It was just a little piece of Dutch licorice. Ellen Bayens popped it in her mouth without a second thought as she wandered through the science fair at her son’s high school. It was a brand she thought was safe, but it wasn’t.
Within the hour, she feared she would become a science experiment rather than spectator, a 48-year-old human balloon floating up along the ceiling, painfully bloated and powered by bursts of gas.
“How could I have done this? How could I not know the licorice contained gluten?” Bayens angrily asked herself. She’d been vigilant since doctors told her the year before that she had celiac disease.
After being miserable for a quarter century, after suffering with gas, bloating and depression, she had found a new life when she was diagnosed with the disease and cut gluten, a protein in wheat, barley, rye and some oat products, from her diet.
And she was vigilant – until this time. She knew she had no more than 20 minutes before her circumference grew by at least six inches, and that driving home would be dangerous because she could not sit upright and the seatbelt, even pulled out to its maximum length, would cut sharply into her distended belly.
Bayens had been “glutened”, a term people with celiac disease use to describe the accidental consumption of the forbidden protein, when they are suddenly and painfully reminded of the symptoms that led to cutting it out in the first place.
Like multiple sclerosis and type 1 diabetes, celiac disease is classified as an “autoimmune” condition because the body’s immune system turns on itself, causing inflammation in the small intestine whenever it detects gluten, and leading to damage to the villi, finger-like projections that are essential for absorbing nutrients.
But unlike other autoimmune diseases, the symptoms for celiac disease are myriad and confusing – anything from diarrhea, nausea, abdominal pain and bloating to depression, fatigue, easy bruising, infertility and osteoporosis. Physicians can easily mistake the symptoms for other conditions.
In fact, it takes an average of 12 years for a celiac diagnosis, according to the preliminary findings from a major national survey, conducted by the Canadian Celiac Association in tandem with Health Canada, on what life is like on a gluten-free diet. For most people, the last thing they want to do is experience their symptoms again.
But that’s easier said than done: when you have celiac disease, every morsel of food that goes into your mouth must be scrutinized, travel and dining out carry risks, social situations can be awkward and an understanding and accommodating support system is essential for success.
Next Page: A Surprising Number Will ‘Cheat’