Do I Really Have To Be That Careful?

[bluckii]

I was diagnosed with CSD just before Christmas. My GI was NOT very helpful after she told me I had a severe case of this disease, so severe she's never seen levels like mine (like i know what that means). She literally gave me three peices of paper that she printed off a website with a few foods to avoid and told me I had to worry about cross contamination. She told me to look some things up on the internet then sent me on my way.

So my question to you is this...

I have read on several different forums that I shouldn't use teflon pans, wooden spoons, I shouldn't wash my glutened dishes with my non-glutened dishes...I should clean my whole kitchen and rid it of all gluteness. I have also heard that if I inhale flour I can get sick...so I should discard all of my old glutened products with a face mask and gloves. Someone even told me I needed to replace my stove, because it is contaminated with gluten. And when I get my new stove I cannot cook any glutened foods in it because it will poison my non-glutened foods.

I have read that if a glutened person comes into my house and touches my door handle...I could get glutened if I touched the handle and put my hands in my mouth.

How extreme do I have to be. It seems as if I am going to have to move into a sterile, gluten free bubble. Am I going to have to wear a gluten-mask everytime I come in contact with the outside world?

What about cleaning products, laundry detergents, soaps, make-ups? Should I avoid those that contain gluten? Am I going to have to befriend every company I buy products from to make sure I don't get glutanized?

I apologize for my sarcasm...I am feeling very overwhelmed. I think I am going to fire my GI, I feel like I just got thrown to a pack of gluten-wolves, and I am not armed with my gluten-free bubble. AAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHH......

Help me please!

Brooke

[chrissy]

brooke---i'm glad you asked these questions-------i need to know them, too. so far, we have 3 celiac children and are waiting on the test results from 3 more and my husband. it has been less than a week that we have been told to go gluten free.

christine

[bluckii]

brooke---i'm glad you asked these questions-------i need to know them, too. so far, we have 3 celiac children and are waiting on the test results from 3 more and my husband. it has been less than a week that we have been told to go gluten free.

christine

Hi Christine,

I have 11 month old twin girls. I am wondering if I should get them tested too. I am reading that this is hereditary. Although, no one in my family has had it....maybe they should get tested too.

This is such a HUGE lifestyle change isn't it? I am so concerned with x-contamination, and hidden sources I think I might just resort to a meat and vegetable diet. Whatever it takes right?

I wish you good luck with your children. God bless.

[Lisa]

Hey You Two:

Trust me, it gets easier. We all went trough that frustration period and still do, but please try not to overreact untill you learn as much as you can about this disease.

I have tried to concentrate on the things that we CAN have and not dwell on what we cannot.

First of all you need to ask celiac3270 if he would kindly send you the Delphi Forum Product List. That will help you with all products by name as, soaps, foods, hair products, meds.

I have not bought new pots and pans. I do not use wooden spoons though. If feel that the dishwasher illiminates my "Kooties". A single use toaster would be a good idea.

I really don't miss gluten, although, restaurants are a little tricky. I enjoy cooking and there are some super recipies on this forum.

When I was tested, I thought that I had Cancer, celiac disease is a blessing as an alternative. I hope that this will get you two started. Just remember that there are no questions that can't be answered on this forum. It is the best help you could ever imagine.

Good luck and keep us posted as to your progress.

Lisa B.

[Guest nini]

I think you just need to use common sense. You obviously can't live in a bubble, and you cannot let fear of getting contaminated ruin your life. If this was the case we celiac sufferers would NEVER be able to eat out at a restaurant or over at someone else's house.

No you do not need to buy a new stove, if you have teflon dishes they ARE more likely to trap gluten particles in the surface especially if it is scratched. I did replace all of my pots and pans with Stainless Steel, ONLY because I was sick of the teflon chipping. If you are going to have a shared kitchen with some gluten eaters and some gluten free, you may want to have separate areas for gluten free food prep, and you may want to reserve certain things for gluten free only, like collanders and such. Some people invest in two toasters... I just bought a toaster oven at Dollar General for $20 and use foil in it and clean it regularly.

