May 20, 2008 -- Most Americans who have celiac
disease probably don't know it.
A new study shows that the criteria used to diagnose the disorder may be too
stringent, leaving many people undiagnosed and untreated.
It is estimated that one in every 100 Americans may be affected by celiac
disease. But "only 5% of these people have ever been diagnosed," says Peter H.
Green, MD, professor of clinical medicine at Columbia University Medical School
in New York City.
Green moderated a news briefing to discuss the new research at Digestive
Disease Week 2008 in San Diego.
Also at the briefing, researchers reported early success in developing new
treatments for celiac disease.
People with celiac disease cannot tolerate gluten protein
found in wheat, rye, and barley products, such as many breads and cereals. They
must follow a strict gluten-free diet to control their symptoms, which can include diarrhea, weight
pain, anemia, and oral ulcerations.
When people with celiac disease eat foods containing gluten, their immune
system attacks the protein. This damages the intestinal lining, hampering the
ability to absorb vital nutrients from food and eventually leading to
Currently, a biopsy of the small intestine is considered the gold standard
for diagnosing celiac disease, Green says. Doctors look for
damage of the villi -- little finger-like protrusions in the small intestine
important for absorbing nutrients.
The biopsy is typically given if blood tests show you have certain antibodies that are
associated with celiac disease.
Biopsy May Miss Celiac Disease
The new study involved 145 patients suspected of having celiac disease. Of
those, 71 were positive on the antibody blood test. Of those, 48 met the
criteria for celiac disease on biopsy.
The remaining 23 patients were divided randomly into two groups. One group
was placed on a gluten-free diet, and the other continued eating a regular diet
that included gluten.
After one year, patients on the gluten-free diet were free of symptoms.
But symptoms worsened in people who continued to eat the regular diet. And
their intestinal linings showed signs of inflammation and deterioration.
The fact that they got worse shows they had celiac disease, says researcher
Markku Maki, MD, professor of pediatrics at the University of Tampere in
Plus, when these patients then eliminated gluten from their diet, their
symptoms got better and their intestinal lining healed, he tells WebMD.
Green says researchers are working on a better blood test to detect celiac
There are other reasons celiac disease is often missed, he adds. "It's a
problem of physician education, as doctors are taught it's a rare childhood
disease," he says. In fact, celiac disease can appear at any point in life.
Then, there's the fact that the symptoms are so varied. Patients may go to
one doctor for bloating and diarrhea, another for joint pain, and
another for unexplained anemia, and no one puts all the pieces of the puzzle
together, Green says.