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Dictating What Others Can Eat Around Me?


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#16 realmaverick

 
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Posted 17 October 2010 - 10:07 AM

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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#17 Muffy

 
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Posted 18 January 2011 - 11:41 AM

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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#18 Cypressmyst

 
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Posted 18 January 2011 - 05:17 PM

: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.

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#19 dilettantesteph

 
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Posted 19 January 2011 - 05:11 AM

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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#20 Gemini

 
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Posted 19 January 2011 - 07:59 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.



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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#21 lovegrov

 
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Posted 19 January 2011 - 08:01 AM

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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#22 T.H.

 
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Posted 19 January 2011 - 10:51 AM

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....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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#23 Gemini

 
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Posted 19 January 2011 - 11:17 AM

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....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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#24 weluvgators

 
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Posted 19 January 2011 - 11:24 AM

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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#25 weluvgators

 
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Posted 19 January 2011 - 11:27 AM

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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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#26 plantime

 
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Posted 19 January 2011 - 04:06 PM

WheatChef is right. My allergist calls it a "learned reaction." Gluten doesn't actually have to enter the body for the body to react. The smell of gluten-containing products triggers a memory of how sick my body was when I was eating it. The memory triggers a reaction in my body, just as though I had consumed the gluten. The reaction was unconscious, so it usually took me by surprise. It took a year before I could smell those products without getting sick. It took a lot of conscious effort on my part to retrain my body.

It is possible, however, to inhale gluten particles. If you are extremely sensitive to contamination, it is best to stay away from any kitchen that gluten is being mixed around in. Some cornbread/dog batters do contain wheat, so if the batter was mixed from scratch, it is possible that wheatflour dust was in the air, thus contaminating you. I am not overly sensitive to gluten, but I still refuse to stay in a room that wheatflour is being used in. It is a risk I am not willing to take.
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#27 Muffy

 
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Posted 19 January 2011 - 05:41 PM

Hi weluvgators,

I run the before and after school program, which means I am in the cafeteria/gym during the entire cooking and eating of breakfast. Plus I serve a daily snack and students sometimes bring thier own breakfast or snack as well. I did finally manage to get all the traces of non-gluten-free playdough out of there. And I finally trained my brain to stop and think before rubbing my eyes, leaving my coffee out, and using the nearest soap or cleaner. It is a shared space though, by many all day and evening as well as a center for food. I try to avoid crumbs but they do ambush me when they are missed by a previous group or left over as evidence from a hungry and mischevious child ;).

Argh.

I actually gave up most processed things before I went gluten-free when I was eliminating sugar....yes, a long strange trip ;) As I got more comfortable I would eat some gluten-free things for the microwave here and there and noticed the frequency of my CC getting worse so I rarely do that anymore.

You know what is weird though? I ordered Girl Scout cookies from some kids knowing at the time that I wouldn't eat them and that I didn't want anybody else to either. The mind is very strange indeed...

Double Argh!

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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#28 dilettantesteph

 
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Posted 20 January 2011 - 07:27 AM

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

richard

I think that we all agree with you there. I think that we are only referring to those who are very sensitive to low levels of gluten.
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#29 T.H.

 
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Posted 20 January 2011 - 04:30 PM

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.


So more what you're arguing is that if it was just odor, nothing else whatsoever, then proteins can't come into contact with the mucus membranes and cause a gluten reaction, yes? For that aspect of it, I'd say, yeah, you're probably right. I know researchers have never detected proteins in odors (okay, so maybe I couldn't remember and had to go and look it up to be sure. ;) ). They don't have tests that are sensitive enough to actually detect 1-2ppm of gluten that I know of, so it could be argued that 1-2ppm of gluten in odors is possible, but I'm going to assume it's not.

However, I'd really question how often odors are in the air without some particulate matter as well. I know you mentioned excluding flour in the air when we're discussing reacting to a smell, for the sake of argument. I honestly have never hunted down a study on the matter, but I've read more than once that flour particles can stay in the air for up to 24 hours. And anything that's been cooked in oil can be aerosolized with the oil and get into the air, as well. So most of the time, I imagine that a strong gluten smell will have some level of gluten in the air with it. A bag from a bakery is handled and a bit of flour on the outside goes up, whatever gluten that has settled during the day or night is kicked up, dusted off, pushed around, gets on the fans, etc... There would be a constant swirling of dust with gluten cc floating around areas where the smell is strong, typically.

And if that's the case, then while the reaction is of the 'flour in the air' variety, and small amounts, at that, it still means that for sensitive folk, there is a reaction in the same place and time as we are smelling the thing with gluten. Although I think that technically you're right, because to the best of our knowledge, there is no gluten protein in the actual odor. But that still means people can have a physical reaction in the presence of a smell, even if it might not actually be the scent that is causing the trouble.

And yeah...this is not an issue for most celiacs. But it also doesn't mean that it's in someone's head.

Just as an aside, I absolutely believe that we can develop a learned response. I always find studies with placebos fascinating. One recently on anti-depressives was very interesting, where placebos were just as effective as the anti-depressives...but with fewer side-effects. So this is not that I don't believe this can happen. I HAVE had it happen to me before: I've had this instant nausea to certain smells associated with gluten products that DON'T give me a gluten response at all. No problem, just my body's instant 'ick.'

But I think the frustration from this issue for people who say they react to a smell comes because it seems there is an assumption of...well, my interpretation is that there is an assumption that we haven't considered other options. Like perhaps we walked into a store, smelled gluten food, reacted, and our first thought was, 'oh, I can be glutened by a smell, oh crud!'

And at least for me - and some I've talked to - that's really not the case. Usually, we come to this conclusion through painful, personal research of our own. Where we have a gluten reaction every, single time we go to a particular place. Whether we've eaten or not, whether we touch anything to our mouth or not, no matter the time of day, whether there is cooking going on then or not, etc... And when the ONLY common factor associated with a reaction is that place, when we come across that smell, well, it's hard not to believe that this is what is getting us.

I would love it if researchers could figure out why my body reacts as it does, because most of the time, the reactions have to happen multiple times in the same place before I even start thinking of a place and a smell as a possibility. And perhaps a case could be made that after that point, my own head is creating a reaction that lasts for days. But not in the beginning, for most of mine, because for the longest time, I just didn't pay enough attention to make it an issue.
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Son: gluten intolerant
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#30 Lisa

 
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Posted 20 January 2011 - 05:57 PM

A great discussion! :)
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