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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.

I have two daughters.  My 2-year old was recently tested for celiac and it came back negative. However, she eats mostly GF so my husband and I expected it to be negative. Our plan is to allow more gluten in her diet this year as she starts preschool. 
 
We cook GF meals at our house; however, my husband (who is not celiac) has a separate toaster for his bread and breakfast foods. Since he eats regular (not GF) breakfasts and whatever he wants for lunch at work, he doesn't mind GF dinners. He actually enjoys all the GF food I make -- rice pasta, GF quiche, GF cornbread, brownies, etc. We don't take the attitude that its subpar. We often cook many naturally GF foods anyhow. The only thing he doesn't like is the gluten-free bread.

What I Know Now: 

• It’s not rare. Having a chronic condition, especially as a child or young adult can be isolating. It makes you different. A special diet like the gluten-free diet doesn’t help you fit in either. But celiac disease is common. One percent of us have it, even though most don’t know it.

• You didn’t eat too much gluten to cause it. I often wondered whether my love for the pasta bar in high school led to celiac. My doctor assured me it didn’t.

• You have to be assertive. This is a trait I’m still growing into. To be diagnosed, you may have to step outside your comfort zone with your doctor, insisting to be tested. Once diagnosed, it may be awkward to ask a waiter, your mom, or your best friend if there’s flour, croutons, or soy sauce in a dish three times, but you need to speak up and ensure your food is safe.  

• You might gain weight after being diagnosed. I gained about 10 pounds since I was finally absorbing the nutrients and fats in my food.

• Don’t do it alone. See a dietician that specializes in celiac when you’re first diagnosed and considering ‘treating’ yourself to another visit months or even years later. Information changes and your enthusiasm for the diet may wane at times. A dietician can spice things back up for you.

My go-to resources:

Celiac.com

http://www.celiac.com/

For news and checking the gluten status of foods.

Gluten Free Drugs

http://www.glutenfreedrugs.com/

For information on which medications are safe.

CeliacChicks

http://www.celiacchicks.com/

For fun and because I used to live in New York City.

Gluten-free Girl and the Chef

http://glutenfreegirl.blogspot.com/

For cooking inspiration and gluten-free recipes.

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

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