Once Upon a Time: My Celiac Disease Diagnosis

Missy baking
Just doing a little baking and eating, back when I could pull off the bib overall look.

Once upon a time there was a little girl who loved wheat. Cookies, toast, pasties, pizza, glazed donuts, pasta. You name it, she probably ate it. She loved it all. Her love of baking started at an early age when she’d help her mom mix cookie or cake dough with the promise of getting to lick the beaters. She loved Sunday mornings when she got to visit her dad’s bakery and he’d make frosting flowers on the back of her hand. Her addiction was accepted because whole wheat was good for her. It helped her run harder, have more energy to take tests, and provided her with the nutrients she needed to be a healthy kid.

Or so it was thought.

You see, I was that girl. I was the one who ignored the stomach aches and fought through the cramps after carb loading for a big race. I was the girl who dealt with dental enamel discoloration and constant headaches and canker sores. As I entered adulthood, I felt sluggish every afternoon and my feet went numb when running. In bed at night my joints ached and my legs tingled. I was tested for MS. There were no lesions, but my questions went unanswered. I suffered three miscarriages. I developed anemia and allergy-induced asthma. The canker sores became more frequent and I was constantly ill. I had a respiratory infection three times in 1999, all while being on a daily asthma pill and two different inhalers.

The cankers sores went from uncomfortable and irritating to excruciating when my husband was deployed to Iraq, in 2004. I blamed it on stress, which I’m sure didn’t help the situation, but it was more than that. The sores were often the size of a pencil eraser head and they were constant. I used an over the counter medication before being given a stronger prescription by my dentist. Eventually I found that the only thing that soothed them was a vanilla milkshake. My children and sisters loved our frequent visits to Dairy Queen, but the ice cream only managed to mask the symptoms briefly.

My mom told me that she’d read something about wheat allergies and celiac disease. She wondered if I might have that because my symptoms were similar.

A wheat allergy? No, no, no. That’s so not happening. Hahahaha. No.

My husband returned from Iraq. We moved to Kentucky and I ran my first half marathon. My feet were numb for five miles. I became pregnant a year later. I miscarried at six weeks.

My youngest was born a year after that and our family was complete. I was tired a lot, but what mom isn’t with three young kids? That’s what I asked myself, although I knew something was different this time. I kept getting sick and the anemia wasn’t letting up. I had to wean my daughter at nine months because my milk supply was virtually non-existent and she wasn’t gaining weight. My legs were tingling a lot and I felt depleted all the time. I was treated for postpartum depression to help with the aches, but then my mouth started to go dry. I literally could not drink enough water. Still, I was parched as if I hadn’t had a drop.

I went to the doctor, convinced I was diabetic. She took a blood test, which came back normal, and told me I had thrush due to the dry mouth. She prescribed some anti-yeast tablets and told me to come back in a couple of weeks if I wasn’t feeling better.

Two weeks later, I was worse. I could barely eat because everything I ate dried up my mouth. I even tried bananas thinking that I had a potassium deficiency, and I hate bananas. Nothing worked. So I started keeping track of what dried my mouth the most.

Pizza-yes. Pasta-yes. Bread-yes. The kids’ left-over chicken nuggets- yes.

Basically everything I loved and ate every day.

I went back to the doctor and told her that I wanted to be tested for celiac disease because every time I ate wheat, my mouth dried up. The conversation pretty much went like this…

Doctor: Do you have diarrhea?

Me: No.

Doctor: Then you don’t have celiac sprue.

Me: Can I have the test anyway?

Doctor: I can’t order the test because you don’t have diarrhea.

Me: Why?

Doctor: Well, fine. But what do you want me to put on the lab sheet? Are you constipated?

Me: No.

Doctor: The insurance won’t pay for the test unless you have a symptom. I guess I’ll just write that you’re constipated.

Me: Okay?

Doctor: But you’re not constipated so you don’t need this test.

Me: Okay? You can tell them I’m constipated. It’s not like they’re going to check.

mean girls

I had the test.

Two weeks later, the doctor-who-must-not-be-named called and asked me to come in. She breezed (seriously, breezed) into the room and announced, “We’ve figured it out! You have celiac sprue!”

Me: What should I do now? And good God, why is she so happy?

Doctor: Just never eat gluten again.

Me: Just don’t eat it? Should I see a specialist or dietician or something?

Doctor: You don’t need to. Just don’t eat wheat.

I breezed out of the room, found a new physician, and visited a gastroenterologist. When the gastroenterologist told me to continue eating gluten up until the biopsy, I did just that. I ate. All. The. Things.

I also got really sick and could barely swallow for a week. At my follow-up appointment, he told me that my lab results indicated that I did have celiac disease. I went to my minivan and cried.

giphy-facebook_s_jpg

It wasn’t pretty.

However, that was just the start of my journey. It’s gotten easier and I do feel better. It may not have been the happiest ending, but it certainly wasn’t a tragedy, and really, it wasn’t an ending at all.

It was a beginning.

For my tips on going gluten-free,  please click on the Celiac Disease tab.

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