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Laliemja added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseTtg Positive Then Neg Then Positive Again?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?
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