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When wheat makes you sick
Celiac disease requires big lifestyle change

By Barbara Duncan

I don’t know about you, but when I’m reminded about diseases that require severe dietary regulation, I feel in a bit of, well, panic. It is just in the back of my mind, but still, here but for the grace of mostly good fortune go I.

The thing is I’m not certain I could live without certain things that I would be required to leave behind. Refined sugar, for example, in the case of diabetes. Or pastry, as in the case of a less well-known illness, celiac disease.

A person with celiac disease has an auto-immune condition that damages the lining of the small intestine and renders them unable to tolerate gluten, which is a protein in wheat, barley, and rye, among other grains. Gluten is the aspect of those grains that make them sticky and stretchy, so they can rise (in the case of yeast and other breads, like muffins and cakes) or be rolled out, as in the dough for pies and other pastries.

If a person with celiac ingests glutens, they experience severe abdominal pain, cramping, and diarrhea. The damage to the intestinal lining prohibits nutrient intake and destabilizes electrolyte levels; either condition, when in extremes, can lead to death. Even when controlled, celiac disease is related to a very long list of debilitating conditions. A pretty good reason to follow the prescribed diet by avoiding gluten-containing foods!

My friend Anna (not her real name) is living with celiac disease. Before she was diagnosed, she was a gourmet cook, a dinner hostess extraordinaire. If one was fortunate enough to get an invitation to dinner chez Anna, one only sent regrets if one were in the hospital or dead. In fact, even the latter situation was iffy, because I believe Anna’s food could raise the dead.

As with most celiac sufferers, Anna’s diagnosis was a long time coming.

“I grew up in a very Ukrainian family, and we ate a lot of peroghies,” she says. “As a little girl, I remember having horrible stomach aches after those dinners and Momma rubbing my stomach for hours afterward.”

Those girlhood stomach aches were never investigated by a doctor, and by adolescence, Anna says, they seemed to go away.

Later Anna married and was at the centre of the Kinsmen social dinner-party whirl, but then the gastro-intestinal upsets started again.

I remember meeting up with Anna at a wedding, just as those symptoms had reappeared. She told me she was waiting to have her first glass of wedding wine until after some medication kicked in. It had been prescribed by a doctor who had told her she had a food allergy to grape juice.

That wasn’t it, though. Anna says she went through nearly every conceivable diagnostic test and was told she had everything from irritable bowel syndrome to Crohn’s disease, but none of the treatments worked. Finally, on the day before her own daughter’s wedding, when she was doubled over with pain and unable to keep in any nourishment (even Gatorade went right through her), her family took her to Emergency.

Among other things, the doctor biopsied her small bowel and as a result was able to make a definitive diagnosis. The lining of the small bowel in a healthy person is made up of waves of finger-like protrusions called villi; in a person with celiac disease, those villi are no longer raised. Anna’s villi were Saskatchewan-flat. She was diagnosed with celiac disease and placed on a gluten-free diet for life, to allow her villi to heal and her nutritional state to return to normal.

Eliminating gluten from one’s diet is tough. There are the obvious foods that contain wheat, for example, or even just wheat proteins: breads, cakes, cookies, pasta, crackers, pizza crust, and items to which bread crumbs are added, such as sausages and meat loaves.

Then there are the hidden glutens. They are in gravies and most prepared sauces, even some soy sauces; cream soups; many hard candies, licorice and jelly beans; even some medications use glutens as binding agents. You have to learn to read labels very carefully: anything with unidentified starch probably contains glutens; ingredients listed as “HVP” (hydrolyzed vegetable protein), “HPP” (hydrolyzed plant protein), or “TVP” (texturized vegetable protein) do, too.

We, in Edmonton, are fortunate to have a bakery dedicated to gluten-free products that ship to many markets in the city and all over the country, Kinnikinnick Bakery.

How is our gourmet, Anna, faring in her new, gluten-free life?

“It’s really not too bad,” she says, although she finds most replacement products, i.e. gluten-free versions of things made normally of wheat, like bread, are very inadequate in terms of taste and, especially texture. “Unless the gluten-free bread is straight out of the oven, it’s very dry, so I usually eat mine toasted.”

And her gourmet cooking? Anna has always been an adventurous tester of new recipes, and now she has a lot of new, gluten-free ones to try. In addition, she has found a lot of old standbys never really had any gluten in the first place. Anyone admitted to her dinner table, as I was recently, could not find anything wanting – even the dead.

For more information about the disease and sources of gluten-free products, contact the Edmonton Chapter of the Canadian Celiac Association: 5R17, 11111 Jasper Avenue, Edmonton, AB, Canada, T5K 0L4; Phone/Fax 780-482-8967; or ccaedm@telus.net. You can also check out their website: www.celiac.edmonton.ab.ca.