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Not Sure If They Tested Total Iga

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Hi, I have a few questions and lots of rambling...

I had celiac tests about 6 weeks ago, they came up negative. I had been gluten free for about 3 weeks, then put myself on a gluten challenge for 6 weeks before testing, and I'm aware that might have been an issue. When the came back negative my doctor said there was nothing to worry about, and she's focused more on my insulin resistance/pcos (diagnosed last year). But now I'm wondering too whether they tested Total IgA. It wasn't listed as a separate line on my results. I found the guide for doctors issued by the pathology lab that did the tests, and it says that "coeliac sereology" (which is what my doctor ordered) includes:

Coeliac Disease Serology

Includes IgA Gliadin Ab Tissue and IgA

Transglutaminase (TTG) Ab

My understanding is that if I'm IgA deficient then these results would give a false negative, but I'm not sure if that test was done, or if my doctor should have ordered it in addition to 'coeliac sereology'. I'm in Australia - how does it compare to other people's results?

My stomach symptoms were the worst when I first started eating gluten again after being gluten free, but the fatigue, balance issues and bloating have been around forever it feels. My gluten free weeks were unintentional, I was following the 'paleo diet' because I've discovered that I need to keep my carbs pretty low in order to lose weight (because of the insulin resistance). The fatigue could be attributed to the IR, especially since the gluten challenge meant I ate way more carbs than I can really cope with (and I gained 10 very unnecessary pounds in a few weeks, gah), but that's only one part of it. My B12 levels were 357 I think which was fine according to the range given but I've read here that it should be higher. My ferritin level was one above the minimum in the range. The doctor thought all was fine. I take metformin for the insulin resistance and that can affect B12, but the issues I had with balance go back way before I started taking it. My understanding is that gluten can affect balance either through B12 deficiency, or by directly affecting the brain, is that correct?

I'm seeing another doctor next Monday, a GP who specialises in coeliac and I'll see what she says, but I'm curious what you all think since I've read so many of your posts and found them really helpful. I think either way I will try going gluten free, but I don't have a good track record for sticking to diet-type things since I've struggled for so long with my weight. I'm also concerned about the balance issues. A chiropractor told me that I had one of the worst responses he'd seen to the test where you put your feet together and close your eyes (I tip straight over) but my GP got me to do some other tests and didn't see any concerns. What to think? I really feel I need a diagnosis to get myself, and others, to take it seriously and I know I wouldn't have the insulin resistance/pcos diagnosis if I hadn't pushed that every step of the way. I've already had the 'don't be silly, coeliac is incredibly rare' response from my mum, who then went on to describe the various digestive issues she and her father both had. She does concede I may well have issues with gluten.

Oh, i should add that I've stayed on gluten since I first noticed it was an issue and so my 'challenge' has been nearly 12 weeks now. I spent the first 6-8 weeks in a world of bloated, crampy, headachey, heartburn hell, desperate to give it up but it seemed worth it while I was waiting to see the 2nd doctor and I don't feel so bad now. I wonder if blood tests at 6 weeks and 12 weeks would show much difference? Dr Green's book says a gluten challenge should be followed by a biopsy, not more test results. Wonder what the 2nd doc will think?

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From the wording it looks like they ordered IgA-Gliadin, tTG-antibodies (AB) and total IgA. You've certainly got a lot of the different problems associated with gluten-intolerance so good luck on getting to the bottom of it. The only really important thing in all of it however is whether or not you feel better while gluten free.

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To me, it sounds like total IgA is not in the celiac panel, and not done.

Here most places in Europe, the total IgA is automatically done with a celiac panel.

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Thank you to both of you for replying, I will ask my new doctor and see what she thinks.

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