Handy Checklist: Going to College with an Eosinophilic Gastrointestinal Disorder

It is that time of year when high school juniors are starting to think about college visits and life after high school. The college search can be stressful, and having an eosinophilic gastrointestinal disorder (EGID) can add an extra layer of complication when trying to figure out how to live independently at college with a restricted diet or food allergies. They might be far away from home, in a new place with unfamiliar medical providers, meals from a dining hall, and a bunch of new people who say, “eosino-what?”

Because of this, I thought it might be helpful to put together a list of things to consider as you’re embarking upon this next phase of your life.

Taking Charge of Your Own Care

First things first, start practicing the skills needed to manage a chronic illness away from home while you’re still at home. Spend the rest of the time before college becoming familiar with your medical history and treatment plan. During your younger years, your parents probably did or are still doing most of the work; making appointments, refilling prescriptions, and talking to the medical team. But the more practice you have doing this with the support of your parents with a familiar care team, the easier it will be when you leave to go on your next adventure.
Start to keep track of your own appointments, set up automatic reminders for your prescription refills or medical supplies, and become familiar with your medical history.
Be an active participant in your medical appointments, describe your symptoms, and take notes if needed.
Summarize your important medical information into a binder that you can take with you.
At home, if you have favorite meals someone prepares for you, start helping to make them, and collect the recipes.
Make sure you know how to read food labels, which medicine is which and how to take them, and where your favorite prepared allergen-free snacks come from.
Start practicing speaking with waiters at restaurants now.  It can be a little uncomfortable at first to ask to speak to wait staff or the chef about your dietary restrictions, but the more you practice, the easier it gets. You can type up your restrictions on a card to give to the restaurant for reference, or explain it to them.

Planning for the Essentials

In addition to the long list of questions college-bound students and their parents have for college visits, having an eosinophilic disorder adds a few extras. Although this list is not exhaustive, three areas are important: housing, dining services, and local medical care.

Housing

Find out if most freshman live on-campus or off-campus. If you’re living off-campus in an apartment, you’ll have more control over your living space, and your own kitchen. This means you’ll need to do most of your own meal preparation.
If you are planning to live on campus, learn about the room options offered. Some schools offer multi-room suites with private bathrooms or even small kitchens.

Dining

Find out if you can choose your roommate(s), and if you can talk to them in advance about your dietary restrictions or food allergies.
Ask if there are single room options, which can reduce some of the worry related to having a roommate who may not be as mindful of medical needs.
Most college housing options offer space for a small microwave and refrigerator for storing/heating safe foods. There may also be a full kitchen in the residence hall.
Do a little research on the surrounding area of the colleges you are visiting to find out if they have local stores that can order specialty or allergen-free foods for you to keep in your room. Schedule a meeting with the head of dining services at the colleges you are visiting, or if you prefer, once you get your list narrowed down to your favorites.
Ask how they handle allergens and cross contamination in the kitchen, and whether they can prepare specialty meals for students with food allergies and dietary restrictions. Many colleges are now food-allergy friendly, and happy to accommodate a student’s individual needs.
If you will be doing tube feeds, keep this in mind during your college visits and be thinking about how far the residence halls are from classroom buildings and the dining hall.

Local Medical Care

Finally, start thinking about where you will get your medical care.
If you are attending college close to home, you might continue medical care with your current team.
If you’re heading further away, talk with your providers about whether you should visit a local medical provider near your college, or get care at the student health center.
If you’re able, stop in to the student health center to find out if you can see one provider who will become familiar with your medical history, or if you will be seeing different providers depending on who is available. If you’re familiar with a section 504 plan and have one in high school, you also qualify for one in college, if the college receives any type of federal funding. This is a helpful way to document your dietary, medical, or learning needs for the college to have on file.
To learn more about our Division of Gastroenterology, Hepatology and Nutrition, or to schedule an appointment, please call 513-636-4415 or email us at gastro@cchmc.org.

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Nicole Zahka, PhD

About the Author: Nicole Zahka, PhD

Nicole E. Zahka, PhD, is a pediatric psychologist at Cincinnati Children’s. Her practice includes children and adolescents with chronic medical conditions and anxiety disorders, with a specialty in assessment and treatment of conversion and functional movement disorders, as well as syncope and eosinophilic gastrointestinal disorders.

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Comments

  1. eosmomma August 08, 11:00
    Thank you for this article! So many great pointers here. Greatly appreciate your insightfulness!