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Learning to Live With Celiac Disease

You may not know you have it, but celiac disease can rob the body of nutrients it needs to thrive.

Gluten-Free Choices

"It occurs in 1% of the population in this country, and less than 5% of this 1% are diagnosed," explains Green, who is also a professor of clinical medicine at the College of Physicians and Surgeons at Columbia University and an attending physician at the Columbia University Medical Center.

"This underdiagnosis leads to it being more difficult for patients when they finally do get diagnosed because there isn't all the availability of gluten-free products," he says.

"In other countries like Finland, 50% of people are diagnosed," he says. And gluten-free choices are more readily available. For example, an ice cream parlor in Buenos Aires will list gluten-free ice creams, and you can order a gluten-free Big Mac at McDonald's in Helsinki, Finland.

"In other parts of the world, people have been more hip and alert to celiac disease," adds Jonathan D. LaPook, MD, an associate clinical professor of medicine at Columbia University Medical Center. "They are just picking it up more and there are wheat signs on menus, so it's not a big deal to walk into a restaurant and say I have to be 'gluten-free.'"

Dangers of Misdiagnosis

Another roadblock in diagnosing celiac disease is that its symptoms can be vague -- even nonexistent, LaPook explains.

"When I was in medical school, we were told you couldn't miss [diagnosing celiac disease] if you tried, but now we know that a majority of cases are asymptomatic [have no symptoms] or have minor symptoms," he says. "It can be ipsy-pipsy, very subtle, [marked by] a little diarrhea and a little cramping; who doesn't have that?"

That's true, Green says. "The problem is that physicians have not recognized the disease and that is probably because patients don't have the classical presentation. The disease is considered to be very common but the physicians are taught that they have to have diarrhea to consider diagnosis, and that's not true; celiac disease is more a multisystem disorder."

For example, "our experience is that many kids that get diagnosed have got an alphabet soup diagnosis including attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), and other cognitive issues," he says.

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