Cross Contamination: Reason To Worry This Much?

[Kimbalou]

I was diagnosed with Celiac last Friday. I started the diet then. I keep reading here about CC. I am wondering if I really should be as worried about it as people here are? I need to see if I do ok with cutting out all gluten first, then I will see if I am so sensitive to flour floating in the air at Thanksgiving. by the time I get to our dinner, everything will be cooked already so I'm not going to panic over possible CC. Are there people here who are not sensitive to CC? Or does everyone make sure they are never near wheat/gluten of any kind even if you aren't eating it?

I just don't get it. I';m sure people are more sensitive than others are, right? There's got to be different levels of intolerance, right?

I don't want to think I have to walk around in my own little plastic bubble or something!

[starrytrekchic]

Yes, there are different levels of intolerance. Your first goal is to learn what all gluten hides in (and all the names it can go under) and get used to reading labels and making the main adjustments to gluten free life. You'll also need to start checking things like vitamins, herbal supplements, and medicines--anything that goes through your stomach.

After that--you'll need to gradually work through the other steps, depending on if you remain sick. Things like foods that might be cross-contaminated in factory, cross-contamination issues at home, gluten-containing toiletries and other stuff, that sort of thing. You may not have to worry much about these.

No need to try to take it on all at once, especially with the holidays here. One step at a time!

[kareng]

I got new pots because my old ones were 20+ years old. These new pots will never have the slime of wheat pasta stuck in the cracks. You do need your own toaster, colander, cutting board especially if your old one is wooden. Wooden spoons that stirred wheat flour cookies you wouldn't want to use for gluten-free cooking. Just think about the things with cracks or crevices that flour could stick in. Wheat flour is very sticky, so its hard to get out of the holes in a colander.

You won't want to use pb or butter tubs that someone would double dip a knife into. The knife will definitely leave crumbs.

That said, I hope we all don't have to be too extreme. I have heard of people who make guests change clothes before coming into the house because they might have a crumb.

I live in a mixed household. I use red colored tape on my pb, etc so no one else uses it. I also got red cooking utensils so we know not to stir pasta with them.

[Rowena]

As for dishes, I have only been married a year and a half and so we haven't even used all my dishes. So I did not get any new dishes yet. But like other's have said, you should replace anything that gluten can get stuck in. (It is nearly impossible to remove from such surfaces.) I myself requested a new toaster and new wooden spoons/spatulas for Christmas. I bought a few new wooden spoons to get me by until then, (And hopefully my parents will actually get them for me. The one time I asked for something, they didn't get it for me. And it was something I desperately needed.)

As for sensitivity, yes there are varying levels of sensitivity. Like for example some might find they have sensitivity to gluten products they put on their skin or hair or whatever. Topical Products. Others may not. I think you are right to take it slowly. The hardest thing to do is dive in all at once. And personally I think it makes it easier to miss the things you can't have if you dive in all at once. Obviously, you'll have to eliminate gluten foods entirely all at once but still.

[Kimbalou]

Ok, wooden spoons I can understand replacing. I don't use wooden spoons or cutting boards, so I think I'm ok as far as that goes. I have 2 collanders, I guess I could replace one, but I think the dishwasher will get anything off, then I can keep one for myself.

Yeah, it's getting overwhelming.

[Rowena]

Yeah, it's getting overwhelming.

No worries, that's why we're here, we can help you get things sorted out. It's a lot to take in at first...

[FooGirlsMom]

Hi,

I'm new to the idea of cross-contamination too and I'm sure I will have to make adjustments as I go at some point. For now, to keep it simple, when I opened a new peanut butter jar, I asked my family to use a spoon to scoop out what they want to use, then put it on their bread. Same with jelly and any other food you take out of a container & put back. In our refrigerator, I made Gluten Free shelves in the door, so my husband knows what he can feed our daugther (she's on the diet with me). He knows he can be as careless as he likes with his gluteny stuff but when he touches anything on the gluten-free shelf to be more careful. I de-glutened our pantry also. His bread is in a breadbasket with his bread products. Ours are somewhere else. Not much chance of flour floating around because I do all the baking. I do have my own toaster. I think simple precautions like this are good enough for now.

