Sliced Dread 

Gluten causes countless Americans crippling stomach pain. Why don't they know it?

Page 3 of 4

Linden says she took a fecal fat test at the Stanford Celiac Clinic last summer to gauge how much fat she was absorbing. She'd read a study saying celiacs don't absorb nutrients properly even after years of avoiding gluten. "My brother has been extremely, extremely sick, even though he's on a gluten-free diet," Fiala says. His wife, she explains, doesn't always tell him in time whether something she has cooked is safe. Fiala also thinks his stepsons might be deliberately tormenting him by using the same pans and toaster on gluten-containing products.

"Ohhh, that's just cruel!" Furey-Crane says. "That's why his body isn't healing."

"Well, that's what I think," says Fiala.

"I was sick for a whole year after I was diagnosed," Linden says.

"I think it takes a long time to heal," Fiala agrees.

The table discusses why many people with digestive problems are resistant to going gluten-free. "It was a huge emotional hurdle," Fiala admits. At first, she says, she'd have reoccurring nightmares about slipping up. "I dreamed about [eating] a scone," she said. "Then I'd get all upset. ... Oh my God! I'm going to die!"

Contributing to the lack of understanding about celiac's prevalence is that many people with symptoms never get tested, while others are self-diagnosed by debatable methods. Their decisions could have serious consequences.

Mary Fiala was in her thirties when she began having digestive problems — swelling, gas, diarrhea, and extreme pain in her gut. Her doctor gave her a pregnancy test, and upper and lower gastrointestinal tests, but all came back negative or inconclusive. "They shrugged their shoulders and said ... you just have spastic colon," she said. In other words, Irritable Bowel Syndrome.

Doctors suggested she learn to manage her stress better. But by early this decade, Fiala found herself in extreme misery. "There was a whole year where I would spend entire days in the bathroom," she recalled.

Then her brother, who had similar symptoms, told her about Kenneth Fine, a doctor in Texas whose mail-order testing convinced him he had celiac. He recommended she take the same test. "I kind of hemmed and hawed for a few months and then I said, okay, I'll do it," she said. "And then it suddenly hit me like a ton of bricks, that wow, this could be the answer. Once I got the test results, it seemed so obvious that there was no question. And I immediately stopped eating anything with gluten at that point."

Fine's tests, which does not actually diagnose celiac, require mailing a stool sample to his Enterolab. According to his web site, they check for the presence of antibodies and malabsorption due to "damage, even slightly so, by gluten (or perhaps other factors)." The site also claims his tests are "more sensitive than blood and saliva tests, or biopsies" and that gluten does not need to be introduced into the diet for test purposes if the person is already gluten-free. Dozens of testimonials praise the physician for finally solving their digestive problems.

Stanford celiac researcher Chaitan Khosla declined to speak on the legitimacy of Fine's stool test, but said, "Online or by-mail diagnoses are generally not a good idea for most diseases."

Others were less bashful. "This is an unproven method," said Ellen Switkes. "As far as I'm concerned, if this is really a legitimate method of diagnosis then it should be peer-reviewed and it should be published. The fact that it is not published speaks volumes as far as I'm concerned. And it's very expensive."

The price tag for Fine's Gluten Sensitivity Stool and Gene Panel Complete: $369. In response to e-mailed questions, Fine said his method is in the process of being peer reviewed, and that it is not, in fact, diagnostic, as some patients appear to have concluded.

The Celiac Disease Foundation recommends Denver-based Kimball Genetics, which began offering a DNA test in 2002. The test requires sending cheek cells, costs $395, and has a one-day turnaround. While it's not diagnostic, it can rule out celiac as a possibility. The company also has an antibody blood test, which is only available through a doctor.

But many people who've spent years suffering while their doctors fumble feel they don't need a clinical diagnosis to validate their suspicions. "We've been through enough with the medical profession with all of this for so many years that we don't want to have an invasive procedure just for somebody to tell us what we already know," said Fiala, referring to the endoscopy needed to sample a patient's villi.

Khosla, however, believes a definitive diagnosis is crucial, since gluten sensitivity can indicate other, even more serious problems. It's also possible for a person to just be gluten-intolerant or have a wheat allergy without having the genetically linked celiac disease.

Switkes fears undiagnosed celiacs could run into problems in environments where they can't control their eating, such as a medical facility. "You'd think the hospital would be the safest place to eat," she says. "Wrong! Don't eat anything."

The availability of better research could improve life for celiac patients. But celiac research barely exists. Quite simply, there's no funding, according to Elaine Monarch of the Celiac Disease Foundation.

Dr. Alessio Fasano, director of the Center for Celiac Research at the University of Maryland, says that while there are only seven grants for celiac disease research funded by the National Institutes of Health, other diseases with a much lower incidence (such as Crohn's disease, Type 1 diabetes, and cystic fibrosis) receive hundreds of grants. The average grant is about $250,000 per year, he said.

Celiac is a problem in biomedicine that has fallen through the cracks, Khosla said, "more serious than most think, more pervasive than most recognize." That's one reason he began researching it back in 1999. It's also the only human autoimmune disease where the trigger is a defined chemical. Plus, his wife and son have celiac.

A few years ago, Khosla discovered that mammals have difficulty digesting gluten, and that the most difficult-to-digest portions are also those most toxic to celiac patients. Currently, he and Gary Gray, who heads the Palo Alto-based Celiac Sprue Research Foundation and is a director of the Stanford Celiac Sprue Clinic, are working on enzymes they hope will be able to neutralize gluten in moderate amounts.

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