Celiac Moves into the Spotlight
The change in the perception about the prevalence of the disease in the United States came about, in part, as the result of the work of Peter Green, M.D., director of the Celiac Disease Center at CUMC, and a handful of other celiac experts around the country.
"During my training in Australia I was taught that celiac disease was common," Dr. Green says. "So when I came here I wondered where all the American cases were. Physicians don't diagnose diseases that they don't think exist."Despite the new awareness of the prevalence of celiac disease, an NIH consensus panel that convened in June found it is still greatly underdiagnosed. Thus, in addition to taking care of patients, Dr. Green and other clinicians at CUMC's Celiac Center travel around the country to educate doctors about the full scope of the disease. "The rate of diagnosis is much greater in other parts of the world, but even in those countries, the majority of people with the disease remain undiagnosed because celiac masquerades as many different medical problems," Dr. Green says.
In the United States, Dr. Green's research has shown that it takes an average of 11 years before a patient with celiac is correctly diagnosed. That is a number Dr. Green and his colleagues would like to see significantly reduced because, if left untreated, patients with the disease have a mortality rate two to four times greater than the general population, mainly because of an increased risk of non-Hodgkin's lymphoma.
The classic case of celiac disease, taught in medical schools, is of a child with diarrhea, abdominal bloating, and pain. But the complete picture is much more complicated. Many people don't develop the disease until adulthood. And most of these adults have a wide array of nonclassical symptoms. They may have constipation, instead of diarrhea. They may have an intensely itchy skin disease, dermatitis herpetiformis, that only occurs in patients with celiac disease. Or, their only complaint may be a tingling feeling in the hands and feet due to a neuropathy. Still other patients have no symptoms at all and only discover they have celiac when another family member's diagnosis prompts screening for the disease.
Whatever the symptoms, the cause of celiac remains the same gluten, a protein found in wheat, rye, and barley that sets off the patient's immune system on a misguided attack of the villi of the small intestine.
"Sometimes the damage is so severe that it is quite obvious to the naked eye at endoscopy," says Hal Winfield, R.N., director of educational programs at the center.Without the villi, the intestine cannot absorb nutrients properly and patients sometimes suffer from weight loss, anemia and osteoporosis due to malnourishment.
Today, the only option for these patients is to go on a gluten-free diet, which eventually restores their villi and reduces their risk of cancer. Anne Roland Lee, the center's nutritionist and one of the country's few experts in celiac nutrition, helps new patients adapt to a gluten-free life style.
"New patients tend to fall into two camps," she says. "Either they underestimate how much gluten is out there, and think they only have to cut out bread and pasta. Or, they've taken a look at food labels and think there's nothing in the world left for them to eat."
Apart from the usual suspects bread, pasta, and beer gluten shows up in an astounding array of food products, such as processed American cheese, candy, soy sauce (wheat flour is the second ingredient), mouthwash, and even some medications.
Once patients have mastered their new diets which includes grains like quinoa and teff at home, Ms. Roland Lee also prepares them for the outside world of restaurants and school cafeterias. "Think about the last time you went to a restaurant. You probably didn't have to worry about the type of sauce or pasta or croutons being served. But one of our researchers found that as little as one-eighth of a teaspoon of flour, about the size of a pinky nail, causes intestinal damage."
"The good thing, though, is that it's easy to avoid gluten; a steak and potato dinner, for example, is gluten free. It doesn't mean you can't go out and live, it just takes a little planning," she says.
Now that celiac disease is recognized as common, Dr. Green says more interest is developing in drug therapy.
"Research has made major strides lately," he says. "We've learned that the disease results when T cells launch an inappropriate attack against gluten. The more we learn about the immunological mechanism of the disease, the closer we'll get to finding a way to treat it with medications in addition to the stringent diet."