Navigating Eosinophilic Esophagitis in College with Kate Goncalves

Real Talk: Eosinophilic Diseases

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, interview Kate Goncalves about her diagnosis and treatment journey with EoE.

In this episode, Ryan and Mary Jo discuss with Kate Goncalves how she lived with her symptoms for years before finally bringing them to the attention of her primary care physician at age 16, and how she was connected with a gastroenterologist and diagnosed with EoE. Kate discusses her transition from pediatric to adult care, and how she and her care team prepared for her to travel to go to college. They talk about her treatment plan of eliminating milk and using medications, and how it is a challenge to navigate EoE during the long days on her college campus. Kate also talks about the EoE research project she is working on as part of her pre-med studies, and shares advice for people living with EoE and going away to college.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Ryan Piansky introduces the episode, brought to you thanks to the support of education partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Mary Jo Strobel.

[1:31] Mary Jo introduces Kate Goncalves, a 20-year-old living with EoE. Kate is the 2024 recipient of The APFED Abbott College Scholarship, thanks to a grant from Abbott, the makers of the EleCare® brand elemental formula.

[2:05] Kate is from a small town in Connecticut. She is a junior at Vanderbilt University, studying biology and anthropology. She grew up with day-to-day symptoms of EoE but only expressed the symptoms to her doctor when she was 16 years old.

[2:23] At that point, she underwent testing and was diagnosed. Since then she has been trying to find a treatment plan that works for her. She has navigated changes in her treatment plan while going away to college. She comments that, in college, you don’t always have control over the food you eat.

[2:42] It has been a challenge but she has a great support system and care team.

[3:15] In middle and high school, Kate got a food impaction nearly every day at lunch. She thought it was normal. When she finally brought it up to her primary care physician, the doctor suspected EoE. She also had the symptoms of heartburn or acid reflux.

[4:15] Kate immediately had an endoscopy scheduled and was then diagnosed with EoE.

[4:22] Prior to a diagnosis, Kate coped with symptoms by drinking “a ton” of water with foods to help them go down her esophagus, which was narrowed from scarring. She also avoided bread and meats. She only recognized these as adaptive behaviors after she was diagnosed.

[5:32] Kate was referred to a gastroenterologist. That doctor is still part of Kate’s care team. She also saw a nutritionist when looking for a treatment plan that worked for her.

[6:02] Kate avoids anything with dairy in it. Her elimination diet removed anything made with butter, milk, yogurt, and more. At her follow-up endoscopy, her eosinophils were way down so she didn’t have to go through the six-food elimination diet. She was very grateful.

[6:43] Mary Jo clarifies for listeners who may not be familiar with the six-food elimination diet, that the foods removed from the diet are typically milk, egg, wheat, soy, peanut/tree nut, and fish/shellfish.

[7:05/] Kate says it was a tough transition because more foods than you might expect have milk in them. She is grateful she didn’t have to cut out gluten or nuts.

[7:32] Kate admits that sometimes she knows there is dairy in the food and eats it anyway. Then the symptoms are most often severe acid reflux and heartburn. She’ll get a food impaction if she’s been eating dairy for days or a lot of it at once.

[8:35] At school, sometimes the dining hall workers aren’t aware if a food has dairy in it. Some foods are mislabeled as vegan. So Kate often has dairy without knowing it until symptoms appear later.

[9:12] Kate is on a proton pump inhibitor twice a day and a steroid medication. Her first treatment was the elimination of dairy. The summer before going to college, she was also put on these two medications, in case she was exposed to dairy.

[10:50] Kate had to switch from one steroid medication to another because the first one wasn’t working for her varying schedule. She asked her doctor for another medication that fit her schedule better.

[11:31] Kate is very grateful to feel autonomy over her treatment plan. She feels her gastroenterologist is amazing. Kate is always free to give feedback about how she is feeling.

[11:46] Kate feels a more present role in her medical appointments now, versus before she was diagnosed. Both with her gastroenterologist and her primary care physician, she has learned to be comfortable being forward and truthful with her doctors.

[13:16] For patients who have not learned to speak up to their care team, Kate suggests being patient. It takes time to get used to the structure of appointments, follow-up appointments, and appointments with a new doctor.

[13:25] When Kate transitioned from her pediatrician to her adult doctors it took her a while to become comfortable with her gastroenterologist and her primary care physician. Don’t be afraid to pose questions and concerns, even questions about other treatment plans.

[13:56] Your doctors are there to listen to you and to help you, and you can only gain from bringing something up to your doctor that you are afraid to bring up or that you aren’t sure how the conversation is going to go.

[14:47] Kate explains how she tells her friends about her EoE triggers and symptoms and what eosinophils do to her esophagus. Most of her friends study biology and the immune system, so they can understand her condition and needs.

[16:12] EoE impacts Kate’s social life. Kate sometimes sits out of activities involving dinners or events with food present. She doesn’t want to be exposed to a trigger food. She has also missed events and activities due to hospital visits and appointments.

[16:37] If Kate is having a flare-up of her symptoms, she will also miss activities. All these things lead to feelings of exclusion. No one she knows has EoE.

[16:55] Because of her treatment plan and her medications, Kate’s symptoms are somewhat limited so she can participate in activities as she chooses.

[17:14] Kate’s advice for people who know someone with EoE is to be open-minded. EoE is kind of an invisible disorder. People often think that being allergic to dairy is lactose intolerance, which it is not. Do some research about EoE and its effects. Offer support.

[17:42] A patient has a care team whose job is to care for them. When family and friends include you and care for you, it’s a very different feeling. As a friend, be patient and offer any support you can.

