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yolo

Work Week Random Cc

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I am wondering if other people here have noticed getting CC'd from going about their business in the day--like getting cc'd from doorknobs, handling money, reading a book from the library, sharing papers with someone to read etc. Up until recently I thought what I was experiencing was due to other reasons--ie. from an old whiplash I recovered from some years ago but still does not like it if I spend a lot of time engrossed reading a book for instance. Now I am wondering if its due to not washing my hands often enough and then putting my hands to my mouth.

What alerted me was an event on Thursday after I walked to the bank. As I was leaving I picked a burr out of my sock and noticed I must have scratched myself on something earlier. My leg had some blood on it, so without thinking I put my finger to my tongue and then wiped the blood away. Then I realized "uh, oh!" and spit out my saliva.

Unfortunately a couple of hours later I started to get a migraine with sinus congestion and neck and upper back soreness, a typical CC reaction for me. I rushed to the store after work and got a homeopathic for headaches, which thankfully worked. This weekend I have gradually been coming out of it--whereas the homeopathic got rid of the headache, my old spinal and hip injuries have been acting up. Also typical of gluten CC on the way out...

It seems that most every work week now since I got badly glutened in early August and then ill with the flu for about 5 weeks, I have had a CC episode which often extends into the weekend. I am starting to examine my habits more and where in heavens name I could be getting this cross contamination. My boyfriend has also been experiencing similar problems--though his CC usually comes from being at work. It definitely is not our diet.

So I am wondering, am I getting excessively paranoid, or am I right to be concerned about these very trace Cross Contamination issues?

Thankfully the homeopathic remedies are helping. Nevertheless, am I just psyching myself here or is this real? Has anyone else here experienced random glutening from such trace CC too?

I am starting to think I should go around wearing gloves or something....and a mask far more often.

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I know EXACTLY what you mean! I do not think you are paranoid at all. I won't even shake hands with people at church because they have a table load of pastries and donuts every Sunday morning and everyone is pigging out on them. They touch the door knobs, the coffee creamer and sugars, they walk into the service with the donuts, and then when the pastor says everyone should greet their neighbors, they start hugging and shaking hands. As for me? The second they say "greet your neighbors" I sprint like a gazelle to the bathroom and avoid it! I use a napkin to open the doors, I use a napkin to get sugar and cream for my coffee, and I am careful about everything else I touch there. I also am careful not to touch my face, especially my mouth area. I watched a man just this morning using the coffee creamer, with a donut sticking out of his mouth. He shoved it in there to free his gluteny hands for coffee making.

Shopping carts; I always use the sani wipes before using carts because people put their kids in the shopping carts and let them eat cookies. The kids touch the handle with their gluteny fingers.

Restaurants; I use a napkin to hold the salt and pepper shakers, because gluteny hands used them, and who knows if the waitress wiped them down good? I also use a wet napkin or baby wipe to wipe the edges of the table where the waitress might miss wiping and gluteny hands have touched. My husband jokingly calls me Niles Crane. But, he actually helps me wipe stuff and is vigilant at keeping me safe and out of accidental CC.

I like to go to a thrift store that also doubles as a food pantry; they get a ton of breads, cookies, and donuts and pastries in there. The thrift store volunteers walk around eating the stuff all the time. In fact, I had to step back one day because one of the ladies were talking to me and she was accidentally spitting cookie crumbs while talking. She kept taking bites, talking with her mouth full and spitting the wheaty crumbs. She asked me why I stepped back and I said "because I have a severe wheat allergy and your spitting crumbs my way". She felt bad, wasn't embarrassed and now they watch themselves when I am in. They even tell me when the airborne wheat is extra bad because of a new shipment, and then they close the doors of the pantry area so that the fumes are not as bad on me in the thrift store area. They're the nicest ladies....

So, it is a fact, society walks around eating wheat products and touching everything. We can most certainly get sick from this. Have you ever watched a kid in a waiting room eating a cookie and touching everything, including the toys? A celiac child could get cc'd in a play area for sure!

