Willow Wight of Ottawa had osteoporosis. Nancy Adrian of Victoria suffered from intestinal distress. Maria MacKinnon of Halifax struggled with anemia and fatigue. I had irritable bowel syndrome and irregular ovulation.
These are very different medical issues, but in our cases, each was the result of one thing: celiac disease. It’s an immune disorder in genetically susceptible individuals that is triggered by eating gluten, a protein present in wheat, rye and barley. Unbeknownst to the three of us, every time we ate pasta, pizza, bread, cakes, cookies, cereals and other flour-based products, we were essentially ingesting an allergen that was damaging the lining of our small intestine and playing havoc with our health.
Celiac disease is a common problem
Although it’s thought that celiac disease has probably been around for thousands of years’ever since humans began cultivating and eating cereals’it is only in the past decade that celiac experts have begun to realize that it is not, as previously thought, a rare disorder. In fact, the accepted statistic is that almost one in 100 Canadians have the disease, and suffer a wide range of confounding symptoms. And in most cases, neither they nor their doctors know that the underlying cause is in fact celiac disease, and that the solution simply requires cutting gluten from the patient’s diet.
‘Celiac disease is very common, much more common than we previously realized,’ notes Dr. Mohsin Rashid, a pediatric gastroenterologist at Dalhousie University, and medical advisor to the Canadian Celiac Association. In the past, the medical profession thought the typical symptoms were chronic diarrhea and bloating, particularly if they appeared in childhood. ‘But now, more and more people are presenting with atypical symptoms like anemia and fatigue, leading to a delay in diagnosis,’ says Rashid.
The reason for other health problems
Celiac disease may be the underlying cause in a number of conditions, including osteoporosis, irritable bowel syndrome, infertility, intestinal lymphoma, skin disorders, depression, thyroid disorders, short stature, type 1 diabetes, numbness and tingling, the autoimmune disorder lupus and an arthritis-related condition called Sjögren’s syndrome. People who have a relative with celiac disease may be silently incurring intestinal damage by eating products containing gluten and show no symptoms at all’but it could emerge later in life as severe health problems, particularly malignant intestinal lymphoma.
Why celiac disease is underdiagnosed
Rashid was one of the authors of a 2002 Canadian survey that found many individuals who were eventually diagnosed with celiac disease had seen several physicians, including both family doctors and specialists, over many years for a wide variety of health complaints before a diagnosis of celiac disease was finally made. The average time to diagnosis was 11.7 years.
‘We concluded that awareness of celiac disease is poor among physicians; otherwise, the delay in diagnosis should not have been this long,’ says Rashid, who notes that most physicians in Canada have been taught that celiac disease appears primarily in young children with bloating, diarrhea and failure to grow.
What tests are available
Celiac disease was once thought to be very rare in North America. But with the recent advent of increasingly sensitive’and easy-to-administer’blood tests, especially one called tissue transglutaminase IgA antibody test (TTG), the true rate (almost one in 100 people) has been found. The test simply requires a small amount of blood. A positive blood test is then confirmed by intestinal biopsy. The Health Canada-approved Biocard Celiac Test, which has been on the market since March 2008, is an over-the-counter take-home celiac disease blood test. It is available in pharmacies throughout Canada for about $50.
The hidden disease
‘The damage from celiac [disease] can be very diverse’attacking the gut, the joints, the skin, the nerves or various organ systems, so early diagnosis is important,’ says Dr. Alessio Fasano. One of the world’s leading experts in celiac disease, Fasano is director of the University of Maryland Center for Celiac Research, which has been pivotal in showing how common the disease really is. Fasano led a 2003 U.S. multicentre study that found celiac disease occurs in one in 133 otherwise-healthy human subjects. In a 2007 follow-up study, his team examined doctors’ medical files in 25 North American cities, giving antibody tests to those who showed any of the symptoms now known to be associated with celiac disease. The number jumped to one in 50 of the patients tested. Fasano estimates that some three million people in the United States have celiac disease and don’t yet know it.
Living with celiac disease
I was a classic case. When I was an infant in 1959 and my mother introduced wheat into my diet, I developed the typical childhood symptoms of chronic diarrhea and bloating. There were no confirming tests back then but because I showed the defining symptoms, I was diagnosed as having celiac disease and for more than seven years I ate no wheat, rye or barley. By age 10, it appeared I had grown out of it and I resumed a normal diet, with no apparent gastrointestinal symptoms.
But subtle health problems plagued me for the next 20 years, including irregular periods, frequent stomach aches and a diagnosis of irritable bowel syndrome at age 30. In my mid-30s, reflecting on my childhood diagnosis, I stopped eating wheat, rye and barley’and within three months, not only had all my symptoms disappeared, but I felt the healthiest I had ever felt in my life, and for the first time since menarche, I began having regular periods. I have now eaten a gluten-free diet for almost 15 years.
I stopped eating wheat, rye and barley without having my diagnosis medically confirmed. That’s something Fasano and Rashid caution patients against: They shouldn’t assume they have celiac disease and go
gluten-free without first having it diagnosed by blood test and intestinal biopsy. The gluten-free diet (the only treatment available) can be challenging to maintain and can be expensive, so only those diagnosed with celiac disease should avoid wheat, rye and barley. As well, the Canada Revenue Agency gives a tax deduction to those with a medically certified case of celiac disease because of its increased expense.
I don’t ‘officially’ qualify as having celiac disease, but because I feel so much better, I have been unwilling to risk ill health again by going back to eating a diet with gluten for six to 12 months, which is what it would take to have my tests show a positive diagnosis. My family doctor and gastroenterologist support this decision.
Making sense of the symptoms
Willow Wight, Nancy Adrian and Maria MacKinnon all had intestinal biopsies after years of various health problems. Always thin, Wight was diagnosed with osteoporosis at age 52. She didn’t respond to any bone-building drugs. In 2002, a decade later, she attended a celiac conference with her husband (ironically, Wight’s husband had had celiac disease for more than two decades), and learned of new research into celiac disease as an autoimmune disease. The relationship between celiac disease and associated conditions such as osteoporosis was becoming clearer. The penny dropped and her life history of subtle health problems made sense. Having never had any gastrointestinal symptoms, she had never considered celiac disease. But now, with the autoimmune connection, it was worth having the new screening blood test. She had to convince her doctor to order the test’even spelling out its name. Finally, at age 63, she learned the true diagnosis. Since going gluten-free, she has seen her bone density improve and her general health rebound.
MacKinnon endured years of iron deficiency anemia, weight loss, irregular menstrual cycles and extreme fatigue before she was finally tested in 1994 and was found to be positive. As for Adrian, it was during a very stressful period of her life when suddenly the more typical symptoms of bloating, chronic diarrhea and weight loss spurred her biopsy. Both women have had a complete return to health since they have gone gluten-free. Says Adrian, now 49: ‘The diet can be hard at first, but you get used to it. I have never felt so good in my life.’
This article was originally titled "The gluten connection," in the Summer 2009 issue of Best Health. Subscribe today to get the full Best Health experience’and never miss an issue!’and make sure to check out what’s new in the latest issue of Best Health.