Another Cross Contamination Question

[sandree]

I have recently discovered that I am gluten and casein intolerant. (Will put Enterolab results below.) I still need to prepare meals for my son and husband with wheat as they are not ready to eat gluten free.

My question is this. Can I prepare, for instance, a bagel for my son, and then wash my hands after I'm done and be OK? I'm not clear on whether I am supposed to avoid touching the bagel...or if it is the danger of touching the bagel and then licking my fingers later??

I believe the Enterolab results cannot really tell me if I am celiac (even though I have a celiac gene) but they do show a gluten intolerance. Do you think I am understanding that correctly? In order to confirm whether I am celiac, I would have to have a biopsy or some other blood tests (that would be inaccurate because I am eating gluten free), right?

If it is a gluten intolerance, do I need to be as vigilant about cross contamination as if it were celiac disease.

As you can see, I am still kind of confused about all this. I am definitely feeling some positive changes in my body since cutting out the gluten and casein...just want to continue to learn more about the details of how I need to carry on.

Thanks so much for your help,

Sandy

Enterolab Results

Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 19 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

[CarlaB]

I don't prepare gluten foods for anyone ... I have six kids. Anyone without a gluten intolerance is able to eat gluten outside the home. There is no danger in touching gluten unless you have a secondary allergy to it. But if it's on your hands, it will eventually make it to your mouth.

Crumbs get everywhere, and eventually will make it into your food. I just couldn't keep from getting contaminated, so we went gluten-free at home. I find no one really misses it ... most dinner food is gluten-free anyway -- meat, veggies, potatoes, rice. gluten-free bread is more expensive, but it's what we use for everyone ... but most of the time we don't eat sandwiches.

You can't really know whether you're gluten intolerant or celiac from Enterolab. I am gluten intolerant and don't carry the celiac gene, but I am every bit as sensitive as celiacs to contamination.

[Guest cassidy]

My question is this. Can I prepare, for instance, a bagel for my son, and then wash my hands after I'm done and be OK? I'm not clear on whether I am supposed to avoid touching the bagel...or if it is the danger of touching the bagel and then licking my fingers later??

The main concern is touching the bagel and then licking your fingers, or touching your face or touching your safe food. My husband eats gluten and I am very careful about wiping down the counters and not getting myself sick. I don't ever gluten myself at home, but I am very careful. I watched him make a sandwich the other day. He left crumbs on the counter and then without washing his hands touched the fridge, trash cabinet, and dish towel. I went behind him and wiped all those things down and tossed the towel in the wash.

Carla is right about dinners, making dinner gluten-free, wasn't hard. He still uses salad dressing and things like that that I don't check, but the main food items are gluten-free.

In a perfect world we would all live in gluten-free houses, but that isn't practical for some of us, and we can still make it work.

[Nantzie]

I was the only gluten-free one in the house for several months. My kids were 2 and 3 at the time, so with them eating gluten, I was pretty much covered in gluten with them crawling all over me. It ended up working out better than I thought it would.

Washing your hands after you touch a bagel, or whatever, is exactly right. There are some people here who have reactions (usually skin reactions) from touching the gluten. It's different for everybody.

What I found worked best was to work toward developing the habit of washing your hands before you touch your mouth, your food or eat anything. It cuts down on all the hand washing. It took me a while to get to that point, and until I did, I washed my hands after I touched anything gluten.

Also, Purell and other hand sanitizers don't work for removing gluten. Since it's not a bacteria that can be killed, all it does is spread it around. You need soap and water. I use SoftSoap liquid soap. Some people use baby wipes, but I'm not sure the brands they use. Also, some people get dry skin with washing their hands so much, so make sure you check to make sure your hand lotion is gluten-free if you use lotion.

You also need to make sure that whatever towel you use to dry your hands is just for you, because you don't want anyone else getting gluten on your towel. I put a hook above my kitchen sink for my own towel, so my family wouldn't use it.

Nancy

[daffadilly]

what the people say that think they know the most about celiac/gluten intolerance is that if you do not have the gene(s) for celiac then you cannot have celiac you "only" have gluten intolerance. so you have a celiac gene, you have celiac (is the way that i understand it) That said, it is really all the same thing. Try telling those of us that have two DQ1's that we do not need to be gluten-free, we know better and in my opinion having two DQ1's is worse that having anything else. my DQ1 mother died of colon cancer, that was before we found out about celiac. and yes, it does not matter which one you have you have to be just as careful of cross contamination. I am more sensitive to cc than most biopsy dx celiacs.

[sandree]

Thank you for your replies. I am going to print out this thread to show to my husband. He doesn't really believe any of this. He has seen me not eating this and not eating that for years (trying to figure out what was wrong with me). So - he probably just thinks it is another phase I am going through. I, too, am trying to wrap my mind around all this and I really appreciate your experience and help.

