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.
* What Can People with Celiac Disease Eat?
It can seem hard to construct a diet that allows no pasta, bread or pastry. But meat, fish, fruits and vegetables, beans, rice, corn and potatoes are all healthy choices.
Once a strict gluten-free diet is adopted, the villi almost always recover in six months to two years. Symptoms, from mental confusion to dark circles under the eyes, also vanish.
For more information, contact:
* University of Chicago Celiac Disease Program: call 773-702-7593 or visit celiacdisease.net
* Celiac Disease Center at Columbia University: call 212-342-4529 or visit celiacdiseasecenter.org
* Gluten Intolerance Group of North America: visit gluten.net
With an early diagnosis of celiac disease and adoption of a gluten-free diet, it's possible to halt your symptoms and prevent complications. So see you doctor if you suspect celiac disease. You'll be that much closer to feeling better.
Writer: Mary Brown
©REMEDY, Summer 2007
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