When it comes to diagnosing celiac disease, doctors have to become detectives.
With its broad range of symptoms, celiac is a master of disguise … first pretending to be one condition, then another.
In February, Collins Books released a definitive new guide to exploring this under diagnosed autoimmune disorder. "Celiac Disease: A Hidden Epidemic," by co-authors Dr. Peter H.R. Green and Rory Jones, offers the dual perspective of patient and doctor. While written for a consumer audience, there is much the professional can gain from the book considering the pervasive lack of awareness about this disease in the American culture.
Green, professor of clinical medicine at Columbia University College of Physicians and Surgeons and director of the Celiac Disease Center at Columbia, says that ultimately celiac isn't hard to diagnose … a simple blood test will put you on the right track … it just isn't considered.
Stripped down to its basics, celiac disease is a gluten intolerance. Gluten, found in wheat and certain other grains, constantly attacks the small intestine until it can no longer absorb nutrients efficiently. As malabsorption progresses, the disease becomes systemic and manifests itself in a variety of ways. While celiac can't be cured, it can be controlled with a gluten-free diet.
An Australian native, Green says an awareness level exists in other countries that you simply don't see in America.
"In the rest of the world, it's a commonly diagnosed condition," he notes. "You can get a gluten-free pizza anywhere in Australia … every packaged food in Brazil has 'gluten' or 'gluten-free' on it … ice cream stores in Buenos Aires list the gluten-free ice creams on a sign."
In America, however, he says you have to be a scientist just to read our food labels. Just this year has "wheat" been added to the food label, and it won't be until 2008 that the FDA will definitively designate items as "gluten-free."
"It's disgusting how far behind this country is," Green says. "The disease is under diagnosed and therefore the social services are not adequate."
He adds there are several reasons why America isn't cognizant of the celiac epidemic. First, he says, celiac has been considered to be a rare disease and one of childhood.
"Actually," he says, "it's a common disorder at any age."
Still, if not caught in early childhood, celiac is typically not considered an option later in life. Secondly, the very nature of celiac is that it presents with a broad panel of symptoms easily tied to other conditions, or worse, it doesn't "present" at all. Many patients spend years being asymptomatic.
Green also says that pharmaceutical companies are responsible for doing a great deal of physician education in this country. However, since there is no drug attached to treating celiac, there is no strong education advocate behind the disease that is strictly controlled by diet. Finally, Green says that in his opinion, America has a particularly strong food lobby that has opposed labeling changes.
"So you can't blame doctors for missing the diagnosis when they're not educated about it," Green adds.
However, bringing celiac to the forefront of the American consciousness is an important mission because of the dire health repercussions of ignoring this disease.
Green says that on average malignancies are twice as likely for patients with celiac as for the general population. Of particular concern are thyroid cancer, adenocarcinoma of the small intestine, esophogeal cancer, lymphoma and melanomas.
Furthermore, patients with celiac will present with osteoporosis, irritable bowel syndrome, iron deficient anemia and various neurological problems. Associated disorders include Down Syndrome, insulin dependent diabetes, various liver diseases and epilepsy in childhood. Green urges doctors to delve deeper with patients who have these health issues.
"Find out why someone has osteoporosis," he urges, "not just, 'let's treat the osteoporosis.'"
Unlike other diseases and disorders, Green says celiac is not more prevalent in one ethnic group over another, although women are at higher risk than men of having the disease.
The good news is that getting on a gluten-free diet will eliminate celiac disease.
"It also takes away the added risk of getting cancer," Green says. "It takes the risk factor back to that of the normal population."
In our overweight society, a gluten-free diet has the added benefit of being a healthy diet filled with fresh vegetables, meats and fruits. Green says he advises patients to "eat naked," meaning avoid sauces, breading and marinades. This is particularly true in restaurants where it is difficult, if not virtually impossible, to truly ascertain how a meal is being prepared.
However, Green warns that physicians shouldn't go to the opposite extreme of where we currently stand by prescribing a gluten-free diet off the bat, as it is very restrictive. Furthermore, if you suspect celiac, it isn't advisable to suggest that patients try a gluten-free diet "for awhile." If it truly is celiac disease, the new diet is for life. If it isn't, then the physician needs to continue digging to find the root problem.
Luckily, celiac is reasonably easy to diagnose by simply ordering a celiac serology test followed by biopsy. The first-line indicator of celiac is a blood panel for IgA endomysial antibodies, IgA tissue transglutaminase, IgG tissue transglutaminase and total IgA antibodies (which will help identify in symptomatic patients who happen to be IgA deficient). If the blood tests are positive, the gold standard for diagnosis is endoscopy and biopsy.
In addition to the new book, physicians can find additional information on celiac disease at Columbia University's www.celiacdiseasecenter.org site, which includes a professional area.
