New drug offers hope to Celiac sufferers

Even if Janet Smith could give her 13-year-old daughter, Heather, a drug that would let her eat gluten, she wouldn’t necessarily do it.

The Brooklin mom has been monitoring everything Heather eats since she was an infant, making her special foods and keeping her on a strict, gluten-free diet. It hasn’t been easy — the slightest trace of gluten can make Heather sick for weeks — but Smith isn’t convinced that a drug would be better.

“We’ve followed this path for so many years,” she says. “She’s never eaten regular foods, so for her to take a pill and be able to eat what we eat would be a total adjustment for her.”

Heather was diagnosed with celiac disease when she was 14 months old. Eating gluten, a protein found in wheat and other grains, damages the lining of her intestinal tract and suppresses her body’s absorption of vitamins and minerals such as iron, calcium and vitamin D.

Many doctors mistakenly think the disease is rare, says Shelley Case, a dietitian on the board of the Celiac Disease Foundation and the Canadian Celiac Association, and the author of Gluten Free Diet (Case Nutrition, 2010). The reality is that an estimated one in 133 people are affected, and most don’t even know it.

“If I could pass along one message to readers, it’s that around 95 per cent of the people who have celiac disease are not diagnosed,” says Janet Dalziel, president of the Canadian Celiac Association and herself a sufferer of the disease.

There is no cure for celiac disease, nor any treatment beyond removing all traces of gluten from your diet. But a new drug could be a partial solution.

Called Larazotide Acetate, the drug is being tested in 11 cities — including by University of Alberta researchers in Edmonton, the only Canadian city involved in the study. A fourth clinical trial starts later this year, but researchers say the results look promising and the drug could be available by 2012.

The drug essentially blocks gluten from being absorbed into the intestines and causing damage, which would make it possible for celiacs to eat bread, cake, pasta and other foods containing gluten without any ill effects.

So, why isn’t Smith and other sufferers of celiac disease on board?

“Any time someone mentions a drug, the next questions are going to be ‘How much is it going to cost?’ and ‘What are the side effects?’” says Case. “Patients do so well on the gluten-free diet that they often aren’t interested in trying anything else.”

“Heather’s still so reactive,” says her mom, “that I don’t know if she’d be comfortable with a medication.”

Heather had just started eating solid food as an infant when she started vomiting eight or nine times a day and had constant diarrhea. A pediatrician misdiagnosed her with stomach flu. “She was 10 pounds at birth and, at 18 months, she was only 15 pounds,” says Smith. “She had very skinny arms and legs, but then she had this absolutely enormous stomach. I couldn’t even keep pants on her. She had to wear little dresses because the pants wouldn’t stay up over her diaper.”

So Smith sought a second opinion — a pediatrician who, by coincidence, was also a gastroenterologist. “I said, ‘Could you just look at her without any clothes on?’ ” recalls Smith. The second doctor diagnosed Heather right away; a blood test and biopsy confirmed the diagnosis.

Adults might have an easier time adjusting to a medication, suggests Smith, who also volunteers with the Canadian Celiac Association and runs the Toronto chapter of a support group called R.O.C.K. (Raising Our Celiac Kids).

Now that Heather is a teenager, Smith can already foresee new challenges. “When you’re a kid, it’s cool to be different,” she says. “Now, we’re entering a phase where it’s embarrassing for her. She doesn’t want to have to eat special food. She wants to be like her friends.”

Dalziel, too, is hesitant about medication. “A lot of us wouldn’t consider it as a replacement for the diet,” she says.

Instead, Dalziel might consider using it to safeguard against accidental exposure or on special occasions — say, once a year, so she could eat ordinary birthday cake. “Some people are so afraid of getting ill that they probably wouldn’t risk it. They’re so adapted to the gluten-free diet that it’s like religion for them.”

Her own diagnosis, when she was in her mid-50s, came as a shock — she’d never heard of celiac disease and had gone to her doctor complaining about chronic fatigue.

“For years, I blamed it on my stressful job, as the vice-principal of a secondary school,” says Dalziel, who calls it a miracle that her doctor thought of getting her tested for malabsorption of nutrients, a consequence of celiac disease.

Her quick diagnosis isn’t the norm — most sufferers spend years searching for an answer to symptoms that can range from constipation and diarrhea to migraines and joint pain, or from low iron and abnormal weight changes to night blindness and infertility. Research shows that the average lag time between when symptoms first appear and when celiac disease is diagnosed is 11.7 years.

In fact, Smith might soon be on a gluten-free diet herself. Although she’s never had symptoms, she was tested 13 years ago when her daughter was diagnosed, and the results came back false-positive. Her doctor recently suggested she get tested again. This time, her results came back abnormal.

“Here I am, a totally healthy person,” says Smith. “I feel good all the time, but inside, that’s the problem — you can’t see what’s happening to your small intestine.”

But she is thankful for the diagnosis. “It’s so easily treated. Once you get on the gluten-free diet, you heal and you’re as good as new.”

Do you have celiac?

Could you be among the 95 per cent of undiagnosed cases of celiac disease? With the disease affecting one in every 133 people, it’s something to think about.

There’s no telling how the disease will affect you. Symptoms vary wildly from patient to patient, ranging from constipation and diarrhea to fatigue and migraines or from low iron and joint pain to night blindness and infertility.

People are often diagnosed with anemia or osteoporosis before they are diagnosed with celiac disease, because the disease sabotages the body’s ability to absorb nutrients.

Celiac disease can be inherited, so if a family member has the disease, or a related illness such as Type I diabetes, anemia or osteoporosis, mention it to your doctor.