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Member Since 10 May 2013
Offline Last Active Yesterday, 10:12 PM

Topics I've Started

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.

Ttg Still Positive And Stopped Falling, But Negative Dgp?

17 October 2014 - 12:19 PM

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.

Still Abnormal Fat Malabsorption After 13 Months

22 July 2014 - 05:12 PM

A qualitative fecal fat test just confirmed that I still have significant malabsorption. I've been strictly gluten free for 13 months. I feel like I'm digesting things much better than at any other time in the last ten years, and after a few months gluten free my stools started sinking most of the time. But the continued sticky stools do worry me because this test was positive when I'd only been eating about 15-20g of fat per day. My heart races for several hours after meals with even just a tablespoon or two of olive oil, a few bites of avocado, or a couple slices of cheese. Apparently some doctors recommend eating around 100g of fat per day before this test, so the fact that one random stool sample showed malabsorption even when I was eating way less is worrisome. If I eat nothing but raw or steamed veggies and plain rice, I'm totally fine (but crave protein and oils).

I am having an abdominal MRI next week, and I left a message requesting the fecal elastase and vitamin K tests but I don't know if my GI will agree to order them. I strongly suspect that I have exocrine pancreatic insufficiency, and in that case it would hopefully resolve with more years gluten free and some time on prescription-strength enzymes. I know that pancreatic problems are common from long-undiagnosed celiac, and I still do suspect that my celiac tests were false negatives because I'd been gluten-light for so long. If I knew I had celiac, I certainly wouldn't expect 20+ years of problems to be gone after a single year gluten-free. But my doctors are adamant that neither NCGS (even if severe) nor wheat allergy would still have any residual effects after this long, and they do not think whatever is causing my malabsorption now has anything to do with gluten. That strikes me as unlikely, given that virtually every other health problem I've ever had is well on its way to healing now that I'm gluten free, but I also don't want to ignore other problems that could be unrelated.

I guess my questions are:
1) Has anyone with long-standing malabsorption at the time of a celiac diagnosis still had this much fat malabsorption a year later? How long does it take to resolve?
2) Has anyone with severe NCGS but not celiac had damage to their pancreas? Are my doctors right that NCGS can cause many of the same symptoms as celiac but does not actually cause clinically-significant malabsorption or damage? I can't seem to find any relevant literature on this.