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Lisa

By Lisa
in Meet Up Room

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kareng Grand Master
kareng
Posted

Hi :)

My son (9) has just had a positive blood test for coeliac and is waiting for the biopsy. In the mean time I've been reading everything I can. It's been quite a shock, but this forum has been a real help. Reading peoples posts, and realising we're not alone in this and we'll get the hang of it has really helped. My daughter and I are being tested tomorrow, but I'm not worried anymore - we'll deal with this as a family anyway.

Thanks for being such a friendly supportive community :)

Welcome, Alex & his sister's mom!

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Jestgar Rising Star
Jestgar
Posted

Hi :)

My son (9) has just had a positive blood test for coeliac and is waiting for the biopsy. In the mean time I've been reading everything I can. It's been quite a shock, but this forum has been a real help. Reading peoples posts, and realising we're not alone in this and we'll get the hang of it has really helped. My daughter and I are being tested tomorrow, but I'm not worried anymore - we'll deal with this as a family anyway.

Thanks for being such a friendly supportive community :)

Welcome to the group. :) There are a lot of great people here with a lot of great information.

Keep in mind that a positive blood test is positive, whatever the biopsy says. If by chance the biopsy is negative, just be glad that the damage hasn't progressed too far, and start teaching your son to eat gluten-free.

Alex'sMum Newbie
Alex'sMum
Posted

Kareng - thank you :)

Jestgar - , I've been reading up on that - is there no such thing as a flase positive on the blood test then? The paediatrician has referred him to the dietitian already, so as soon as the biopsy is out the way we can start the gluten-free diet.

sb2178 Enthusiast
sb2178
Posted

There's such a thing, but it's incredibly incredibly rare and usually points to Crohn's disease. It also depends on which test.

EMA really equals no such thing as a false positive

TTG, very rare false positive, usually pointing to Crohn's, and there's occasionally both diseases present

AGA, it happens

DGP, very very rare false positive

The course of the disease also tends to be quite slow to show up in testing (my metaphor is to say our tests, especially the biopsy, look for stage three cancer instead of stage one), so it's very typical for people to have a negative that eventually turns positive. Kids at high risk often start showing abnormal bloodwork two or three years before they would have a postive bloodwork, and low positives often align with less intestinal damage. Patchy damage is harder to capture in the 8 mm from the size of a tennis court that is examined via biopsies.

Hope that helps.

Lisa Mentor
Lisa
Posted
  • Author

Welcome Alex's Mum....so glad you found us. :)

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