Gluten Free - but what do these results mean in the light of that ?

I have Hashimotos , Vitiligo, Pernicious Anaemia & likely Addisons Disease . Both my boys have Addisons disease , Type one Diabetes , Hashimotos , Pernicious Anaemia , . We all have low iron / ferritin / vitamin D etc . Impressive family history goes back a few generations . One Son has Coeliac Disease - other son is monitored yearly . I stopped eating gluten to support my then 7 year old son when he was diagnosed in 2007 .

I went to Barts as I am likely early stages Addisons Disease ( Adrenals packing up )

Can anyone explain these tests & results please .

Immunoglobulin A 1.66 g/L - range ( 0.8 - 4 )

Immunoglobulin G 10.9 ( 5.5 - 16.5 )

Immunoglobulin M 1.29 ( 0.4- 2 )

Now these are related to Coeliac Disease testing . And The Professor at Barts requested them when we had the silly conversation in which he said he would test me for coeliac disease & I said but I don't eat gluten . And said well we will test & I said I haven't eaten gluten since 2007 & so it won't show up . He said you would have to eat a lot of gluten & then I can do a biopsy ... I haven't eaten gluten . One child has coeliac . Any thoughts - I of course never trust results in range & if I was eating gluten would they be higher & therefore not in range ???

So as I don't eat gluten what do they mean ? Thoughts please .

4 Replies

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  • I don't know if you listened to any of the Gluten Summit talks but if you did I would not worry to much about these results. I would accept that you either have Celiac or NGCS and don't eat Gluten ever again. It makes no difference now and as my Consultant said to me what is a diagnosis going to change? Im certainly not going to go back to eating it just to prove a point and pass a test!

    I would if I were you make your house hold a Gluten free zone as it seems it is obviously in the genes. Had you listened to the lectures you would know that even after a negative biopsy it could be a false negative and they know so much more about Gluten now. Celiac is a systemic disease not just a gut problem, it affects your whole body. One of the doctors said that had they stuck the scope up to the brain and took cells from there instead of the stomach when they were first diagnosing Celiac then it would have become a neurological disease instead of disease of the gut. A good doctor should be treating you as if you had the disease not still chasing for piece of paper.

    I hope things work out for you and your boys.

  • Thank you for your reply . So are you saying that a " Normal " person would not have ANY " showing of numbers within the range ? That they would be below the bottom of the range ?

    Plus where do I find the talks you mentioned .

    I have no need to go back to eating gluten & avoid to a high standard . But it would be interesting to have the info to back up my decision .

  • Hi Purple Mummy, I'm not an expert on coeliac tests, hopefully someone will be along to help you there. I do know that if you aren't exceedingly strict about cross-contamination it's possible even tiny amounts of gluten could be antagonising your immune system, ie via oats or other hidden gluten sources like in tablets or food additives. I would presume that might be enough for you to be producing the antibodies if you are particularly sensitive.

    I noticed most of the illnesses you mention are auto-immune like Hashimotos (which I also have) and autoimmunity obviously runs in your family. Many people with autoimmune disease seem to have a hard time with any form of gluten, ie avenin in oats.

    I find your doctor's approach a bit worrying. If your adrenals are affected your immune system is already in overdrive and I personally would be very wary of pushing it further by reintroducing a large amount of gluten!

    Have you thought about trying the FODMAPS diet? I think that's aimed at removing any possible antagonistic foods. Again, someone else here might be able to advise further on that if you ask about it specifically.

    A good website to visit is chriskresser.com. He's an American doctor who believes there's a big connection between grains and auto-immunity, particularly thyroid disease, even when it runs in families. He also covers other grain gluten forms which can be problematic.

    Good luck, Rita

  • Hi purplemummy,

    Those are not coeliac tests in themselves. They are complementary tests to make sure your body is capable of making antibodies in the first place.

    The test is called immunoglobulins. I had these tests to make sure that I wasn't immunocompromised (I wasn't).

    You can read about the test here: labtestsonline.org/understa...

    Your numbers have come back mid-range which seems absolutely fine to me. Very high levels of antibodies would be bad and very low levels would be bad, so you want to be mid-range. The test is quite a broad brush test and won't pick up subtle immune issues, but it's a good front line test for major problems.

    Some people can't make IgA antibodies (so-called IgA deficiency) which means they would produce a false negative in the coeliac test (which is based on IgA antibodies), and that's why the test is often carried out at the same time as coeliac testing.

    The coeliac disease test is a really unlikely to be positive if you've been strictly gluten free for 7 years, but I suppose you never know. Strange things can happen.

    I hope this helps

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