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Glutened By Vapors


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#16 kareng

 
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Posted 17 September 2012 - 08:13 AM

I would like to suggest that posters and readers alike consider the difference between vapors from boiling grains versus distillation. In a complete distillation process gluten proteins are completely removed as I'm sure most are well aware. However, when grains are boiling in water, gluten particles do rise with vapor. When my husband is boiling grains for his beer, he is not distilling, he is cooking. Another fact that most celiacs are aware of, most beer contains gluten. Beer is not distilled. I strongly advise that evidence be posted here that vapors are gluten free (outside of the distillation process.) I'm not psycho.


First, we are not saying you are a "pyscho". I think people have politely tried to explain this to you. Many of us have gotten anxious about being around gluten. I still think some of that boiling liquid splattered around and got on something.

Beer has gluten because it isn't distilled. You do not capture the steam (vapors) and let them cool to a liquid state again. That would be distillation. You use the "soup" you have cooked in the pan to make the beer.

People don't "remove" gluten during distillation. There isn't any in the steam to remove.

Rather than asking us to scientifically "prove" distillation and how a substance changes from liquid to gas (steam) and back to liquid, perhaps, you can show us how gluten can be in the steam? If you have valid scientific evidence of this, we and the Celiac organizations and medical centers will need to re-think the thought that distilled products are safe.
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#17 kareng

 
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Posted 17 September 2012 - 08:17 AM

I appreciate that. I'm just having a hard time accepting that I'm psycho.




I think we are posting at the same time. :)

I have decided to know longer have gluten pasta in my house. Everyone likes rice pasta and corn pasta, so I will provide that. the reason I have decided not to have gluten pasta anylonger is not because I get sick from the steam but the splatter,. They boil over the pasta, it splatters gluteny pasta water all over the sink & counter edge when they drain it....etc.

This is what I bet happened to you.
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#18 Gemini

 
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Posted 17 September 2012 - 08:47 AM

Interesting how all of your strong opinions label my reactions as psychological. Actually, it's quite insulting. This brings back memories when some friends and family thought if I simply ate more gluten my body would get used to it because there's no such thing as celiac.


Our opinions were not strong, just the opinions of regular Celiacs who know you cannot be glutened by vapors. I never said you were psycho....you read into it too much. Having a psychosomatic reaction is nothing to get upset about.....it happens to everyone at some point. It's just another type of reaction and, I firmly believe, one where your mind is trying to protect your body. Strong, gluten smells still bother me. When McDonald's is making their lunch food and you can smell it outside their restaurants, it gaks me. Totally gross smell. Same with donuts....disgusting. It is not a Celiac reaction in the true sense but, after nearly dying from this disease, I tend to be very careful and avoid strong odors because they bother me. It could be the same for you or, as Kareng suggested, the pasta water got you from CC.

There is definitely no need to feel insulted. :D
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#19 Chopper

 
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Posted 17 September 2012 - 10:16 AM

A typical reaction to gluten, I think, is shared by most celiacs. In short: flu-like sickness followed by complete emptying of GI tract followed by lethargy. Do the posters here believe that extreme reaction can be caused "psychosomatically"?

I can assuredly vouch that my level of being gluten free is extreme. I do not share utensils, cooking equipment, dishes, make everything home made, eat like a tree-hugger.

If I were to listen to these posters' advice and be in the same room every time grains containing gluten are boiled, I would most-assuredly be sick the next day with flu-like reaction, emptying of GI, lethargy. I will not intentionally do that to myself since I HATE being sick. Say what you want, but in this forum of super-sensitivity, I will continue to avoid vapors from boiling grains that contain gluten.
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#20 kareng

 
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Posted 17 September 2012 - 10:25 AM

A typical reaction to gluten, I think, is shared by most celiacs. In short: flu-like sickness followed by complete emptying of GI tract followed by lethargy. Do the posters here believe that extreme reaction can be caused "psychosomatically"?



What we are saying is you aren't glutened from steam. I think I have tried to explain it several times. I even suggested an alternative way you may have been glutened - splashes or drips. There is no point in my continuing this discussion as I think I have said all I can on the subject.

You appear to have a reason to want to argue that you are not a "psycho". That is not something anyone called you. Sorry if your feelings were hurt. We were just trying to get you the correct information.
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#21 Chopper

 
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Posted 17 September 2012 - 10:40 AM

What we are saying is you aren't glutened from steam. I think I have tried to explain it several times. I even suggested an alternative way you may have been glutened - splashes or drips. There is no point in my continuing this discussion as I think I have said all I can on the subject.