I think getting CC'd at work is a most probable scenareo. People are clueless, they have no idea that their wheat products are like rat poison to some people, like us. :blink:

There's nothing wrong with having sani, or baby wipes in your purse, to use to wipe questionable things, like phones, door knobs....etc etc

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Before I knew I had celiac, I knew I had really sensitive skin. If I touched anything and touched my face, I'd break out. Or if I wore short sleeves and had a meeting where I leaned on a table, my arms would break out. If i used a communal phone, I'd break out. Etc, etc, etc.

If I knew then what I know now....

I HATE shopping carts. And I hate that the corn tortillas are next to the wheat ones. I hate those stylus pens at the card swipe machines in the checkout lane.

I'm so glad it's not just me!

I wear fingerless gloves a lot to protect my palms (they break out easy), but have been thinking about gloves with fingers for grocery shopping. I'm pretty good at not touching my own bare skin when in public but the grocery store is a gluten hazmat situation.

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Thanks Trish and Jenni--so it isn't just me. That helps though on the other hand I wish it weren't true. What a bother! I am hoping in time I will become a little less sensitive. Its very possible that the glutening in August set me up for more heightened sensitivity.

Since I discovered I have full out celiac, I have never used things like sani or baby wipes, thinking they have alcohol in them. Do they or not? I guess I will have to check them out. I can't handle alcohol, even if its supposed to be extra purified, unless its entirely gluten-free. I am also sensitive to corn due to salicylate sensitivity, however my reaction to it is not as bad as it is with gluten.

At this point I hardly ever even go into a restaurant due to both the gluten problem and sensitivity to salicylates. If I do go there, I just bring my food and water--like I do everywhere else. Air-born gluten dust is the worst.

Thanks for a heads up on places like Goodwill. The ones here don't handle food, however you can bet their customers do before they come to the store. I will make a practice now of washing everything that comes from there before I wear or use it.

I never even thought about the shopping carts. Wow!! Of course it could be a source of CC. Why didn't I even think of that?? Gloves here I come...the washable cotton ones I think.

At the doctor's office I have to avoid drinking the water due to the charcoal filter--also high in salicylates.

I am certain I get exposed to gluten at work since we deal with a lot of building materials. The writing seems to be on the wall that I need to take on a different occupation. I am a Jill of All Trades at work as property manager, very handy. However its not handy to get sick all the time. Its better to delegate that kind of work to others.

Meanwhile I am planning to do less at work and instead focus more on getting my hypnotherapy practice going. Even there I will have to be careful of where I put my hands due to clients. I probably should make a practice after greeting a client to go use the bathroom sink to wash up before we begin... not to speak of after when they leave in case I give them a hug. I may ask the client to meditate for a moment or fill out forms...Sheesh!

Like I said the homeopathics are helping avert headaches as a result of CC. Fortunately I seem to be less sensitive to small amounts of lactose now than I was. I saw a homeopathic remedy for a reaction to gluten too--but unfortunately they were in an alcohol base. I may have to track down a similar remedy on line.

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I also hate the stylus pen at the checkout card swipe. I have a small iPad stylus. I don't think it would work on the card swipes (different tip) but it made me think that I should try to find my own stylus and just use it whenever I'm at checkout.

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I use Pure and gentle baby wipes. They are fragrance and alcohol free. However, I didn’t realize until today that they have vitamin E (tocopherols) in them, which could be derived from wheat germ oil. It does not say the source. I am a super sensitive and never get sick from those wipes.

Airborne wheat is the worst for me to. I get very sick with swelling tongue, face, itchy mouth, throat, hives, dizzy, mood change, etc...It’s awful. I carry an epi-pen and a face mask in my purse, among a few other things like benadryl. My doctor prescribed prednisone for an upcoming plane trip. He wants me to start taking it 2 days before the flight. He says that I will be stuck way up in the clouds with the same recirculating air and wheat, because as we all know, everyone will be eating the stuff. He said I could die up there because if I have an anaphylaxic reaction, my epi-pen will only help for a few minutes. They will not be able to land the plane in time to save me. He said I need to take the pred to prevent the swelling shut of my airways. I am terrified.....

My local grocery store (HEB) put the gluten-free section in the bread isle!!! I can only be in that isle for about 3 minutes before I'm in trouble. So, until the manager can move the section, he took pictures of the section and emailed it to me. Now I can shop the isle on my computer, see what I want, then send an employee into the isle to get it for me.

