Gluten Contamination

[inmygenes]

So it's been a year since I stopped eating gluten, my IgA test came up at 100 units when I was first diagnosed. My latest test shows came out at 29 units which shows that I'm still getting contamination. What could it be, and does this amount mean that I'm getting a lot of contamination?

My husband bakes with wheat flour and we have a small kitchen, but we have separate baking equipment and try and use different areas. He's going to bake outside from now on and we'll try and change things. Also because of not being able to buy gluten-free baking supplies from all the health stores when I need to, my only option has been to buy the store own brand which says on the pack that the facility has good practices to segregate gluten flour from gluten free flour etc. Should I avoid these products? - it's difficult as if I do I'll have to order gluten-free products from the city and it's not that easy to get. Could my tooth pastes be a problem? - I use Crest and Sensodyne. Also my lipstick is Clarins but when I emailed them they didn't include lipstick in the products that contain gluten.

Any help or info would be appreciated, thanks.

- Thanks for all the comments, really helpful. This explains why my stomach has been so unsettled on and off, we couldn't work out why.

[Ahorsesoul]

I would love for your dh to start baking gluten free and give us tips and recipes!!!

[Roda]

If he uses regular flour, he needs to mix it outside of the kitchen. I don't allow any baking with "flour" in mine. If the rest of the gang wants something that I can't make gluten free or if there is a version gluten free they don't like, they either buy it, or use box mixes that the flour does not fly around the air. I thought I heard sensodyne was not gluten free, but you'll need to check on that since I'm not certain. As for the flours I would try to get different. We have two bulk stores around me that sells gluten free flours but I'm uncertain of their repackaging practices so I will no buy it. The one place rebags regular flour in the same room/same equipment as the gluten free flours. It sucks, because the prices are so much cheeper.

[StephanieGF]

Well, I believe I read on this board that Sensodyne is the only toothpaste that does have gluten (wheat) it in, so yes, I would say that maybe the main problem.

That said, I personally would be very very uncomfortable with my DH or anyone else baking bread in my kitchen. Flour is so dusty and can go anywhere so easily. You can touch the cabinet door, then your dishes and possibly CC yourself. We have a 99% gluten free kitchen, my DH will drink beer and the occasional Chinese take out in it's container, but that is it. Otherwise, I end up glutening myself, I am just that sensitive.

It is just a constant learning process, I have been gluten-free for a year now too, but at first I was still getting trace amounts because our kitchen still had too many ways to CC myself. When my son needed to go gluten-free this fall, we decided to just make the house that way too. But everyone needs to figure out what is best for them.

[AKcollegestudent]

I get amazingly sick from flour left in the air. Most of my most intense glutenings have been because someone was making something with flour and I breathed it in. Mind you, I also try to hurl just by breathing in the smell of the bread aisle. (Seriously? The peanut butter I buy is at the end of the same aisle. I've been known to get someone else to pick it up off of the shelf because the smell alone makes me sick.)

[Mey Marie]

I am unable to go 100% gluten-free in my kitchen and I thought I was being safe. What thinks should I be doing to keep myself safe? Some ideas?

[inmygenes]

Mey Marie - I have the same problem and it's really hard. Separate cupboards and equipment is best, IE have your own wooden spoons/spatulas, sieve, mixer, toaster, cutting boards, cloths and counter top areas. I've learned the hard way that it's not okay to have regular baking going on in the same area as flour gets in the air and it causes contamination. Have your own spreads, jams, butter dish etc too. Also I've realized that a lot of contamination happens just from doing the dishes, wheaty things need washing last. Everything needs washing regularly like the cupboard door handles, fridge door, oven etc, anything that gets touched with gluten hands!

[inmygenes]

Yes it looks like Sensodyne does have potential contamination but it doesn't contain gluten, this was a reply from them from a few years ago: "Thank you for contacting us regarding Sensodyne

[AKcollegestudent]

Yes it looks like Sensodyne does have potential contamination but it doesn't contain gluten, this was a reply from them from a few years ago: "Thank you for contacting us regarding Sensodyne® toothpaste. Although we do not add gluten to any of our Sensodyne® products, our raw materials suppliers could not guarantee that they are gluten-free. Therefore, Sensodyne® may contain trace amounts of gluten. If you are looking for a sensitive toothpaste that is gluten-free, you may want to try Aquafresh® Sensitive® Maximum Strength toothpaste, which is completely gluten-free. We appreciate your taking the time to contact us." 6/26/07

The proenamel sensodyne--which I use on a semi-regular basis--is gluten-free, and the company said so, as of a late 2009 post on the board.

And as several mods are fond of noting, 1) that's a 3 year old quote; things may have changed in the intervening years and 2) it's a fairly standard CYA letter. Most of the time, the product is gluten-free and the CYA exists just in case. I've had multiple discussions with companies where they used the CYA and it was obvious; I've had a few others where they will actually say, "It sounds like CYA, but you should be concerned. Refund?" Unless they start sounding vaguely worried, I'm usually not.

