Glutened By Vapors

[Gemini]

Gemini and Irishheart. I did not respond to this post to stir up everyone

[AsokaM82]

On 14/09/2012 at 3:14 PM, Lisa said:

 

Unless your head is hanging over the boiling pot of macaroni or boiling beer, I'm pretty certain you can not get glutened by vapors floating around the house.

 

Perhaps, handling the pasta at the fire house? In the beginning, I used to get a bit nauseated walking down the flour aisle at the grocery store, but it was just me being nervous.

I know this is an old post but hopefully you will be able to read it anyways. Actually I know for a fact you can get sick from vapors if you have Celiac. I myself have Celiac,at work some ass%$@# security guards were smoking vapours in the security office which is not allowed when I called them out on it they blew the vapors in my face. Soon after my stomach started to hurt and I tried to fight it until the end of my shift then after that I was sick for 2 days. I usually don't get sick just from being around gluten products I have to actually consume it to get sick but this time I did get sick from it and I am not the one that was smoking those vapors which by the way do contain gluten products such as wheat, rye and malt the three  products dangerous for anyone with Celiac. Saying vapors can't effect Celiacs and is just psychological is stupid and ignorant, because it can. 

[lisas11lisa]

I got glutened still trying to make regular Christmas cookies one year..breathing in the flour..I know that's what happened..I quickly put on a mask..but didn't help..last year I tried that..No flour in my house again.

[kareng]

11 minutes ago, lisas11lisa said:

I got glutened still trying to make regular Christmas cookies one year..breathing in the flour..I know that's what happened..I quickly put on a mask..but didn't help..last year I tried that..No flour in my house again.

That is swallowing flour and that happens.  The original topic was about breathing in steam or odors that do not actually have gluten pieces floating in them.  

[1desperateladysaved]

I reacted to airborne gluten in the past.  I found myself sick after holding a glass vial with gluten in it for 20 minutes.  I was ill for 2 months.  All I can say is that the brain knows that the gluten is there and goes into action.  However; so far as I can tell, this is an allergic reaction beyond celiac and most of you will never have to worry about this.  It is super-sensitive allergy which I guess may have happened to me since I was undiagnosed for so long.  I heard once people with the DQ8 genes are more prone to have reactions to airborne minute particles.  My situation I hope is not your experience.  High sympathies to you if it is.  I wish you well.

Kareng, I am sorry to hear that you had to cut gluten from your home.  However, I know there are many substitutes that one can bake with.  I hope that your family is pleased with them.

[Simi85]

Hello,

I also reacted to a gluten containing soup (my boyfriend heated a tomato soup with spelt in it) when being coincidental around the pot 'cause putting something in the oven.

But I have to say, that I also have a very extreme form of  celiac disease and react also to flour in the air, many packaged products and also certified "gluten free" products. So it's hard enough already without the steam problem and it's sometimes very exhausting that even persons who have celiac disease are not able to accept that there are even worse things that can go on in ones body than just being celiac, what is already hard enough.

It was definitely a gluten reaction, 'cause I feel it already in that moment I get gluten molecules into my body and it lasts for days with different symptoms over the days and an often experienced similar pattern. I use a diet diary to find out which products are not ok, so I can decide between products with gluten and products I have other problems with (cause I have the typical package of gluten symptoms only with gluten - but depends on the size of the (micro-) trace how strong and how long they stay..). I also think that it is more than just celiac like I react with almost all possible symptoms (digestion, skin, muscles, nerves, brain) like a celiac and additionally I have allergy like reactions like getting breathing problems, dizziness and palpitations when getting a "normal" trace of gluten directly while eating.

Yes, it seems to be a very very small group of persons who experience these reactions to extreme little traces of gluten, but that doesn't mean that it is not possible or "can not be" because the most celiacs have luckily not a slight idea how it is to experience that. It has nothing to do with psychosomatic reaction. If you get glutened from exceptionally small traces and feel like a "normal" celiac who gets a normal trace of gluten, then you are forced to be more careful (the next days maybe even scared of food) and everytime there is another product which you tried or suddenly does not work anymore, you ask yourself: "What the hell is going on? I feel glutened but why, I only smelled this spelt soup?!" and after waiting till the next day and observing, comparing with the symptoms you normally get from gluten and then concluding, you unfortunately KNOW, that you really reacted to a silly spelt soup by inhaling the vapor, because there where no other unsecure products and you are used to be very careful, for you it is "normal" to be probably far more careful than most other celiacs have to be - it's not as if someone is proud of being so super sensitive that he or she cannot eat this or that. It's just a huge burden in everyday life.

