Should I Tell My Old Doctors?

[Adelle]

My mom brought up an interesting point.

I've been to 10 doctors (including 1 GI). All of whom missed the diagnosis. She said I should write to them telling them what was wrong with me. Would they be receptive to that? I obviously have to wait until I'm not as MAD as I am now, but at some point, should I tell them that it wasn't in my head, that they dismissed me prematurely.

I'm still unsure. Any thoughts? Thanx.

[gfp]

My mom brought up an interesting point.

I've been to 10 doctors (including 1 GI). All of whom missed the diagnosis. She said I should write to them telling them what was wrong with me. Would they be receptive to that? I obviously have to wait until I'm not as MAD as I am now, but at some point, should I tell them that it wasn't in my head, that they dismissed me prematurely.

I'm still unsure. Any thoughts? Thanx.

It can't hurt so long as you are not hurt by their responses.

Don't expect them to admit mistakes, doctors never do, they bury them....but you might save someone else the same anguish and health problems.

Just don't be upset by their responses or lack of.....

I'd probably add you don't expect an answer and you are just informing them for the benefit of their other patients. That way you won't get nasty lawyers letters back

[IrishKelly]

My mom brought up an interesting point.

I've been to 10 doctors (including 1 GI). All of whom missed the diagnosis. She said I should write to them telling them what was wrong with me. Would they be receptive to that? I obviously have to wait until I'm not as MAD as I am now, but at some point, should I tell them that it wasn't in my head, that they dismissed me prematurely.

I'm still unsure. Any thoughts? Thanx.

I've actually been thinking the about doing this myself, especially my GI Dr., only because i would like to save others from this horrible nightmare. The worst part about him was that he said to me, "there is something out there called Celiac's disease but you don't seem to qualify for that, so i'm not going to test you for that"...what an idiot! Anyway, i agree with the fact that if we do, we must inform them that we are letting them know strictly for the future of other patients

[Ursa Major]

I think it would be a good idea to let the doctors know, and to send a brochure as well, that points out why so many people remain undiagnosed. Also, it should have a list with all the possible symptoms of celiac disease, as most doctors will only look for two of them, weight loss and diarrhea. If you don't have those, you 'can't' have it, in their opinion.

I have educated my doctor on celiac disease, and fortunately, she is one of the extremely rare doctors who admits her mistakes (that's why she is still my doctor, I prefer a humble doctor to a knowledgable one).

[Nancym]

I've always been frustrated because MD's never hear about their mistakes, their patients just leave and they go on very blythely ignorant of their failings. Yes! You should write!

[chrissy]

you know, i really don't see it as a "failing" for a doctor to have missed celiac-----the information just was not readily available. it is only recently that it has been realized that celiac is a common disease and not a rare disease.

[kbtoyssni]

I was planning on doing this as well. Just haven't gotten the time to sit down and do it. I had one GI who should have caught it and if I sent him a letter I feel like it might be received as "you're incompetent". Which is true, but not the message I want to send

The other doctors I don't expect to recognize celiac. These are doctors like my ob/gyn and psycologists/psychiatrists. The symptoms I had were definitely gluten-related, but I don't expect a therapist to say "you're depressed, let's test for celiac". For these doctors, I'd like to treat it more as an educational things. Sort of a "thank you for helping me, I just found out the root cause and it's really common so maybe more of your patients have it".

[Ursa Major]

The other doctors I don't expect to recognize celiac. These are doctors like my ob/gyn and psycologists/psychiatrists. The symptoms I had were definitely gluten-related, but I don't expect a therapist to say "you're depressed, let's test for celiac". For these doctors, I'd like to treat it more as an educational things. Sort of a "thank you for helping me, I just found out the root cause and it's really common so maybe more of your patients have it".

That's a very good point you're making. I am doing the same thing with my chiropractor and therapist. Because the cause of my chronic lower backpain (which was helped, but never quite alleviated by chiropractic) was celiac disease! When I went gluten-free, that pain went away about 80% within a couple of weeks, and only comes back when glutened.

And of course, my therapist treats many patients with depression. If he knows that depression is a possible celiac disease symptom, and one of his depressed patients has gastrointestinal symptoms as well, I imagine that now a light might go on in his head, and he might suggest testing for celiac disease.

And my GP now knows that yes, people with celiac disease can have unexplained weight gain, not just weight loss, thanks to me educating her on that fact. And she also knows now that lectins can cause many problems, as can salicylates.

As for my former doctors, there is no way I can do anything about them, as they're either in Germany, retired or have left the country because in the USA doctors are treated better than in Canada.