If the disease is tracked in extended relatives, it implies a shared gene more than a shared environmental risk. If the disease is isolated within nuclear families, it may indicate an environmental risk.
[7:39] In doing familial research, Dr. Peterson is trying to develop a risk score. People are getting pretty good at diagnosing EoE, but Dr. Peterson would not say that the non-EoE EGIDs are well-established or well-diagnosed. They are missed commonly and often. To have a risk score from the extent of the disease in a family is helpful.
[8:12] Dr. Peterson notes that studies of cancer risk in extended families have established cancer risk scores and related screening that is needed.
[8:43] Dr. Peterson coauthored a paper in November 2020 about the familial risk of EoE, published in the Clinical Gastroenterology and Hepatology Journal. She and her colleagues looked at nuclear families. They were looking for how many members of the nuclear family of an EoE patient have esophageal eosinophilia.
[9:28] They used a questionnaire on allergies, food allergies, and symptoms. They pulled in around 70 first-degree family members and scoped them for eosinophilia, pulled the records on the rest of the family members if they had been scoped, and assessed the risk for eosinophilia.
[9:51] Including the records, and assuming that everyone who hadn’t had an endoscopy was negative, they found the risk for esophageal eosinophilia in first-degree family members was 14%, bordering on the familial risk for celiac disease. It’s probably higher since they assumed anyone who hadn’t been scoped didn’t have eosinophilia.
[10:19] They called it esophageal eosinophilia, because the guidelines for diagnosing EoE suggest that the patient must complain of symptoms, and these family members did not have symptoms. It was interesting to find this high prevalence of eosinophilia in the nuclear family members of EoE patients. They had a higher risk of allergy, as well.
[11:14] Dr. Peterson explains the differences between esophageal eosinophilia and eosinophilic esophagitis (EoE). Esophageal eosinophilia means eosinophils are in the esophagus, >15 per high-power field in a biopsy. That could qualify as EoE when you go through the criteria of symptoms.
[12:19] We call it esophageal eosinophilia while we rule out everything else that could cause that cell to get recruited into the esophagus. It could be an allergic reaction to a medication, larger eosinophilic disorders, or parasitic infections. Esophageal eosinophilia means you had that initial biopsy that puts you at risk for EoE.
[13:06] You have to go down the diagnostic steps: Do I have symptoms? Do I have anything else that explains it? If you have nothing else that explains the eosinophils, and you have esophageal dysfunction, then you can call it EoE.
[13:33] Dr. Peterson, speaking personally, believes that educating doctors to ask patients about EoE symptoms would be useful in diagnosing EoE. People cope. You don’t want to focus on your symptoms because you want to be able to focus on your life. If symptoms aren’t brought to a doctor’s attention, a diagnosis can get missed.
[16:47] Dr. Peterson discusses risks for EoE in families where allergies are present. Dr. Peterson is involved currently in another familial study to find more information about the risk of EoE where there are allergies in a family. In the preliminary data, it looks like there is a link with asthma. Asthma and EoE in a family seem to track together.
[17:31] The risk of EoE seems to be higher with additional allergies within a family. Dr. Peterson says they are cleaning up the data to get a better answer. It appears that allergies in general go along with some of the genes that have been identified in EoE. Watch for Dr. Peterson’s papers going forward!
[19:05] They looked at around 300 eosinophilic gastroenteritis (EGE) patients and about 170 eosinophilic colitis (EoC) patients. If you have a proband with EoE, is there a higher family risk of having EGE or EoC? It looks like EoE puts you at higher risk of these other conditions. But with such low numbers in the study, the jury is still out.
[20:37] They looked at EGE codes because there is a subset of patients who have eosinophilic disease in their stomach and small bowel who don’t have EoE. They found that in patients who have eosinophilic disease in the stomach or the small bowel, EoE is still commonly seen throughout families. EoE seems to be a common theme.
[21:54] Down the road, Dr. Peterson hopes to be able to identify enough families that they might be able to start looking at genes that might put people at risk for more extensive disease.
[23:07] Dr. Peterson discusses the difficulty in diagnosing eosinophilic colitis, inflammatory bowel disorder, and other disorders. Having eosinophils does not categorize you as an EGID patient. There are other disorders where eosinophils are present. We need a better understanding of eosinophilic colitis.
