Navigating the Gluten Free Diet in College
By Rebecca Panzer, MA, RD, LD
In educational collaboration with the Celiac Center at Beth Israel Deaconess Medical Center First Steps
College is an exciting time-it’s a chance to assert your independence and show the world who’s boss. However, while you’re independent in many ways, meals and housing are usually governed by the college. This can be a challenge but with a little preparation and foresight, it’s a piece of cake (gluten free of course!)
This guide was created based on the insight provided by young adults living with celiac disease across the United States. It has three sections. “First Steps” outlines people to talk to before attending college. “Living on and off Campus” discusses the logistics of living and eating in tight quarters with other people. Finally “New Friends” outlines some of the social challenges students experience in the college environment. There are two tools. The first is a series of questions to make the dining hall experience a little easier. The second tool is a foldable business card that outlines the gluten free diet for restaurants and friends looking to create a gluten free meal.
Unanimous among college students: If you have a certain school you’re dying to at tend, do not let the gluten free diet stop you!
On the college campus, multiple departments have solutions for people with health considerations. Administrations from campuses around the country highly recommend parents and students call ahead to set up meetings when touring the college.
Checking in with residential life, health services, disability services, and dining services not only help new students on campus, it also strengthens the resolve of the administration to make appropriate changes. One dietitian from a 10,000 person campus informed,
“We now have a system to approach celiac disease. We work with disability services and residential life. This came out when we had a parent whose daughter with celiac disease intensely requested accommodations (we didn’t have a process at the time). We met with the director of disability services, food services, the residential life director and the family to discuss what everyone could do. It was what jump started the program actually…it was the first time we were all able to sit down and talk.”
Residential Life: Residential life is a great place to start. This is the administrative party who has a connection to every aspect of living on campus, including dorm life and dining services. They are also typically tied in close with disability services (though not always). They’re an excellent way to make those first contacts with personnel on campus.
Health Services: The person to get in contact with at health services may be a registered dietitian, registered nurse, or medical doctor. When you call, explain that you’re a prospective student investigating how the campus handles celiac disease (or food allergies since it’s the same treatment). They may point you to another department or they may inform you that you need a letter confirming the diagnosis in order to receive accommodations by the university.
Disability Services: Some administration and students advise incoming freshman with CD to register with disability services since it’s covered by Section 504 of the Rehabilitation Act of 1973 (see
“Question to Ask” for details). However since the act was not designed for celiac disease, so the benefits can be hit or miss. Many students who did were able to get larger rooms or “exceptions” to the normal rules that govern students such as limitations on cooking equipment in the dorms. It’s a worthwhile conversation exploring with administration at prospective colleges.
Dining Services: The individual in dining services who heads the GF diet can be different at every campus. Some have a registered dietitian, food service director, and still utilize the head chef. Ask to speak with the person who handles food allergies on campus. If possible, ask to experience a GF meal when you tour the campus. That way you get a general understanding of what you can expect day to day on campus.
In the end, the department that’s most involved is the dining hall. However every college handles the GF diet differently. For example, some dining halls won’t assist you until you’ve received a letter from health services. Others require a meeting with all the different departments. Some colleges may direct you immediately to dining services, but it’s worth checking in to make everyone in the administration aware. Every administrative person who provided insight recommended it doesn’t hurt to check in with all parties.
New students and parents need to ask questions from the very start. When you visit prospective schools, tour the dining hall that you’ll be using. Keep in mind larger campuses may have multiple dining halls and still others limit which dining facility your meal plan is good at…be sure to ask the tour guide how the system works. It’s also important to remember that on some campuses, only one or two dining halls may accommodate the GF diet…but how close is that dining hall to where you’ll be living? Will you have to walk 20 minutes every morning in order to have breakfast?
Analyzing the dining hall should begin at the tour. Ask the guide how the college accommodates allergies—but don’t stop there. When you’re in the facility ask the staff serving, “What food is GF?” If they can’t answer you, that’s a sign you’ll need to be your own advocate in numerous ways. See worksheet for questions.
While you’re on campus for the tour, ask if you can schedule a GF meal for you and your family. That way you can experience how the dining staff provides for celiac students on campus. Did they cook you a separate meal in the back? Were you limited to the salad bar? Or is there a GF section of the cafeteria?
Also, stop into nearby grocery and convenience stores. While dining services may provide the bulk of your meals, realistically you’ll want snacks and on-the-go meals in your dorm room for off hours. Check out the offerings of local stores as well as how close they are to you. Consider how you’ll get there (Walk? Drive? Public transportation?). If the grocery store has slim pickings, talk with a manager and see if there’s an option to increase offerings.
