Last week (erm, two posts ago…gosh, I’ve been lazy) I asked why doctors can’t just talk to each other. I wondered if all my docs could have put their heads together and figured me out faster. The consensus was “maybe, maybe not.”
Even though celiac disease is associated with a huge range of symptoms affecting virtually every system and function of the body, with implications going well beyond the gastrointestinal, it’s GI doctors who are overwhelmingly responsible for diagnosing it. Other doctors are less likely to be trained in recognizing it, and apparently also less likely to care. (Back in February, Jess of The Patient Celiac posted a selection of anonymous comments on an online doctors forum that included this gem: “Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”)
So although in an ideal world, any of my doctors could have diagnosed me separately or in collaboration (or a supercomputer could have), in the real world it was pretty much down to the one who specialized in intestines to diagnose me.
But she didn’t.
I saw a gastrointestinal doctor for the first time back in December/January of 2011 after half a year of symptoms (my insurance made it hard to see a doctor earlier, since I was in college out of state). In that half a year, I’d had an emergency room visit, I’d tried a strict low-FODMAP diet with no results (besides an initial placebo high that wore off after a week), and I’d worried a LOT.
The GI doc did a colonoscopy but—inexplicably—not an endoscopy or at the very least a blood test for celiac disease. She wasn’t interested in talking about food (turfing it to the dietitian guys, I suppose, though she didn’t set me up with one), and she sent me on my way with OTC meds and all but a pat on the head.
Since I first got my positive bloodwork results, even before I had a fully confirmed diagnosis of celiac disease, I’ve been toying with the idea of calling or writing to this doctor. Now that it’s nearly May—celiac awareness month, as you may be (heh) aware—it seems like a good time to follow through.
What I want to accomplish here is:
1) Tell her my story
2) Understand why she didn’t test me for celiac disease (or, if she did without my being aware, why she never contacted me with the results)
3) Let her know, if she doesn’t, that my particular symptoms are commonly associated with celiac disease
4) Encourage her to test for celiac disease before diagnosing IBS in the future.
What I don’t want to do is:
1) Come off as whiny
2) Come off as condescending
3) Offend her sense of her own expertise
4) Be immediately dismissed
5) Threaten a lawsuit.
Unfortunately, I’m a whiny, condescending, offensive, easily dismissed person prone to making accidental threats. So I need your help!
Have you ever written this kind of letter? Whether or not you have, do you have any tips for me? Any specific things I should say or not say?
Is it better to do this in writing or over the phone (in your opinion or experience)?
Do you feel this kind of patient-to-doctor education is possible and worthwhile? What are other ways to go about it?