[25:21] Eosinophilic asthma and eosinophilic fasciitis are disorders that Dr. Peterson has not studied but are in the Institutional Review Board approved documentation for future study.
[26:18] Dr. Peterson addresses whether your degree of risk for an EGID increases if you have an immediate family member with an EGID, vs. a second cousin with an EGID. She would say yes, based on the hazard ratios in the data and knowing that eosinophilic disorders are complex and twin studies show an environmental influence.
[27:28] Dr. Peterson asks patients about their family history, especially when they have other symptoms besides EoE. It makes her more aware of what to test.
[29:10] A paper Dr. Peterson is about to submit studied family members who weren't affected, who were siblings of probands. Their mucosa wasn’t entirely normal. They may be pre-diagnostic. These are patients who need to be followed. There may be things that set people up for the development of this disease, in the right environment.
[31:04] Something fascinating from the familial study is the challenge of diagnosing EGIDs. Fifty percent of the people they brought in hadn’t had an endoscopy. We need to be proactive in identifying diseases in patients. In the study, there are a lot of general GI symptoms coded that Dr. Peterson wonders if they may be missed EGIDs.
[32:34] The NIH gave Dr. Peterson’s team funding and they were able to do linkage analysis on several de-identified families that were at high risk for EGIDs. It looks like multiple genes have the potential to be involved. Personalizing medicine would be applicable if there were just one specific gene involved.
[33:23] Down the road, we may find some genes that portend higher risk and other genes that portend risk where we can do preventative environmental care. We can develop risk scores to identify risks and point to interventions.
[34:10] Mary Jo thanks Dr. Peterson for joining us today to share her expertise and help us learn and understand.
[34:36] Future research needs to be done where we are able to recruit patients and do more work looking at genetic linkage and get to the point where we can diagnose and identify non-EoE EGIDs well enough to explore them more, including eosinophilic colitis. Defining those diseases is necessary and needed.
[35:16] A lot of what Dr. Peterson is trying to do is to look further into combined diseases and hypereosinophilic states to determine if there is some gene within families that may help her to develop other therapies not focusing only on the GI tract but on a global approach to health for these patients.
[35:48] There is current research being done to find less invasive ways of identifying disease, such as imaging, so people don’t have to undergo endoscopy. That research is being done on the commercial side.
[36:44] Dr. Peterson has been looking at food-specific antibodies. Also, research by other doctors is being done to identify other markers of the foods that often trigger the disease. There has been some interesting preliminary data. This can help patients to eliminate fewer foods.
[37:27] Dr. Peterson has been looking at less invasive ways to identify non-EoE EGIDs in ways that can avoid biopsy.
[38:04] What’s being done to study Barrett’s esophagus? Dr. Peterson speaks of past and planned research, using the Utah population database. They looked at the risk for Barrett’s esophagus in patients with EoE and it was eight times higher than the normal population. Dr. Peterson correlates risks with reflux for Barrett’s and EoE.
[39:26] There are still questions about which comes first, EoE, Barret’s esophagus, or reflux. She also talks about the relationship between achalasia, allergic diseases, and EoE.
[41:05] To learn more about Dr. Peterson’s research, please see the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, please visit apfed.org/egids.
[41:29] To find a specialist, visit apfed.org/specialists. To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections.
[41:48] Ryan and Mary Jo thank Dr. Kathryn Peterson again for joining them. Mary Jo thanks APFED’s education partners, linked below, for supporting this episode.
Mentioned in This Episode:
Kathryn A. Peterson, M.D.
Pubmed.ncbi.nlm.nih.gov/36148824/ (to release February 2024)
Pubmed.ncbi.nlm.nih.gov/33221551/ (published November 2020)
University of Utah Health
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.
Tweetables:
“When we study familial risk, we’re looking at the risk of the disease in a patient when a family member is affected, compared to the general population.” — Dr. Kathryn Peterson
“I think allergies, in general, kind of go along with some of the genes that have been identified in EoE.” — Dr. Kathryn Peterson
“Fifty percent of the people we brought in [to this familial risk study] hadn’t had an endoscopy. We need to be proactive in identifying diseases in patients.” — Dr. Kathryn Peterson
About Dr. Kathryn Peterson
Kathryn Peterson, MD is a Professor of Gastroenterology at the University of Utah Health. She is certified by the American Board of Internal Medicine.
