Against the Grain

Peter H. R. Green became the go-to doc for a shadowy illness by learning to diagnose celiac disease.

by David J. Craig Published Winter 2009-10
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Give them not their daily bread

Today, gluten-free food represents a $1.8 billion annual market in this country. That’s grown 25 percent in each of the past four years. Walk down the aisles of a Whole Foods and the universal symbol for gluten-free food — a wheat stalk with a slash through it — appears on hundreds of breads, pastas, pot pies, pizzas, crackers, cookies, muffins, beer, and even cosmetics.

Medical schools in the United States are updating the way they teach celiac disease. At Columbia University Medical Center, Green has trained colleagues to keep an eye out for celiac disease and he delivers an annual lecture that all students are encouraged to attend.

The typical American doctor remains uninformed, however. About 75 percent of all patients now diagnosed at the Celiac Disease Center arrive not by physician referrals, but because patients learned about Green’s practice by searching the Internet or through a patient advocacy group. That shouldn’t be surprising, though, because Americans with celiac wait an average of 11 years before they’re properly diagnosed, as Green concluded in a recent paper.

The total number of people who have celiac disease seems to be increasing dramatically. One study conducted recently at the Mayo Clinic in Rochester, Minnesota, and based on analyses of old, preserved blood samples, suggests that since 1959 the prevalence of celiac disease in this country has increased from 1 in 400, to 1 in 100. A major study in Finland in 2004 found the same rate of increase over that period. In both countries, diabetes rates also increased fourfold. A widely discussed hypothesis, offered first by the British epidemiologist David P. Strachan, is that people are becoming more prone to autoimmune disorders like diabetes and celiac disease because children are exposed to fewer germs and bacteria than in the past. This might stunt the development of the immune system, say many scientists.

Among U.S. doctors a cycle of ignorance took root: Physicians rarely met anybody who'd been diagnosed with celiac disease, so they regarded it as a medical oddity not worth learning about.

“What’s really tricky is that the additional celiac cases that we’re seeing are the kind most difficult to spot,” says Green. “They’re the subtler cases, the ones where people don’t have any obvious gastrointestinal symptoms.”

Celiac disease is transforming itself into a more sneaky illness, Green believes, in part because women around the world are breastfeeding their children at higher rates than they did a few decades ago. Research suggests that a child who is breastfed is less likely to develop celiac disease — and for this reason Green definitely recommends it — yet breastfeeding also diminishes the likelihood that a youngster with celiac disease will show the types of obvious gastrointestinal symptoms that, ironically, help doctors spot the condition.

“You can understand why lots of cases are missed,” Green says. “And the only way that’s going to change is if patients take charge of their own care. If they suspect they have a problem with gluten, they need to go to their internist and say, ‘Is it possible I’ve got celiac disease? Why don’t you test me? Why don’t you refer me to somebody who treats this?’ We’ve got to talk up this disease.”

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