Confused About Cross Contamination

[GFinBC]

Hi,

I have recently tested positive to celiac disease via a blood test. Where I live (in Canada) it can take up to 18 months for me to get a biopsy. Therefore, my GP has suggested to me that I should go gluten-free to heal and stop any further damage until I can get in for the biopsy. I have decided to take his advice. At this point in time the only sign I have of celiac disease is a nutrient absorption issue so I'm hoping when I go back on before the biopsy that I won't have too many issues.

I live with my husband and 2 young children (2 and 5 years old). For the time being we have decided that they will be partially gluten-free until they eat up all the gluten containing food in our house otherwise we would litterally be throwing hundreds of dollars of perfectly edible food out the door. We are on a tight budget as it is so that would really kill me.

I've been reading all over the internet that I should be avoiding gluten as completely as possible (ie. no dermal contact or inhalation). Obviously I will not be able to avoid gluten in this way while caring for my children while they are still eating gluten. I'm trying as hard as I can to wash their hands right after meals and snacks. Do you have any further ideas? Also, is it so extreme that I can't kiss my family members until they've washed their faces after they eat gluten? Can I still bake bread for them using wheat flour?

Thanks in advance,

Marianne

[Gemini]

Hi,

I have recently tested positive to celiac disease via a blood test. Where I live (in Canada) it can take up to 18 months for me to get a biopsy. Therefore, my GP has suggested to me that I should go gluten-free to heal and stop any further damage until I can get in for the biopsy. I have decided to take his advice. At this point in time the only sign I have of celiac disease is a nutrient absorption issue so I'm hoping when I go back on before the biopsy that I won't have too many issues.

I live with my husband and 2 young children (2 and 5 years old). For the time being we have decided that they will be partially gluten-free until they eat up all the gluten containing food in our house otherwise we would litterally be throwing hundreds of dollars of perfectly edible food out the door. We are on a tight budget as it is so that would really kill me.

I've been reading all over the internet that I should be avoiding gluten as completely as possible (ie. no dermal contact or inhalation). Obviously I will not be able to avoid gluten in this way while caring for my children while they are still eating gluten. I'm trying as hard as I can to wash their hands right after meals and snacks. Do you have any further ideas? Also, is it so extreme that I can't kiss my family members until they've washed their faces after they eat gluten? Can I still bake bread for them using wheat flour?

Thanks in advance,

Marianne

Hi Marianne,

Welcome to the Celiac world.......I know it probably feels overwhelming right now but you will get the hang of it and it won't seem so bad. You will have some work to do considering that you have young children who are too young to understand the cross contamination issue but if you use good common sense and safe practices, you will find that you can handle gluten without any issues.

I live in a mixed household, without children, so it is easier for me but it can easily be done for you also. It is perfectly OK to touch gluten as long as you don't go putting your hands in your mouth (why would you anyway?). Gluten has to get into your GI tract via your mouth or nose to cause a reaction, period. It cannot be absorbed through your skin, although many people have trouble with this concept. I touch non-gluten-free bread but make sure I wash my hands afterwards and have never had any problems. I was an end stage, extremely sick Celiac so if I don't get sick, I doubt you would. As far as kissing goes, it may be prudent to make sure the kids have washed after eating and brushed their teeth because kids will be kids and you may end up ingesting gluten from that. You do not have to be paranoid about it but because your children are so young, it would be a good practice to set up right from the beginning. Yeah, a pain, I know, but I think it wise for you to do so.

As for baking wheaty bread in your kitchen, I just wouldn't advise that at all. Flour gets everywhere, even if you wore a mask to protect yourself, you would have to hose the kitchen down afterwards and that is too much work. I would suggest buying regular bread for your family, instead of baking it yourself unless you bake gluten-free bread. You will also need your own toaster. Crumbs get everywhere and I guarantee you will have a problem if you use the same toaster.