Dr. Peterson specializes in diagnosing and treating diseases of the digestive system including eosinophilic esophagitis, Barrett’s esophagus, and inflammatory bowel disease. She completed her medical degree at the University of Texas Southwestern, followed by residency and a fellowship at the University of Utah and a master's program in Epidemiology at Harvard University.
Bio: Healthcare.utah.edu/find-a-doctor/kathryn-peterson
.
Description:
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Dr. Amanda Muir, an Assistant Professor of Pediatrics at the Children’s Hospital of Philadelphia. In this episode, Ryan and Holly interview Dr. Muir about tissue remodeling and eosinophilic esophagitis (EoE). Dr. Muir describes remodeling and stiffening, its effects, and how it relates to treatment and inflammation.
Listen in for information on remodeling and a pediatric study Dr. Muir is planning.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:48] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces Dr. Amanda Muir, an Assistant Professor of Pediatrics at the Children’s Hospital of Philadelphia (CHOP). She has a translational lab that investigates esophageal remodeling in the setting of EoE. Holly thanks Dr. Muir for joining us today.
[1:51] Dr. Muir became interested in eosinophilic disorders as a GI Fellow. There were so many patients with eosinophilic esophagitis and eosinophilic gastrointestinal diseases but there weren’t many good therapies and little was known about the long-term results for children.
[2:24] Dr. Muir’s first eosinophilic interest was eosinophilic esophagitis. She joined a lab that was looking at how the esophagus changes over time in the setting of inflammation. After being in the lab, training, and learning all the skills and techniques, she was able to launch her career and lab.
[2:46] Dr. Muir started her own EoE clinic at CHOP (Children’s Hospital of Philadelphia) as part of their Center for Pediatric Eosinophilic Disorders. She sees patients at the clinic, then she can bring questions from the clinic to the lab and talk about them as a group.
[3:28] Dr. Muir explains esophageal remodeling. There is remodeling that happens in the epithelial compartment of the esophagus. Then there’s remodeling that happens underneath the surface in the lamina propria. For the most part, when people talk about remodeling in eosinophilic esophagitis, they refer to the remodeling happening below the surface.
[3:50] There is a burgeoning field dedicated to studying the surface of the esophagus, and Dr. Muir is also very interested in that. For today’s purposes, we are talking about the remodeling that happens under the surface.
[4:03] Eosinophils that get to the esophagus secrete chemicals that excite the cells below the surface to secrete collagen. Collagen is the glue that holds the body together. They’re secreting glue to help the esophagus hold together, and the esophagus gets stiffer and stiffer, over time. That is remodeling. It’s the body trying to heal itself.
[5:04] Are children and adults equally at risk for remodeling? Patients develop a stiffening of the esophagus more, later in life. It is thought that the more years you have this inflammation, the more stiff your esophagus gets. There are patients six to nine years old who already have signs of stiffening.
[5:28] Dr. Calies Menard-Katcher from Colorado published a paper where she described all of the eosinophilic esophagitis patients at her institution who got dilated. Dilation is the process of a balloon stretching your esophagus open when it’s too narrow. She had patients as young as six in her cohort that she described as having EoE strictures.
[5:49] Remodeling happens with younger patients but we’re not as good at finding it.
[6:08] Any type of inflammation in the GI tract can lead to some stiffening. The typical gastrointestinal disease that we think of as remodeling is Crohn’s Disease. An inflammatory process happens in the small bowel or colon that leads to narrowing and stiffness in the intestines.
[6:28] Also GERD (reflux) can lead to stricture, over time. It is just much more rare to see a GERD-induced stricture as opposed to EoE.
[7:13] We are not sure, but to some extent, we think of remodeling as not being reversible. Once there is a certain degree of stiffness, the esophagus does not seem to open up without these dilations. If you can control the inflammation, you can halt the stiffening. Maybe there is some degree of reversibility.
[7:44] In the Phase 2 dupilumab trials, investigators found that patients on dupilumab were seen to gain two millimeters in diameter of the esophagus, compared to the patients on placebo. We may be able to prevent some remodeling if we catch it soon enough. More research is needed.
