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

Grrr

nikky

By nikky
in Doctors

Recommended Posts

nikky Contributor
nikky
Posted

ok thats it ive had enough, ive read to many accounts of shody patient care and a sheer inability to look at the facts. <_<

I was lucky enough to get a good peadi GI. who knows his stuff and didnt just go 'oh we'll monitor you'

But it infuriates me to see that others of you have been less fortunate. i mean how hard can it be to listen to what we have to say. If my doctor can diagnose me with no symptoms except anemia then others should be able to get it right when presented with a patient with all the symptoms.

And then when they do run the bloodtests they run the wrong ones or not enough of them, and according to them being gluten free doesnt effect the results.. i want to know how they managed to qualify without the basic knowladge that removing the cause of the reaction stops the damage. :blink:

grr i could go on all night :angry:

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

Celiac.com Sponsor (A8-M):


home-based-mom Contributor
home-based-mom
Posted
ok thats it ive had enough, ive read to many accounts of shody patient care and a sheer inability to look at the facts. <_<

I was lucky enough to get a good peadi GI. who knows his stuff and didnt just go 'oh we'll monitor you'

But it infuriates me to see that others of you have been less fortunate. i mean how hard can it be to listen to what we have to say. If my doctor can diagnose me with no symptoms except anemia then others should be able to get it right when presented with a patient with all the symptoms.

And then when they do run the bloodtests they run the wrong ones or not enough of them, and according to them being gluten free doesnt effect the results.. i want to know how they managed to qualify without the basic knowladge that removing the cause of the reaction stops the damage. :blink:

grr i could go on all night :angry:

I second your rant!

It seems like far too many doctors quit learning when they left med school, are totally burned out, and just want to get through the day by getting the patient out of the office in the allotted 15-20 minute time frame so the day is that much closer to being over.

Are they going into medicine for all the wrong reasons or what? It just seems like patient care and wellness isn't a goal, especially when it involves a bit of detective work.

:(:angry::ph34r:

nikky Contributor
nikky
Posted
  • Author

oh and another thing they seem to think that just because your under 16 they can talk to you like your three (i find GPs are the worst for this) ggrr just because im young doesnt mean im stupid.. or that they can talk to the wall

MELINE Enthusiast
MELINE
Posted
grr i could go on all night :angry:

ok nikky we can grr together all night!!! I am one of the unlucky....Lucky you with a good doc!

itchygirl Newbie
itchygirl
Posted

Adding my "amen".

And after the patient finally manages to get dx'd, after years or decades of agony....dufus doctors, don't just hand them a gluten free diet sheet, kick them out the door and then fail to follow up when the patient continues to suffer long term complications as a result of their delayed diagnosis. Understand that years of celiac disease can take a toll on the human body, and some things (autonomic and peripheral nerve damage, pancreas damage etc. etc) may not reverse and need further treatment.

curlyfries Contributor
curlyfries
Posted

When I started having GI problems, my first instinct was not to go to my doctor. I tried to figure it out on my own. So then at one of my annual check-ups I told him I thought I had a problem w/wheat. He said, "It's probably gluten". He didn't give me any advice. Didn't order any tests. I didn't know enough to think there were any questions to ask. Seemed easy enough to me. This is just another food allergy. All I have to do is look for gluten on the labels :P. When I FINALLY figured it out and had gradually eliminated gluten from my diet, I wasn't :o about to go back for tests. I was not going back on gluten for that. When my DD started to have her own issues she went to him and said her mom thinks she has celiac and she[my DD] wanted to be tested. He got bent out of shape saying her mother can't dx herself and he wouldn't test her unless her mom did first. :o:angry::wacko:

curlyfries Contributor
curlyfries
Posted

Let me clarify something I just said. When the dr said it might be gluten, I started looking for the WORD "gluten" on labels. :lol: I thought that's all I had to do!

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      132,079
    • Most Online (within 30 mins)
      7,748
    Terra33
    Newest Member
    Terra33
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.