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10 Things I Wish People Knew About Living With Celiac Disease

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Imagine growing up constantly feeling sick and not knowing why. Feeling queasy every morning and not knowing why. Having a foggy head and complete inability to focus and not knowing why. Being told you have 20/20 vision but blurry eyes and not knowing why. Going from being “too skinny” to “too large” too quickly and not knowing why. Having to miss school and being mocked for it but not knowing why. Being told “you’re faking it” or “that isn’t happening” and not knowing why. Having teachers tell you they don’t believe you because there’s no diagnosis and not knowing why.

Why? Why was this this first 18 years of my life? Why did I have so many seemingly unconnected symptoms? Why did it take so long to diagnose?

Because of I have celiac disease, that’s why.

What is celiac? According to the Celiac Disease Foundation, “Celiac disease is an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for longterm health complications.”

There are about 300 known symptoms of celiac disease, making it incredibly difficult to diagnose. I was misdiagnosed as anemic and having chronic fatigue and lactose intolerance.

Once the diagnosis came in, I felt a wave of relief. “Eating gluten-free can’t be that hard,” I thought. While it’s not actually that difficult, there were some life changes I hadn’t expected. There are a lot of misconceptions about celiac disease and gluten-free eating. And there are a few things I wish people knew…

1. A lot of people think it’s their place to comment and ask presumptive questions. It isn’t.

“Is it like celiac or is it, like, a fad thing?” “Are you just trying to lose weight?” “That’s such a stupid fad.” Eating gluten-free is not a choice for me. And while you may think you’re being funny, it’s really none of your business why I have to do this.

2. No, I can’t just “eat a little.” It will end really poorly.

3. Yes, cross-contamination really will make me sick.

4. I actually hate talking about it. Especially with restaurant staff. But I have to, or I’ll get sick.

5. If I do somehow get “glutened,” I can’t put thoughts together, I have no appetite, I feel queasy all the time, my muscles feel weak and all my brain and body want me to do is sleep.

But everyone’s symptoms vary, so you may have no idea someone you know got glutened, or they may throw up all over you.

6. When I’m “glutened,” it can take months for me to recover. I have to change my diet, sleeping habits and active lifestyle to try to get back to normal as fast as possible.

7. Jokes and off-hand comments put me on the defensive and make me feel like I have to justify this really hard part of my life to you.

8. Celiac can ultimately cause malnutrition, which can ultimately cause death. So it’s really not a funny thing to joke about.

9. Basically, celiac is actually a serious autoimmune disorder. And I want people to know that.

10. But it’s one small part of my life. It doesn’t define me. And I’m so much more than my disease.

Originally published: September 5, 2015
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