You also do not need to use gluten-free skin care products, unless you are sensitive to some other ingredient in them and it irritates your skin. You will not have a gluten reaction by touching gluten, unless you swallow some. Many people do not agree with this but it's medical fact. It's important to learn the correct information about this disease or it will become more difficult for you. There is much incorrect information out there so you should talk to the medical community to back up what you may have read on the internet. If you feel uncomfortable using gluten containing products on your skin, then go gluten-free in that department also but it is not necessary. You will also be having regular follow-up blood work, or should have, to see if you are ingesting any gluten. I do not check skin care products for their gluten-free status and my blood work is excellent so I know I am not ingesting any. Common sense works !

Personally, it may be easier for the family to go gluten-free but the problem with that is your children may develop the disease also. If they are eating gluten-free, any testing would be incorrect as you have to be ingesting gluten to get correct information. It would also be more expensive for you and I don't think I would put anyone on a gluten-free diet unless there was strong evidence they needed to be. Hard choices to make but ones you need to think about. If you are finding out that you are being glutened by having a mixed household, you could have them go gluten-free for now but let them eat gluten elsewhere. They may never have a problem but it's genetic so the chance is very real.

I don't want to overload you with info so if you have any more questions, ask away! Stay calm and good luck!

[njbeachbum]

Excellent advice Gemini.... I couldn't agree with all of your points any more :-)

[GFinBC]

Thank you for taking the time to respond Gemini and njbeachbum. I do have more questions!

How do I clean things to make sure they are gluten-free? Can I use a cutting board that has been used for gluten foods if it's cleaned well? What about a bread machine? I have a number of good quality appliances and would prefer not to have to replace them all.

Finally, I work with young children and one of the things I do with them twice a week is bake bread. I do not make the dough but I usually participate in the kneading, shaping and baking of the bread. I have a co-worker who can do it all alone but I would prefer to help her if I can, mostly because my kids are part of the class and I don't know that my youngest would tolerate me being on the other side of the (large) room. It sounds like I'd need to stay away because of the flour used in the kneading though. What do you think?

Thanks again!!

Marianne

[Gemini]

Thank you for taking the time to respond Gemini and njbeachbum. I do have more questions!

How do I clean things to make sure they are gluten-free? Can I use a cutting board that has been used for gluten foods if it's cleaned well? What about a bread machine? I have a number of good quality appliances and would prefer not to have to replace them all.

Finally, I work with young children and one of the things I do with them twice a week is bake bread. I do not make the dough but I usually participate in the kneading, shaping and baking of the bread. I have a co-worker who can do it all alone but I would prefer to help her if I can, mostly because my kids are part of the class and I don't know that my youngest would tolerate me being on the other side of the (large) room. It sounds like I'd need to stay away because of the flour used in the kneading though. What do you think?

Thanks again!!

Marianne

Anything made of wood or with a porous surface should really be tossed out and new ones bought. I admit that I refused to replace my cookware because it's very expensive and I just will not replace an expense that big. I use the Le Creuset cookware, which is cast iron but it's coated with enamel. Plain cast iron is very porous but I have using mine now for 4 years post gluten-free and my blood work shows no problems. Any of the older Le Creuset where the enamel was wearing away I did replace. I scrubbed it to within an inch of it's life and that's what I have been using. I also use Corning Ware, which is glass, and I did not replace those. I have been a tiny bit skeptical about the need to replace everything. You can always go by your blood work and how you are feeling but anything made of wood

like cooking spoons or cutting boards I replaced....the obvious offenders. If you have stainless cookware, no need to do anything but clean it really well. You can always run things through a dishwasher to help with the cleaning and no, I have never given that a thought as far as the soap because it goes through a million rinse cycles!

