the mystery of Celiac

For the last month, I feel like I’ve been trying to solve a puzzle.

The mystery began on May 22.

I specifically remember that day because it was a Sunday morning. I was scheduled to do announcements at church. And I was not feeling well.
My stomach was a mess. I was lightheaded. I couldn’t wait to get home and lie down.

On that very same day, my husband was complaining that he didn’t feel well either. He had a headache, and he was dizzy. By the end of the day, his vision was blurry and he had double vision. It was the first weekend of summer in our home. (School ended the Friday before.) So, I assumed we had just had a jam-packed weekend that had wiped us out.

The next day was the beginning of my husband’s journey with his eye issue. For the next week, I ignored my continued illness and focused on taking care of him. But after a few weeks of feeling ill almost constantly, I was starting to get really worn down. I was lethargic and exhausted. If I wasn’t working or doing something with my kids, I was lying down on the couch.

I had started a consistent exercise routine a few months earlier. Now, I couldn’t even think about walking around the block. Just walking up the stairs left me panting.

I got in to see my primary care physician, and he started trying to make sense of the puzzle.

Have you traveled to a foreign country?
Have you eaten any unusual seafood?
Did you make any extreme changes to your diet?

I had been carefully examining my life during the past few months for clues. They only thing I could think of that HAD been unusual is that about six weeks earlier, I had started a “clean eating” plan. I had cut out all added sugar and sweeteners and stopped eating bread or processed foods. My diet consisted mostly of meat, fruit, veggies, brown rice, sweet potatoes and dairy. I had been faithful to my eating plan for about six weeks.

But about a week before I started getting sick, I had slowly started eating processed food again. Toast. Pasta. Cereal and brownies had started sneaking back into my life. But why would eating healthy food make me sick?

I also started thinking about the bigger picture. I remembered last summer that I had some digestive issues, which I thought were related to drinking coffee. Those had continued off and on for the past year. Perhaps this didn’t start just a few weeks ago. Maybe it had been going on for a while.

The only piece of the puzzle that my doctor could solve was that I was quite anemic. Combined with my constant digestive woes, he gave me some medication for an ulcer. Perhaps I was losing red blood cells through internal bleeding.

At this point, I had been sick everyday for more than three weeks, and I was starting to lose my mind a little. Summer was zooming by while I was lying on the couch day after day. I called a GI doctor, and begged to get an appointment sooner than the six-week wait for new patients. She found a cancellation, and I got in the next week.

The gastroenterologist carefully listened to all of my symptoms. He was ready to help me solve the mystery. He scheduled lab tests, a colonoscopy and endoscopy. He said my best case scenario was E. Coli, salmonella or a parasite. Once we ruled out all of those, he could look for all of the other possible GI issues: colitis, ulcers, Crohn’s disease, Celiac Disease, diverticulitis and cancer, among others.

Just a few days after the tests, he called with what he considered relatively good news. My test was “off the chart” for Celiac Disease.

My first response was, “Hooray! I don’t have cancer!”

In fact, after researching a lot of the other possibilities, I did think Celiac was one of my better options.

My next step was to have an endoscopy to confirm the Celiac finding and a colonoscopy to check for signs of any other issues. I had those two procedures one month and one day after my symptoms started.

Once the Celiac Disease was confirmed and I started learning more about it, the pieces of the puzzle really started falling into place. Celiac Disease is an auto immune disorder in which gluten attacks the intestines. The intestines can get so damaged that you aren’t able to properly absorb nutrients. That was the reason for my anemia and why I felt so exhausted and lethargic all of the time.

People with Celiac say that once they have eliminated gluten from their diet, even a tiny amount can cause a severe reaction that can make them sick for weeks. My guess is that I’ve had Celiac Disease for a while. But when I eliminated bread and processed food from my diet, I also had eliminated gluten. Adding it back in is what caused such a severe reaction the past month.
I’m extremely thankful to know what is wrong and what I need to do to feel better. Going gluten free has been a big lifestyle change this past week. I have been reading every label of every ingredient to make sure I don’t accidentally ingest even a trace of gluten.

I think the hardest part about it is the realization that I don’t have a choice. This isn’t an eating plan that allows me to cheat on my birthday. This is a lifelong condition with serious consequences if I don’t stick to the program. Celiac Disease can cause anemia, osteoporosis, diabetes, MS and even cancer if left untreated.

One of the strangest twists in this mystery is that my husband and I both started having “symptoms” on the exact same day. He has been learning to cope with the loss of his vision in one eye. I’ve been learning to slow down as I deal with the anemia caused by Celiac. I can’t simply take iron pills and feel better because my body isn’t able to absorb the nutrients.

Both of our doctors have given us a nine-month outlook. It could take nine months of shots for his vision to improve. It could take nine months of gluten-free eating for my intestines to heal. We are both praying that we will beat those predictions. But until then, we are thankful to have answers.

And we are trying to enjoy summer at a much slower pace.