As I called Sensodyne after the last round of "sensitivity sucks", I can honestly say that at least the ProNamel (or whatever it's called; it's 12:15 and I feel like sea scum) is gluten-free.

[Mey Marie]

Mey Marie - I have the same problem and it's really hard. Separate cupboards and equipment is best, IE have your own wooden spoons/spatulas, sieve, mixer, toaster, cutting boards, cloths and counter top areas. I've learned the hard way that it's not okay to have regular baking going on in the same area as flour gets in the air and it causes contamination. Have your own spreads, jams, butter dish etc too. Also I've realized that a lot of contamination happens just from doing the dishes, wheaty things need washing last. Everything needs washing regularly like the cupboard door handles, fridge door, oven etc, anything that gets touched with gluten hands!

Thank you!

[bittykitty]

Thank you!

Also,pay close attention to the companies you buy from..I refuse to purchase anything I KNOW is from Quaker or General Mills.Was eating Mother's rice cakes,which clearly say gluten free on the label.Started slowly getting sicker and sicker..took a long time to realize they were a Quaker product,and that what was happening was CC.Think my blood test came back positive because of them(i had been gluten free for a year).

[masterjen]

Well, I believe I read on this board that Sensodyne is the only toothpaste that does have gluten (wheat) it in, so yes, I would say that maybe the main problem.

I thought I'd read somewhere that Sensodyne Pronamel did not contain gluten (but i now can't find where I read this) but that that the others do. Is this incorrect, from what you have learned?

[inmygenes]

bittykitty - That's really bad, did you complain to Quaker/General Mills? I just heard about one guy who had a bakery and was selling gluten free baked goods and he just got sued as his products tested positive for gluten.

[inmygenes]

The proenamel sensodyne--which I use on a semi-regular basis--is gluten-free, and the company said so, as of a late 2009 post on the board.

And as several mods are fond of noting, 1) that's a 3 year old quote; things may have changed in the intervening years and 2) it's a fairly standard CYA letter. Most of the time, the product is gluten-free and the CYA exists just in case. I've had multiple discussions with companies where they used the CYA and it was obvious; I've had a few others where they will actually say, "It sounds like CYA, but you should be concerned. Refund?" Unless they start sounding vaguely worried, I'm usually not.

As I called Sensodyne after the last round of "sensitivity sucks", I can honestly say that at least the ProNamel (or whatever it's called; it's 12:15 and I feel like sea scum) is gluten-free.

Thanks, that's good to know. I called them early on in 2009 and they told me the same info that is in the Quote I pasted. But it's great to hear that ProNamel is now gluten free!

[bittykitty]

bittykitty - That's really bad, did you complain to Quaker/General Mills? I just heard about one guy who had a bakery and was selling gluten free baked goods and he just got sued as his products tested positive for gluten.

I complain the best way I can..I don't buy their products,(yeah it's a giant umbrella company and you can't avoid all of them,but I'll give it a good shot) and I warn other people about them.Only real power a consumer has is in their purchase choices.You can ignore letters,but you can't ignore people not giving you their money.Three more dollars to the local farmers and three less to General Mills/Quaker/Betty Crocker and whoever else falls under that company name adds up over time.

[Darissa]

My reply from Sensodyne Co in 2010

Dear Ms. Perry,

Thank you for contacting us regarding Sensodyne

[inmygenes]

My reply from Sensodyne Co in 2010

Dear Ms. Perry,

Thank you for contacting us regarding Sensodyne

[masterjen]

Thanks, Darissa!

[StephanieGF]

Thanks Darissa for sharing this.

Just curious, which type of Sensodyne were/are you using?

[inmygenes]

Just curious, which type of Sensodyne were/are you using?

Sensodyne ProNamel

[Korwyn]

The best way seems to be to just not have any gluten baking going on in the kitchen. He's going to set himself up outside. I really want him to be able to keep on baking his bread as it's so much cheaper and better for him, so hopefully if it's all outside it will solve the contamination issues. I've suggested washing his hands out there too along with the really gluten covered baking things. It's tricky as we're in a rented place right now with a small kitchen so don't have much space. It will be a lot easier when we have out own place.

You're lucky to have a 99% gluten free kitchen, that's great!

Why not have him bake gluten-free bread? That's what we do. Also, I agree with a number of the previous posters. I do NOT (cannot) allow gluten products into our house. Even when our kids come over. At Christmas one of the boys said, "You can't expect us to just eat this," when I told him I didn't want him going back to their house to get chips and stuff. He was referring to the veggie tray - we hadn't set out any of the other finger foods yet. My response was, "Yes, actually I can. It's our house and I'm not going to be sick for a week or more just so you can snack."

The one time I relented in the last year (just a couple months ago) I paid for it. Our daughters was visiting for a week with her kids, and the formula she used has wheat as one of the main ingredients. I was very concerned, but she was mixing it in a separate area, etc. One of the nights we had a slow-cooked pork roast, and about 1 hour after eating it I was in the bathroom. The next couple days were not pleasant for me. Turned out that they prepped the roast on the same counter. They wiped the counter down very, very well, but apparently not well enough.

