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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.

Ever.

When diagnosing Celiac Disease, there are two main tests; a blood test and an endoscopy biopsy. Simple, yes?

 

GLUTEN-FREE MONTH-TO-MONTH PLAN
Not quite. The blood test while simple and non-invasive requires at least  a month of eating gluten daily. According to celiac.org, at least 4 slices of bread kind of gluten. For a month. They call it a Gluten Challenge. (This is a challenge I’d be happy to lose, every time, thank you!) Plus these tests often (up to 15%) come back with false negatives and (hahaha) sometimes come back with false positives!

leo absolutely not

HECK NO I WON’T GO

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.

GLUTEN-FREE MONTH-TO-MONTH PLAN
There are some pretty sweet benefits of having a written diagnosis though. Since the only “cure” for Celiac disease is not eating gluten, it forces you to adopt a gluten free meal plan which then is your “medicine” and therefore can be used as a tax write off. You can learn more about that at celiac.org, if you’re interested. Just make sure you have your doctor approved diagnosis in case the IRS audits you because of all the Udi’s bagels you ate the year before.

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.

 

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GLUTEN-FREE MONTH-TO-MONTH PLAN

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