Ttg Still Positive And Stopped Falling, But Negative Dgp?

[greenbeanie]

My daughter was diagnosed 17 months ago (at age four) with a positive biopsy and positive blood tests on the whole panel they ran. Her tTG-IgA was over 16x normal, her DGP-IgA was about 2x normal, and her DGP-IgG was over 3x normal. She had an immediate response to the diet, and her tTG fell all the way down to just under 2x normal within the first nine months. Then it leveled off and would not drop further.

Her doctor would not order the DGP tests again until recently, but this time he finally agreed to order them. Both of her DGP tests are now negative, with the DGP-IgG recorded as <10, which is the lowest value this lab reports. So we are confident that she is not getting gluten in her diet. However, her tTG has still not fallen any further! It's considered a "weak positive" by the lab. She had celiac symptoms from early infancy, and she is so incredibly much better now, but I do still feel like things aren't quite right. It's hard to tell if the remaining fussiness is just her personality, since she really never had a symptomless period before diagnosis. She did have a positive lactose intolerance breath test recently, but she eats very little dairy anyhow, so I don't feel like that's a big concern.

I guess my question is what it means to have a low positive tTG that has stopped falling, while the DGP tests are squarely negative. I've seen a bunch of info about the opposite - positive DGP with negative tTG - but I can't find anything about this situation. If her tTG was still positive but continued falling, I wouldn't be concerned and would just assume it takes her body longer to heal. But it hasn't fallen at all since March.

Her liver enzymes were normal at diagnosis, and she has no symptoms of diabetes or Crohn's. We are going to do a thyroid panel at the next blood draw, at my request, but her doctor didn't even seem aware that anything other than continued gluten ingestion can ever cause a positive tTG. (I showed him the relevant FAQ page from the Univ. of Chicago Celiac Center website, which is why he agreed to check her thyroid.) She really doesn't have any obvious symptoms of a thyroid problem, though.

[SMRI]

Other than fussiness, what else is wrong with her that makes you concerned.  I have to say, 4 year olds are not all that much fun in general .  It could just be her age.

[greenbeanie]

The fussiness could certainly just be her age, and it is a million times better than it was before, but what I am concerned about is the fact that her tTG is still positive and stopped falling, despite evidence (the lowest possible negative DGP tests) that she's not getting exposed to gluten. Do some kids just have positive tTGs forever, despite evidence that they are following a strict gluten free diet? I guess I'd be less concerned if she were an adult, but she's five and a half years old and it seems like she should still be healing (tTG should still be falling).

[nvsmom]

The tTg is usually one of the last to drop and it can be very slow.  I know at a year gluten-free mine was still abnormal but not by much, and my EMA was completely normal.  There have been other members of this board whose ttG stayed elevated for a few years.  It just takes longer for some of our bodies to calm down.

 

That being said, I think it's always wise to keep your eyes open for other problems that can cause a high ttG.  The ones I know are celiac disease, liver disease (she's quite young for that), crohn's & colitis (unlikely if she is doing much better), thyroiditis, diabetes (type 1), and infections.  My guess is that she is just slow to have her tTG come down.  Its hard to wait but sometimes that's all we can do.  

 

Best wishes.

[greenbeanie]

Thanks, Nicole. I will try to get the EMA run next time too, as that might help clarify what's going on. She did not have the EMA run at diagnosis - her doctor said it's rarely positive in young children, and her biopsy and other blood tests were all strong positives, so there wasn't any doubt about her diagnosis. So we wouldn't have a previous result to compare it to, but it might still be a useful piece of the puzzle now. 

 

We're going to wait a while before getting the thyroid tests run, since she'd had lots of blood draws and shots lately, but hopefully her tTG will start dropping again or we'll have some other answers in a few months. I am very relieved that the DGPs are negative now, so at least we're not driving ourselves crazy with thinking that she's getting hidden gluten somehow. 

[StephanieL]

We are 5 years gluten-free and my DS's tTG's are still not normal.  After 3 years gluten-free we looked into the whole thyroid thing- He had hypo- tTG's did drop some after that but again, still not normal. Lead us all the way to seeing Dr. Fassano in Boston (which was useless but that is another story).  

We reevaluated and called ALL companies we use. We tested (at $13 a pop) any foods we were not assured.  We still have elevated levels.

 

I would look into the thyroid testing ASAP. I would also strongly  suggest next time you have blood drawn, you get it sent to 2 different labs.  I would have it done where you normally do and sent to Mayo as well and compare those results as well. They test may be different but you may be surprised with the results drawn at the same time sent to two different labs.