Also you said, 'the really gluten covered baking things'. It sounds like you are missing the cross-contamination, and gluten residue issue. Gluten can hide in the scratches in a plastic bowl even after going through the dishwasher. Or get stuck in the crevices of a whip or whisk.

An analogy I use is this: A standard small paper clip is approximately 1 gram. Many people with celiac disease or severe GI are sensitive to amounts as low as 10 mg. That is 1/100th of a gram. So straighten out a small paper clip and imagine it being cut into 1000 pieces (1000 milligrams = 1 gram). Then imagine how small each piece would be (literally microscopic), and all the places it could stick. Remember gluten is a sticky, stretchy, elastic substance.

I don't see any way to safely have a mixed gluten/gluten-free kitchen if the person is baking. IF you were only eating pre-processed foods (canned, packaged, etc) possibly, but not in a baking household.

[Ruthie13]

Also you said, 'the really gluten covered baking things'. It sounds like you are missing the cross-contamination, and gluten residue issue. Gluten can hide in the scratches in a plastic bowl even after going through the dishwasher. Or get stuck in the crevices of a whip or whisk.

An analogy I use is this: A standard small paper clip is approximately 1 gram. Many people with celiac disease or severe GI are sensitive to amounts as low as 10 mg. That is 1/100th of a gram. So straighten out a small paper clip and imagine it being cut into 1000 pieces (1000 milligrams = 1 gram). Then imagine how small each piece would be (literally microscopic), and all the places it could stick. Remember gluten is a sticky, stretchy, elastic substance.

I don't see any way to safely have a mixed gluten/gluten-free kitchen if the person is baking. IF you were only eating pre-processed foods (canned, packaged, etc) possibly, but not in a baking household.

Just wanted to say thanks Korwyn for your post, it really brought it home to me just how careful I need to be. I'm currently living with 7 gluten lovers and we share 1 small kitchen. I've been progressively getting more and more unwell showing more signs of being glutenized regularly and your post really made me understand just how easy (and likely) it is to happen when others are using the kitchen for baking. I

[Korwyn]

Just wanted to say thanks Korwyn for your post, it really brought it home to me just how careful I need to be. I'm currently living with 7 gluten lovers and we share 1 small kitchen. I've been progressively getting more and more unwell showing more signs of being glutenized regularly and your post really made me understand just how easy (and likely) it is to happen when others are using the kitchen for baking. I

[Ruthie13]

You're welcome. I've had a couple people at work get kind of offended at me because they 'know someone', or 'have cooked for someone' who is gluten-free, and 'they were fine with my cooking'. A lot of people can't grasp the auto-immune side of celiac disease and that there is no safe level. I wish you the best of luck. I hope that you are able to work it out so that you can continue your work there. I have a lot of respect for those who are willing and able to make that sacrifice. What kind of work are you doing?

The more research I read and do, the more convinced I'm becoming that strong gluten-intolerance, that is GI which exhibits multiple of the 200+ symptoms characteristic of celiac disease as opposed to merely an upset stomach, is simply celiac disease which has not (and may never) reached the traditional small intestine biopsy level. There is a research both in Europe and finally more here in the US which is beginning to question if the standard diagnosis of small intestinal vilious atrophy is the only auto-immune presentation. European researchers and some here in the US are finding that CNS and Neurological symptoms may actually be more prevalent than the GI ones and may be a more definitive symptomatic diagnosis for gluten-intolerance.

Thanks again, I haven't as yet come across anyone offended by my gluten-free eating, generally just confused (especially here where celiac doesn't seem to exist), disbelieving, or intrigued. Sometimes I feel like it

[i-geek]

The more research I read and do, the more convinced I'm becoming that strong gluten-intolerance, that is GI which exhibits multiple of the 200+ symptoms characteristic of celiac disease as opposed to merely an upset stomach, is simply celiac disease which has not (and may never) reached the traditional small intestine biopsy level. There is a research both in Europe and finally more here in the US which is beginning to question if the standard diagnosis of small intestinal vilious atrophy is the only auto-immune presentation. European researchers and some here in the US are finding that CNS and Neurological symptoms may actually be more prevalent than the GI ones and may be a more definitive symptomatic diagnosis for gluten-intolerance.

Yep. I think you're onto something there. My blood tests came back negative (although I'd been on a very low-gluten diet for weeks), so no biopsy was ordered. According to the medical community, I do not have celiac disease. Four months into the gluten-free diet, my gut has healed to the point that I can eat many of the foods that were previously on my "causes major GI distress" list with no problems. I don't have daily headaches anymore- in fact, the only times I get headaches are for the 2-3 days following a gluten intake (always accidental- I don't cheat). The depression and brain fog that were my constant companions have lifted. I still have GI problems, but I'm finding that those are becoming less severe and the headaches- migraines, actually- get worse each time I'm CC'd. I'm also noticing that I get the shakes following a glutening and that those seem to precede the headaches. So yeah, CNS/neuro symptoms are definitely there and respond strongly to gluten.