I'm curious as to why people feel the need to use different cutting boards. I assume that would be if you cut bread? I only use mine for meat & veggies so no chance of CC'ing.

I did gluten myself the other day by accident. UGH. I used my old digestive enzymes that had wheat in them. I did get bloated and I felt really emotional (I am not an emotional person) for a day and a half. I don't recommend being lax about labels. I always wondered what would happen to me if I ate gluten after going gluten-free for a month. I found out.

Good luck

FooGirlsMom

[shelly184]

I was diagnosed with Celiac last Friday. I started the diet then. I keep reading here about CC. I am wondering if I really should be as worried about it as people here are? I need to see if I do ok with cutting out all gluten first, then I will see if I am so sensitive to flour floating in the air at Thanksgiving. by the time I get to our dinner, everything will be cooked already so I'm not going to panic over possible CC. Are there people here who are not sensitive to CC? Or does everyone make sure they are never near wheat/gluten of any kind even if you aren't eating it?

I just don't get it. I';m sure people are more sensitive than others are, right? There's got to be different levels of intolerance, right?

I don't want to think I have to walk around in my own little plastic bubble or something!

Hi,

I was diagnosed Oct.21 this year. Really hard around the holidays. I know some people are more sensitive to small amounts of gluten. I bought myself a couple of seperate non-stick pans that dont do grilled cheese sandwiches or any gluten products. I'm doing steaks and baked potatos for Thanksgiving. I know if I eat turkey that had stuffing in it, I will be sick from it. I don't run away from flour though, I just make sure I wash my hands after handling bread. I haven't gone out to a restaurant yet but there are alot of them out there with gluten free menus. I find it quite a big change since I used to be able to go out at lunch and grab something anywhere, now I bring my food with me. Now the office parties with food are starting and I can't eat anything. Yes CC is dangerous because this disease could be a killer. I can't even use my toaster because it is contaminated and I bought myself a new cutting board. Hang in there, not eating gluten is better than the alternative. Happy Thanksgiving.

[jenngolightly]

I was diagnosed with Celiac last Friday. I started the diet then. I keep reading here about CC. I am wondering if I really should be as worried about it as people here are? I need to see if I do ok with cutting out all gluten first, then I will see if I am so sensitive to flour floating in the air at Thanksgiving. by the time I get to our dinner, everything will be cooked already so I'm not going to panic over possible CC. Are there people here who are not sensitive to CC? Or does everyone make sure they are never near wheat/gluten of any kind even if you aren't eating it?

I just don't get it. I';m sure people are more sensitive than others are, right? There's got to be different levels of intolerance, right?

I don't want to think I have to walk around in my own little plastic bubble or something!

Not scolding, but here's the reality...

No, there are not different levels of intolerances for people with Celiac Disease. If you have Celiac, you have an autoimmune disease. You may or may not have observable reactions to food, but your body is damaged from gluten. No matter how much gluten you ingest, your body is falling apart inside. Risk of cancer is high for Celiacs because your body attacks itself whenever it comes into contact with gluten. Have you heard the stats that 1/133 people have Celiac, but only 3% are diagnosed? Do you know why? Because they don't have outward symptoms that obviously point to Celiac. It takes years and years to come to the diagnosis, and many don't believe they have it even after diagnosis because they don't have diarrhea and bloating and pain after they eat gluten.

There's a simple way to illustrate how much gluten you can ingest before your body will turn on itself and start attacking your organs (autoimmune diseases do that). Take a slice of bread and cut it into 5000 pieces. Now eat one piece. That's how much will make your body sick.

What I recommend is reading up on not only Celiac, but on what an autoimmune disease does to your body. The most lethal is Cancer. Others for Celiacs are osteoporosis, infertility, leaky gut syndrome, ms, eczema, and the list goes on and on. There's more to your health than gas and diarrhea here. Your life is changed with this diagnosis. There is no cheating with Celiac Disease.

