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Dictating What Others Can Eat Around Me?


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#1 Cypressmyst

 
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Posted 14 October 2010 - 10:02 PM

This past weekend I was at a friend's house who is also gluten-free but her husband and some of our friends are not. Half way through the night he made some corn dogs for anyone who wanted them. I have ethical issues eating meat that isnt free range and so declined, I also was fairly sure there was gluten in the batter.

So my friends are munching away and there comes that familiar headache again. I got glutened from the scent of, and talking to friends eating, the corn dogs. For the next few days all of the gluten symptoms followed: Joint pain, irritability, depression, itchy back, brain fog etc And that night I was really out of it for a while.

I feel terrible. Now I have to dictate what my friend can and cant eat in his own home? I just want to curl up in a ball and hide under a rock. :(

My Doc says I wont be this sensitive forever so there is hope but in the mean time we hang out on a weekly basis with these folks. Im pretty sure they will accommodate me (He is looking up gluten-free corn dog recipes for example) but I cant stand having to do this and Im afraid that he and the others will start to resent me. I feel like such a pain in the @$$.

My gluten-free friend says that good friends should understand and try to do what they can to make things comfortable for me while Im going through this, and I understand because I would do the same thing in a heart beat but still :blink:

I work from home and rarely go anywhere and so avoid even smelling gluten most of the time. My husband is also gluten-free.

I guess I could just use a bit of advice or pep talk or hug from other folks who have been through this. Has your sensitivity improved?

Thanks!
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#2 kareng

 
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Posted 15 October 2010 - 05:38 AM

I don't think you can get glutened from smelling but... If he was mixing up a batter, and flour and corn meal were flying in the air, it could have landed on your lips, fingers, your food or drink. Never liked corn dogs myself, but I remember they are a messy food with breading crumbs falling off as they are eaten.

Watch your drink in these situations. I always have a cup of ice water on my counter. When we are fixing some foods for the gluten eaters, I get a fresh glass after, if I can't keep my glass out of the way. The kids passing their sandwiches over my glass has left crumbs in the glass.
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#3 StacyA

 
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Posted 15 October 2010 - 06:07 AM

Some people with fish allergies respond when fish is being deep fried in the area. If the corn dogs were deep fried and gluten got airborne that could be a problem. But that almost sounds more like an allergy. I did get myself sick once making cobbler with Bisquick - which is very light and probably got airborne. Therefore you may need to avoid areas with airborne flour or deep fried battered things. Otherwise just being around people who are eating gluten shouldn't be a problem, and no, you can't dictate what other people eat around you - just don't be in the kitchen when they're cooking it.
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#4 rdunbar

 
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Posted 15 October 2010 - 08:54 AM

I've gotten to where I just refuse to be around it. It makes me feel anxious, and Ive been glutened by CC by just being at the home of gluten eaters, one time I could barely walk home ( 2 blocks) I got so dizzy, and couldn't see straight. It was pretty scary. Same thing as you, I can't pin point how I got glutened, but my friend is drinking beer, and has gluteny foods, so I just have to figure there are trace amounts all over everything at his house?
I've also gotten kind of borderline glutened where I don't get full on D, but my stools loosen up a lot by just being around gluten. I'm not sure how I got it, but I did
the worst glutenings I've had have been when I've breathed it in the air, so I can't rule out that just the smell of it is not hurting me. Sounds crazy, but I know I'm super sensitive too
sometimes I drive by a wonder bread factory, and I roll my windows up and turn off the AC, even if it's 90 degrees outside because I don't want to smell it. I geuss I can't prove that it would be harmful, but nobody can prove that it wouldn't be harmful, so I choose to play it on the safe side.
It does suck when living like this impacts your social life, and when nobody recognizes how difficult it is. People need to get it that it's more than a lifestyle choice we are making, it's a survival mechinism, and they should respect it.
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#5 Loey

 
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Posted 15 October 2010 - 09:33 AM

This past weekend I was at a friend's house who is also gluten-free but her husband and some of our friends are not. Half way through the night he made some corn dogs for anyone who wanted them. I have ethical issues eating meat that isn't free range and so declined, I also was fairly sure there was gluten in the batter.

