Patty Dineen

The view from here

Posts Tagged ‘New York Times

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.


Judging by Gender

Attitudes towards professional women have changed over recent decades in America, but there are always reminders that many prejudices remain.  Laws have changed, but in many realms attitudes have not.


I read David Brooks op-ed piece in today’s New York Times, The Way We Live Now, with great disappointment.  Although superficially, Brooks seems to be acknowledging Supreme Court nominee Judge Sonia Sotomayor’s achievements up to this point in her life, he is really pointing out (admonishing?) things (negatives made to sound more negative for the fact that she is a female) that are far less often brought up in articles about high-achieving men: at a young age she lost a parent; she had a lot of mentors; she worked really hard; she smoked and drank a lot of coffee (would this really even be mentioned if we were examining a man as the next Supreme Court Justice?); her marriage ended in divorce; and yes, again, she worked really hard.


Brooks makes a point of saying that he isn’t just writing about a professional woman balancing aspects of her life (except that he is) and that the pressures he is referring to affect both women and men (except that, in that case, why point out the obvious now, and why use Judge Sotomayor as an example?)


The kind of thing David Brooks is doing is very subtle, and very potentially damaging, because it is a “read between the lines” attack on someone who has become successful the same way most people have– by working very hard and by learning from others who are willing to be helpful.  By delineating what it takes to rise to this point in her life, Brooks implies that there is something perverse about it (or by association, about the person), and oh yes, he bemoans that too many of us are subjected to these same pressures…sigh…isn’t life tough.  And, I almost forgot another “strain” (an odd choice of words until you remember he is writing about a woman) in Sotomayor’s life– she spends time with a lot of other “high achievers.” 

Written by dineenp

July 14, 2009 at 4:26 pm