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."

How Much Can We Draw From This Study?

But, is celiac disease truly more common of late, or are doctors and the media merely doing a better job of testing and raising awareness?

Dr. Alessio Fasano, who leads The University of Maryland Center for Celiac Research, calls the study "very important" and says it confirms what has been documented in other studies in Europe, however, he also expressed concern with its accuracy due to the sampling population.

"This paper has tremendous limitations. One is that because of the design and the population they have available for the study -- the Air Force -- there were only males and definitely this is not representative of the population," said Fasano. "Two, unfortunately, this is a cross sectional study. You take a snap shot in 1950 and then you take a snapshot today and hope its representative of the true situation of the general population. Ideally, to do a study like this you would like to have the same people. Let's say 5,000 people from 1950 to follow over time."

Fasano, who is preparing to publish a study which supports the notion that the disease's prevalence is changing, and in fact appears to be largely related to the environment, also cautions that there could be outside factors that were different in the 1950s.

"Today we work an average of 40 hours a week; at that time we worked 80 hours a week. Today we mainly work by sitting on a chair, at that time we mainly worked by sweating... Nevertheless, this paper is telling us two important messages: like most autoimmune diseases, celiac disease is increasing in prevalence most likely, and two, that if you are not treated, you may have problems in terms of mortality."

Murray also acknowledged that the study's sampling population was limited, and went on to add that his paper is part of a series of studies on celiac disease, which are funded by the National Institutes of Health.

What's the Explanation?

It is not known at this time why celiac disease appears to be on the rise.

"We think that immune disorders have all become more common in the last 50 years and one of the common explanations is what they call the hygiene hypothesis," Murray said. "We're living in a cleaned environment, but maybe our immune system has less to do and then it starts turning on itself, and in this case, turning on gluten.

Others suggest the increase could be due to changes in the way wheat is grown and processed or the influx of processed foods in the American diet.

Marion Nestle, author of the book "What to Eat" and professor of nutrition, food studies, and public health at New York University, says gluten intolerance is becoming more commonplace because of better diagnosis.

"The word is out that this is a real problem so people are getting diagnosed," Nestle told ABC News. "It's only recently that tests have become available that pin down sensitivity to specific wheat proteins and demonstrate conclusively that eating those proteins causes intestinal villi to flatten out. Before the tests, it was difficult to know whether the problem was a result of eating wheat or of something else. "

Increasing Awareness for Celiac Disease

"My second week after being diagnosed, I told someone I had celiac and they actually thought that I had an STD. It was so embarrassing," Maltin remembers. "Nothing was marked gluten-free at the grocery, it was really hard to find food ... Even thinking back five or six years ago, my doctor had never diagnosed anyone with celiac. He didn't even want to test me for it, and now he tests everyone for it."

Celiac disease can be treated simply by adhering to a gluten-free diet. Today, doctors, grocery stores and restaurants are becoming increasingly familiar with the autoimmune disease. Chains like Outback Steakhouse and Maggiano's Little Italy are catering to gluten- free diets, and mainstream manufacturers like General Mills are offering options for celiacs, such as a gluten-free version of its Chex cereal and Betty Crocker baking mixes.

Maltin is now the food and lifestyle editor for "Delight Magazine," a new publication devoted to gluten-free living.

Normalizing Celiac Disease

"The really cool thing about 'Delight Magazine' is that its making celiac disease and gluten intolerance normal. It's teaching people who can't eat certain things how to live normally," said Maltin, who expects the magazine to hit Barnes and Noble and Borders in August and is pushing to network with hospitals and doctors offices across the country.

Part of the reason increased awareness for the condition is important is because celiac disease can be difficult to diagnose. The symptoms are vague and wide-ranging from abdominal pain and bloating, to joint pain and muscle aches, as well as depression and anemia.

For an accurate diagnosis, one must have a blood test to screen for the presence of specific antibodies in addition to a biopsy of the intestine, before adhering to a gluten free diet. There are also new home diagnostic tests available for preliminary screening.

"The general population needs to be aware of celiac," said Murray. "If someone thinks they have the disease, they need to be tested for it before they change their diet because if they change the diet first, the blood tests and even the biopsies can become negative."

Cheryl Harris, a registered dietician and nutritionist in Alexandria, Va. can attest to the importance of a true diagnosis.

"I was one of the many people who went off gluten for a long time," said Harris, who has been gluten-free for five years. "I tried a gluten-free diet and it was kind of like flicking a switch, I was human again. Now, I can't go back, I'm a presumptive celiac but not technically diagnosed."

Harris, who got her degree less than ten years ago, said she has seen a drastic increase in awareness in the medical community during her time practicing.

"When I was being trained as a nutritionist, I was told one in 10,000 have celiac and that I would not have to deal with the disease, sort of like 'maybe you'll see a unicorn, maybe you'll see a person with celiac.'"

If future studies prove to verify the Mayo Clinic's findings, the medical community and food industry will have a lot of catching up to do.

The author of this article was diagnosed with celiac disease in 2004.