As the parent of a child recently diagnosed with celiac disease, the learning curve has been very steep and I’ve become well, paranoid. I am afraid to feed her almost anything packaged because, let’s face it, gluten might be lurking somewhere. The other day I fed her a Quaker Rice Cake because it said “gluten-free” on the package. Then I had a friend inform me that just because it says gluten free doesn’t mean that it really is. What?!
Apparently, there are no regulations regarding labeling in this arena. A company does not have to test the final product for gluten nor do they have to guarantee that the product is manufactured in a gluten-free facility in order to say it’s gluten free. Only the ingredients must be gluten free by themselves, technically. Oats and BHT can cause similar reactions to gluten in celiac patients. Who knew? Not me!
I am almost scared to go grocery shopping because what if I select something else that makes her sick? There are some really helpful websites: The Celiac Foundation [www.celiac.org], Celiac Central [www.celiaccentral.org] and Celiac.com [www.celiac.com]
There is a resource guide that can be purchased and this morning I have done just that. It’s being sent overnight express to my home so that I can take it shopping. It’s The Essential Gluten-Free Grocery Guide. You can purchase it on Amazon and at other online stores such as the Gluten Free Mall.
I also feel like a support group would be helpful but I’ve been unable to find any. Do any of you know of a support group or have ideas where I might locate one? I’ve contacted our local Children’s Hospital and emailed all of the above sites but have received nothing back.
I am very committed to ensuring that my daughter has a healthy lifestyle but I also don’t want her to feel defined by her disease, if that makes sense.