The stylus at the check out always bothers me too, I forgot about that one.....but it is GROSS. It feels gross!!

I also hate the handle on the gas pump. So many hands have touched them, non stop, all day.....

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Although I have thought about these things, I try not to freak out about it and just wash my hands when I am able. Otherwise, I might as well live in a plastic bubble. :)

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Although I have thought about these things, I try not to freak out about it and just wash my hands when I am able. Otherwise, I might as well live in a plastic bubble. :)

I really don't think these things are an issue at all, except if you get a big gluten hit off of someone's hand or wherever and then put your hands in your mouth and that is an utterly gross thought anyway! Gluten would be the last of my worries especially during flu season. There are so many other bugs and viruses that can be transmitted through bad hygiene habits, it's really important to wash your hands well before getting them near your mouth.

I work with the world's worst gluten eaters, am extremely sensitive and get sick from crumbs but the only thing I worry about is sitting right next to someone if they are breaking crumbly bread, which can fly onto my plate. I have never gotten glutened from doorknobs or anywhere else that would be considered a stretch because I never put my hands near my mouth unless they are washed well before doing so. I think if you think things out using common sense, no one should be routinely glutened during their day.

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I really don't think these things are an issue at all, except if you get a big gluten hit off of someone's hand or wherever and then put your hands in your mouth and that is an utterly gross thought anyway! Gluten would be the last of my worries especially during flu season. There are so many other bugs and viruses that can be transmitted through bad hygiene habits, it's really important to wash your hands well before getting them near your mouth.

I work with the world's worst gluten eaters, am extremely sensitive and get sick from crumbs but the only thing I worry about is sitting right next to someone if they are breaking crumbly bread, which can fly onto my plate. I have never gotten glutened from doorknobs or anywhere else that would be considered a stretch because I never put my hands near my mouth unless they are washed well before doing so. I think if you think things out using common sense, no one should be routinely glutened during their day.

Well that is the thing isn't it? Putting one's hand to one's face and/or mouth, or opening up one's water bottle and taking a drink etc. without really thinking about it and washing one's hands first. Its having to become a lot more conscious. Its also having to go thirsty sometimes when you can't just go wash your hands or figure out a way to do it without contaminating one's water bottle etc.

Thus the hand sani wipes are not a bad idea, even if it makes one look a bit neurotic.

Certainly many of these things are nothing I would have ever considered even thinking about in the old days. But then back then I would get sick for months at a time and was never totally well.

Now I am getting CC'd roughly once a week and am trying to get at the bottom of it. I do think I am more sensitive now than I was.

I don't plan on putting myself into a bubble. I do plan however to even more consciously work on not rubbing my face/mouth or eating anything at all until after I have washed my hands--and maybe go to the extreme of using paper towels on a public bathroom door handle if I am going to eat or drink afterwards. I think maybe this is harder for some of us with itchy skin.

I may decide to get a bunch of cotton gloves if this problem of getting CC'd so frequently continues.

I do think its good to be aware that one can get CC'd at the grocery store or at the gas pump or at the Goodwill. One can get this stuff on one's hands practically willy nilly. Some of these places I hadn't even thought of, so its good to become more aware. Meanwhile bakeries and many restaurants that bake their pies or pizzas etc. are a huge no no for me--I discovered by just walking through. At my job too I go into the supply area without fear, but do remember to wash my hands afterwards. Nevertheless, maybe wearing a paper mask would be wise given how dusty many building materials are, especially sheetrock, bags of plaster and things like the gluteny Fixall etc.

I want my awareness to grow without adding in fear. Maybe here is where the hypnotherapy can help. Grow the protective habit without increasing the stress.

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He says that I will be stuck way up in the clouds with the same recirculating air and wheat, because as we all know, everyone will be eating the stuff. He said I could die up there because if I have an anaphylaxic reaction, my epi-pen will only help for a few minutes. They will not be able to land the plane in time to save me. He said I need to take the pred to prevent the swelling shut of my airways. I am terrified.....

