Don’t have celiac disease? Eat your wheat
People who put themselves on a special diet without being diagnosed with celiac disease are kidding themselves if they think it doesn’t hurt to be on a gluten-free regime.
That’s the message from experts at the 2017 national conference for the Canadian Celiac Association, held Saturday in Edmonton.
One of the foremost authorities on celiac disease in North America, Dr. Sheila Crowe, told participants in the day-long event at the Chateau Louis Hotel and Conference Centre that those who self-diagnose as having celiac disease — a serious auto-immune disorder — run risks when they self-treat through diet.
“A recent study suggests avoiding gluten is associated with coronary artery disease,” says Crowe, a gastroenterologist and director of the University of California San Diego Celiac Disease Clinic and Centre.”… (a gluten-free diet) may not be as healthy as we think it is.”
Celiac disease is a hereditary, autoimmune intestinal disorder that affects children and adults. When a celiac eats gluten, found in wheat, rye and barley, the small intestine becomes inflamed and is damaged. A person with celiac disease has a hard time absorbing nutrients. Untreated, the disease can lead to anemia, osteoporosis, neurological complications and fertility problems.
Some say they feel physically better avoiding gluten, found in many bread and pasta products, or imagine that a gluten-free diet is somehow healthier. But those people may find they have a false negative test during a later diagnostic procedure, because gluten must be present in the system for a definitive diagnosis.
Those who self-diagnose rather then seek medical advice may hamper the ability of relatives to be identified as having the potential for celiac disease, because the disease has a genetic component. Also, some gluten-free diets and products lack key nutritional ingredients and are higher in fat and sugar. Gluten-free products can be expensive, imposing economic hardship for no good reason. Gluten-free diets are also difficult to follow.
“I think it’s really important to be diagnosed (by a professional),” says Crowe, whose husband has celiac disease and whose mother-in-law co-founded the Canadian Celiac Association 45 years ago.
Crowe refers to the condition as an “epidemic that started in this century,” and says its rise is linked to a diagnostic test that became available around the year 2000. But she also notes a study by the Mayo Clinic that found a marker for celiac disease could be seen four to five times more often in the blood of modern people than those at the time of the Second World War.
Crowe says there is more celiac disease because people eat more wheat products than ever before. Celiac disease used to affect one in 2,000 people. Now, one to two per cent of the population in countries where celiac disease is part of the gene pool suffer from the disease. Experts estimate that 80 to 90 per cent of those with the disease aren’t diagnosed because celiac disease is hard to read. It mimics other conditions, affects multiple organ systems, and looks different from patient to patient, says dietitian Shelley Case, who has celiac disease and is the author of Gluten Free: The Definitive Resource Guide.
“We call it a multi-system, multi-symptom, auto-immune disorder,” says Case, who attended the conference. “Some people have no gut symptoms and might present with a headache and anemia.”
Case says those who suspect they have celiac disease or gluten-sensitivity should seek a professional assessment, which can include a blood screening test, a biopsy of the small intestine and a genetic test.
She says one of the problems with a gluten-free diet if you are not officially diagnosed is that celiac disease is a “serious, lifelong disorder…and you have to be motivated.”
Those who aren’t certain they have the disease may not be vigilant with treatment, and that can lead to intestinal damage.
“People with celiac disease have to be on guard 24/7,” says Case.
The future holds hope for those with celiac disease. Crowe says a vaccine is possible for children with a genetic predisposition. There is also ongoing research on whether the disease can be prevented depending on when wheat is introduced into a child’s diet. Scientists are working on medications so people can eat gluten even with celiac disease.
“We’re not close, but there is a lot more development of these drugs. But it’s slow,” says Crowe.