Signal boost: Celiac disease awareness

Some of y’all will remember my relating how Lily and I are nerds (and I’m maybe a little bit of a Wil Wheaton fangirl). Well, it turns out…Wil also is a sib: his sister has Celiac disease, as does their mother. He just posted about this, and about the new website his mom started to help raise awareness for CD. (Check out the comments on Wil’s blog for some website recommendations from Celiac patients – recipes, support, etc.)

In addition to wanting to promote that, I also wanted to share one of those not-quite-perfect response moments I too often have:

It can be extremely frustrating to have a loved one following a specialized diet because their medical conditions demand it, when the rest of the country is seizing upon it as the newest and bestest weight loss plan. (We can talk at some other point about my feelings and my understanding of the science of fat and obesity, but remember: I guest posted at Shapely Prose.) I wouldn’t at all be surprised if a lot of people end up losing weight and/or feeling way better if they reduce gluten in their diets, given how poorly we seem to understand the diversity of human responses to gluten and the preponderance of gluten-filled foods in this country – it’s quite possible that this fad diet will help people learn to cope with milder problems processing gluten. (I think my mom’s been having this problem; I had wondered if it were possibly related to her MS, since autoimmune diseases are just fun like that, to my non-professional mind: if your body is attacking itself, who’s to say what the fallout will be?)

So this little petty voice inside of me insists on snarking: gluten-free is a fad diet, even if that’s not how it started or its most crucial role and people are going to blithely skip about, reveling in their weight loss miracles and totally ignoring the fact that they’re benefitting from a diet that is, literally, a matter of life and death for a lot of people. Kinda like the Atkins diet; total fad diet, and yet based on the ketogenic diet that is the last resort for a lot of people with otherwise intractable epilepsy. You know, the way my sister’s may be headed. It can be ridiculously irritating to observe, and I know I’ve gotten mad more than a couple of times because of the waves of popularity of the Atkins-related diets and the lack of awareness accompanying that about the people who need such diets for therapeutic reasons.

Maybe someday I’ll post about food in more detail here. I mean, Lily’s diet has to be fairly carefully externally regulated, given that her anticonvulsants affect her appetite, and my parents are being super careful with her in the wake of her nearly-fatal Salmonella infection. Both of my parents have had their gallbladders removed, Mom’s got MS, and Dad’s got diabetes. The requirements and preferences of any of us are likely to run afoul of someone else’s requirements and preferences, which is not such a delicious development. (Hey, I just realized why I am so insistent on eating what I like when I want these days: I’m fighting what feels like the inevitable lack of food freedom. Sigh.)

/end snark and fussiness

I know people with Celiac and have known people with gluten and related sensitivities and allergies for years, but clearly not enough people are in the know. So congrats and thanks, Mrs. Wheaton, for the new website, and thanks to Wil for sharing!


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