My daughter was diagnosed at 15 months old back in 2000. I have been passionate about celiac disease and the gluten free diet ever since. Now my brother was just diagnosed and during the 2008-2009 school year my husband and I took in a Norwegian exchange student with celiac disease. I have just started a blog called www.thesavvyceliac.com and enjoy sharing my views and experiences with others through my blog.
Celiac.com 10/29/2008 - 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 and was 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 2008.