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Newly Diagnosed Coeliac ? Perth Au

livliv78

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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

 

 

 

 

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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.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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