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December 20, 2005

Camille Adams, 7, has had to learn a whole new way of eating since being diagnosed with celiac disease, a genetic disorder in which gluten triggers an autoimmune response in the small intestine.
Mail Tribune / Roy Musitelli

Wheat intolerance

Anyone with this allergy faces a struggle to find safe, nutrititional foods because so many products nowadays have wheat gluten in them

By JOHN DARLING
for the Mail Tribune

The staff of life — bread — is the staff of a lot of health problems to a significant number of people.

They are sensitive or allergic to gluten, a protein in most grains, and they attribute lethargy, bloating, joint swelling, muscle pain, headaches, diarrhea, gas, malnutrition and an inability to gain weight to common foods such as bread, pasta or cake.

Wheat intolerance is on the rise because we eat much more of it than we did a century ago — and because wheat has hybridized in that period, forming new kinds of molecules that our bodies don’t recognize, says Laura Robin, an Ashland physician who has gluten intolerance. So does her husband.

"Wheat is in everything now," says Robin. "The way to find out if you’re intolerant is to go off it a few weeks, which can be difficult because it’s in so many things."

Gluten intolerance’s symptoms resemble those of many other disorders, and it can be misdiagnosed, she adds, recalling the case of a patient in her mid 30s who was on narcotics and a brace for back pain that appeared to have no cause.

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"As a last resort, I took her off wheat for a month," Robin says. "That was it. She felt great from then on."

Gluten intolerance is on the moderate end of the spectrum, and people with it sometimes report being able to eat bread or pasta once a week.

At the more serious end are people like 7-year old Camille Adams of Medford. She has celiac disease, a genetic disorder in which gluten triggers an autoimmune response in the small intestine. It affects one in 133 Americans, says her mother, Joyce Adams.

"Camille was small, sickly, vomiting a lot and was labeled as having a ‘failure to thrive,’ " says Joyce Adams. "The doctors weren’t looking for it. Celiac was thought to be very rare."

Now steering clear of gluten, Camille is thriving. Her family has learned to avoid the many places gluten hides — in modified food starch, natural flavorings, fillers, binders, hydrolyzed vegetable protein, candy, soups, cold cuts and anything with malt, which comes from barley, says Adams.

She has started ROCK, or Raising Our Celiac Kids, a group that educates markets and restaurants about labeling gluten-bearing foods and creating gluten-free menus and store sections. Working with GIG, or Gluten Intolerance Group, businesses including Food 4 Less, Burger King, Outback Steakhouse and others have gotten on board, she adds.

"It’s not just products, it’s also practices," says Adams. "They have to learn about not using the same cutting board or deep-fryer for wheat and gluten-free food. It contaminates the gluten-free item and celiacs have a reaction."

"People with celiac disease have to be far more careful," says Medford nutritionist Christy Morrell. "When gluten comes in contact with the villi of the intestines — these are filaments, like a shag rug, that absorb nutrients — instead of standing on end, they flatten out and lose their ability to absorb. As soon as these people stop using gluten, the villi stand right back up."

The Celiac Disease Foundation, at www.celiac.org, cites many other disorders that can result from untreated celiac disease, including iron deficiency anemia, osteoporosis, nervous system disorders, lactose intolerance and intestinal lymphomas.

To diagnose celiac disease, patients need to get an endoscopy and biopsy of the intestine "as is," not after going off wheat, to get an accurate reading and inform family members who may have the same gene, says Adams.

Only 3 percent of people with celiac disease have been diagnosed, according to the Celiac Sprue Association at www.csaceliacs.org. This means 2.1 million Americans have it and don’t know it — or that it may be misdiagnosed as a disease with similar symptoms, such as irritable bowel syndrome or chronic fatigue syndrome, Adams says.

It’s an adjustment, to stock the pantry with all gluten-free foods, but the diet, which naturally includes more produce, is better for everyone, says Adams. It includes many starch substitutes that few people have heard of — like breads and flours made from rice, tapioca, amaranth and corn.

"You end up eating a more basic diet — foods with a lot fewer ingredients listed," says Adams. "The more ingredients you see on the package, the more likely it is to have gluten."

As awareness of gluten intolerance and celiac disease grow, so has the number of products addressing the problem.

Until recently, celiacs and others on gluten-free diets had to rely on expensive foods available only at specialty stores, by mail or over the Internet. But that is rapidly changing as grocery stores, food manufacturers and restaurant companies eye this special market, much as they have the market for lactose-free dairy products.

Many bakeries, for example, are making bread of spelt flour, a slightly sweeter and more expensive form of wheat, says Guy Souerbry of Village Baker in Ashland, who makes about 50 loaves of it a month.

"It’s for people with wheat allergies, who say they get skin rash, digestion problems, tingling, welts. They don’t get it with spelt," says Souerbry, who also makes a yeast- free sourdough spelt for those allergic to yeast.

While the market for celiac-friendly foods is still relatively small, sales of gluten-free products at conventional supermarkets — from soups and frozen pizza, to pretzels and cookies — have been exploding. Supermarket sales of gluten-free products jumped 18 percent in the 52-week period that ended in June, while sales at natural-foods stores grew by 9.1 percent, says David Browne, content services director at SPINS Inc., a San Francisco market-research firm that focuses on the health-food industry.

In all, he says, some 2,000 products are marketed as gluten-free, with annual sales topping $600 million.

"This is the beginning of a revolutionary market," says Dr. Alessio Fasano, director of the University of Maryland Center for Celiac Research in Baltimore. "Gluten is poison for them. It makes them sick. It’s not a lifestyle (issue). It’s a medical necessity."

John Darling is a freelance writer living in Ashland.E-mail him at jdarling@jeffnet.org. The Wall Street Journal also contributed to this story.



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