Negative test..still possible?

Hiya..

I'm after some advice.

I've been diagnosed with coeliac disease for 6 years.

My 9 year old daughter suffers with her stomach, she gets pains, constipation, trapped wind and has acid too.

She was tested for coeliac disease a few years ago and I was told it was negative.

We are now under a new doctor who has put her on powders and he said that she is quite full of air, which must be uncomfortable.

So my question is, could she still be coeliac? The new Dr is trying the powders to see if it helps before sending her for a biopsy.

Part of me wonders if maybe she'd not had enough gluten for long enough prior to the test as we do tend to keep a lot of things gluten free for me.

I hate to see her in pain and suffering.

Any advice welcome!

5 Replies

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  • She must stay on ordinary food BEFORE them looking in her stomach/biopsy NO gluten free before the test or a false test result could be found. my wife has the same and the price of Gluten free food is about 2-3 times the price of normal food. Don't accept just a blood test.

  • She does need to be on a regular diet of gluten to test positive on the test, however it can still come out negative if she is on gluten and has a blood test. False negatives are common. If you don't want to wait for that just take her off all gluten for 30 days and then see how she feels when she tries it again. I don't have a real diagnosis because they messed up my tests and now when I get glutened I throw up for days so I can't physically eat it too get the tests redone.

  • If she has another test which is negative it may be worth a trial of a low FODMAP diet. This can help a lot of digestive problems.

  • Hi Roobie

    if you have coeliac disease, there is a good chance that your daughter may also have it. Perhaps a look at Coeliac Uk for general information.

    You could also consider keeping a food / symptoms diary, to see if you can identify any problem foods.

    It's always such a worry when a child is ill, I hope you can sort this out soon.

  • Thank you all for your replies.. I'm going to keep her on as much gluten as possible, rather than her having my generally gluten free stuff.. I hate to see her suffer so much, for her to want to stay in rather than go to the park as there are no toilets.. It heart breaking.. But out Dr seems totally on top of it, he said straight away that he felt she was coeliac but needed to do the powders and poo chart so that when she gets referred all that will already be done..thank you all xxxx

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