Wednesday, July 16, 2008

Celiac disease: an elusive 'iceberg'

Fatigue, weakness, joint pain and migraines are frequently overlooked as symptoms of the disorder

Although as many as 300,000 Canadians suffer from celiac disease, many of them don't know it.
Celiac disease, a lifelong, genetically based disorder, occurs when gluten - a protein found in wheat, rye and barley - triggers an abnormal immune response that damages the lining of the small intestine interfering with the absorption of nutrients. Often the condition goes undiagnosed.

Experts commonly refer to it as an "iceberg" disease. Visible at the tip are individuals whose symptoms include diarrhea, abdominal pain, weight loss and, in children, delayed growth. The rest of the iceberg consists of those with more subtle symptoms, such as bloating or excess gas. Although these may go unrecognized as signs of celiac disease, the damage continues.
While most people think celiac disease afflicts mainly children, it can occur at any age. In fact, two-thirds of those diagnosed are adults. Later in life, the disease can be triggered by pregnancy, surgery, gastrointestinal infection or severe emotional stress.

According to a 2007 survey of the Canadian Celiac Association's more than 5,000 members, the average time it took to get diagnosed was 12 years. Many respondents had consulted three or more doctors before getting their diagnosis.

While stomach pain, abdominal distention and diarrhea are considered the classic symptoms of celiac disease, in adults they're often not present. Constipation and bloating may be the only outward signs. Symptoms such as fatigue, weakness, joint pain and migraines - ones typically not recognized as gut-related - are commonly reported, and the diagnosis is often anemia, stress, irritable bowel syndrome or chronic fatigue syndrome.

If left untreated, celiac disease increases the risk of osteoporosis (because of poor absorption of calcium and vitamin D), infertility, certain digestive tract cancers and other autoimmune disorders such as Type 1 diabetes and thyroid disease.

Screening tests that measure the level of antibodies in the blood are available. (People with celiac disease have higher than normal levels of antibodies to gluten.)

Health Canada recently approved the Biocard Celiac Test Kit, an at-home test that measures gluten antibodies from a fingertip blood sample. The Biocard is currently available in British Columbia and is expected to be available for $50 in pharmacies across the country by the end of this year.

A blood test, however, is only the first step in diagnosing celiac disease; it's used to detect people who are likely to have the condition. Confirming a diagnosis requires a small bowel biopsy in which an endoscope is passed through the mouth into the stomach and upper intestine so that the lining can be examined and a biopsy taken.

The only treatment for celiac disease is a gluten-free diet for life. That means eliminating all foods and food ingredients made from wheat, rye and barley. Included in the wheat family are spelt, kamut, semolina, durum, einkorn and faro. The main sources of gluten are breads, cereals, crackers and pastas, but it's also found in luncheon meats, yogurt, seasonings, salad dressings, sauces, marinades, soy sauce, soups and beer.

Even if you think you are following a gluten-free diet, you may be unknowingly consuming gluten as a hidden ingredient in food products, medications or vitamin supplements. Ingredients to question or avoid include graham flour, malt, dextrin, modified food starch, hydrolyzed vegetable protein, MSG, emulsifiers, stabilizers, caramel colour and natural flavour.

Oats, previously on the list of gluten-containing foods to avoid, have now been given the green light for people with celiac disease. The Canadian Celiac Association maintains that eating pure, uncontaminated oats - up to ¾ cup dry oats a day for adults and ¼ cup for children - is safe.
The problem is that oats may become contaminated with other gluten-containing grains during processing. Pure, uncontaminated oats are trademarked "Pavena" to ensure accurate identification. Still, a small number of people may not be able to tolerate oats and should follow up with their doctor when adding them to a gluten-free diet.

(People with untreated celiac disease may also have difficulty digesting lactose in milk products. That problem usually disappears when gluten is removed from the diet, allowing the gut to heal.)
Today, it's getting easier to follow a gluten-free diet with the influx of products in supermarkets and natural food stores. Manufacturers of gluten-free products include El Peto, Glutino, Kinnikinnick, Enjoy Life, Kaybee, Rizopia and Tinkyada. And it's important to consult with a registered dietitian who can advise you on gluten-free alternatives and the need for vitamin and mineral supplements.

If you suspect you have celiac disease, don't put yourself on a gluten-free diet until you are properly diagnosed. If you do have the disease, the Canadian Celiac Association ( can provide more information and support.

July 9, 2008. Leslie Beck, a Toronto-based dietitian at the Medcan Clinic, is on CTV's Canada AM every Wednesday. Her website is

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