Winnipeg Free Press - PRINT EDITION

Against the grain

An intolerance to gluten means all our favourite carbs -- bread, pasta, cookies -- are off limits to celiac disease sufferers

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As a young boy in Bavaria, Lorenz Schlosser knew he was different.

After eating the oatmeal his mother would feed him -- an inexpensive staple in postwar Germany -- the pale, sickly boy would often throw up.

A bout of diarrhea after lunch was common, making his hour-long trek home from school unbearable.

"Walking home was a big problem. You eat your lunch. You go home. Now what? There are no port-a-potties along the way," says a laughing Schlosser, now 56.

When he moved to Winnipeg 27 years ago, Schlosser still suffered digestive issues -- something he believed was just a fact of life for him.

Later, fed up with the pain and discomfort most foods brought him, fed up with doctors not knowing why he felt ill, he just about gave up eating. He lost nearly 30 pounds and felt worse than ever.

Things changed 11 years ago, when a gastroenterologist finally diagnosed the La Broquerie farmer.

He had celiac disease. A blood test and a bowel biopsy confirmed it.

Patients with celiac disease cannot eat gluten -- the glue-like protein found in many grain products such as bread, crackers, cereal and pasta.

Wheat, rye and barley contain gluten. Oats that are not pure and uncontaminated can also adversely affect people with celiac disease.

Everything containing wheat flour -- including breaded meat, soups thickened with flour, some yogurts and even soy sauce -- is off limits for a celiac patient.

Experts estimate that between one in 100 to one in 150 people live with celiac disease, an autoimmune illness that is carried in genes.

Some don't even know it, says Dr. Ralph Warren, a gastroenterologist in Toronto who sits on the professional advisory board of the Canadian Celiac Association.

Warren helped put together a survey of 5,280 Canadian celiac patients -- the largest of its kind in the world. It revealed that most lived with the disease for an average of 11 years before a doctor diagnosed them.

"There are a lot of horror stories out there. People have been bounced around for up to 11 years. Over that time they have wasted away slowly," says Warren, noting that undiagnosed celiac disease hinders the absorption of nutrients and destroys the small intestine.

Although there is no cure, a gluten-free diet can turn the condition around and even repair existing damage to the intestines.

Think you have celiac disease? Warren warns you not to go off gluten until you've been tested. Doing so invalidates the tests used to diagnose the disease, he says.

Today, although Schlosser cannot consume lactose or high amounts of fat -- a result of living for 45 years with undiagnosed celiac disease -- his life has drastically improved since going gluten free.

"When I was first diagnosed... I remember there was a rice bread mix and there was a white bread mix and there was a cake; that was all what I could get 11 years ago."

So, Schlosser and his wife, Waltraud, took matters into their owns hands and founded Lorenzo's Speciality Foods, a St. Mary's Road shop that carries only gluten-free products -- nearly 600 of them.

A few of the store's products come from Canada, but most come from places like Germany, Australia and England, where awareness of celiac disease is more prevalent.

The Schlossers have run the store for seven years and customers -- those who live with gluten sensitivities to those with full-blown celiac disease -- have flocked to them.

Waltraud says she makes purchasing decisions carefully. She often rejects manufacturers if she's not convinced their food isn't completely gluten-free.

"If I don't get it in writing from companies that it's gluten-free, I'm not taking it. If they (manufacture) other things besides that, I don't take it. And I make my point clear," says Waltraud.

Once a week, the pair even bake their own gluten-free bread with a variety of wheat-free flours. In place of gluten, they use xanthan gum, a fermented corn sugar that holds the bread together.

The bread is popular.

"We bake 400 loaves of fresh bread on Friday night and sell them all on Saturday," says Waltraud, who carries frozen bread the rest of the week.

She admits that gluten-free items are more expensive than regular food; most is manufactured by smaller companies and has to be imported.

Her gluten-free bread costs $5.50 a loaf.

Last spring, Darlene Hendler's doctor told her she probably has celiac disease.

The Winnipeg social worker admits that adjusting to her new lifestyle has been difficult.

"There's a cost factor. When you start going gluten-free and you start eating specialized products, it costs a lot more," says the grandmother, who spends hours on the Internet researching her condition.

She purchases her gluten-free food at Safeway, Organza and Meyers Drugs.

Dining out is difficult; restaurants try to accommodate her but she still sometimes gets sick afterwards.

"It clearly creates a kink in your daily life, in your routine," says Hendler, who admits she misses her favourite "comfort foods" -- macaroni and cheese and lasagna.

Winnipeg gastroenterologist and celiac researcher Dr. Donald Duerksen is part of a North American study testing a drug that may allow patients to tolerate foods with gluten.

"It's the first time that a medication may have some possible benefit (to celiac patients)," says the University of Manitoba professor.

He's also working on a larger study looking into the relationship between osteoporosis and celiac disease. The theory: Since celiac disease interferes with absorption of nutrients like calcium and vitamin D, it may lead to the bone disease.

Winnipeg naturopathic practitioner Gordon Sims says he approaches celiac disease differently than conventional doctors. He often advises patients who he believes have sensitivities to gluten to take in acidophilus, good bacteria that balance bacteria in the gut.

"You look at creating healing conditions in the gastrointestinal tract. You look at whether there's a problem developing before it comes," says Sims.


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Facts about celiac disease


What it is: An incurable intolerance to gluten, the protein found in wheat, barley, rye and other grains.


Causes: Celiac patients must have the right genes to develop the disease. A physical illness, an operation or a pregnancy can trigger the disease, says Dr. Ralph Warren, a Toronto gastroenterologist and spokesman for the Canadian Celiac Association.


Consequences of celiac disease: Can destroy the intestines and lead to nutrient deficiencies.


Symptoms: Diarrhea, constipation, bloating, fatigue, joint pain, itching rash.


Who's most at risk? People with autoimmune diseases such as hypothyroidism, Type 1 diabetes, and those whose parents, children or siblings already have celiac disease.


Treatment: A gluten-free diet.


Screening: Blood tests and bowel biopsy. Screening must be completed before treatment of the condition.


How many Canadians have celiac disease? Winnipeg expert Dr. Donald Duerksen says one in 100 to one in 150 people.


Interesting fact: Celiac patients often have an intolerance to lactose, the sugar found in dairy products.

Republished from the Winnipeg Free Press print edition March 23, 2009 B6

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