Most people make the mistake of only connecting with the head chef, dietitian, or dining services manager. While they oversee the operation, the managers are not the ones preparing and serving your food. Managers/head chefs are an excellent resource on ingredients and on things should be done, but when it comes down to it, it’s the front lines who will be your greatest day-to-day ally.
Preparation: As one student from Pennsylvania said, “Just because a dish Mom made was ok to eat, doesn’t mean dining services prepares it the same way.” He quickly discovered that even vegetables need to investigated after he found out the staff steamed them using leftover pasta water. Another student in Connecticut discovered the eggs she had been eating every morning were the culprit for her sickness. She realized the advertised “GF eggs” were being cooked after a batch of pancakes… Be sure to double-check everything because you never know how it was prepared.
Gloves and Serving Utensils: Watch the staff. Do they change gloves between serving the breaded chicken and the grilled? Do they use the same tongs for multiple types of food?
Ingredient Labels: Check if the school labels the food it serves, however look closely. Do they label every ingredient? Allergens? One student from Massachusetts grew frustrated after she realized the dining hall was being inconsistent, “They would label that a food had soy but they never explicitly stated they were using ‘soy sauce’ which has gluten…” Other students expressed the need to look beyond the label. As one young man said, “The ingredient list would say it has BBQ sauce in it…well what’s in the BBQ sauce?”
Accommodations: Students expressed a desire by the food staff to accommodate the GF diet; however the accommodations varied and were not always realistic to the student’s preferred, spontaneous lifestyle. Be sure to ask the manager how they make dining services work for you:
Will they make you a meal in the back? ( NOTE : This may take an extra 20 minutes).
Do you need to supply your own GF food or do they have food on hand?
Do you have to call ahead?
Talk to Other Students: If you want to know how things really work, ask the head chef, dietitian, manager, or head of residential life to put you in touch with other students with celiac disease or food allergies on campus. They can provide you with information about how they live day-to-day on campus and what you can expect as a student.
What’s Up Doc(s)?
Before going away to school, be sure you’re in regular contact with your physician(s)-both primary care physician and gastroenterologist. These professionals can help you navigate some of the administrative necessities of college such as providing documentation that you have celiac disease. But do it early! If you wait until the last minute, you might end up going to college without accommodations in place. Contact them early with your request.
Don’t forget about your dietitian! Dietitians have training in both food service administration and medical nutrition therapy. Meaning they speak the language of celiac disease and dining services. Keep in touch with your dietitian. They can help you tailor questions for dining services and figure out which foods you can eat and which ones to question.
Finally, try as you might, at one time or another, you will most likely experience the side-effects of the ingesting gluten while on the college campus. Make sure to have a plan about where you will go in case you need care. Don’t wait until you’re sick!
If you live very close to your primary care physician from home (ie: within 30 minutes) you’re in good shape. But if you live farther away, consider seeking a physician in the area for emergencies. If you use the college’s health center, you may have to make gentle reminders to the staff about celiac disease (ie: the need for gluten free medications).
Important Note for Parents
New HIPPA laws make it legally impossible for parents to talk to the health center staff without your child’s permission (since your children are over the age of 18). Your children need to make sure all medicines that they are prescribed or that are purchased over the counter are gluten free.
Living On and Off-Campus
Cooking in a cubicle can be a bit of a challenge, but students have found some great tools to help them along the way.
Micro-fridge: This handy appliance is a gift to celiac everywhere. It is a mini-fridge with a built in microwave and a larger than usual freezer. The last component is crucial for those following the GF diet. This allowed students to store GF food in their dorm and avoid multiple trips to the grocery store. Many students kept their micro-fridge after moving into an apartment to allow for them to have a safe place to store their food.
Microwave: Microwaves are the college student’s greatest ally when it comes to meal preparation. Be wary about microwaves that are public use. Often these are cleaned irregularly and are a hot spot for gluten contamination if you’re not careful. If you’re using a microwave that’s for multiple students, wipe it down before diving in. Or put in a request to residential services to have them clean it regularly. Either way, keep your eyes peeled.
Most campuses allow students to have a microwave in their dorm room. Some students opt to have their own personal microwave but most end up sharing with their roommate due to space considerations. If you end up sharing, be sure to discuss issues of cross contamination with your roommate. Similarly to above, no one likes to clean microwaves as often as they should be. To minimize this issue, set a rule that each of you will cover their food with a plate or paper towel to avoid splattering (and to keep residue from falling in your food). Try to clean it as often as you can to avoid any complications.
