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In Aus.... Need Some Advice

Guest sammya

By Guest sammya
in Meet Up Room

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Guest sammya
Guest sammya
Posted

Hi everyone,

I am writing for a bit of advice...... I have been confirmed to have Coeliac via Biopsy and i have DQ2 and DQ8 gene..

My question is that my 5 yr old son has got the DQ8 gene and according to the doctor has a slightly raised TTG result.. Should i be happy enough with these results as him being Coeliac as well?????

Doc said to put him gluten free, because of he's age he doesn't want to do the biopsy.

I know the TTG results are usually reliable and him containing one of the genes for coeliac makes it pretty much straight forward..

The other reason for making this query is that i myself am newly diagnosed ( found out 1 month ago) so i still learning.

2 of my other children also have the DQ8 genes but normal TTG and my 6 yr old daughter has the DQ2 gene and the other gene associated with it, but normal TTG. But, she has some of the symptoms and docs are looking at this...........

I also had normal TTG results when tested 2 months ago, they did biopsy when checking for ulcers which is what showed that i had Coeliac and not ulcers. ;)

Sorry, this is a long post, but, when it comes to my children i want to make sure i doing it all right!!!!

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nora-n Rookie
nora-n
Posted

Maybe you should post this in the pre-diagnosis folder here. It is much busier and they are very good at tests and genes.

Nora

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Ursa Major Collaborator
Ursa Major
Posted

It is a fact that the blood test is very unreliable in young children. All your kids have the genes for celiac disease, and it sounds like they all have symptoms. Personally, if I was you, I would make my whole house gluten-free. You might be surprised at the symptoms clearing up that you didn't even know were there in all of them.

By the time the blood tests are positive in little kids, their villi are pretty much destroyed and they are very ill. You don't want to wait that long.

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  • 4 weeks later...
amber Explorer
amber
Posted

I would take your son to a pediactric gastroenterologist. He is not too young to do a gastroscopy. My daughter had one at age 2. This is the only way to confirm whether he is a coeliac. You don't want him to have to go on a lifelong gluten free diet if there is no need to. If you have already started him on the diet you may need to give him wheat again. He needs to be eating the equivalent of 2-3 slices of bread per day for 4-6 weeks.

Which state of Australia are you in?

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