Invisible Doesn’t Mean Imaginary: My Experience with Celiac Disease

Invisible Doesn’t Mean Imaginary: My Experience with Celiac Disease

Invisible Doesn’t Mean Imaginary: My Experience with Celiac Disease

March 27, 2019
By: Scott Distasio
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For the first 40 or so years of my life, I prided myself on having a cast-iron stomach. I hardly worried about what I ate. Does that meat look a little under-cooked? No problem; I’ll be fine. Are those ingredients that most people would squirm at? Heap ‘em on my plate. Honestly, and I’m a bit ashamed to admit this, I viewed people who were excessively picky eaters as high-maintenance and difficult. I had no idea that many people who are selective about what they eat have legitimate medical reasons.

One day, I finally understood, because it happened to me. I started experiencing brutal gastrointestinal symptoms. I was in excruciating pain, my digestive system was a mess, and I didn’t know where to turn. I got a colonoscopy, did a battery of tests, and tried out what felt like a million different diets. Nothing under the sun seemed to identify a root cause. At that point, doctors chalked it up to IBS, told me it was all in my head, or raised their hands in resignation over the fact that there was seemingly nothing to be done to remedy my issue.

Then, about eight years into my ordeal, a friend pointed me toward a potential source of my persistent symptoms. “Sounds like you have celiac disease,” they said. “Go to the doctor and tell them that’s what you have and that you need to be tested for it.” At the time, knowledge about celiac disease and gluten sensitivity was far less commonplace than it is now. I had never heard of it, but my friend seemed convinced. I figured it wouldn’t hurt to find out.

The basic test for celiac disease is conducted on a 1 to 100 scale. Anything above 5 is considered gluten intolerant. While the scale technically only goes to 100, it’s possible to score well above that figure. They just don’t have a metric for it. My score was literally off the charts. After an endoscopy, the only way to definitively confirm celiac, it was clear that I was going to need to forsake wheat, barley, and rye immediately and permanently.

At first, that sounded like a herculean endeavor. Wheat, as I’m sure anybody else who can’t eat it will attest to, is in everything. Almost any processed food will contain some wheat derivative. Pasta sauce may be the furthest thing in the world from bread, but many jarred sauces contain wheat. Now, you can’t taste it, and you can’t always glean its purpose, but it’s there all the same. For me, that could result in 24 hours or so of relentless pain. As such, I have to be super mindful of everything I eat all the time.

I’ve learned a lot about myself as a result of my experience with celiac, and I’ve gained empathy for many of my clients. Doctors will often try to downplay the seriousness of injuries that don’t readily show up on their diagnostic tests. I know from experience that just because a doctor can’t see something doesn’t mean it isn’t there. In personal injury cases, however, you don’t have eight years for medicine to figure out what’s wrong with you. That’s why you need representation from people who believe in you and will present your case in the best possible light.

Being sick, injured, or otherwise indisposed is scary stuff — even more so when you don’t know exactly what’s going on. There were times when I doubted the realness of my illness. I now know that was a foolish mistake.

So the next time you are injured and don’t have anyone to turn to, give our office a call. We’re happy to sit down and hear you out, judgment free. Just don’t ask me to break bread with you unless you want to accompany me to the hospital.

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