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Reliability Of Test Results?

Tony'sMom

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Tony'sMom Rookie
Tony'sMom
Posted

My daughter was tested for celiac a couple weeks ago due to family history and some symptoms she was having. To my surprise, her results were negative. She now has been given the diagnosis of IBS.

I've read on the boards that testing in kids under 5 is unreliable. Is this true and why does this happen? My son has a very clear cut diagnosis of celiac and his sister has many of the same symptoms he had at the time. I guess I'm just confused.

For those that are interested, her symptoms include- pasty, difficult to pass BM's, poor growth, stomach pain, irritabilty, very pale. She also has Cerebral Palsy so has motor issues and stability problems.

Thanks for any help.

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Ursa Major Collaborator
Ursa Major
Posted

What is wrong with these doctors? If the older brother has confirmed celiac disease, and she has all the symptoms of it, how can they be so ignorant and diagnose IBS? That is a junk diagnosis, anyway, as there is a REASON for a bowel to be 'irritated', and they're too lazy to figure out what it is.

If I was you, I would just put your daughter on the gluten free diet as well, it can't hurt her, and I bet she will get better. Personally, I am convinced she has celiac disease as well. The tests for children that little often show false negatives!

TCA Contributor
TCA
Posted

Is she still on a bottle or nursing or is she eating now? The pictures is a baby, so that's why I'm asking. I'm with Ursula, try the gluten-free diet and see if she gets better. My son had 2 negative biopsies, but the diet was so amazing in how much it's helped him. I don't know why they're so inaccurate. One thing I read said it's because the damage has not been going on long enough to show up yet in bloodwork and the damage is often in small patches in the biopsy and it's just missed. good luck!

Tony'sMom Rookie
Tony'sMom
Posted
  • Author

I'm sorry, I should have clarified. My daughter is going to be 4 in a couple of weeks. The baby in the pic is our youngest son.

Everything was fine until she got sick over the winter break. She had a couple of infections, went on a antihistimine/decongestant, and went downhill from there. It started with constipation. Now she takes a daily laxative and barely eats. We had to do a food diary and she's only taking in about 500 calories a day. So I'm starting to get worried about her. I think I'll take your advice and try the gluten-free diet anyway. It certainly can't hurt and I have all the stuff anyway.

Thanks again!

tarnalberry Community Regular
tarnalberry
Posted

Try her on the gluten-free diet and see how it goes. While testing is unreliable in those under 2, testing still gets some false negatives in older children and adults. The ultimate test is how she responds to the diet.

The other question, of course, is WHAT tests did they run and what were the results (numerically)?

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