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My son had positive antibodies but endoscopy showed no coeliac damage

Posted , 4 users are following.

amanda75990
amanda75990

Well I finally heard back about my son's coeliac tests today. Despite blood having positive IgG antibodies, the endoscopy came back showing no coeliac. We don't see the paed till next Feb so it's quite a long time to wait for more info. Surely the fact he made antibodies must mean something :-s I realise nobody can diagnose on here, but any ideas? We were told not to bother changing his diet yet either.

1 like, 10 replies

10 Replies

  • stell_a
    stell_a amanda75990

    Posted

    Hi Amanda,

    I am in the same situation and although I don't have advices to give, I'd be happy to hear back what your doctor thinks.

    Clearly having antibodies for something suggests that he should at least limit the substance which causes an immune response. This is my logic at lest, in the UK there are so many alternatives that it's not difficult at all to limit one's exposure to gluten.

    • amanda75990
      amanda75990 stell_a

      Posted

      Hi Stell_a Its very frustrating isnt it. If I get any further advice / info from his doctor I'll let you know, but the appt isnt for a few months yet unfortunately
  • MaggieBgood
    MaggieBgood amanda75990

    Posted

    If he has tested positive for the antibodies, I am amazed you were told not to change his diet. If it were my son, nowing what I know, I would. It is possible that, being so young, his reaction to gluten is not yet fully allergic, just sensitive, and so the actual gut is not damaged YET. If I was a betting person, I'd say that a few years of gluten would result in a damaged gut reaction. But that's just me, and I'm certainly not a specialist, just a sufferer who's been to hell and back with it all. I'm diagnosed, and I buy all my own gluten free food. The prescription bread I got was nearly out of date, and awful. That was a long time ago though, it may be different now. There are lots of gluten free products that are great. Asda is good, so is M&S. Waitrose and Tesco.
    • amanda75990
      amanda75990 MaggieBgood

      Posted

      MAggieBgood, thank-you for your input. my friend who's a microbiologist said pretty much the same as you in that its probably a question of time. There does seem to be a growing range of gluten free products available nowdays - sorry to hear about the prescription food tho - wonder if its got any better....
    • jenny82354
      jenny82354 amanda75990

      Posted

      My Docs are trying to figure out what is wrong with me so are still testing different tablets before sending me for blood tests and scans.

      They stressed me not to change my diet as this could have an effect on the test results and preventing an accurate diagnosis. They said once a full diagnosis has been obtained then they will look at what needs changing but until then its a case of pushing through the pains

    • amanda75990
      amanda75990 jenny82354

      Posted

      I hope thery find out whats the matter and you get the correct treatment Jenny. The thing now is that my sons gastro paed has sort of dismissed going into any more depth with this as there was no damage to his gut at the present time. So, thats the rerason for them saying dont change the diet. I do think tho that positive antibodies in his blood must be significant in some way. I'll question it at the next appt
  • MaggieBgood
    MaggieBgood amanda75990

    Posted

    Absolutely Amanda. And, as the mother of a teenager, what I would do if I were you, is put him gluten free while he's young, to minimise damage to his gut and then when he's a teenager, stand back and watch. If he's gluten intolerant, it will show itself pretty quickly.  They tend to rebel a little bit then, and he will probably be down to McDonald's before you can say Jack Robinson.  You'll soon know.....meanwhile, no big damage done while he's young.  Good luck with the specialist.
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