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Living Gluten Free

Our Celiac Disease Story

I never thought that growing my own food would one day help me PROTECT my family. Now that we know at least two of our family members are gluten intolerant, we’ve found that growing our own food is essential to preserving their safety (read my “Gardening and Food Allergies” page for more information).

Two years ago, a few months before Miss Muffet turned two years old, we finally discovered the cause of her gastrointestinal problems.

From a very early age, Miss M had issues. My husband frequently remarked that it was a good thing that we used cloth diapers, because if we hadn’t, we’d been spending a fortune in disposables. She was exclusively breastfed, so formula wasn’t the issue. Despite eliminating the most common food allergens from my diet (or so I thought), she never got any better. To make a very long story short, we went so far as to consult a pediatric gastroenterologist. We were finally told that we should stop worrying; sure she was small for her age, but so were her parents. She was obviously thriving, so we needed to just accept that some infant’s bowel habits were just… different.

Fast forward to Miss Muffet’s second year check up. I became concerned when I plotted out her growth myself and noted that she had dropped from 50th to BELOW the 1st percentile in weight! What was going on?

As you may know, I teach at a medical school. I was preparing a lecture about celiac disease, which is an autoimmune disease triggered by consuming gluten in some cereal grains, such as wheat, rye, and barley. As I often do, I began perusing the more recent medical literature to supplement the text. These newer articles explained how the medical community’s understanding of celiac disease is changing. Until a few years ago, it was believed that celiac disease was fairly rare, typified by the child with “failure to thrive” that essentially stops growing and is overtly sick.

Now we are begining to understand that gluten intolerance presents as a spectrum of symptoms, for some so mildly they aren’t aware of the food-body connection. Many physicians, even those freshly minted from medical schools, are unaware of the many different ways that an intolerance to gluten manifests itself. As a result, thousands of people are misdiagnosed with fibromyalgia, irritable bowel syndrome, arthritis… even depression. Of the estimated 1 in 100 people that have celiac disease, only about 5% are diagnosed.

As I was reading about the spectrum of symptoms that accompany an intolerance to gluten, many things were sounding eerily similar to my daughter’s symptoms. The real kicker was a photo of an 18 month-old with celiac disease, her abdomen distended and her legs skinny as rails.  I saw my daughter.

So I did what I tell my medical students NOT to do if you want to diagnose celiac disease: I took gluten out of my daughter’s diet. Within one week, her digestive issues disappeared. (To give you an idea of how bad they were, one of our babysitters threw up doing a diaper change). The bright red splotches on her forearm that she called “her paint” disappeared. Strangely, her gobs of gooey earwax that I would have to remove every night disappeared too.

Then Pa Hubbard took her to the grocery store, where the kind women at the deli gave her a cookie. “I got a cookie at the store, Mommy!” she exclaimed with delight upon her return home.

She immediately went to the bathroom.

“Sorry,” said Pa Hubbard sheepishly, “I didn’t realize there would be gluten in a cookie.” (Cut him a break… he doesn’t bake).

Miss Muffet’s “paint” on her arm returned. I cleaned out gobs of earwax.

I took gluten out of her diet once more and made an appointment with the pediatrician.

Miss M had seen the pediatrician about a month prior for an illness and had an official weight taken at that time. Since going gluten free, she had gained two pounds in just under a month. For some perspective as to what this meant, she had only gained four pounds over the previous year!

We were referred to a pediatric immunologist at Cincinnati Children’s Hospital.

I admit that I went to Cincinnati Children’s Hospital a little ashamed of myself. I knew I shouldn’t have taken Miss Muffet off gluten if we were going to confirm a celiac disease diagnosis. The gold standard for diagnosing the disease is intestinal biopsy; intestinal damage is reversed on a gluten free diet, so the hallmark features of the disease won’t be visible. Antibody testing can also support a diagnosis, but will also be negative if there is no gluten in someone’s system for the immune system to react against. But my daughter had been sick, and now she was thriving. I just couldn’t poison her intentionally.

The immunologist did some skin prick tests to rule out a wheat allergy, as opposed to gluten intolerance. He also ruled out a dairy allergy, as she had been unable to tolerate milk. He explained that we should try milk again in a few months; lactose intolerance is common in those with untreated celiac disease, as lactase can’t be produced adequately by damaged intestine (and yes, she tolerates dairy just fine now).

Then came the moment I had been dreading, when I would have to fess-up and reveal that she was still gluten-free. “Her antibody tests are negative for celiac disease,” he began. “Is she still on a gluten-free diet?”

“Yes,” I confessed. “I guess you want me to put her back on wheat so we can do that again, along with a biopsy.” I was preparing to explain to him that there would be no way I could do that to my daughter.

But I didn’t need to. “That is your decision,” he calmly stated. “I would expect any child under two years old to have a negative antibody test; she just can’t produce an antibody response similar to an adult. And she was gluten free for a month prior to testing, so that would additionally confound the test result. We could do a biopsy if you wish, but you’ll have to put wheat back into her diet for several months. We can make her sick again, confirm in the biopsy what we already know from experience, and we’ll be able to write in her medical record for the insurance companies that she has celiac disease. Or you can just keep doing what obviously works. So what do you want to do?”

I could have kissed him.

“Now tell me more about what you know of your husband’s family history…” (To be continued…)