Poll: Who Knows More about Celiac Disease - Patients or Doctors?
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Jun 10 2011

Poll: Who Knows More about Celiac Disease – Patients or Doctors?

In the U.S., it’s much more common for patients to know more about celiac disease than the average doctor that tests them for it.  The exception to the rule is when you’re referring to patients that are fortunate enough to have doctors that specialize in the condition.  Until there is a therapeutic treatment for the condition, this trend continue.

I’ve met a few people who were lucky enough to be treated by a celiac specialist or a doctor that otherwise knows the ins and outs of the condition.  However, nine times out of ten, a celiac patient gets very little help, if any, from the doctor that tells them to follow the gluten-free diet due to their condition.  Many doctors tell their patients to go research the gluten-free diet on the ineternet.

In my case, the doctor (whose face I’m sure was red from embarrassment when telling me I had a condition he’d previously said I could not possibly have) who diagnosed me said “you can eat rice, corn and potatoes” and hung up.  I was in a state of shock.  Not because I’d just been told that I had celiac (my blood work was positive so the biopsy results were not a surprise), but because the doctor who called with the news didn’t have a clue about how to help me figure out where to go for help.

It was only later that I’d find out my experience was typical amongst newly diagnosed celiac patients in the U.S.  Please vote in our informal poll below to see if five years has made a difference in who knows more about celiac disease in the U.S. – doctors or patients.

 

Article Written by:

Tiffany is considered a gluten-free advocate as well as the most discriminating gluten-free diner around. Her goal is to help others learn that there is life after a celiac diagnosis. Gluten-free dining and travel are two of her favorite things to do. Tiffany is a contributing writer and the Advertising Manager at "Delight gluten free" magazine. Check out her local blog, Gluten-Free Atlanta, for tips and tricks about living gluten-free in the ATL! Follow Tiffany on Twitter!

Comments

  1. Barb says:

    Actually, my doctor is very versed in celiac because of something I did for him. I belong to our local CSA chapter and our group hosted the national convention two years ago. CSA has created kits that teach family doctors about celiac. I purchased one and gave it to my doctor. Recently, he shared with me that his son is now on a gf diet. He read about the behavior problems that gluten sensitivity can cause in children. Recognizing the behaviors in his son, he started him on a gluten free diet and it has been very successful.

  2. Cindy says:

    My experience was much like yours, Tiffany. I pretty much had to self-diagnose first; then asked my doctor to perform the tests based on my suspicions. When the blood tests came back positive, a nurse called me, and the only guidance I got was, “just don’t eat anything with wheat in it anymore”. No further instructions, no recommendation for further testing or follow-up. Nothing. Since my younger sister had been diagnosed with celiac a few months earlier, she was my first, best source of info at that point. . Later on, my doctor made mention that, when she was in medical school, they were told that they “might” see one or two cases of celiac their entire careers, because it was so “rare”; so it’s no wonder they know so little about it! The only way that kind of ignorance will change is in three ways: a greater emphasis on celiac in medical school as a viable, increasingly common condition; continued education of doctors by their celiac patients; and/or FDA approval of a medicine to treat it — and then the whole world will know about it, because the drug company that patents the drug will make sure of it in order to increase their profits!

  3. Tiffany Janes says:

    Way to go Barb and Cindy! I wrote a letter to the jerk that dx’d me letting him know where to learn more about celiac testing and the diet. I also tried to educate my primary care doc after I was dx’d. I showed Peter Green’s book to her during a routine check up and she wrote the name of it down. Not sure if she ever read it, but today, two of her own sisters are living gluten-free. One is dx’d with celiac and the other had inconclusive tests, but feels much better on the gluten-free diet. Every little or big thing we do to promote awareness helps not only us – but everyone who comes behind us 😉

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