About Celiac Disease

From Shlley Case, RD - dietary consultant, author of the national best-seller, Gluten-Free Diet: A Comprehensive Resource Guide and one of hte most widely recognized authorities on the gluten-free diet.

Celiac Disease (CD) is one of the most common inherited disorders, with an estimated prevalence rate of 1:100 to 1:200. Originally thought to be a rare disorder, a multi-center study revealed that 1:133 people in the US have CD. This translates into 3 million Americans with the disease, although it is estimated that 90-95% remain undiagnosed. Prevalence of CD in Canada is thought to be similar as in the US. A high prevalence of CD is also found in individuals with other disorders such as Type 1 diabetes, autoimmune thyroid disease and Down syndrome.

Celiac disease (CD) is an autoimmune disorder in which the villi of the small intestine are damaged by specific prolamins from the grains wheat, rye and barley (collectively called gluten). Symptoms of CD are highly variable, may occur at any age (including the elderly) and involve not only the gastrointestinal system but many other organ systems. Infants and young children can present with bloating, gas, diarrhea, weight loss, poor growth, irritability, dental enamel defects and/or anemia. In older children and adults, symptoms can vary from mild to severe. Some may present with only a few symptoms while others can have many different symptoms. These include anemia, nausea, reflux, bloating, gas, diarrhea or constipation (or both), lactose intolerance, weight loss (note that CD can also occur in obese individuals), mouth ulcers, extreme fatigue, bone and joint pain, easy bruising of the skin, menstrual irregularities, miscarriage, infertility in both women and men, migraines, depression, ataxia, seizures, neuropathy and elevated liver enzymes.

Another presentation of CD is the skin condition called dermatitis herpetiformis (DH) that is characterized by an intense burning, itchy rash that is symmetrically distributed. Initially, groups of small blisters are formed that soon erupt into small erosions. Areas affected can include the elbows, knees, back of the neck and scalp, upper back and buttocks. Most people with DH will also have varying degrees of small intestinal villous atrophy, although many will have no bowel complaints.

Untreated CD can result in nutritional deficiencies; osteoporosis; increased risk of intestinal cancers; reproductive complications such as infertility and miscarriage; and development of other autoimmune disorders. Because the symptoms of CD vary so widely in the nature and severity, especially among adults, misdiagnoses such as irritable bowel syndrome, lactose intolerance, fibromyalgia, chronic fatigue syndrome and ulcers are common. Also, diagnosis is often delayed for many years after symptoms appear. Studies by Columbia University in New York and the Canadian Celiac Association revealed that adults suffer from the disease for an average of 10-12 years before being correctly diagnosed.

There are specific serological tests that can be used to screen for CD, however the only definitive test for diagnosis is the small intestinal biopsy. Diagnosis for DH is a skin biopsy from unaffected skin adjacent to the blisters or erosions. In DH, an intestinal biopsy is not essential if the skin biopsy is positive. A gluten-free diet should never be started before the blood tests and biopsy are done as this can interfere with making an accurate diagnosis. A gluten-free diet should never be started before the blood tests and biopsy are done as this can interfere with making an accurate diagnosis.

The only treatment for CD is a strict gluten-free diet (GFD) for life. It is essential that individuals with CD be referred for an initial assessment, education and follow-up with a registered dietitian with expertise in CD and the GFD. Individuals should also be encouraged to join a local and/or national celiac group for ongoing support.

Gluten Defined
Gluten is the common name for storage proteins (prolamins) found in wheat, rye and barley. The specific names of the toxic prolamins are gliadin in wheat, secalin in rye and hordein in barley. All forms of wheat, rye and barley must strictly be avoided, including spelt, kamut, einkorn, emmer, faro, durum, couscous, semolina, bulgur and triticale. Barley malt, barley malt extract, barley malt flavour, brewer’s yeast, malt vinegar, as well as barley-based ale, beer and lager must also be avoided.

The avenin prolamin in oats was originally thought to trigger the same toxic reaction as wheat and other gluten- containing grains. New research in Europe and the US over the past 15 years has revealed that consumption of moderate amounts of oats is safe for the majority of children and adults with celiac disease. Most of these studies used pure, uncontaminated oats, but it should be noted that a very small number of individuals with celiac disease may not even tolerate pure oats. The mechanism causing this intolerance has yet to be established.

Based on this new research, a growing number of celiac organizations and health professionals around the world now allow consumption of moderate amounts of pure, uncontaminated oat products in diet. An extensive technical review on the safety of oats is published on the Health Canada website.

Unfortunately the majority of commercial oats products on the market are cross contaminated with wheat, barley or rye which occurs during harvesting, transportation, storage, milling, processing and packaging. The good news is that there are companies in the US, Canada and Europe who produce pure, uncontaminated specialty oat products.

Sources of Gluten
Gluten is found in a wide variety of foods such as breads and other baked products, cereals, pastas, soups, sauces such as soy sauce which is often made from wheat and soy, seasonings, salad dressings, snack foods, prepared meats (e.g., deli meats, hot dogs, hamburger patties, imitation seafood), beer, flavoured coffees and teas, some candies (e.g., licorice) and chocolate bars, as well as some nutrition supplements and medications.