Celiac, Lies and Vertigo


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As most of you know, I’m the mom of a 3 year old who was recently diagnosed with severe celiac disease. Due to her fragile health, the GI doctors decided to forgo the endoscopy which would confirm her diagnosis until she is healthier. I was fine with this, in fact, I was relieved.

My little one is a pistol – too smart for her own good. She’s been dying to go to preschool since she was 18 months old when her brother started. So, this spring I signed her up at the same preschool he attended. I was clear in all of the paperwork that she had celiac. I even included a separate sheet that explained the condition in plain English.

In early August, I sent a letter from me along with a letter from my daughter’s doctor about the extent of her disease. I requested that she be kept from sensory tables that contained gluten products and that she not play with Play-doh that has gluten in it. The director of the school called me and said that if she could not play with Play-doh, she could not attend preschool. I calmly and politely explained that there are gluten-free options. By the end of our conversation, my daughter could attend school as long as I made homemade gluten-free play dough for the entire class (4 cups per month, a new color each time to match the curriculum). No problem, right? Well, the cost for the ingredients was $40 for one month! I requested reimbursement or a tuition credit and was denied.

Late last week the principal called and said that my little angel had to miss the first day of school because they have a tradition of making friendship necklaces out of Fruit Loops! Again I very calmly and diplomatically offered several gluten-free options and was turned down. It was just too inconvenient. I grudgingly agreed to keep her home. Several days later I had a voice mail that my daughter had to be kept home the following days: the day of the field trip to the pumpkin patch (they hand out pumpkin cookies), the harvest party (too hard to “police” the snacks), the Christmas party, the Valentine party and the end of the year picnic.

Needless to say, I am pissed off! I feel lied to and betrayed. How can they say they will work with me and then say she can’t attend any of the fun things? 

On top of all of this, I’ve been ill since August 15th when I was literally blind-sided by severe vertigo and a splitting headache. I was bed-ridden until several days ago. After a brain MRI, a physical therapy evaluation, my GP’s evaluation, a trip to urgent care and 3 visits to an ear, nose and throat specialist, no one knows what’s going on. I have more appointments next week: neurology; ear, nose and throat specialist; and physical therapy. The drugs the doctor gave me have virtually removed the vertigo symptoms but they make me very groggy and tired and I can’t drive. The downside is the constant splitting headache and occasional blurred vision have yet to resolve regardless of drugs or anything else. 

Sorry I haven’t posted but if I’d tried I would have been puking all over my keyboard. 

What is your experience as a parent or child with food allergies or celiac and schools? Helpful and accommodating or a royal pain in the ass? Please comment, I’m dying to know… I am feeling pretty alone right now.

Thanks! 🙂