That one scares the crud out of me, too. I don't have anaphylaxis, I have something called irritant induced VCD. When the inside of my throat is exposed to certain irritants (usually gluten proteins and a few allergens, as far as we can tell), my vocal cords begin to close and start to cut off my airway. They've never gone all the way and cut off my air supply completely but it's been close, and I've always left the area with the irritants immediately. If I was stuck in there, with no way out? I have no idea how my body would react. :(

Sucks realizing that a major form of transportation in the modern world could actually prove deadly. :huh:

My kids and those of my friends have been some very good examples of how often there's gluten cc in the world around us, I think mostly because they tend to put their hands in their mouths more, you konw? My friend's 2 year old celiac is, being two, constantly putting his hands in his mouth. Visiting any house with gluten eaters in it, he gets sick. He can just be touching the arms of the couch and chairs, the doorknobs and door, and the books and magazines. She'll keep him completely out of the kitchen and away from their food. It can be in houses where they only eat IN the kitchen. Doesn't matter; he still gets sick there.

My own daughter, who was 11 when she was diagnosed, has struggled with this. Whenever she'd go to a friend's house, she'd get sick. She was very good about washing her hands before eating, because I really pushed that at home. But sometimes it would be something just like your experience, yolo, where she's prick her finger on something and pop it into her mouth automatically. If she'd touched the couch, pet the dog, whatever...she'd be coming home sick.

After months of working on this, she's finally keeping her hands out of her mouth unless she has just washed them and has not touched ANYTHING that she knows isn't completely clean since then. And both she and I are noticing a decrease in her gluten cc reactions. I kind of wish I wasn't, because then I'd be relaxing about this as a potential issue, you know?

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Although I have thought about these things, I try not to freak out about it and just wash my hands when I am able. Otherwise, I might as well live in a plastic bubble. :)

That would be fine and dandy in a perfect world where there is a place to wash hands around every corner, but it doesn't really work that way in the real world. So, instead of being a girl in a plastic bubble, I chose to be out and about and very concious of my surroundings and potential wheat exposures. I to get a rash (hives) from contact with wheat/gluten. So, instead of "relaxing" and letting myself get sick, which I do every day just from the airborne exposure that is everywhere anyway, I chose to be vigilant about everything so that I can stay as healthy as possible, and if that means having wipes with me, wearing gloves or wearing a mask, which I am forced to do a lot, so be it. It beats an epi-pen to the leg, a trip to the hosp, or God forbid , death.

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That one scares the crud out of me, too. I don't have anaphylaxis, I have something called irritant induced VCD. When the inside of my throat is exposed to certain irritants (usually gluten proteins and a few allergens, as far as we can tell), my vocal cords begin to close and start to cut off my airway. They've never gone all the way and cut off my air supply completely but it's been close, and I've always left the area with the irritants immediately. If I was stuck in there, with no way out? I have no idea how my body would react. :(

Sucks realizing that a major form of transportation in the modern world could actually prove deadly. :huh:

Wow, your airborne VCD sounds scary. Would Prednisone help you before flying?

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You know I kind of figured this would be a "touchy subject"--lol!

Or like my brother says, you only laugh when you cry.

I think its way too easy to think that one's level of sensitivity is all there is. There is however the actual reality for some of us that they/we are more sensitive than others. And they/we need the rest of everyone else to be sensitive to that fact.

Of course no one wants to live in a bubble.

Facing the sensitivity and creating strategies to deal with it, that is called growing up. If you get anaphalaxis, sweet jeez, you better be careful!

Hmm, I think my next new subject will be homeopathics and CC. I think it really is perfect how they can help. Its just the energy of a substance that they are dealing with after all. For some of us, we are nearly that sensitive to gluten etc. So it makes perfect sense that if one is also free of stimulants that the homeopathics can and do work as powerful remedies for much of what ails us, esp. if we are very sensitive, eh? Am only beginning to explore homeopathics, but am finding them to work wonders so far against my migraines as well as old spinal and hip injuries. Not a magic pill, but definitely helpful at the least.

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Wow, your airborne VCD sounds scary. Would Prednisone help you before flying?

this is one case where I would consider/plan to use a mask--a good one, not just a paper one, and forget the looks I'd get.