[8:33] Dr. Muir tells of the work she is doing in her lab. They take biopsies from patients and grow collagen-secreting fibroblasts in a dish. The research is to find out what calms the fibroblasts down from actively secreting collagen.
[9:22] It’s tough to follow the symptoms of EoE when patients only have difficulty swallowing foods that are hard to swallow. If patients are not challenging their esophagus, they might not notice having daily trouble swallowing. It’s hard to ask a young kid who is eating a lot of soft foods if they feel like anything’s getting stuck.
[10:06] Dr. Muir will ask teenage patients, “Do you ever want to eat chicken? Do you ever want to eat steak?” A lot of times they don’t want to eat it, perhaps because it felt uncomfortable at some point in their life and they don’t want to eat it, not based on taste but on repeated bad events. It’s hard to tease out the symptoms, sometimes.
[10:27] Dr. Muir says, based on our Functional Luminal Imaging Probe (FLIP) studies, patients who had feelings of food that felt stuck in the last 30 days did seem to have a more narrow caliber esophagus. There is not a 100% correlation between symptoms and remodeling, but there seems to be some correlation.
[11:31] Ryan tells how patients have tendencies to get around their EoE symptoms, with a personal example of keeping food in his mouth and chewing it for a long time before swallowing. A scope would show he had bad inflammation of the esophagus. He had been diagnosed when young and was under treatment and on a restricted diet.
[12:26] Biopsies don’t always get a sample below the surface to check for fibrotic cells so it is hard to find remodeling with biopsies. There are some visual signs. Seeing rings or trachealization in the esophagus, or narrowing, can be signs that there is some remodeling under the surface.
[13:38] For kids who have a lot of trouble swallowing, Dr. Muir performs an EndoFLIP test regularly. The test catches subtle narrowing that may not be visible to the endoscopist. Doing this test gives the doctor more information and a better sense of the patient's phenotype, such as inflammation, the esophagus being stretchy, or being stiff.
[14:49] The EndoFLIP is a balloon with an imaging probe that includes a TV for the doctor to see how many millimeters the esophagus is in diameter as the balloon inflates along the whole body of the esophagus. It’s not an imaging test that goes to radiology. It’s a balloon that is blown up slowly with salt water and that gives this measurement.
[15:18] The EndoFLIP is a helpful tool to help determine who may have some more stiffening or determine exactly what the diameter of the esophagus is before starting treatment.
[15:33] One of the things that Dr. Menard-Katcher of Colorado, Dr. Ackerman of the University of Illinois, and Dr. Muir collaborated on was to look and see if they could find any markers in the esophagus that would relate to some of the things that are obtainable on biopsy or the esophageal string test.
[15:57] What they found was that periostin — a protein made by the epithelium and by the fibroblasts, which is known to activate fibroblasts, and is very high in EoE — seemed to correlate with the EndoFLIP measurements. This makes Dr. Muir think that there might be some potential for biomarkers to detect remodeling.
[16:16] The thing that everyone wants for this disease is to find a biomarker where we don’t have to do a scope. As far as finding a non-invasive biomarker, we’re not there, yet. There are some things going on at the tissue level that might clue us in on how distensible the esophagus is.
[17:18] The thing Dr. Muir worries about the most with long-term inflammation is that the esophagus is going to get more narrow over time. That will make patients more susceptible to food impaction (although not all patients with food impaction have a stricture).
[17:36] One worry is that the esophagus will get so narrow that an endoscope will not be able to pass a stricture. That will lead to more swallowing problems. That is what Dr. Muir hopes to be able to prevent as we get better at treating this.
[18:09] Any of the treatments that stop the inflammation and help get you below that “magical” 15 eosinophil count that we all strive for, will help prevent remodeling. So, once you get everything calm, hopefully, the remodeling process will stop. However, with the stiffening, the fibroblasts get more excited and have a hard time turning off.
[18:53] Simply turning off the inflammation will not turn off the fibroblasts. Many people within the GI space are looking at fibroblast-directed therapy, especially in Crohn’s disease, there’s a real need to prevent a lot of surgeries that are happening. Dr. Muir hopes to apply some of these to the esophagus, as well.
