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Glutened By Vapors


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#31 T.H.

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Posted 20 September 2012 - 01:51 PM

I don't know that there have been any studies on gluten particles specifically, but there have been studies on various allergens and whether particles are present in the air after processes such as boiling, frying, etc.... So far, the evidence is that there are enough particulates aerosolized by cooking processes that an allergic person can respond.

Again, this is looking at those with allergies, not Celiac Disease. However, allergies are a reaction to proteins, and gluten involves proteins, so I'm just looking at these as examples of whether or not proteins can become airborne by some process of cooking.

I'll list a couple examples. One is primarily industrial, so not as useful to this discussion. I include it merely because it briefly discusses the fact that aerosolization during the cooking process is a known issue. The second is a study with allergic individuals in a closed room where food was cooked. That may be more relevant.

This doesn't address any issues about quantities released into the air vs. quantities required for most Celiacs to react, but it does address the possibility of aerosolization.

http://www.clinicalm...ontent/7/1/4#B3
"Processing of a food, such as boiling, steaming, or frying, can also release significant quantities of particulates into the air. This aerosolization has also been identified as a potential high risk factor for sensitization by inhalation..."

http://www.ncbi.nlm....pubmed/12121190
From the Abstract:
"Subjects were exposed for 20 min to the aerosolized form of the allergen and the symptoms and the lung function were monitored. Aerosolization was achieved by cooking the food in a small room. Where possible challenges were double-blinded....The implicated foods were fish, chickpea, milk, egg or buckwheat...Our data demonstrates that, as in the case of other aeroallergens, inhaled food allergens can produce both early- and late-phase asthmatic responses..."



Oh, and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.

I've heard a lot of anecdotal reports re: sulfites in perfumes, but the closest to a 'source' I've found is 'A Consumer's Dictionary of Cosmetic Ingredients,' which said that sodium metabisulfite is used as an antifermentative in perfumes, so maybe your reaction isn't as psychosomatic as you may have thought. :)

Shauna
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#32 IrishHeart

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Posted 20 September 2012 - 03:54 PM

Oh, and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.



Thanks for your thoughts, TH! :)

I did have a reaction to all kinds of strong odors when I was very ill from the celiac--before DX .(smoke, perfume, candles, gasoline, truck or bus exhaust....those kinds of things...and holy moly when a skunk came through the property :blink: ). I have noticed I am less sensitive than I used to be, which gives credence to the theory that healing the gut may relieve those chemical sensitivities many of us suffer? I recently tried wine again and I did not have a problem (yaay!!) so maybe sulfites are less of an issue as well.

From what I understand, consumption of food with sulfites is generally harmless, unless you suffer from severe asthma or do not have the particular enzymes necessary to break down sulfites in your body.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#33 1desperateladysaved

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Posted 20 September 2012 - 05:03 PM

[oh and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.

I've heard a lot of anecdotal reports re: sulfites in perfumes, but the closest to a 'source' I've found is 'A Consumer's Dictionary of Cosmetic Ingredients,' which said that sodium metabisulfite is used as an antifermentative in perfumes, so maybe your reaction isn't as psychosomatic as you may have thought. :)

Shauna
[/quote]
Thanks,
I think I might need to look into this sulfites stuff.

Diana
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#34 carolynmay

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Posted 21 September 2012 - 12:12 PM

I would suggest that we don't know anything like as much as we need to about the way the body recognises and reacts to a substance which triggers an auto-immune response.

Just because there isn't actually "gluten" per se in steam or vapour doesn't mean the body might not recognise the smell or some kind of similarity with what it used to know as the evil gluten that triggered an almighty defense.

I too would be quite insulted at terms like "psychosomatic". I am fairly sure I react to the smell of toast for example. And I know perfectly well that this isn't because there are large gluten protein molecules floating around in the air!

Best wishes to all,

Carolyn
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#35 Gemini

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Posted 21 September 2012 - 06:41 PM

I too would be quite insulted at terms like "psychosomatic". I am fairly sure I react to the smell of toast for example. And I know perfectly well that this isn't because there are large gluten protein molecules floating around in the air!


If you react to the smell of toast, and I would assume you mean wheat toast, then you most likely had a psychosomatic reaction. That's what happens with me around strong gluten smells. It happens for many different reasons to people and why anyone would be insulted is.....well..... :blink:

To the newly diagnosed and still in the learning process....do not fear the boiling pasta water! Just don't get it on your food!
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#36 carolynmay

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Posted 21 September 2012 - 10:40 PM

If you react to the smell of toast, and I would assume you mean wheat toast, then you most likely had a psychosomatic reaction. That's what happens with me around strong gluten smells. It happens for many different reasons to people and why anyone would be insulted is.....well..... :blink:

To the newly diagnosed and still in the learning process....do not fear the boiling pasta water! Just don't get it on your food!



