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Can I Have A Child Re Tested?


codygirl

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codygirl Newbie

My friend advised me to get my son tested 3 years ago as she recognised main things I mentioned about my son when her son was diagnosed extreme wind and soft to runny BM's, sore stomache and "pot belly stomache" very tight abdomin, since he was born lack of stamina even though active. Now my elder sister has been diagnosed with Celiac and have found out it can be hereditary is there any point in retesting my son? Should I get tested myself or another of my children who I can tick quite a few of the boxes for? Please could I get some advice on what relativeds should do.

I have witness first hand through friends child what a difference the gluten free diet makes to suffers, so I know how important this issue is.


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mommida Enthusiast

The Celiac blood panel is known to be faulty especially when the patient is 24 months and under.

Celiac can be "triggered" at any age. Relatives with a higher risk need to be screened regularly.

ang1e0251 Contributor

Why not consult your dr? Explain your family history and the symptoms you've noted. You didn't say what the test results were 3 years ago. A positive test in one child should cause the whole family to be tested. There are problems with testing accuracy though so you will need all your ammunition when talking to the dr. Writing down all your points of concern is a good way to get in all you want to say in the 2.2 seconds the dr is willing to spend with you.

ravenwoodglass Mentor

Your child can and should be retested. So should all the rest of your family members even if not showing symptoms. If any that are negative should develop symptoms later on celiac should be the first thing they test for, not the last.

daphniela Explorer

If the child is really young and having symptoms, the doctor can do a gene test to diagnose Celiac.

ravenwoodglass Mentor
If the child is really young and having symptoms, the doctor can do a gene test to diagnose Celiac.

Gene testing cannot diagnose celiac. It can tell you what associated genes you may carry and can be part of the diagnostic process but they are not diagnostic in themselves. In addition many times only DQ2 and DQ 8 are currently tested for but there are at least 7 more genes that are associated with celiac disease. My DD was diagnosed by both positive bloods and biopsy but then after a couple of years gluten free decided to do gene testing after she entered college. We do not have one of the 2 most recognized genes, in fact the one I carry two copies of is a rare gene in itself in our population. It is recognized as a celiac gene in the Middle and Far East but not here in the US. As a result she was told she couldn't have been celiac despite the postive blood and biopsy and now is back on gluten and attributing her health issues to 'stress'. And she was tested at one of the best hospitals in the country so I really can do nothing to convince her to go back to being gluten free.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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    • Churley
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