The public is out ahead of health care providers on Celiac Disease

(The following is my reply to New York Times Consults blog January 10, 2010 article by Dr. Sheila Crowe.)

Five months after being diagnosed with Celiac Disease (at the age of 59) one of the most baffling things about the way the medical community views this disease (and there are more than a few) continues to be the perverse insistence that people shouldn’t adopt a gluten-free diet on their own…that it might lead to things like: inability to get a “definitive” diagnosis (so eat gluten again for a while and then test if you want to…or not, by that time a “definitive diagnosis” is not the objective for most people- whose needs are the priority here?); greater expense (almost all foods as grown or raised are gluten-free – how have we reached the point in our view of “food” that we can only imagine mostly buying processed foods?); nutritional deficiencies (many if not most gluten-filled diets are already deficient for lots of reasons, anyone who starts paying close attention to what they eat is almost certainly going to be eating more nutritiously); that going on a gluten-free diet is a “life-long commitment”  (sure, but only as long as you want to keep feeling better, and eat a less health-damaging diet – and let’s be real here, you can quit the diet any time you want to… if you want to.  It’s like saying that “eating is a life-long commitment,” it’s a free country); and the amazing-to-me statement by Dr. Crowe that if someone diagnoses themself, “it may encourage family members to be screened for the disease, even though you may not really have it.”

Could I really have read that right??  That it might lead to MORE screening?  More use of a simple blood test (my insurer paid $98 for the comprehensive Celiac Panel) that could allow someone to discover they have Celiac Disease and to drastically improve their quality of life, and minimize more damage to their health, all with just a change in diet?  Then let’s hear it for people who take things into their own hands because they are tired of waiting for help from the medical community, or who have actually been turned down or belittled when they asked a health care provider whether they should be tested for Celiac Disease.  Why isn’t everyone being told about and screened for Celiac Disease?

I feel that the health care system failed me- for decades- by letting the profit-seeking pharmaceutical companies, device-makers, technology providers, etc., determine the primary course and priorities for health-care providers in this country.  I followed all the rules and they and the system let me down.

Even after decades of lactose-intolerance, some years with abdominal distention, eventual diagnosis with thyroid disease and then osteoporosis, no health care provider ever offered anything other than a new prescription.  Eventually, I decided to look into it myself, and it took me all of a 30-minute Google search to discover that I almost certainly had Celiac Disease (and yes, blood work and intestinal biopsy confirmed that – for the doctors.  I already knew it.)  I also was amazed to learn that there is a home test, the Biocard Celiac Home Test (blood test for TTA) that costs about $40, is very accurate and specific (although not as inclusive as lab testing, but a great start) and although for sale in Canada and Europe…is not for sale anywhere in the United States.

The public is way ahead of most health care providers in this country when it comes to Celiac Disease and other varieties of gluten-sensitivity.  Health care professionals had better figure out a way to catch up other than to criticize people who have decided to take responsibility for themselves by getting the help and information they need, even if they have to do it on their own.

Adventures in Health Care Land

One thing I have read recently (and I believe to be very much in evidence today) is that the health care system in the U.S. (even things we consider preventative) is largely driven by the drug industry; the things that get tested for, treated, etc. are things for which someone can make a profit. I recently learned (in spite of the health care system not because of it: armed with information gathered from the Internet I approached my own health care provider) that I have Celiac Disease. I have since been dismayed to learn that about 3 million people in the United States have this disease and 97% of these people have no idea they have it (studies indicate that 40% of people with the disease have NO symptoms at all) but will eventually have serious, and expensive-to-treat problems such as liver disease, lung disease, bone disease, cancers, or a whole bunch of other problems. My insurance company paid $98 for the blood work that diagnosed the disease and the completely-effective treatment is simply to follow a gluten-free diet (no wheat, barley or rye) that won’t cost anybody else anything. Why not screen everyone for this? Are there other things like this that could be screened for? Could the government set about identifying things like this (and widely disseminating information) that could be huge money-savers?

Have you been tested?