Question About Recovery And Ttg On Gfd

[cd42]

My 5 y.o. daughter was diagnosed last summer with Celiac Disease (both anti-TTG and biopsy positive) and has been on a gluten-free diet since. Her symptoms, which were fairly mild, went away quickly. She also developed anemia and that recovered within 6 months on the diet. Her serum ttg remains high after 9 months and hasn't come down at all (125 at last test). The doctors seem puzzled. Has anyone else experienced anything similar with their children? If so, did the serum levels go down eventually? I'm also interested in hearing what others have seen in their children's ttg levels after being put on the diet. The papers I have seen on the topic suggest that although it can take a long time to get back to normal levels, most people see dramatic improvement in this time frame--however, all those studies seem to be with adults.

[cd42]

Not a single reply....should I take this to mean typically children don't have a ttg test during the recovery period? I'd really be interested in just hearing others experiences with TTG numbers after 6 months on a gluten-free diet.

[Cara in Boston]

My son's levels didn't go down after 6 months. We thought we had mastered the diet, but now we are not so sure. His symptoms are almost 100% behavioral so it is difficult to tell sometimes if he is just being bad, or if he is being gluten-bad . . .

The MD told us to "step it up" a bit - no more gluten-free foods that have been "processed in a facility that processes wheat", no more eating out unless it is a dedicated gluten-free place, etc. etc. It has been almost 6 months now and he goes back for more testing in another week. We still see the extreme behavior about once a month (but it can last for days) so we are pretty sure we haven't yet figured out our problem. Not sure what our next steps will be . . .hopefully there is at least some improvement in the numbers. The doctor did say that sometimes it just takes time with kids. She mentioned the possibility of doing a repeat endoscopy to see if things are healing.

Cara

[Darn210]

My daughter had a follow-up tTG 6 months after being on the gluten free diet. Hers were in the normal level by that time.

I have seen some kids (on this forum) where the tTG's were still elevated but had at least come down some. Has your child's level not come down at all?

It's good that her symptoms are resolving. I would double check for gluten sources/cross-contamination and have her levels checked in 6 months.

You might also check to see if the lab reports a tTG of 125 when it was really higher than 125 . . . that was just the point of where they stop measuring . . . it's high positive. I have had that occur on a different type of test for myself, so the next time I had it checked, it was still positive but I couldn't tell if I had improved or not because I had still reached their max value that they measure. Did that make sense?

[cd42]

My daughter had a follow-up tTG 6 months after being on the gluten free diet. Hers were in the normal level by that time.

I have seen some kids (on this forum) where the tTG's were still elevated but had at least come down some. Has your child's level not come down at all?

It's good that her symptoms are resolving. I would double check for gluten sources/cross-contamination and have her levels checked in 6 months.

You might also check to see if the lab reports a tTG of 125 when it was really higher than 125 . . . that was just the point of where they stop measuring . . . it's high positive. I have had that occur on a different type of test for myself, so the next time I had it checked, it was still positive but I couldn't tell if I had improved or not because I had still reached their max value that they measure. Did that make sense?

As far as we know the level has not come down at all, but you are correct it turns out that the levels went from >123 to >146 to exactly 126 in three consecutive tests. I guess we don't know whether >146 is actually higher than >123, so it is possible that it is coming down, but doing so slowly.

[cd42]

My son's levels didn't go down after 6 months. We thought we had mastered the diet, but now we are not so sure. His symptoms are almost 100% behavioral so it is difficult to tell sometimes if he is just being bad, or if he is being gluten-bad . . .

The MD told us to "step it up" a bit - no more gluten-free foods that have been "processed in a facility that processes wheat", no more eating out unless it is a dedicated gluten-free place, etc. etc. It has been almost 6 months now and he goes back for more testing in another week. We still see the extreme behavior about once a month (but it can last for days) so we are pretty sure we haven't yet figured out our problem. Not sure what our next steps will be . . .hopefully there is at least some improvement in the numbers. The doctor did say that sometimes it just takes time with kids. She mentioned the possibility of doing a repeat endoscopy to see if things are healing.

