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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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Protecting Yourself From Cc At Other's Houses
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8 posts in this topic

So, for you super SUPER celiacs :P How do you keep yourself from getting cross contaminated while at friend's and families houses or at a function like a wedding etc.? How do you keep from going crazy when away from your house!?

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I act like a crazy person, refusing to shake hands and hug if someone has been eating. I also jump up and leave if there is too much gluten around.

Last event I went to was a wedding. I was sure I looked absolutely crazy. When I next communicated with the bride she apologized for not being more sensitive about the gluten crumbs, that she hadn't realized that they would be a problem. I guess I didn't look as crazy as I had thought. I just looked like I was trying not to get sick. I told her that she had no way to know and not to worry about it. It was a beautiful wedding.

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At this point, I've stopped eating when those around me are, if they are eating gluten. I'll usually eat food on my own before a meal, use the meal time to socialize if I feel like I can do it safely, and then make myself food afterward, as well. But crumbs, and flecks of food, and hands that are touching food and then nudging my plate out of the way or moving my glass or whatever else - they are just too difficult eat around and stay safe. Made me sick too frequently.

When I eat at family houses where there's gluten, I wash my hands like crazy and treat every surface like it's potentially contaminated. If I touch ANYTHING (including the back of the chair to pull it out), then I wash my hands before they touch my food, my cup, my silverware, my mouth (the latter has been the hardest one to change my behavior on). I bring my own food. I have a mat, or paper towels, that I lay down under my plate and cup. I use my own plate and silverware that I bring with me. I now try to only eat with silverware when I'm out of the house, not my hands, because the silverware is easier to ensure cleanliness with. I bring my own dish soap and scrubby to clean off my dishes. I only bring glass or stainless steel with me so nothing can get cc'd that I can't scrub off.

I know there's a few other things we do that I'm forgetting right now, too. ^_^

It sometimes DOES kind of feel a little like I"m going crazy, but every thing I do now, I do for one of two reasons.

1. Not doing it has made me sick, a lot, in the past.

2. It makes things easier in the long run.

For the things that have made me sick, it usually took a while for me to really believe what the problem was. The hand washing, for example. I used to go to a hotel room with a microwave and I'd get my safe soap and water and wash the microwave down, wash down the countertops briefly, and then try to just use that area like I would at home. Where the microwave would be 'safe,' the countertops were safe, and I wouldn't have to wash my hands after touching them.

Didn't work. I always try a bit of whatever I'm cooking to take with me on the trip, now, so I know it will be safe for me when I'm away from home. And eating food I took with me from home, that I ate safely at home, I would get sick SO frequently, still. I wouldn't make it through a single DAY of a trip without getting ill until I started washing my hands every time I touched a surface, so that's what I do now...even though it's annoying as all get out!

Many of the things I bring with me, or utilize, are more convenience issues. I bring my own plate not because I can't get someone else's plate clean, but I would have to take out their plate and scrub the crud out of it with a scrubby and safe soap, every time I wanted to eat. Easier to bring my own where at least I only have to wash it.

When I didn't put a paper towel under my plate, if my fork fell off the plate, then I had to get up and go wash it off. With a paper towel underneath, it's still safe and I can just pick it up and use it. Things like that have become more commonplace.

It's still a lot of work. I don't like it (I'm a BIG fan of not working hard. :D). And I hope someday maybe I can think of better ways to do it...maybe where gloves more often, or have a routine that touches the least stuff so I have to do the least amount of handwashing. Even saw one of those little plate-sized tents people use to cover their food at an outdoor picnic and was thinking of how convenient that might be to keep gluten-free food safe around meal-times, possibly. At the moment, though, this is about as good as I've managed to get it.

I'm looking forward to hearing what everyone else does and getting some ideas!

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I've stopped eating at people's houses. Even if they mean well they still get me sick. And they tend to get annoyed when they've specially served cut up fruit just for me and I won't eat it as the knife could have been used to cut bread just before or the cutting surface had crumbs etc. (I did get sick from cut up fruit one time and that ended my eating at someone else's house even if they try hard.) So instead I go out for a big meal just before going to anyone's house. If it is pot luck I bring one item that I can have and then I dive into it before anyone else can so there is no cross contamination with the serving spoon from touching a gluten item on someone else's plate.

Everyone looks a little confused when I say I just ate but it works better for me than getting sick. I make sure to eat a really big meal before going so that I'm convincing when I say I'm full and I'm not tempted when they are urging me to try just a bit of this or that as they know it is gluten free since they prepared it.

In terms of a wedding I did eat successfully at one but the caterer was very knowledgeable about gluten free food. If your going to something like that talk to the caterer and see how knowledgeable they are. If they aren't I would bring my own food and not eat theirs. In my case they served the food themselves, it wasn't self serve. Caters are much better about cleanliness than the general population. The non-gluten items were first in the food line so they were added to plates prior to any gluten items going on them and they had my gluten free bread wrapped up in plastic and set aside. I had a great meal and didn't get sick.

Michelle

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Thank you everyone for all your ideas! I think the hardest part for me is not keeping myself safe but keeping my girls safe. I told my husband today that I'm just going to stick them in a bubble! Kidding of course :P We went to a wedding this past weekend and brought all our own food and we, all 3 of us, got sick. It's so frustrating! I'm taking this advice though and will just have to be a little more crazy than I already am...I think the nearing holiday season has me a little extra stressed about it all as well. Anyways, thanks everyone!

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Sometimes it is just better to feign illness and stay home. If you go you will get sick, so it's not really all that made up.

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I don't know if I am super sensitive or not, but I noticed today that all the checkout lines at the grocery store, even the self-checkout ones, are covered in gluten crumbs because the grocery sells fresh-baked bread.

suffice to say I washed my jar of peanut butter and squash that I bought with soap and water when I got home. I also re-cleaned my cabinets recently and wiped down all the food that was already in 'em.

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I don't know if I am super sensitive or not, but I noticed today that all the checkout lines at the grocery store, even the self-checkout ones, are covered in gluten crumbs because the grocery sells fresh-baked bread.

suffice to say I washed my jar of peanut butter and squash that I bought with soap and water when I got home. I also re-cleaned my cabinets recently and wiped down all the food that was already in 'em.

I know! Last time we were at the store I let my girls ride on one of the little toy car shopping carts, I wiped it out really good because there were crumbs in it. Probably won't do that again! The stuff is everywhere!

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