Pasta and/or Rice Cooker: Some students use a microwave pasta and/or rice cooker. These are available through various stores for about $10-$15. However they’re very similar to cooking these items in a covered, microwaveable bowl. It may take some experimentation to get the texture and consistency of the food just right but don’t be afraid to play with these items to allow you to have more inexpensive food at your disposal 24/7.
Foreman Grill: For some students, items similar to a Foreman Grill were crucial to their college diet. However, most colleges do not approve of these appliances. Be sure to check with your college before you purchase one. If you feel you have to have it in order to prepare your food, ask if you can cook with it in certain areas (ie: common kitchens) or if there’s any way to work around the rule. .
Toaster: While dorm rooms usually do not allow students to have toasters, they are a must for apartment life. Be sure to purchase your own separate toaster and label it GF to avoid having your roommates contaminate it.
Cleaning Supplies: This is a must (unless you plan to do a lot of laundry). Students were unanimous in their recommendation that incoming students with
celiac disease purchase their own clean cleaning supplies such as sponges and towels. Many students told stories of sponges full of flour and un-clean pans being dried with community towels. In order to limit cross-contamination, purchase your own set of cleaning supplies, label them, and keep them separate from your roommate’s.
Plates/Silverware and Pots/Pans: This is another must (unless you’re a dishes fanatic). This is another topic where students unanimously advised incoming students with celiac disease to purchase their own cups, plates, silverware, pots, and pans. Students who didn’t purchase their own said they always washed these items before and after using them which resulted in a lot of extra cleaning. They reported doing this because they saw how their roommates washed dishes and couldn’t trust them to make sure they were GF. Students who purchased their own said they stored them in a separate giant Tupperware tub or had their own cabinet.
Giant Tupperware: Students used giant Tupperware bins to store their food and keep it separate from their roommate’s. That way they didn’t risk crumbs filtering into their gluten free food. Students also used these tubs to store their dining ware (ie: silverware, pots, pans, plates, cups). Think about it—as much as roommates may try, the average silverware drawer has a few crumbs to spare. In order to decrease cross contamination, keep your utensils and plate ware separate.
Food Storage: Students used a variety of methods to store their foods. Some had pantries in their apartment. In this situation they insisted on having the top shelf in order to avoid having crumbs sift down onto their food. Other students used an entirely separate shelving or cupboard space. Still others kept their food in giant, sealed tubs. No matter what your method, be sure to keep your food separate and labeled. In the refrigerator, keep your condiments separate and labeled as GF. Some students made the mistake of not labeling their peanut butter or mayonnaise, only to find bread crumbs from roommates who were double-dipping the knife. Also try to use the top shelf to store any food or drink that isn’t tightly packaged.
Explaining CD and the GF diet doesn’t need to take anymore than a few moments. Here are some helpful “quick and dirty” explanations:
CD is not contagious. It’s similar to a food allergy in that if I eat foods with wheat, rye, oats, or barley my body reacts. But instead of having problems breathing, my gut has problems digesting. A reaction isn’t immediately life threatening. But if I eat it (even a crumb) I could have serious complications.
I follow a GF diet…no, it’s not a weight loss diet. It’s the diet to treat an autoimmune disease (not contagious) called CD. If I eat anything with gluten (which comes from wheat, rye, oats, and barley products) I get really sick. So I avoid foods that have it in the ingredients or have been touching it.
There are a lot of foods that I can eat. I can eat most dairy products, meat, fish, poultry, eggs, vegetables, quinoa, rice, corn, potatoes etc etc. I just have to avoid any food that has touched or is made with wheat, rye, oats, and barley products.
Students reported that in general, their roommates were pretty accommodating for the diet. Roommates seemed to understand that “what’s mine is mine and what’s yours is yours.” However, it’s imperative to impress upon them the importance of following this rule. And that if the rule is broken (intentionally or unintentionally, either by them or friends) that they communicate the accident before you experience contamination. Sometimes roommates think “just a little won’t hurt” so it’s up to you to teach them that even a dusting of flour makes a difference. The more you communicate with them, the easier your life will be.
There are a few topics that need to be discussed with roommates prior to living together:
CD: In a few sentences, give your roommates an overview of CD. Use the elevator speeches below as well as foldable business cards to give them perspective.
GF Diet: Your roommates don’t need to know every detail about what you can and can’t eat. What they do need to understand is that even a crumb of gluten has an effect on your health. So they need to keep their food, cleaning supplies, dishes etc separate from yours. They also need to wipe down surfaces when they’re done cooking/baking to avoid getting a dusting of flour on common goods. It’s also crucial for you to communicate to them that it’s not “ok” to slip up here and there. It isn’t a weight loss diet where cheating is allowed here and there. Cheating, in the case of the GF diet, results in damage to your health.