Some people do react more strongly (visibly) to contamination, so you will have to figure out just how neurotic you have to become (J/K) no, I mean, just how sensitive you are... sure, just a molecule of ingested gluten can cause damage, but a little common sense can go a long way.

[kathy1]

I agree!!! This is very overwhelming to a newbie. My husb was recently diagnosed and the dr advised going gluten free, but gave no additional info. If it wasnt for this forum, I would be completely in the dark. To be given a life changing diagnosis with no supportive information is scary. Thank god for the internet.

[jerseyangel]

I have a few thoughts that might help ease your anxiety about this whole thing. I'm certainly no expert, but just a person who has been at this for 7 months. The problem with non stick pans is that if there are any cuts in them, gluten can get stick there and probably won't wash out. New or perfectly smooth (no cuts at all) non sticks should be fine. Wooden spoons, shared toasters, wooden cutting boards and collanders should be replaced. Clean out the silverware drawer holders if they contain crumbs--I ran mine thru the dishwasher. I rinse any dishes with gluten food residue well before putting them in the dishwasher, but they all get washed together and are fine. I use a lot of foil--not only protects my food but makes cleaning up easier. When you make sandwiches or other things, use a plate underneath. Needless to say, I wash my counter, inside of microwave, fridge handles, kitchen table, etc. each time I do dishes. We have to be careful, for sure, but once you get used to it, it's fine. One thing I don't do is use wheat flour in my kitchen any more--it gets in the air and lands everywhere, so I don't take any chances with that. I make naturally gluten-free foods at dinner so I'm not cooking both kinds of food at the same time. I kept a pan to be used for gluten containing food and have not used it yet! It really gets easier with a little time.

[jknnej]

You don't need a new stove but you do need a separate toaster oven and I would recommend getting a few new pots and pans just for you.

You don't need to wear any sort of mask when cleaning out gluten products! lol

You won't get glutened by touching someone unless you're supersensitive and they just ate a wheat sandwich or something.

even then only your skin would react, you might get itchy or a small rash but you won't get internally glutened as if you'd eaten something.

You can get it by kissing, though, if you're partner just ate bread, etc.

You should make sure your make up, shampoo, etc are gluten free.

Some examples of gluten-free stuff that I use:

Dove soap, Oil of Olay moisturizer, Pantene shamp/cond, Purex laundry detergent, Bare Escentuals make-up, and many more.

If you cook on a BBQ simply put your stuff on foil.

After awhile it is easy. Just come here and ask. we can give you lists of products we use that are available at any grocery store:)

Hang in there!!!

[Ursa Major]

Brooke, I am no expert, I have only known I have Celiac Disease since October. But I believe that some of the advice you got is good, while some of it is nonsense.

You do NOT need to replace your stove, since your food will be in pots or pans, you don't cook directly on the stove!

But you do need a new toaster, since the bread obviously touches it directly, and it's impossible to clean completely of gluten. I have two toasters in this house, one for regular bread, and one for gluten free bread.

While teflon isn't good anyway, as it has its own health hazards, you shouldn't be using teflon pans that have been used for gluten food for non gluten food. If your teflon has any scratches, it isn't possible to really clean the pans properly, and you could get glutened by cooking with them.

The best choice is stainless steel pots and pans, because you can scrub them properly. It is best if you keep certain ones to be used only for gluten free foods.

It is true that you will get glutened by somebody using regular flour in your kitchen, because traces of it will be in the air, and you will get glutened if you inhale them. Nobody is allowed to bake with regular flour in my kitchen any more.

Yes, you can get glutened by touching doorknobs. That's why you need to wash your hands more often than before (that just rings a bell with me, my whole family eats gluten foods, and I touch everything they touch and haven't followed my own advice, maybe that's why I have been sick all week).

Unfortunately, yes, you should make sure your laundry soap, dish soap, hand and body soap, shampoo, makeup, toothpaste etc. (anything that touches your skin or goes into your mouth, or you touch and then might get into your mouth when you eat) doesn't contain gluten. You will have to read every label, until you know which things are gluten free.