You appear to have a reason to want to argue that you are not a "psycho". That is not something anyone called you. Sorry if your feelings were hurt. We were just trying to get you the correct information.


Taking into consideration every angle I can think of over the last few months, this is quite difficult to reconcile.
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#22 IrishHeart

 
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Posted 17 September 2012 - 12:17 PM

May I just suggest something here? The word psychosomatic in medical language does not mean "psycho" or crazy or mentally ill or any other derogatory or negative word. Not at all. This is a misconception.

It's a description of real symptoms (a person does not "make them up") that come about from stress or the gut/brain connection from the nervous system. It's very complex., but real.

When I smell heavy perfume on someone, for example, I get sick to my stomach, a headache and I want to hurl. It's not caused by an injury or an illness, it is a gut/brain response.

You should not take umbrage at the use of this word. I don't think anyone meant to imply anything negative or critical.


When the word was used in response to possibly explain what happened to you, it was to explain the body's very real response to something external. The smell of the beer brewing or the pasta cooking could very well evoke this response in you, but it simply cannot be because there is a level of gluten that is harmful to you in the vapors.

My husband, a senior chemist for 35 years tells me he just does not see how it is possible.

Consider this:
a milligram is a thousandth of a gram;
a microgram is a thousandth of a milligram;
a nanogram is a thousandth of a microgram;

THAT nanogram ( or even a picogram --even smaller) is maybe, possibly the level you can detect in water vapor from boiling grains. Do you see how remote this is?

You are at least a million times removed from an amount that will cause a gluten reaction.

Here is another thought:

The reason why he voluntarily went gluten-free with me was because I was very ill for years before Dx and I am very sensitive to trace gluten and he watched me labor making two different meals while trying to make sure there was no CC. He had worked in labs and knows first hand how ridiculously easy it is for cross contamination to occur.

And making beer in the house --is a disaster. That stuff sloshes everywhere. I know, I have helped him syphon into bottles many times and we did it over the open door to the dishwasher to try and catch the run off--which was not always successful. Now, set those wet sticky bottles down on the counter?----and you have a major cc issue.

We only make gluten-free beer now--but it is still a sticky, messy operation.

This is why I suggested to you that it is more likely a cc issue.

I am sorry if you think that six different members of this c.com community, with many cumulative years of experience would steer you wrong on this subject. We wouldn't, hon.

I have researched this for you all morning and I simply cannot find any evidence that gluten can be in vapors. (I found one woman's blog that mentions it, but she posted no scientific or medical references so it means nothing to me.)

I might speculate that if you have a WHEAT ALLERGY in addition to celiac, that maybe somehow it evoked an allergic response in you, but I am just guessing here.
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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

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"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


#23 Jestgar

 
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Posted 17 September 2012 - 01:26 PM

I don't think the semantics are relevant here. You got sick. You identified the situation that made you sick. I'm guessing you will avoid such situations in the future. :)

In the end, it doesn't matter what anyone else says, or does. You are responsible for your health, and you seem willing to take that responsibility seriously. You're doing the right thing. :)
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#24 SensitiveMe

 
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Posted 17 September 2012 - 06:25 PM

Chopper...Please don't be upset or take offense. I think the use of the terms psychosomatic and psychological were perhaps not the best to use. And I think what they are really trying to say is that gluten has not actually entered your body. However considering the definition I found of psychosomatic I can understand why one might be upset.

Psychosomatic...bodily ailment or symptom caused by mental or emotional disturbance in which psychological stresses adversely affect physiological (somatic) functioning to the point of distress. Psychosomatic disorders include hypertension, respiratory ailments, gastrointestinal disturbances, migraine and tension headaches, sexual dysfunction and dermatitis. Many patients with psychosomatic conditions respond to a combination of drug therapy and psychotherapy.

I would like to draw on my many years of being a nurse to say what I think may have happened. Your body perceived the presence of what has become a harmful substance to it, and it reacted. In other words your body reacted as if it had been glutened even though gluten did not acutally enter your body. This is not in your mind it has more to do with a complex system of sensory neurons. As to what was the stimuli that caused your body to react this way it could have been the vapors. But something did cause your body to detect a presence of gluten or wheat and so it reacted. The body can really be a difficult thing to understand at times.

