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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dictating What Others Can Eat Around Me?
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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

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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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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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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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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

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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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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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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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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 rolleyes.gif 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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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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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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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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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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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 cool.gif (wearing shades due to the contact beer hangover)

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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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I personally don't believe you can get "Glutened" by smelling it. Though I'm sure if there's a lot of ground wheat particles in the air, it could have an effect.e

I think perhaps you have more wrong with you than just Celiacs and thus a gluten free diet isn't making you 100% well.

I'm finding it more and more obvious that those with celiacs, are blaming gluten for each and every time they feel sick.

If it were true, and being around foods with gluten in it made me sick. I'd rather be sick for the rest of my life, than live my life by such extreme restrictions.

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I know this thread is old, but it has been very helpful.

I have been gluten-free for about 9 months and have been feeling so much better until recently. At firstI thought it was the hoildays with the parties and house guests and all that figured I was getting CC'd that way. But it is getting worse, like it is building up in my system and I am freaking out because I can not go back to living with that kind of pain and I can't think through the brain fog to get anything done.

Now I realize it is most likely where I work, in an elementary school. I get so dizzy and confused right after the school breakfast is served that I sometimes have to stop in the middle of the floor for a minute to get my balance. I get too confused to even do my job well after that. A few hours later the headaches start and last all day, sometimes for several days. The rash and itching are back and constant. I have not eaten any gluten and I don't touch it at work. My co-workers do because they know I shouldn't be. I have been very careful and while I have not done an actual elimination diet yet I have cut my food choices way back and only feel a bit better on Sundays but feel terrible again by lunchtime on Monday once back at work. When it is pancake or cinnamon roll day, it is worse plus I even get a lttle cough to go with. When a kids talks to me with cracker breath I feel dixzzy and forget what I am trying to say. My black moods are coming back and I am facing the possibility of having to leave my career, which I love. I was on sabbatical when I went gluten-free and it took two weeks after being back before I had to start looking for the secret source which was right in front of me.

Knowing that others have had simialr issues makes me feel less crazy.

Loey, it must have been so hard to leave teaching. I am trying to get accept a simialr situation, I am so depressed!

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:lol: Realmaverick can believe anything he wants, it doesn't change the facts.

I had been getting better lately with help from the Gluten Doctors and supplements to get my adrenals working. Then I ate gluten (Haven't done this in 7 months or so I thought) that's when the appendix flair up came back...only it isn't the appendix, its the cecum and it is what happens to me (a non-Celiac) when I eat gluten.

I was horrified and brain foggy and itchy, but happy it wasn't my appendix about to burst. :P

Now, from what my Docs say your sensitivity will decrease, so you aren't getting so ill from just smelling it, once you take care of your adrenals, leaky gut, and reduce as much other stress as you can. It is a process though and can take up to a year or more depending on how run down your body is.

I am in stage 3 of 3 adrenal exhaustion.

Got hit hard at work the last night (Meeting at a bar with frying foods) but I have also been hit a lot with gluten in the air and in some Ruffles potato chips I was stupid enough to eat. So my resistance was already down and I am only 2 months into the supplement healing. There are bound to be set backs. :(

The bottom line is you have to heal your leaky gut and support your adrenals or this will never get any better.

:doublehugs:

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You smell it because particles bind into receptors in your nose. If you smell it, there are particles in the air. Yes, it isn't the neurological response of noticing the scent that gets you, it is the particle itself. The levels are very low at that point and only the most sensitive will react.

If you smell it, it is there.

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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.

I don't think I could have worded this better myself and it shows you have a really good grasp on the mechanics of Celiac Disease. I have a hard time, sometimes, being around smells myself but are they a true glutening? No, they aren't and I am not that overly sensitive, mind wise, for it to offend me when I know I am having a psychosomatic reaction. I really believe it's the bodies way of protecting the food intolerant/allergic from actually taking a hit. I would go one step further and state that it is very similar to a Pavlovian response. Gluten laden foods tend to be have strong odors, especially those which are fried, and I too will get a headache if forced to inhale that smell for a period of time. It is not a response that would activate the autoimmune system, though, as much as some would like to believe that. Celiacs would be housebound, with all the offending odors present in today's food obsessed society. It does get better, over time, but if I am in a situation where the smells are giving me some grief, I just head out to fresh air and then I am fine.

I will absolutely agree that if the food became airborne, as in flour particles, and a Celiac inhaled these into their gut, that would activate your immune system and cause grief.

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You smell it because particles bind into receptors in your nose. If you smell it, there are particles in the air. Yes, it isn't the neurological response of noticing the scent that gets you, it is the particle itself. The levels are very low at that point and only the most sensitive will react.

If you smell it, it is there.