[18:34] When Kate travels, her best tool is communication. Informing food service staff about your allergy is the easiest way to ensure that the food you eat is safe. Kate does lots of research when she travels. This includes looking on restaurants’ websites for dietary restrictions.

[20:43] Kate prepared for college by making sure she had a full semester supply of medications and ensuring that she was in close contact with her medical care team over the phone and through MyChart.

[21:19] She made plans with her gastroenterologist to make sure that if anything did come up or if the treatment plan wasn’t working in the college setting, they would talk it through when it was needed and not wait until she was home for Thanksgiving.

[21:54] Kate is thankful she chose a school that was connected to a hospital. She feels more safe and prepared for a bad food impaction. She knows she can seek medical attention and have a team on-site very soon.

[22:43] The quality of the dining at the college was a factor in Kate’s choice of schools. Vanderbilt has a dining hall completely free of the eight main allergens. When she eats there, she knows that the food she is eating will be safe, without having to ask.

[23:34] For people living with an eosinophilic disorder like EoE, Kate has two tips about preparing to go away to college. First, don’t feel limited by your disorder. At first, Kate was afraid of being far away from her care team, but she couldn’t be happier now.

[23:56] At college, there are resources and counseling to help you. Being away from home has taught Kate to be responsible as an adult for the treatment of her disorder. So, second, use college as an opportunity to gain responsibility in treating your disorder.

[25:11] Kate is working in a biomedical engineering lab at Vanderbilt University that is researching a way to diagnose and monitor EoE using saliva. They use Raman Spectroscopy to look for biomarkers in saliva from people with EoE, not found in the saliva of healthy people.

[25:51] A successful test would be less costly and quicker than an endoscopy with anesthesia. It would provide a point-of-care diagnostic that would lower the cost and increase the efficiency for patients.

[28:09] Raman Spectroscopy is a form of spectroscopy that measures the vibrational frequencies between chemical bonds. It reads the composition of biological samples. It can tell the amounts of lipids, proteins, or amino acids.

[26:37] The lab is researching the differences in the saliva of people with EoE from the saliva of healthy people. If they can find a difference, and if that difference is universal, we might be able to diagnose EoE using Raman Spectroscopy.

[26:55] Kate says that would be awesome because the anesthesia of endoscopy is “a lot”, every time.

[27:09] Kate is on the pre-med track, which includes doing research. She wanted her research to be on something that she cared about. She is happy to be at a school that is a top research institution.

[27:48] When she learned of this biomedical engineering lab researching ways to diagnose EoE, she immediately reached out to the Principal Investigator and was invited to join. She has been a part of the lab for over a year and it’s been an amazing experience!

[28:15] Before going to medical school, Kate plans to take one or two gap years after she graduates so she can further her research with EoE or with other eosinophilic disorders. She would love to see advancements in the field.

[29:16] Kate finds that the most challenging part of living with EoE is feeling lonely, She has never met anyone else with EoE. No one knows what it is when she first explains it to them. It’s not a super common disorder.

[29:35] Because EoE is a rare condition, Kate doesn’t have much of a community around it in her life. She was excited to learn about and connect with APFED through social media. Even so, it is easy to feel alone in her personal life.

[29:54] Kate doesn’t want to have to worry constantly about her food or when to take her medications. She wants to live like a normal, healthy college student, but she can’t. Sometimes she doesn’t take her disorder as seriously as she should.

[30:25] Sometimes Kate will have that ice cream because everyone else is having it. She wants to live as though she doesn’t have EoE. Navigating that without a community that relates to her struggle has been a challenge.

[30:51] Kate’s parents, siblings, and friends support her, but it’s not the same as having someone who completely understands and is going through it. She feels lonely.

[32:24] Kate says that awareness is super powerful. She went 16 years without knowing she had EoE. She wasn’t educated on it. She is sure there are many living with untreated EoE just as she was.

[32:42] Kate encourages anyone listening to spread awareness for eosinophilic research. People are struggling with it. Kate was super excited to come on the podcast today to share her story with anyone in college who might be struggling with EoE.

[33:05] Kate says, if you’re struggling with eosinophilic disorders, you’re not alone. I’m there, too! She encourages listeners to continue to spread awareness and advocate for eosinophilic disorders.

[33:13] Ryan and Mary Jo thank Kate Goncalves for joining the podcast episode to share her story and help spread awareness.

[33:19] For our listeners who would like to learn more about EoE, please visit APFED.org/EOE. If you’re looking to find a specialist who treats EoE, you can use APFED’s Specialist Finder at APFED.org/specialist.

[33:40] Kate thanks Ryan and Mary Jo for this opportunity.

[33:43] Mary Jo also thanks Bristol Myers Squibb, GSK, Sanofi, and Regeneron, APFED’s Education Partners who supported this episode.

Mentioned in This Episode:

APFED College Scholarship

Abbott

EleCare Elemental Formula

MyChart

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

“I go to school halfway across the country so I don’t have close access to my care team and support. … Knowing I was going to be exposed to some dairy, my GI doctor thought it was best to put me on the steroid medication.” — Kate Goncalves

“Your doctors are there for you. They're there to listen to you and to help you and you can only gain from bringing something up to your doctor.” — Kate Goncalves

“Feeling support from family and friends… you feel so included and cared for. Feeling that from friends versus feeling that from your care team… they’re very different. Your care team cares about you but that’s their job.” — Kate Goncalves

“I think anyone with a chronic illness would relate to this. I just turned 20 and I’m in college. I don’t want to constantly worry about the food I’m eating and when to take my medications. I want to live like my friends.” — Kate Goncalves