So my friends are munching away and there comes that familiar headache again. I got glutened from the scent of, and talking to friends eating, the corn dogs. For the next few days all of the gluten symptoms followed: Joint pain, irritability, depression, itchy back, brain fog etc And that night I was really out of it for a while.

I feel terrible. Now I have to dictate what my friend can and can't eat in his own home? I just want to curl up in a ball and hide under a rock. :(

My Doc says I won't be this sensitive forever so there is hope but in the mean time we hang out on a weekly basis with these folks. I'm pretty sure they will accommodate me (He is looking up gluten-free corn dog recipes for example) but I can't stand having to do this and I'm afraid that he and the others will start to resent me. I feel like such a pain in the @$.

My gluten-free friend says that good friends should understand and try to do what they can to make things comfortable for me while I'm going through this, and I understand because I would do the same thing in a heart beat but still :blink:

I work from home and rarely go anywhere and so avoid even smelling gluten most of the time. My husband is also gluten-free.

I guess I could just use a bit of advice or pep talk or hug from other folks who have been through this. Has your sensitivity improved?

Thanks!


I'm new to this forum and sending you a BIG hug!!!! Posted Image

I was diagnosed after being bedridden for 6 wks and then moved to a new state the day after the diagnosis. I got all new appliances, cookware and stocked my panty with gluten-free products only. I was doing well on the gluten-free diet and 4 weeks ago had a flare. I spiraled downhill from there.My new GI said I had to be eating something with gluten in it. I knew I wasn't. I'm going to get a second opinion. I'm very lucky that my husband is willing to eat gluten free. My son didn't have a choice over the summer but he tested negative and is enjoying whatever he wants at school.

This forum has been a blessing for me. I realize now that I can be getting "glutenized" at the market and I'm trying to be really careful. I do realize I need to find my triggers and started the elimination diet two days ago (chicken, rice, and apples right now) and my pain is a little better. I'm an unemployed elementary and specical education teacher and haven't even submitted the paperwork in my new district and state to start subbing. My son just started college so my income is necessary.

If you ever need an ear let me know. I'm also an avid researcher so if you ever want me to look something up let me know.

Loey
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#6 Cypressmyst

 
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Posted 15 October 2010 - 01:54 PM

I know I can get glutened from scents. Not a doubt in my mind. I walked out of a Walgreens one block away from a Pizza place and started feeling sick (headache again)then I got a good whiff of the Pizza place. My first reaction was Mmmm that smells good and then I went...oh crap I have a headache! Ahhhh! Gluten! *Screamed into the night.

Then there was my trip to the grocery store where I went down the oil isle. Concentrating on the oil on the right side of the isle I was half way down when I noticed my headache again...I turn and the whole left side of said isle is Flour! Held my breath and ran out but the damage was done. Hadn't licked my lips or anything, I was there for all of 10 seconds before the headache set in.

This past weekend I was two rooms away from the kitchen in which the Corn Dogs were being fried. I never went in there and my drink was not exposed to CC. I was about 2 or 3 feet away from my friend who was talking to me as he ate. Given how quickly I react I think it was talking to him that did it more than the scent in the air, but given the Pizza and Flour issues I've had I can't rule it out. :(

Last month my boss was talking to me after drinking a beer. I got light headed and real brain foggy but no headache that time, joint aches and itchy back followed that night.

Smells are simply small airborne particles of whatever it is we are smelling (try not to think about that too hard) so why wouldn't gluten be airborne? It could get through the mucous membranes in the nose, eyes, or even penetrate the skin, let alone falling into the mouth. See my new post about skin penetration in the Research section.


Thank you for the hug, I really do need it. :wub: I have hope that I won't be this sensitive forever, once they can heal my leaky gut/ leaky skin issues, but it is extremely draining and taxing in the meantime.

I'm not ready to be a shut in yet though, for now I'm relying on my friends to do what I would do if the situation was reversed.

