Gluten “Allergy” is a Necessary Lie

A friend posted this article on facebook, which includes a list of “Busted Myths,” where allergists bemoan the use of what they consider to be a medically inaccurate term: “Allergic to Gluten.”

Myth 2: No bread for me; I’m allergic to gluten!
Two words these days that make any allergist sigh: gluten allergy.
“Gluten has been blamed for all that ails humanity,” Stukus [the allergist and professor] says. But there are only three disorders you can attribute to gluten on a scientific basis, he says: celiac disease, wheat allergies and non-celiac gluten sensitivity.
“Then there’s this claim about ‘gluten allergy,’ which really doesn’t exist,” Stukus says. “It’s not really a recognized allergy. Wheat is a recognized allergy — but a lot of people will misinterpret that as gluten.”

He’s taking issue with the the over-simplification of the term: “gluten allergy.” But sometimes, that over-simplification is necessary… even to the point of being a little whitish lie.

Frankly, I say I have an allergy, when I don’t. Despite what I put on my medical forms, and what I tell stage managers, craft services, party organizers, and my bosses at all my various jobs, I am not allergic to gluten. And—according to the last time I underwent what is a notoriously unreliable test—I do not have celiac disease.

So why don’t I eat gluten? I have one of the 3 “real things” listed above in the article, a “non-celiac gluten sensitivity.” Which includes, but is not exclusive to, wheat.

But try to say that and have it understood or taken seriously. Sensitivity. It just sounds a touch hypochondriacal and an eensy bit exaggerated, doesn’t it? Well, there’s a lot of real issues and symptoms that go with sensitivity, and intensify with severe celiac disease.

When I was little, as young as 4 and 5, we knew I just couldn’t always deal well with all kinds of foods, but we didn’t realize the common ingredients, or know what was wrong. So my family just discreetly, and accurately, said, “Emilie has a touchy tummy.” Doesn’t sound serious, does it?

Then, around 22, I saw a doctor, eliminated wheat, and improved the quality of my life forever.

But before I just adopted the blanket statement, “I’m allergic to gluten,” people would tell me, “There’s only half a cup of flour in it,” or “It’s all wheat free! I used oats/rye, so you should be ok.” They mostly meant well, and were trying to put me at my ease. But truly, I could tell that even my friends and people who were used to managing dietary restrictions just… didn’t quite believe it was… y’know… a big deal.

Of course, that was several years ago, and —thanks to the common usage of the reviled term— “gluten allergy” is something more, if not all, people can understand. It’s true, GF diets have become somewhat faddish… but it’s also something that is getting recognized more and more as a healthy option for a lot of people who didn’t realize how bad they felt before going cold turkey. There are a lot of people who are sensitive, but not allergic.

And I’m lucky. I don’t get a lot of the more severe symptoms, like hives, or joint pain, psoriasis and other skin rashes, or problems with the functions of my internal organs. But I—and many, many others who are “just sensitive”—do get debilitating stomach pain and digestive problems. I am chronically anemic. My doctors always remind me I need to keep on top of bone density issues. I have nerve problems in my fingers and toes, which may or may not be connected, but are typically symptomatic. I get migraines and acid reflux when I eat wheat and other no-no grains.

So, when it comes to “just a half-cup of flour,” or “only in the sauce,” I simply make the decision to avoid degrees of legitimate claims and nip the whole thing in the bud. With apologies to the allergist community.

“Oh, sorry, I really can’t.  It will make me sick. I’m allergic.”

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