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Member Since 10 May 2013
Offline Last Active Jul 20 2015 05:35 PM

Topics I've Started

Daughter's Ttg Finally Normal!

17 June 2015 - 04:19 AM

Hooray! It took two years to get it into the normal range, from over 16x the upper limit of normal at diagnosis. Both DGPs are normal now too. We were stuck at low-positive tTG for a long time.

What finally did it was eliminating several GFCO-certified products that had detectable gluten at levels well under 20ppm. Once we did that, we got her tTG into the normal range within eight weeks. Phew, what a relief! And she is doing great - the difference in her mood with this last decrease in tTG is very noticeable. She's never been this happy in her entire life!

Juvenile Rheumatoid Arthritis, Ttg, And Esr?

05 April 2015 - 05:45 AM

Does anyone have experience with a child who has both celiac and juvenile rheumatoid arthritis? I'm wondering specifically about how/whether the arthritis can affect tTG-IgA levels. I know that other autoimmune diseases can cause a mildly elevated tTG, though most of the things I've read talk about type 1 diabetes and thyroid disease rather than RA. But I did find a few articles, including the one below, that show an association between RA and tTG (but in adults, not children).


We are waiting to see a pediatric celiac specialist because my daughter's tTG still hasn't dropped all the way after a very strict gluten-free diet for almost two years. Meanwhile, I finally got her current doctor to take the possibility of other autoimmune disease seriously and order some tests. Her ESR came back high, though CRP is normal. I wouldn't be too surprised if celiac alone might cause that, and it isn't alarmingly high, but I think it's about 3x normal. Since she was a toddler she has had joint pains that were severe enough that she couldn't walk at times. We were told that it was toxic synovitis, and that some kids were just prone to it. But the joint pains almost totally went away after her celiac diagnosis, so it's clear to me that there's some association. The joint pains have returned intermittently in the past few months. Anyway, juvenile rheumatoid arthritis would fit.

I'm sure they will now do additional follow-up once the throid tests and other results come back too. But meanwhile, if anyone has experience with rheumatoid arthritis confounding tTG results, I'd be happy to hear it! (It would actually be good news because I'd stop driving myself crazy trying to find hidden gluten that we missed.)

Any Scientific Evidence Than Less Than 20Ppm Can Cause Ttg Rise?

21 March 2015 - 08:48 AM

[Oops, title was supposed to say "thaT less than 20ppm"...]

Does anyone know if there's reliable scientific evidence showing that some celiacs have a rise in tTG caused by gluten levels less than 20ppm? I'm wondering about actual antibody rises, not just symptoms.

As I posted in another thread, my daughter's tTG had gone way down since diagnosis and then rose again recently. Aside from Schar bread, which she was eating before with no problem, I make almost all our baked goods from scratch. Triple-checked everything. But I did just find reliable evidence that one of the gluten-free flours I've been using has tested at 7-9ppm. I'd estimate that she probably eats three or four muffins a week made from scratch that include that flour mixed with others. So she's maybe getting 1 cup or so of the 7-9ppm flour per week. Is it even conceivable that that could be enough to cause an actual rise in tTG?

For what it's worth, her celiac symptoms clearly started when she was a young infant who was exclusively breastfed, before she ever ate wheat directly herself. And she also had an extremely clear reaction to Rice Dream after going gluten free. So I do know she's very sensitive. I had been using this flour all along, and the tTg rise was only recent, but her tTG had never dropped completely into the negative range and I have been baking muffins more frequently lately.

Daughter's Ttg Suddenly Doubled

18 March 2015 - 04:43 AM

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.

Sharing Toothpaste Tube?

28 February 2015 - 07:57 AM

Is it necessary to avoid sharing a toothpaste tube with a gluten-eater? My daughter and I have kept a separate toothpaste tube since her diagnosis. My partner eats gluten outside of the house and uses a different tube. This is easy enough to do, but sometimes if we run out or go on vacation or something, it would be easier for us all to share one tube.

Obviously I won't do this if there's a real risk of cc - we've been very careful never to share toothpaste so far. But I'm wondering if I'm being too paranoid in worrying about this, or if it really is a necessary precaution.

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