Celiac disease

Sue Shouldis of Middletown, MD, age 61, began to see the humor in what she'd been through after she started feeling better. A mysterious, debilitating illness crept in and stole her health, her job as a legal assistant and her satisfying life in Florida. In retrospect, though, it seemed kind of funny that food had caused her body to attack itself. So she wrote a poem:

Oh, Bread! Bless thy white glutinous face
Savior of the human race
Staff of life you're said to be
Oh, Bread, methinks you're killing me!

Shouldis has celiac disease, a highly variable condition that's also called sprue or celiac sprue. Celiac is vastly under-diagnosed; 95 percent of Americans who have it have no clue that's what ails them. It can cause anything from "nervous stomach" to impaired brain function. There is no typical case; it can look like 1,000 other conditions. A National Institutes of Health consensus report says celiac affects up to 1 in every 100 people in the U.S. Some are as sick as Shouldis was; others feel only vaguely unwell.

The Who, What and Why of Celiac Disease

Celiac, which affects more women than men, is an autoimmune condition. It inflames the villi, tiny fingerlike projections that blanket the lining of the small intestine and absorb nutrients into the bloodstream. This inflammation is triggered by gluten, a protein found in wheat, rye and barley. (Gluten is a technically incorrect but more convenient term than the scientific names: wheat gliadin, rye secalin and barley hordein.) Daily irritation from breakfast toast, lunchtime sandwiches and less obvious gluten sources like soy sauce and beer damages a sufferer's villi. The resulting atrophy creates nutritional deficits that worsen with time. Celiac is, essentially, a disease of starvation.

Celiac disease symptoms don't necessarily indicate degree of intestinal damage. Peter H. R. Green, M.D., director of the Celiac Disease Center at Columbia University and author of "Celiac Disease: A Hidden Epidemic" (HarperCollins), says that "studies show the majority of patients do not have classic celiac disease, but a silent presentation with few or no GI symptoms."

Testing, Testing

If you test positive for IgA endomysial antibody, you almost certainly have celiac disease. But that blood test is expensive. The less pricey test for IgA tissue transglutaminase picks up a key celiac marker but also registers positive for other conditions. Screens for IgA and IgG antigliadin antibodies are falling out of favor (too many false positives and false negatives). The gold standard? A biopsy of the small intestine, done by a gastroenterologist who knows where to look.

Treatment of Celiac Disease

Improvement in symptoms begins within days of starting the gluten-free diet. Complete healing of the small intestine, meaning the villi are intact and working, usually occurs in 3-6 months, although it may take up to 2 years in older persons.

Initial treatment

When celiac disease is diagnosed, you should immediately adopt a strict gluten-free diet. Eating even the smallest amount of gluten can cause symptoms such as weight loss

and diarrhea. You may be advised to temporarily avoid milk or milk products until your intestine heals, at which time you usually can gradually reintroduce them.