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Niles Crane... that's good. =) I feel like Jack Nicholson's character in "As Good As It Gets" sometimes! Not to make light of actual OCD, but I completely understand! I don't shake hands nearly as often as I used to. I'm trying to figure out good responses to that one. To cope with the hand shaking situation, things I've done/said:

"Oh, sorry, my hands are wet"

"I'd shake your hand but I just got something sticky on my hand"

"I have a cold"

Bow. Deep bow. Bow with hands in prayer position. This works really well in some cultures. Here I pretty much get funny looks, unless I'm at a yoga retreat or something :P

Hold purse in one hand, water bottle in another, look awkward and smile. Works best if you're also juggling a couple extra items. :D

If they're eating a muffin or something, and switch hands to shake, they get an actual response about me being "allergic" to what they're eating.

Most of the people I spend time with on a regular basis know that my doc still considers me "immunocompromised" ... so, it's not just the gluten issue, but germs. They get hugs or fist bumps.

Mostly, I've become more aware of not touching my mouth/face, especially when I'm doing something like grocery shopping, or in a professional hand shaking situation where I need to touch a lot of stuff. ...and I joke a lot about living in a bubble.

When I use the atm/grocery store keypad, I usually use the corner of my card (some machines are too covered for that) to hit the numbers.

I guess the secret is to figure out the difference between precautions that NEED to be taken for our own individual safety vs what is excessive. From my perspective, all of the little quirks I've adopted don't seem excessive because I have a good reason to back them up. Laying on a bed in the ER or curled up on the bathroom floor kind of breeds that mentality, doesn't it? I have to laugh at myself sometimes because it helps me (and others) cope. When it comes down to it, it's not that funny.

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I love what you wrote. (((((hugs)))) Thank you. Well said.

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I'm glad I brought this topic up and that you all are responding. I am learning a lot. It isn't just me or my boyfriend having these problems of random cross contamination. Its far more common than I thought.

From here on out I am going to be a lot more careful. Yesterday for instance I did not drink from my water bottle after I went to Lowe's and a private plumbing supply place to look for a sink. I waited til I got back to work and washed up.

I am washing my hands even more frequently and putting my hands to my face less--though with clip on shades for my glasses and itchy ears that is a little tricky, but nevertheless I am getting more conscious of where I put my hands and when and where I eat and drink.

Maybe call me a little slow in this department. However I honestly was a little less sensitive for a while there. This last year has been rough on my villi no doubt. I am getting a little better however I want to get a whole lot better. Getting sick every week is not my idea of a good time. So I want to thank you guys for your suggestions, no matter how over the top they might seem to some, they are helpful to me.

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This thread is helping me too. There were some really good things brought up that I didn't think of.

YET....I failed CC 101 just last night! I picked my husband up from the airport and he kissed me. Seconds later, my lips swelled up and got sooooo itchy. I asked him if he had been eating any wheat prior to kissing me and he said "yes, they gave out pretzel snacks on the aircraft". Whoops!!!! I washed my face and the swelling went down eventually, but I did something I didn't even realize because of brain fog. I drove to a store, and put my seat forward so my daughter could get out (auto pilot??) then proceeded to shut the door anyway, right on her. After I walked to the other side of the vehicle, my family started asking me why I did that to the poor kid. I was shocked. I had no memory of any of it. I did several more weird things in the store. It really scared my husband, he was thinking safety and getting mad at me for putting us at risk. I told him I wasn't even aware of what I was doing under the influence of wheat obviously. It was so weird. He made me promise that when I get airborne or contact glutened, I am no longer going to drive, cross streets, use money...etc. I am to sit down until fully recovered, no matter where I am...

It really scared me.....really scared me. I was so unaware and so not not right....what else have I done without realizing it when I'm all brain fogged?????? I get so discombobulated.... :(

Like I said earlier, I get sick nearly everyday, and more than once. 99.9% of the time it's airborne...I think I'm going to be doing a lot of sitting....

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I picked my husband up from the airport and he kissed me. Seconds later, my lips swelled up and got sooooo itchy. I asked him if he had been eating any wheat prior to kissing me and he said "yes, they gave out pretzel snacks on the aircraft". Whoops!!!! I washed my face and the swelling went down eventually, but I did something I didn't even realize because of brain fog.