So I wanted to say, that I unfortunately have the same problem to enlighten it a bit more. I wish there would be more awareness under celiacs that the sensitivity levels are different from person to person what is a fact which you can even read in the FDA-paper where several studies are cited. https://www.fda.gov/downloads/Food/FoodScienceResearch/UCM264150.pdf

Please don't push aside the minorities of the celiac minority, 'cause you should all know how it is to explain celiac disease to other persons, who don't suffer from it. Than imagine explaining that you have celiac disease and get ill from inhaling gluten containing vapor (think the problem is not the inhaling itself but getting particles on the mucous membrane as a part of the digestion system) or eating packaged products (including "gluten free" ones), how hard this might be - even to yourself.

Maybe this study is interesting for some of the persons who have similar problems, it is also mentioned as "Fasano diet" in other posts. Unfortunately I got after the last months to that diet  without even knowing about it that time, was and is still try and error. I hope that it might get better after a few months as with most of the subjects in the study, but at least if it might not help myself than maybe others. https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40

Edited June 1, 2018 by Simi85

[cyclinglady]

@Simi85 -  I am sorry that you are so sensitive.  I am not going to dispute with you the odds of getting gluten by vapors (I stand with Kareng), but I will share that I thought I was not healing from celiac disease either.  It turns out that I have healed based on a recent repeat endoscopy.  That was the good news.  The bad news is that I have Chronic Autoimmune Gastritis.  It is my third autoimmune issue ? and is one that I can not control so easily with diet alone.  However, I am still just following the gluten-free diet and I think it is no longer flaring.  

Thank you for the link.  I did follow the “Fasano” diet prior to my repeat endoscopy and I think it helped.  Along the way, I discovered that avoiding non-processed foods is the better way to go in terms of healing and general good health.  Not everyone needs to follow this extra strict gluten-free diet, but it can help those struggling celiacs who are not healing.

I wish you well.  

[Simi85]

Hello again,

I think I was kind of emotional, it's just a frustrating topic for me and I just wished, I would be in the normal range of celiac disease and not in this strange position not being able to eat anything of the lots of products for celiacs. Didn't want to judge about anyone or so. I'm from germany and the only way I found out that there is definite a topic with extreme reactions to even small gluten traces is that I googled in english and found 2 or 3 American Websites that showed up the problems similar to mine. So I'm thankful to find out that it's not only my problem and that I might not be kind of mad or so. Sometimes there where / are doubts, but finally I begin to accept it and live with it.

In germany there is not even ONE information about extreme sensitivity and in every forum or celiac group on fb if you ask for something about having problems with this or that the only advice you get is that you might have another intolerance or disease on top of celiac, being maybe psychosomatic or that it is not possible to react to these traces under 20ppm. The most people in those groups even recommend to only look for the ingredients and that the mention of traces is to ignore. It seems that most celiacs even don't react to traces over 20ppm and they can eat at normal restaurants, etc. So I was somehow frustrated of being not understood and maybe brought it to this forum although there is even a subforum for "super" sensitive celiacs what is very cool. Without that I would not have known that there are other persons who might have problems with steam and that it is maybe not just imagination or accidental. Even if it's no real proof and I understand, that it is very hard to imagine, I though will try to avoid similar situations after that experience.

Cyclinglady, thank you for your answer. I'm sorry, that you have more than just that one autoimmune disease. I know how it is to feel like you cannot really influence something by yourself. Since my body reacted to smaller and smaller traces (started after a few months or half a year after going gluten free) I feel often like that. It is sometimes really scary that I might have problems with every packaged product I don't know. Even with many products I could eat at the beginning, sometimes from one week to another they didn't work anymore. I try to be happy about the things I can still eat and hope that it might not get worse or even better after a while, cause at a certain point it seems difficult to eat balanced enough to get the necessary nutrients.