No - the reason it isn't psychosomatic is that I don't react at the time - and indeed it's taken me ages to work out what I think the cause is. I react the next day - my system goes into overload and kicks everything out. And it's the same deal when sitting in a room with people eating sandwiches. If it were psychosomatic I would expect to feel ill when I were aware of being in a place of gluten. But actually that doesn't happen and it never occured to me that it might so it certainly wasn't something I was "expecting". I have had to try and work out why I keep getting a bad stomach - and have started to see a pattern of being exposed to (presumably) air-borne / smell of gluten triggers the previous day.

I have been ridiculously careful about avoiding gluten for a couple of years now and basically cook everything myself from scratch to avoid any potential for cross contamination. It's been extremely good for healing the gut, but I am with people who think they become more sensitive the more careful they are I have to say.

I have a degree in Experimental Psychology by the way, and I do know a lot about psychosomatic reactions, but this is not one of them!

Best wishes, Carolyn
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#37 SensitiveMe

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Posted 23 September 2012 - 02:21 PM

The body has many physiological responses, reflexes and defense mechanisms which are not always understood or even recognized. Physiological conditioned responses of the body are widely accepted due to Ivan Pavlov and his famous experiment of eliciting the secretion of the salivary glands in dogs by the ringing of a bell. Pavlov abandoned his former career and pursued a science one. He contributed to many areas of physiological and neurological science. He went on to perform experiments on digestion and eventually published "The Work of the Digestive Glands".

I mention Pavlov because it is interesting that both posters (Chopper and Carolynmay) had the same reaction of their digestive system emptying out the next day. And so possibly it could have been a conditioned bodily response...the body detected wheat in the nearby environment and reacted just as it would have to the actual ingestion of wheat even though wheat was not actually ingested.

If the response was truly due to a physiological cause such as a conditioned response then psychosomatic would not be the correct term to use. On the other hand, if a physiological conditioned response was the cause then "being glutened" would not be the correct term to use as a true Celiac reaction did not occur. Perhaps it would be better to say you had a "Celiac-like reaction".

I believe it is fairly common and usual for people to become upset in response to someone mentioning their physical symptoms are psychosomatic. And so I don't disregard your upsetment but ask you to let it pass and move forward. Upsetment only distracts you and hinders your ability to perform well and comprehend and understand information. Better to focus on your own well-being, identifying the situations that caused you a reaction and planning on how to avoid them in the future.
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#38 IrishHeart

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Posted 23 September 2012 - 03:38 PM

I think we can all agree on this: if something makes you feel lousy, don't do it anymore.

I think we can all agree on this too: just because this reaction happened to the OP, it doesn't mean it will happen to all of us.

We could speculate all day long what caused her to feel ill, but we will never know the answer.

In regards to the technology in labs today that are available to detect small amounts of anything that may be present, well, I agree with that as well. The difficult part of all of this is---the world we live in is full of contaminants. If we really knew what was in our food and drink, we'd probably end up not eating or drinking anything. :ph34r:

At some point, we have to decide what works for us individually, based on the current understanding of gluten and how it affects the small intestine in a celiac--and how it affects the whole body--- as a result. I never could have imagined what this thing did to my body and brain.

With varying levels of sensitivity to gluten, this becomes a personal choice: what makes me feel bad should be avoided, but it does not mean everyone else will feel this way.

Case in point: I rarely eat at restaurants, but I did a few weeks ago as I was traveling and meeting up with family members.

3 of us are gluten-free. We all ordered the same dinner from the same gluten-free menu (beef tips, potato, broccoli) and I am the only one who got sick and had symptoms for 3 weeks.


Lucky me? <_< No, that's just my system--still sick from celiac and a gut still on the mend. Those are foods I eat regularly at home without issues. My doc's words? "Wow, you are very sensitive to trace cc".
Yes, thanks, Dr. G---I got that. :)

But, I do not rush to post something like : "beef tips, potato and broccoli" got me! as a result of my experience, nor do I say "you should not eat out --ever."


Because neither of those statements are universally applicable to everyone else that reads this forum, even those of us who are very sensitive.

The OP believes the gluten vapors got her. And that's fine!

But, if she emphatically states that leading celiac centers and doctors say "it can happen", it would be good of her to share this information with the rest of us sensitive types who have researched this thing to death and want to learn all we can.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#39 GFinDC

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Posted 08 October 2012 - 08:09 AM

I got sick once from sitting in a pizza place with the guy tossing pizza in the air. Throwing flour on the board and then patting it out and tossing the dough up and all that fancy - schmancy pizzza stuff they do. I suppose it was the flour in the air thing that got me. I don't get sick walking through the bakery aisle at a grocery store though.

