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How we found out my daughter has celiac disease

Monica Beyer is a mom of four and has been writing professionally since 2000, when her first book, Baby Talk, was published. Her main area of interest is attachment parenting and all that goes with it, including breastfeeding, co-sleepin...

gluten- free for life

May is Celiac Awareness Month, and what better way to learn more than by hearing the story of a child’s illness and eventual diagnosis?
Lauren at the doctor

This is how a mom got to the bottom of her daughter’s problems, and what it was like to transition to a gluten-free diet.

My daughter Lauren was diagnosed with celiac disease in 2009, when she was 7 years old. It wasn’t the first thing her physician tested for and was deemed to be an unlikely answer, but her biopsy was positive and she’s been gluten-free ever since. This is her story.

An inkling of a problem

Lauren before her diagnosis

Lauren was born in 2002 and was a healthy baby, toddler and preschooler. She did, however, have a few incidents that were never explained when she was pretty small — small enough to cry and stay awake,  but not be able to tell us exactly what was wrong. She went to the emergency room with severe stomach pain a few times but we never got an answer as to what was ailing her. The only thing that kept me from seeking more answers at this time was the fact that the incidents were very isolated, seemed unrelated to an acute illness and didn’t continue to distress her.

This all changed, however, when she started kindergarten. The year started off fine, but within a month or so the school nurse called to inform me that Lauren had a stomach ache. Nothing serious, nothing severe, but bad enough to come home from school. No vomiting, no stool changes, just a vague, yet painful, stomach ache.

The school nurse never had any suggestions for us — her usual question was, “What do you want me to do?” After a few of these episodes, I began to suspect that there was a little more going on than what appeared on the surface. Yes, kids get stomach aches a lot, and often they are just that — stomach aches — but sometimes, there is a serious reason behind them.

Investigating the issue

The first doctor visit was entirely unproductive. He believed if it wasn't stress or nerves, that she may be lactose intolerant, so he suggested she go on a lactose-free diet and see if there was any improvement. We dutifully took her off dairy completely and imagined improvement, but after a month or so she continued to complain of stomach pain. So, back to the doctor we went.

This time, he seemed to take it a little more seriously. They took abdominal x-rays and did a slew of blood work. Test after test, however, came back normal. He put her on Zantac because he thought she may have acid reflux, so we tried it out for a few months — ultimately rejecting the notion since although it seemed to help at first, after a while we realized that it was just wishful thinking.

Finally, after months of trial, error and random medical tests that yielded nothing, her doctor suggested one more blood test — a celiac disease panel. I agreed even though I didn’t have a clue what celiac disease was. He didn’t sound optimistic that it was the answer, but I was hopeful that we’d arrived at an answer several weeks later when the results came back “mildly elevated.”

Getting a diagnosis

We were referred to a pediatric gastroenterologist about an hour away at a large children’s hospital called Children’s Mercy. By this time, Lauren was in the first grade and I was expecting my fourth child, who was due on Christmas Day. This doctor also didn’t sound like she expected her to come back positive for celiac disease, but she wanted to repeat the blood tests to rule it out. Lauren again had to endure a blood draw, but our wait this time was only a week or so.

When the call came, I was pretty cheerful — I really didn’t expect Lauren’s test to be positive, so I was quite surprised when the nurse on the phone told me her results were indeed indicative of celiac disease. The test was the tissue transglutaminase antibody, IgA class, also known as tTG IgA. With this lab, the result in non-celiac patients should be under 20 — hers was over 100. “Oh,” I said, with an air of intense sadness. I felt a lurch in my stomach — I closed my eyes.

I wanted a diagnosis, I wanted to know that there was something wrong, something that we could fix — but the news was still a blow. She let me know that while the blood test was a step in the right direction, we should still schedule a biopsy for a 100 percent confirmation. It was scheduled for the following week, when I was 9 months pregnant — a week before Christmas.

Acceptance

Once I got that phone call, I knew that she had celiac disease. I knew the biopsy would be positive, and it was — she had microscopic damage to the villi in her stomach and small intestine. This damage was from her body reacting to the gluten in foods and damaging itself — this is why celiac disease is known as an autoimmune disease. I wanted her to have the biopsy so we could have documented proof that she would always have on file, and would hopefully help with compliance as she gets older. It was an easy procedure — the worst part was the IV — and it was over in just a few minutes.

I began checking out what going gluten free meant, and at first I was definitely overwhelmed. All her favorite foods contained gluten — crackers, pizza, macaroni, Goldfish and Pringles. I wondered what she would eat. It took a lot of rethinking about food on everyone’s part to gradually begin to normalize a gluten-free diet for her. We substitute gluten-free items, like pasta and pizza crusts, when she wants something like that, but we also strive to emphasize foods that are naturally gluten-free, like fruits and vegetables.

My gluten-free girl

Lauren and Willow in Colorado

It has been a long three years, but honestly it also seems like she’s always been gluten-free. We’ve discovered all sorts of cool new recipes and every day there are more food labels declaring the contents to be devoid of gluten, and local and national chain restaurants are also getting into the act. There is even a bakery and restaurant in a nearby town whose entire menu and facility is gluten-free.

If you are headed down this road for your child or yourself, you are definitely not alone. There is more information out there about celiac disease and eliminating gluten than I even had at my fingertips three years ago, and you may find that one of your friends or family members has already gotten rid of it in their diet. It was sad to find out my child had an incurable autoimmune disease, but the good news is that it can be completely controlled with diet and any damage that has occurred will reverse, so she’s as good as new now — and I’m so glad we know.

Image credit: Monica Beyer

More about celiac disease

Gluten-free recipes
Help your gluten-free child fit in
Mom story: My kids have life-threatening food allergies

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