"They followed the first-degree relatives because it is well known that one-in-12 relatives of a celiac disease patient will have the disease," says one celiac disease expert, Dr. Karoly Horvath, the director of the Pediatric Gastrointestinal & Nutrition Laboratory at the University of Maryland in Baltimore.
"And it's also known that a lot of these relatives are undiagnosed."
People with this disease must stay on gluten-free diets or risk damaging their small intestine and losing the ability to absorb nutrients.The study found that the death rate for those who failed to stick to a gluten-free diet was six times higher than for those who had.
An estimated one-in-4 ,700 Americans has been diagnosed with celiac disease.
Often the disease has no symptoms, Karoly
says."What happens with celiac disease is that it progresses very slowly.It's the first part of the 20 feet of intestine that absorbs nutrients and the disease progresses slowly down the length of the intestine.And if the lower intestine can compensate, which it does for a while, then there's no evident symptoms."
The study found the death rate was 2.6 times higher among those whose diagnosis was delayed for a year, and 3.8 times higher for those who weren't diagnosed for 10 years.
"The message in this study is that the more delayed the diagnosis of the disease, the more increased the mortality rate," Karoly
says."And there was a perception in the medical community in the U.S. that there was no such thing as celiac disease in this country, though that's changing now."
"We did a survey in the mid-90's asking celiac patients when they had their first symptoms and when they were diagnosed with the disease," Karoly
explains."The gap was 12 years.The problem is that, while using the screening techniques for celiac disease is quite routine in Europe, it has yet to be recognized as widely in the U.S."
What To Do
For more information on celiac disease, see the Celiac Disease Foundation
or the National Institute of Diabetes and Digestive and Kidney Diseases
...SOURCES: Interviews with Elaine Monarch, executive director, Celiac Disease Foundation, Studio City, Calif.; Karoly Horvath, M.D., Ph.D., director, Pediatric Gastrointestinal and Nutrition Laboratory, University of Maryland, Baltimore; Aug. 4, 2001, The Lancet