Sandy

[kbtoyssni]

If it were me, I would not make any gluten food. If your husband would like gluten food, he should be able to make it himself in his own gluten corner of the kitchen. A lot of foods are naturally gluten-free or can easily be made gluten-free. For things like bagels, I don't see why your husband can't cut his own. When I go home to my parents' house and make lunch for the family, I refuse to touch the gluten bread and my dad is perfectly ok with making that part of the meal himself. I would think about the risk of being glutened versus the ease/difficulty of making gluten-free food and not touching gluten foods. For me it's an easy decision.

[oceangirl]

If it were me, I would not make any gluten food. If your husband would like gluten food, he should be able to make it himself in his own gluten corner of the kitchen. A lot of foods are naturally gluten-free or can easily be made gluten-free. For things like bagels, I don't see why your husband can't cut his own. When I go home to my parents' house and make lunch for the family, I refuse to touch the gluten bread and my dad is perfectly ok with making that part of the meal himself. I would think about the risk of being glutened versus the ease/difficulty of making gluten-free food and not touching gluten foods. For me it's an easy decision.

Geez, a fellow double DQ1 agrees about the reactivity issue! A rose by any other name...

lisa

[tl2277]

I believe the Enterolab results cannot really tell me if I am celiac (even though I have a celiac gene) but they do show a gluten intolerance. Do you think I am understanding that correctly? In order to confirm whether I am celiac, I would have to have a biopsy or some other blood tests (that would be inaccurate because I am eating gluten free), right?

It depends on whether or not you need the "gold standard." Here's the way I look at it. Anyone with a gene for celiac is likely to develop it at some point in their life, all it takes is a trigger. (I read 95% of those with the gene will develop it before they die, but can no longer find where I read that, so the percentage may not be that high) So by knowing you have the gene, the only questions are if and when you will develop active celiac. So you also know that you react to gluten. (For me, that's enough to consider the gene triggered.) What else is a biopsi going to tell you? It can be an extra level of confirmation, but even if it is negative, I would not consider it safe to assume you don't have celiac. More than likely all a negative biopse would mean is that the damage has healed because of the diet or hasn't gotten that bad yet. Considering how much damage this can do in the longterm, I would say you have every reason to consider yourself celiac and be very vigilant about cross contamination.

What are the chances that someone with the celiac gene would develop an intolerance to gluten that won't one day prove to be celiac? And is that chance worth the risk of not taking every precaution now? IMHO, there are too many side effects and secondary conditions not to. Especially considering the earlier you go gluten free, the less likely you are to develop cancer and other serious side effects. It's just not worth the risk. If you are not convinced that you need to take every precaution, then you might want to do a serious gluten challenge and get the biopsi (especially if you have not been gluten free for very long, many will test positive for some time) Again, though, what do you do if it is negative??

I just don't want to end up one day with cancer, wondering if I would have gotten it if I had just been a little more vigilant, just been a bit more careful... It's just not worth it!

P.S. If anyone has statistics on the liklihood of triggering a gene, I would love to see them. Thanks!

[debmidge]

I get the impression that you are making bagels for children who are too young to prepare their own food.

This being said, I go with the advice that after touching gluten at least rinse your hands before you touch any other surface. I usually put the faucet on first, then make my sandwich for lunch, then rinse everything under the running water so that I know I didn't touch any surfaces with gluten hands.

Celiacs and non celiacs can live in peace together as long as simple cross contamination rules are followed. Sometimes some people have no choice as to who they live with. It's not easy to just say "no glluten allowed." The non celiac can eat gluten outside the house, but for some people who are on budgets that isn't do-able or practical.

I can't handle the added expense of eating out for lunch everyday. But I will have to say that 95% of my meals at home are gluten-free; the 5% is either a stray piece of bread or a frozen dinner or chicken noodle soup from can. I try as best I can to keep gluten down to a minimum.

[daffadilly]

re a negative biopsy, you can still have damage in spots that they did not biopsy. damage can be spotty, another reason I like the Enterolab test, they test for malabsorption. You got malabsorption, you got damage.

[dionnek]

I'd also like to add that you need to make sure you have different condiments (butter, peanut butter, mayo, etc.) so that someone doesn't dip a knife in, spread it on regular bread, and redip. That is a big CC issue. Or you can just teach them not to redip, but that can be difficult as sometimes you mindlessly do it (especially if you are making a sandwhich at 6am for lunch that day)

That being said, I am the only celiac in my house and we are not a totally gluten-free house. My 2 yr old and husband still have their bread and their own condiments (mainly just pbutter and butter - I buy the squeezable mayo, etc. so it doesn't touch anything), and they also have some gluteny treats that I allow, but I make sure they was their hands when done eating those things and I try not to touch them myself. I only cook gluten-free though for dinners, and they seem to be fine with that.