I did a little distillation when I was younger. Distilled spirits are not just alcohol. They contain flavor essences also. If you boil your mixture at just high enough temperature to get only the alcohol boiling off, you end up with grain alcohol. Not many people like to drink pure grain alcohol. So the common process is to raise the boiling temperature near the end of the cycle to get some of the flavorings airborne in the steam. That way you get whiskey or whatever you are making instead of just pure alcohol. With vodka they try to keep most of the flavorings out though. So I think that makes it clear that other things can be carried in steam, not just water vapor. Otherwise we would all have nothing but flavorless , plain alcohol beverages to drink. Or beer or wine, which aren't distilled.

I am not saying gluten can be carried in steam, but other things certainly can be. Maybe gluten is too heavy to be carried by steam, I don't know. But other things like flavorings are not.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#40 msmini14

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Posted 12 October 2012 - 08:02 AM

After reading all of the comments and being a member on this board for a few years I have a couple of comments for this post.

1. From my understanding Chopper was venting about their glutening and just wanted some support. This is a support group.

2. I understand why people reacted the way they did. If newbies come on this site and read vapors glutened someone they are going to assume the same can happen with them.

3. I myself know that I have over reacted to situations and have felt like I have been glutened but I wasnt.

4. I can see why Chopper felt attacked on this board.

Please remember people have feelings and even if they are not relevant to you they are to the poster.
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Gluten Free going on 5 years and counting!

gluten-free is a life change and not a diet.


#41 IrishHeart

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Posted 12 October 2012 - 08:24 AM

After reading all of the comments and being a member on this board for a few years I have a couple of comments for this post.

1. From my understanding Chopper was venting about their glutening and just wanted some support. This is a support group.

2. I understand why people reacted the way they did. If newbies come on this site and read vapors glutened someone they are going to assume the same can happen with them.

3. I myself know that I have over reacted to situations and have felt like I have been glutened but I wasnt.

4. I can see why Chopper felt attacked on this board.

Please remember people have feelings and even if they are not relevant to you they are to the poster.


Your analysis tries to look at all sides and is very gracious.

Number 3 may well be the most telling--as it supports what many have said to her.

Number 2 is the primary reason why many members responded.

The members acknowledged her reactions as being real.

The members offered rational reasons for why she may feel that way (CC from gluten exposure )

and the members gave her our best advice IN SUPPORT.

That's it.

She is the one who became defensive and lashed out saying someone called her psycho (no one said anything of the kind) and then, she said she can prove it is possible with evidence from leading celiac doctors. (she has not returned)

With all due respect, no one "attacked" chopper, however-- and using that word seems unfair and inflammatory.

IMHO
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#42 msmini14

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Posted 12 October 2012 - 08:56 AM

I am glad I dont use this site for support anymore... Some come off as rude these days and not helpful.
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Gluten Free going on 5 years and counting!

gluten-free is a life change and not a diet.


#43 IrishHeart

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Posted 12 October 2012 - 09:08 AM

Sorry you feel that way. :(

I agree with you completely! Some people do come off as rude in their delivery and we do try to keep that in check.

But I guess I just do not agree with you that the OP was attacked.
That is a strong word ---and if it had happened, I would have been one of the first ones to have stepped in.

This is just my humble opinion, of course and is offered with respect for yours as well.

Best wishes,
IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#44 Gemini

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Posted 12 October 2012 - 09:17 AM

I am glad I dont use this site for support anymore... Some come off as rude these days and not helpful.


There will always be a certain segment of the population who, unfortunately, are offended by everything. You can choose whether to come here or not but your feelings are in the VAST minority. I am the one who you posted about because my comment of it possibly being a psychosomatic reaction was taken entirely out of context by the overly sensitive (and I'm not referring to gluten here). No one was rude or needs to apologize to the OP. I always strive to post accurate information so those in need of a Celiac education will get the correct info. That is much more important than not posting something because it might offend someone.

After doing this for almost 8 years (being Celiac, that is), good luck finding another site that has more compassionate, caring and smart Celiacs than this site does.
Not going to happen. Many have inaccurate and false information on the Celiac lifestyle. This one rocks so the choice is yours.
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#45 gary'sgirl

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Posted 12 October 2012 - 06:39 PM

I just wanted to point out that msmini14 never said that anyone on this board "attacked" anyone.

She just said that she could see why the OP might have felt attacked.
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