The Power Of Cross Contamination

[elle's mom]

Our home has been completely gluten free (or so we thought) for almost a year now. We got new pots, pans, cutting boards, knives, toaster; everything. We do not eat out, haven't in almost a year. We did this all in hopes of getting our diagnosed celiac daughter's antibody levels down into the "normal" range after almost two years of her only (not the rest of the family) being gluten free and her levels still being high.

Anyway, my youngest at 13 months began getting very cranky, irritable, abnormal refusals yet starving etc. We took her to the doctor not knowing what it could be. I told the doctor, "if I didn't know any better I'd think she was reacting to gluten (because it seemed like the same behavior as when my other daughter was younger), but she hasn't had any gluten in her life".

Well, he ran the celiac panel anyway, which I thought was useless since she had really only been eating plain babyfood, fruits, veggies, and meats-no gluten, dairy, very limited soy, she refused egg, processed gluten free foods only a handful of times and recently no rice or corn just to see if that helped. We found out today that her levels are elevated!!! Mildly elevated, but still with NEVER consuming anything that knowingly contained gluten in her life, can you believe it?! She's never even ate at a restaurant or had food prepared at anyone else's home, she does not go to daycare, she is completely sheltered! We are so careful, I have switched soaps, shampoos, my hairspray, I don't know what more I can realistically do.

BTW, haven't heard the results on my older daughter, but if they are still high too I think I will just about go insane.

My husband took the phonecall, so I didn't get to ask any questions but he thinks it was the TTG that was elevated, not the AGA.

How can this be, is there anything else that could cause this?

[Jestgar]

wow.

Has she been out of your house at all? Played on something that was contaminated? Was hugged by a contaminated passing child?

Are you gluten-free? Are you nursing? Maybe you were CC'd and didn't feel it?

[elle's mom]

wow.

Has she been out of your house at all? Played on something that was contaminated? Was hugged by a contaminated passing child?

Are you gluten-free? Are you nursing? Maybe you were CC'd and didn't feel it?

I was nursing her, but we've been done for a few weeks now. Yes, I am gluten free for almost an entire year now (minus a few slip ups here and there but none recently) and no she hasn't been anywhere. Other than church and yes there are kids touching the pew sometimes with cheerio hands. UGH!

[GlutenFreeManna]

I was nursing her, but we've been done for a few weeks now. Yes, I am gluten free for almost an entire year now (minus a few slip ups here and there but none recently) and no she hasn't been anywhere. Other than church and yes there are kids touching the pew sometimes with cheerio hands. UGH!

Is she in the nursery at church or does she stay with you the whole time? I used to work in a church nursery and all the snacks were gluten-traps-- cheerios, goldfish, animal crackers, etc, in fact I can't think of a thing we had that was gluten free. Another thought--are you using the same highchair, carrier, cribs, etc you used with your older children before going gluten free? Has your car interior been professionally cleaned? What about your carpets and floors at home? I'm not asking if you are messy, but I know several homeschooling moms of multiple children and there's no way they can keep up with the housework 100% all the time--cheerios, toys and other things roll under couches and behind furniture and are not discovered for months, maybe years (until a move happens). Is there any possibility she is picking up crumbs here and there just by crawling around at your house or friends houses? Also I'm assuming you check all her baby food for gluten but I'll toss it out there just in case. Even a jar of pureed carrots could have added gluten hiding in it. Hope you can find the culprit soon. Good Luck!

[elle's mom]

Is she in the nursery at church or does she stay with you the whole time? I used to work in a church nursery and all the snacks were gluten-traps-- cheerios, goldfish, animal crackers, etc, in fact I can't think of a thing we had that was gluten free. Another thought--are you using the same highchair, carrier, cribs, etc you used with your older children before going gluten free? Has your car interior been professionally cleaned? What about your carpets and floors at home? I'm not asking if you are messy, but I know several homeschooling moms of multiple children and there's no way they can keep up with the housework 100% all the time--cheerios, toys and other things roll under couches and behind furniture and are not discovered for months, maybe years (until a move happens). Is there any possibility she is picking up crumbs here and there just by crawling around at your house or friends houses? Also I'm assuming you check all her baby food for gluten but I'll toss it out there just in case. Even a jar of pureed carrots could have added gluten hiding in it. Hope you can find the culprit soon. Good Luck!

She does not leave my sight at church, but she does "bite" on the pew at times. I guess she has sat in the cart at Walmart a few times lately, but REALLY!? Now I'm thinking of all these things, and my family thought I was paranoid before........I guess I need to get one of those cover thingys for the grocery cart. I've read all the labels on the babyfood, and they're only fruits/veggies and water. It's Gerber and I thought they were gluten free but I know they do have gluten products, we've just never bought them, but maybe cc'd if processed in the same facility, there is no disclaimer about being processed on same equipment, how sad if that's it.

