TORONTO (Reuters) - Two years ago, Shauna James Ahern’s doctor told her she had a chronic disease. The author felt something unusual for someone who would soon have to completely alter her eating habits. She felt liberated.
The 41-year-old was diagnosed with celiac disease, a genetic auto-immune disorder. People with the disease have an intolerance for gluten -- a protein in wheat, rye and barley that is also found in spelt, durum seminolina, kamut, couscous, triticale and many processed foods. Ingredients like modified starches and MSG, as well as condiments like soy sauce, can all contain gluten.
When celiacs eat food containing the “edible glue,” it triggers an immune response that damages the small finger-like villi in the intestinal wall, which absorb nutrients from food. When they are damaged, a person can become malnourished; some celiacs suffer from osteoporosis or iron deficiencies. The disease is treated by going on a gluten-free diet, which allows the small intestine to recover.
“There’s such a power to knowing your own story,” said Ahern, author of a blog and a book, both titled “Gluten-Free Girl.”
“I’d been sick, off and on, all my life, and always wondered what it was, what’s wrong with me. Knowing, finally, is such a liberation that I just embrace it all.”
Celiac disease can first show up in childhood or adulthood. It’s thought that the disease can be initially triggered by surgery, viruses, childbirth, pregnancy or severe stress. It is much better understood than in the past, said Dr. Peggy Marcon, a gastroenterologist at the Hospital for Sick Children in Toronto.
When Marcon began her medical training, she was taught that 1 in 2,000 people were celiacs; now it’s thought that 1 in 100 or 1 in 150 people are gluten-intolerant.
“Twenty years ago, people would have said celiac disease occurs in people from Western European ancestry,” she said, “but we actually know it occurs across all ethnic groups.” It was also thought of as a childhood disease that would be outgrown, but it’s now known the disease can show up in adulthood and is chronic.
Despite the increased knowledge, many celiacs remain undiagnosed. There are many symptoms of gluten intolerance, and not all celiacs will show the same ones. Diarrhea, weight loss and abdominal pain are the disease’s classic symptoms, but sufferers might also experience constipation, bloating, changes in weight, iron-deficiency anemia, osteoporosis, fatigue, muscle and bone pain or seizures.
Family members of newly-diagnosed celiac patients may also have the disease -- because it is a genetic disorder, a relative of a celiac is more likely to also be one -- though they are asymptomatic.
“We know now, through some of the screening projects, that there are a large number of people who present with other symptoms that weren’t necessarily always attributed to celiac disease,” Marcon said.
Detection is also easier -- through a blood test, where previously an intestinal biopsy was required -- but testing is still a barrier to diagnosis for some. The Canadian province of Ontario doesn’t cover the test under its provincial health insurance, Marcon said, and some insurance companies in the United States might not either. Americans without insurance have to pay for the blood test or a biopsy.
“In the United States,” Marcon said, “there would be millions of people who are undiagnosed.”
The average celiac in the United States waits 11 years to be diagnosed, said Ahern, who often speaks to other celiacs who, like her, had difficulty getting a diagnosis.
Celiacs can control the disease with a completely gluten-free diet. Avoiding foods that contain gluten is one factor, but cross-contamination must also be considered. Ahern got rid of her wooden cutting boards after her diagnosis because gluten from food prepared on them can remain on the surface, even after washing. Care should be taken in households where both gluten-containing and gluten-free foods are prepared, to ensure that shared cooking surfaces and utensils don’t transfer into a celiac’s meal.
Some celiacs simply stop eating in restaurants, Ahern said, because they don’t know which ones are safe and are afraid of making a fuss. But many gluten-free establishments do exist and more restaurants are beginning to cater to clients with dietary restrictions, including celiacs disease.
Processed foods can also be a minefield -- one that requires reading a lot of product labels -- though the availability of gluten-free options is increasing. The Hospital for Sick Children runs a Specialty Food Shop, where customers can talk to a dietician about their dietary restrictions and shop knowing the products have been checked for safety.
Sticking to the program, however, can be difficult. “It can be hard to convince an adult or a teenager that this is something they have to be on for life,” said Alisa Bar-Dayan, a dietitian who works in the Specialty Food Shop.
Even if they aren’t showing symptoms, celiacs who consume gluten could damage the intestine. In untreated celiacs, the disease is related to health problems like small bowel cancer, osteoporosis and fertility issues.
“It is one disease where if you adhere to the diet, you can reverse all of the changes in the intestine, and then you really are considered to be normal,” Marcon said. “It’s just that your body doesn’t forget that gluten is a problem.”
When Ahern found out she was a celiac, she didn’t mourn the foods she could no longer eat. With the knowledge that she could relieve herself of the illness and pain that had plagued her for years, she took the diagnosis as an opportunity to get back in touch with food and explore what it meant to her.
Now married to a chef at a gluten-free restaurant in Seattle, and with whom she is working on a new book, she credits her diagnosis with opening her up to a new, more aware way of eating. She wants to talk to other celiacs about how her diagnosis enriched her life instead of limiting it.
“When you think about going gluten-free if you don’t have to, it’s an idea, so of course you focus first on what you can’t have,” Ahern said. “When it is your body and your health, that stuff sort of just loses its attractiveness.”
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