The first year away at college is usually filled with a whirl of emotions. Students are excited for this new part of their lives to begin — to get out from under their parents’ watch, take a chance, live on their own, and make the most of their own decisions.

And college is a whole new world.  The classes can be more challenging and parents aren’t there looking over a student’s shoulder. Plus there’s the excitement and worry about making new friends and fitting in, not to mention simply not getting lost on campus that first week or two.

When a student also needs a gluten-free diet, the transition presents even more challenges.

Physicians at Stanford University’s Lucile Packard Children’s Hospital have been taking note of these challenges and the way students on campus handle them. And the consensus is that first-year Stanford students don’t always stick to the gluten-free diet.

“We had some Stanford students not doing as well as they got away from the care of mom,” says K.T. Park, M.D., the hospital’s attending physician for pediatric gastroenterology. He says students become more “flexible” with their gluten-free diet than they should be.

“It is natural for them to explore … and try to have as similar an experience as possible to their dorm-mates, but they have to be gluten free,” Park says, noting that students have to realize the diet is “just as important as medication for someone with a chronic disease.”

Park and other researchers started surveying about two dozen first-year gluten-free Stanford students this past fall to find out how they adapted to school and their gluten-free lifestyle during their first semester. The students will have filled out three surveys by early 2013 regarding quality of life, availability of gluten-free food, compliance with the diet, and digestive health.

The researchers hope to use the survey results to create health policy models for students with chronic diseases.

Meanwhile, Gluten-Free Living talked to a few students to find out what the college experience is really like when you are gluten free.

 

Freshman year

None of the students we interviewed put gluten-free food at the top of their list in the search for a college or university. They all looked for a complete package of academic and social features, with the gluten-free diet added in.

Paul Roy, 18, a freshman at the University of Minnesota, in Minneapolis, was diagnosed with celiac disease six years ago. He says accommodating the gluten-free diet wasn’t his first priority when choosing a school, but the one he attends is accommodating his needs.

“When the chefs cook [my food] they have a designated section and tools just for gluten-free foods,” Roy says.  One concern is consistency between regular cafeteria staff and student workers. “Student workers aren’t up to par on gluten-free foods….so sometimes I am stuck with eating a hamburger with no bun and some soggy corn.”

Sam Lohse, a 20-year-old junior at Concordia College in Moorhead, Minn., has celiac disease, but gluten-free food was not a primary factor when she chose which school to attend.

When she was searching for colleges, she says she looked at the overall picture of the school instead of focusing on the gluten-free diet.  She and her parents met with the managers of the dining hallsafter she narrowed her choices to a few finalists.

Lohse says Concordia has been a good fit, meeting her educational needs while giving her several options to eat gluten free. “The first few weeks at Concordia were a little rough,” she says. “I remember not having a lot of variety.” Since then her options have been increasing.  The dining service has a gluten-free toaster, microwave and refrigerator for her gluten-free food.

Like Lohse, Andrea Wilhite, a 20-year-old junior at Mount Mercy University in Cedar Rapids, Iowa, did not give the gluten-free diet first priority in choosing a school. But she says she now wishes she had focused more on that aspect of her college life.

Wilhite was diagnosed with celiac disease and started following the gluten-free diet when she was 17, not long before she went to college. She describes her first few weeks at Mount Mercy as “very hard.”  “Transitioning into a new school and environment is hard enough, and adding a gluten-free diet on top of that can be very challenging,” Wilhite says.

She figured out which foods in the dining hall were gluten free by reading ingredient lists in a binder that detailed all the foods served. The school makes some foods gluten-free for Wilhite and recently purchased gluten-free buns and tortillas.

Her options have expanded, but perhaps not quite enough. “There are days when I know the cafeteria will hardly have any options for me, and I’d much rather just eat in my room or go out to eat and get something I know is gluten free,” she explains.

 

Universities making the grade

Gluten-free options have only recently been getting more priority in higher education as demand increases. The Wall Street Journal published a survey of 1,500 students done by food-service giant Aramark that showed 4 percent of students had a gluten intolerance and another 5 percent said they were gluten-free for other reasons.

Heather Stueven, residential dining supervisor at Concordia, admits choices used to be very limited.  But about two years ago she started seeing an increase in the number of students with celiac disease and in requests for gluten-free diets. As a result, she has been able to order more foods, including bread, bagels, brownies, pancakes, cereal and pasta.