I am not sure about washing dishes separately, because I'd have to have my own dishes then! Maybe somebody else can answer that one, I haven't even considered it yet.

Yes, you should have your children tested (and any other first degree relatives, like brothers, sisters, parents, grandparents, etc. should get tested, since it is definitely genetic), before they actually get sick (if they have the genes, which they may not). But on the other hand, you don't really want to cook for them separately, do you? Have them tested before you start feeding them the same gluten free products you're going to eat.

Anyway, I have to go, I'll give other, more experienced, people a chance to give you advice (some of it probably better than mine).

Ursula

[Guest Viola]

Welcome to the forum Brooke. I know everyone here will help you through the over welming phase of this disease. And yes, it is a phase and will soon get to be easier. We have all been there so know how you feel. The advice so far is all sound, so I won't repeat it, as far as the stove, toaster etc. is concerned. I will however emphasize the hand washing advice that Ursula gave you. Although I don't think of gluten so much as the fact that we have a lower immune system and washing the hands often cuts down on the colds, etc. that people tend to pass on with their hands. I also tend to clean my phone more often than most people as stuff tends to get stuck on it if you have a full family. Sometimes gluten from peanutbutter & jam sandwiches, and other times viruses brought home from school or work.

Ask anything you like here and someone will be sure to come up with a quick and helpful answer

[2Boys4Me]

Open Original Shared Link

That's a link to a similar post from earlier this year from the administrator of this site about teflon and wooden utensils.

The post says that a thorough handwashing (in hot, soapy water) of all wood/teflon/cast iron should be sufficient. (The post I'm referring to is post #10)

[bluckii]

Thank you SO much for all your comments. You all eased my anxieties tremendously. I guess I can return the bubble. LOL

Seriously, thanks!

Brooke

[CMCM]

Thank you SO much for all your comments. You all eased my anxieties tremendously. I guess I can return the bubble. LOL

Seriously, thanks!

Brooke

I just wanted to add a bit more....my mom was diagnosed 40 years ago at a point where she was probably fairly close to dying...she weighed 80 lbs. and couldn't keep anything down and was sick continuously. Even today, if she inadventently gets some gluten somewhere, she gets unbelievably sick....vomiting for hours, and sick for a day or two, so she is hypersensitive to getting glutened. YET....she has made pie crusts for pies for the family for special occasions (she was very careful, and said the worst that ever happened doing that was she might feel a bit light headed or dizzy for a moment), and she cleans things carefully but not obsessively, and she shares her toaster oven with gluten and non gluten bread with no ill effects despite how sensitive she is.

[pokerprincess]

Brooke,

I have had to learn that even though I am about as nerotic as your reading about,

I am still going to get sick from time to time. Being the control freak that I am, I tried for years to refrain from getting sick. Unless we live in a gluten free bubble, we will probably have set backs. This forum helped me to see that. I am a little more relaxed about it and have given up on being the perfect celiac victim.

You will get it. Do what ever you can do for now; after awhile you won't even think about. It's kind of like

washing your hands before dinner. You just do it.

good luck! plenty of great people here any time of the day or night!

pokerprincess

I was diagnosed with CSD just before Christmas. My GI was NOT very helpful after she told me I had a severe case of this disease, so severe she's never seen levels like mine (like i know what that means). She literally gave me three peices of paper that she printed off a website with a few foods to avoid and told me I had to worry about cross contamination. She told me to look some things up on the internet then sent me on my way.

So my question to you is this...

I have read on several different forums that I shouldn't use teflon pans, wooden spoons, I shouldn't wash my glutened dishes with my non-glutened dishes...I should clean my whole kitchen and rid it of all gluteness. I have also heard that if I inhale flour I can get sick...so I should discard all of my old glutened products with a face mask and gloves. Someone even told me I needed to replace my stove, because it is contaminated with gluten. And when I get my new stove I cannot cook any glutened foods in it because it will poison my non-glutened foods.

