Celiac disease often goes undiagnosed, study finds
February 11, 2003
BY JIM RITTER HEALTH REPORTER
Mark Achler didn't know his body wasn't designed to consume a long list of
common foods and drinks, ranging from bread to beer.
Achler has celiac disease, a reaction to eating a protein called gluten
found in wheat, barley, rye and many processed foods. He
blamed his fatigue and bloating on the stress of his job and two kids.
He finally was tested for celiac disease after doctors diagnosed the
disorder in his 2-year-old daughter, Sarah, who had been losing
weight.
"Once I went on a gluten-free diet, I
felt great," he said.
Doctors often fail to diagnose celiac
disease partly because it has been
considered rare. But a study published
Monday found the disorder affects 1 in 133
Americans. Since only about 1 in every
4,700 Americans has been diagnosed,
that means about 97 percent of cases go
undetected, researchers said.
"The degree of awareness in the medical
community is very poor," said University
of Chicago researcher Dr. Stefano
Guandalini, a co-author of the study.
The study was headed by University of
Maryland researchers and included the U.
of C. and other centers. It was
published in the Archives of Internal Medicine and
funded, in part, by celiac patients and
companies that make celiac screening
tests.
The study is the largest of its kind in
the United States. To determine the
prevalence of the disease, researchers
took blood samples from 13,145 people. If
a subject tested positive, researchers
confirmed the diagnosis with a biopsy of the
small intestine.
The study found that 1 of 22 people who
have close relatives with celiac also have
the disease. Among those with no family
history or other risk factors, 1 in 133
have the disease.
Celiac disease damages the lining of
the small intestine so food isn't property
absorbed. Symptoms include bloating,
weight loss, weakness, fatigue, unusually
foul smelling stool, anemia, gas and
delayed growth.
There's indirect evidence celiac disease can lead to Type 1 diabetes and
osteoporosis.
But it's not easy to avoid gluten. Guandalini said that among those who try,
about 30 percent quit the gluten-free diet, 30 percent
cheat occasionally and only 40 percent stick to it rigorously.
Achler and his daughter, who live in Deerfield, are among those disciplined
enough to stick to the diet. Achler said he misses eating
such foods as spaghetti, bread and beer. "But there are a lot worse things
in life," he said.
Sarah, now 14, said she wonders what it would be like to eat pizza and other
foods her friends enjoy. But she knows that if she eats
gluten, she will spend the next three hours doubled up with abdominal pain.
For more information, call the U. of C. Celiac Disease Program, (773)
702-7593.