I am sure no one here meant to upset you or deny your symptoms. They are just trying to provide correct information regarding Celiacs and/or gluten sensitivity.
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#25 Chopper

 
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Posted 17 September 2012 - 07:52 PM

I don't think the semantics are relevant here. You got sick. You identified the situation that made you sick. I'm guessing you will avoid such situations in the future. :)

In the end, it doesn't matter what anyone else says, or does. You are responsible for your health, and you seem willing to take that responsibility seriously. You're doing the right thing. :)



Thank you. Well stated!
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#26 Chopper

 
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Posted 17 September 2012 - 08:01 PM

I think the use of the terms psychosomatic and psychological were perhaps not the best to use.... your body reacted as if it had been glutened even though gluten did not acutally enter your body. This is not in your mind it has more to do with a complex system of sensory neurons. As to what was the stimuli that caused your body to react this way it could have been the vapors. But something did cause your body to detect a presence of gluten or wheat and so it reacted. The body can really be a difficult thing to understand at times.


Well thought out words, well seasoned with salt. Thank you very much!

The presentation of the posters here to portray me as simply being wrong or reacting psychosomatically did NOT sit well with me. I emailed my question to six celiac centers and/or physicians. The response I'm receiving does NOT agree with how the posters here have presented the situation. I'm not a 'told you so' kind of person, so I will simply recommend that anyone experiencing the same thing that I have should also consult with a professional and not a forum. Simply google "celiac research facilities physicians" and start emailing.
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#27 IrishHeart

 
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Posted 18 September 2012 - 03:43 AM

I am sure no one here meant to upset you or deny your symptoms. They are just trying to provide correct information regarding Celiacs and/or gluten sensitivity.


This is exactly the case. I did not deny her symptoms at all.
I have reread this thread and no one called her a "psycho" as she has stated.

I tried to explain what the word psychosomatic meant in terms of the bodily response (it's the same explanation as yours) and I tried to provide a possible and reasonable explanation for what may have happened.

If Chopper has received different information regarding the presence of gluten in steam and vapors from 6 major celiac centers that clarifies this, I, personally, would be very grateful to see it.

I love reading research and learning more about the complexities of this disease. I tried to find information about gluten molecules in vapors, but came up empty.
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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


#28 jerseyangel

 
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Posted 18 September 2012 - 05:32 AM

Chopper, I'm not gonna beat a dead horse here but if you do have evidence to support your theory, I wouldn't consider it an "I told you so", rather information that would benefit all of us. I'd be very interested to read what you have.
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#29 Gemini

 
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Posted 18 September 2012 - 06:59 AM

Well thought out words, well seasoned with salt. Thank you very much!

The presentation of the posters here to portray me as simply being wrong or reacting psychosomatically did NOT sit well with me. I emailed my question to six celiac centers and/or physicians. The response I'm receiving does NOT agree with how the posters here have presented the situation. I'm not a 'told you so' kind of person, so I will simply recommend that anyone experiencing the same thing that I have should also consult with a professional and not a forum. Simply google "celiac research facilities physicians" and start emailing.


I am sorry that you seem so offended by a completely normal occurrence that happens to many people...myself included. If I thought the term psychosomatic was so bad, I certainly wouldn't use it to describe my experience but I am not an overly sensitive person...just one who seeks out and learns the truth.
That seems to be the problem here more than anything else. If you are so convinced that forum information is so wrong, then why come here? You posted incorrect information about a Celiac reaction and then get all indignant when a number of well informed members of this forum try to correct your information, for the benefit of those new to this disease.

I, too, would like to see all the information from the 6 different Celiac centers and or physicians you contacted because apparently, they know something the rest of the Celiac experts don't. You can believe what you want, whether it's correct or not. Just don't come on here acting all offended when you don't like the responses you read. I don't sugar coat things.....there's too much of that going on already.
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#30 dilettantesteph

 
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Posted 19 September 2012 - 10:53 AM

Some of us react to smaller amounts of gluten than others. Some things that are considered to not be present at all can be present in very small amounts. I am a chemist and routinely do distillations. They are not 100.0000000% perfect. I get spectroscopic analysis of my products. There can be other things in there in small amounts, even things with much different boiling points.

As stated above. Trust your reactions. If something makes you sick, don't do it. You don't need to justify avoiding something that will make you ill.
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