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Below is my reply (please see my previous email for details!):
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Theresa,

I'm more than happy to assist you in your article.  I'm glad to see that this issue is being brought to the attention of University authorities, as the prevalence of college-aged students with Celiac will undoubtedly increase as more cases are diagnosed.   To clarify, current research estimates Celiac prevalence at 1 in 100, while in reality, only about 1 in 1000 cases are properly diagnosed.  The other unfortunate souls are probably mis-diagnosed with a condition like Irritable Bowel Syndrome or Crohn's Disease.

In any case, I'm now in graduate school and living in an apartment.  However, I well remember the struggles that I went through during my undergraduate years to live a normal and healthy life.  First of all, I want to stress that living off-campus as a freshman is NOT a "huge convenience," at least in the social sense.   Despite the common stresses of dorm life, I believe that a huge part of the college experience is to bond with other students.  A great many friendships are borne of dorm living, and it would be extremely isolating to live off-campus while the other students are forming friendships and relationships within the dorm setting.

With this in mind, I endeavored to live on-campus as a freshman.  I wanted to have as normal of an experience as possible.  I would also like to say that, as a lifelong Celiac, the worst part of the condition is not the dietary restrictions.   Rather, it is, in my opinion, the social awkwardness that results.  If you think about it, most of our social gatherings--Christmas parties, work meetings, dinner gatherings, etc.--revolve around food.  When one has to either decline the invitation, avoid the foods, or bring his/her own meal, it creates a certain isolation in and of itself.   That, and many people will simply assume that you are "picky" or have some sort of eating disorder.

Anyway, I actually factored my dietary requirements into my college decision.  I chose to attend a relatively small, upscale liberal arts school--Butler University--located within a few hours of my hometown.  As soon as I was admitted and made my final decision, I started to work with the Disabilities Coordinator, as well as the food service director and chef, to plan the best eating situation for my freshman year.   My parents were helping with every step of this process, which later proved to be invaluable.

Our plan was thus: I would live in the freshman girls' dorm and be allowed to have a refrigerator that was slightly larger than the standard dorm size, as well as a toaster oven.  I was also allowed to store gluten-free food items in the food service freezer.   I was allowed walk-in access to this freezer whenever the cafeteria staff was working.  In terms of meals, I met with the chef and food service director once a week to go over the menu, and see what my options were within the context of the planned meal regimen.   If no clear gluten-free alterations were available, the chef and I would discuss meals that he could have his staff make separately upon my arrival to the cafeteria.

So, everything seemed to be very amiable and organized, and I anticipated a good living experience.  The University was certainly working hard to be in compliance with ADA recommendations.  Unfortunately, the reality was not nearly as sunny.   I quickly learned that the chef wasn't always present in the cafeteria.  And despite his instructions, his staff was often clueless as to my meal requirements.  Additionally, the food service was constantly switching suppliers for their bulk food products, so ingredient listings were sketchy and often unavailable.   Finally, about mid-semester, the university switched food services altogether (whether for financial or political reasons I'm not certain).  At that point, I had to start over and re-explain my situation to the new director and chef.

Everything deteriorated from that point, despite the insistence of myself, my family, and the Disabilities Coordinator that a better system was necessary.  By the end of my first semester I started to feel fairly ill.  I tried to make my own meals whenever possible, but often did not have the time or necessary supplies.   Eventually, near the end of my freshman year, I was so sick from small amounts of contamination that I actually had scurvy from my lack of vitamin absorption.  And although I was able to stay in school and maintain my grades, I was certainly not as happy or successful as my peers.

Sophomore year I joined an on-campus co-op that enabled me to cook ALL of my own meals using my own food, utensils, and supplies.  I lived in the co-op for sophomore and junior year, and then moved to an off-campus apartment with a trusted friend for my senior year.

Based on my experience as well as the experience of other Celiacs at colleges and universities, I believe that it is extremely difficult to accommodate a Celiac's diet within the dorms.  There is simply too much cross-contamination possible in the kitchen setting, and cafeteria staff are not educated enough about food preparation or ingredients to avoid all of the common gluten "pitfalls."   Lets face it, most of them are barely literate!

When I began college, I had been a Celiac for 14 years.  I was extremely careful about my diet.  My parents were also leading educators for parents of Celiac children.  Therefore, I feel that we were fairly good candidates to "test-drive" the Celiac dorm experiment.   Furthermore, Butler was a small, very attentive university--probably much more so than most larger, state schools.  All in all, I contend that ours was set to be a good experience.  The practical reality was that it simply wasn't feasible.

I had many good times in the dorms and made some incredible friends.  I would feel very sad if someone had to miss out on those experiences due to Celiac.  A Celiac teenager's life is hard enough!  However, the most important part of college is to get your education, and that is impossible if you are constantly ill.   Therefore, I feel that the university should do whatever the student requires to accommodate his/her disability.  If that is having the student cook his or her own meals in the cafeteria kitchen, that might work.  If it is living off-campus, then that should be allowed.   Also, he/she should be able to have a car on-campus so that they can purchase required gluten-free food items.

I got the sense from reading your message that you feel that the off-campus living situation would be a luxury for a college freshman.  In general, I would have to argue otherwise.  Rather, it would be an isolating factor that might limit the person's college experience.   However, if the student has researched that situation in the dorms and found that there are no viable options, then I firmly believe that it should be allowed.  Celiacs are, in all reality, generally better educated about their needs than most physicians.   Trust that person to know what is best for their own health.

I hope that this helps you with your article.  Please feel free to email me with other questions!

Best wishes,
Jessica

J.L. Mahood
Research Assistant
Howard Hughes Teaching Fellow
Department of Medical Microbiology and Immunology
University of Wisconsin-Madison

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