I've been gluten free for a while, meaning I don't eat any wheat,rye, barley, oats or any of their byproducts, but I'm still running in to a lot of frustrations. After an extremely aggravating phone call with a pharmacist today I realized that in order for me to heal and live with celiac, I have to tell other people about it. For the most part, being gluten free isn't that hard. But the hard things are really hard. Needing to avoid all forms of gluten means I can't eat any processed food (unless it's made in an entirely gluten free factory), I can't eat out at restaurants, and I have to make sure I always have food with me. It also means I'm learning to cook and experimenting with new grains and meat (I like to think of myself as a 'recovering vegetarian' now).
The hardest part, by far, is explaining to folks why I can't eat what they made,or go out for lunch with my coworkers or why my medications have to be gluten free. Hence this blog, to explain to my friends and family and whoever else may decide to read it, what it's like.
Most recently I had to get a prescription filled at my local Walgreen's. I asked the pharmacists to make sure the medications were gluten free and I explained my predicament. They told me none of the ingredients had wheat in them, so I didn't have to worry. I patiently explained that in fact, I did, because gluten is often used as a 'filler' or binder' and if they could please call the manufacturer, that would be lovely. The manufacturer was closed,so I left. This morning I called back and spoke to the pharmacist who told me I didn't have to worry about gluten in my medication because I don't have an anaphylactic reaction,so it doesn't matter. I spent about 5 minutes trying to explain why it did matter before she finally agreed to call the manufacturer again. I'm still not totally sure the medication is gluten free...
The interaction with the pharmacist made me realize that there's a huge need for education about Celiac Disease. Here's some basic info on it: http://www.celiac.com/articles/572/1/A-Summary-of-Celiac-Disease-and-Gluten-Intolerance-by-Scott-Adams/Page1.html
Check it out!