Daughter's Ttg Suddenly Doubled

[greenbeanie]

I'm very discouraged. My daughter is almost six and was diagnosed almost two years ago. Her tTG-IgA was over 16x normal at diagnosis, and both DGP tests were positive then too. Her tTG fell all the way down to just barely positive within nine months, where it stayed for a year. Her GI would not run DGP tests for follow-up at first, despite repeated requests and info showing that the Univ. of Chicago celiac center recommended it, but he finally did order the DGPs last fall. Both were negative, indicating no ongoing exposure to gluten, though tTG was still mildly elevated. We then checked her TSH, which was normal. They wouldn't run other thyroid tests because of the normal TSH.

Anyhow, just got the news that her tTG rose to more than double what it was in October! We have no idea why. Again, no DGP tests to help clarify. I cook almost all our food from scratch, and any grain products we buy are from dedicated facilities. She has not been eating oats, though I do use Bob's Red Mill flours, which I realize may be processed on the same equipment as gluten-free oats. But I've been doing that all along, so it's hard to see why it would suddenly be a problem now.

Our house is almost entirely gluten-free, except for occasional take-out or packaged food that my partner eats and cleans up very carefully. We do not eat at restaurants and always bring our own food when we go places. Her teachers are very careful at school, and one has a child with celiac so they really understand. I am sure that she never cheats. She even refused (on her own) to touch dog treats at someone's house because she wasn't sure if they contained gluten. I checked all toiletries and have not used any new products recently. There are sometimes crumbs on the floor at her after-school program, but she is very good about washing her hands. And she was at the same program before and spent a whole year in preschool sitting on the rug at circle time with other gluten-eating kids and had no problems.

The only other thing I can think of is that she's getting her six-year molars and has been chewing on her fingers a lot lately. Even with frequent hand-washing, maybe she's getting enough cc this way? But she's only been teething for a few weeks, so it seems unlikely that that alone would have doubled her tTG.

We see the GI in two weeks. Here's my plan so far:

1) Insist that he orders DGPs for every single follow-up, and switch doctors if he won't. But this is the only pediatric GI anywhere near us, so switching wouldn't be easy.

2) Test for diabetes, though she doesn't have symptoms of it.

3) Return to 3-month blood tests to monitor changes more closely, instead of 6-month tests.

4) Stop using BRM flours in case oat cc has suddenly started affecting her.

Other ideas? Please help! I am just baffled.

[ravenwoodglass]

Is she doing any arts and crafts projects at school? Things like play-doh, white glues, some plaster mixes, some paints etc are not gluten free. Most likely stuff you have already checked but thought I would throw it out there.

How is she feeling? Is she showing any signs of feeling glutened? If not could there be an error from the lab?

I hope whatever it is that it gets figured out soon. 

[greenbeanie]

Thanks. It would be great if it were a lab error! But that's probably not too likely.

We have checked all art supplies at school (and home). They don't use play doh, paper mache, pasta necklaces, or anything like that in the classroom at all. The glue brand and finger paints they use are gluten free. They only did one cooking project (with veggies only), and we provided the cutting boards so we know they were safe.

Her sleep has been somewhat worse lately, and irritability has increased a little, but nothing dramatic or sudden. She had a really obvious reaction to inhaled wheat flour when some got in her face a year ago (it happened in a totally improbable way that we never could have predicted), and she was miserable for several weeks afterward. So I feel quite sure she hasn't accidentally eaten a gluten product, since her symptoms have always been really obvious. I do think the increased tTG corresponds to a slight gradual decline in how she's feeling, though. Ongoing exposure to low-level cc or a gradual reaction tiny amounts in gluten-free flours or processed foods seem most likely...but I have no idea where it could be coming from!

[Gemini]

I hate to say this, greenbeanie, but without doing proper follow up testing by the doctor, you may be looking for gluten exposure that does not exist.  You would think the money for all this testing was coming out of the docs pocket! 

 

Doing a tTg without the DGP is useless.  tTg does not, and never did, test for dietary compliance, as you well know.  You have to do the DGP every single time to make sure the elevated numbers are not from gluten exposure.  That is Celiac 101 and the doc should know this.  Also, testing just the TSH is another useless tool for seeing how the thyroid is doing. As someone with Hashi's, this drives me insane when they do this and it double pisses me off when they do this with kids.  She is growing and needs her organs to be functioning well. 

 

I really think that unless you get the doctor to do proper follow up testing, you may have to find another one.  It sounds like you have all bases covered with regards to lifestyle needs so looking into other AI conditions is just the right thing to do.  I wish you the best of luck!

[greenbeanie]

Thanks, Gemini. I think it's time for us to try Boston Children's Hospital. It's a bit overwhelming to go through another switch, another set of new insurance referrals and medical record copies, and another really long wait for an appointment (and long drive for appointments once we get in). And now that we finally have a doctor who at least listens instead of treating me like a crazy over-anxious mom, I'm reluctant to give that up for the unknown. But you're right - it doesn't matter how nice our current doctor is if I constantly have to fight for adequate follow-up.

After these recent results, our current GI probably will agree to order the DGPs every time from now on. But I doubt he'll do further thyroid testing. And I'm tired of having to convince doctors of every single thing - we just need a professional to look at the big picture and figure out what's going on for us! So, ugh. I'll try to work up the energy to deal with the insurance and referral mess tomorrow.

[StephanieL]

Just an FYI- You may not fine a trip to Boston helpful.  We went over the summer and it was VERY costly (which would be fine IF they haden't be completely clueless). 

 

Were the labs done by he same place?  Were they drawn and run at the same facility?  If not, that could cause a lot of issues.  

[greenbeanie]

Yes, all her labs for the last year and a half (the last four blood draws) were drawn at the same location and sent to the same place. Her original tests at diagnosis were from a different lab. But the tTG had been identical for the past three follow-ups in a row, until this recent more-than-doubling.

The level is still much lower than at diagnosis, though. She was over 16x normal at diagnosis and is "only" around 4x normal now. Still not good, obviously, but not completely alarming. Her DGP tests were about 3x normal at diagnosis and were both negative in October.