[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 began with candid accounts of each battle and now concludes with lessons learned to help you avoid similar struggles. Learn about the Beyond Celiac gluten-free training program for colleges: www.BeyondCeliac.org/GREATKitchens]
Read: Part 1 | Part 2
1. Each Dining Hall is Different
We researched the two foodservice programs that were responsible for the dining halls at each school and found that both received accolades and awards in the areas of serving special diets, using local and organic produce, and encouraging healthy eating on college campuses. Despite that, we discovered that the lessons learned and programs within the corporations are not shared among kitchens across the country or around the world. Each dining hall manager or chef is left to research, train and implement the programs on his or her own initiative. It takes interest and commitment on the part of each individual to reinvent a foodservice program and create new initiatives from the ground up. Learning kitchen procedures that reduce cross-contamination, which products are available, and the basics of a gluten-free diet is something each individual had to investigate and implement, and they did so with varying degrees of understanding.
2. Note if the Chef or Manager is New
A red flag should go up if you see that a new chef and/or new manager are at the helm. We had a new chef at one school, and both a new chef and new manager starting in the dining hall at the other. The efforts needed to get their programs running while dealing with the influx of new students put our needs low on the priority list.
3. Bigger Can Be Better
We thought small colleges might be safer. With 150 students in the freshman class at my son’s school and 600 at my daughter’s, we hoped they would get more attention there than they would at the big state universities nearby. However, we came to learn that larger institutions are the ones in the news with the most successful gluten-free programs and serving a much larger and more vocal group of those with celiac disease and gluten intolerance. My son’s school had no students asking for gluten-free meals the previous year and only about four who had identified themselves this year. My daughter’s school had two or three last year and about four to six this year.
4. Beware the Yes Men
During the courtship phase of recruiting students, staff seemed very likely to say yes to every question and request made by parents and students, regardless of whether they truly understood what they were promising. You want to believe these promises. You want to think that your child will be adequately cared for and protected from harm, but be leery of these promises. The promises may be made sincerely, but most do not know the seriousness of the need for gluten-free diets, the repercussions of gluten exposure or the complexities of providing safe food in the dining hall.
5. Document, Document, Document
Get things in writing and document everything, even if you are feeling safe and comfortable at the outset. This is an investment for my family and your family that can cost more than the value of our homes. It is certainly on the same level as big investments where everything is official and documented. We took everyone at their word, and when we complained we got blamed and asked for proof and documentation. We also didn’t take the gluten-free advice offered online to register with the Students with Disabilities Office. In hindsight, we should have used that avenue to emphasize the seriousness of the need for a gluten-free diet. I grumbled when I had to learn to text to communicate with my teens. Now, I have the exact dates and records of conversations because my daughter sent text
s messages after each meeting or meal to let me know what progress she was making. This documentation proved to be useful when I asked for a rollover credit for her meal plan as compensation for limited use of her meal plan this semester.
6. Know Your Child.
Will they be the squeaky wheel? Will they get involved? Will they just narrow their diet to accommodate what is served? Will they identify themselves and ask for a gluten-free meal? Do they have readily apparent GI symptoms that will alert them to problems, or are they silent celiacs that have more subtle signs of gluten exposure? Take all this information into consideration when determining if your child is in fact eating safely. Our daughter will always be safer in the world due to her more typical GI symptoms with immediate onset. It tells her right away she’s in trouble and she adjusts her eating accordingly. Our son has the same symptoms I do---the kind that take a day or two to develop like brain fog, fatigue, flu-like symptoms, depression and finally skin issues. He and I are not going to get early warnings, so we need to be more cautious. In our son’s case, he has been so compliant with the gluten-free diet and also home schooled with almost no possibility of gluten exposure since his diagnosis, so we didn’t really know what his symptoms would be. Given our experience and knowing what I do now, I would choose to get him off-campus housing with his own kitchen or housing in a dorm with a kitchen reserved for special diet students (such kitchens are now beginning to be offered in larger schools).
7. Anticipate Pushback
Expect to be targeted for a share of the blame. Also don’t be surprised if that response from the school’s personnel triggers an emotional reaction for you. I was surprised by the intensity of my reaction when both colleges’ first line of defense was to blame us. As I thought about this surprising emotional intensity, it hit me that it felt like more of the same blaming I had experienced as a mother of two sick kids who didn’t get diagnosed for nearly a decade. As we went to doctor after doctor, I usually left the offices feeling like they thought I was neurotic and my kids weren’t really sick.
Using email or written communication will give you time to process unexpected emotion that may ruffle feathers and, if rashly acted upon, may actually hurt your cause. Contacting the right person---someone with both authority and a “bigger picture” to actually take action on your child’s behalf---will help when dealing with such a situation, too. Don’t go to the business offices to get action if you are asking for refunds or rollovers. Go to the Dean’s offices. The business offices will want to deflect and deflate your complaints as efficiently as possible to protect the school’s bottom line. In our experience, the Dean’s roles are more about working with students and parents to find resolutions to issues. Still, it will take assertive action on your (or your child’s) part to get a resolution in your favor.
8. Stand Your Ground
Prepare to be disappointed in your first attempts and first communication, and be prepared to stand your ground. When I asked for advice and support on Twitter from the online gluten-free community, I was surprised by the intensity of feeling and the advice to go in aggressively and perhaps even with legal advice and support. After our experience, I think those who had been down this road before me may well have been right.
9. Share Your Story
The more we tell others our experience, the more we pave the way to a time when students with celiac disease and gluten intolerance won’t have to fight for the same opportunities to participate in academic life as their peers. One of the rebuttals that both schools offered was that no one else was complaining. If our children (and even we as caring and paying parents) stay silent, the colleges can continue this line of defense. The other defense used at my daughter’s school was that some students go off to college and don’t identify themselves as celiac; instead they try to pretend that they are ‘normal’ and want to eat a ‘normal diet.’ They attempt to not standout at a new school in a new life. While this type of occurrence had nothing to do with the very public stance my daughter was taking, it was offered up in the conversation of why they don’t refund or rollover when students are unhappy with the school food. Let’s take that argument away from the schools by helping our children learn to repeatedly advocate for themselves.
10. Check in Regularly
Can you trust the school nurse or health service and the dining staff to check in with your student? Overall, our daughter’s school has done a good job of working with her despite it taking weeks into the semester to get her a reliable and plentiful diet. On the other hand, our son’s school failed him and us. At both schools, the parents were gathered on move-in day and given the ‘helicopter parent’ lectures. We were told it was time to let go and that the school personnel were trained to take care of our kids. Administrators told us that we needed to step back and let the kids manage on their own; again, the repeated message was “trust the school.”
My hard-earned advice is to keep your helicopter on the pad ready to go and to check in with the school at regular intervals to keep your child on their radar. While college can be the training ground for adulthood and can be a place where our children learn to advocate for themselves and take on the responsibilities of living on their own, colleges can be institutions that often require a more experienced adult confronting them. With the financial risks and the very real health risks, be prepared to stand with your child no matter your child’s strength and experience to advocate for what they need. Keep a close eye on their college experience for signs of trouble, and be willing to act swiftly, firmly and decisively.
Encourage your child's college to get trained in gluten-free. Send them the link to GREAT Schools.
Resources for gluten-free college students:
More about Gluten-Free in College