Do you carry emergency antihistamine, and did you take it? Do you have a Food Allergy Action Plan? And are you wearing a Medical Alert bracelet? These are some of the things that we have found necessary due to our severe reactions to incidental gluten exposure. I have allergy induced asthma, so I have found it necessary to stop and monitor my breathing when I get an incidental exposure. Because of that, it also means that I get to stop what I am doing and wait for my head to clear.

Here is a Food Allergy Action Plan (FAAP) from FAAN (The Food Allergy and Anaphylaxis Network) that we have used as our template: http://www.foodallergy.org/files/FAAP.pdf .

We always carry with us our emergency medications in a clear ziplock that also includes a copy of our FAAP and our MedicAlert card. We also wear our MedicAlert bracelets at all times.

I really need to add a mask to my allergy pack - will go do that now (nothing like walking in the lobby of our local hospital to be greeted with the SUBWAY baking BREAD smell - LOVELY - run, and don't breathe . . ha, ha, ha. I also want to research if there are any more fashionable options for addressing airborne exposure (there are nose filters, but I haven't tried them yet). I dream of a self contained breathing helmet . . . I think it could be fashionable - deck it out with lots of bling. . . or something.

Sorry that you are having such severe reactions, as I understand how distressing it can be!

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Wow Gator Luver, thank you for your post.....thank you. I swear, I did not know of anyone else out there who has to hold breath and sprint like a gazelle when they detect baking wheat products!!!. As a matter of fact, our hosp bakes otis spunkmyer muffins in the lobby. I didn't know it and had to walk through. As soon as I started reacting and smelling it, I put my mask on and ran through (with everyone staring of course). I made it up to the floor I was going to and sat waiting for my husband to get done done with his procedure. Half my face was swelled up as I sat there for 3 full hours!!! Not pretty!!! I din't get the mask on fast enough.

I use a mask that works when I get it put on fast, and also stops more exposure. I just got done ordering a few more from Amazon. They work great. I wish they were prettier, and I wish that it was a cool looking breathing helmet, but no it isn't. It will have to do for now, and I am use to being stared at. I buy child sized masks because I have a small face and they fit tighter. Here are the ones I use from Amazon:

3M 1860S N95 Health Care Respirators 2-Pack (2 Small, Child Size Masks)

The link would not post. If you want to see it, just copy and post the name into amazon search.

Thank you for the link. I do not have a plan, but will make one.

1. I wear 2 medical alert bracelets, one detailed, and one that simply says "epi-pen"

2. I carry an epi-pen, anti-histamines, inhaler, allergy drops for eyes, and flo-noze.

3. I carry a mask and wear it often.

I sure like your idea with the ziplock bag and the med plan. I'll do that!

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Wow, your airborne VCD sounds scary. Would Prednisone help you before flying?

Sadly, it wouldn't do much good. Well...I don't think it would. ;) From what I understand, it's a physical problem with the muscles around the vocal cords, and things make them spasm that shouldn't affect them at all. While my bugbear seems to be my allergens, it can really be anything. Most of us with this get worse if we talk too much, or sing too much. Intubation may make it trigger, as well. Because allergens are some of my issue, there IS a possibility that something like prednisone might help - I never thought of it, honestly - except I react to predisone, too.

Ha, can't win for losing, sometimes!

The one nice thing about this, though, is that there's physical therapy that one can do to make this improve significantly, to relax the muscles around the vocal cords and make them less likely to have trouble, so I do that every day. But it only works so far. During hay fever season, there's enough crud in the air that it just makes me react like a mad woman.

Although it's much less scary to know what it is now! For a long time, everyone thought it was some form of allergic reaction, but it was happening if I inhaled vapors from cooking broth, if I inhaled the smell of coffee walking by someone(and that crap is everywhere!), all sorts of crazy stuff. MUCH better now that I know what it is, so I know what I need to do make it better, you know?

this is one case where I would consider/plan to use a mask--a good one, not just a paper one, and forget the looks I'd get.

Yeah, I really do need to do that. At this point, I wear that little paper mask quite often, and on bad days I've got a couple masks and a scarf on top of that. But it only does so-so. Have you ever seen some really good masks for allergies and such? I've heard of some, but never really found any.

