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.

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5 Responses to The New York Times on celiac disease

  1. cevenol says:

    it is great that the NYT sucgha renowned journal highlight problems associated with CD. I am a scientist and diagnosed with CD 4years ago folowing small bowell carcinoma….yet I survived
    in france the health service reimbursed up to 45€ of GF food per month, that not plenty but better than nothing. hopefully, the EC regulation force now to clearly label food allergen.
    cheers
    cevenol

  2. The Wife says:

    Honey – I think you should point out that you were MISdiagnosed with IBS. I’m sure there are alot of people out there misdiagnosed as well.

    What I think should also be pointed out is that instead of giving the patients that suffer from this another PILL to mask the symptoms, the cure is simply adjusting your diet. While that is expensive and not covered by insurance it is treating the cause of you symptoms instead. If doctors spent more time treating the source of the illness instead of handing out another prescription the overall health of the average American would be much better. Unfortunately, we have American’s who WANT a pill and don’t want to make the hard choices to eat a salad instead of a Big Mac and we have pharmaceutical companies in bed with the insurance companies and they certainly don’t want to stop creating more drugs (that don’t work and the side effects may kill you.) GRRRR. This whole topic irritates me.

  3. McHarris says:

    I am both Gluten free and Dairy free, with issues from natural food chemicals, Salicylates, Soy, Amines and Glutimates.
    I have been eating Gf/Df for 18 months now, and once I had learned NOT to shop in the supermarket isles, but to stick to the perimiter outside isles, purchasing mostly fresh ingredients, fruits veggetables etc, going to a regular butcher fr fresh meats which have not been cryovacked, and buying fresh fish etc, I discovered I could eat healthy, cook well d manage the expense easilly. When I was cruising specialty sections, looking for manufactured gluten free, dairy free soy free foods, I found my grocery bill to be climbing extremely high.
    My advice? Relearn to home cook- using fresh ingredients, save money and eat well.

    • The Wife says:

      McHarris – thanks for the advice. I have insulin resistance along with hypothyroidism and anemia. I try to stay away from the processed food aisles as much as possible because those foods don’t help my health issues at all. We are getting better at cooking at home. It takes practice and time, but we are getting there.

  4. McHarris says:

    I too and my DH as well are both diagnosed type 2 (insulin resistant) diabetics. It has taken a few years, slowly – ever slowly, but now no doctor will say we are diabetic…… our early morning A1C readings are in the low 5’s, and all this has been done, as I said, very slowly with diet. Not the diet prescribed by the Australian or the US diabetic associations….. who still proclaim loudly to eat your grains and cut out your fats…….. Dr. Bernstein (google him) has some wonderful information and a great book which you can purchase. It has worked for us, we just needed to tweak things being gluten, soy, dairy free etc.

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