[19:16] In the study by Dr. Menard-Katcher, Dr. Ackerman, and Dr. Muir, there were 80 patients. Some were on swallowed steroid treatment and others were on an elimination diet. There were not enough patients on each therapy to find a significant difference in remodeling between the therapies. Patients in remission had better distensibility.
[19:44] Dr. Evan Dellon showed in a paper that patients who have sustained remission have fewer dilations, in the long term. While we don’t have a way to reverse the fibrosis that’s happened, we hope to prevent it from getting any worse. Dr. Muir’s research goal is to find something to calm fibroblasts down and prevent fibrosis or even reverse it.
[20:31] Dr. Muir explains that cells under the surface level are fibroblasts. When eosinophils and T cells come in and secrete antagonizing chemicals, the fibroblasts turn on and start secreting collagen. The fibroblasts also turn on when the epithelium is angry and inflamed. There is also evidence that surface cells can secrete collagen.
[22:46] Dr. Muir says it’s hard to know how far along in development some anti-fibrotic drugs are. We have many promising targets. Understanding how the remodeling happens is very important to be able eventually to treat this disease. Even though it seems like incremental progress, Dr. Muir believes research is moving the field forward.
[24:16] Dr. Muir says her EoE patients at CHOP are generous with their blood and tissue. Getting consenting control patients for lab studies involves a lot of leaps of faith and trust that scientists will grow your cells ethically. Dr. Muir feels lucky she has a good research team that explains things in lay terms to control patients.
[26:50] Dr. Muir’s team has videotaped pediatric EoE patients and control patients’ eating. The time EoE patients spent chewing and how long it took to swallow correlated to their esophageal distensibility measured by the EndoFLIP test. She believes that how we feed and the difficulty we have swallowing have to do with esophageal remodeling.
[27:41] That’s Dr. Muir’s next area of study. It’s being spearheaded by Dr. Kanak Kennedy, a fellow in Dr. Muir's lab, trying to figure out the relationship between pediatric feeding and remodeling.
[28:08] As part of their research, they are videotaping as many kids eating as they can. This involves many control patients who don’t have EoE. Another area of research is on the enzyme lysyl oxidase which organizes collagen into bundles and makes it stiff. She is looking into ways to decrease the organization of the collagen.
[29:08] Ryan thanks Dr. Amanda Muir for coming on the podcast and giving a crash course on remodeling and EoE.
[29:14] To learn more about eosinophilic esophagitis, visit apfed.org/eoe. To learn more about Dr. Muir’s research, read her paper.
[29:30] To find a specialist, visit apfed.org/specialists. To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections.
[29:47] Ryan and Holly thank Dr. Amanda Muir again for joining them. Holly thanks APFED’s education partners, linked below, for supporting this episode.
Mentioned in This Episode:
Amanda Muir, MD.
Children’s Hospital of Philadelphia (CHOP)
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.
Tweetables:
“I was able to start my own EoE clinic at CHOP as part of their Center for Pediatric Eosinophilic Disorders. I see patients who have eosinophilic gastrointestinal diseases and then I can go back to the lab and bring those questions from my clinic to the lab.” — Dr. Amanda Muir
“The thing that everyone wants for this disease is to find a biomarker where we don’t have to do a scope.” — Dr. Amanda Muir
“Any of the treatments that stop the inflammation and help get you below that ‘magical’ 15 eosinophil count that we all strive for will help prevent remodeling. So, once you get everything calm, hopefully, the remodeling process will stop.” — Dr. Amanda Muir
About Dr. Amanda Muir:
Amanda B. Muir, MD, Attending Physician, Children’s Hospital of Philadelphia, Research Institute. Dr. Muir investigates the mechanisms underlying esophageal fibrosis to improve therapeutic and diagnostic approaches.
Description:
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Moises Velasquez-Manoff, a health and science writer living with EoE. He is a contributing writer for the New York Times Magazine. He writes about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics. In this episode, Ryan and Hollyinterview Moises Velasquez-Manoff about his New York Times Magazine article and his search for help with his burning esophagus. They discuss his journey living with EoE, how he got diagnosed, and the treatments that help manage his symptoms. Moises speaks of various misdiagnoses he received that didn’t address his issues. After reflux was ruled out by a series of three tests, a biopsy during an endoscopy indicated EoE. Now on treatment, Moises is feeling much better.
