Why Eat Without Wheat?
Those with celiac disease have no choice.
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For Jax Lowell and some three million others like her, bread is not a necessity of life but very nearly poison. Lowell has celiac disease, a lifelong condition associated with an immune reaction to specific gluten proteins found in wheat, rye, barley and derivatives like oats.
A writer and fast-talking native New Yorker who now lives locally, Lowell spent years seeking medical advice, eventually dropping to 90 pounds and suffering two bone fractures from a lack of calcium. “The smart money was on lymphoma,” says Lowell of one faulty diagnosis.
CD is an autoimmune disorder that causes the immune system to go haywire and attack the body’s own tissues. Most patients have a family history of the disease. They also might have a family member with a similarly classified illness such as Type 1 diabetes, thyroid disease, inflammatory bowel disease, rheumatoid arthritis or multiple sclerosis.
Celiac disease is one of the most commonly underdiagnosed conditions in the United States, largely because its outward signs—severe weight loss, persistent indigestion and chronic diarrhea—appear only after the small intestine is damaged and the body can no longer absorb nutrients. CD affects the gastrointestinal tract, skin and joints, along with the reproductive and endocrine systems.
For now, treatment doesn’t come in the form of any pill or prescribed therapy. And those who seek out a diagnosis often get to that point with the help of a fleet of specialists.
As a research topic, celiac disease has become the next best thing since, well, sliced bread. Central to the hype is the way “dormant” genes are triggered into action—and how the body’s natural defenses are vulnerable to external environmental attacks.
University of Maryland researcher Alessio Fasano was the first to identify a mysterious human protein called zonulin, which CD sufferers have in abundance. Fasano published his findings last fall, prompting some experts to tout zonulin as the “molecule of the century” for its profound effect on the protective lining of the intestines in CD patients and its potential involvement in the gateway systems of other parts of the body.
Larazotide, a new drug used to block zonulin, is in the initial stages of human trials. And more research could lead to better treatments for everything from allergies and diabetes to heart attacks, strokes and cancer.
That’s the long-range view. A more pressing issue is the emergence of late-onset celiac disease, in which those who once tolerated gluten products suddenly develop an intolerance—and may not be aware of it. “More and more people are showing no symptoms at all,” says Keith Laskin, a gastroenterologist and the director of Paoli Hospital’s new Celiac Center. “Or the symptoms they do show are often confused with other illnesses like irritable bowel syndrome, acid reflux, even lupus.”
Paoli’s new center had its grand opening ceremony in March, with Fasano as the keynote speaker. Prior to that, Laskin had long been advising patients in a way that echoes the Celiac Disease Foundation’s slogan: “Are You the One?” The group’s awareness campaign points to the recent finding that CD affects 1 percent of the U.S. population.

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