Dictating What Others Can Eat Around Me?

[plantime]

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.

[Muffy]

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.

[dilettantesteph]

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.

[T.H.]

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.

[Lisa]

A great discussion!

[weluvgators]

I have witnessed systemic inflammatory reactions in my children that have been traced back to airborne gluten exposure. Eliminating the sources of airborne gluten exposure eliminates the systemic chronic inflammatory response. There are lots of arguments for how my family may have "gluten allergy" in addition to "celiac" . . . but we are also a family that is stuck in the situation of being unable to qualify for "celiac" study because our "gluten/wheat allergy" is too bad for us to eat enough to do the necessary damage . . . like our respiratory, systemic and cutaneous reactions are too bad for us to push on through to the "celiac" diagnosis (we are genetically at high risk for celiac). I just don't think that my childrens' responses are psychological - how would they have ever "thought" that they would have this strange and unknown to us before it happened response to airborne gluten? And I am not talking about airborne flour - primarily smells and other modes of airborne transfer (not sure, but it seems that people must be ejecting gluten residue/particles when they are speaking during/after eating gluten based on our experiences).

Oddly enough my kids don't always "smell" it either - so that is not a prerequisite for them to have airborne reactions. My allergist was also nodding in sympathetic understanding when I explained how horribly and unexpectedly wrong my last attempt to go to one of my children's friend's pizza party. But, it often seems here that those of us with "allergy" and "celiac" are a definite minority. So our experiences may not apply to others' here, but I know I was looking high and low for the "celiacs" like us when we first started!! And the medical side of it is super frustrating too! The celiac people think our experiences must be the allergy, and the allergist people don't want to play much with us at all . . . and claim they just can't help us with the celiac! I think we fit into what I have seen referred to as gluten hypersensitivity, but they are still trying to figure out what is what when it comes to that! And they are looking at specific compounds that seem to affect some of us with wheat allergy issues (like the omega 5 gliadin part of gluten). There are also the volatile compounds that may be an issue for some, but there just doesn't seem to be much research into that yet.

And, Muffy, a mask may help you cope with the airborne exposures better as you try and get yourself healed more. I have doctors that tell us that we should not be "so reactive", but that hasn't made our symptoms go away. I have other doctors that tell me our experiences match their clinical experience, and they continue working with us to try and help us cope better, but it has been a long, slow struggle with no/little progress. Identifying and eliminating the sources of gluten exposure have been the most effective treatment for us time and time again.

Good luck with it all!

[Lisa]

Among other things in your discussion, I find several things particularly disturbing to those newly entering the gluten free world.

"And I am not talking about airborne flour - primarily smells and other modes of airborne transfer (not sure, but it seems that people must be ejecting gluten residue/particles when they are speaking during/after eating gluten based on our experiences)."

Why do you have the need to frighten people like this. This is irresponsible. Find the science behind you outrageous claims (ie: Board Rule #5)

But, I think this topic has drifted from the original post....time to get back to that.

[Cypressmyst]

Outrageous claims?

Claims...

Lovely...

...This is a place for support dear Lisa and the airborne gluten discussion is absolutely on par with the original topic. I know the implications of this information are frightening but what would you have us do? Bury our heads in the sand?

Just because you are afraid and don't like what you are reading does not invalidate our experiences. And I don't need a test or a medical study to tell me I'm having a gluten reaction. My body is the ultimate test and like clockwork when I am talked to by someone with beer breath, or in the vicinity of frying foods I get headaches, brain fog, and all of my gluten symptoms appear. Also remember I had this same reaction in the flour isle at the store when I didn't realize what isle I was in until after the headache started.

Obviously I am not alone in this. You do us and everyone else with a gluten issue a disservice by ignoring what we are saying. Maybe you aren't as sensitive, maybe you are and just attribute your tiredness, acheyness, headaches etc... to something else, but to dismiss this outright is dangerous. That is exactly how people stay unnecessarily sick, by believing things that are not true, like they can't be glutened by smelling baking bread so there must be some other reason they are feeling so miserable.

There are some 60 different compounds in wheat that could be causing a problem. Gliadin is only one. There are Alpha, Omega, and Beta Gliadins, Wheat germ aglutenine and Gludiomorphines to name a few. Not everyone who has a gluten issue or Celiac has anti-gliadin anti-bodies, some folks react to these other peptides in exactly the same way though. Medical science is just starting to explore these avenues.

Open Original Shared Link

So maybe I and others have reactions to one of these other peptides that is airborne? I don't know, but Dr. O'Bryan states very clearly in the above interview that the inflammatory cascade can be triggered simply by smelling it, for those of you who need to hear it from a Doctor. He is at the cutting edge of gluten sensitivity research.

If you are interested in these 60 other peptides he goes into them a little more in the interview as well.

[dilettantesteph]

Among other things in your discussion, I find several things particularly disturbing to those newly entering the gluten free world.

I can understand where you are coming from. The needs of the newly diagnosed and less sensitive celiacs are very different from the needs of the super sensitive celiacs. I know that early on after my diagnosis I realized that I was more sensitive than others and I couldn't get any information about it. I stayed sick for a long time while I figured that all out. I am really pleased about the changes that have happened here since then. There is a lot more acknowledgement of the needs of the super sensitive celiac/gluten intolerant. There is a lot more information available for them to use to get well. I can see how someone newly diagnosed might give the whole thing up if they think that all celiacs have to go to the crazy extremes that we super sensitives have to go to. I don't know how that should be addressed. One thing that doesn't help is to put down people trying to share information about their experiences.

