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Managing College With Celiac Disease

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We have many young people inquire as to how to cope with Celiac Disease while in College. This is a good article, published in the National Federation of Celiac Awareness Newsletter"

Celiacs and College: Tips for Parents and Prospective Students

By Rebecca Panzer, RD, LD

College is an exciting time! It’s a chance to assert your independence and show the world who’s boss. However, it’s a pseudo-state of independence. You’re on your own in respect to your schedule but, often, meals and housing are 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).

As a dietitian, I frequently have celiac patients enter my office seeking advice on the gluten-free (gluten-free) diet. So, when I was approached with an idea for a research project about celiac disease (celiac disease) on college campuses, I jumped at the opportunity. As part of my master’s degree in Health Communication at Emerson College, I created the study with educational guidance from Dr. Daniel Leffler and other celiac disease experts at Beth Israel Deaconess Center and Children’s Hospital in Boston, Massachusetts.

In the past few months, I’ve heard from young adults around the country who shared their experiences and words of wisdom. While the research is ongoing, I’ve summarized some of the preliminary feedback to help those preparing for college ask the right questions and be ready for the college admissions process.

celiac disease and the gluten-free diet do not define me. Most respondents advise that if you have a certain school you’re dying to attend, don’t let celiac disease stop you. As one young lady from California said, “…you can make the gluten-free diet work anywhere. Just because you have celiac disease doesn’t mean your education should suffer. It might take a bit more work if the school can’t accommodate you, but if you plan ahead and make a few sacrifices, it’s definitely possible…but be realistic about how much time, work, and money you want to put in.”

Many who responded did not factor in dining services when applying to colleges. However, when acceptance letters rolled in, some used the school’s ability to accommodate the gluten-free diet to narrow their decision. In the end, students overall advise that academics should come first.

College tours. 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.

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, “Which foods are gluten-free?” If they can’t answer you, that’s a sign you’ll need to be your own advocate in numerous ways.

Every college student I talked to expressed the need to regularly communicate your needs to the staff. No employee at the college is intentionally trying to make you sick. Rather, they may need a little help understanding the gluten-free diet, especially cross contamination.

Campus dining. Most people make the mistake of only talking 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 how things should be done but, when it comes down to it, it’s the individuals on the front lines who will be your greatest day-to-day allies. Questions you need to ask all dining staff include:

• How was it prepared? As one student from Pennsylvania said, “Just because the food Mom made was ok to eat, doesn’t mean dining services prepares it the same way.” He quickly discovered that even vegetables need to be 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 “gluten-free eggs” were being cooked after a batch of pancakes. Be sure to double-check everything because you never know how it was prepared.

• Have you changed your gloves? 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? Don’t hesitate to ask them to accommodate you.

• What are the ingredients? You should check if the school labels the food it serves. 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?”

• How will they accommodate you? Students expressed a desire by the food staff to accommodate the gluten-free 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 gluten-free 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 celiac or food allergy students 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.

Administration. Having a discussion with the administration can be very helpful in numerous ways when it comes to celiac disease. Students and professionals advise a few things to consider in these discussions:

•Registering with disability services. Some students advise incoming freshman with celiac disease to register with disability services since it’s covered by Section 504 of the Rehabilitation Act of 1973. However, since the Act is not limited to celiac disease, 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. It’s a worthwhile conversation to explore with administration at prospective colleges.

•Is the meal plan “required?” Or, can I get an abbreviated plan? This is a crucial question when exploring colleges. Some institutions claim to be able to accommodate the gluten-free diet, but fail to understand cross contamination. Sometimes there is a limited variety of gluten-free foods on a day-to-day basis. Be sure to fully understand your meal plan options. Otherwise you may have to pay for a meal plan and still do grocery shopping to have enough food.

•Allowable appliances. Don’t assume you can bring a full kitchen with you. Check with the school about which tools you can bring and which you’ll have to share with other students. Celiac students swear by the micro-fridge but it was hit or miss if toasters, Forman grills and rice makers were allowed.

Be consistent. 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. As several student expressed, “If you intentionally slip and eat bread one day, your friends will be more likely to pressure you later to stray from the diet saying, “Well you ate it yesterday and you’re still here. What does it matter?’” 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 gluten-free 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.

While it may seem that navigating college with celiac disease is a mind-boggling challenge, every student I spoke with was extremely happy regardless of how many tough times they encountered starting out. They all admitted it becomes second nature in a matter of months and within weeks the staff knew them by name (in a good way). So put in the effort early and don’t be afraid to befriend the administration. They’re only there to help. I wish each and every one of you the very best of luck!!

If you have any other questions or are interested in participating in this study, don’t hesitate to contact me at: rbka.panzer@gmail.com.

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