Food Storage: Ask roommates to keep their food covered or tightly close to avoid it leaking all over the place. Using the top shelf of food storage areas or separate compartments minimizes this risk and also impresses upon them that ideally “what’s mine is mine and what’s yours is yours…” that includes crumbs.
Separate: Remind them not to use your kitchen items. Even if all the others are dirty, it’s important to your health to keep things separate.
Labeling: After defining the GF diet, explain you’ll be labeling all your GF food. This isn’t to remind you but rather to communicate, “Please don’t use this.” Explain how expensive the GF diet can be as well as the risk of contamination. It’s not that you mind sharing. You’re not a germ freak. But the crumb that slips off their knife while they’re buttering their bread will make you feel very sick a few hours later.
Cleaning Supplies: While soap and water kill germs, they don’t kill gluten. Ask to create a system for you to conveniently stow away your sponge and towels. Ask them not to use your towels for anything—including as a make shift hot pad or hand towel.
Cleaning: Acknowledge that you expect to be doing a lot of cleaning while you live with them and that’s “ok”-- they shouldn’t feel bad. It’s just a safeguard for your health. However, it is important to ask them to do their part such as wiping up a spill or cleaning out the microwave.
All this being said, don’t expect your roommates to always put your needs first. Students expressed that while their roommates understood, they didn’t expect them to be perfect or be thinking of the GF diet all the diet. Additionally, your roommates will likely have friends over who aren’t aware of your dietary needs. These friends may make the mistake of cleaning something with the wrong sponge or using your food accidentally. Labeling may decrease this challenge but it’s not a guarantee.
Be reasonable about your expectations from roommates and do your best to keep it top of mind. On the flip side, some students reported that their roommates went above and beyond—almost to the point of being overly concerned. Explain to them, you’ve lived with this diet for a while and you know how to manage it. Additionally (if you were diagnosed before going to school) you most likely navigated these situations with family members who did not have celiac disease. You’ve got it under control—you just want to make sure they’re aware.
Depending on where you go to school, finding a grocery store that has GF food can be an immense challenge. However, that doesn’t mean you’re up a creek without a paddle. Many grocery stores are willing to bring in “special items” if people request them. If they won’t, keep in mind there are many foods that are naturally GF –don’t overlook them in your search for food! As one student said, “I think it’s pretty easy to get caught up on the gluten free cookies, cakes, brownies, crackers, and bread. But I found that once I re-focused on foods like potatoes, rice, vegetables, and fruits I had more food than I realized. Granted I still had my mac n’cheese that I ordered by the case…” This student also brings up an important point: the Internet. Don’t underestimate the power of ordering food online and having it delivered right to your front door!
Don’t forget your new friends at college most likely will have no idea what “gluten” is. It will take some patience and explaining on your part. The students I spoke with highly advise that incoming students be very consistent in what they do and don’t eat. If you want your diet to be taken seriously, it’s crucial that you are your own advocate and that you speak up to insist upon GF foods—with everyone you encounter. It doesn’t need to be the center of your life, but it should play a role in how you live.
Check out local celiac and gluten free support groups on or near campus. They’re a wealth of knowledge— even if you decide not to attend meetings. Just joining the list-serve can tell you
what the hot spots are in town and which ones to avoid.
If you’re looking for other students on campus with celiac disease, consider following the example of one young woman who said, “I posted my email by all the gluten free food on campus. Now we have a little informal support group and go out to eat together once a month.” It’s a great opportunity to meet with other people on campus and talk about your challenges…and solutions. Keep in mind-there’s strength in numbers!
It’s likely that college isn’t the first time you’re “eating out” and managing celiac disease. So this handout won’t explain how to deal with kitchens and menus. Instead, new students are challenged about how to explain to new friends, “I can’t eat here…”
First things first, when you get to college get the lay of the land. What restaurants are in the area? Check them out online. Look at their menus and if necessary call them. Try to find a restaurant within each genre of dining: Asian, Italian, American, sandwich spots, and coffee shops. Also which bars are best for you? Keep a running list of which places that work for you. More likely than not, once you tell your friends about CD and the GF diet, they’re going to ask you first where you can go out to eat. If you have a good understanding of your options you can rattle a few off without missing a beat. Otherwise you risk going, and nibbling on a salad or grilled chicken breast.
