• Navigating Eosinophilic Esophagitis in College with Kate Goncalves

  • Oct 24 2024
  • Duración: 34 m
  • Podcast

Navigating Eosinophilic Esophagitis in College with Kate Goncalves

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  • Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, interview Kate Goncalves about her diagnosis and treatment journey with EoE. In this episode, Ryan and Mary Jo discuss with Kate Goncalves how she lived with her symptoms for years before finally bringing them to the attention of her primary care physician at age 16, and how she was connected with a gastroenterologist and diagnosed with EoE. Kate discusses her transition from pediatric to adult care, and how she and her care team prepared for her to travel to go to college. They talk about her treatment plan of eliminating milk and using medications, and how it is a challenge to navigate EoE during the long days on her college campus. Kate also talks about the EoE research project she is working on as part of her pre-med studies, and shares advice for people living with EoE and going away to college. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Ryan Piansky introduces the episode, brought to you thanks to the support of education partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Mary Jo Strobel. [1:31] Mary Jo introduces Kate Goncalves, a 20-year-old living with EoE. Kate is the 2024 recipient of The APFED Abbott College Scholarship, thanks to a grant from Abbott, the makers of the EleCare® brand elemental formula. [2:05] Kate is from a small town in Connecticut. She is a junior at Vanderbilt University, studying biology and anthropology. She grew up with day-to-day symptoms of EoE but only expressed the symptoms to her doctor when she was 16 years old. [2:23] At that point, she underwent testing and was diagnosed. Since then she has been trying to find a treatment plan that works for her. She has navigated changes in her treatment plan while going away to college. She comments that, in college, you don’t always have control over the food you eat. [2:42] It has been a challenge but she has a great support system and care team. [3:15] In middle and high school, Kate got a food impaction nearly every day at lunch. She thought it was normal. When she finally brought it up to her primary care physician, the doctor suspected EoE. She also had the symptoms of heartburn or acid reflux. [4:15] Kate immediately had an endoscopy scheduled and was then diagnosed with EoE. [4:22] Prior to a diagnosis, Kate coped with symptoms by drinking “a ton” of water with foods to help them go down her esophagus, which was narrowed from scarring. She also avoided bread and meats. She only recognized these as adaptive behaviors after she was diagnosed. [5:32] Kate was referred to a gastroenterologist. That doctor is still part of Kate’s care team. She also saw a nutritionist when looking for a treatment plan that worked for her. [6:02] Kate avoids anything with dairy in it. Her elimination diet removed anything made with butter, milk, yogurt, and more. At her follow-up endoscopy, her eosinophils were way down so she didn’t have to go through the six-food elimination diet. She was very grateful. [6:43] Mary Jo clarifies for listeners who may not be familiar with the six-food elimination diet, that the foods removed from the diet are typically milk, egg, wheat, soy, peanut/tree nut, and fish/shellfish. [7:05/] Kate says it was a tough transition because more foods than you might expect have milk in them. She is grateful she didn’t have to cut out gluten or nuts. [7:32] Kate admits that sometimes she knows there is dairy in the food and eats it anyway. Then the symptoms are most often severe acid reflux and heartburn. She’ll get a food impaction if she’s been eating dairy for days or a lot of it at once. [8:35] At school, sometimes the dining hall workers aren’t aware if a food has dairy in it. Some foods are mislabeled as vegan. So Kate often has dairy without knowing it until symptoms appear later. [9:12] Kate is on a proton pump inhibitor twice a day and a steroid medication. Her first treatment was the elimination of dairy. The summer before going to college, she was also put on these two medications, in case she was exposed to dairy. [10:50] Kate had to switch from one steroid medication to another because the first one wasn’t working for her varying schedule. She asked her doctor for another medication that fit her schedule better. [11:31] Kate is very grateful to feel autonomy over her treatment plan. She feels her gastroenterologist is amazing. Kate is ...
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