No, she hasn't been crawling around at anyone else's house either. And yes, I am using the same everything, and there is a possibility it could be from that. Of course we cleaned them, but those high chairs do have lots of cracks in them.

Oh yeah, I am a picky clean person (especially since being gluten free), there are no hidden cheerios in my house BTW, how did you know I homeschooled!?

[GlutenFreeManna]

She does not leave my sight at church, but she does "bite" on the pew at times. I guess she has sat in the cart at Walmart a few times lately, but REALLY!? Now I'm thinking of all these things, and my family thought I was paranoid before........I guess I need to get one of those cover thingys for the grocery cart. I've read all the labels on the babyfood, and they're only fruits/veggies and water. It's Gerber and I thought they were gluten free but I know they do have gluten products, we've just never bought them, but maybe cc'd if processed in the same facility, there is no disclaimer about being processed on same equipment, how sad if that's it.

No, she hasn't been crawling around at anyone else's house either. And yes, I am using the same everything, and there is a possibility it could be from that. Of course we cleaned them, but those high chairs do have lots of cracks in them.

Oh yeah, I am a picky clean person (especially since being gluten free), there are no hidden cheerios in my house BTW, how did you know I homeschooled!?

Oops, I thought you said you homeschooled in your first post I think the same baby equipment *might* be a culprit since many of those things have fabric, it makes sense that it would be hard to get all the little crumbs and wheat dust out of it. I mean, think about your car seat for example. If your previous kids were given a snack in the car (or even prior to getting in the car to go somewhere) and then they touched or drooled all over the fabric head rest and belts that hold them in the belts and fabric are now contaminated with gluten. Even if you wipe it with a Clorox wipe or something to kill the germs there could still be crevices that have gluten that your baby is touching and then putting her hands in her mouth. I don't think you need to freak out too much, but these are just possibilities for why she still has it in her system.

[Skylark]

Some celiacs react to casein as if it were gluten. Are you sure keeping milk in her diet is OK?

[dilettantesteph]

I believe you. My son and I are both very sensitive to low levels of gluten. Just now we are doing elimination/challenges for him as he has been suffering from DH for some time. When it got to the throwing up every day too, he eliminated anything the slightest bit questionable. He is on a few safe fruits and veggies and eggs and it went away. We added the one "safe" cheese that we had found and it came back. Not safe after all. Do you think that the baby foods could be contaminated? You could make homemade baby food. I did that and we didn't even know about celiac at that time. It isn't hard. Also watch out for grains as they can be contaminated during harvesting. I buy whole grains and sort and wash them. I have found gluten grains in gluten free grains. Currently my son isn't eating any so I'm not even sure that they are safe with the sorting and washing. Good luck getting your children healthy. It is hard when you know that you are feeding you child something that is making him sick.

[frogrun]

Do you ever take communion at church? I know this has been a problem for some people. They touch the communion wafer, then touch their child's hands, then the hands of the child go into the mouth of the child. I have been gluten free (other than the occasional contamination) for about a year and at this time my 22 month old is not and there have been a few times (back when we used to give her cheerios) that she glutened me by touching my mouth. We are still allowing her to eat gluten (not as much as the average child) even thought we know it is causing problems because the doctor won't do the blood test until she is two. The pediatrician said the results are often elevated before the age of two and can give a false positive. I'm not a big fan of the waiting game especially when it comes to the health of my child; however, I want a diag. for her so she can have some protection once she gets to school.

Personally I know how bad cross contamination can affect the body. The slightest touch of the plate by someone who hasn't washed their hands can lead me on a 4 day back slid.

At any rate, good luck with the search for the contamination.

[Korwyn]

Do you have pets or animals and do they eat dry food? If so, check and see if she is coming in contact with it. Most non-holistic pet foods and pet snacks have gluten and/or soy in them. I'm having an issue with this myself right now is how I know.

[elle's mom]

Thanks for all the replies everyone, another "you are not going to believe this"........when we called to have the labs faxed to us, we found out the doctor actually got the lab results mixed up with my other daughter! My 5yo daughter started out with a ttg of over 1000 and after three months being gluten-free, it had gone down to 300 something. Then after a year and a half when it was still 44 we took our whole home gluten free and quit eating out. Now it is 21 (20 is considered normal).

Thank goodness my youngest (who I was freaking out about in the beginning of this thread) did not have an elevated ttg, which I wouldn't expect since she has never consumed gluten. I'm actually quite happy with the 21 in my older daughter, less would've been even better but we're headed in the right direction and I have been told that can take time to go down, having started so high.

I guess I was freaking out unnecessarily....although it did open my eyes to some cc possibilities........

[elle's mom]

Some celiacs react to casein as if it were gluten. Are you sure keeping milk in her diet is OK?

She did test positive for dairy sensitivity so she will not be getting any dairy either, she had only had a very minimal amount before anyway, maybe a handful of times at most.