By Paul Graham
Going away for school, whether college or boarding school, is an exciting experience. In addition to being a writer with celiac disease, I’m an English professor, and every August, as the cars loaded with new students and their dorm necessaries pull onto campus, I can still feel the powerful mixture of emotions that I brought with me to college from my home in Maryland, which was eight hours away. I chose a school as far north as I could go in one day’s drive. It’s the college where I now teach, and in many ways, going there was the best decision of my life.
My college years would have gone differently if I’d brought celiac disease with me. No question. I wasn’t diagnosed until my thirties, but I’ve learned enough about the challenges of managing the gluten-free diet and educating friends and strangers to know that even in the most supportive places, remaining gluten-free can be difficult.
Seemingly obvious factors that can have a huge bearing on one’s college experience can also be easy to miss. For instance, what type of school? Small liberal arts college, or big state school? Based on my observations, I’d argue that someone is going to “feel” celiac disease less at a large state school than at a tiny private school—and yet, there are great reasons for attending both. Is the school close to home, or a day’s drive away? Homesickness, when it happens, can be amplified by a condition like celiac disease.
Many high school students in the college search process have very strong feelings where to go and how to pursue a college degree based on their inclinations and desires. While a condition like celiac disease should not limit any options, such a specific dietary need can help refine one’s approach to exploring college (or boarding school) options. Here are some important steps to consider taking:
Get Ahead Of It
Before school starts, or not long after, contact the school’s office of student life. This is a good place to begin because most other offices that pertain to everyday life on campus, from dining services to health and counseling services, are in contact with the student life office. Be up front about your needs. Take this as the first opportunity to advocate on your own behalf and speak up. You’ll be doing it for the rest of your life, after all.
Ask to talk to the director of food services. Ask how much experience they have in dealing with the needs of a gluten-free diet. Has the kitchen staff received training about cross-contamination? Have they been at all educated about celiac disease? Then go a step further, and ask what you can do to help them do their work better. Would they like suggestions for specific products you especially enjoy? Do they ever consider recipes from home (some schools actually do this)? Could you perhaps provide lists of commonly problematic foods?
Outside the dining hall, there’s been a big movement in recent years toward “accommodation offices.” Speaking to someone in this department could prove worthwhile, especially if conversations with food services don’t leave you feeling hopeful. Accommodations offices started as centralized places for strategies on dealing with learning disabilities like dyslexia, but their work also includes making arrangements for managing chronic illnesses, whether physical or mental. In 2013, the Department of Justice ruled that severe food allergies, including celiac disease, qualify as a disability under the Americans With Disabilities Act (ADA). After all, a medical need for a gluten-free diet, if not met, will impede a student’s ability to do good work—in the classroom, on the playing field, or in any other aspect of campus life.
Beyond these institutional resources, the good thing about going away to school is that nobody expects you to do it on your own. There are people who are paid to make your life easier, beginning with some of those you live with. Resident Assistants (known as RAs, in most residential colleges), and their superiors, often called Resident Coordinators (RCs), are responsible for the wellbeing of people who live in their buildings and floors and can be great resources. They’re the ones who are most likely to know about a campus celiac disease support group, if the campus has one.
Inventory Your Communities
College can feel like one big community, especially if the campus is a small one. But if you look more closely, the college experience is actually made up of lots of smaller communities through which students move quite fluidly. I see the amazing, chameleonic changes every day.
It helps, then, to know all of the smaller communities where being gluten-free could be a challenge. The dining hall is obvious, but what if a professor or student brings snacks to class? What about athletic teams, whether varsity or club (student athletes can rack up the meals on the road)? How about that late night layout session for the campus newspaper, when someone decides to get snacks? Are there any clubs or extra-curricular activities in which food will play even an occasional role? And what about studying abroad—not just the experience of communicating dietary needs (and consequences, if the needs aren’t met) in a foreign language at restaurants, but the homestays, the field trips?
A student with celiac disease or gluten intolerance shouldn’t feel as if any of these opportunities are closed to them. They should play hockey (after all, Max Domi is doing just fine). They should travel to Spain, or Australia, for a semester (think about all of those Food Network travel shows—there’s a whole world of rice and vegetables out there, if you know how to ask for it). You’ll just have to work a little harder, sometimes, to have these experiences.
The best way to make sure you’re included is to talk. Kind of incessantly, actually, though never obnoxiously. But talk to whom? To see just how many different sub-cultures and communities you belong to, make a list of all the different “contexts” in which you will eat with others outside the campus dining hall. Looking at a campus map of the buildings where you spend your time in a day, or a week, could be helpful, here. Include the frequency of meals you’ll eat in these different contexts (that helps to prioritize) and list the people in charge (coaches, faculty and staff advisors to clubs and organizations like the campus newspaper, etc). Whenever possible, speak to faculty and staff about the demands of the gluten-free diet, and not students. I’m not saying students wouldn’t be responsive. But they’re busy; they’re forgetful; and someone’s being paid to look after that team or club, and they’ll keep better track.
