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Can I Have A Child Re Tested?

codygirl

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codygirl Newbie
codygirl
Posted

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
mommida
Posted

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
ang1e0251
Posted

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
ravenwoodglass
Posted

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
daphniela
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted
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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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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