Kathe Beck was sick for 11 years and couldn't figure out why. She was poked, prodded and went through a barrage of tests to solve her malady.
The doctors' diagnoses was just as varied: Crohn's disease, food poisoning, parasitic infection, viral infection, irritable bowel syndrome — even stress-induced neurosis, for which Beck was prescribed tranquilizers.
Beck was under doctors' orders not to do anything strenuous, meaning she gave up many of her favourite pastimes.
"It was boring sitting around the house," she says. "I had done a lot of volunteer work, which I had to quit, and a lot of social contacts that I had to give up."
Doctors eventually found what they thought was the cause of her illness: a wheat allergy. Beck was given shots but was told she did not have to drop wheat from her diet.
That's when things got worse. Beck ate very little; her diet consisted of bananas, toast and applesauce. When the toast made her sick doctors restricted her to just bananas and applesauce.
"I had had a headache for about a year, that went away in three days. After about five days I was able to wake up in the morning feeling awake and alert. My energy came back."
Beck's doctor then traced the true source of her illness, gluten, and diagnosed her with celiac disease.
That was 24 years ago. While medicine has since made considerable advances, many celiacs can still go undiagnosed for several years because symptoms vary and the condition isn't well known.
Celiac disease is a condition where the surface of the small intestine is damaged by gluten, the name given to proteins found in wheat, rye, barley and commercial oats. Gluten prevents celiacs from properly absorbing nutrients like iron, calcium, Vitamin D, protein, fat and other compounds.
Symptoms vary depending on age and by individual, from the digestive — cramps, bloating, chronic diarrhea — to anemia, weight loss, fatigue and irritability. According to Health Canada the disease affects almost one per cent of Canadians and can be inherited.
The only treatment is a wholesale lifestyle change where gluten is dropped from the diet. It can be a difficult adjustment, as even a misplaced crumb with gluten can lead to severe symptoms.
Help is available
Knowing where to eat out or find quality gluten-free products is simpler than it was 20 years ago and it's getting easier, Beck says. The Edmonton chapter of the Canadian Celiac Association (CCA) is there to help and has about 800 members. Beck has been a CCA volunteer for approximately 20 years.
"We try to help people who have been diagnosed [by providing them] with a diet, support them in any way we can, get them information on where they need to buy the foods they need," she says.
Beck says mainstream grocery stores are starting to offer more gluten-free products, but reading labels is still a must. Even that doesn't tell the whole story.
"There can be items or ingredients in manufactured foods labelled as starch and you don't know if this is a starch from a gluten-containing grain or whether it's cornstarch for instance, which is perfectly safe."
Quality is far from a guarantee with gluten-free products. Beck notes bread made from rice flour has a much different taste than the wheat product — her first baking attempt resulted in brick-like loaves.
"For the first five years I couldn't eat gluten-free bread, but I got used to it," she says.
Robert Logue couldn't get used to it and wanted something better. The co-owner of La Crema Caffé in downtown St. Albert has a gluten intolerance. A discussion with a staff member, a celiac, about the poor quality of some gluten-free foods led to a separate gluten-free menu.
That menu now spans about 20 dishes, ranging from chicken potpie to apple pie, and gluten-free specials on Friday. It's become such a hit gluten-free is now a key part of La Crema's business model.
"We get people from all over — Fort Saskatchewan, Edmonton, Bonnyville — that come and hear about our product," Logue says.
The menu items are gluten-free but more importantly they're delicious, Logue explains over forkfuls of a gluten-free berry cheesecake that is indistinguishable from the real thing. "That's the thing about all our products — you wouldn't know the difference."
He attributes the quality to the hard work of his "artisan" gluten-free baker, Amanda Duttenhoffer, a diagnosed celiac of five years. Many of her recipes are the result of trial and error, she says, since replacing the wheat flour is no simple task, especially in baking. Doughs require a certain amount of stickiness, and starches like rice flour result in chalky baked goods.
Most of Duttenhoffer's recipes use a blend of four to five gluten-free flours. Customers let her know with their forks when she's got it right and the word is spreading in gluten-free circles.
"There's a lot of celiacs out there who want a regular diet and there's nowhere to go and get it," she said. "I know from my own experience if I know of a place that has a few products I'll drive across the city to get it."
The gluten-free menu has been such a hit Logue plans to open a gluten-free bakery in St. Albert this spring. The bakery will stock a gluten-free deli counter inside La Crema, plus health food and organic stores in the region.
The gluten-free menu has attracted its share of fans, including naturopaths and food specialists who send their clients to La Crema.
Lisa Hänel is a St. Albert-based personal life coach who also has a gluten intolerance, and recently found the two go hand-in-hand. Hänel recently held a gluten-free seminar at La Crema and plans more in the future.
Hänel aims to help people transition to a gluten-free diet and says she's a firm believer in listening to what your body tells you about the foods you consume. Staying positive is also important, she says, as many celiacs view the diet as a life sentence of brown rice. "[They fail to realize] how much of a rich variety of food there is when you're on a gluten-free diet."
Being branded a "picky eater" for inquiring in a restaurant or party if food has gluten is another mental hurdle, Hänel adds.
"That's a huge hill to get over. It's a mountain for some people," she says, but adds that inconvenience pales in comparison to the symptomatic effects of taking a risk and consuming wheat flour products or even food that comes into contact with gluten.
During the holidays, when eating to excess is a national pastime, Hänel recommends common sense. Gravy should be avoided unless it contains a gluten-free thickener, as should stuffing. Anyone with a high intolerance should also avoid pre-seasoned turkey, which can contain gluten. When it comes to dessert it's best to bring your own. "If you have a sweet tooth desserts are a nightmare," she says.
Beck has seen a sharp increase in awareness about gluten-free foods in the 24 years since her diagnosis. She has several friends who go to great lengths to provide gluten-free options. It's part of the giving spirit of the season.
"Some have even told me about new products that I haven't discovered," she says.