The other day I could just feel this mother’s pain as she told her story of struggle in attaining gluten-free accommodations for her two children at school. “Has anyone else been so frustrated that they just sat and cried?” she said about a recent exchange she had with her elementary school where her two gluten-free children attend. Unfortunately many of us have.

I asked her if I could tell her story on my blog without giving out her name or school district, as she is trying to handle this situation on her own at this point. She agreed. I am using her story based on her emails of questions and comments she sent to our group. Hopefully we can learn from her story plus, maybe some readers can comment on how they got through similar rough times.

The Gluten-Free Fight

It began when this mom, I’ll call Polly, posed to our support group a question, how are the parents getting supplemental food from home reheated at school? The school’s kitchen employees were doing it on occasion for her per her children’s 504 plans, but within one week’s time, the school put an end to the “re-heating” agreement saying that it goes against a USDA code saying food from a private home can’t be eaten in a food establishment.  She was told all kitchens managed by the company which manages her school’s kitchen, follow this code.

Polly says the reason why she was even supplementing the kitchen on things like ground beef, is because their meat equivalent isn’t gluten-free. Polly’s biggest issue here appears to be supplementing to make the meal complete.  She is able to get gluten-free items on the menu — like gluten-free noodles, but apparently not gluten-free meat.

Now she’s been told this “supplementing” can’t happen anymore because of the USDA code. As she kept digging for answers, she said it came to a head this week when the school business office told her to “stop calling and emailing with questions” and that she was apparently “…asking questions that no one has asked before.” That’s when the aforementioned frustration and tears set in. Polly explains in her more recent email, “I feel like I’m being an advocate, but was told I am asking too many questions. How are we supposed to figure this out if we don’t ask? I can definitely see why it would be easier just to send meals every day.”

As the days pressed on, some progress on Polly’s front.  She found out more information about getting some ground beef that is gluten free, “The Department of Education said that if it is “doctor’s orders”, the school or food service has to accommodate and they believed that to be a reasonable substitution.” It appears this is the next route to take for Polly as she presses on to fight for what our children should have access to at lunch time.

Parents Help Pave the Gluten-Free Way

As parents we try to balance many things when our celiac children want to eat at school: their medical requirements, their legal rights and their desires to fit in, all while trying to not let our emotions get too out of control. When schools and school districts are first approached about arranging gluten-free meals for celiac students, their reactions range widely from full acceptance to complete hesitation, frustration and sometimes a steadfast “no”. Many eventually come around with some type of accommodations after weeks, months, and sometimes more than a year of discussion. But none of it will happen if we as parents don’t take the time to ask, and yes, sometimes fight for it.

The “good” news for us is that the gluten-free diet is becoming more prominent every day. Sooner or later schools will have to make a decision on fixing a system that relies heavily on carbs, breaded items and meat products with fillers in them and ultimately find a cleaner product that is healthier and more people can eat without being alienated. A plan like this could bring harmony between parents of celiac children and school districts much more quickly.

One quick answer about reheating at school. Some parents have been able to make accommodations by getting  approval for kids to use the microwave in the teacher’s lounge.  Check to see if it was paid for with taxpayer dollars, if so, you should be able to get access!  I know one mom who did it just that way!  Other people use a Thermos for hot food.

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