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

Amazing Stupidity


floridanative

Recommended Posts

floridanative Community Regular

Nisla - I don't know what to tell you but one of my closest friends in CA told me her Mother died of stomach cancer...I thought it was breast but that was after it spread from stomach to throat to breasts. The woman was dead at 67. I think your idea is worth a try and could prolong your Mom's life but don't be surprised if the pcp doesn't get on board....my Mother's pcp told her Celiac is really rare so I probably didn't have it, that was of course before my biopsy...anyway, I think you have to fight to even get tested correctly for Celiac so if your Mom wants to live in denial, her doc will probably be fine with that. It's just so sad and disturbing. If I was a doc that only knew how to put a band-aid on people instead of actually helping them....well I couldn't sleep at night, that's for sure!

Gotta get over to Marietta for a meeting. And in this lovely weather - not!


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

I know Donna--your point is well taken about how your mom would never question a doctor. After thinking about this (and fuming) last night, I really think that my mom's doctor did the one test because he knows that my mom will never question what he says. She is a very compliant patient--will do or take anything she is told to by him. Last year, she could have died from complications of the Coumidin that he had her on--and it turned out she didn't even need to be on such a potent drug. That was discovered while she was in intensive care for 2 days! But even though it was causing such problems, she dutifully took it every day until he ALLOWED her to go off of it. Boggles the mind. Since I gave her the test info--I'm sure he did a 'token' test to appease me--and get me off her case, and his, so to speak.

Nini--I think your plan is worth a try! It's not meddling--you're just trying to get a point across to the thick-headed doctor. It's just sad that such lengths would be necessary.

Tiffany--Thanks, I knew you'd understand :)

Rusla Enthusiast

My new doctor is from South Africa. He told me what I told him about the crap from other doctors and my having to force them to do a skin biopsy on my dermatitis herpetiformis did not surprise him. He said that North American doctors are not well trained, the drug companies dictate everything because the government gets a big kickback from them. He was upset at the fact that four specialists refused to see me about my thyroid when I had obvious nodules and that I was choking, that I had suffered previously from the bad pernicious anemia with no real answers and that they did not really want to check out celiac disease and did the test wrong in the first place. He hates our system and their pandering to drug companies. He feels the same thing as many of us do why doctors in North America won't pay attention to celiac disease is because they can't feed you pills for it.He said if his family didn't like it here so much he would go back to South Africa.

I just thought stupid doctors was a Canadian thing but after hearing all of you in the US I know it is an epidemic in North Americal. It is too bad everyone has had to suffer and others are still suffering because doctors don't care and are too stupid to care.

jerseyangel Proficient

Yea Rusla--we're all in the same boat on this one. Great news that you found a knowledgeable doctor--hang on to that one :D

Claire Collaborator

Even the younger generation are sold on 'dcotor knows best' and will not be proactive in their own behalf. My daughter told me she thought it was 'embarrasing' that I would presume to tell a doctor what tests I wanted. If I needed a specific test the doctor would order it - that I was being rude and arrogant.

This daughter's health issues are far more critical than mine! Obesity, high blood pressure, fibromyalgia, silent migraines, restless leg syndrome and multiple food intolerances and chronic depression. She just takes the medications and hopes for the best.

Very frustrating for me - and I guess likewise I am a frustration to her. Claire

Guest nini

the thing that holds me back from following through on this plan is that I would have to pay a copay to see a Dr. that I really don't have any intention of becoming a patient of. I am happy with my new PCP. She's from India and is very knowledgeable about Celiac and autoimmune disorders. She doesn't just write a prescription and leave the room, she talks to me first, finds out if I even want a prescription or if I'm just trying to figure out what is wrong so that I can treat it myself.

my mom and my sister AND my bil are all of the mentality that the Dr. knows best and they seriously wait to get permission from the Dr. before trying ANYTHING. It's like they can't think for themselves anymore. My bil has been in and out of hospitals as long as I've known him. He's had part of his intestines removed for diverticulosis, gall bladder removed... God knows how many other surgeries, currently having a bout of severe migraines... and will he consider changing his diet??? Guess. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Nancym Enthusiast
Anything printed off the Internet by an informed patient is seen as being the 2006 equivilent of 'Snake Oil' and of no possible relevance to the 'medicate the symptoms ignore the cause' ethos of western medicine.

Amen sister! My Mom's doctor is that way. I suggested that anti deppressants were not appropriate for my Mom because of her heart condition and the recent study that showed patients with cardiac problems died a lot more when they were taking AD's. She had no clue, absolutely no clue! She said, "Oh no. They're perfectly safe! We've been prescribing them for years." I suggested that my Mom might do well with fish oil supplements for inflammation and mood. She didn't know what they were. She thought I meant mineral oil. Wow! I couldn't believe how clueless this doctor was. Do these people read?


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



Celiac.com Sponsor (A8-M):



tiffjake Enthusiast
Okay - every time I find out about an idiotic remark made by a doctor regarding Celiac disease I think it can't get wose. And yet is continuously does.

I hear ya! After being diagnosed I talked to my dad and told him to get tested. He said that his brother, my uncle, had been tested YEARS AGO and the doc said "yeah, you have it, but you can eat gluten, as long as you don't feel sick"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So, needless to say, he is SOOOOOO not gluten-free. I hate doctors. I need to put that in the "I Hate" thread.

MattUK Newbie

This is an international scandal. What can we do about it? My doctor (in London) just told me that I dont have celiac disease as the bloods were neg and when I explained I can still have it (im SURE i have it, yadda yadda, gastroscopy next firday) he said 'Have you ever thought about having counselling?' I really wish i had said 'Have you ever thought about having training' but due to the foggyness im not as quick witted as i used to be.

We all need to fight this disgusting lack of regard for peoples health. Lord knows how many other people are suffering and dying because of these fools.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748

    Clare Durham
    Newest Member
    Clare Durham
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      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
      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
      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
      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.   
×
×
  • 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.