Disease Makes Some People Avoid Wheat

Jessica Callery's life revolves around wheat.

She's not a farmer. She's not a pastry chef. But the protein found inside the grain rules the Callery household.

Five months ago, Callery's 16-year-old daughter was diagnosed with celiac sprue.

"It's been quite the interesting journey," Callery said.

Her family has had to cut out traditional bread, pasta, cookies, crackers -- anything containing the gluten protein.

When a person with celiac sprue eats gluten, "the body's immune system attacks the gluten and damages the small intestine," according to WebMD.com. Left untreated, celiac can interfere with a sufferer's ability to get proper nutrients into the bloodstream.

Diagnosis Can Take Years

Callery’s daughter got a relatively quick diagnosis after the doctor started looking for the source of her stomach complaints, but most celiac sufferers aren’t so lucky. Doctors estimate is takes more than a decade, on average, for a patient to get the proper diagnosis.

Along the way, many are told they have irritable bowel syndrome, lactose intolerance, too much stress -- and some are told it is all in their heads.

"The common denominator is frustration," said Dr. Alessio Fasano, director of the University of Maryland Center for Celiac Research. "They've been shopping around and trying to understand what's wrong with them. They've tried everything under the sun."

Part of the problem is there is no one set of symptoms for a doctor to identify. Celiac disease can manifest as diarrhea or constipation, short-term memory loss, seizures, miscarriages or infertility, and weight loss among a long list of symptoms. Doctors first have to suspect celiac, then run a blood test.

Celiac is an auto-immune disease and it doesn't discriminate when choosing victims. However, Fasano said women are twice as likely as men to be diagnosed. Children from 7 to 10 years old and adults in their 30s and 40s tend to be diagnosed more often. Celiac is found in all racial groups.

History Of Disease Starts Late In U.S.

As difficult as diagnosis is today, it was much worse just 15 years ago. Fasano, who is also chair of the Children’s Digestive Health and Nutrition Foundation, said that as late as the mid-1990s, American doctors believed celiac sprue was an illness that was exceptionally rare in the U.S.

Despite diagnoses in Europe that equaled as many as one in 200 people, American doctors were recording celiac in just one in 10,000 patients. It wasn’t that Americans didn’t suffer from the disease, Fasano said, it was a misinterpretation of what to look for.

"Our textbooks had said there was a specific set of symptoms, but the epidemiology was that it was multi-symptom,” Fasano said.

Jean E. Guest, the dietitian adviser for the Celiac Sprue Association, worked with some of the earliest doctors to diagnose celiac when she was at the University of Nebraska Medical Center.

“There is a classic look of malnutrition (that doctors had primarily looked for the in ‘80s), but only about 10-15 percent of patients present classical symptoms,” Guest said. “If your only symptom is anemia or osteoporosis, you’re going to take a long time to get picked up. What you often see with kids is growth failure, but a lot of kids’ only symptoms are mood swings and behavior symptoms.”

Doctors had to expand their definition of what constitutes celiac before they could correctly diagnose it. Now, it is estimated as many as 3 million Americans have it.

Treatment Means Diet Changes

The only treatment for celiac sprue is nixing gluten exposure. That's tougher than it sounds.

Gluten isn't just in wheat products, it may also be found in oats and barley, and it is used as a thickener in products you don't associate with wheat such as pudding and candy. CDHNF provides a list of "good" and "bad" foods.

Guest said her consultation with newly diagnosed sufferers often starts with the five steps of grief. The patient's whole life as he or she knows it is about to change forever, she said. There are support groups to help people adjust.

The next step is a kitchen audit -- determining which items already in a patient's pantry can stay and which ones have to go.

"I suggest a top-shelf strategy of putting gluten-free on top so things don’t contaminate as they fall through the shelves," Guest said. "I suggest gluten-free mixers, cutting boards (and) different knives for peanut butter so you don't cross-contaminate."

To make things worse in the grocery store, Callery said, there's no standard for labeling gluten. So she often hits the market with her laptop in her cart.

"Every single thing I think about buying, I Google it to see on the (message) boards if it's a problem. I ended up having to throw out half my kitchen and rebuy," Callery said.

Gluten-Free Food Labels

The Food and Drug Administration is working on a labeling law to define "gluten-free" labeling on packages. The rule was expected in August 2008, but has not yet been handed down. The proposal would limit a "gluten-free" label to ingredients that have less than 20 parts per million of the protein.

In the meantime, an industry has sprung up to serve the celiac population. Guest estimates there are several thousand new offerings each year for celiacs. Callery said her family has found that not all are edible.

"Gluten-free brands -- that's been a journey, too. Some brands are lifesavers and we really like (them), but we've found any bread you buy is disgusting," Callery said.

And expensive. Callery estimates that a regular loaf of bread costs $2 and a gluten-free loaf is $6. Guest said she's like to recommend that every member of a household with a celiac patient go gluten-free, but the cost can make it impossible for some.

Guest said it can take up to two months for sufferers who change their diet to start feeling better.