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):

Get Biopsy?...please Help With Suggestions


pieguyblue

Recommended Posts

pieguyblue Newbie

Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise. <_<


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise. <_<

I think your "specialist" is specializing in B.S. The bloodwork said celiac. There you go. The biopsy is NOT the gold standard it was thought to be. The samples could be taken from areas not damaged, slight damage could occur where it is misread as normal...You have had a positive test for celiac disease. Two in fact - the diet challenge. The fact that you are feeling better w/o the symptoms every day would be proof enough for me. BTW, the diet challenge is how my dr dx'd me 9 yrs ago. The 2 days avg/week of symptoms could be from a variety of things. I don't know how long you had symptoms, but the longer you were un/misdiagnosed with celiac disease, the more damage was done to your system and therefore more time to heal completely. And you could be getting hidden gluten or be victim to cross-contamination which would cause the symptoms. Your body is telling you it likes the gluten-free diet much better than a gluten diet. Listen to it.

Annette

KaitiUSA Enthusiast

Your blood tests showed it ..you have it. A biopsy can only rule celiac in it can't rule celiac out so the only reason to even get one is to maybe see the extent of damage done.

If you go back on it for testing you need to be on it for 3 months prior....I personally do not think it is worth it....

Have you also changed products like shampoos, hairsprays, makeup, etc?

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...