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Ttg Levels Still Positive

ufgrad98

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ufgrad98 Newbie
ufgrad98
Posted

My two daughters were diagnosed with Celiac Disease when they were 7 years old and 4 years old.  They were diagnosed 15 months ago.  We have taken every measure I can think of to make sure the girls are not getting any gluten in their diet.  The whole house is gluten free and I bought all new pots, pans, toasters, etc.  We don't go out to eat much but when we do, I make sure it is a super safe restaurant.  I am confident that the girls are not getting gluten in their diet.  I even make sure to buy gluten free shampoo, conditioner, sunscreen, etc.   My girls are also not eating other people's food or sneaking gluten.  I am absolutely positive they are not getting gluten in their diet!

 

My little girl's labs went right down and have been in the normal range ever since.  The older girl started at a ttg level of 128.  Her labs have been consistently weakly positive since then.  I can not get them into the positive range.  They are usually one point above the normal limit.  Why would her labs not be in the normal range yet?  The girls eat almost the same food at each meal so if one girl is in the normal range, why wouldn't the other girl be too?  So confused!  Any suggestions?

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cyclinglady Grand Master
cyclinglady
Posted

Have your doctor order the DGP IGA and DGP IGG tests. These seem to be better in determining dietary compliance. The elevated TTG? I recall a few posters saying that other autoimmune disorders could affect it. Hopefully another forum member can shed some light. But I would be happy to find that is the TTG result is almost normal. Some of us take a long time to get that TTG down depending on damage.

oni Newbie
oni
Posted

It took my 2 years for my ttg levels ti get to the normal range. Before my titer was normal, my doc said there was a possibility that I had another autoimmune disease or it was possible that I had refractory celiac. But I stuck to the diet and gave my body time to heal, eventually it did. I had blood tests every 6mo until it went into the normal range. I've heard stories from people that take 6mo for their ttg titers to come back negative, and stories from others that took several years. Seems like everyone is different.

If you are worried, chat with your doctor. Maybe there are some simple tests that can rule out other potential issues. It could also just take time.

I hope your daughters are feeling well soon. :)

StephanieL Enthusiast
StephanieL
Posted

We've been on the diet for 5 years.  We still have positive tTG's and were dx with thyroid issues too.  No one has any answers as to why or any recommendations.  

 

It just may take more time for your kids. Hope they do come down to normal for you!

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