Newly Diagnosed - Cross-contamination Worries

[Waldz1]

Hi. I am 28 and just diagnosed with Celiacs. I've been reading up on the disease and have met with a nutritionist, so I'm getting over the shock. My concern is cross-contamination as I live with my gluten-eating girlfriend. The books I'm reading seem to think I shouldn't be anywhere near anything that once came in contact with gluten. I shouldn't even buy "gluten-free products" that "are made in a facility that processes wheat".

This has my brain spinning. How can I actually avoid contamination and is it actually that serious of a concern?

[gfp]

Hi. I am 28 and just diagnosed with Celiacs. I've been reading up on the disease and have met with a nutritionist, so I'm getting over the shock. My concern is cross-contamination as I live with my gluten-eating girlfriend. The books I'm reading seem to think I shouldn't be anywhere near anything that once came in contact with gluten. I shouldn't even buy "gluten-free products" that "are made in a facility that processes wheat".

This has my brain spinning. How can I actually avoid contamination and is it actually that serious of a concern?

Yes and No....

Firstly its not REALLY difficult, it's just practice. Its like jumping in a stick-shift car the first time (presuming you drive). At first it seems a bewildering amount of things to balance and do at the same time but soon it becomes second nature.

Secondly if you cook at home then its really not that hard to eat 100% gluten-free. Obviously a few things like (normal) Pizza are out but there is a whole load of things you can eat which just don't contain gluten.

CC is important and the easiest way is just not to have gluten in the kitchen/house. If your gluten-free wants/misses gluten then the easiest is to eat it outside the house. If you do then the amount of detail can make your head spin, ie. kitchen cloths, dishwashers etc. etc. but if you kep gluten out of the kitchen then this gets a LOT simpler.

[kbtoyssni]

Hi. I am 28 and just diagnosed with Celiacs. I've been reading up on the disease and have met with a nutritionist, so I'm getting over the shock. My concern is cross-contamination as I live with my gluten-eating girlfriend. The books I'm reading seem to think I shouldn't be anywhere near anything that once came in contact with gluten. I shouldn't even buy "gluten-free products" that "are made in a facility that processes wheat".

This has my brain spinning. How can I actually avoid contamination and is it actually that serious of a concern?

Yes, CC is serious, but if you give it a few months it won't be that hard to deal with. You'll learn quickly. As for food that are made in facilities with wheat - it depends on the brand. Some are ok, some are not. Try searching for the product you want on here. I'm sure there's a thread about it.

Your girlfriend can continue to eat gluten, but you'll have to be very careful. This means you need your own toaster, your own collendar, she cannot dip a knife that's touched gluten into the mayo, you shouldn't share dishclothes between gluten and gluten-free dishes, she cannot kiss you after eating gluten unless she's brushed and mouthwashed, her lotions and makeup should be gluten-free if you kiss her face. I would recommend you each have your own area of the kitchen and that you come up with some ground rules on cleaning. Try searching for something like "gluten free family" - I know there have been threads debating making the whole household gluten-free. The general consensus is that having an entirely gluten-free house is easiest, but having gluten around is do-able with complete cooperation from all family members.

[Mr. Pep'r]

Firstly its not REALLY difficult, it's just practice.

Really! I hate to be a buzz kill but since being diagnosed with Celiac (Jul07) I actually feel worse than ever. I can not eat out (YES I tell the staff....but it is still not enough!!) without having some kind of problem even minor.

Just when I think I understand gluten I find out it may be in Vitamin E and now my wife's make-up! Even gluten in the air can cause a problem I am now find out!

When I do not feel good where do I start? What meal did I eat that could have been CC? What old utensil did I use that I should not have? Lets dump out the kitchen of all utensils, hundreds of dollars to replace everything!

This is not easy! Even more difficult for an active person who hardly has time to turn around never mind eat gluten-free meal on the road!

This is not easy at all! A couple days go past and everything is fine, then out of nowhere I am not feeling well again and do not know where to start. I can not even get my doctors to recheck my blood! I am taking this every serious and I want to enjoy a normal life and not have anxiety whenever I eat out or know that I am going to away from a bathroom for a while.

Sorry for the tone of my post but I am not a happy camper right now!

[dbmamaz]

Just want to say, nowake, that I understand your frustration. I've been off wheat and milk since november, but every few weeks i remove a few more things lol .. and just yesterday I looked at my oven mits and my jaw dropped . . .years of greasy flour ground in to them lol ... but i couldnt find any decent ones at walmart. I havent even replaced my chipped old wooden spoons ... i know i'lll get there, eventually, but every single step sometimes seems overwhelming, esp when I'm still tired and dizzy so often . ... I think what they mean is it gets easier, eventually, it will become more like habit. But i think someone posted that he'd been gluten free for over a year and still worried every time he put something in his mouth, when does that end? (Kinda reminded me about birth control worries, luckily hubby is snipped so thats gone!)

Anyways, life is a one-way trip, cant turn around now, better find a way to get used to it

[KimmyJ]

I concur! This diet is a lot of things, but as far as I can tell so far, easy is not one of them! Right now I'm living with my aunt because my husband is in Iraq, so we've got both gluten-containing and gluten-free foods here. It's a challenge to say the least. I really can't double up on all kitchen utensils here, that would be crazy expensive for me, especially since I need to replace a lot of stuff when I get back home. You and your girlfriend both need to be extremely aware of CC. I know some people don't have a reaction to a small amount of gluten, but even if you don't notice a problem, damage is still being done to your intestines. It really is a big lifestyle change, but you can definitely make it easier on yourself by educating those close to you as you learn. Good luck - there is a lot of great info on these boards!

