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.