Willow Wight had osteoporosis. Nancy Adrian suffered from intestinal distress. Maria MacKinnon struggled with anemia and fatigue. I had irritable bowel syndrome and irregular ovulation.
These are very different medical issues, but in each of our cases was the result of one thing: celiac disease. It’s an immune disorder 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: 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 133 Americans has 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 Mohsin Rashid, MD, a pediatric gastroenterologist at Dalhousie University. Doctors used to think that typical celiac 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 Dr. Rashid.
Celiac and Its Serious Consequences
Celiac disease may be the underlying cause in a number of conditions, including:
- Irritable bowel syndrome
- Intestinal lymphoma
- Skin disorders
- Thyroid disorders
- Short stature
- Type 1 diabetes
- Numbness and tingling
- 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 a 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.
Living with Celiac Disease (And Not Knowing It)
I was a classic celiac 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 stomachaches 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. I began having regular periods for the first time. 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, which is something celiac experts strongly caution 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.
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 Celiac Symptoms
Willow Wight, Nancy Adrian, and Maria MacKinnon all had intestinal biopsies after years of enduring 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 that the relationship between celiac disease and associated conditions such as osteoporosis was becoming clearer. Suddenly, her life history of subtle health problems made sense. Finally, at age 63, she learned the true diagnosis. Since going gluten-free, Wright 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.”
Summer 2009 issue of Best Health magazine