[megzmc3611]

"The main concern is touching the bagel and then licking your fingers, or touching your face or touching your safe food. My husband eats gluten and I am very careful about wiping down the counters and not getting myself sick. I don't ever gluten myself at home, but I am very careful. I watched him make a sandwich the other day. He left crumbs on the counter and then without washing his hands touched the fridge, trash cabinet, and dish towel. I went behind him and wiped all those things down and tossed the towel in the wash."

This is so true! I did the same exact thing with my boyfriend yesterday. Watched him make a sandwich and then touch everything in the kitchen. I ran around the kitchen and wiped everything down after him. He looked at me like I had ten heads. I wish we could have one of those black lights that you see in the crime shows on TV that detects blood, but one for detecting gluten! Then I could turn out the kitchen lights, turn on the gluten-detector-black-light, and show him how the gluten crumbs got everywhere...contaminating everything!

[happygirl]

Sandree,

I think the most important thing I can stress is to do what is comfortable for you. There are many here that live in a house with gluten, and many who live in a gluten free house. It depends on many variables...only you can decide for you! I live in a house with gluten in moderation. I feel safe doing this because my husband is 110% supportive and we are extremely careful. His biggest fear is making me sick----so he is SUPER careful. On the other hand, there are many people on this board, who have family members who are not so careful and/or don't care. In that case, they have different variables to consider than someone like me. Also, having children vs. no children and their ages can help.

Many dinner type foods are naturally gluten free, so it makes it easy for dinners. Lunches we are each responsible for, so he makes sandwiches to take with him (but cleans up, and has his own condiments, etc). We eat great at my house, too!

Here is a link to an article that was recently published about cross contamination and Celiac. Have your husband read it---it will show that you AREN'T the only one. Open Original Shared Link

If you are going to gluten free, then you need to be 100% gluten free. We are all living proof that it can be done....both with and without gluten in the house. Hope this helps.

Laura

[sandree]

Thank you so much for your replies. I think this is as much a mental change as a physical one. Just trying to accept that my daughter and I need to be on this diet 100% and that I need to advocate for myself and for her. This all started with trying the Gluten-free Casein-free diet for my daughter because one of her teachers suggested that she may have aspergers syndrome. She responded very well to the diet and we are going to start some sensory integration therapy shortly.

Anyway...I feel like I am grieving the loss of foods and also my vision of myself as this really healthy person (even though I have had chronic hives, loose stools and unexplained muscle pain for about three years...denial is a powerful thing.)

Thanks again...got the separate toaster. Now I need to tackle the 11 year old who trails crumbs after him like pigpen in a Charlie Brown comic.

Sandy

[ArtGirl]

I can only repeat what others have said. One day, after watching hubby touch every handle and knob in the kitchen after eating a gluten-filled sandwich, I suggested that he consider gluten as wet paint that doesn't ever dry and wherever he touches puts the paint on that surface. It helped some.

I also noticed that at dinner he would butter his bread first, then serve himself, thus glutening the serving utensils. He now waits until his plate is full and then fixes his bread.

Now I need to tackle the 11 year old who trails crumbs after him like pigpen in a Charlie Brown comic.

There are many snacks and gluten-free cookies, etc. that are every bit as good as gluten foods. Visit the food forum here and you'll find many recipes and cookbook references. If the snack food that your son has available to him were gluten-free, it would not only cut down on stray crumbs, but would also allow your daughter to feel more normal when at home. Eleven years old is certainly old enough to understand and it is a good character-building experience for children to begin to think about others' welfare over their own convenience (a difficult concept even for some adults!)

[happygirl]

I read 95% of those with the gene will develop it before they die, but can no longer find where I read that, so the percentage may not be that high) P.S. If anyone has statistics on the liklihood of triggering a gene, I would love to see them. Thanks!

This is factually incorrect.

Please note that these statistics involve Celiac, not non-Celiac gluten intolerance.

The latest statistic is that 1 in 133 Americans have Celiac (Dr. Fasano, UMD-

The currently identified (and, there may be more, but this covers probably 97-98% of Celiacs) genes are HLA DQ2 and HLA DQ8.

About 30-ish percent of the population has one or both of these genes.

So, just having the gene DOES NOT mean that you have Celiac, or will have Celiac.

Dr. Green, a leading Celiac expert, even describes how the role of genetics is small compared to other factors, many unknown, in developing or having Celiac.

*****Now, a statistic that is reported is that the vast majority (95-98%) of IDENTIFIED celiacs have DQ2 or DQ8...showing that it IS a player in Celiac....but the statistic is NOT that 95% of the population with these genes have Celiac.