Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Must Be A Celiac Thing!


gfgypsyqueen

Recommended Posts

gfgypsyqueen Enthusiast

I am really the only one who gets the "must be a celiac thing" write off from the doctors?? I would actually love to hear that I am the only one that this happens to, but sadly I doubt that is true.

I know regular family doctors don't know a whole lot about Celiacs. I understand that. I know my gastro even said I would know more about this disease in a month than he does. I didn't like that answer, but I understand it. He just needs to see the signs and diagnose the disease, I need to live with it.

My problem is why is it now when I go to a doctor because I am sick (non-celiac related), the drs first reaction is always "... hmm...must have something to do with celiacs..." Not everything is related to and exists due to Celiacs!!!! Years ago all my "classic Celiac signs" were written off as appendix, female problems, weak stomach, IBS, it's in your head, more female problems, reflux, ulcers, let's open you up and look around, let's remove a few organs and see what happens, and the list goes on and on. NOw it is like I have gone full circle. Now I can't get a doctor to look past the fact the I have food allergies and Celiacs, and that I am generally healthy exept for the reason I am here to see the doctor today. The knee jerk reaction from the doctor is that once a Celiac, everything else that happens is directly related to celiacs - "don't you have a gastro you could see??" My knee jerk reaction is I feel like kneeing these doctors. . . . just to see if they can think past it....

Too all of you good doctors, I appologize in advance, I am just really upset with my traditional healthcare providers!!!


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



Celiac.com Sponsor (A8-M):



mamabear Explorer

I am really the only one who gets the "must be a celiac thing" write off from the doctors?? I would actually love to hear that I am the only one that this happens to, but sadly I doubt that is true.

I know regular family doctors don't know a whole lot about Celiacs. I understand that. I know my gastro even said I would know more about this disease in a month than he does. I didn't like that answer, but I understand it. He just needs to see the signs and diagnose the disease, I need to live with it.

My problem is why is it now when I go to a doctor because I am sick (non-celiac related), the drs first reaction is always "... hmm...must have something to do with celiacs..." Not everything is related to and exists due to Celiacs!!!! Years ago all my "classic Celiac signs" were written off as appendix, female problems, weak stomach, IBS, it's in your head, more female problems, reflux, ulcers, let's open you up and look around, let's remove a few organs and see what happens, and the list goes on and on. NOw it is like I have gone full circle. Now I can't get a doctor to look past the fact the I have food allergies and Celiacs, and that I am generally healthy exept for the reason I am here to see the doctor today. The knee jerk reaction from the doctor is that once a Celiac, everything else that happens is directly related to celiacs - "don't you have a gastro you could see??" My knee jerk reaction is I feel like kneeing these doctors. . . . just to see if they can think past it....

Too all of you good doctors, I appologize in advance, I am just really upset with my traditional healthcare providers!!!

[/quote

Well......I guess I'm more impressed that he is making a celiac connection past the gut issues! Sorry, but you may have to teach them. Medical education is awful about celiac disease, and if you don't search it out....the knowledge given in training is terribly inadequate. I think it would be just fine if you kept a straight face and said "no, I don't think my strep throat has to do with celiac!" :huh:

Jestgar Rising Star
I think it would be just fine if you kept a straight face and said "no, I don't think my strep throat has to do with celiac!" :huh:

:lol: :lol:

You can also tell them that it may be related to Celiac, but that doesn't mean it can ignore it and not treat it.

Jo.R Contributor

I know what you mean. When i first had symptoms I didn't want to go to the Dr. I'm overweight and of course that would be why I have gastro probs. I was lucky, but my mom wasn't. She had some complaints that no one took seriously until she quit smoking, then they found out she had MS, and neurorapathy. My first rule of thumb is to fight for your health. If you don't no one else will. Good luck.

Karen B. Explorer

My struggle has been getting my primary doc to consider my Celiac when diagnosing my symptoms. For instance, I have had a single, boil like eruption occur on my left side twice now, in the very same place, occurring about once every 2 years. She didn't think it could be Celiac related because it wasn't DH. She tested it and said it was "herpetic in nature, like shingles but nothing related to Celiac". Then I found out that a co-worker who is Celiac and her daughter have both had similar eruptions. So, it's not Celiac related but 3 Celiacs have had something similar that no non-Celiacs have exhibited. (at least none I know well enough to ask). Hmmm. And my primary doc is an Internal Medicine Specialist! At least she checks to see if she's prescribing gluten-free drugs now, which is an improvement.

I had to tell my Mom's doc that I would pay for her Celiac test if it came back negative because he insisted she couldn't have Celiac. She was overweight and her only real symptom was muscle cramps. Guess what... Medicare paid for the test and her muscle cramps have gone away since she started a gluten-free diet.

My sister has had 4 neck surgeries and her doc couldn't explain why the bone didn't heal properly. She has a wheat allergy but can't eat enough to register on a Celiac test, but she can get by with the occasional "cheat". Just to humor me, she went on a gluten-free diet during her recovery this last time and the bone healed properly but her doc has never heard of gluten affecting the way bone heals... that's an intestinal issue.

I think we need Celiacologists.

nikki-uk Enthusiast
I think we need Celiacologists.

:lol::lol: Yes!!!!

BTW - My coeliac son gets boils - flare ups seem to co-incide with being glutened.

loco-ladi Contributor

Ok, this prolly is no way related, but on the off chance...

About 6 years ago I had surgery, and one certain spot on the incission (sp) never healed right, it would go away, then reappear, go away, reappear, dr after dr told me "its s stitch working its way out...

Wonder if now that I am gluten-free it will disappear or not, never have seen that elusive "stitch"

some things just make you go HHhhmmmmmmmm


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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    2. - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    3. - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    4. - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    5. - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442

    psasso76
    Newest Member
    psasso76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...