Ttg Positive Then Neg Then Positive Again?

[Laliemja]

Hi all. To give you some of our history- my 6 yr old DD has Turners syndrome and due to the increase rate of celiac in Turners syndrome, her Drs have been screening for celiac since she was at least 4.

In 2010 she returned a positive ttg of 37 (under 19 is neg) and the Dr ordered a repeat blood test to be sure which came back as neg. (I have no idea what tests were done exactly as she gets tested for so many things) She seemed to be symptom free so I assumed she was fine and ignored the positive test.

In June 2012 she had another test done which was again positive for ttg of 51 however we were not told of this result until 6 months later by which time she was complaining most days of having a sore tummy and feeling sick, having mouth ulcers that wouldn't clear for several months and loose BM. It came as no surprise to me when we were informed in Dec 2012 that the test done back in June had been positive. So the Dr ran yet another test to double check (i have no idea why they keep double checking) in Dec which was neg! I don't think her diet had changed at all from the first positive test through to now so my question is...

Has this happened to anyone else? And how is it possible to have ttg go from positive to neg without change to diet?

At present she is having problems with severe tummy pains everyday, especially after breakfast and an x ray showed she is terribly constipated. I had her tested again a couple of weeks ago (just ttg) and the result was a 15, so neg. Also she is very short and extremly skinny, has barely been on the growth chart for most of her life, but we always assumed this was a result of Turners syndrome.

I don't know if her Dr (both pead and an endocrinologist) are putting off doing a biopsy because they don't think it's celiac or because they want to be certain before putting her through it (she also has a few heart defects).

If you were me, what would your next move be?

[shadowicewolf]

Has the doctor run the other blood tests as well?

[Laliemja]

I'm not sure about other blood tests. There are 3 different Drs who have run the tests and the pead and endocrinologist are testing so many conditions at once i dont even ask what they're for, just assumed they knew what they were doing.

I know that the most recent test that the GP ran was only ttg as I only requested this since it's the one that has been showing positive in the past.

I'm fairly sure her endocrinologist has run more than ttg only I don't know which ones, only that they weren't positive. I will find out at her next appointment in 5 wks and make sure she has run every test.

At the moment I'm very frustrated with both the pead and endocrinologist as neither can give me answers but just want to continue with blood tests every 3 months.

[Deaminated Marcus]

The other Celiac test to do (again?) are DGP-IgG  and DGP-IgA.

 

I started asking for copies of my reports which helped me find another problem

a specialist wasn't telling me because that organ wasn't his specialty.

 

It's good to ask for copies of reports and tests and put them in a binder.

[notme]

have you tried feeding her gluten-free?  my grandson has all kinds of symptoms and responds well to the gluten-free diet.  but his test (and i do not know exactly what test - it was done at his general pediatrician)  came back negative so they feed him 'regular' food and (poor guy) he still has issues  have they tested her for lactose intolerance?

 

edited to add:  if her test came back positive, it shouldn't change, especially since you didn't change her diet it should still be positive.  wierd.

[frieze]

did they use the same lab for both tests? and how close were they ?

[Laliemja]

Thankyou for all your replies.

I do have a medical binder just for my DD but so far have trusted the Drs when it comes to blood tests. I will certainly be getting copies of these at her next appointment and adding them to her binder. I'll make sure she gets those (or has had those) DGP tests too.

No, I haven't tried feeding her gluten free yet. Her GP guessed that her fluctuating positive/neg result might be from having less gluten before some tests, even though I haven't knowingly made her gluten free or lite. She has an appointment in 4 weeks with her endocrinologist and will mostly likely get another blood test, so for now I'm packing her full of gluten. She does have a couple of snacks that just happen to be gluten free so I switched those to high fibre wheat snacks to hopefully help her constipation and up her gluten intake and I'm also making sure she gets pasta for dinner at least half of the week. I started giving her extra gluten containing foods 3 days ago and after the first day her nose was running (but she doesn't have a cold), her tummy pains are still every day but now they're after and often during every meal and her behavior is shocking! She has been diagnosed ASD (though very high functioning) and has a lot of anxiety and tends to have melt downs when things like her routine are messed up a little, but for the last 3 days she has been having meltdowns all the time over very minor issues. She also has Sensory processing disorder, and she's is hypo sensitive to touch (she doesn't know her own strength and is always unintentionally too rough, can rarely tell me she's sick or in pain unless she has an obvious physical symptom etc) so the fact that she's actually saying her tummy hurts means it's probably extremely bad.

For the first tests in 2010 when she was positive and then neg, they did use the same lab. I don't recall the difference in timing between the tests though. I will find this out when I get the reports hopefully soon. The next test that came back positive in 2012 was done at the same lab as the original tests in 2010. There was 6 months between then and her next test which was neg but done at a different lab (which apparently the endocrinologist has more faith in as it's in the hospital she works in). I will be using this hospital lab again for her next test in June.

It's looking like it's going to be a rough month for her (and our family!) and I'm hoping she gets a positive test in June just so we can at least be referred to a GI and maybe get the biopsy done. My gut is telling me she has celiac but not knowing for sure and having these unusual test results is driving me crazy!