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Sufferer offers tips on celiac disease

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BY MICHAEL HASTINGS

MEDIA GENERAL NEWS SERVICE

Published: June 30, 2009

Updated:

WINSTON-SALEM, N.C. - Grace Johnston had a great experience in the supermarket the other day. She walked in and bought brownie mix, cake mix and chocolate-chip cookie mix.

That's nothing special to most people. But it's a big deal to Johnston.

Johnston has celiac disease, a chronic, inherited disease in which the body cannot tolerate the gluten found in wheat. Celiac disease can cause malnutrition, and can produce such symptoms as chronic anemia, chronic fatigue, migraine headaches and nerve problems. People with celiac disease also are considered at greater risk for osteoporosis, diabetes, thyroid disease, lupus, Graves' disease and other problems.

Imagine life with no wheat bread, pasta, no breaded fried food, no cake, no cookies, no crackers. Even such innocent-sounding foods as candy or soy sauce may contain wheat.

In the 11 years since her disease was diagnosed, Johnston has learned how to do without wheat and gluten without starving to death. She's up to date on all the wheat-free mixes, products and cookbooks available.

In short, if anyone knows how to get along without wheat, it's Johnston.

Despite all her knowledge, though, she still got tickled to death when she walked into a supermarket and bought some new Betty Crocker gluten-free baking mixes.

You can practically hear her excitement in an e-mail she sent.

"I have made the cookies and the devil's food cupcakes, and I am having difficulty discarding the boxes. I feel I need to put them in a frame or a scrapbook. When I made my purchase, the cashier and the assistant manager asked me numerous questions about celiac disease. For the first time in a long time, I felt mainstream in a mainstream grocery store."

That's significant, because for years, celiac disease was a "hidden" disease. The many common symptoms, such as fatigue and aching bones, made the disease difficult to diagnose. "I was constantly told I had something idiopathic - an unknown disease - from the age of 5," said Johnston, 64.

Even after doctors properly diagnosed her disease, Johnston, who loves to bake, would wander the aisles of grocery stores looking in vain for baked goods or ingredients for them that she could eat without fear.

Eventually, she discovered expensive baking mixes that she could buy through the mail, but they were "pretty awful," sometimes all-out "gross."

Things gradually improved. She discovered the pioneer of gluten-free cooking, Bette Hagman, and later, Carol Fenster, both of whom have written landmark gluten-free cookbooks.

The mixes she could buy improved, too. Johnston encouraged Whole Foods Market to stock gluten-free goods, especially when she found out that a Whole Foods employee, Lee Tobin, had celiac disease.

Since 2005, Whole Foods has stocked an assortment of baked goods. "And, boy, are they good," Johnston said.

But that didn't stop Johnston from getting excited when word spread that Betty Crocker was developing gluten-free mixes. "Now people can walk into their regular supermarket and pick up something they can make quickly," she said.

Betty Crocker has four mixes, made with rice flour instead of wheat flour. They are for yellow cake, devil's food cake, brownies and chocolate-chip cookies. At $3.79 a box, they cost almost twice as much as regular mixes with wheat, but in the gluten-free world, "it's a very good price," Johnston said.

These mixes are very easy to prepare, she said, and they are tasty.

She also is encouraged that some supermarkets are also selling other gluten-free products, such as Pamela's pancake mix, Bionaturae organic pasta, and Nut Thin crackers.

Things have, indeed, come a long way, she said.

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