The first in a series about one mom's fight for gluten-free needs 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. Learn about NFCA's gluten-free training program for colleges: GREAT Schools.]
Last August I sent two very different kids off to college. About the only things they have in common are their parents and celiac disease. I’m sharing both their stories to show how similar the responses from their different colleges were and to share some tips on how to avoid some of the mistakes we made and unexpected pitfalls on the path to gluten-free college.
A Little Background
My youngest went to public school for 4 years and then decided to leave high school and start college 2 years early. The first thing she wrote when she was age 5 was the recipe for her special scrambled eggs. She started pushing a chair up to the stove to cook when she was 4. She is the competitive athlete, the one with to-do lists on three bulletin boards and an iCal calendar on her laptop. She has three blogs and an interest in every new piece of technology on the market. She is the joiner, the planner of surprise parties and dinner parties where 10 or 12 of her closest friends enjoy the meals she plans and makes from scratch. She is developing recipes and planning a self-published cookbook. She is actively recruiting the best and brightest students now graduating from her high school class to join her at her college.
My daughter sent an email to the dining hall management the day she moved into the dorms to offer her help in making sure the gluten-free food they had promised was safe. Her career plan was to get a liberal arts degree first, then go to culinary school. Her interest in the foodservice industry made her want to be actively involved in the dining hall, and she asked for an internship or even a line cook job at the school. She has been on an advisory board to help guide the gluten-free and allergen-friendly menu choices and programs at her college.
This small liberal arts college courted her, and after a visit, her plans to attend a much less expensive, large Ohio university were changed. Both times I was on campus, I quizzed the dining hall manager and staff about the availability of gluten-free choices in the dining hall and was assured that they could feed my daughter a gluten-free diet, and even accommodate her other food sensitivities to raw fruits and vegetables.
When she started school, the menu options immediately dwindled when she saw the ‘safe’ grilled chicken that they offered her was being grilled on the same flat top grill where giant grilled cheese sandwiches were made for lunch every day. Her confidence bottomed out in week one when the staff didn’t know about the cross-contamination issues. Her safe choices were bunless burgers, baked potatoes and handfuls of broccoli ‘stolen’ from the salad bar and taken back to her room to microwave. This was not a very satisfactory or sufficient diet for an athlete practicing 3 hours a day or a student with a full schedule.
The advisory board composed of students with special dietary needs, administration members and dining staff started meeting, and there were one-on-one meetings during the first half of the semester. However, only a few of the staff members on the serving line seemed to know what my daughter needed, and if they were really busy or she couldn’t find them, she simply left the dining hall. Instead, she relied on the prepared meals we had made at home for emergencies. The emergency meals became her full-time menu while she continued to advise the dining hall staff.
Changing the Menu
By the end of October, after countless meetings with the advisory board, she was frustrated with the lack of change in the dining hall and still relying on the home-cooked freezer meals. She was ready to call in Mom and Dad, but made one more attempt to get a tour of the kitchen with a chance to read labels and advise the new chef. She was finally successful on November 8th, 12 weeks after she moved into the dorms. That week, there was a gluten-free cake, and the following week signs offering gluten-free pizza and gluten-free French fries appeared. They were implementing her ideas and using a dedicated fryer to make safe gluten-free fries. By week 13, they were handing her French Meadow brownies with her gluten-free meal that she finally wasn’t afraid to eat. The next week, she was sending me texts with photos of complete meals with safe chicken and veggies and dessert. Finally, the meals and choices being offered were safe and sufficient in calories to support her busy life at college.
Seeing her advice and ideas implemented in the dining hall was gratifying to her and gave her a sense of pride and accomplishment. She enjoyed working with the staff, the chef, and the managers to make the dining hall safe for other students. Yet, her parents were thinking about the next tuition payments, the $100 a week to stock her freezer with homemade food and the $50 trips to the grocery store she was making to get fresh foods. It all made the $2,400 dining hall fee seem unfair. It felt like we were subsidizing the foodservice corporation as well as the school that had promised our daughter safe meals starting in August, but didn’t deliver until mid-November.
The Financial Side
I called the business office to inquire about a rollover of her dining hall credits because she had not even used half of the meals. I was immediately told they didn’t do that, and I asked to speak to the decision-maker. Another call and the immediate response was that it was my daughter’s fault for not complaining sooner and that they needed to talk to my daughter in person or on the phone to explain the situation. I felt bullied and disrespected, and I believed that my child was going to get the same treatment. I immediately called the Dean of Residence Life and explained our situation. His first response was that no one else was complaining about the lack of gluten-free meals and that he had heard our daughter was working with the dining hall. Again, the knee-jerk, institutional reaction was that it was her fault. In addition, it seemed that her willingness to help had actually worked against her.
We supported her choice to go to this school, and were willing to make the financial sacrifices because it was a smaller setting. Therefore, we thought the school would do a better job of looking after her dietary needs, especially as it appeared to offer a friendly, almost family atmosphere. There was encouragement to get active and involved and that suited our daughter’s style, too. We believe we did the right thing by letting her get involved to make the changes that would benefit not only her, but also all the students who used the dining hall. We were proud that she was taking an activist position and advocating for change. Despite our daughter’s patience and willingness to work with and educate the school staff, the school administration defended their position that it was our fault that she couldn’t eat in the dining hall safely until mid-November.
In the end, the school offered next semester’s dining plans at a 50% discount. It still leaves my family paying hundreds of dollars more than we’d like to, but I’m glad changes are in motion.
More articles from this series:
Learn more about Wendy's experience:
Resources for gluten-free college students: