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I wasn’t sure if I wanted to be completely honest about my Celiac Disease and how… I never actually got diagnosed. Thats right, it was a self diagnosis. Hardly credible, right? You can check out My Story for more details about how I came to that diagnosis and come to your own conclusion.
But I wanted to talk about why I wasn’t diagnosed when I came home from my service. Its pretty simple.
The diagnosis isn’t worth it to me.
Let me explain. If you remember in my story, I went through six months of pure unadulterated hell. There were times I literally pulled out my hair, screamed because the buzzing got to loud, and even when I thought I was dying.
I never want to feel that way again.
When diagnosing Celiac Disease, there are two main tests; a blood test and an endoscopy biopsy. Simple, yes?
And while the Endoscopy is the go to way for actual screening, it too requires a month of being glutened, and then they knock you out and stick a tube down your throat and into your stomach and then into your lower intestines and take four samples. It is only accurate if your intestines have already been damaged.
Both of those options aren’t good enough. Like my Peace Corps medical officer said to me that day, “If you know gluten causes you an issue, then don’t eat it.” I can’t ever be sick like that again. I still regularly get glutened and it’s been hard. But there is no way I’d want to survived a whole month (or sometimes more) just so “I know for sure.” I know as sure as I’m ever going to know. When they come up with a test that doesn’t require anesthesia or a gluten challenge (even for a day; I won’t be able to make the doctor’s appointment the next!) then maybe I’ll consider it. Until then, I hope for the best, plan for the worst, and celebrate every non-glutened day.