But are the parts of the wheat that are bad for us in those particles? I doubt it, particularly in something like baked bread.

Bottom line for the vast majority of people with celiac is that this is not something to worry about.

richard

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I have a hard time, sometimes, being around smells myself but are they a true glutening? No, they aren't and I am not that overly sensitive, mind wise, for it to offend me when I know I am having a psychosomatic reaction.... It is not a response that would activate the autoimmune system, though, as much as some would like to believe that.

Actually, preliminary studies suggest that celiacs DO have a reaction to gluten contact of mucus membranes, at least orally. There need to be more studies to figure out what exactly happens, and if this would involve the nasal cavity and eyes as well, but the results themselves showed a definite auto-immune reaction in celiacs that didn't require gluten contact with the gut. For example, the following study involved either a powder swabbed in the oral cavity or injected gluten.

http://www.ncbi.nlm.nih.gov/pubmed/10759761

So there is a real, non-psychological reaction when gluten comes into contact with the mouth - like when we inhale. Considering the nasal cavity connects to the oral cavity, even if gluten doesn't trigger a reaction in the nasal cavity, once it hits the mouth, it will. And for those of us who have trouble with gluten that isn't a gut issue (like neurological issues), is it really that hard to believe that the auto-immune reaction might include something that we can feel?

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Actually, preliminary studies suggest that celiacs DO have a reaction to gluten contact of mucus membranes, at least orally. There need to be more studies to figure out what exactly happens, and if this would involve the nasal cavity and eyes as well, but the results themselves showed a definite auto-immune reaction in celiacs that didn't require gluten contact with the gut. For example, the following study involved either a powder swabbed in the oral cavity or injected gluten.

http://www.ncbi.nlm.nih.gov/pubmed/10759761

So there is a real, non-psychological reaction when gluten comes into contact with the mouth - like when we inhale. Considering the nasal cavity connects to the oral cavity, even if gluten doesn't trigger a reaction in the nasal cavity, once it hits the mouth, it will. And for those of us who have trouble with gluten that isn't a gut issue (like neurological issues), is it really that hard to believe that the auto-immune reaction might include something that we can feel?

I think what you are talking about is apples and oranges. Anything that comes into contact with the mouth will cause a true Celiac reaction because the mouth is the beginning of the GI tract. I am not disputing that at all. Ditto for the nose and eyes because they are all connected and lead to the small intestine. That's why using eye drops or any meds for the sinuses have to be gluten-free.

I also had neuro issues from celiac disease....I had just about every issue in the books. I do not have a true Celiac reaction of any kind when exposed to smells because there is no gluten in odors that come from food. I am not talking about flour in the air, either. I react pretty strongly to a true gluten hit but it needs to be a true ingestion to any part of the GI tract and smells just aren't an issue for Celiacs, except the unpleasantness that happens when exposed to strong odors. I think there is much fear out there from the newly diagnosed and more seasoned Celiacs as to what they can tolerate....it's a lot to learn and negotiate. However, if you truly think that a gluten reaction can occur from just being in the same room as gluten, then you may experience symptoms because your body will follow suit from what your mind believes. This is part of the reason why during drug trials, no one knows who gets the "real" drug because they don't want the mind and all of it's quirky behavior getting in the way. People have been shown to improve on sugar pills when they believe it's strong medication they are being given. This is no way a slight to anyone...it's the funky nature of the human mind. Like I have stated, I think it's more of a defense mechanism than anything else...your mind is trying to protect you from something that could make you very ill, if ingested.

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Hey, Muffy, we have to work really hard to keep our kids safe at school, so I thought I would share what is working for them. The classroom should be gluten free - period. Give me specific examples if you feel that this is not feasible, but I think it should be. Encourage hand washing and tooth brushing (if you can!) for all of your students. We run a HEPA filter in each classroom as well, and the classroom that is very close to the cafeteria keeps the classroom door closed. Our oldest stays out of the cafeteria - always - she eats in her classroom. She has also pulled herself out of the gym - especially for that recess after lunch. I hope that you can figure out ways to cope if you want to! It has been a very long, slow struggle for our kids to be safely accommodated at school, but they want so much to be able to go to school that we have been working hard to figure out something that works well for all involved. They just aren't ready to give up on their dreams of going to school yet! And we are doing better this year as we have ironed out more details of what we need to do to keep them safe in such a gluten filled environment.

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I forgot one of the details of our past two years troubleshooting school . . . eliminating almost all processed foods from their diets. There was definitely some "gluten free" foods that were being packed in our DD's lunch last year that did aggravate the "school" situation. We now pack whole foods items that are washed and prepared in our home. . . we had to get rid of all of the packages. And that is not a minor detail!

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