Considering Colleges When Gluten-Free

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Finding the best fit for your diet-restricted college-bound kid.

When Nicolle Robinson thinks about sending her son Ryan, 15, to college, she gets apprehensive. She’s not just concerned about Ryan navigating his way around campus, making the right choices and being truly on his own for the first time. She’s also worried about an allergic reaction that might threaten his life. Ryan, a rising high school junior, is allergic to shellfish, peanuts and tree nuts, although he recently passed a peanut challenge.

“My biggest fear when he goes to college is what we can’t control: the people in the cafeteria who are handling the food but don’t have training; the roommates who eat nuts or use the same microwave and don’t clean it out,” says Robinson, who lives in Leesburg, Virginia. “It’s really a minefield for these kids.”

Robinson’s concern is within reason. Teens and young adults are at the highest risk for a fatal reaction from food allergies.

“Transitioning to college is an extremely challenging time for any student and their parents. But when you add food allergies, celiac disease or a medical need into the mix, it gets really complicated,” says Kristi Grim, national programs manager for Food Allergy Research & Education (FARE). “Everything is new. For the first time in their life, they are away from Mom and Dad and they have to manage everything by themselves. They’re in a new environment. They may have to deal with a roommate. Their support system from high school might not be there. They’re making new friends. They’re eating out every single day for every single meal, instead of eating at home.”

college students

© Shutterstock/Tyler Olson

Before Choosing a College:

Prepare kids for independence long before they get to college. In middle school, let children order for themselves at restaurants. Train children to advocate for themselves, check ingredient lists and never take chances. “The goal is by the time they’re entering college, they are confident enough to say to a dining person, ‘This is what I need,’” says Grim.

Evaluate personality and priorities. A shy student who doesn’t want to ask questions might do better in a school that has a dedicated allergy-free station or an online ordering system. “It’s just about figuring out who you are and what will work best for you,” Grim says. “Are you shy? Are you outgoing? Do you need variety?”

Take a tour. When touring schools, call the dining general manager ahead of time and ask if you can meet the chef and the cooks and take a peek at the back of the house, Winthrop says. Tour the dining facilities during normal operating hours to see how food service is handled.

Ask about dining facilities. Does the college have a dedicated, gluten-free, allergy-free serving area? Can the chef make individualized meals for students with allergies, given advance notice? Is there a registered dietitian on the dining staff? How often is the dining staff trained in allergy-safe food prep?

Ask about cross-contamination. What steps are taken during food prep to ensure that there’s no cross-contact? Is there a dedicated gluten-free toaster and other equipment? Can you get vegetables from the backup pan served with a clean spoon? “Published ingredient lists are helpful and necessary but they can also give students a false sense of security that they know exactly what’s in the food,” Robinson says. “Who’s preparing the food? Have they been trained on common allergens and sanitized their work surface after cooking with them?”

Look out for “weasel words,” Winthrop says. If food is marked as “gluten friendly” or “gluten sensitive,” the facility might not have safe food practices in place.

Assess resident life. Are the resident advisors trained on allergies and epinephrine use? Can you get a roommate who also has celiac disease or food allergies? Can the staff help you negotiate a roommate agreement for a nut-free room?

Get medical information. What medical care is available on campus? Will you be able to get an epinephrine refill? Does the university have an allergy clinic?

Once Accepted:

Contact disability services. “The sooner you start, the more likely it is that your accommodations will be in place before you arrive on the campus,” Grim says. Contact the disability services office, which handles accommodations and documentation. Roommate needs might be handled by either disability services or housing.

Be clear about your medical need. Set up a meeting with the food manager, chefs and wait staff and explain the severity of your allergies. Some dining workers are confused by gluten-free requests, Winthrop says, because some students are gluten-free by choice and are not as careful. “It’s important to do some scripting with yourself ahead of time if you have celiac disease,” she says. “You want to make sure your needs are known. Many staff members have been told, ‘You don’t need to take those precautions for me.’ Sometimes it’s not that staff members don’t care, it’s just that they’ve received that kind of miscommunication from other students.”

college student

© Shutterstock/Michael Jung

List desired accommodations. Do you need a private room? Your own refrigerator? Access to a kitchen in the dorm? Would you like to live near the nut-free dining hall? Realize, though, that you may need to compromise on some items.

Do the paper work. Ask: How do I request accommodations? What forms do I need to fill out? What are the deadlines?

Communicate. If you need a modified menu item, communicate with the chef ahead of time and give a “heads up” text or call 20 minutes before you come in. If you’ve preordered a safe meal and your plans change, let the chef know.

Always carry epinephrine. Most colleges do not have stock epinephrine on hand. “Students are notorious for forgetting to carry their epinephrine with them. That obviously would be critically important,” Grim says. Robinson adds: “I tell my son to carry his epinephrine everywhere. When you are halfway to the dining hall, and you realize you left your EpiPen in your room, please don’t risk your life for convenience; carry your epinephrine!”

Become involved. “It’s good for students to look for ways to become involved. Take part in student government or the dining council or become a resident advisor,” Winthrop says. Also, join a food allergy support group or a gluten-free meet-up.

Different Approaches

While information about a college’s academic programs is readily available, it’s harder to figure out how a school handles food allergies and celiac disease.

This past spring, FARE launched its Food Allergy College Search tool to help families find detailed information on how colleges handle food allergies and gluten-free diets. The database, which initially launched with 40 schools, has drill-down information on allergy-safe options, cross-contact procedures, staff training and roommate accommodations.

Colleges have a variety of approaches, says Beth Winthrop, MS, RD, senior manager, health & wellness architect at Sodexo, a large college dining contractor. Colleges might have a dedicated gluten-free, allergy-free station; students might need to ask for food to be specially handled at a made-to-order station; students might be able to pre-order safe meals online or there might be a restricted-access gluten-free pantry that stocks gluten-free basics. Ingredient lists might be posted in the dining hall, available on an app or only available upon request.

Options are expanding. Last year, Kent State University and Cornell University launched gluten-free dining halls—the first in the country.

The 2012 Lesley University settlement showed that students with celiac disease and food allergies have the right to eat safely in campus dining halls under the Americans with Disabilities Act. However, accommodations are made on a case-by-case basis; there is no rule that every school has to have a dedicated allergy-friendly station, Grim says.

“In college, you have to ask specifically for what you need. The impetus is on the student to ask for the accommodations, not on the university to proactively figure out what accommodations they need,” Grim says. “The student should disclose their disability to the disability services office in advance.”

Grim also recommends that students contact the housing and dining department. However, she cautions, be prepared to negotiate; you might not get everything that you ask for.

“It’s important to get started early,” she says. “Ideally, before you ever set foot on campus for your orientation, you will have things set in place so you know what you’re doing and that you’re safe.”

All that information factors into a family’s college choice.

“There’s so much to consider when choosing a college, so the food allergy issue will not be the only factor we consider,” Robinson says. “However, we‘ll look for colleges with food handlers, medical personnel and dorm directors who understand the risks, are trained to recognize the symptoms of anaphylactic shock and have access to and are trained on using epinephrine. We’ll look for separate dining facilities that don’t serve common allergens and food handlers who are trained on allergens and how to minimize risk. We’ll look for colleges that show flexibility with roommate assignments, so Ryan can room with other food allergy students or students willing to live with someone with food allergies,” she says. “We’ve taught Ryan to be proactive and to be prepared. With this—and support from the college and his peers—he’ll be set up for both safety and success.”

Associate editor Eve Becker is a health writer. Her daughter has celiac disease.

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