Then, just start moving through the list. Hopefully, you’ll find that someone cleared a path for you on the tennis team, or the Christian fellowship club, or the outdoor club; you’ll go to say something, and the person in charge will say, “We’ve got that; we’re used to providing gluten-free options.” If not, talking about the need to be gluten-free will be easier with each conversation.
It helps to back those conversations up with an email. Having it in writing, but also reminding people that you’ve talked, tends to make it stick. It also provides the chance to express gratitude for listening—always a classy thing to do that makes people want to help you.
Find Local Resources
This is where reading the environment where the school is located is really important. Colleges in cities and college towns are likely to have so many off-campus gluten-free options that the challenge won’t be finding good food; the challenge will be not going broke eating at the taco truck or the Thai noodle house every other day. Smaller colleges in rural areas—places where the year-round residents who live there can themselves struggle to find gluten-free options—are more of a puzzle for someone who goes to school there, especially if you’re used to a certain set of options back at home. A recent study in England revealed that culture shock often comes from sharp contrasts in what’s available to eat (as does homesickness, and even depression). You can fill the car with enough gluten-free favorites to last a few weeks, but what do you do when you run out?
I live and teach in a rural place that seemingly lacks good gluten-free options. Since being diagnosed four years ago, I’ve learned of every store and restaurant that has the best eats within twenty miles. I know which stores are overpriced; I know which have healthier options. I know who’s nice and who looks at you like you’re a problem. I also know that for college students, especially freshmen, leaving the “bubble” of campus to venture into these places can be intimidating. A few recommendations can go a long way.
Last year a student with celiac disease walked up to me on the first day of class and introduced herself. She knew about my writing on celiac disease, and, admirably, just came right out and asked me where I shop. I immediately pointed her to stores where she could get safe food on a college student’s budget. In time, other students have done the same.
The point is not to just find the five people on campus with celiac disease—though that would be nice, and we’re certainly out there! The point is to talk to the teachers, coaches, and other college employees who live there, and use them to learn. There is safety in numbers, and comfort to be found in a community that knows about your own needs. It can feel weird at first—“Hey, I’ve noticed there’s no Whole Foods. Where do you shop, and are there good options there for someone like me?”—but most of us who get asked don’t think it’s weird at all. We want to be helpful. We like where we live. And we want the people we know to be safe and healthy.
Plan for the Social Aspects
I’m going to go out on a limb and talk about something most people don’t want to acknowledge: college parties. They’re part of the expectations of college life, almost to the point of cliché. They can be equal parts fun and trouble, and the reasons why are common knowledge. But for someone with gluten issues, they can be really tough. Why?
You go to a party, you have a few drinks, your guard lowers, and the next thing you know—you’re eating pizza. Or cookies, and not the gluten-free kind. Or drinking a beer. Self-sabotage can happen at a dry party, too, simply because of the desire to be like everyone else, which can be overwhelming in college. This is especially true in important peer-groups like teams and fraternities. The pressures are real, and it helps to have a plan.
Why? Plenty of people end up smarting after partying too hard, but for someone with celiac disease, it can be far worse. I’ll use myself as an example. I rarely get glutened anymore, but I know that if I do, I can count on losing the next three to four days. At first I’ll be sick, and then I won’t be able to think. Then I’ll be tired, my training runs will be awful, and I’m likely to get sick at the end of it, which will cost me even more time. If that happens when I have a lot going on at work, it will take me weeks to catch up—if I ever do.
If you’re a student with a less-flexible calendar, it’s especially bad news. You have exams, papers, athletic contests, and everything else that goes with academic life. I’ve seen a whole semester turn out to be far less than it could have for students who get sick for only a week.
Back to the college culture of parties and gatherings, then. This is where a wingman—a friend, roommate, or teammate who has your back—can be really helpful. If you take along someone who knows you shouldn’t be eating (or drinking) gluten, you have a kind of firewall. Especially if they’re DD for the evening, why not give them one more job? Packing your own chute—bringing your own food—is another good option, especially if your food is more delicious than what everyone else has. (That boxed gluten-free mac-and-cheese isn’t too bad; I’m just saying.)
I’ve been working around college students long enough to know that college is, among many other things, about taking risks—intellectually, emotionally, and socially. All this is to the good, because taking risks is how we grow as individuals. Though we don’t like to admit it, college is also about failure as much as it’s about celebrating successes: the bad grade that forces you out of a major you thought you were going to follow, the bad strategy of procrastinating on a term paper, and the social experiences that don’t go well all have a way of teaching you important lessons. Taking celiac disease to campus is just one more thing on the list. It’s one more vulnerability, and, try though you might, you’re probably going to get burned at least once.
The part that matters is like anything else in life: you’re not after perfection every day. College is a bridge between the safety of home and the so-called “real world,” and since you’ll be gluten-free in the real world, it makes perfect sense to learn more about that in college, along with studies in everything from biology to Shakespeare.
Paul Graham, an English professor at St. Lawrence University, was diagnosed with celiac disease in 2012. He is the author of In Memory of Bread: A Memoir.