Friendly fire: gluten intolerance is surprisingly hard to identify

In times of war, when people are accidentally killed by their allies, it's known as "friendly fire." Autoimmune disease is similar in that one's own immune system can misfire and wreak havoc on any one of a number of bodily systems.

Celiac disease--also known as celiac spree, gluten sensitive enteropathy (GSE) or gluten intolerance--is one such condition.

In celiac disease, the immune system targets gluten, a protein found in wheat, rye and barley. When gluten is ingested, the immune system reacts to it as if it were a pathogen, attacking it inside the small intestine. The collateral damage of this attack includes the villi--tiny, hair-like projections that absorb nutrients. When the villi are damaged, nutrients can't be absorbed, and malnutrition becomes a risk.

While this seems fairly straightforward, gluten intolerance can be difficult to diagnose because it presents itself as a number of different conditions, including irritable bowel syndrome, Crohn's disease, diverticulitis, or even chronic fatigue syndrome or depression, according to the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK), a branch of the National Institutes of Health (NIH).

Prevalence

Perhaps because it is difficult to diagnose, celiac disease was believed to be uncommon in the United States until recently. In February 2003, Alessio Fasano, MD, and a team from the University of Maryland, Baltimore, published evidence in the Archives of Internal Medicine suggesting that celiac disease is more prevalent than once thought. Their study of 13,145 subjects indicated that 1 in 133 people suffers from the condition, and because it is a genetic disorder, it is much more common in those who have first- and second-degree relatives who also have it.

According to Fasano, this finding was a "storm" released onto the scientific community. "[T]here were two key factors," Fasano explains. "For each individual diagnosed, there were roughly another 50 undiagnosed. And second, the lag between the onset of the symptoms and the time of diagnosis was roughly 12-13 years. These were two statements that really prompted the scientific and medical communities to regroup and reconsider."

After Fasano's research was released, the NIH gathered experts to discuss celiac disease. The panel agreed that celiac disease is highly underdiagnosed and occurs in nearly 3 million Americans--10 times higher than previous estimates. In addition, the panel concluded that the key to earlier diagnosis and better patient outcomes is increasing physician awareness of the different manifestations gluten intolerance.

First Steps

There may one day be a way to alter the genetic component of celiac disease, but for now, the only way to improve one's quality of life is to avoid gluten completely.

"My personal advice, once the diagnosis is made, is to sit down with a knowledgeable nutritionist and develop a strategy," Fasano says. "As with everything in life, you have to learn about it. Once you learn about it, you call live with it. The worst thing a celiac disease patient call do is withdraw from life and put him- or herself into a bubble."

Perhaps the most promising aspect of celiac disease is that if it is diagnosed early enough--and a gluten-free diet is initiated--symptoms dissipate and intestinal damage can heal.

"This is wily I love my job as a gastroenterologist," Fasano says. "The beauty, of this disease once you go on a gluten-free diet, is that I can't tell if you're sick. You become indistinguishable from other people."

Avoiding Gluten

To lead a gluten-free life, avoid all products containing wheat, rye and barley. This includes most pastas, breads and cereals, but it also applies to some food additives, processed foods, medicines, cosmetics and even envelope glue. Because of the numerous places gluten is used, the trickiest part of leading a gluten-free lifestyle is knowing how to avoid the ubiquitous protein.

Because gluten is so far-reaching, reading labels is a necessity for celiac patients. "If ingredients are not itemized, you may want to check with the manufacturer," NIDDK advises. "With practice, screening for gluten becomes second nature."

Calls to manufacturers, however, might become less necessary as of January 2006, when new food labeling laws are scheduled to take effect. In August 2004, the US Food and Drug Administration (FDA) recognized gluten as a food allergen and amended the Food Allergen Labeling and Consumer Protection Act of 2004 to encompass additives, colors and proteins derived from any of the major food allergens, one of which happens to be wheat.

In addition, the FDA is working on a proposed rule to define and allow use of the term "gluten-free" on food labels. The proposed law is supposed to be released no later than August 2006, with the final rule due no later than August 2008.

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