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). Here are their stories:

 

Miss Muffet’s Story

Miss Muffet has always loved to get dirty in the garden! Here she is a not quite a year before her diagnosis.

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 being 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…”

 

Pa Hubbard’s Story

Pa Hubbard in 2007, our first year gardening on our tiny lot.

Very soon after the “cookie episode,” I explained the genetic basis for celiac disease to Pa Hubbard. Susceptibility to celiac disease, similar to other autoimmune diseases, is inherited. “Must have been your family’s inferior genetics,” he announced.

“I’m not the one with a colonoscopy scheduled for next month,” I calmly replied.

Pa Hubbard had also been plagued with digestive issues his entire life, which I suppose made us a little more accepting of Miss Muffet’s situation. It wasn’t unusual for him to sit in the bathroom for a couple of hours each morning; that was part of the reason he was always such an early riser (and also a huge contributor to how well-read he is). I’ll be honest, for a long time in our marriage I used to question why it took him so long. Just what was he DOING in there each morning?

In the prior few months, about to turn 40, he had resolved to try and nail it down. More fiber? Nope. Probiotics? Wrong again. He finally had seen a gastroenterologist, who was hoping a colonoscopy might reveal the problem.

I suggested he eliminate gluten for a bit, just to see if it made a difference for him. He looked incredulously at me. “Can’t I take a pill?”

The first few days of gluten-free living was hard on Pa Hubbard. “This stinks,” he said grumpily. “I want bread. How do people DO THIS?!”

After a week and a half, Pa Hubbard changed his tune completely. “I can’t believe how GREAT I feel! I can’t believe that I’ve lived with this my entire life! I’m 40 years old and I feel REBORN!” He was telling everyone, and I mean EVERYONE, about his experience. He was a gluten free evangelist.

In addition to his digestive issues clearing, Pa also felt more energetic than ever before. A few weeks after eliminating gluten, he put Miss Muffet and Bo Peep in the jogging stroller and ran 5 miles around our city. Joint pain that he had experienced most of his life began to ease. The year prior he had gone so far as to have his bladder scoped for a urinary issue that had been bothering him; the scope was completely normal, and the physician suggested his problem was likely “psychological.” It hasn’t bothered him since being gluten-free.

Staying gluten free hasn’t been easy for Pa. He has to travel quite a bit for his job, and there are many times when he has been “glutened” in restaurants. This includes expensive restaurants with otherwise knowledgeable chefs, and restaurants that cater to those on a “gluten free diet.” And it isn’t nice for him or me when he gets glutened. He gets cranky, irritable, and depressed, as if his brain has a chemical imbalance. There is a name for it among the gluten intolerant community: “Celiac Rage.”

So how does Pa feel about “doing this” after two years? Does he miss my homemade baguettes… his mother’s chicken pot pie… Chinese takeout? As he said to a friend the other day, “When something makes you that sick, you don’t miss eating it all.”

 

Bo Peep’s Story

Little Bo Peep

The verdict is still out on little Bo Peep. To minimize the risk of cross-contamination, we all eat gluten free at home (but I get my “fix” when I’m at work). Bo Peep was still nursing exclusively when we did have gluten in our home, but she never had a reaction to it in my breastmilk the way that Miss Muffet did. I’m not in a hurry to find out, especially since we all eat gluten free anyway. Time will tell.

 

A Final Word

Our story is not unique. I’ve met a number of folks with celiac disease/gluten intolerance in the past two years, and they all have similar stories: living with disease symptoms for YEARS before getting a diagnosis. Like us, gluten intolerance was not considered by their family physician or specialist. Many of them just happen to BE physicians, or their immediate family (just because those are the circles my husband and I happen to be in with our jobs). That’s pretty incredible to me, and is illustrative of just how tricky identifying celiac disease can be.

One developed debilitating joint pain over several years, sought the help of numerous specialists, and ultimately lost her medical practice (and subsequently her home).  An acupuncturist suggested she go gluten free; her joint swelling and pain resolved, and she is now able to practice medicine again.

Another retired physician, now a medical school dean, didn’t realize he was gluten intolerant until hearing my husband’s story. His joint pain and “irritable bowel” resolved once gluten was eliminated from his diet (and he lost 40 pounds to boot).

The wife of a medical pathologist had a number of vague and unexplainable symptoms that essentially disabled her. After seeing numerous specialists and desperate for an answer, she sought a naturopath who recommended she try eliminating gluten. She was able to quit all of the numerous medications she had been taking over the past 10 years prior.

I hear stories like this all of the time. I know of only ONE person whose gluten intolerance was first suggested by a physician.

Does that mean I distrust physicians? No. The medical community’s knowledge about celiac disease/gluten intolerance continues to grow and evolve. It always takes time for new findings to spread throughout ANY field.

Does that mean I recommend taking matters into your own hands if you suspect you are gluten intolerant? Please don’t. I know, I know… it sounds all “do as I say, and not as I do,” but there are many reasons to consult a physician first. For more information, I highly recommend the materials and videos available at the University of Maryland Center for Celiac Research and the Celiac Disease Foundation.