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Blood Results - Advice Please

MummytoDan

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MummytoDan Newbie
MummytoDan
Posted

Hi

I posted here about a month ago to say my 2 yo had tested positive & received some great advice. He has since had his genetic results back to confirm diagnosis.

I have been to see the gastro consultant & dietician and they advised that his ttg levels were the highest that they've ever seen (5000) and it's going to take some time for him to get better.

I have tried to research ttg levels and ranges and can't really find anything that matches this result that was given today and what it means!

Can anyone shed any light please or give me some advice?

Thanks

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nvsmom Community Regular
nvsmom
Posted

Most labs tend to stop counting at a certain level. For instance, my lab's tTG IgA range was 0-20 and my result was >200. I have no idea if I was 201, 350 or 1000.  Not many lab's give an actual number beyond a certain point.

 

The ttG IGA can take months or years to get down to normal.  My last check was at about 9 or so months gluten-free, and my tTG was almost normal; I think it was 20.9... not sure though.  There are a few around here who took a few years to get back to normal, but most have normal lab's sometime in the first year gluten-free.  Everyone is quite different though.

 

Just keep him very strictly gluten-free and it will slowly come down.  You could always recheck it at 6 months or after a year gluten-free. If he had the DGP tests done, those tend to become normal faster than the tTG; the same goes for the EMA IgA.

 

Best wishes.

smilla Newbie
smilla
Posted

My daughter's levels were reported as >100 for both antibodies. It took over two years of strict to the point of obsessive gluten free for them to return to normal levels (<20). Don't be discouraged if they don't come down right away. As long as they are heading in the right direction you are doing a great job.

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