Speaking Up: How to Ensure Your Gluten-Free Needs are Met on Campus

Stories and Advice from Gluten-Free Students

By Teresa Dickens

I was diagnosed with type 1 diabetes when I was four years old. By the age of ten I had probably spent more time in a doctor’s office than people twice my age. It is essential for diabetics (really anyone with an autoimmune disease) to be screened for other autoimmune diseases because once you have one you are more likely to have another. In fifth grade I was diagnosed with celiac disease, which meant my whole family had to be tested. This is when my twin sister, who seemed to have chronic stomach pain for years (and was never tested for celiac disease before) was diagnosed as well. In the beginning it was hard. Fifth grade seemed to be the year of the pizza party which was, well, almost torture for the ten year old (me) who would never be the one to turn down a slice. Being the timid young girls that we were, my sister and I were constantly embarrassed by our gluten-free diets. Our friends did not understand it. Simultaneously dealing with my diabetes made things even trickier.

Teresa Dickens and sister

That’s me on the left and my twin sister
on the right.

As years passed, dealing with celiac disease has become easier as more and more restaurants offer gluten-free options, more people are becoming aware of the disease itself and tastier gluten-free treats are being produced. Living at home in an entirely gluten-free household also made things easier for us. Then in August of 2011, we began our college careers … and it was a completely different story. Before going to college, my mother went with us to both of our schools (Lehigh University with my sister and Muhlenberg College with me) to have meetings with the dining hall staff. Muhlenberg is a small school with only one dining hall. They labeled gluten-free foods and even had a dedicated toaster and microwave for people that had to follow a gluten-free diet. My sister had a completely different experience. Lehigh University is a much larger school compared to Muhlenberg and has many different dining halls. There were few labels and no dedicated gluten-free areas. Needless to say, finding options was difficult for her.

I’ll be honest. Sometimes following a gluten-free diet in college can be a pain. One of the biggest challenges I faced was dealing with the wait time. We all know that making gluten-free alternatives takes longer. By the time my gluten-free pasta would be ready, my friends would be done eating their dinners. With a busy college schedule, waiting fifteen minutes for someone to cook your pasta is just not practical. For those of you just starting out, I highly suggest getting to the dining hall 10-15 minutes before your friends do. That way, you can order your food and actually eat with them instead of standing at the counter waiting.

I’m lucky to have gluten-free options available on campus, but there are still some pitfalls. As time went on, Muhlenberg’s dining system became complacent with their gluten-free options. They are great with labeling the options, but they are offering the same meals every week. Tired of eating the same thing constantly, I met with the dining hall staff and they assured me that there would be improvements to their gluten-free offerings when I return to school in the fall. (Fingers crossed!)

I am asymptomatic with my celiac disease, so if I ingested gluten, I doubt I would ever even know. People sometimes wonder if I have no symptoms, why do I bother following my gluten-free diet? Aside from the fact that long term intestinal damage can lead to serious complications, I have my diabetes to worry about, too. The malabsorption that occurs when I ingest gluten means that I am not acquiring all of the carbohydrates that I am taking insulin for, which is very dangerous. I have no choice but to follow a strict gluten free diet. Even if I didn’t have diabetes, the damage that could occur internally by not following a gluten-free diet is not worth it. (Always remember that a gluten-free diet is necessary for your health. You’re not a picky eater, just managing your autoimmune disease in the only way you can.)

So what are my suggestions for dealing with your gluten sensitivity or celiac disease in college? Meet with the directors of your dining hall to discuss gluten-free options and don’t be afraid to suggest ways they can make your experience (and the experience of other gluten-free students) easier. Chances are, they want to help, but they might not know how. (It’s ok to tell them!) If you have a question about the “gluten-freeness” of a food, ask it. Better safe than sorry. Don’t be embarrassed. You cannot control the fact that you have this disease, but you can control how you deal with it. I was lucky to have my twin sister to go through this with me, but there are also blogs and forums that can give you helpful information as to how to deal with celiac disease in college.

If you take one thing away from this post, let it be this: Don’t be afraid to speak up! If you don’t educate people about your needs, they’ll never be able to accommodate them. So, advocate for your own health and I think you’ll be pleasantly surprised by the results!

– Teresa