Maybe you find a way how it feels best with that autoimmune gastritis, could there be things which are easier to handle and others more difficult? I'm now vegan since a few years but when I was still eating normal I experienced problems with animal fat like butter, cream and also pork meat, beef and duck. Have also a very sensitive stomach, also before being celiac. I don't have these problems with plant fat like oil or margarine, although it's also fat. But don't know if it could also help with autoimmune gastritis.

Yesterday I found out that in Australia the "gluten free" sign is only put on products which have no detectable gluten in them and I wished I could have these also here. Here in germany are only products available with the range till 20ppm and you never know, how much it is exactly.

Wish you well too.

[cyclinglady]

@Simi85

I wish the US was more stringent in their regulations with gluten free products like Australia.  I do think that there are celiacs that are super sensitive.  Just ask those with DH!  

I personally avoid as many processed foods as possible.  I also subscribe to the Gluten Free Watchdog who tests gluten-free products. This independent group (takes no advertising dollars from manufacturers), has found a few products that have exceeded 20ppm, but the vast majority are under 5ppm.  I think manufacturers are doing a better job of complying with the government guidelines.  

I am glad you found us!  

[apprehensiveengineer]

I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated. 

I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room.

Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen. 

I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.

[SevereCeliac]

On 6/8/2018 at 8:56 AM, Simi85 said:

Hello again,

I think I was kind of emotional, it's just a frustrating topic for me and I just wished, I would be in the normal range of celiac disease and not in this strange position not being able to eat anything of the lots of products for celiacs. Didn't want to judge about anyone or so. I'm from germany and the only way I found out that there is definite a topic with extreme reactions to even small gluten traces is that I googled in english and found 2 or 3 American Websites that showed up the problems similar to mine. So I'm thankful to find out that it's not only my problem and that I might not be kind of mad or so. Sometimes there where / are doubts, but finally I begin to accept it and live with it.

In germany there is not even ONE information about extreme sensitivity and in every forum or celiac group on fb if you ask for something about having problems with this or that the only advice you get is that you might have another intolerance or disease on top of celiac, being maybe psychosomatic or that it is not possible to react to these traces under 20ppm. The most people in those groups even recommend to only look for the ingredients and that the mention of traces is to ignore. It seems that most celiacs even don't react to traces over 20ppm and they can eat at normal restaurants, etc. So I was somehow frustrated of being not understood and maybe brought it to this forum although there is even a subforum for "super" sensitive celiacs what is very cool. Without that I would not have known that there are other persons who might have problems with steam and that it is maybe not just imagination or accidental. Even if it's no real proof and I understand, that it is very hard to imagine, I though will try to avoid similar situations after that experience.

Cyclinglady, thank you for your answer. I'm sorry, that you have more than just that one autoimmune disease. I know how it is to feel like you cannot really influence something by yourself. Since my body reacted to smaller and smaller traces (started after a few months or half a year after going gluten free) I feel often like that. It is sometimes really scary that I might have problems with every packaged product I don't know. Even with many products I could eat at the beginning, sometimes from one week to another they didn't work anymore. I try to be happy about the things I can still eat and hope that it might not get worse or even better after a while, cause at a certain point it seems difficult to eat balanced enough to get the necessary nutrients.

Maybe you find a way how it feels best with that autoimmune gastritis, could there be things which are easier to handle and others more difficult? I'm now vegan since a few years but when I was still eating normal I experienced problems with animal fat like butter, cream and also pork meat, beef and duck. Have also a very sensitive stomach, also before being celiac. I don't have these problems with plant fat like oil or margarine, although it's also fat. But don't know if it could also help with autoimmune gastritis.

Yesterday I found out that in Australia the "gluten free" sign is only put on products which have no detectable gluten in them and I wished I could have these also here. Here in germany are only products available with the range till 20ppm and you never know, how much it is exactly.

Wish you well too.

You are not alone i too have it severe beyond just common ingestion - system response to vapors, kicks in like lightning,  people at work had pizza delivered walked it past my office and I had to go home, people don’t get it I’m literally like the kid with a peanut allergy on a plane only no epi pen to help it’s not just gi instant head in the vice grip migraine brain fog joint pain stomach upset and vision issues - it’s a debilitating problem for me, the reaction to the slightest vapor is unreal, almost as bad as ingesting it thank you for posting your comments as it’s so isolating and frustrating to be so sensitive - the impact on the psyche is real I know your post is old but thankful to know I’m not alone in this level of reaction