Celiac Disease

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A Celiac Story: A Delayed Diagnosis

I had celiac disease for nearly a decade before finally being diagnosed in April 2005. Unfortunately, my experience with a delayed diagnosis isn’t terribly unique. I once read that celiac disease may be America’s most under diagnosed health problem.

Here’s my story:

It started in high school. My stomach was always bothering me with painful cramping and bloating. I was also tired all the time, never able to keep up with my friends at track practice or on the hockey field. But I wasn’t really concerned, figuring I just wasn’t as athletic as them. I chalked my ongoing stomach troubles to nerves.

The symptoms continued through college and into my early 20s, becoming the norm for me.

It wasn’t until I noticed that my hair and nails were weak – fraying and splitting -- and I was frequently short of breath that I started to worry, making an appointment with my doctor.

He ran some blood tests and discovered I had a “profound” case of iron deficiency anemia, which could account for most of my symptoms – fatigue, shortness of breath, brittle hair and nails. I was given an iron supplement and sent on my way, relieved to have a seemingly simple fix.

Several years later, still dutifully taking my iron pills and feeling a bit peppier, I moved to a new town and found a new doctor. When I told her how much iron I was taking she was appalled. That’s not normal, she told me. In fact, it could be dangerous. She mentioned some potential causes for my anemia, like celiac disease, and sent me off to the lab for several blood tests.

I’ll never forget watching the label-making machine spit out label after label, wondering when it was going to stop. They drew at least 10 tubes of blood that day.

When I returned home from the lab -- literally drained -- I Googled “celiac disease.” As I read through website after website, I realized I had all the signs and symptoms of it -- a classic case.

Although I hadn’t been officially diagnosed yet, I was already frustrated that my doctors hadn’t picked up on it. I blamed myself too. Why had I put up with such miserable symptoms all those years?

While I waited for the test results, I made myself a farewell meal, consisting of my favorite gluten-rich guilty pleasures. I had a crusty New York style pepperoni pizza followed by a slightly underdone batch of Duncan Hines fudge brownies.

Several days later I got the call, “Your blood tests for celiac were off the charts.” To confirm the diagnosis, my doctor scheduled an endoscopy for the following week.

After the endoscopy confirmed what I already knew to be true, I was sent for a bone scan. It revealed my bones had taken a hit too. Years of undiagnosed celiac disease had starved them of calcium and other key nutrients.

All this news was hard to take. I went from being laid-back about my health to being a bit of a hypochondriac. I suddenly felt like I couldn’t trust my own body anymore, like it was fragile and sick.

But I didn’t have much time to mope. To get healthy I had to learn the ins and outs of the gluten-free diet, which is no easy task.

I quickly discovered that you don’t master the gluten-free diet overnight. In fact, you have to constantly keep up with it. The basics don’t change – you must avoid wheat, barley and rye -- but there are many evolving, sometimes gray areas. Vinegar, once a no-no, is now okay as long as it’s distilled. McDonald’s French fries may be safe one month, but later be declared unsafe. Ditto for oats.

It’s been five years since my celiac diagnosis. Even though I’ve had a few slip-ups, like mistaking wheat-free for gluten-free in the beginning, I’ve never felt better. I’m definitely not sick.

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Christine B. is the mother of two young daughters and lives in Baltimore, Maryland.

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