Thanks so much for your stories and advice everyone. I very much appreciate the support and the brainstorming as to what could be at fault. ;)
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#7 WheatChef

 
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Posted 15 October 2010 - 04:08 PM

I don't think you can really call it being "glutened" Since your account is somewhat new to the forums I'm guessing (perhaps inaccurately) that you've only just recently made the switch to gluten free in the past few months. During the first couple of months it's almost impossible to tell what has really gotten you and what's just your body adjusting or your mind telling you that you should feel ill.

As any recovering addict can tell you familiar surroundings and smells that were once associated with the offending compound can trigger physiological reactions that technically aren't real. I say technically because you're not actually being exposed to the compound but your brain tells your body it has been and as a result your body acts like it has anyways. This is part of why recovering addicts are strongly advised to change their friends and habits to include new places and activities that don't involve them being around what they've given up, just smelling a beer can make a recent alcoholic have neurochemical changes!

For someone like us this can be pretty difficult because it's not just a matter of staying away from bars, clubs, drug dens or w/e. We would pretty much have to avoid leaving our house altogether! This however is probably not the direction you want to go in while you're trying to make positive life changes and the complete aversion to such surroundings is a double edged sword. In avoiding being near people consuming gluten you avoid the possibility of your brain triggering another false glutening but you also avoid habituating your brain to the concept of being around gluteny environments without eating it yourself. You can ask your friends to avoid all gluteny foods whenever you're around but it's really probably best for the speed of your recovery if you don't.

Gluten can be airborne in the case of an environment with heavy usage of cake or AP flour which is so fine that it can kind of float in the air, however in the case with normal gluten containing objects (like even that same cake flour baked into an actual cake) the gluten itself isn't a volatile compound which means that it doesn't go airborne like a smell does. Some compounds are volatile, some aren't; gluten isn't.
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#8 Cypressmyst

 
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Posted 15 October 2010 - 06:39 PM

What I'm reading is:

I don't think you can really call it being "glutened" Since your account is somewhat new to the forums I'm guessing (perhaps inaccurately) that you've only just recently made the switch to gluten free in the past few months. During the first couple of months it's almost impossible to tell what has really gotten you and what's just your body adjusting or your mind telling you that you should feel ill.

As any recovering addict can tell you familiar surroundings and smells that were once associated with the offending compound can trigger physiological reactions that technically aren't real. I say technically because you're not actually being exposed to the compound but your brain tells your body it has been and as a result your body acts like it has anyways. This is part of why recovering addicts are strongly advised to change their friends and habits to include new places and activities that don't involve them being around what they've given up, just smelling a beer can make a recent alcoholic have neurochemical changes!

For someone like us this can be pretty difficult because it's not just a matter of staying away from bars, clubs, drug dens or w/e. We would pretty much have to avoid leaving our house altogether! This however is probably not the direction you want to go in while you're trying to make positive life changes and the complete aversion to such surroundings is a double edged sword. In avoiding being near people consuming gluten you avoid the possibility of your brain triggering another false glutening but you also avoid habituating your brain to the concept of being around gluteny environments without eating it yourself. You can ask your friends to avoid all gluteny foods whenever you're around but it's really probably best for the speed of your recovery if you don't.

Gluten can be airborne in the case of an environment with heavy usage of cake or AP flour which is so fine that it can kind of float in the air, however in the case with normal gluten containing objects (like even that same cake flour baked into an actual cake) the gluten itself isn't a volatile compound which means that it doesn't go airborne like a smell does. Some compounds are volatile, some aren't; gluten isn't.


And what I'm understanding is: It's all in your head.

That being said I do appreciate the thoughtful reply and that you are trying to help, I'm just a little worn on the whole "its strange so it must be made up" line of thought.

I'm 4 months into this but have done copious amounts of research in that time (Averaging 10 hours a day easy). So I'm new, but not fresh out the box so to speak.

I just don't see how a psychosomatic reaction could cause me to have a rash 3 days after being exposed to gluten unless I was actually exposed to it. And if my mind truly tricks my body into having such a reaction then doesn't it make it every bit as real and dangerous as if I'd eaten the gluten?

My Doc wasn't surprised at all by my level of sensitivity and said that it should improve as I heal my gut. He didn't say anything about it being in my head, though I didn't ask. Either way though what does it matter, the end result is me having a bad headache and not being able to concentrate for the rest of the night if I'm exposed to it. What fun is that for a Saturday night?

