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.
"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,"