Dr. Don Duerksen
Gastroenterologist, St. Boniface Hospital
Executive Director, Canadian Celiac Association
Varied and unspecific symptoms lead to delayed diagnoses of celiac disease, causing illness and serious complications.
It’s estimated that 85% of people with celiac disease don’t even know they have it. In fact, the average Canadian with the disease goes 10 to 12 years before being diagnosed. This means years of living with symptoms ranging from bloating, diarrhea, and abdominal pain to weight loss, iron deficiency, and extreme fatigue.
Celiac disease is an autoimmune condition triggered by eating gluten, which is a protein found in wheat, barley, and rye. If you have celiac disease, eating gluten activates your immune system against your body’s own tissues and organs, destroying the lining of the small intestine.
Because the symptoms of celiac disease are so varied and can mimic other conditions, diagnosis is often delayed, says Dr. Don Duerksen, a gastroenterologist at St. Boniface Hospital in Winnipeg, MB. But undiagnosed celiac disease can affect the body’s ability to absorb nutrients, which can lead to anemia or weight loss, as well as slow growth in children. The inability to absorb calcium and vitamin D can lead to increased bone fractures or osteoporosis. Untreated celiac disease can also contribute to infertility, joint pain, neurological issues, dental problems, and a higher risk for certain forms of cancer.
If you think you have symptoms, talk to your doctor
“We want to make sure people understand it’s a serious disease that can have incredibly harmful effects if it goes undiagnosed,” says Melissa Secord, Executive Director of the Canadian Celiac Association. “If you think you’re having an adverse reaction to gluten, visit the Canadian Celiac Association to learn more, talk to your doctor, and get tested.”
Secord says that if you do have celiac, family members should also get tested. While about 1 in 100 Canadians have celiac disease, that number jumps to 1 in 10 if a close family member has the disease. Celiac disease can affect people of all ages and more commonly occurs in those with other autoimmune disorders, such as thyroid disease and type 1 diabetes.
Get tested before avoiding gluten
If celiac disease is suspected, your doctor can order a screening blood test. If the blood test is positive, diagnosis is made with a biopsy of the small intestine. Dr. Duerksen cautions that to make the diagnosis, you have to be eating gluten.
“Some people might be experiencing symptoms and just go off gluten,” says Dr. Duerksen. That’s not a good test to determine if you have celiac disease, as some people may feel better if they stop eating gluten. “They may have a gluten sensitivity that causes symptoms related to digestion. But they don’t have the intestinal injury or the same complication risks as someone with celiac disease,” he says. “Before you try avoiding gluten, get tested.”
Once diagnosed, going gluten free relieves symptoms and heals the small intestine. “We want people to be aware of the signs of celiac disease so it can lead to earlier diagnosis,” says Secord. “With a diagnosis, people can get the help they need and manage their diet. Once they do, they can lead healthy, fulfilling lives.”