I have read that if a glutened person comes into my house and touches my door handle...I could get glutened if I touched the handle and put my hands in my mouth.

How extreme do I have to be. It seems as if I am going to have to move into a sterile, gluten free bubble. Am I going to have to wear a gluten-mask everytime I come in contact with the outside world?

What about cleaning products, laundry detergents, soaps, make-ups? Should I avoid those that contain gluten? Am I going to have to befriend every company I buy products from to make sure I don't get glutanized?

I apologize for my sarcasm...I am feeling very overwhelmed. I think I am going to fire my GI, I feel like I just got thrown to a pack of gluten-wolves, and I am not armed with my gluten-free bubble. AAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHH......

Help me please!

Brooke

[darlindeb25]

I think everyone covered it all----if you take vitamins, be very careful of the ingredients--there are vitamins now that state wheat and gluten free. I almost made the mistake of taking a B1 that says wheat free, but it doesnt say gluten free--it may contain barley--so, it is going back. Medicines are not regulated like the food is here, so you must find out before taking if it is gluten free. It does get easier. Yes, you should probably have the twins tested. I wish my kids would get tested--they are all adults and wont hear of it. My sister and father are celiacs too, so my kids should definitely be tested. Deb

[mytummyhurts]

I wouldn't think that their would be enough gluten on a doorknob for us to get contaminated. If 200 ppm is considered safe, you basically have to rub a piece of bread on the doorknob. But you still should wash your hands because doorknobs are just dirty in general.

I'm not sure if anyone mentioned that you should get your own butter dish, peanut butter, mayo, etc.

[Guest Viola]

I wouldn't think that their would be enough gluten on a doorknob for us to get contaminated. If 200 ppm is considered safe, you basically have to rub a piece of bread on the doorknob. But you still should wash your hands because doorknobs are just dirty in general.

I'm not sure if anyone mentioned that you should get your own butter dish, peanut butter, mayo, etc.

You're right Abby about the butter dish and try and buy the mayo in those squeeze bottles, they are hard to cross contaminate. You can do ketchup, mustard etc. in those bottles too Makes life easier if you have guests that will tend to "forget".

And don't get too angry with them when they do ... Some things are so automatic in kitchens that it is easy to just do it. I had problems with using the 'wrong' pepper and such when I was first diagnosed, and I finally just grabbed all my spices and gave them to mom to get them out of the house. Now everything in my spice rack is gluten free.

[Lisa]

You're right Abby about the butter dish and try and buy the mayo in those squeeze bottles, they are hard to cross contaminate. You can do ketchup, mustard etc. in those bottles too Makes life easier if you have guests that will tend to "forget".

And don't get too angry with them when they do ... Some things are so automatic in kitchens that it is easy to just do it. I had problems with using the 'wrong' pepper and such when I was first diagnosed, and I finally just grabbed all my spices and gave them to mom to get them out of the house. Now everything in my spice rack is gluten free.

Shirley:

What's wrong with the pepper I don't recall any warnings about pepper. Should we ground our own????

[Guest Viola]

Oh Lisa ... sorry to panic you .. If your pepper says 100% black pepper it should be safe. The stuff I had in the house was bulk ... subject to cross contamination. And some restaurant peppers can have .02% starch without appearing on the label. Although good cafes use ground pepper corns now. I now use Mac Cormick spices, they are all safe.

[kevsmom]

Brooke - Welcome to the forum!

I would recommend getting a seperate colander only to be used for gluten free food. Gluten tends to get stuck in all of those tiny little holes.

It may sound silly, but at work when I use the microwave to heat up my lunch, I wash down the door and the control settings. If someone used it before me to heat up a bagel or something else gluten-ful, they probably got the door all full of gluten. If I am preparing something to eat at work, I make sure that it is on a paper plate or a paper towel instead of the counter or table that everyone uses.

I also wash my hands quite often. (I work in a healthcare setting, so that may have something to do with that anyway).

Good luck - I know you will get a lot of help from this forum. I have learned so much .

Cindy