Janet Dalziel used to come home from work so exhausted, she would collapse on the couch before 8 p.m. She blamed the fatigue on her job as a vice-principal at a downtown Toronto high school, where she managed 1,100 raucous students. But lethargy wasn't her only problem. She was also losing her night vision.
When she finally went to the doctor, he made a surprising discovery. She had celiac disease, an autoimmune disorder that attacks the small intestine. Once relatively rare, the prevalence of celiac has increased fourfold in the past 50 years, though the disease remains difficult to diagnose.
As health experts puzzle over the reason for the increase, food manufacturers are starting to cater to this group, who must follow a gluten-free diet. Last week, Betty Crocker introduced gluten-free brownie, cake and cookie mixes.
Ms. Dalziel is grateful for the new interest: "For years we have joked that the packaging gluten-free products came in tasted better than the products themselves," she laughs. Many celiacs are "happy" once they finally are diagnosed because it solves the mystery of their many troubling ailments. "Feeling terrible had started to feel normal. The disease is insidious," she says.
The disorder is triggered by an intolerance of gluten, a protein found in wheat, rye and barley.
Celiacs usually have abdominal pain, bloating and gas. But celiac can also be a clever chameleon; Ms. Dalziel, who says she has an iron-clad stomach, had no gastrointestinal symptoms.
The estimated 4.5 times increase in prevalence is based on the results of a new study conducted by the Mayo Clinic in Rochester, Minn. A team of researchers tested blood samples gathered at Warren Air Force Base in Wyoming from 1948 to 1954 for the antibody that celiacs produce in reaction to gluten.
They compared the results with blood samples recently collected from people living in Olmsted County in Minnesota. Based on their findings, as many as one in every 100 people may have it - about the same prevalence as rheumatoid arthritis.
However, according to health professionals, only about one-third of those with celiac have been diagnosed.
Those with unrecognized celiac are nearly four times more likely to die prematurely than the general population. The disease, which damages the small intestine and makes it more difficult to absorb nutrients from food, often leads to a host of secondary illnesses. Celiacs are at an increased risk of lymphoma, osteoporosis, and iron and vitamin A deficiencies (that explains Ms. Dalziel's inability to see at night). Other symptoms include anemia, weight loss and depression.
Doctors should consider screening for the disease the way they do for cholesterol and blood pressure, says Joseph Murray, a gastroenterologist and lead author of the Mayo study. There is a simple blood test available in Canadian drugstores that shows whether the body is producing higher than normal levels of certain auto-antibodies - proteins that react against the body's own cells or tissues. But doctors say the diagnosis should be confirmed with a biopsy of the small intestine.
The reason for the alarming increase is less clear.
"Something has changed in our environment to make it much more common," Dr. Murray says. "Our genetics don't change that fast. The issue of what is it in the environment is entirely speculative. But the leading theory is the so-called hygiene theory, that our cleaner environment means our immune system cannot do the job it was trained to do." A study conducted in Finland supports this hypothesis.
Since gluten is the trigger for celiac, another theory centres on changes over time in the way wheat is processed.
Researchers also don't know why the disorder is most prevalent in countries such as Finland, Sweden and Ireland, and uncommon among people of African-Caribbean, Japanese and Chinese background.
"It's the ultimate conundrum," Dr. Murray says. "Western civilization is based on wheat as an effective and reliable food source but now genetically 1 per cent of people cannot tolerate wheat."
Though awareness of celiac disease is growing in Canada and the United States, convincing people with symptoms to get a diagnosis remains a challenge. Many self-diagnose incorrectly or put themselves on a gluten-free diet and then get the blood test, which can result in a false negative.
While celiac disease is genetic, the onset is believed to be triggered by stress, pregnancy, surgery or other life-changing events. If people are diagnosed in childhood or early adulthood and treat the condition, their health will improve and their life expectancy return to normal. A gluten-free diet is the primary treatment, though drug therapies are also being developed, with two clinical trials under way.
Eliminating gluten isn't as easy as it sounds. It isn't just found in staples such as bread, pasta, cookies, cakes and cereals, but also in beer, soy sauce, toppings for meat and fish, ice cream, and many salad dressings.
Even so, in recent years, the variety and availability of gluten-free products has increased, not just in health food stores but in grocery chains such as Loblaws and Bulk Barn. Celiacs can find inspiration in gluten-free cooking classes, on blogs and in books such as Gluten-Free Girl , a memoir by Shauna James Ahern. Even some non-celiacs now shun gluten, saying they feel healthier.
In Toronto, restaurants such as Riz offer gluten-free menus, including items such as rice-based soy sauce and rice-paper spring rolls (among other dishes); so does A Kettle of Fish in Vancouver and Spice of Life in St. John's. Pizza Pizza has a gluten-free dough, and Dairy Queen offers gluten-free ice cream treats. Last week, General Mills rolled out gluten-free mixes for Betty Crocker cookies, brownies and cakes - the first offering from a mainstream brand in the cake-mix aisle. The company already sells a gluten-free version of its Chex cereal.
Some still complain about the price and taste of some of these alternatives - which can cost as much as three times more than regular products, though the extra cost is tax-deductible.
"The gluten-free food industry is still in its infancy in Canada," says a Toronto woman in her 40s who has been on a gluten-free diet for a year. "Most restaurants are unaware of the condition, or will offer you a meal without, like eggs without toast, rather than with a gluten-free alternative."
A devoted foodie, Ms. Dalziel, 61, went through a stage of mourning after her diagnosis eight years ago. She missed pizza and beer the way people grieve a beloved lost pet. "I had to learn a whole new way of shopping," she recalls. "Read every label, go to several stores to find your basics. It takes twice as long."
She eventually joined the Canadian Celiac Association, an advocacy group of which she is now the president. Thanks to a strict gluten-free diet, her small intestine has healed. In fact, she is now so sensitive to gluten that if she accidentally eats a crumb from a contaminated bread knife or toaster, within hours she is violently ill. (Dr. Murray says that is because her body is no longer accustomed to compensating for the gluten.)
While Ms. Dalziel longs for the day she can order more than just a coffee at Tim Hortons, for now she relies on her bible, Gluten-Free Baking Classics by Annalise G. Roberts. The brownies and lemon layer cake are so delicious "regular people gobble them up too," she says, laughing.
Know the symptoms
Over time, celiac disease damages parts of the small intestine known as villi. These tiny, finger-like projections aid in the absorption of nutrients by increasing the surface area of the intestine. Some celiac patients suffer from nutrient deficiencies that may explain why they are at higher risk of developing a host of ailments including infertility, osteoporosis, certain cancers and other conditions that can shorten life span. Other symptoms include general gastrointestinal complaints, skin rashes, mouth sores, defective enamel formation, weight loss, unexplained infertility, difficulty with balance and even early dementia.