Possible Celiacs disease, with mixed symptoms

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My daughter is 3, and she had 4 months of GI issues and diarrhea before we were able to get the diagnosis of possible Celiacs disease with a "Weak positive" celiac blood test panel.

We got the results, then cut out Gluten & her diarrhea immediately stopped.

We were seen a few weeks later by a GI specialist who recommeded that we do a Biopsy to confirm celiacs. We had to introduce gluten back into her diet for the scope/biopsy for 2 weeks, and when we did she had no GI issues at all.

Wondering if anybody else has had this issue?? I know that the biopsy is needed to confirm celiacs disease, but if she did have celiacs wouldn't she definitely have a reaction when we reintroduced gluten.

I just don't want her to have a scope unless she truly needs it.

Advice or experience would be greatly appreciated!

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1 Reply

  • Posted

    Hi Laura,

    Your daughter is lucky to have such attentive parents.

    People with Coeliac can respond differently.

    In my case I can accidentally have Gluten with very limited if any obvious response (other than the hidden damage which I cannot see) whereas my daughter has an immediate 'system shock' to the very slightest exposure and literally has to take to her bed.

    When I had my biopsy the intestinal damage was obvious and very extensive, whereas my daughter had to have two biopsies to find any trace at all.

    My understanding is that it takes an extended period of constant exposure for the damage to become apparent and I don't think 2 weeks would be enough for a clear result, but get expert opinion on this and from a hospital consultant, definitely not your GP. I clearly had Coeliac all my life and didn't realise until I read an article about it in a womens magazine. Meanwhile, I'd been prescribed Iron tablets from my GP for anaemia for over 10 years and I was still profoundly anaemic, which my doctor said 'was a complete mystery' to him! By this time my Thyroid had completely died off as well, which can happen when the auto-immune reaction is so strong and left untreated, it can cause other systemic endoocrine problems.

    I would suggest, from mine and my daughters experiences, that you get referred to a good hospital, see a consultant and take it from there. A positive blood test followed by a positive biopsy is the only way to confirm Coeliac and your consultant will advise you best on how to prepare. Good luck, oh, and PS, when I finally got my Thyroid and Coeliac treated it was amazing, I felt like Superman! 😉

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