The problem of the bread making is a tough one. It will not be in your home and you can wear a mask and apron when kneading the dough but it all depends on how much flour is thrown around when rolling it out. You are working with kids so I would imagine it would be hard for them to understand how careful they must be. As far as kneading a wet dough, that shouldn't be a problem with regards to touching it but the dry flour may be enough to make you feel bad. Maybe you could stand back a bit and still be a part of the group without getting into a cloud of flour? You are the only one who knows how much is used and how contaminated the surfaces get. I might try it myself, being ultra careful, but I would have a good mask over my nose and mouth and use an apron to keep it off your clothes. Hard call but you do have to be careful. I haven't been around wheat bread or wheat flour for 4 years, except for what my husband toasts in the morning, so it's a difficult decision. Are the kids old enough so you could do a brief tutorial with them on what Celiac Disease means and how not to contaminate you? I know, this is when having Celiac can be a pain in the butt!

Oh....the bread machine! Honestly, I think I would replace that for obvious reasons. If you have made a lot of gluteny bread in it, it would be almost impossible to clean it thoroughly enough. I know that's annoying to hear but to be safe, it's too much of a risk. Go buy yourself a new, clean gluten-free bread machine because you deserve it!

[marciab]

The NIH has a good article on celiac disease and in here they tell you to avoid ALL gluten ....

Open Original Shared Link

Here's a group of articles about how gluten affects the bodies of celiacs as well as non celiacs.

Open Original Shared Link

Fortunately, since we have access to this info on the web, we can benefit from this until everyone in the medical community gets up to speed on how gluten affects the bodies of celiacs as well as non celiacs.

I'm super sensitive to gluten and I'll have myoclonus or other nuero symptoms from minute amounts of gluten exposure. And while this is annoying, hopefully my reaction will keep me from getting gluten ataxia again and hopefully will keep me from getting other complications from gluten exposure.

HTH ... Marcia

[kbtoyssni]

I have recently tested positive to celiac disease via a blood test. Where I live (in Canada) it can take up to 18 months for me to get a biopsy. Therefore, my GP has suggested to me that I should go gluten-free to heal and stop any further damage until I can get in for the biopsy. I have decided to take his advice. At this point in time the only sign I have of celiac disease is a nutrient absorption issue so I'm hoping when I go back on before the biopsy that I won't have too many issues.

If you go gluten free now and heal, you're going to have to eat a lot of gluten before the biopsy to have a hope of it coming out positive. Some estimates I've seen have recommended eating 3-4 servings of gluten for six months before the biopsy, which is probably what you'll need if you're off gluten for a year. You symptoms may also get worse as you heal. You might want to think about if you want to go gluten-free for a year, then eat gluten for six months and what you'd do if you do start getting really sick when eating gluten. Also, what would you do the biopsy comes out negative? Just something to think about a little before proceeding.

[NorthernElf]

Hey, I'm also from BC...and it took me about 4 months to get my biopsy (a few years ago). I agree with the last post - by the time you get your biopsy it likely won't show anything anyway. No one told me I shouldn't stop eating gluten BEFORE the biopsy - so I did. By the time I had the biopsy, there was nothing to see. However, I most definitely have a reaction to gluten, yikes, no contest there ! In fact, my reaction to gluten is even more sensitive than ever before. Symptoms - intense sinus headaches, joint pain, fatigue, brain fog, stomach cramps, those wonderful foul stools, etc. And those start from just cross contamination !!! When things were new to me I did consider doing a gluten challenge - but 3 months of eating gluten just to have a piece of paper with a positive celiac diagnosis was so not worth it. To me, eating gluten is like poisoning myself - like making myself have a mix of a flu & a hangover...I couldn't imagine 3 months of that !!

So I guess that puts you in a bit of a bind. Your focus should be on your health - if gluten is an issue for you, cutting it out will improve your health & heal your intestinal tract, even if it will wreck testing. It will take time but if gluten is the issue, you'll know as your health improves and, unfortunately, your sensitivity probably gets worse. I so wish there was a simple ACCURATE blood test that would say once & for all yes or no to the celiac question...wouldn't that be valuable when you consider that 1 in 130 or so people have it ?

[Gemini]

If you go gluten free now and heal, you're going to have to eat a lot of gluten before the biopsy to have a hope of it coming out positive. Some estimates I've seen have recommended eating 3-4 servings of gluten for six months before the biopsy, which is probably what you'll need if you're off gluten for a year. You symptoms may also get worse as you heal. You might want to think about if you want to go gluten-free for a year, then eat gluten for six months and what you'd do if you do start getting really sick when eating gluten. Also, what would you do the biopsy comes out negative? Just something to think about a little before proceeding.

