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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Gmyrek is one of the few people with celiac disease in the United States today who are fortunate enough to be diagnosed. An estimated 3 million Americans — about 1 in every 100 — has celiac disease, yet 97 percent of them don’t know they have it, according to Green, coauthor of the 2006 book Celiac Disease: A Hidden Epidemic, which will be published in an updated edition by HarperCollins in January. Moreover, the prevalence of the disease is increasing: The percentage of Americans with the disorder has increased fourfold in the past 50 years, for reasons that are unclear to scientists.

Fortunately, few people with celiac disease experience symptoms that are as painful as Gmyrek’s. But that doesn’t mean their health situations are less critical. Most people with celiac disease will at some point be treated for a serious condition that stems from the breakdown of their small intestine, usually by a physician who is unaware of the underlying inflammation, Green explained recently in his office at CUMC. He ticked off a partial list of health problems that can result from celiac: osteoporosis, anemia, chronic fatigue, weight loss, diabetes, attention deficit disorder, arthritis, migraines, seizures, numbness, infertility, depression, and intestinal cancer.

Photo credit: Levi StoloveCeliac disease is a master of disguise because it may strike any section of the small intestine, with each section being responsible for the absorption of different vitamins and minerals and associated with different biochemical changes in the body. Even the most diligent doctors have difficulty spotting it. “Yet in Finland, they catch 70 percent of all cases, and in Italy, Ireland, and Australia, they spot an estimated 30 to 40 percent of cases,” says Green. In Europe, dermatologists are trained to consider celiac as a potential source for skin conditions, he says, just as hematologists know that celiac is a possible explanation for anemia and neurologists know it can cause numbness.

Why are U.S. physicians spotting only 3 percent of cases? Part of the problem is that celiac disease, because it’s treatable without drugs, hasn’t attracted much attention from medical researchers in the United States, says Green. Drug companies pay for 80 percent of all medical research in this country, he points out.

“If drug companies don’t think there’s money to be made treating celiac disease,” Green says, “doctors aren’t going to see many research papers about it, they’re not going to hear lectures about it at the big medical-education conferences sponsored by drug companies, and they’re certainly not going to have attractive ex-cheerleaders showing up at their office doors with samples of gluten-free food, asking them how many people they diagnosed with celiac this week.”

The secret life of wheat

The Greek physician Aretaeus of Cappadocia is credited with identifying celiac disease, having written in the first century AD of a “coeliac affection” that made the stomach “irretentive of food.” He named it after the Greek word for abdomen, “koelia.”

The disorder had probably appeared 8,000 to 12,000 years earlier. That’s when humans, hunter-gatherers until then who survived on fruits, nuts, and the sporadic feast of meat, began cultivating crops, Green writes in A Hidden Epidemic. In this era, people in what is now Syria crossbred several types of wild grass to produce a large and nutritious grain, wheat. Wheat proved ideal for making bread because it gets sticky when mixed with water, a quality derived from gluten, which is a protein made of an unusually long peptide chain of 33 amino acids. Humans don’t have digestive enzymes to break down gluten’s complex molecular structure, but the protein is expelled harmlessly from most people; it’s flagged as an intruder only in those with an overly cautious immune system.

Scientists in the late 19th century first noticed a link between carbohydrates and celiac disease. (Rice and bananas were recognized as safe and so patients were encouraged to eat lots of them.) In the 1940s, the dietary basis of the condition became clearer when the Dutch physician Willem-Karel Dicke observed that, during bread shortages caused by World War II, many sick children in his country felt better. Dicke and other scientists soon pinpointed gluten as the culprit behind celiac disease.

By the 1970s, doctors had acquired the tools they needed to diagnose celiac, Green writes. Blood tests could spot gluten-specific antibodies and a painless intestinal biopsy procedure would reveal the condition’s signature anatomical damage: On the inner wall of the small intestine, villi, microscopic protrusions that stand plump and erect to absorb nutrients when healthy, instead would be flat and shriveled.

These diagnostic advances changed the way doctors viewed celiac disease, which is also called sprue. Prior to the 1970s, celiac disease was considered a rare childhood disorder because its gastrointestinal symptoms, such as diarrhea, tended to be most severe and recognizable in young children, when they occurred at all. But as medical technology enabled doctors to detect celiac disease in the absence of these symptoms, physicians realized that the disease was a lot more common than they had previously suspected.

Doctors in Europe were the best at diagnosing celiac disease back then, just as they are today. The science journalist David P. Hamilton has documented why: Countries such as Britain, Italy, Finland, and Sweden, which have nationalized health-care systems and invest large amounts of money in preventive care, trained doctors to look for the condition. As doctors made more diagnoses, patient advocacy groups sprouted up to demand government research, which further heightened doctor awareness.

Green attended medical school in the 1970s in Sydney, where the education system has ties to England’s. “In Australia,” he says, “celiac was a part of our everyday thinking.”

So when Green arrived in the United States for a research fellowship at Harvard Medical School in 1976, he was shocked to discover that U.S. physicians still regarded celiac disease as a rare disorder that mainly struck youngsters. “In the research setting,” he says, “no one ever talked about celiac disease because there were no opportunities to study it.” And among clinicians, a cycle of ignorance had taken root: Doctors rarely met anybody who’d been diagnosed with celiac, so they continued to regard it as a medical oddity not worth learning about.

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