Cara

Thanks for your reply. I'd be interested in hearing how your son's tests come out--best of luck!

[StephanieL]

My DS's levels were as follows:

Original- 129

6 months gluten-free- 48

12 months gluten-free- 38

18 months gluten-free- 36

So you can see we are still not at "normal". After ripping through his diet testing products with EZ gluten strips and a bunch of other things at 12 months we thought we found the culprit in his mustard. We were sure his levels would be normal at 18 months. Nope.

We did a few things. #1, asked our Dr. for a more specific test. That came back normal! YEAH! We also looked into a thyroid issue. So between these two things, we are hoping 24 months is going to be the one!

Good luck!

[Ollie's Mom]

I'm not sure what it's like with those blood tests, but I know with the analytical results we get on water and waste samples that when we get a > symbol it means that the sample wasn't dilute enough (or wasn't diluted enough by lab staff) to get an accurate result. ( the test methodology is only good over a certain concentration range)

Based on the results you provided, there's no way to know what the starting value ( or second value) was in absolute terms. The only absolute value was from the last test so you can compare future values to that one ( provided there are no > signs preceeding the next results). But I'd say the values seem to be going down if you got an absolute result with this last test. Hope this makes sense.

Good luck.

[Nannu]

Hi,

I had read your post earlier itself but had to rush out station for some family emergency. I wish to share with you that my case is exactly similar to yours, below is my thread that you might be interested to read and get some information. I am sure it will help. Sorry for keeping the reply really short, if you have any specific questions, please feel free. How much time i have spent on this forum, i feel there are cases like us (though rare) who take really long time to heal and get normal TTG results and we need to keep a lot of patience other than doing right.

I hope you get your answers.

https://www.celiac.com/forums/topic/89872-confused-frustrated-upset-and-tired-of-high-ttg-levels/

Take care

Nannu

[Nannu]

My DS's levels were as follows:

Original- 129

6 months gluten-free- 48

12 months gluten-free- 38

18 months gluten-free- 36

So you can see we are still not at "normal". After ripping through his diet testing products with EZ gluten strips and a bunch of other things at 12 months we thought we found the culprit in his mustard. We were sure his levels would be normal at 18 months. Nope.

We did a few things. #1, asked our Dr. for a more specific test. That came back normal! YEAH! We also looked into a thyroid issue. So between these two things, we are hoping 24 months is going to be the one!

Good luck!

Hey StephanieL,

We have had discussions earlier, this time you mentioned, which specific test did your Dr order which came back normal? Sorry for interrupting this thread. Even we did anti gliadin IGA test and that was absolutely normal, but later on we discovered that its not very sensitive and TTG

levels in the only ultimate measure.

Thanks

Nannu

[StephanieL]

We have had discussions earlier, this time you mentioned, which specific test did your Dr order which came back normal?

Demeadiated Gliagin protein is the secondary test I insisted upon (at the guidance of Gemini here on the forum who I have thanked a million times over). It is a more expensive test and had to be sent out. My Dr. didn't even know about it but I asked her to look into it and she did and we had it run. She said next time we have to run labs we will have to decide which lab to go with. The test is support to be more accurate for dietary compliance. It may be worth looking into for you, Nannu. I think of you often and wondered if you had any new news. Hang in there!

[Nannu]

Demeadiated Gliagin protein is the secondary test I insisted upon (at the guidance of Gemini here on the forum who I have thanked a million times over). It is a more expensive test and had to be sent out. My Dr. didn't even know about it but I asked her to look into it and she did and we had it run. She said next time we have to run labs we will have to decide which lab to go with. The test is support to be more accurate for dietary compliance. It may be worth looking into for you, Nannu. I think of you often and wondered if you had any new news. Hang in there!

That's great dear. For us, we did the testing only in Feb this year and Dr has asked us to repeat the tests after 6 months. We are continuing as it is as of now and will see which all tests can be done after six months. I guess i did browse through the catalogue of the lab here to check if this test was available but it wasn't may be they add this test in months to come.

Bye for now and you take care.

Nannu