I think Marianne already has a diagnosis....she had positive blood work. That is a diagnosis, if the numbers are out of range. Even considering the wait times in Canada for biopsies, I think at that point it would be used to gauge how she is healing, if she chooses to have it done at all. It would be impossible to see damaged villi after 18 months gluten-free....unless healing was not complete and the doctor got lucky with the area biopsied.

I just hope the US does not adopt socialized medicine from an afford-ability perspective. Half of my relatives live in Canada and they tell me how long the waits can be at times. I thought it was hard to be diagnosed here in the States but it must be twice as hard in Canada!

[ang1e0251]

Welcome to the forum. You are going to get answers to any questions you ask here, problem is, we all have different opinions and you are going to have to sort through all responses for your personal answers. I didn't have access to much info when I started the GFD a year ago. So I did a lot of things wrong in hindsight. I have a cutting board my son made for me in school, so there was no way I was going to give that up. Actually, I didn't know any better. I didn't have a problem with that. Also did not give up my iron skillet, no problem. I did ditch the non stick skillet and replaced with new. That one is completely gluten-free.

My husband has his bread which I handle to toast for him and I also tear up and feed to my dogs daily. I clean up the crumbs on the counter , no problems. I'm not as sensitive as some.

That being said I haven't so much as walked in a pizza place for over a year. I'm afraid to. There is no way I would work with dough or knead it. I've read that flour particles can stay airborn for 2 hours. My husband has a bag of flour which I have banned to another room. He hasn't even opened it and neither of us can remember why he wanted it.

I hope you can make a decision about the bread class that works for you without you getting sick. Maybe there's another activity you could participate in. Good luck and let us know how it works for you.

[Gemini]

My husband has his bread which I handle to toast for him and I also tear up and feed to my dogs daily. I clean up the crumbs on the counter , no problems. I'm not as sensitive as some.

I am not sure it is a function of being sensitive. All Celiacs are sensitive and should exercise caution and good handling practices when exposed to gluten. Apparently, you have a system that works and you are not being glutened by feeding your dogs bread. You wouldn't be glutened, unless you ate it or didn't wash your hands after handling it. That's the point I am trying to make. If you rely on good information that has been backed up by the medical profession, aside from an accidental glutening which can happen to anyone, you should be OK. People should not fear handling gluten or being in the same room, unless you are not careful. I was as sick as a Celiac could be, down to 98 pounds soaking wet, and unable to leave the house. I was threatened with hospitalization and feeding tubes.

If I can handle gluten carefully, anyone else should be able to also....not that they have to if they feel uncomfortable. I just hate to see people get incorrect information at the beginning because that will impact them in a big way and make this diet much harder and make some resentful and depressed. It doesn't have to be difficult. For those who were diagnosed with blood work or biopsy, their follow-up blood work should show a problem if a person is being exposed.

[JNBunnie1]

My only advice would be to be very careful with any product you are going to use on skin that may contain gluten. A number of people have no problem with this. I do. You may find yourself reaching into your mouth to get that sticky bit of raisin off your back teeth before you even think about, after having put lotion on your hands. There's just no reason to go and have things or products in the house with gluten in them that may affect you- it's too easy to get things that don't. Why risk it?

[Salem]

I too live in BC, and I didn't wait long at all for my first biopsy, a couple of months. The first one was negative, so I continued on eating gluten for years, literally until I wanted to die. I got the blood work done again, seeing the results was all I needed. I went gluten-free before realizing that I needed to eat gluten for the biopsy. But by then it was too late, I had an immediate response to the gluten-free diet, and am too scared to ever eat gluten again. I KNOW I have celiac disease, I don't need another biopsy. If the biopsy came back negative, I would still stay with the gluten-free diet. Just something for you to consider...