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.”
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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?
Based on a Sprue Story 
Well, if I may, rather than a letter, why don’t you write it up as a Case Report. That kind of dispassionate tone may be what your former doctor is used to (that is, if she’s a responsible clinician who keeps up with the clinical literature…if not, then whatever you send may be destined for the round file). I know a person or two who could help with the formatting for that ;^)
Thank you! I’d be curious to see a formatting example of a case report; could you send me one?
As all the pieces of my gluten-issue-puzzle are falling into place, and my upcoming yearly physical is in May – I’ll be writing a “letter” with the “here are all of the symptoms that were always ignored or treated individually and never seen as a whole… and by the way – even IF my blood test results were negative, I KNOW there is a gluten problem because of all of these symptoms and how much better I feel not eating gluten.”
How is that for a run-on sentence?
As cav513 said, maybe a Case Report would be a good thing?
Good for you for looking at your health holistically. I really hate the trend toward focusing on symptoms in isolation from one another. It just seems backwards and useless. Good luck with getting all the pieces together for your appointment!
First, figure out your goal. Are you writing to make yourself feel better, to shame the doctor, to get it off your chest, or to strongly inform in hopes that maybe one other person won’t go through the same thing? You list your wants, but you need one major goal (and, reading between the lines, it’s likely the last one). Then write towards that. Also figure out if you want something specific — do you expect a response with an explanation of her clinical thought process? If so, ask for it directly.
If I ever get a diagnosis for whatever’s wrong, I’d love it, but though gluten is a part of it, it looks like celiac is not (but I’m not willing to go back to eating it long enough to get a proper endoscopy test done; it makes me feel that bad.)
It’d definitely be partly to make myself feel better/seek closure (though Jess makes a great point below that I shouldn’t really expect closure in the form of a reply). But I don’t want to shame the doctor; I want to give her info WITHOUT shaming her, which I think would just make her dismiss it.
I hope you get a diagnosis eventually. I’ve gone back and forth on whether I should wait to write this letter until I actually feel better, to be sure that celiac is the underlying issue causing everything so that I can write from a more solid foundation…but I have a feeling by then I might be so relieved to be feeling better that I’ll have lost the righteous vehemence that would propel me to write the letter. That’s why I want to write it now, while I’m motivated—but without sounding whiny and angry. All of these comments are so helpful for that, so thank you!
Hi Molly,
I am sorry that you experienced your delay in diagnosis (and lack of a
proper diagnosis for so long). I think it is awesome that you are
sharing your journey with others, as there will be sure to be many who
read your posts and will relate and be helped by you.
I feel that I am able to see both sides pretty well, by being both a
doctor and a patient.
First of all, writing will be much more beneficial with calling. I
fear that if you call the GI doc, that you will play phone tag for
quite a while, and that when you do get a chance to talk to her that
she may be rushed and not devote the attention to you that you
deserve. A written, typed letter is the way to go. I have had
patients’ families try to contact me on Facebook and that is not a
good idea for multiple emails. Email would be the 2nd best route, but
I get about 200 emails a day, and in my case am very rushed when I go
through them.
Be sure to explain who you are in your letter…name, date(s) which
you saw her, your symptoms, her differential diagnosis (what she told
you your potential problems were), and tests which we performed. Then
remind her of the diagnosis and plan which she had discussed with you.
Then tell her that it turns out that you have Celiac Disease. You can
explain that you are pretty sure that you had it back when you saw her
in 2011 and how much your health has improved since going gluten free.
I would end the letter by letting her know that you have shared your
experience in case she encounters other young women with similar
symptoms in her practice.
I would not expect to get a response, but I can trust you that she
will receive and read your letter.
Jess
P.S. For an uplifting read: http://www.thepatientceliac.com/2013/01/12/my-first-trip-a-gastroenterologist
Thank you so much for this advice. I really appreciate your perspective as an insider/someone who can see both sides of the issue (and thanks again for posting those doctors’ comments; I found that fascinating). I’ll definitely go with a typed letter with my signature, mailed to her office.
As for your visit to a gastroenterologist post—ugh! How awful! So sorry to hear about that, but fortunately you’re right that there are great doctors out there too (yourself included, I’d wager!).
I am useless in helping you, but OMG DO IT.
I wrote out a history and physical (current problem, symptoms, medical history, any lab work and whatmeds you take, what you want as the plan of care) to send with my grandma for different reasons but it gave an overview of her problems and then she didn’t have to worry about forgetting things at the appt. I’m a nurse and I would say anything written is good, also finding a good nurse to intervene for you is helpful.
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