I don't know anything about Gluten Intolerance so I can't speak about the levels of that and how dangerous it is to cheat. But the original poster has Celiac, so it's urgent for her to know that there aren't levels of intolerance, just different symptoms. No one has the same ones.

This sucks. Especially at Thanksgiving.

[GFinDC]

....

I don't want to think I have to walk around in my own little plastic bubble or something!

I have nothing useful to add but that won't stop me!

This might help:

Bubble suit

[Skylark]

Not scolding, but here's the reality...

No, there are not different levels of intolerances for people with Celiac Disease. If you have Celiac, you have an autoimmune disease. You may or may not have observable reactions to food, but your body is damaged from gluten. No matter how much gluten you ingest, your body is falling apart inside. Risk of cancer is high for Celiacs because your body attacks itself whenever it comes into contact with gluten. Have you heard the stats that 1/133 people have Celiac, but only 3% are diagnosed? Do you know why? Because they don't have outward symptoms that obviously point to Celiac. It takes years and years to come to the diagnosis, and many don't believe they have it even after diagnosis because they don't have diarrhea and bloating and pain after they eat gluten.

This is simply not substantiated by celiac research. Research shows that there is a wide level of sensitivity, with some celiacs even able to eat 200 ppm European codex wheat starch without antibodies or damage on biopsy. Over half in studies tolerate 20 ppm food perfectly well. Risk of cancer is ONLY elevated (not "high") in celiacs on a full gluten diet.

There are many celiacs on the board who are unusually sensitive and need some degree of support to cope. Experiences here are really not typical of what is seen in studies of people with celiac disease.

You need to learn what additives contain gluten and how to buy and prepare food with no gluten ingredients. If you still have problems, you may have an unusual level of sensitivity and you will need to learn more about cross-contamination.

[Korwyn]

Jenn, I agree. You were reading my mind. Kim, I'm sorry if it sounds harsh and overwhelming, but I agree with Jenn. If you have celiac disease there is no 'acceptable amount' below what she described, which is the FDA cutoff of 'gluten-free'. The question you asked is really, 'how much can I get away with before I feel bad?' In some ways it is easier and better for your health I think if you are (or become) a 'super-sensitive' because your body lets you know right away. For those that don't have noticeable external symptoms immediately there is always the worry, "Am I getting glutened and don't know it?" I'm super-sensitive to gluten, soy, and casein (dairy protein). I react to things that are 'gluten-free' by both FDA and European standards, and at first it seemed like a curse. I usually can't even eat most gluten-free products that are produced in a shared facility. I remember thinking one night as I was awake again with a panic attack from CC, "Isn't it enough that I have celiac disease, can't I get away with ANYTHING?!?" Eventually over the last year I began to realize that in a way it was a blessing.

So, back to your original question, yes you need to work through these things. Any plastic cutting boards with scarring, non-stick and nylon cookware which is scratched and/or can't be run through the dishwasher, these things need to go.

[jenngolightly]

This is simply not substantiated by celiac research. Research shows that there is a wide level of sensitivity, with some celiacs even able to eat 200 ppm European codex wheat starch without antibodies or damage on biopsy. Over half in studies tolerate 20 ppm food perfectly well. Risk of cancer is ONLY elevated (not "high") in celiacs on a full gluten diet.

There are many celiacs on the board who are unusually sensitive and need some degree of support to cope. Experiences here are really not typical of what is seen in studies of people with celiac disease.

You need to learn what additives contain gluten and how to buy and prepare food with no gluten ingredients. If you still have problems, you may have an unusual level of sensitivity and you will need to learn more about cross-contamination.

Oh yes, I meant to say "higher" not "high". But I'll have to respectfully disagree about the research.

[psawyer]

...which is the FDA cutoff of 'gluten-free'.

That would be the FDA PROPOSED rule for gluten-free. It is at this point still nothing more than a proposal.

This topic expands on that.

Open Original Shared Link It has not yet become an official rule.

[cap6]

This is the most confusing thing about Celiac. I'm not trying to be rude here, just trying to understand since I was recently told I was being over the top about CC.