Although, for a lighter moment? What kids think of the masks are so adorable. More than once, I had to quickly go into a store wearing a mask, and these little bitty kids would look at me with huge eyes. You could hear them talk to their mothers, all excited: Mommy, look! It's a doctor doing her grocery shopping!

Just too cute! :-D

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Well for really serious problems with air born particles you need to get a mask made for paint fumes etc. They are the ones with the two nozzles. Yes really. You get to look like Darth Vader. I get mine at Home Depot. I don't like to wear them that long since they are heavy and they collect moisture inside. I do use them when I have to paint or work at a work-site that has plaster dust in it since the plaster for the most part nowadays has gluten in it, as does the paint. Sheesh!!

Also I want to reiterate things that have helped me not be quite so sensitive. That is when the damage to the villi gets more cleared up so there is less leaky gut going on etc. Thus taking a very good type of probiotic is necessary, as well as fibronylitic agents that get rid of scar tissue like nattokinase. L-glutamine also goes a long ways towards soothing and healing the villi. All these items should be taken on an empty stomach. I also add in co-enzyme B vitamins (either from Now or Country Life) since with damaged villi also comes malabsorption of basic vitamins, especially the B's as well as vitamin D and some vitamin E (not more than 400 IU's a day). Taking minerals is also essential. I take E-zorb when I can afford it for the Calcium. It has a 90% absorption rate. For me nothing else comes close to working like it does. I also take liquid trace minerals and silica drops. Other things that help are NAC and Alpha Lipoic Acid.

Going for daily walks, doing yoga and meditation all help too.

Further I have found I have salicylate sensitivity. Many here find they have sensitivities to other things than just gluten. It is worth investigating. Some have to grind their own flours to make sure there is not CC from the grinding mills. Others go off all grain altogether and notice a huge difference in their health. Etc.

A friend of mine went to a naturopath and she had tests done on him which discovered he had a couple of difficult to get rid of bacteria that regular antibiotics are basically useless against. He had to take uva ursi and grapefruit seed extract. It was very painful for him; the herbs created nausea but he had to stick to it for 3 months since he had to go at it slow at first since it was just too strong for him initially. Now finally the critters are gone. He is taking a very strong kind of probiotic and he is feeling umpteen times better. He even got minorly glutened the other day, but it hardly affected him compared to how it affected him in the past. He has more healing to do since he has thyroid complications etc. but he is definitely on the path.

I am sure you know the drill. I am just saying its worth noticing and acting on. Today I noticed for instance that after I have my probiotic I lose a couple of pounds. I may need to take probiotics throughout the day or find a better kind to take or make my own say with cabbage or make 24 hour yogurt again since my weight often fluctuates 4 to 6 pounds throughout the day. Maybe I need to get some of those tests done too...

-----Bea

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I remember a woman on another list years who who was absolutely convinced she picked up CC every time she went out somewhere and handled anything. Most folks on the list were skeptical but still sympathetic because she wiped and washed and STILL got CC. After nearly becoming a hermit she discovered she actually had a completely different thing going on that she was blaming on gluten. This was too long ago for me to remember what she found was actually the problem but she suddenly had more of a life back.

richard

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I know EXACTLY what you mean! I do not think you are paranoid at all. I won't even shake hands with people at church because they have a table load of pastries and donuts every Sunday morning and everyone is pigging out on them. They touch the door knobs, the coffee creamer and sugars, they walk into the service with the donuts, and then when the pastor says everyone should greet their neighbors, they start hugging and shaking hands. As for me? The second they say "greet your neighbors" I sprint like a gazelle to the bathroom and avoid it! I use a napkin to open the doors, I use a napkin to get sugar and cream for my coffee, and I am careful about everything else I touch there. I also am careful not to touch my face, especially my mouth area. I watched a man just this morning using the coffee creamer, with a donut sticking out of his mouth. He shoved it in there to free his gluteny hands for coffee making.

Shopping carts; I always use the sani wipes before using carts because people put their kids in the shopping carts and let them eat cookies. The kids touch the handle with their gluteny fingers.

