Off to College with Allergies, Celiac

in Managing Allergies, Parenting & School
Published: August 6, 2014
Housing, Toni VossMeal time is often an important social aspect of college.

In his first year, everything had been working out so well: for five months he had been reaction-free. He had registered with the disabilities office, he’d been placed in a single dorm room to avoid any cross-contamination with others’ food, the dining staff all knew about his allergy, and peanuts had even been removed from the dining hall menu items (except for peanut butter, which was kept in a separate area).

Then this past January, he piled some carrots and pasta on his plate and sat down to eat – and wound up in the emergency room, covered in hives and struggling to breathe. “To this day, we don’t know what food was actually cross-contaminated,” says Chelini. The better news is the university was as determined as the allergic student to remedy the situation: somewhere, there had to be a gap. So now he meets once a semester with the head of dining services, the head chef, and the disabilities office to recap what’s happened the past semester. “With a little bit of time and effort we made it work,” says Chelini, whose courses include finance, law and public policy.

When it comes to gluten-free campus life, Allergic Living could find ample evidence of expanding menu choices. But these aren’t available at every college, and a high level of dis- satisfaction was evident among almost 1,000 students who self-identified as either having celiac disease or gluten sensitivity in a survey that the National Foundation for Celiac Awareness conducted earlier this year.

Sixty-one percent said their dining director had insufficient knowledge of the gluten-free diet, and an equal number said they were uncomfortable eating in their dining hall. Probably not helping the unease was the fact that 42 percent of the study participants had only been diagnosed since starting college and were on a learning curve themselves.

“Students must place a huge amount of trust in the dining services team, and that can be difficult when you’re not sure what’s going on in the kitchen,” says Beckee Moreland, NFCA’s director of gluten-free industry initiatives. The flip side of this study is that 40 percent were finding their university dining hall sufficiently accommodating – which indicates progress, if slowly, in the right direction.

“Things are getting better, but there’s work to be done,” says Moreland, who heads up NFCA’s gluten-free food services programs, including the comprehensive online training protocol for university personnel. She observes that a communication breakdown occurs when celiac or allergic students don’t want to “make a fuss”. Yet until they do, accommodations aren’t likely to improve.

Evidence of the power of a few to effect change is shown in a settlement between a small group of celiac students and Lesley University in Massachusetts. The students filed a complaint under the Americans with Disabilities Act (ADA) because the university’s mandatory meal plan did not provide gluten-free options – a medical necessity for them. The Department of Justice pursued the complaint, resulting in a settlement in late 2012 that required the university to make some serious changes to its dining system, including offering gluten-free and allergy-free meals at its dining halls, having signage to identify foods with allergens or gluten, staff training on allergy precautions and allowing students with such issues to pre-order safe meals.

While settlements are only legally binding among the parties involved, this has big implications, according to Wisconsin attorney Tess O’Brien-Heinzen, an expert on disability law, including the ADA and Section 504 plans. Given the Department of Justice’s position on this settlement, and the wording of the 2008 ADA Amendments Act, she sees a changing legal landscape. “There’s no question now in my mind, that food allergies are a disability under the law.”

At least one student has employed the Lesley U. settlement to influence her university and win improved accommodations. “I’ve been able to use it a lot, to get stuff happening,” says Dhanalakshmi Thiyagarajan, who has a wheat allergy.

When she first arrived on campus at the University of Pittsburgh, the Lesley settlement hadn’t yet occurred, and eating safely was onerous.

ThiyagarajanDhanalakshmi Thiyagarajan: formed a gluten-free club.

“The first semester was horrible, I was losing weight all the time,” she says, also noting how she hated missing out on eating with her friends. There was only one place on campus which offered wheat-free food, but Thiyagarajan would react when eating there because of poor procedures to avoid cross-contamination. She managed to survive the first year by befriending the manager of a convenience store in her residence, who would purchase products for the student.

Her frustration at a boiling point, Thiyagarajan decided to form a gluten-free club on campus, which has become a big success. She is now working with gluten-free manufacturer Udi’s to bring in more options and to train the food services staff, and also with NFCA as a resource for food managers. For the fall semester, she is expecting several gluten-free options in each dining hall.

There clearly are discrepancies among the universities as to the degree of food accommodations offered. This is why Allergic Living highly recommends finding out in advance about accommodations at a few universities, in the same way that students thoroughly consider their course selections. Become aware of your student’s ADA rights and the university’s responsibilities, and also consider that the student may find campus life a lot more enjoyable at an institution that’s already got the welcome mat out for allergic or celiac freshmen.

See also: Know Your Food Allergy Rights

You’ll sense that in the staff’s attitude: do they recoil and instantly speak of what they “can’t guarantee” in terms of food, or like Kathy Egan at Holy Cross, are they solution seekers? “You have to have the right attitude of ‘I’m going to serve this student, how can I figure this out?’” she says. “If we go into it with an open mind and creative solutions, we’ll figure out a way to do it.” Her college gives allergic students the option to request safe meals via e-mail. As long as the e-mail is sent by midnight, their meal will be ready for them the next day.

The customized meals that David Parkinson in Delaware and Elizabeth Ogden in Massachusetts were getting aren’t widespread, but they are out there. Much depends on the approach of the dining supervisor.

The affable Chef Murray at Eastern Michigan clearly takes pride in being able to accommodate. He’ll provide “hand-delivered custom meals” and even cook from custom recipes upon request. “I’m at the market twice a week,” he says. “You tell me what cereal you like, and that’s the cereal we’ll carry. If your mom makes the best bread pudding in the world, we’ll make you gluten-free bread pudding.” At the University of Kansas, dining services director Nona Golledge echoes this approach: “We have the flexibility to adjust our menus and options, so it’s easy for us to visit with our students and tailor our services to their particular needs.”

But no matter how flexible an institution may be, if a student isn’t proactive about communicating his or her needs, it’s impossible to work out a custom solution. One thing Allergic Living consistently heard from college staff was that very few students with food allergies actually ask for assistance. Whether they’re shy, not wanting to cause a fuss, guessing about allergen avoidance or just unused to asking, it’s imperative that they learn to speak up. Otherwise, they are taking a big health risk.

“The students have to seek us out, we don’t chase them down,” says Egan of Holy Cross. That’s fair enough; this isn’t high school. The obligations to accommodate don’t kick in until a student comes forward, provides proof (usually including a doctor’s note) of the disability, and asks for accommodation. “Then a university or college has to start the process,” says O’Brien-Heinzen.

While the legal landscape is changing, and many colleges are already providing excellent accommodations, there is still work to be done. That’s why it is now more important than ever for college students with food allergies or celiac disease to communicate, provide documentation, ask for and encourage campuses to get on-board with accommodations. As people learn their rights, and learn to speak up to assert those rights, the situation will continue to improve not just at colleges, but elsewhere in society as well.

See also:
• College To-Do List
U.S. Colleges Directory: Comparing Food Allergy & Gluten-Free Policies
• College Food Allergy Rights