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

Newly Diagnosed Coeliac ? Perth Au

livliv78

Recommended Posts

livliv78 Newbie
livliv78
Posted

Hi There

 

Today I was told that I have celiac disease..

 

It has been a long six months of persistant symptoms.  Waking up one day and having the worst indigestion, pressure in chest and back, lots of burping and a constant lump in my throat.  I saw the GP and logically they thought it was GORD (as I have suffered before) and started me on Pariet.   I should say that I had just had a baby six weeks prior to this all starting and had been on Nexium during pregnancy but that suddenly stopped working..

 

Medication did not work, thought I was going crazy..

 

Started seeing a chiropractor.  Some days it improved but always symptoms just not at such a severe level..

 

Eventually said to GP I want to have an endoscopy.  He was a little reluctant as I had had one a few years previous (due to very similar symptoms) and everything looked okay.. (no biopsies were taken then)..

 

Also due to desperation and encouragement from chiropractor I started a gluten free diet..

 

Two weeks into gluten-free diet I had the gastroscopy with biopsies and results came back chronic inflammation but non specific and could be caused by coeliac, helicobacter, ulcer or medication..

 

So suggested for gene test for celiac disease and helicobacter..

 

Gene test came back positive, helicobacter negative..

 

So GP said I have celiac disease.  I asked if I would have to go back on gluten as I know I should not have started the gluten-free diet prior to biopsy and blood test to be retested but he suggested that with the combination of chronic inflammation and presence of alleles for celiac disease that I have it and to continue as I am..

 

I have been on a gluten-free diet for about 8 weeks now and do have a lot more good days recently then I have in the last six months..I know it can take a long time to improve..

 

Would those out there diagnosed with celiac disease be happy with the diagnosis the way it has come about?

 

Any advice would be appreciated..sorry for such a long winded post!

 

Thanks xx

 

 

 

 

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

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

Welcome to the forum!  Many of us had long crappy roads to diagnosis and are very happy with the fact that we have answers now.  It takes time to heal up after going gluten-free, but stay strict with it and over time you will notice some changes.  I think you got lucky only having been gluten-free for two weeks, that wasn't enough time for your small intestines to heal up so you got a solid diagnosis.

 

Feel free to read through the forum, and keep in mind a lot of product information is going to be for the US product, but there are a few Australians around here that can help you out.  Also, if you want to make a signature that says you are in Australia, people can gear their advice towards that once they see it.  Cheers! :)

Saz Explorer
Saz
Posted

hi. Welcome to the forum. As you might have seen we have a aus/nz thread. There is not as many of us as there used to be but will.try to help you where we can. As previous poster mIentioed, product ingredients can be very different.depending on country they were made in so always mention you are in aus (alternatively post in au/nz thread). A good example is m&ms. The ones made in au are not gluten-free but.some from countries such as usa are.

A little tip: try to focus on all the things you csn eat rather than those you can.t. It might seem hard right now but it willl help.

Also, try to distingush between things you don't like and things that don't taste good due to lack of gluten. For example I really don't like coconut biscuits. this is regardless of the gluten content. Not explaining very well but I'm trying to say is if you ne er liked chocolate cake, then don't think of it as a thing you can't have or that the gluten-free version is not the same.

weluvgators Explorer
weluvgators
Posted

Hi! We live in Perth. Let me know if you have any specific questions. The Coeliac society was very friendly and helpful when we first moved here, and they have a lot of great resources. We have similar celiac diagnostic issues and are happy with how we have progressed. We certainly had more than our fair share of trials and continued searching for a "something else" for our issues which got an additional wheat allergy diagnosis on top of the known celiac issues. We continue gluten free and continued looking for other issues as long as we were having symptomatic problems. One of the best things for our health has been moving to Australia. I hope you start feeling better soon.

weluvgators Explorer
weluvgators
Posted

I am curious if you had a full coeliac blood panel test and what the results were. I would have the full coeliac panel done with checks on some common deficiencies, like iron.

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. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      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...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      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...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748
    IleneG
    Newest Member
    IleneG
    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

    • 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.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.