Restaurants; I use a napkin to hold the salt and pepper shakers, because gluteny hands used them, and who knows if the waitress wiped them down good? I also use a wet napkin or baby wipe to wipe the edges of the table where the waitress might miss wiping and gluteny hands have touched. My husband jokingly calls me Niles Crane. But, he actually helps me wipe stuff and is vigilant at keeping me safe and out of accidental CC.

I like to go to a thrift store that also doubles as a food pantry; they get a ton of breads, cookies, and donuts and pastries in there. The thrift store volunteers walk around eating the stuff all the time. In fact, I had to step back one day because one of the ladies were talking to me and she was accidentally spitting cookie crumbs while talking. She kept taking bites, talking with her mouth full and spitting the wheaty crumbs. She asked me why I stepped back and I said "because I have a severe wheat allergy and your spitting crumbs my way". She felt bad, wasn't embarrassed and now they watch themselves when I am in. They even tell me when the airborne wheat is extra bad because of a new shipment, and then they close the doors of the pantry area so that the fumes are not as bad on me in the thrift store area. They're the nicest ladies....

So, it is a fact, society walks around eating wheat products and touching everything. We can most certainly get sick from this. Have you ever watched a kid in a waiting room eating a cookie and touching everything, including the toys? A celiac child could get cc'd in a play area for sure!

I think getting CC'd at work is a most probable scenareo. People are clueless, they have no idea that their wheat products are like rat poison to some people, like us. :blink:

There's nothing wrong with having sani, or baby wipes in your purse, to use to wipe questionable things, like phones, door knobs....etc etc

This is very similar to how I have to live to avoid wheat contact. I don't have anaphylaxis to wheat but I break out in hives when I get it on my skin, so I know when my skin has come in contact. When I go into church I make sure my hands are full so I don't have to shake hands with the door greeter. I do shake hands during the meet and greet time during the service but I carry wipes and use them immediately afterwards.

I feel like Monk, LOL. Even with the wipes, I make sure not to touch my face and always make a beeline for the bathroom to wash my hands after the service.

If I had anaphylaxis to wheat however, I probably would not shake hands at all. I have anaphylaxis to milk so I can relate a little to the fear of people eating things.

I get very leery of all the toddlers running around with their bottles. I just try not to inreact with the kids very much (which is sad because I love kids).

At the grocery store, I wipe the grocery cart handles and the seat before putting my purse down. I don't trust salt and pepper shakers at restaurants but I will use the squeeze ketchup at Red Robin for my burger and fries. I will either ask my husband to give me some ketchup or I pick it up with a napkin.

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It just makes me want to cry to know that there are others like me out there. Thank you for posting. I swear, sometimes I feel like others think I'm a looney tune because of how I have to avoid wheat at such an extreme level. (((((hugs to you for posting))))). Sometimes, in my presence, my husband and children will be trying to explain my wheat allergy to clueless people, and it is a little awkward to watch the confused faces of the listeners. My family's favorite example is to explain how wheat is in everything, like shampoo. I swear, nobody gets this. I should talk to my family and tell them to dumb it down to bread, cookies, pasta, cake...stuff like that. They will sort of get that. They usually ask in an excited voice "there's wheat in cake????" Oh the horror....LOL.

I am truly blessed that I have such a great family. My kids do not hestitate to ask people to put away things like cookies when we are in waiting rooms. My kids get a little aggressive about it! They are 12 and 13 years old, and are not afraid to confront people when it comes to my safety. God Bless them...LOL. Someday someone won't comply, and I'll have to explain to them that they really do not have to and there is nothing we can do about it. But, so far, everyone listens to them. B)

I'm leaving on my trip in the morning. I hope my new masks are in the mail today. my current one is getting old and worn. I'm pretty scared to board the aircraft, but my doc did give me a second epi-pen yesterday....so that helps.

Boy, your milk allergy sounds bad. So, you have to take the same precauctions with milk products as you do with wheat? That must be very very difficult. Milk is everywhere too. We are a milk and wheat nation. In fact, to people from other countries, we smell like sour milk or stinky cheese because of our consumption here. Crazy question. Since you are dairy free, can you smell the milk coming off of people? Especially when they are sweating?

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