The second installment in a series about gluten-free struggles on campus.
By Wendy Gregory Kaho of Celiacs in the House
[Editor's Note: Going to college can be one of the biggest challenges an individual with celiac disease or gluten sensitivity will face. We asked our blogger friend Wendy to share her experience in sending two gluten-free kids to college this year. This series of articles includes candid accounts of each battle and concludes with lessons learned to help you avoid similar struggles. To learn about NFCA's gluten-free training program for colleges, visit GREAT Schools.]
A Little Background
Our son was home schooled from kindergarten through 12th grade. He took 2 years to study art on his own before choosing a small, great books-inspired college 7 hours away from home. He was the child born to draw. He was burning up paper and crayons as fast as I could buy them as soon as he could hold a crayon or pencil in his hand. He wanted to be a book illustrator, but he too wanted a liberal arts education before doing more art study. He was the bookish lover of history and philosophy and literature that took long hikes with a camera and a sketch notebook. He was the easy-going, make no waves, distracted, absent-minded professor type who disappeared for hours with big, thick books. His only school choice had a freshman class of 150 students and a dining hall management company that was winning awards for its use of local, fresh and often organic ingredients, as well as recognition for its gluten-free efforts. On observing the incoming class as they assembled on the stage for the convocation ceremony, I saw that 2/3 of the class looked to be the same kind of kid who had more book smarts than street smarts and assumed the school was used to the kind of attention they might need.
We had a face-to-face meeting with both the new chef and the new dining hall manager. Sitting across from us in their chef whites, they assured us that they knew how to do gluten-free meals and that a station would be set up with gluten-free breads, waffles, cereals and desserts. The dining hall manager took us into his office inside the bustling kitchen that was filled with fresh produce. He showed us a Whole Foods bag filled with gluten-free items, including pastas. The food was beautiful in the light-filled historic building that served as the dining hall. The staff seemed to know the answers to our questions or immediately looked for someone who knew. We felt comfortable with the situation; we thought all was well. After alerting the school nurse to our son’s issues and telling everyone that he did not have the typical GI symptoms and might not know if he was getting gluten in his food, we were assured that college staff members would keep a close eye on him and we confidently left our son in their care.
About a month into the semester he started calling saying he was tired and needing a nap twice a day. At first we put it down to the late nights of partying his dorm mates were doing on Wednesday, Friday and Saturday nights. We didn’t expect the drinking and partying to be such a big part of this non-traditional, very intellectual program. The parents at the visitations were worried that most of the student population was smoking, but alcohol use did not appear to be a big issue. So we thought lack of sleep was the issue. But more calls and a decided lack of energy and depression in his voice had our concern. We thought again it was disappointment in the school and a feeling that the $50,000 a year price tag was not buying the rigorous education promised. After much thought, he said he was not going to stay at the school after he finished his semester there and that art school was the place he needed to be.
Finally, a call came in late October that we needed to pick him up … that he was leaving school. When his father picked him up, his color was ashen, almost gray-green. He had lost weight and his face and scalp had deep, acne-like lesions. When he got home, he slept most of the day for 2 weeks and when he wasn’t sleeping, he was eating. We were shocked to find out that he had not had bread, a sandwich, or a pizza since he left home. When I questioned him, he said after the first 2 weeks the gluten-free station had only rice cereal and cupcakes. That was all. He never saw the gluten-free pasta served. His diet had become increasingly restricted. He told us that another celiac student had narrowed her diet to--in her words-- ‘lots of green beans.’ There was never any contact with the gluten-free students about the diet or any follow-up by the nurse. Our son required a visit to the hospital for tests for a minor medical issue, but even then the nurse didn’t inquire as to how his diet was going.
A Big Expense
We took my son to his GI specialist within a week of his return home and the doctor agreed that all of his symptoms appeared to be the effects of gluten exposure. His doctor also told us that it was, unfortunately, all too common for his practice to see college students in the same condition after trying to live in the dorms and eat college dining food.
Armed with that knowledge, I approached the school and asked for some kind of refund, at the very least a refund of the $2,600 dining hall portion. Their immediate reaction was to blame our son for not coming forward. My response was that they promised to check in with him, and not one staff person did. Not the nurse, not the chef, not the dining hall manager, no one. When he had met with the dean to withdraw, unbelievably neither were we called, nor was his sickly appearance noted. He withdrew before the term was over. In the end, the school refunded the unused portion of his dining hall payment, which means we paid for the food that ‘glutened’ him and he lost most of the $18,000 college nest egg that he inherited from all four of his grandparents, as the school has stated that they cannot refund tuition as our son withdrew.
In summary, the school promised us that they would feed our son gluten-free safely and look out for him in every way. Instead, they did not provide safe gluten-free meal options and overlooked his deterioration in health and obvious signs of being “glutened.” For this we paid? Only now after 3 weeks back at home, eating safe gluten-free food is our son’s health returning. Sending our kids off to college is challenging enough without considering their gluten-free needs. When those are factored in and schools make promises they don’t keep, our children’s health and college funds are severely affected.
Next, I will share the unexpected consequences of some of the choices we made in the hope of finding a safe environment for our gluten-free college students and offer tips to avoid some of the mistakes. There are some very expensive lessons that affected our savings and our children’s health.
Beyond Celiac offers gluten-free training for college dining services.
Learn more about GREAT Schools, Colleges and Camps
More articles from this series:
Learn more about Wendy's experience:
Resources for gluten-free college students:
More about Gluten-Free in College