Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Tell My Old Doctors?

Adelle

By Adelle
in Doctors

Recommended Posts

Adelle Enthusiast
Adelle
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
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 Contributor
IrishKelly
Posted
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 Collaborator
Ursa Major
Posted

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 Enthusiast
Nancym
Posted

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 Collaborator
chrissy
Posted

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 Contributor
kbtoyssni
Posted

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".

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748
    Lostcha
    Newest Member
    Lostcha
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.