[Waldz1]

I truly do appreciate everyone's responses, even the frustrated ones. It's comforting to know these feelings are normal. I say to myself "at least its not cancer or something worse", but I can't help but feel bad for myself at times. It is a big change. I'm in graduate school now at NYU and nearly every meal I (used to) eat out. This has become such a problem. How can I ever eat out really? Even if the staff and chef and whoever at any nearby restaurant really gives me gluten-free anything, it will inevitably have been cross-contaminated.

Josiah

[ravenwoodglass]

I truly do appreciate everyone's responses, even the frustrated ones. It's comforting to know these feelings are normal. I say to myself "at least its not cancer or something worse", but I can't help but feel bad for myself at times. It is a big change. I'm in graduate school now at NYU and nearly every meal I (used to) eat out. This has become such a problem. How can I ever eat out really? Even if the staff and chef and whoever at any nearby restaurant really gives me gluten-free anything, it will inevitably have been cross-contaminated.

Josiah

There are restaurants that are quite celiac savvy. Some even have gluten free menus, those are the ones you can trust the most. My family eats at PF Changs frequently along with Outback Steakhouse and Legal Seafood (don't know if there is one of those in NYC) . There are others. One of the key things to do in a regular restaurant is to tell them that your food needs to be cooked in a seperate washed pan. My DH almost always orders a steak and baked potato and a plain veggie and has no problems. You do need to be careful of sour cream or any cheese sauce that may come with the potato, plain butter is best. Do you like stews and pasta sauces? You can make these in large amounts to eat later in the week. A crockpot can also be helpful. There are many easy meals that can be accomplished in less time than it would take to get takeout. It is hard to get used to, especially if you haven't done a lot of cooking. But you will get used to it and once you start to feel a bit better the frustrations are easier to deal with. Don't forget that gluten is also a neurotoxin for many of us and that you may have some ups and downs due to withdrawl. That will pass.

[silk]

Hi Waldz1, and if you're new here, welcome.

I have only been at this since November 07, and it is hard, but I think that it helps if you can put this into perspective. Being careful of what we put into our bodies is so difficult that it is sometimes hard to focus on anything else. But having the stomach pain, GI problems, D and all that goes with ingesting gluten is so much more of a problem that the alternative to deal with the gluten-free diet becomes acceptable.

I am not trying to minimize what you are feeling because we ALL feel those things at one point or another and it is a day by day struggle, but as others have said here, it does get easier.

My husband and daughter have both been very supportive in eating gluten free with me. Our kitchen is not completely gluten-free. We have divided our kitchen into yours/mine/ours. Everything that we eat that is gluten-free is on one side and the "junk" food is on the other side and we are just careful not to mix them. I have my own toaster and mixer and they understand that they cannot prepare gluten products on my side of the counter/kitchen. EVER. We use a dishwasher so I guess I'm not so concerned about CC with dishes and utensils. I avoid using anything wooden. And we have our own condiments. I know they would be careful about not double dipping if we used the same stuff but if there was accidental CC, we would all feel bad and I would constantly worry about what snuck into the food.

The dining out situation is harder because we loved to do the salad bar thing at least once a week.

I typed up a message on my p.c. and made several copies. On it I briefly explained why I could not eat anything made with, or that came into contact with any gluten products. I also explained briefly the consequences if I received gluten in my food. I explained how my food should be prepared and handled and I asked that the notice be left with my food until it was delivered to me so that all who handled the food would be aware and not make a 'mistake'. Lastly, I thanked the entire staff profusely for their patience and cooperation.

I have not tried it out yet but I did visit with the manager of a restaurant last week and mentioned the notice to him and he thought that it was an excellent idea.

Hang in there. Living with it is much easier than living with the consequences.

[rpf1007]

Hi all-

I'm also new to this and I do feel like my brain is spinning with all the new info/worries. I feel like everyday I find out something new. My pots, wooden spoons etc etc never even entered my mind in terms of harboring gluten of the past until I read one of the posts today. So, I can totally relate to the original poster. Just wanted to say thanks for all the great info on these boards. Day by day I feel like I'm getting a little bit healthier!

[CeliacMom2008]

My son was diagnosed in Dec, so I too am new to this. I'm usually very upbeat and positive because it's been so wonderful to see him become healthy, but he has been glutened again this week (he was also glutened two weeks ago and a week prior to that). How do you go about finding where the glutening happens? He only eats at home, my parents', and his own food in the school cafeteria. I need this to stop, but I don't know how to find the gluten. If you can't find it how do you deal with it?

[greendog]

I found about my gluten allergy about 15 years ago and my first thought was it would be easy to stay on the diet. Over time I've come to realize that finding out is only half the battle, the other half is staying gluten free. For instance, my wife has become fairly gluten conscience, but she still will eat some food with gluten. I have to remember not to kiss her on the lips after she has eaten a BLT. If your son only eats at your house, your parents house or his own food at school then you use the process of elimination. Start with the easy one which is your house and keep a record of what he eats. If you are pretty gluten savvy then you should be able to eliminate your house pretty fast. Then do the school test, and have your son swear under oath that he isn't sneaking any food and is only eating (or drinking) what you pack for his lunch. I know this has to be tough for kids. It's bad enough for adults. If the school is clean, analyze your parents house which I believe would have the biggest number of variables. Your parents aren't as close to the problem as you, so they probably won't have the knowledge you have about what is and is not gluten. Over the past 15 years, I read more food and drink labels than stars in the sky and I still mess up some times and eat or drink something with gluten.