Plagued with digestive problems, diarrhea, and weight loss, Sue Newell trooped from doctor to doctor.
"I felt like I was falling off a cliff," she says, recalling the frustration she went through 13 years ago to find out what was wrong. It was celiac disease, or CD, a life-altering and sometimes life-threatening condition in which the presence of gluten from wheat, rye or barley triggers an attack on the body's immune system, causing various symptoms and damaging the gut.
Newell, who was diagnosed at age 33, is now executive vice-president of the Canadian Celiac Association (CCA), an organization whose many goals include advocating for research dollars and better food labelling, raising awareness and educating patients.
The Kitchener, Ont., native and her colleagues will be increasingly busy, thanks to the results of a recent study by the Mayo Clinic which shows CD is over four times more common today than 50 years ago. Nobody knows why. The environment has been blamed, so has hygiene -- less dirt to deal with could mean our immune system attacks itself rather than the bugs around us.
CD, which now affects one in 100 people, used to be considered a pediatric illness -- affected babies looked like they were starving because they couldn't absorb nutrients. But according to the CCA, more people in their 40s and older are now being diagnosed (Newell's mother was 63.)
Seeing five or more doctors is not uncommon before a final diagnosis is made.
One study suggests that for every person who has been diagnosed, there are 30 who have not. Part of the CCA's campaign is to educate doctors.
"In the past, physicians weren't even looking for it," says Shelley Case of Regina, a dietitian and author of The Gluten-Free Diet, who explains that CD symptoms can be different for everybody.
"A person might present with anemia because of non-absorption of nutrients in the small intestine, or osteoporosis because of non-absorption of vitamin D.
"Gluten may cause an autoimmune reaction in other tissues so the thyroid gland may be affected, or there may be migraine headaches or joint and bone pain. Half of the CD adults are not presenting with textbook symptoms of diarrhea, weight loss and gas."
Stress, surgery or a virus can turn on the celiac gene, which is why symptoms may not appear until after decades of successfully eating gluten. (Newell recalls that her symptoms appeared "suddenly" but while she was in a particularly stressful job.)
CD is detected by a blood test (90% effective), but only an endoscopic biopsy of the stomach lining can confirm the amount of damage in the gut.
"Should we screen everybody?" asks Case. "Maybe everybody with symptoms, or people whose first- degree relatives have CD. If found early, we can pick up on the nasty repercussions."
Treatment includes following a gluten-free diet, which sounds easy but isn't. "Wheat is the staple of the North American diet," says Case. "Gluten isn't just in bread and pasta, it can be hidden. Salad dressing, for example, may contain wheat protein."
Newell admits that the new way of eating is a huge learning curve. But food manufacturers are beginning to appeal to the expanding CD market, which not only includes people with confirmed CD, but also those who just believe a gluten-free diet is healthier.
"Today I feel more normal when shopping," says Newell of the non-gluten choices in her supermarket. "I can buy my bread like you do and the rice pastas are so much better than they used to be. I can shop locally -- though I still drive across town for corn tortillas."