So the debate rages on, airborne or not airborne? This thread has some interesting insights and asks some good questions. Ever thought about airborne gluten?
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#9 Loey

 
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Posted 16 October 2010 - 08:37 AM

I know I can get glutened from scents. Not a doubt in my mind. I walked out of a Walgreens one block away from a Pizza place and started feeling sick (headache again)then I got a good whiff of the Pizza place. My first reaction was Mmmm that smells good and then I went...oh crap I have a headache! Ahhhh! Gluten! *Screamed into the night.

Then there was my trip to the grocery store where I went down the oil isle. Concentrating on the oil on the right side of the isle I was half way down when I noticed my headache again...I turn and the whole left side of said isle is Flour! Held my breath and ran out but the damage was done. Hadn't licked my lips or anything, I was there for all of 10 seconds before the headache set in.

This past weekend I was two rooms away from the kitchen in which the Corn Dogs were being fried. I never went in there and my drink was not exposed to CC. I was about 2 or 3 feet away from my friend who was talking to me as he ate. Given how quickly I react I think it was talking to him that did it more than the scent in the air, but given the Pizza and Flour issues I've had I can't rule it out. :(

Last month my boss was talking to me after drinking a beer. I got light headed and real brain foggy but no headache that time, joint aches and itchy back followed that night.

Smells are simply small airborne particles of whatever it is we are smelling (try not to think about that too hard) so why wouldn't gluten be airborne? It could get through the mucous membranes in the nose, eyes, or even penetrate the skin, let alone falling into the mouth. See my new post about skin penetration in the Research section.


Thank you for the hug, I really do need it. :wub: I have hope that I won't be this sensitive forever, once they can heal my leaky gut/ leaky skin issues, but it is extremely draining and taxing in the meantime.

I'm not ready to be a shut in yet though, for now I'm relying on my friends to do what I would do if the situation was reversed.

Thanks so much for your stories and advice everyone. I very much appreciate the support and the brainstorming as to what could be at fault. ;)


Hello again and more HUGS Posted Image I'll be here to give them to you whenever you need them!!!!

I went to a rock concert last night (Roger Waters performing The Wall) and I had decided to wait in the car while my husband, son and my son's friend had dinner. I figured that was safer than sitting in a restaurant inhaling foods that could CC me even if I didn't eat. The I get into the concert and was surrounded by beer drinkers. They also decided to talk loudly through the concert. I politely asked them to keep it down as the tickets cost a fortune and they were actually all right about it. My son complimented my "mad" social skills after the concert (rare from an 18 year old boy).

I do have a wicked headache today. I am also on day 4 of the elimination diet so that can be adding to my headaches but the diet seems to be helping the pain right now and I wouldn't have even made it to the concert yhe way I was feeling before the diet.

I went to the grocery store today and literally held my breath whenever I could. I have a capsule endoscopy on Monday and needed apple juice for my liquid fast since all I'm eating right now is chicken, apples and rice.How do I remove the state I live in from my profile?
I'm here whenever you need me. This forum has literally saved me from just laying in bed all day and helped to turn me into a self advocate.

Loey

P.S. I wish I had the money to open up a gluten-free Market/Cafe. I can dream, right?
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#10 Skylark

 
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Posted 16 October 2010 - 09:27 AM

And what I'm understanding is: It's all in your head.

First, I'm sorry you're having such a tough time. It sounds like you have to deal with an extreme sensitivity. I'm fortunate enough to be able to be in the same room with gluten with no troubles.

Wheatchef was very careful to point out that the mind and body are inextricably linked. I'd use the word neurophysical rather than psychosomatic as there is a pejorative connotation to the word "psychosomatic". Obviously if you're sick, you're sick. We all completely believe you got sick from being in the same room as gluten. The question is of mechanism, and what you and other hypersensitivie celiacs need to do to avoid it. Gluten does not vaporize as the molecule is too big and not volatile. Even if it did, you wouldn't "smell" it. Your sense of smell is attuned to much smaller molecules, so the smell of bread is mostly small aromatic compounds released from the wheat and yeast as they bake.