Many other schools, including Pennsylvania State University, Boston University, University of Chicago, University of South Florida-Tampa, Southern Methodist University and Drexel University, have expanded gluten-free choices for students.

 

Maturing in the gluten-free lifestyle

Both Lohse and Wilhite have matured in their gluten-free lifestyle while in college.  Lohse has become more independent. “Before college, my mom always automatically checked everything for me, checked ahead if we were going somewhere … so becoming my own advocate was the biggest learning experience,” she says.

Wilhite says she started to recognize and deal with “emotional issues” over her difficulty eating gluten free at her school and turned to the Celiac Group of Eastern Iowa for help. “It really helps to be able to be around people who understand your frustrations and situations that you encounter when following a gluten-free diet,” Wilhite says.

Though still a freshman, Roy has been proactive about his diet right from the start of the first semester. He became a university dining adviser for a  gluten-free organization on campus and his residence hall so he can make sure cafeteria staff is educated and handles gluten-free diets correctly.

All three students recommend doing significant research before choosing your school. Wilhite suggests giving equal weight to your educational and dietary needs. And Lohse recommends being a little more flexible and not ruling out any school until you visit the dining hall and talk to the staff.

The challenges of going to college are part of growing up. But in order to meet them, students with celiac disease or gluten intolerance need to be able to follow a healthy gluten-free diet. The transition is much tougher if you don’t feel well, have enough energy or the ability to concentrate. Finding a school that works with you to meet your dietary needs will make the transition much easier.

Finding a college that’s gluten-free friendly

•  Check each school’s residential life or dining hall web page to find out how special dietary needs are handled.

•  Visit glutenfreetravelsite.com for reviews of colleges by students. The site also includes colleges and universities that have gone through the National Foundation for Celiac Awareness GREAT Kitchens Program, which provides a course for chefs and food service managers on safe gluten-free food handling and preparation. You’ll also find links to some campus dining web pages.

•  Get in touch with the school’s nutritionist or head of dining services and ask directly about gluten-free options. You can often do this by phone or email before visiting a campus. See if you can set up a meeting when you visit.

•   Go to the dining hall when you visit a campus. You’ll be able to see how accessible and well-maintained any areas set aside for gluten-free students really are.

•  If possible, eat in the dining hall on your visit. You will get a first-hand look at what it’s like to get a gluten-free meal. If you have talked to the school nutritionist or head of dining services, you will know if there is a specific dining hall that is designated for gluten-free students.

•  See if there is a gluten-free student group on campus and get in touch with members to ask about the reality of eating gluten-free on campus.

•  Find out if you will be required to pay the full fee for on-campus dining or if there may be other options depending on how well the school can meet your needs.

 

What to take

Gluten-free students who have already been through the experience of going away to college and living in the dorms say it will be much easier if you have the following items:

1. A microwave and mini refrigerator

Some schools require you to rent a combined micro-fridge, so check before you purchase either of these items. Others will let you bring your own. If so, buy a refrigerator with the largest freezer compartment you can find. In some cases these appliances are not allowed in dorm rooms and you may have to use the ones in a student lounge, not an ideal arrangement. Make sure you know in advance what the rules are. Toasters and hot plates are usually not allowed in dorm rooms, but check to see if special accommodations can be made. Many gluten-free students bring a toaster, which they use discretely and safely, but it can be a violation of dorm rules.

2. Plate, bowl and utensils

Like any college student, if you are going to prepare food in your room, you will need these basics. Disposables may be a good idea if it’s difficult to clean these items, for example, if you don’t have a sink in your room.

3. Gluten-free staples

Bring non-perishable items including cereal, energy bars, crackers, peanut butter and snacks. If you have access to a microwave, bring things like gluten-free instant oatmeal, soup, popcorn and ready-to-heat entrees.

If you have refrigerator, bring frozen gluten-free bread, rolls, bagels, waffles, pizza, chicken tenders and pasta dishes like lasagna and macaroni and cheese. (Now you know why the bigger freezer is important.) Start the year with fresh fruit and vegetables like mini carrots in an amount you can eat before it spoils, then replenish from the dining hall or a local grocery.

All these will come in handy when the dining hall options are getting repetitive or you want to grab something quickly in your room.

 

 

Amy Leger is the mother of a gluten-free teenager.  She writes regularly for Gluten-Free Living about family issues. She also blogs at www.thesavvyceliac.com. Amy lives in Minnesota with her husband and two daughters.