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

Waiting For Final Results

Cat84

Recommended Posts

Cat84 Newbie
Cat84
Posted

Hi,

So I have always problems with bloating etc and had bouts of constipation and then everything going straight through me. Over the past 2 years or so when I had blood tests and was always low in iron or folic acid but didn’t really think anything of it and just took tablets to bring my levels back up. Then a couple of months ago I was almost ‘caught short’ going to work and went to doctor as I  didn’t want a situation where I couldn’t get to the toilet on time and the urgency I would have was getting worse. The doctor did further blood (low in folic acid again) but my celiac test came back negative but he still referred me to the hospital. Was surprised as thought it would be a case of IBS (it could still be) and thought he would send me away to keep a food diary.

 

So went to the GI consultant and spoke about my symptoms (including sore red patches on my tongue) and although my bloods came back no to celiac he booked me in for and gastro endoscope and biopsy.  Again surprised as know friends that have had to fight for this but happy that it would come back clear and I could go on with my life knowing that I just have to be careful about not eating masses about of wheat etc. When they took the biopsy (4 in total) they said my bowel looked really flat and not real folds at all. After when we spoke about what she said though the procedure (including a very sensitive gag reflex!) she said that it was really flat in bowel. She said not to worry as she has seen it like mine that have come back fine and ones that look fine come back as a positive result.

 

Now I am worried, at no point did I think that I would have celiac until now.  All I see it as is a massive change in lifestyle that I do not want to make. Part of me thinks that I am over reacting and that what will be will be but another part of me wants to be as ready as possible in case it comes back as a positive result. Guidance and help would be gratefully received.

 

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Sounds like you were diagnosed with celiac disease by endoscopy? Or about to be? Here is a good place to start

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong. yeah I think we had better test us and the other kids as well.
    2. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    3. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    4. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    5. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748
    Aron2
    Newest Member
    Aron2
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      Am I nuts?

      By trents · Posted

      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
×
×
  • 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.