If you are super sensitive and eat a tiny crumb of bread that makes you sick it is destroying your insides.

If I am not super sensitive but eat that same tiny crumb of bread it is still doing just as much harm to my insides except that I may not be physically aware of it.

Is that pretty much correct?

[psawyer]

The reality is that parts per million is not the answer. You react to the total amount of gluten ingested. If you eat one slice of 20 ppm bread, that is the same as four slices of 5 ppm bread, or one tenth of a slice of 200 ppm bread. The total amount of gluten is the same in each case.

[weluvgators]

And some of us here are dealing with both Celiac AND Gluten Allergy.

And I need a helmet - that bubble suit was missing the most important part. I need protection for my eyes, nose and mouth. I just don't understand this "gluten free" nonsense of considering that up to 20 PPM is in any way permissible. But I am a biased allergy sufferer who lost my "tolerance" (never mind it was trashing my skin and other organs while I was "tolerant", but at least I could breathe with exposure, unlike now) when I went gluten free.

[kareng]

Maybe one of those suits that the CDC wear when dealing with infectious diseases. On a tv show, they were a lovely red color. If we all wear those, we might get some publicity for Celiac Disease.

[Skylark]

Oh yes, I meant to say "higher" not "high". But I'll have to respectfully disagree about the research.

So what have you seen in the scientific literature that suggests healed celiacs who have no antibodies or villous damage on biopsy need to be hypervigilant?

Here are my references that substantiate the safety of traces of gluten in most (but not all) celiacs. There are always folks who drop out of the studies because they feel unwell so there are definitely differences in sensitivity.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

For folks with positive blood tests it's fairly easy to determine what level of vigilance necessary. If you feel well and your antibodies fall to normal levels, you're eating a diet that works for your body.

[RideAllWays]

So what have you seen in the scientific literature that suggests healed celiacs who have no antibodies or villous damage on biopsy need to be hypervigilant?

Here are my references that substantiate the safety of traces of gluten in most (but not all) celiacs. There are always folks who drop out of the studies because they feel unwell so there are definitely differences in sensitivity.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

For folks with positive blood tests it's fairly easy to determine what level of vigilance necessary. If you feel well and your antibodies fall to normal levels, you're eating a diet that works for your body.

If you didn't have antibodies or villi damage would you even have a celiac diagnosis?

[GFinDC]

Maybe one of those suits that the CDC wear when dealing with infectious diseases. On a tv show, they were a lovely red color. If we all wear those, we might get some publicity for Celiac Disease.

Hey Crayon,

That might not be a bad idea. We could all wear the same color shirts or something and do a flashmob type thing some day. Maybe for next celiac awareness month. I don't think the bubble suits would be nessecary for that though. Sounds like fun eh?

[Skylark]

If you didn't have antibodies or villi damage would you even have a celiac diagnosis?

The person at the start of this thread who was asking about CC was diagnosed by antibodies. If you do not have antibodies or villous damage there is no way to tell what eating gluten does or doesn't do.

[plumbago]

Not scolding, but here's the reality...

No, there are not different levels of intolerances for people with Celiac Disease. If you have Celiac, you have an autoimmune disease. You may or may not have observable reactions to food, but your body is damaged from gluten. No matter how much gluten you ingest, your body is falling apart inside. Risk of cancer is high for Celiacs because your body attacks itself whenever it comes into contact with gluten. Have you heard the stats that 1/133 people have Celiac, but only 3% are diagnosed? Do you know why? Because they don't have outward symptoms that obviously point to Celiac. It takes years and years to come to the diagnosis, and many don't believe they have it even after diagnosis because they don't have diarrhea and bloating and pain after they eat gluten.

There's a simple way to illustrate how much gluten you can ingest before your body will turn on itself and start attacking your organs (autoimmune diseases do that). Take a slice of bread and cut it into 5000 pieces. Now eat one piece. That's how much will make your body sick.

