Living With Celiac Disease: One Woman's Story

July 6, 2009— -- Migraines, skin irritation, seizures -- you name the symptom, Vanessa Maltin experienced it growing up.

"I was sick my entire life from when I was a little baby until I was 21 and got diagnosed with celiac disease," she said.

It has been five years since Maltin was diagnosed with celiac disease, a genetic, digestive disorder that affects both children and adults. People with celiac disease are unable to consume foods that contain gluten, a protein which is found in wheat, barely, rye and other grains. For these people, gluten sets off an autoimmune reaction that causes damage to the small intestine and in turn, prevents vitamins and nutrients from being absorbed.

"They thought I was faking having headaches and didn't want to go to school, but I was really in so much pain," said Maltin, who took prednisone, an anti-inflammatory steroid, for most of college and was forced to have a nurse come to her dorm room to administer tests through an intravenous line. "None of the medicines worked, no one could figure it out."

A new study conducted by the Mayo Clinic in Rochester, Minn., suggests celiac disease is almost five times more common today than it was 50 years ago -- and that if the disease goes undiagnosed, it is associated with nearly quadrupled mortality rates.

To obtain their findings, researchers tested blood samples gathered from military personnel at Warren Air Force Base in Wyo. between 1948 and 1954, and compared them with blood samples collected in recent years in Minn.

"Celiac disease is unusual, but it's no longer rare," says Dr. Joseph Murray, who led the study published in this month's Gastroenterology journal and attributes the increase in the disease to environmental factors. "It has to be a change in the environment because it's happened over 50 years and human genetics don't change that fast."

Celiac disease now affects nearly one percent of the U.S. population, Murray told ABC News, but the vast majority of people living with celiac disease, do not know they have it.

"We also have shown that undiagnosed or 'silent' celiac disease may have a significant impact on survival. The increasing prevalence, combined with the mortality impact, suggests celiac disease could be a significant public health issue," Murray says, suggesting someday it may be necessary to screen for the disease with the same frequency that doctors test blood pressure and cholesterol.

Maltin believes her family may have been a victim of "silent celiac" as well.

"My grandmother passed away about 15 years ago. She died of colon cancer and had symptoms of celiac her entire life," said Maltin. "We also have several cousins who passed away of cancer and obviously we can't go back and test them for the disease, but it's pretty likely that they had it, and if we had tested them back then, maybe we would know."