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Update On My 4-yr Old: Ttg Results

pitnlala

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pitnlala Newbie
pitnlala
Posted

So I had a follow-up with my daughter's Dr. today and asked a ton of questions. This was the first chance I had to speak with him since we first heard that she tested positive for Celiacs. Her Ttg level was 153. He has referred us to a specialist on the 22nd and he said at this point I may know more about Celiacs than he does, simply because I have spend countless hours researching it since last week.

My wife and other daughter were tested today, and I am getting tested tomorrow. With a reading of 153 do you think the specialist will say the biopsy is necessary? Or is a reading like that generally mean it's a sure thing. I hate to put my 4-yr old through that if it isnt needed.

I know I will get my answers next week, but I was just trying to gage what others have been told.

Thanks, Micah

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Nic Collaborator
Nic
Posted
So I had a follow-up with my daughter's Dr. today and asked a ton of questions. This was the first chance I had to speak with him since we first heard that she tested positive for Celiacs. Her Ttg level was 153. He has referred us to a specialist on the 22nd and he said at this point I may know more about Celiacs than he does, simply because I have spend countless hours researching it since last week.

My wife and other daughter were tested today, and I am getting tested tomorrow. With a reading of 153 do you think the specialist will say the biopsy is necessary? Or is a reading like that generally mean it's a sure thing. I hate to put my 4-yr old through that if it isnt needed.

I know I will get my answers next week, but I was just trying to gage what others have been told.

Thanks, Micah

I think it will depend on the doctor. Alot of us feel the blood is enough but others still rely on the biopsy. My son's ped. gastro. said that some labs have not quite mastered these tests and the numbers come up too high inaccurately. Three months aftter diagnosis my son's numbers were still way high and the doc. said that while they would still be somewhat elevated there should have been a decline. So he sent them out of state to a specialty lab and the results were different. They were still positive but not as "through the roof" as my lab.

Nicole

ryebaby0 Enthusiast
ryebaby0
Posted

Whether your specialist says a biopsy is necessary does not actually mean you have to have one done. IMHO, a tTg of 153 from a reputable lab certainly doesn't leave any ambiguity, and tTg is very specific. The difficulty with biopsy is that there is always a chance that it will just happen to miss a damaged area. Ask your doctor what he would do if the biopsy came back negative. If he'd still want to try a gluten-free diet anyway, maybe the biopsy does not have a lot of value in your daughter's case. That being said, my son has had 4 'scopes now, and if it is done at a facility that works with kids, and does lots of scopes, it is not a cause for tremendous worry. It causes much more anxiety for you than for your child!

My son's tTg was 153, and 65 after 4 months gluten-free. It didn't return to a normal level until almost 16 months (although clinically he was much better long before that)

Joanna

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