That means you're either having a neurophysical reaction to the smell, you are allergic to some of the aromatic compounds in wheat, or there are tiny bits of gluten mechanically pushed into the air. My bet is that you're reacting to tiny flour particles that have been mechanically pushed into the air, much the way people with extremely bad peanut allergies react if someone is eating peanuts nearby. I got mad when I couldn't eat my gluten-free trail mix on an airplane because of someone with a peanut allergy (and all they offered me was pretzels :angry: ) so I did some research. It turns out there are a couple reports in the medical literature of allergic people reacting to airborn particles from steam (wheat allergy and boiling pasta) and to other people eating peanuts. There are people with peanut allergies who even react to the old peanut dust in the airline seat upholstery. Until your immune system settles down a little, you will probably have to excuse yourself from places where people are coooking and eating gluten.
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#11 Loey

 
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Posted 16 October 2010 - 10:31 AM

First, I'm sorry you're having such a tough time. It sounds like you have to deal with an extreme sensitivity. I'm fortunate enough to be able to be in the same room with gluten with no troubles.

Wheatchef was very careful to point out that the mind and body are inextricably linked. I'd use the word neurophysical rather than psychosomatic as there is a pejorative connotation to the word "psychosomatic". Obviously if you're sick, you're sick. We all completely believe you got sick from being in the same room as gluten. The question is of mechanism, and what you and other hypersensitivie celiacs need to do to avoid it. Gluten does not vaporize as the molecule is too big and not volatile. Even if it did, you wouldn't "smell" it. Your sense of smell is attuned to much smaller molecules, so the smell of bread is mostly small aromatic compounds released from the wheat and yeast as they bake.

That means you're either having a neurophysical reaction to the smell, you are allergic to some of the aromatic compounds in wheat, or there are tiny bits of gluten mechanically pushed into the air. My bet is that you're reacting to tiny flour particles that have been mechanically pushed into the air, much the way people with extremely bad peanut allergies react if someone is eating peanuts nearby. I got mad when I couldn't eat my gluten-free trail mix on an airplane because of someone with a peanut allergy (and all they offered me was pretzels :angry: ) so I did some research. It turns out there are a couple reports in the medical literature of allergic people reacting to airborn particles from steam (wheat allergy and boiling pasta) and to other people eating peanuts. There are people with peanut allergies who even react to the old peanut dust in the airline seat upholstery. Until your immune system settles down a little, you will probably have to excuse yourself from places where people are coooking and eating gluten.


I taught a little girl who's face would swell up if she was in the cafeteria with anyone who ate peanut butter. She wasn't able to eat at any of the tables (someone may have eaten it there previously). I had her have lunch in my classroom and checked all my students lunches before they brought them in the classroom. Those were the pre-Celiac days when I could teach. Can't wait to feel better to be able to do that. We need the income and I went back to grad school at 50 to become an elementary and special ed teacher. Right now I'm unemployed and haven't even submitted my subbing paperwork because I need to feel better.

Loey
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#12 rdunbar

 
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Posted 16 October 2010 - 10:36 AM

I don't think you can really call it being "glutened" Since your account is somewhat new to the forums I'm guessing (perhaps inaccurately) that you've only just recently made the switch to gluten free in the past few months. During the first couple of months it's almost impossible to tell what has really gotten you and what's just your body adjusting or your mind telling you that you should feel ill.

As any recovering addict can tell you familiar surroundings and smells that were once associated with the offending compound can trigger physiological reactions that technically aren't real. I say technically because you're not actually being exposed to the compound but your brain tells your body it has been and as a result your body acts like it has anyways. This is part of why recovering addicts are strongly advised to change their friends and habits to include new places and activities that don't involve them being around what they've given up, just smelling a beer can make a recent alcoholic have neurochemical changes!

