Living with Celiac Disease as a Student
“Fancy breakfast and a study session?” “Let’s go out for dinner. I don't feel like cooking.” “Spontaneous weekend trip to london…or even Paris?!” “We’re cooking a flat meal!” “I haven’t seen you in ages, wanna grab lunch or ice cream!”
Ah, food. It’s such a huge part - and a necessary one - of all of our lives. However, in university, spur of the moment, food-based outings seem to be the gold standard for a successful, fun hangout. Indeed, most people I know are just looking for the next place to pick up some free food; they're more likely to head to the Freshers’ Fayre stalls that have inviting cookies and cupcakes, they attend society events with provided pizza and are always suggesting we travel and try new places to eat. For some of us though, food will never be associated with freedom.
I have celiac disease, an autoimmune disease (nope, despite all-too-common misconceptions, this is not an allergy, a fad diet or a lifestyle choice). When a person with celiac disease eats 1/64th of a teaspoon or more of gluten, or a food that has come into contact with any gluten at all, the body’s immune system attacks the hairs in the small intestine called villi, which are responsible for proper digestion and nutrient absorption. In simple terms, we’re talking a full fledged launch of my body attacking itself if you stick my gluten free bread in a toaster used for gluten bread.
Honestly, getting a degree while managing a disease is akin to attempting to captain a rocketship right after you pass your driving test: you can feel out of place and downright unprepared to maneuver all the new situations and combinations you are presented with. Personally, I live in a studio with my own kitchen (I know how lucky I am to say this) that I and my mom have scrubbed until day’s end to make celiac safe. Others with the disease that I have met in St Andrews have told me one too many horror stories about their halls feeding them beans and potatoes and taking away the gluten free toaster citing “not enough people need it”. In that same vein, those on a strict GF diet that live with others without the disease have noted flatmates using their dedicated pans with the excuse that they simply didn’t want to wash their own at the time. So, you might hear people throw the label ‘celiac disease’ around lightly because this is not a disease that is taken seriously. Why? I’m not sure. I can’t count the number of times I’ve heard the “oh I’m sure I have that too '' or “a little cake won't hurt you” comments. But this disease is no joke at the best of times, especially when you’re trying to navigate it in a university space during a time when manageable stress should only be coming from school work or extracurriculars. When you have a disease at this age, however, university life can't help but revolve around thoroughly-thought-out plans and backup plans, well as a raging anxiety for the unrelenting unknown.
Take some St Andrews’ traditions for example. The pier walk in September 2021 was probably enjoyable enough for the vast majority of students, standing amongst a forest of red gowns moving excitedly forward into a less-covid-afflcited future, but for me it was totally miserable. On a ‘fun’ new medication trail, I shuffled along with a friend and her flatmates, whom I was meeting for the first time and was trying my best to make a good impression. Wondering to myself, “Is this an ulcer?”, the stomach ache that plagued me will always be how I remember my first St Andrean milestone. Additionally, Raisen with its family meals, beer and feasting, poses a significant threat of that familiar stress reaching a boiling point. Indeed, going on any kind of trip consists of packing a spare suitcase with GF instant oatmeals and emergency snacks complete with utensils and paper plates, because that’s how life is for us.
When I go out on trips with friends or my boyfriend, you might think suitcase essentials would be limited to underwear, chargers, toothbrush and layers, but Imodium comes to mind for me. If I’m going to a restaurant with friends, I wonder how I will get away with painstakingly sipping my water at a new place I haven't vetted, but then again, that could draw just as much attention as my hundreds of questions about food preparation, shared chopping surfaces, different pasta water and foil on oven racks does. It’s not only the social side of things that I fear, but also worry and anxiety amid symptom flares. For many students with disabilities and/or chronic conditions, the move from Teams tutorials and Panopto lectures, attended from the comfort of our own spaces, beds or, yes, even bathrooms, to theaters and oval tables is overwhelming and panic inducing. I already feel the old fear of missing classes that will soon not be available for later viewing, and I feel this is a perspective silenced or ignored or not even considered by many.
A saving grace amid all these isolating thoughts and experiences that are simply too much for one person to deal with has been the introduction of the St Andrews’ gluten free society, founded in 2021 where a group of us gluten-free folk meet up to eat, talk and share experiences. Some particular moments I’ve overheard have reminded me that while this can be and even should be a very personal disease in some cases, it’s others’ comments, from those without the disease, born from misunderstanding and ignorance that really take the psychological impacts of this debilitating disease to another level. Common conversations in the society include:
Person A: “I used to work in a restaurant and I don't think the other staff knew I was gluten free because I doubt they would have said these things around me. Whenever someone would come in with a dietary restriction, request gluten free or make an amendment to their order, servers and chefs would complain so much about the hassle, thinking these people were just being annoying or dramatic.”
Person B: “Ugh yeah I know. I just feel so bad! I’m like please don’t spit in my food. I wish I didn’t have this too!”
Person C: “You know sometimes I'll just risk it! Especially if I’m out with friends or a group…I don't want to have to say the whole speech, it’s just so awkward.”
I wouldn’t dare count the amount of texts I’ve gotten from one of these members letting all of us know they have been “glutened,” or “glutenated” as my boyfriend has come to affectionately refer to my reaction to eating anything that gluten has merely touched, as if im a bomb being detonated. While everyone’s bodily reaction varies widely, and there is no one symptom that every person with celiac disease will inevitably exhibit after (hopefully) accidental gluten exposure, the gluten will harm each body in mostly the same way. Over time, if those of us with celiac disease continue to ingest gluten, we become more and more likely to develop intestinal lymphoma, fertility issues, osteoporosis, anemia, other nutritional deficiencies and dental issues, to name a few. What I’m trying to say is this disease is no joke, nor should it be played with by any person who has it, least of all laughed about or brushed off by outsiders.
While I am so grateful that the strict gluten free diet I live my life with has helped me reverse the damage to my small intestine, autoimmune diseases, even this relatively common one, are far from being truly understood. Most days, I still feel sick. I have consistent digestive symptoms, which come with their own mental health impacts due to the shame, embarrassment, and silence society has created around simply going to the bathroom. When people ask me what’s wrong with me, I’ll brush it off as something to do with my bladder or nausea, because those feel more acceptable. What struck me most this past year about being surrounded by others with celiac disease in GF society is that our health is oftentimes as much in the hands of others as it is in our own. While we can give our diet, advocating for ourselves and educating others 100% of our best effort, we cannot support ourselves alone. If those around us were more willing to ask us our stories, really listen, and spread that education and compassion wherever they go, I could only dream about the incredible, powerful impact we all could have on the food industry and on acceptance of disease more broadly.