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Anxiously waiting


Kal

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Kal Newbie

Hi all.

Ive just had my blood test results which showed a high level for coeliacs,originally i went to doctor coz my bowel movements had changed and haven't been normal for over a month and i am very tired,the tiredness i assumed was low iron and my tummy/bowel issues well i thought IBS Maybe or a bug as ive not really had issues before,anyway she has put me on a wait list to have a endoscopy done. Im so so confused as i didn't expect i may be coeliac,my symptoms come and go so on a day im good i think sweet my issues are resolved but then they come back so they are not consistent which makes me wonder if it is coeliac or not,but my tiredness,headaches,shortness of breath,tummy gurgling,different bowel movements,feeling nauseous are all symptoms that come at different times. The test i had was for gliadin IgG which was 20 but should be 7 or lower, i guess im just anxious to wait who knows how long for the endoscopy coz i would like to try and cut out gluten but the dr said not to till the procedure is done. P.s im in australia so not sure if things are different here.


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cristiana Veteran

Welcome to the Forum, Kal.

I think we have quite a few Australian coeliacs on board here so hopefully someone will be able to chime in about how long it will take for your endoscopy.

I'm in Britain and here it depends greatly where you live in the country - it can take many, many weeks,  so some people go private if they are feeling very poorly and don't like the thought of the wait.   

You will find this website a fantastic resource in the coming months.   I am sure you will have found this one too which is Oz specific:

Open Original Shared Link

Your doctor is absolutely right - you will need to keep eating gluten until diagnosis.  In the UK I was told two slices of bread a day would be enough.   Instead I decided that I would eat everything I knew that would be off limits after my diagnosis and I would miss!

On a positive note, I now find most of the things on that list are being manufactured gluten free by various supermarkets so things are getting easier!:)

If you are anemic speak to your doctor about iron/B12 supplementation.   I was started on these supplements long before they knew what was wrong with me and it helped tremendously with my fatigue and anxiety.   Do make sure they keep an eye on your levels though as I was told I should stop taking iron recently - one can have too much of a good thing.

Keep us posted!

 

squirmingitch Veteran

Ditto what Christiana said.

Kal Newbie

Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.

GFinDC Veteran

You might ask your doctor if they have a standby/wait list Kal.  Some do that and then they can fit in people if there are cancellations or no-shows.

Kal Newbie

I'll check withthe Doctor tomorrow. So weird coz i feel ok today. In a weird way i hope the endoscopy is positive at least then I'll know what the issue is lol.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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