Not Sure Where Gluten Is Coming From

[GFM]

My son's ttg was elevated at his last check-up. His doctor suspects he is getting gluten from somewhere. I keep a diary of everything he eats, and am desperately trying to figure out where the gluten is coming from. I'm convinced it's a cross-contamination issue. After looking at what he ate a lot of in the month prior to his test, I noticed he was on a Leapin Lemur kick. Has anyone had problems with this cereal? Or, better yet, does anyone eat Leapin Lemurs on a regular basis (as well as the other gluten free Envirokidz cereals) and test negative on follow-up ttg tests?

[JillianLindsay]

Hmm... I eat EnviroKidz cereal and cereal bars all the time! I have my first follow-up soon with my first post-diet ttg test. I'll let you know what my results are

Jillian

My son's ttg was elevated at his last check-up. His doctor suspects he is getting gluten from somewhere. I keep a diary of everything he eats, and am desperately trying to figure out where the gluten is coming from. I'm convinced it's a cross-contamination issue. After looking at what he ate a lot of in the month prior to his test, I noticed he was on a Leapin Lemur kick. Has anyone had problems with this cereal? Or, better yet, does anyone eat Leapin Lemurs on a regular basis (as well as the other gluten free Envirokidz cereals) and test negative on follow-up ttg tests?

[taweavmo3]

I've always been a little bit leary of Envirokidz, just b/c they do make other products with wheat. Once in a while might be okay, but every day that little bit might start to add up. That happens to us alot with other products that are cc....once in a blue moon is fine, a few times a week equals trouble!

[Jeremiah]

Leapin Lemur kick... I don't think this one claims to be gluten free, if memory serves me correctly.

[brigala]

Yes, Leapin Lemurs is supposed to be gluten-free.

I didn't like it very much, though. I like the Panda Puffs and the Koala Krisps, but the Leapin Lemurs was bleh. The cereal. Now the Leapin Lemurs BARS kick a$$.

I don't eat any of them very often, though.

[Lynayah]

Look at all the sources of possible gluten. For example, does the soap in the school washroom have gluten-free soap, and if not, might he wash his hands and later put his hands in his mouth?

[GFM]

Thanks for all the responses and suggestions. Our house went gluten free in April 2007 when my son (who is now 10) was diagnosed. He's had repeated bloodwork every 6 months or so, and sometimes even after only 3 months. He was finally negative for the first and only time in March 2009. We have a spreadsheet with all the foods that he eats and after some analysis of what he is eating a lot of in the month before each test and comparing each time frame, we suspected the Leapin Lemurs so that's what prompted the question. Ironically, just before he tested negative, he was on a Panda Puff kick. Also, no changes to the soap at school.

[Ahorsesoul]

You may want to go watch him at school a few days. Is he getting a little treat from a friend at lunch (of course he is not going to tell you)? Are they playing with Playdoh at school or at a friends house? What about his toothpaste?

It's hard to track it down as an adult. With kids it's even harder. Let us know what you find out.

[GFM]

I appreciate the comments, and I know I may come off as sounding like a mom in denial, but I do not believe that he's taking treats from friends and cheating on his diet. He wants his tests to come back negative as much as anyone. Although good ideas, he has no interest in Playdoh, and he was using the same toothpaste (same ingredients) as when he tested negative. So, we'll continue trying to figure this out.

[Gemini]

I appreciate the comments, and I know I may come off as sounding like a mom in denial, but I do not believe that he's taking treats from friends and cheating on his diet. He wants his tests to come back negative as much as anyone. Although good ideas, he has no interest in Playdoh, and he was using the same toothpaste (same ingredients) as when he tested negative. So, we'll continue trying to figure this out.

Just my 2 cents worth here......for the millionth time since I started posting to this forum, the tTg is a lousy test to use for dietary compliance and doctors are still making this huge mistake. I just don't understand what they don't get! A primer.......tTg can also elevate in the presence of other autoimmune diseases, consistent and common with Celiac Disease. So, if they did not also run the AGA IgA and AGA IgG tests, which actually tests for the presence of the gliadin antibody in his blood, the doctor has no way of knowing whether this is a dietary compliance issue or another disease is present. Hashi's thyroid disease is very, very common with Celiac and that will elevate tTg and keep it elevated, if not treated. So, the doc needs to do these other 2 tests or the tTg is useless.

I hate to see people who are very careful drive themselves nuts when it may not be coming from his diet at all.

Second, soap is not an issue for hand washing as you rinse your hands and remove the soap. Unless he is very young and does not rinse his hands well, and then puts his hands into his mouth on a regular basis, I wouldn't obsess about that. If it's something that is going to stay on the hands, like lotion, that's a different story.

You sound like you have done a great job at tracking his recovery so I would ask the doc for the other 2 tests, in conjunction with the tTg, for a total picture of what's going on. If he thinks the tTg is enough, then you have a problem because it isn't. The other two I mentioned are for dietary compliance, not the tTg. That tests for damage level or if other diseases may be present. I have 4 autoimmune diseases total so am well versed with all the testing aspects. It also took me awhile to find a doctor who was easy to train on these issues!

[dilettantesteph]

I think that my son and I have been glutened by envirokidz. It was a chocolate rice one, I think, that was labelled gluten free. I am very sensitive though.

[celiac-mommy]

Envirokidz is the only gluten-free cereal I buy for my kids (it's the cheapest one I can find ) and my dd is so sensitive, she reacts immediately and violently (won't go into details). Neither kid has ever had an issue with any of their stuff that is labeled gluten-free.

[GFM]

All great ideas! Thanks everyone for your responses. I appreciate the help.