For someone like us this can be pretty difficult because it's not just a matter of staying away from bars, clubs, drug dens or w/e. We would pretty much have to avoid leaving our house altogether! This however is probably not the direction you want to go in while you're trying to make positive life changes and the complete aversion to such surroundings is a double edged sword. In avoiding being near people consuming gluten you avoid the possibility of your brain triggering another false glutening but you also avoid habituating your brain to the concept of being around gluteny environments without eating it yourself. You can ask your friends to avoid all gluteny foods whenever you're around but it's really probably best for the speed of your recovery if you don't.

Gluten can be airborne in the case of an environment with heavy usage of cake or AP flour which is so fine that it can kind of float in the air, however in the case with normal gluten containing objects (like even that same cake flour baked into an actual cake) the gluten itself isn't a volatile compound which means that it doesn't go airborne like a smell does. Some compounds are volatile, some aren't; gluten isn't.

this is simply not true.
the WORST glutenings ive had have been from airborne gluten from bread being sliced, not from flour in the air. it was a huge amount of bread, at a party on a catering job, and it came on like a frieght train. my nose starting running in like 10 seconds, I lost my balance, and got so dizzy that i could barely walk. i had to hold on to things to keep from falling over. And the pain was horrible, it was like someone was tightening a vice on my head! oh, the D didnt start for a fews hours. I've gotten lesser reactions fron just being in a room with gluteny foods like pies,so i have to think the same thing can happen on a smaller scale, too.
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#13 T.H.

 
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Posted 16 October 2010 - 11:58 AM

Ah hon - right there with you!!!

I've likely had this since I was 16, only diagnosed in my thirties. And I have slowly realized that I am crazy sensitive, too. :-(

And yes, I completely believe that extremely small doses of airborne gluten can get me, because the reactions are pretty specific and the reaction has happened when I had NO idea that I was around gluten until after it happened and I started looking around.

My husband has done the same thing to me with beer breath. It was awful and makes you just wanna cry at the same time. :(

I've only realized how sensitive I am over the last few months, but I've managed to find some good resources - people I've talked with, companies that have the lowest levels of gluten and such. My email is under my profile; you're welcome to email me and I'd be happy to share.

Or we could just whine together, too, LOL. ;)
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T.H.

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#14 Loey

 
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Posted 16 October 2010 - 02:01 PM

Ah hon - right there with you!!!

I've likely had this since I was 16, only diagnosed in my thirties. And I have slowly realized that I am crazy sensitive, too. :-(

And yes, I completely believe that extremely small doses of airborne gluten can get me, because the reactions are pretty specific and the reaction has happened when I had NO idea that I was around gluten until after it happened and I started looking around.

My husband has done the same thing to me with beer breath. It was awful and makes you just wanna cry at the same time. :(

I've only realized how sensitive I am over the last few months, but I've managed to find some good resources - people I've talked with, companies that have the lowest levels of gluten and such. My email is under my profile; you're welcome to email me and I'd be happy to share.

Or we could just whine together, too, LOL. ;)



I still can't get the smell of beer out of my nose from last night. Believe me the concert was worth it but I feel like I have a hangover (without the momentary benefits of drinking) today and the pain that was lessening on the elimination diet is worse today.

I'm an avid resource geek and am also happy to share any info I have. I'll be home all day on Monday (having the capsule endoscopy)and will email you some sites and info I found.

Loey Posted Image (wearing shades due to the contact beer hangover)
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#15 SGWhiskers

 
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Posted 17 October 2010 - 05:29 AM

I'm with the airborne reaction folks. I avoid the grocery store at times they might be baking. i used to have to avoid it all together. I've reacted to stuffing in a cafeteria, pizza in a staff room, and I've learned that if my extended family gets take out while I'm in the car, I need to roll down the windows for the ride home. Hot gluten seems to affect me more. Fortunately, my symptoms are typically for only the day with an inhalation if I notice it within a few minutes and remove myself from the situation. I get the yawns during harvest season when passing straw/wheat being machined. I would experiment with learning the safe distance from your friend when they eat gluten foods and try moving to the patio or near an open window. I find that once the food is in the bellies of my gluten eating coworkers, I don't trigger the neuro reaction. Offer to host the get togethers and/or visit them between meals.

If it make you feel any better, while I still react to airborne gluten, it has gotten better over the past 2 years. The first year was the worst.
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