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Why Do Doctors Misdiagnose Celiac Disease?

Woman Doctor is Writing a Card of a Patient

It’s a darned good question, after all.  We doctors are supposed to be the experts in diagnosing, aren’t we? I’ve thought about this quite a bit.  First, because I’ve had a number of patients ask me questions like this—and other questions, like why didn’t their other doctors believe them….or, even why has their doctor never even HEARD of gluten sensitivity?!? Second, even though I’m a naturopathic physician, because I grew up in the “western medical world”, it seems as if I could perhaps get a handle on how some doctors think, explaining why they don’t think of celiac and gluten sensitivity, or why they dismiss symptoms of gluten sensitivity?

To start, I believe that the vast majority of physicians are trying to do their best to help their patients.  It’s not a sin of omission—they are doing the best they can with what they know, or think they know. A large part of the problem is the way most physicians are trained.  They are often trained to think that “common things happen commonly”—and, this is true. I had a woman come in with a rare respiratory infection.  I was able to help her, and she asked me why it took so long for her MDs to diagnose her. I told her that I wouldn’t have come to the real diagnosis any more quickly, because it WAS uncommon—I had the advantage of her MDs ruling out everything else! Though the incidence of celiac disease appears to be increasing—in the US, the rate of diagnosis has doubled since 19741, there are still many physicians out there trained when it was NOT so common. Celiac used to be much less common, and perhaps some of the older doctors aren’t as experienced with it —so it is likely that in the future, it may be diagnosed more quickly.

Another problem may be the “drug culture” we live in.  It is much easier—and some patients actually expect it—to be given a prescription or two to treat the symptoms, rather than find the cause.  Since many of the most common symptoms of celiac (diarrhea, cramping, weight loss, abdominal pain and bloating, fatigue) are what we would call “non-specific”—that is, they can indicate a whole range of problems and don’t point specifically to celiac or gluten-sensitivity, the diagnosis often becomes of ruling out something more common first.  And believe me, the list of things to rule out can be quite extensive.  So, sometimes the “easier” thing to do is to treat the symptoms and not the cause.  It is often easier to hand out an anti-diarrhea medicine or even to tell you “there’s nothing wrong”, “it’s all in your head” (have you heard that one?  My personal favorite.  I had a patient with migraines tell me her previous doctor had said that….duh!)

When it comes to gluten sensitivity—well, that’s a whole new ballgame.  Many doctors trained in previous decades don’t even believe in gluten sensitivity.  They didn’t study it in school, so of course, it’s not real. And those of us who DO know about it and treat it seriously….well, you know what we are! Naturopaths have been treating people for a long time based on diet and nutrition—the concept of someone developing a response to a food or an environmental toxin is not new to us.  And, the idea that people could be feeling ill without a specific lab marker is not new to us either.  But, to many physicians in the “mainstream”, it’s just another internet disease, and a sort of medical “fad”.

New ideas creep into medicine very slowly sometimes. And, when people use terms like allergies or intolerance—that means very specific things to doctors and it’s not what is going on in gluten sensitivity.  If the doctor has heard those terms used before with regards to gluten, there’s a chance they may ignore and dismiss the symptoms just because of the inexact terminology used.

So, what do you do if you think you may be gluten sensitive or have celiac’s and your doctor won’t listen? It’s a tough call, but try to educate them on gluten sensitivity/celiac disease (they can contact me if that is easier). You may have to “shop around” to find a doctor who is supportive—the good part is you can start by removing gluten from your diet—nothing proves a point better than a healthy patient!

1http://scienceblog.com/38955/rate-of-celiac-disease-is-growing/

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