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Lisa

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kareng Grand Master

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

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

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

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

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

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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