Ttg Still Positive After 6 Mos.

[greenbeanie]

How long does it normally take for a young child's tTG to go down to normal? My daughter is 4 1/2. Her tTG was 65 at diagnosis and was still positive at 9 after six months (with anything over 4 considered positive). Obviously we're happy it decreased significantly, but the doctor expected it to be negative by now, and of course that's what we were hoping too. I know that super-high levels often take longer than six months to become normal, but hers wasn't super-high to start. On the other hand, we suspect that she's had celiac since infancy and was undiagnosed for most of her life, so even though she's young she may have had it for quite a while. She was not eating much gluten at the time of her original level of 65 - just one small serving per day for the month before testing, and only a few servings per week before that.

My initial response was to be quite discouraged by today's results, but maybe I'm overreacting. Our house was totally gluten-free for the entire six months between tests, we've replaced all the appropriate kitchen stuff, we cook almost everything from scratch and only eat a few processed foods from dedicated facilities, all toiletries are gluten free, etc. She does attend daycare, but they have been outstanding at reducing the potential for cc and switched to all gluten-free art supplies, serve only gluten-free snacks, make sure her lunch space is clean, have the whole class wash hands frequently, and basically do everything reasonably possible to keep a celiac preschooler safe.

Does it sound like it could just be normal for her tests to take longer than six months to become negative, or is it a sign of ongoing gluten exposure? We have been extremely strict about her diet. The only somewhat-risky thing we did was to try very small amount of gluten free oats a few times after the first five months. She had no apparent reaction to the oats (and always had obvious symptoms from wheat before), but maybe that little bit could be just enough to keep the numbers positive? We're going to test again after three more months oat-free, then do an oat challenge if her tTG has become negative by then.

[blmoreschi]

I thought the TtG was supposed to be under 20, not 4?

 

No matter which is right, you must be doing a great job to get it down that much in 6 months! And I don't think the oats would affect that if they are gluten-free oats. I think some Celiacs just can't tolerate oats, but they do not have gluten in them and so therefore should not affect the tTG number.

[greenbeanie]

Thanks for the encouragement. This lab's reference range shows anything over 4 as positive, but I know other labs use different ranges. I'm not sure if that reflects an actual difference in the labs' measurement methods or is just a matter of their reporting criteria.

Our pediatric GI clearly thinks that for the small percentage of celiacs who are sensitive to pure oats, the oats can cause a rise in tTG (not just symptoms that mimic gluten exposure). Does anyone know if there is firm data on this yet? I know there have been mixed views on oats for a long time.

[nvsmom]

The tTG tests are slow to come down.  Did they test the DGP (deaminated gliadin peptides) as that one is a better test for checking how gluten-free you are - it tends to go up and down faster. How about the EMA IgA? That one shows advanced damage and usually comes down before the tTG tests too.

 

The tTG IgA can also be elevated from other health problems like thyroiditis, diabetes, chronic liver disease, crohn's, colitis, and infections. When those are a factor, they will often keep the tTG elevated at a low level.

 

Or it could just be taking a long time to come down. i was gluten-free for over a year and my ttG was still abnormal. It finally almost touched normal when I was on some mild steroids for another health issue. It can take a long time to normalize.

 

I would request the DGP and EMA tests as well the next time the doctor wants to check it. That could give you a better idea of whether it is cc or just a slower recovery.

 

Best wishes.

[greenbeanie]

Thanks, Nicole. She had both DGP tests run at the time of diagnosis (but not EMA), and I had thought they were running all three again for the follow-up, but it turns out they didn't. I'm sure the move to electronic medical records has advantages for efficiency, but it's annoying that patients never get to see their actual lab slips anymore! I'll try to get them to do the whole panel next time. She doesn't seem to have symptoms of any other diseases and had a normal metabolic panel and CBC last summer, but we'll look more into the other possibilities if the tTG doesn't come down soon.

 

I have a question about the lab reference range thing in general, but I'll post it in another thread. The way the reference ranges are calculated actually does seem to matter quite a lot in terms of how quickly I'd expect the numbers to fall.

[Cara in Boston]

My son was still positive after 6 months (diagnosed at age 5) and the doctor said "as long as it is going down, we are successful."  He was negative at his one year test and has been since.  I wouldn't worry too much about it.  It WOULD NOT be going down if she was still eating gluten.

 

My blood test were negative after just a few weeks being gluten free.   It is different for everyone.

[greenbeanie]

I am feeling much better about her results now that I realize (from info on another thread) that her tTG level actually was very high at diagnosis, especially for a young child. I'd been seeing that some people had numbers over 100, so I'd thought that in comparison 65 wasn't all that high, which led me to expect it to come down to normal more quickly.

 

However, since our lab has a reference range of 4 and up as positive, her initial level was actually more than 16x normal at diagnosis! From that perspective, coming all the way down to just over 2x normal seems like great progress for six months. 

[nvsmom]

That is a great improvement.  

[GwenO]

We are at almost two years.  My daughter's have gone down steadily but still nowhere near where I thought.  Our doc says the same:  the numbers have gone down steadily so it's all good.  Frustrating though because we are very careful.