While most people have heard about being gluten-free before, not everyone knows what having celiac disease really means. Celiac disease is an autoimmune condition where the immune system reacts to gluten, causing damage in the small intestine. With celiac, eating gluten triggers an immune response to the gluten protein in your small intestine. This response damages the lining of the small intestine and prevents it from absorbing nutrients.
Gluten itself is a protein that is found in wheat, rye, and barley. This means that foods like pasta, bread, and crackers will contain gluten. Gluten can also be found in sauces or beverages such as soy sauce, or drinks containing malt. It can even be hiding in a lot of things you wouldn’t expect, like Twizzlers or imitation crab.
My journey with celiac started early in my life—I was diagnosed when I was four years old. Sadly, I don’t remember a lot before having to stop eating gluten. Right after I got diagnosed, I remember my parents buying a plethora of gluten-free cereals to make me feel better about all the foods I was losing. There were at least 6 boxes of Nature’s Path cereal sitting on the counter, gorilla munch, panda puffs, koala crisp… the list goes on and on.
They had to sit me down and tell me about all these new restrictions and foods that I couldn’t have. I can’t have imagined that it would be an easy task to tell a four year old she can’t have chicken nuggets any more. Ultimately, I think getting diagnosed early was the best for me. I was able to easily get the hang of the new diet I had to live by, and I have rarely found it difficult to eat this way. Not knowing what “real” pizza and pasta taste like makes it pretty easy to not be tempted by it too.
After I got diagnosed, my whole family went in for blood testing. Celiac disease is often genetic, and it is more common for a person to have it if a family member also does. My mom and my sister both tested positive, while my dad and brother both tested negative; however, both carried the gene for it. With three-fifths of the household now gluten-free, my mom enforced a strict gluten ban on the house. Everything was to be gluten-free from that point on.
Cross-contamination is another big part of living with celiac disease. Although a food can be specially made as gluten-free, if anything touches it, or if it is put on a contaminated pan or fryer, it becomes no longer safe to eat. Cross-contamination is sneaky, and it can be hard to tell if something has had contact with gluten. Growing up in a special “no gluten” household was perfect for this, ensuring that there were no chances of getting sick. I didn’t realize how much of a luxury this was, nor how privileged I was to have this until I got to college.
My freshman year at Temple, I was made aware that it is required to have a meal plan. We have a couple dining options to choose from here. There is one dining hall, Esposito Dining Center in Johnson and Hardwick Hall; a food court with different restaurants like Chick Fil a and Twisted Taco; and another food court with restaurants like Panda Express. Coming into school, I knew my options would be limited, but I didn’t realize just how limited they would actually be. The dining hall operated through different stations, each of which served different food. There was only one station that was certified to be allergy friendly. This meant that it was gluten-free, dairy-free, and nut-free.
While I know that beggars can’t be choosers, more often than not I was disappointed with the meals that were provided for me. They served the same thing almost every day for lunch. Cubed plain chicken and rice with vegetables available for stir fry gets boring after a while. I tried to get food from other stations in the dining hall, but a lot of the time there wouldn’t be allergy markers saying what was safe, and I could never be confident about whether or not there had been cross-contamination.
Sometimes, even if things had been labeled gluten-free, I would find myself getting sick after eating them. For example, I’ve been fooled by the BurgerFi in the student center food court more than once. Despite having a gluten-free bun on their menu, I doubt they are careful with cross-contamination—and I personally have been left incapacitated. I was sick a lot my freshman year and I constantly had stomach aches. By the end of the year I was more than ready to be done with the dining hall.
Coming into my second year at Temple, I moved into an apartment with 3 other roommates. I was so excited to be able to cook for myself and not have to rely on a dining hall for all my meals. Something that I really had to prioritize was being careful about cross-contamination in my own space. Coming from a strictly gluten-free house, I almost never had to worry about coming into contact with gluten at home. In my college apartment, I had a separate toaster oven, and made sure to label every food or condiment that had to be kept separate from my roommates’. It is taxing to be worried about getting sick in your own home, but it is much better than having to rely on a dining hall where you don’t always feel safe eating. Living with others that have no food allergies, I find that having frequent conversations and maintaining an open dialogue about celiac is the easiest way to make sure I feel safe in my space—and that I won’t get sick. I still stay vigilant too, cleaning all my spaces and keeping my food separate.
Getting sick with celiac disease comes with a lot more than just feeling run down. If you ingest gluten, digestive symptoms range from nausea, vomiting, diarrhea, fatigue, and weight loss. Additionally, symptoms can include headaches, brain fog, mouth ulcers, anemia, and loss of bone density. When I eat gluten, I find I experience a plethora of different symptoms, and it knocks me out for at least 12 hours. Not every experience is the same, and the pain and discomfort I feel varies based off of what has gotten in my system.
Having celiac disease and not knowing or continuing to eat gluten can lead to multiple complications down the line. If not treated properly, it can lead to malnutrition, infertility, bone weakening, and several different types of cancer.
And for all my college students with celiac: no matter how difficult it gets to find options, try to avoid gluten at all costs and be an advocate for yourself! If you feel unsatisfied with the dining options at your school, look into contacting them and voicing your concerns. Finding what accommodations might be available for you is always a good idea, and hopefully you can have a better first year experience than I did.