What I recommend is reading up on not only Celiac, but on what an autoimmune disease does to your body. The most lethal is Cancer. Others for Celiacs are osteoporosis, infertility, leaky gut syndrome, ms, eczema, and the list goes on and on. There's more to your health than gas and diarrhea here. Your life is changed with this diagnosis. There is no cheating with Celiac Disease.

I don't know anything about Gluten Intolerance so I can't speak about the levels of that and how dangerous it is to cheat. But the original poster has Celiac, so it's urgent for her to know that there aren't levels of intolerance, just different symptoms. No one has the same ones.

This sucks. Especially at Thanksgiving.

I must say I find myself increasingly grateful for this forum. But what I am noticing is that there are certain shall we say unresolved points. This above - spectrum or no spectrum - is one of them. For me, in this instance it comes down to, ok, so now I'm at my Dad's. The only hand lotion in the bathroom is Aveeno. I have to use it. So yes, I'll be careful. But two hours after an application, is it ok for me to grab a handful of ice for my water or not? Has it absorbed sufficiently? And even if it hasn't, will I react or will it adversely impact me?

In my opinion, there are substantive big questions that are still outstanding on this forum, and yes, perhaps in science in general. For example, right now I am reading Dangerous Grains. on p. 14, the authors state, "World renowned neurological researcher Dr. Hadjivassiliou, as a conseuqence of observing gluten sensitization in over half of his chronic neurological patients, has joined many [others] in calling for inclusion of non-celiac gluten sensitivity." So in other words - let's not make a distinction, they say. Something else, celiac disease is not just a disease that damages just the GI tract. The antibodies damage all organs they come in contact with. And it is possible therefore that the GI tract is fine while antibodies are circulating.

In short, I appreciate this blog, but it is extremely challenging to work out and understand the science, and doing this while also applying it to our daily lives and living and the kitchen - well that is one tall order!

[realmaverick]

I would advice you not to concern yourself with CC at this stage. Going gluten free, is enough stress to start with, without adding in extra complications.

Avoid gluten, read labels properly, eat healthily.

If you randomly get more sick, then maybe consider CC.

I don't give a hoot about it right now. I hope I never have to. I don't want to live my life in fear, which is what I consider those who have to worry about CC, are doing. I don't envy them, that's for sure.

I'm hoping my sensitivity is much less server.

[Tina B]

I was diagnosed with Celiac last Friday. I started the diet then. I keep reading here about CC. I am wondering if I really should be as worried about it as people here are? I need to see if I do ok with cutting out all gluten first, then I will see if I am so sensitive to flour floating in the air at Thanksgiving. by the time I get to our dinner, everything will be cooked already so I'm not going to panic over possible CC. Are there people here who are not sensitive to CC? Or does everyone make sure they are never near wheat/gluten of any kind even if you aren't eating it?

I just don't get it. I';m sure people are more sensitive than others are, right? There's got to be different levels of intolerance, right?

I don't want to think I have to walk around in my own little plastic bubble or something!

I am sure some people might be that sensitive, however you will learn if you are. I have been doing this for 20 years and use the common sense approach and don't get too anal over it. I'm careful about the obvious like not putting my bread on the cutting board where others have made a regular sandwich without cleaning it first. I wouldn't use a measuring cup usd for regular flour without washing it etc. I don't have 2 sets of cookware for gluten and non gluten. The dishwasher works just fine. I am not anal about sitting at a table where someone else is eating bread or paranoid about flour in the air. Besides if you inhale it it is in your lungs and not in contact with your colon. 20 years ago there was not much special labeling. I had to learn to recognize ingredients and just have never let it take over my life. I have been to Europe and ski trips and traveled a lot. My only requirement is that menus are in English. (definitely not a problem in most tourist areas) Once in a while I have made a bad choice but for the most part it's pretty easy.

I don't feel the need for long discussion about my celiac with anyone. I am the only one who needs to understand it. I ask questions in restaurants and am happy that in the last few years more restaurants are labeling or having sepererate menus. However, if they don't it's no big deal. I just look for grilled items baked potatoes,salads and ask a few questions. At least in the more upscale restaurants they have been more than happy to accomodate special requests like leaving off breadcrumb toppings etc.