Ttg Question

[e&j0304]

My friend's son has been dealing with issues likely related to a gluten intolerance for many years. He had some incompetent doctors initially who ran the wrong tests and told him he did not have celiac. She put him on a gluten-free diet anyway and he got much better, but is still not 100%. He is still dealing with almost daily stomach pains and occasional very painful mouth sores. He also complains of chest pain due to reflux.

He finally got the right testing done after 4 months on a gluten free diet because his current dr. who is very informed about celiac still wantd to have them run. I believe she said his TTG was 8.4 and the range for positive stared at a 7.

Is TTG specific to celiac or could it indicate anything else? She is concerned that he may have Crohn's Disease. The hospital that he is going to wants him back on gluten for 2 months before they will scope him. She is unsure about what she is going to do about that. My friend is concerned that her little boy may have something else going on since she has been VERY careful about the diet and he is still sick.

Also, I recently heard that there is a cut-off of 2 for a TTG in children ages 0-1. Has anyone else heard that? I know all labs are different, but from what I've read the general cut-off for a positive TTG is 7. I'm just wondering about my own kids levels since our doctors we had at the time were idiots.

Anyway, thanks for any help. She is stressing herself out over all of this and could use some advice.

Oh, please excuse the hairloss picture in my avatar! I had it on there because I posted a question another thread about thyroid and celiac and wanted some opinions!

[wolfie]

If his ttg is still positive after 4 months gluten-free, I would say there is no doubt that he has a problem with gluten. If they want to do the scope to check for Crohn's, eating gluten shouldn't matter for that. Why make the kid miserable and put him back on gluten for that? He is obvously doing better gluten-free. As to why he is still not feeling 100%.....it can take a while (1-2 years) to heal completely; he may have some other food sensitivities (lactose, soy, etc); or maye he does have Crohn's or some other digestive issue.

My son's ttg was 222. He did still have the scope b/c I knew well enough at that point that he couldn't go gluten-free until after the scope b/c of the way I found out about myself & gluten. Obviously his biopsy came back positive. He still does have some stomach issues every now & then. Not sure if he was accidentally glutened or whether he is just still healing. We are repeating his bloodwork at a follow-up in January.

Good luck to your friend & her son.

[Nikki2003]

If his ttg is still positive after 4 months gluten-free, I would say there is no doubt that he has a problem with gluten. If they want to do the scope to check for Crohn's, eating gluten shouldn't matter for that. Why make the kid miserable and put him back on gluten for that? He is obvously doing better gluten-free. As to why he is still not feeling 100%.....it can take a while (1-2 years) to heal completely; he may have some other food sensitivities (lactose, soy, etc); or maye he does have Crohn's or some other digestive issue.

My son's ttg was 222. He did still have the scope b/c I knew well enough at that point that he couldn't go gluten-free until after the scope b/c of the way I found out about myself & gluten. Obviously his biopsy came back positive. He still does have some stomach issues every now & then. Not sure if he was accidentally glutened or whether he is just still healing. We are repeating his bloodwork at a follow-up in January.

Good luck to your friend & her son.

My daughters Ttg was 80 and the normal for the lab is <20. Havn't had the follow up blood work yet due to 3 cheerios she ate.

[MomandDadtoOGS]

I just saw my daughters pediatric GI who specializes in Celiac. She said normal TTg is <20. My daughter was dx on 10/31/06 by blood and biopsy. Her TTg level was 480. Her endoscopy showed significant damage to the small intestine. She just turned 3 on 12/10. We had her tested at 14 months and just 6 months ago and those times were negative.

[MomandDadtoOGS]

What's the highest ttg level anyone has ever heard of? I thought my daughter at 480 was crazy!

[chrissy]

my kids have been testing by labs that use 20 as the cut off point and also by labs that use 7 as the cut off point. my kids levels were fairly low----i assume we caught the celiac early. the highest TTG one of my girls has had was when she was in the hospital for 3 months and a dietician was working with her-----she assured me they knew what they were doing. HAH!!