Ahhhh drinking. If you’re under the age of 21 you can skip this section (ahem). If you’re 21+ (or 18+ living in Canada) read on…
Drinking seems like a straight forward concept—distilled liquor works, be wary of mixers, beer is out, and hard cider rules. However, certain college rules and policies may put a damper on the simplicity of this routine. For example, as one young woman reported,
“Drinking has been a huge issue for me. I’m in a sorority so we mostly go to fraternities--who only serve beer. Normally I would just bring my own, but they (security) check your bag before you can go in. I tried pre-gaming for a while, but then I would be drunk before we got there. By the time everyone was just starting to have fun, I was ready to go home.”
Eventually she found a fraternity where one of the members had CD as well and he would provide her hard liquor instead of beer.
Other students took to carrying their booze with them went they went out with friends. One woman jokingly explained her solution, “I always have what my friends I refer to as my ‘magic bag.’ I always carry a six-pack of hard cider with me when we go out. That way I can just crack one open with my friends. We always laughed about it and I got teased a bit, but it definitely worked for me.”
Be careful about having parties at your apartment. When you invite a lot of friends over, it’s impossible to keep the beer out of the kitchen where you cook every day. Keep your GF foods/supplies out of the hands of party goers. Otherwise your expensive GF food and “clean” supplies may wander. If you can, enlist your roommates to help put things back in order afterwards. Otherwise, be prepared to scrub…
For some, dating is half the fun of college. Unfortunately, parties and bars are where some romances start in college so you have to remember that a kiss from a boy or girl who’s been drinking is filled with enough gluten to get you sick and affect your villi. So what do you do?
Admittedly, some students said that if they didn’t know their significant other before the first kiss, they didn’t press them about brushing their teeth. As one girl said, “I don’t get sick from eating gluten, so what should I do? Say ‘pause…brush up’?!”
“Most of the people I dated were friends before we ever dated. So I had ample opportunity to explain the GF diet and jokingly push that people need to brush their teeth before they kiss me. It’s definitely a running gag now with my boyfriend and I ‘nuh uh uh! Brush your teeth!’—our friends make fun of us for it all the time. But it’s worth it to me. I work so hard to stay GF that I don’t want even the smallest contamination.”
“My girlfriend and I have made brushing our routine a little more ‘risqué’ than the average couple. So instead of it being a chore it actually, ah ‘sets the tone’”
“I don’t have a steady boyfriend so I carry those mini-toothbrushes you can slip on your finger…I hand it to them and joke, ‘quickie?’ before they move in for a kiss. It works every time. Best part is the fresh breath!”
It’s important to remember that yes, even a kiss can affect your health. While students didn’t report being perfect, it is a matter of consistency. Say you don’t tell them to “clean up” before the first kiss…that sets a precedence that “every once in a while is ok” when in fact it’s not. You work so hard to stay GF…why intentionally slip up?
Tool: Questions to Ask
Always remember dining services are there to serve you. They sincerely want to make the meal plan enjoyable for you and take great pride in being able to help in every way possible. Most dining halls across the country provide their staff with education on food allergies and the importance of avoiding cross contamination. However, while they may be aware of your condition you may not always be in the front of their minds when food is being prepped in the back. However, if you continuously communicate with the staff, they will recognize you when you walk in the door and immediately shift their attention. It’s important that you stay proactive regarding your dietary needs.
Tool: GF Business Card
This foldable business card is intended to provide cooking/meal prep instructions for those unfamiliar with the GF diet. Carry these cards with you when you eat out to hand to dining managers or “personal chefs” to familiarize them with the GF diet and issues in cross contamination.
What is Celiac Disease?
Celiac disease (CD) is a genetic disorder that affects 1 in 133 Americans where the ingestion of gluten (a protein in wheat, rye, oats, and barley) causes an immune reaction. This damages the lining of the small intestine and impairs the digestion of food and absorption of nutrients, often leading to malnutrition, bone disease and other conditions throughout the body. The only treatment is a 100% gluten-free (GF) diet.
For more information about celiac disease and the gluten-free diet, please visit:
Ingredients to Avoid: It’s very important to read the ingredient label of the product you’re using. You must avoid
Wheat (Einkorn, Durum, Faro, Graham, Kamut, Semolina, Spelt), Rye, Barley and Triticale, and Oats
Examples of gluten may include:
Ingredients to Choose:
Any food/ingredient that does not contain wheat, rye, oats, or barley or any of their derivatives is typically safe.
It’s very important to keep gluten containing foods separate from GF foods. A few crumbs of food with gluten in it can make a person with celiac disease very sick. Here are a few tips: