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More Testing? Need Advise

Luv2travel

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Luv2travel Newbie
Luv2travel
Posted

Hi,

My son is 16. He weighs 112lbs @ 5'7". His original celiac panel came back positive about 2yrs ago when his pediatrician ran some tests after we were concerned about his growth and development. He went off gluten in Sept of 08'. He was off Gluten until 4/2/09. After being back on Gluten for 3 weeks he was tested again on 4/21/09

4/21/09: Tissue Transglutaminase: 18

he went back on Gluten and then was tested again:

10/2/09: Tissue Transglutaminase: 52

10/28/09: Had a upper GI Endoscopy that was inconclusive and found no blunting of the villi

8/17/10: Tissue Transglutaminase: 84

His doctor wants to do another endoscopy. He has absolutley no symptoms except his weight. He doens't have a huge appetite and is very very athletic.

Do we assume he does have Celiac Disease? Do we do the scope again? Not sure if we should put him through another scope. Any advice would be appreciated. I'm wondering if it's possible to have a high celiac score and no other systems even after a scope?

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mushroom Proficient
mushroom
Posted

Hi,

My son is 16. He weighs 112lbs @ 5'7". His original celiac panel came back positive about 2yrs ago when his pediatrician ran some tests after we were concerned about his growth and development. He went off gluten in Sept of 08'. He was off Gluten until 4/2/09. After being back on Gluten for 3 weeks he was tested again on 4/21/09

4/21/09: Tissue Transglutaminase: 18

he went back on Gluten and then was tested again:

10/2/09: Tissue Transglutaminase: 52

10/28/09: Had a upper GI Endoscopy that was inconclusive and found no blunting of the villi

8/17/10: Tissue Transglutaminase: 84

His doctor wants to do another endoscopy. He has absolutley no symptoms except his weight. He doens't have a huge appetite and is very very athletic.

Do we assume he does have Celiac Disease? Do we do the scope again? Not sure if we should put him through another scope. Any advice would be appreciated. I'm wondering if it's possible to have a high celiac score and no other systems even after a scope?

There are many so-called 'silent' celiacs, who are shocked when they are diagnosed because they had no symptoms. There are others who have high blood antibodies who test negative on the scope. These people are most commonly referred to as gluten intolerant rather than celiac currently, although some believe they are 'celiacs in waiting.' There are some who are negative on all testing who are still gluten intolerant and who have symptoms which resolve on the diet.

If his Tissue Transglutaminase score is going up, it means he is developing more and more antibodies to gluten, which to me says he should stop eating it regardless of any additional testing. But if his physician wants to do another scope there is not a lot to lose - just be warned that it still could be negative.

cassP Contributor
cassP
Posted

is he still eating gluten?? if you dont want to do a full endoscopy, you may want to get him a more complete blood test first-> Antigliadin antibodies, & Endomysial Antibodies. because Tissue Transglutamase can be associated with other diseases. you want to make sure the doc rules out other diseases too.

but if everything's ok, and it could only be celiac- those numbers are positive enough. and remember that many celiacs dont have ANY gut symptoms. or maybe his gut wont act up for years- but if he IS celiac- the gluten is still damaging him.

ravenwoodglass Mentor
ravenwoodglass
Posted

Is your ped one who thinks that celiac can be outgrown? Some do still think so although we now know that isn't the case. We do not 'outgrow' celiac although it can take awhile for the symptoms to become a factor again. Meanwhile the antibodies can attact pretty much any organ they choose including the brain. IMHO putting him back on gluten was a big mistake if he was a diagnosed celiac.

Luv2travel Newbie
Luv2travel
Posted
  • Author

Thanks all for the advice. Very much appreciated. We decided to take him off Gluten entirely. So now I start my searches for Gluten free recipes that teenagers would like. He is in total agreement as he is hoping it has something to do with him not be able to gain weight. Thanks again to all!

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