Skulls in the Stars

The New York Times on celiac disease


Via my postdoc advisor (who has been suggesting enough good stuff lately that I should probably just turn the blog over to him), The New York Times has posted a very nice article on living with celiac disease, “The Expense of Eating with Celiac Disease.”  A sample:

Celiac disease damages the lining of the small intestine, making it difficult for the body to absorb nutrients. Victims may suffer from mild to serious malnutrition and a host of health problems, including anemia, low bone density and infertility. Celiac affects one out of 100 people in the United States, but a majority of those don’t know they have the disease, said Dr. Joseph A. Murray, a gastroenterologist at the Mayo Clinic in Minnesota who has been studying the disease for two decades. The disease can be detected by a simple blood test, followed by an endoscopy to check for damage to the small intestine.

Seven years after receiving his diagnosis, Mr. Oram, who is married and has one daughter, is symptom-free, but the cost of staying that way is high. That’s because the treatment for celiac does not come in the form of a pill that will be reimbursed or subsidized by an insurer. The treatment is to avoid eating products containing gluten. And gluten-free versions of products like bread, pizza and crackers are nearly three times as expensive as regular products, according to a study conducted by the Celiac Disease Center at Columbia University.

The article contains quite a few money-saving tips for those trying to live gluten-free; it also hits upon most of the important facts I’ve learned about celiac since being diagnosed with it last year.  Anemia is an important thing to be tested for: I’ve recently been diagnosed with mild anemia (h/t The Wife, who also suffers) that almost certainly comes from the celiac, and is almost certainly responsible for both my low energy level over the past few years and my quite serious restless leg syndrome.  I’m now taking iron supplements to compensate, and things have improved significantly.

The article also does a very good job indirectly pointing out how health care reform is important for the diagnosis and treatment of celiac:

Unfortunately for celiac patients, the extra cost of a special diet is not reimbursed by health care plans. Nor do most policies pay for trips to a dietitian to receive nutritional guidance.

In Britain, by contrast, patients found to have celiac disease are prescribed gluten-free products. In Italy, sufferers are given a stipend to spend on gluten-free food.

Some doctors blame drug makers, in part, for the lack of awareness and the lack of support. “The drug makers have not been interested in celiac because, until very recently, there have been no medications to treat it,” said Dr. Peter Green, director of the Celiac Disease Center at Columbia University. “And since drug makers are responsible for so much of the education that doctors receive, the medical community is largely unaware of the disease.”

In short, countries with national health care actually pay to help cover the costs of living with celiac, for which no drug treatment is available.  Perhaps more important, it suggests that the drug manufacturers have a strong influence in driving the way doctors treat, or don’t treat, diseases such as celiac.  If your disease is not one the manufacturers are interested in, it is less likely that you’ll be diagnosed and treated properly (though, I should emphasize, not through the fault of the doctors).  My own case is anecdotal evidence to this effect: I was the one, at The Wife’s urging, to ask my doctor to test me for celiac.

In any case, the article is well-worth a read.