Equality. That’s all any parent wants for his or her child. In this case I’m talking about food at school. Are you completely frustrated that you can’t get a gluten-free lunch for your child at school? According to a recent survey by the American Celiac Disease Alliance, many parents of celiac children may feel the same way. The survey conducted during the summer of 2008, found of 2,200 respondents, 90% had to regularly pack gluten-free lunches for their celiac child. I used to be one of them: stuck feeling like I was banging my head against a wall trying to get a few hot lunches for my child. That goal of equality saw me through a journey — years in the making — that would eventually pay off.
Just before my celiac daughter’s kindergarten year began, I thought I covered all my bases. I talked to the school nurse, Emma’s teacher, and the head of the cafeteria about her condition and her diet. I found there was very little she could have at school except beef tacos, which she loved. Eventually that one menu item, which made my daughter feel just like the rest of the kids, vanished; a near tragedy for her, sheer frustration for me. I would ask myself “Why do the schools have to serve up so much food with gluten?” I also didn’t feel like I was taken seriously by the cafeteria employees. I housed some small gluten-free food items in the freezer at school in case of emergency. That expensive food was thrown away, with no one even realizing they did it. That told me, they weren’t paying attention. And I was done. It seemed as though Emma was destined for cold lunches until she graduated from high school.
Honestly, school lunches may not be the perfect meals for our children, but suddenly many parents feel an urgency to feed them school food when their celiac child starts to feel left out.
The good news is: times may be changing. Sherri Knutson, Student Nutrition Services Coordinator for the Rochester, Minnesota School District, and her staff have developed a monthly gluten-free, menu for students. “We’re making it come together…to meet the needs of the student,” Knutson said. It is more like students! As many as 20 children every day order from this menu which actually mirrors the “regular” monthly menu, including gluten-free chicken nuggets, spaghetti and hamburgers WITH a bun. Knutson says they started slow in 2004, offering only a few gluten-free options each week and then expanded from there.
Offering the menu comes at a cost – to the district. Officials with the US Department of Agriculture (USDA), which oversees the school lunch program, say schools cannot charge parents more for specialized, expensive diets. A regular school lunch in that district costs $2.05, but the gluten-free lunch costs about double. Knutson’s district essentially “eats” the cost. “Cost is not one of the factors that should impact [implementing this diet in schools].” But she admits they look into finding ways to cut costs, like baking their own gluten-free goodies.
Now word is spreading about this groundbreaking menu. Knutson says she is getting calls from school districts across the country asking her how she does it. Her answer is simple, start small and do what you can. She also asks parents to be understanding and patient; accommodating the gluten-free diet is very new for most school districts.
My conversation with Knutson was enlightening and empowering, but back at home I was struggling with my own district. There were times in the last four years, where I wondered if the district even cared about my daughter’s health and nutrition needs. After months of many unanswered emails and phone calls with my district nutrition department in late 2007 and early 2008, I finally called my school board member to get some attention. That one phone call got the ball rolling. In the six months since, I have had several meetings with key employees in the district and school. My district also appointed a coordinator for specialized diets who works directly with schools that have special food requirements for certain students. In October of 2008, I saw a first draft if it’s two-week, gluten-free menu. The nutritionist I work with tells me it is just the beginning. I am so pleased and proud of them for finally taking some much-needed action.
It is amazing how far you can come with a lot of work, tenacity and passion for equality. If you are in the same situation that I was, I urge you to take action. If your school cook won’t help you, go to the district nutrition director, if they won’t help you go to the superintendent, if they won’t help you go to the school board, and if they won’t help you, contact the education department in your state. That group may oversee statewide compliance of USDA rules. I was able to get this done without a 504 plan for my child. Simply put, a 504 plan is detailed paperwork which gets you the needed accommodations for your child and their diet. You may need to create a 504 plan to push along the lunch changes for your child. Watch for much more on this important issue in upcoming posts.
I cannot guarantee you will get drastic changes in lunch offerings from your district, so if you are still in a slump, check out the American Celiac Disease Alliance. Serving specialized diets in school is a hot topic right now and the ACDA is trying to advocate for all of us. Your child has a right to eat school food. And this is one food fight – worth getting in on!
*For much more information on the Rochester, MN School District’s Gluten Free menu, see this article I wrote for FoodService Director Magazine in September.
November 4th, 2008 at 2:30 pm
Thanks so much for writing about this topic! I have a 1st grade daughter who was diagnosed at a very young age. Our journey through the school system was very similar to yours. We had a lot of talk and no action for a long time. My daughter just wants an opportunity “to eat like everyone else does sometimes.” We are making some progress, currently Abby eats at least one hot lunch meal per week. We choose the meals that are easiest for the school to modify. Although it would be much simpler to pack a cold lunch, my daughter deserves the same choices as every other child. If I don’t advocate and push the envelope for her, who will? Thanks again for bringing this topic to the forefront. We all need to work to educate the school community on celiac disease and the rights of our children.
February 19th, 2012 at 9:34 pm
As the parent of a celiac child who is also lactose intolerant, I certainly understand the frustration of both parents and child on this subject. My child also has a desire to be able to “eat like the other kids”. I have other children who have allergies that require carrying epipens in case of anaphylactic shock, so this is an issue about which I have great sympathy.
That being said, we need to realize that it is not reasonably possible for the public school or any restaurant to be able to accommodate every possible allergy or food sensitivity issue that may occur within their students/customers. It is our job as parents to provide the specialized diet that our children need and to teach them to be self policing and self reliant in these issues.
Even when dealing with those with the best of intentions and desire to provide a gluten free environment for our children, we need to remember how complicated and overwhelming this was for us at the beginning and we were very motivated to comply. With frequently changing staff as well as the almost universal lack of understanding about what gluten is, we need to remember that this is not an area we can safely hand over to someone else.
August 11th, 2012 at 6:14 pm
My daughter was diagnosed this past November. Prior to that she bought her lunch daily. So I met with the school nurse and head cafeteria lady. They were willing to provide a meal daily. However I found out that the lady at the school would have to shopping just for food for my kid….are you kidding me? I was appalled. We talked about it and came to this agreement (since I could not in good conscience ask this person to go shopping for one child): I would send in up to a week worth of food at a time. They would store and prepare it daily so my daughter could have a gluten free and hot meal. I usually would send the main item daily and sent in bags of frozen vegetables in until used. My daughter was also allowed to take her lunch straight to the kitchen in the morning to allow for proper refrigeration. Right now it is a good compromise for me. And I know my daughter is getting whatshe needs…a wrm, healthy, gluten free lunch.
September 2nd, 2013 at 2:19 pm
I don’t really see the reason for all the hassle. Lots of kids pack their lunches every single day… The only thing I have asked my son’s school to do is to allow access to microwave so that if I send in a lunch that needs heated up he can heat it up… 2 or 3 days a week I will send in meals that are left over from our dinner the night before… chicken etc… and the other days he takes in a sandwhich with gluten free bread. We add fruits and veggies to it as well. Some days he has a juice box, other days he buys milk. But other than maybe his teacher having to help him with the microwave no one has to go to special lengths for him and he is still eating the types of food he needs. He doesn’t feel different than other students. Every one eats their meals and no one treats him different… and people don’t have to go out of their way to accomondate him just because he has an illness. It’s not the school’s fault he has a disease.