Listen in for a powerful story of a decades-long search for help.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[:50] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces Moises Velasquez-Manoff, a health and science writer living with eosinophilic esophagitis (EoE). He recently wrote an article that was published in NY Times Magazine entitled, “The Mystery of My Burning Esophagus,” in which he documented his journey and diagnosis of EoE.
[1:51] Eosinophilic esophagitis (EoE) is a rare chronic allergic inflammatory disease of the esophagus. It is part of a complex group of diseases known as eosinophilic gastrointestinal disorders or EGIDs.
[2:05] Approximately one out of 2,000 people of all ages and ethnic backgrounds [in the U.S] are diagnosed with EoE, and people with EoE commonly have other allergic diseases, such as rhinitis, asthma, or eczema.
[2:20] Moises has had asthma for as long as he can remember. It was worse when he was a child and he sort of grew out of it. In adulthood, it was exercise-induced asthma. He has been allergic to sesame and peanuts for his whole life. They make him vomit. He has had eczema, hay fever, and alopecia areata.
[3:43] Moises has had problems with his esophagus since his 20s. He is 49 now and only got diagnosed with EoE about two years ago after his burning pain became very bad. It took about a year to rule out reflux, first by using high-dose proton pump inhibitors (PPIs). While on the medication, he still felt the horrible burning pain. He also had unusually bad side effects from the PPIs.
[5:25] After eight weeks of PPIs, an endoscopy showed his symptoms were almost gone. Moises believed he had reflux, but he still had the burning. His gastroenterologist suggested an alternative diagnosis, esophageal hypersensitivity, a pain syndrome from years of inflammation.
[8:21] Moises went to a second doctor who was an expert on EoE. They did a series of tests to rule out reflux. He did the Bravo PH test or reflux, a peristalsis test, a tube that was left in for 48 hours, and a barium swallow test. Each test was uncomfortable. These tests ruled out reflux.
[12:11] The doctor then believed it was esophageal hypersensitivity. The treatment was Cymbalta, an anti-depressant that also dampens pain signals. Moises was able to start eating again and started putting on weight that he had lost. A year after he stopped taking the PPIs, an endoscopy gave him the diagnosis of EoE.
[15:48] Reading Moises’s article triggered many memories and emotions for Holly. She experienced symptoms since she was a baby and saw around 13 specialists before she received a diagnosis of EoE in her early 20s. By that time her eosinophil levels were out of control and her esophagus was so rigid she needed several dilations.
[18:01] Moises had seen a gastroenterologist for reflux years ago and then two more doctors to get his EoE diagnosis. It was extreme pain that influenced him to seek the diagnosis. He also saw an ENT about sinus headaches, and he believes they were related to his EoE. He finally went to a doctor that specializes in EoE, just in case.
[23:08] Today, Moises manages his EoE with an off-label use of the asthma medicine budesonide taken twice a day. He mixes the solution into honey and drinks it, the honey helps the medicine stick to his esophagus. Moises worries about potential side effects as it is a steroid but at small doses.
[25:32] Ryan has taken the systemic steroids hydrocortisone and prednisone, as topical steroids were not effective for him. He was also on a restricted diet throughout his childhood. The diets didn’t clear up his EoE; the only thing that helped was high-dose steroids until he began taking a biologic after being diagnosed with eosinophilic asthma.
[28:56] The treatment Moises is taking for EoE is localized. There shouldn’t be any systemic effect. He believes if he took a biologic, he may see improvements in his other allergic conditions, such as eczema and his sinus condition.
[27:17] When his esophageal burning feeling was at its worst, Moises felt like he was suffocating. Doctors couldn’t explain it to him, but a research scientist told him that sometimes problems in one internal organ, like the esophagus, can confuse the brain stem, so it reads the problem as coming from another organ, like the lungs or the heart.
[29:23] What helped with Moises’s gasping attacks was the neuromodulating medicine, the anti-depressant, which changed how the nervous system perceives what’s happening, lowered the ability for pain signals to be transmitted, and calmed his nerves.
[30:53] Ryan talks about drugs being prescribed off-label when there is anecdotal evidence that they can improve symptoms of other disorders. Some EoE patients use the asthma medicine budesonide as a topical treatment of the esophagus. It is mixed into a slurry with Splenda and swallowed. Dupilumab was originally approved to treat eczema and has recently been approved to treat EoE.
[31:40] Ryan is on benralizumab, a biologic, for eosinophilic asthma but as a side effect, it has also been helping his EoE. He doesn’t need systemic steroids anymore for his EoE. After seeing positive benefits from the biologic, he weaned off the steroids. His parents, who are doctors and involved in APFED, helped him through the process.
[34:40] Moises tells how he came to write the article for New York Times Magazine. While he was suffering, he was not considering writing about it. When he finally got his diagnosis and was feeling better, he read an article another science writer published about their journey with a pain condition and was inspired to help other people by writing about his own journey. His first draft was more intense than the finished piece.
[37:09] Holly describes the article as very powerful. She felt she was going through it with Moises. She could feel what he was describing as he searched for answers. She appreciates him writing it. Moises says people have written to him from around the world that related to his story.
[40:43] Some even asked Moises about where they could find an EoE specialists, and Ryan mentions APFED’s Specialist Finder. To find a specialist who treats eosinophilic disorders, go to APFED.org/specialists. Also, please check out Moises’s article in these show notes.
[41:19] As a science writer, Moises has written a lot about the microbiome and its relationship to allergic disease and autoimmune disease before he noticed that this was happening to him. He had written a book, An Epidemic of Absence, 11 years ago about the root cause of these debilitating disorders and why allergies are increasing.
[42:51] Moises believes that the human microbiome has been impoverished by our modern environment and diets and that has led to an increased risk of allergic conditions. Moises gives the example of European farmers, who live in a rich microbial environment and have fewer allergic and autoimmune conditions.
[44:39] Moises says the research also shows that antibiotics early in life increase the risk of asthma, EoE, inflammatory bowel disease, and colon cancer. The more you take, the greater your risk. They have done research with animals, knocking out key microbes and seeing an increase in these diseases.
[45:33] H. Pylori is associated with ulcers and stomach cancer, but everyone used to have it, and it is common in the developing world. Research indicates that h. pylori changes how your immune system works. Unless you kill it with antibiotics, you have it for the rest of your life. If you have h. pylori, your EoE risk goes down.
[46:32] If you are breastfed, that also reduces your risk of EoE. Breastfeeding is thought to cultivate a healthy colony of microbes in the infant’s gut. Moises credits the microbial deprivation hypothesis for the increase of allergies and autoimmune disorders. There won’t be a treatment for microbial deprivation anytime soon.
[47:18] Holly and Ryan thank Moises Velasquez-Manoff for coming on the podcast and allowing them to interview him today about his patient experience and background. Moises thinks it’s crazy how much good evidence there is that EoE has increased in prevalence. Unpublished results show that EoE incidence is approaching 1 in 1,000.
[48:45] To learn more about eosinophilic esophagitis, visit apfed.org/eoe. To find a specialist, visit apfed.org/specialists. Ryan recommends reading Moises’s article. To connect with others impacted by eosinophilic diseases, join APFED’s online community on the Inspire Network at apfed.org/connections.
[49:13] Ryan and Holly thank Moises Velasquez-Manoff again for joining them and invite listeners to read Moises’s article. They close by thanking APFED’s education partners, linked below, for supporting this episode.
Mentioned in This Episode:
NYT Magazine article by Moises Velasquez-Manoff: “The Mystery of My Burning Esophagus”
Early-life environmental exposures interact with genetic susceptibility variants in pediatric patients with eosinophilic esophagitis
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.
Tweetables:
“I have had problems with my esophagus probably since my 20s but I only got diagnosed [with EoE] about two years ago after things started getting really bad.” — Moises Velasquez-Manoff
“I could not tolerate the PPIs, even though they worked very well to lower my eosinophil counts. But I could not handle the side effects. So we moved to swallowed budesonide slurry. … an off-label treatment.” — Moises Velasquez-Manoff
“Science takes a long time, sometimes.” — Moises Velasquez-Manoff
About Moises Velasquez-Manoff
Moises Velasquez-Manoff is a contributing writer for The New York Times Magazine and author of An Epidemic of Absence: A New Way Of Understanding Allergies And Autoimmune Diseases. He's written a lot about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics. He lives in California. Website: Moisesvm.com
NYT Magazine article: “The Mystery of My Burning Esophagus”
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