On Celiac and Being Gluten Free

Other than posting all gluten free recipes, I don’t tend to talk much about being gluten free. Mostly that’s because so many other lovely people have done so already, and very well. Even most foodies who can eat gluten know about Shauna from Gluten Free Girl, who has written extensively and thoughtfully on the topic, and just this week I came across this post on Michael Ruhlman’s blog, in which he interviews Carol Blymire on what it means to have Celiac—her description of the symptoms are pretty evocative, and I had a gut-level cringe factor and belly laugh going at the same time. I’ve been there. As a semi-non-sequitur, I want this t-shirt. But here goes: my (brief and annotated) story:

I am what I call “undiagnosed Celiac.” Translated, that means that we pretty much know that’s what made me sick for a decade before I stopped eating gluten. On top of Carol’s laundry list of delightful symptoms, when I first began to develop Celiac at age 18 or 19 (long before we knew what it was), I was a freshman in college, eating meals at the cafeteria, which meant all food was served on bread, in bread, topped with croutons, or over pasta. When the symptoms began to hit, they hit like a wrecking ball, and my body’s reaction? I stopped eating. I became anorexic—not anorexia nervosa, in which a person is trying to lose weight, but anorexia, in which I just couldn’t eat. I averaged a bowl of oatmeal in my dorm room each day. Just walking by the cafeteria, the smell of the food would make me nauseous.

Well, I at least made the connection then that cafeteria eating was not the way to go. I starting cooking more foods for myself, or buying premade health foods at the natural foods store. It got better-ish, but I never got well. I got used to running at extreme highs and lows of energy, having awful bouts of diarrhea, I experienced many times the mad dash for the bathroom. I also remember the weird rashes, headaches, horrible mood swings, joint pain. I got used to being ill. For ten years.

Then I met a lovely woman who happened to have Celiac. We became friends, and one night, over a bottle of wine and some lovely gluten free homecooking in her kitchen, I told her about my experience, starting with the anorexia and depression, straight on through a recent experience of falling apart in the middle of Lowes after eating a couple pancakes for breakfast. This wonderful person made the connection, thanks be to the PTB, and said, “Hmmm. That sounds a lot like what I went through before I was diagnosed. Maybe you should try being gluten free?”

I set a date—May 1, 2007—to start my gluten free regimen, giving myself a couple weeks to replace pantry items and educate myself. And then I jumped in with both feet. Luckily I had a guide who helped me find the best products, and then I re-taught myself how to cook. May 1, 2007, was the first day of my life as a well person.

After a few months, I talked to my dad the doctor about how to get an official diagnosis. He asked, “How do you feel now?” I said, well, I don’t feel sick (insert laundry list of complaints here). He said, “Well, if you really want to confirm that you have Celiac, you just have to start eating gluten again, get sick again, and run a test that your insurance won’t cover. Or you could just keep doing what you’re doing.” I love my dad. He’s pragmatic.

So that’s what I did. I got used to being well, and after being well for a while, my body started to talk to me again, started to trust me again. It started to tell me what felt good, what it craved, what it wanted to avoid. My mind and body reunited, became this power-house team, helping each other, talking to each other, partnered to learn how to live/cook/eat/exercise as well as we could. It’s thrilling to not see your body as the enemy.

There are still times when I get sick with the flu or eat a bad meal or push myself too hard at the gym, and I will begin to gripe at my body, but it doesn’t last long—I quickly remember what my body went through for so long, that now it talks to me, that now it’s unusual to be sick, it stands out rather as the exception rather than the norm or just  “worse than usual.” My body is my long lost friend, found again.


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