[Jestgar]

So maybe I and others have reactions to one of these other peptides that is airborne? I don't know, but Dr. O'Bryan states very clearly in the above interview that the inflammatory cascade can be triggered simply by smelling it, for those of you who need to hear it from a Doctor. He is at the cutting edge of gluten sensitivity research.

If you are interested in these 60 other peptides he goes into them a little more in the interview as well.

I'm with Lisa on this one. Peptides aren't airborne - molecules are. For a peptide to be airborne, you will have actual particulate matter, and smelling it is uncommon. You smell molecules, not proteins.

Also, keep in mind that Dr O'Bryan is a chiropractor, not an immunologist.

[dilettantesteph]

I'm with Lisa on this one. Peptides aren't airborne - molecules are. For a peptide to be airborne, you will have actual particulate matter, and smelling it is uncommon. You smell molecules, not proteins.

Also, keep in mind that Dr O'Bryan is a chiropractor, not an immunologist.

First off, a peptide is a molecule. Open Original Shared Link

So is a protein. Open Original Shared Link

Also, peptides can be odorants.

This is a research paper about the odorant uroguanylin: Open Original Shared Link

This is the Wiki page which says that it is a 16 amino acid peptide: Open Original Shared Link

It is kind of amazing that a 16 amino acid peptide would be in the air for us to breathe.

[Jestgar]

First off, a peptide is a molecule. Open Original Shared Link

So is a protein. Open Original Shared Link

Yes, but it's one of them. A molecule is the smallest particle of a substance that retains the chemical and physical properties of the substance and is composed of two or more atoms; a group of like or different atoms held together by chemical forces. Hard to activate the immune system through your nose with a single molecule, or even a group of single molecules.

I should have been more clear. I'm used to thinking of proteins and peptides as more than a single entity, and using the terminology "a molecule of protein" which is different, in practical terms, from a protein.

[Gemini]

Outrageous claims?

Claims...

Lovely...

...This is a place for support dear Lisa and the airborne gluten discussion is absolutely on par with the original topic. I know the implications of this information are frightening but what would you have us do? Bury our heads in the sand?

Just because you are afraid and don't like what you are reading does not invalidate our experiences. And I don't need a test or a medical study to tell me I'm having a gluten reaction. My body is the ultimate test and like clockwork when I am talked to by someone with beer breath, or in the vicinity of frying foods I get headaches, brain fog, and all of my gluten symptoms appear. Also remember I had this same reaction in the flour isle at the store when I didn't realize what isle I was in until after the headache started.

Obviously I am not alone in this. You do us and everyone else with a gluten issue a disservice by ignoring what we are saying. Maybe you aren't as sensitive, maybe you are and just attribute your tiredness, acheyness, headaches etc... to something else, but to dismiss this outright is dangerous. That is exactly how people stay unnecessarily sick, by believing things that are not true, like they can't be glutened by smelling baking bread so there must be some other reason they are feeling so miserable.

There are some 60 different compounds in wheat that could be causing a problem. Gliadin is only one. There are Alpha, Omega, and Beta Gliadins, Wheat germ aglutenine and Gludiomorphines to name a few. Not everyone who has a gluten issue or Celiac has anti-gliadin anti-bodies, some folks react to these other peptides in exactly the same way though. Medical science is just starting to explore these avenues.

Open Original Shared Link

So maybe I and others have reactions to one of these other peptides that is airborne? I don't know, but Dr. O'Bryan states very clearly in the above interview that the inflammatory cascade can be triggered simply by smelling it, for those of you who need to hear it from a Doctor. He is at the cutting edge of gluten sensitivity research.

If you are interested in these 60 other peptides he goes into them a little more in the interview as well.

Lisa is absolutely correct in this and none of what you claim is based in any up to date science anywhere. I am a super sensitive Celiac also but spent a lot of time learning about the disease process of Celiac Disease so I would know where I had to be careful and what was overkill. I too have a reaction when exposed to smells but it is not a reaction that initiates the autoimmune response and you will not have intestinal damage as a result. Ditto for neuro issues. As I have stated, it is more in line with a Pavlovian response and I cannot for the life of me figure out why you are so offended by that idea.

I am not disputing your reactions to smells because I have been there but I also keep things in perspective. Celiacs do not have to live in a bubble....they just need to learn what works for them and what will cause a true problem. I tend to avoid stinky places that bother me like a donut shop or fast food joints and, as I never eat anything from these places, that's easy to do. The one thing I don't do is have a fit over what other people eat in my presence because, unless the are blowing wheat crumbs into my face or down my throat, it isn't a problem. If you choose to go over the top with your food issues, that's fine and I hope it works for you but telling people that supposed airborne gluten is a danger is just plain ridiculous. Gluten is not airborne in an odor.

[weluvgators]

Why do you have the need to frighten people like this. This is irresponsible. Find the science behind you outrageous claims (ie: Board Rule #5)

I am sorry if I have offended you and others by sharing my family's experiences with gluten intolerance, and I am sad that you feel I have been irresponsible. This has been a very difficult and exhausting journey for our family with many medical consultations, a couple of hospitalizations, and an enormous amount of work involved to achieve, maintain, and improve our health and safety.

I tried to put several notations of dislaimers in my post

[Jestgar]

I tried to put several notations of dislaimers in my post

[Lisa]

I was a bit abrupt and you did state your "experience". I do apologize for that.

But it baffles me as to how gluten response can be triggered by smell, or standing next to someone who is eating gluten. I have been here a long time, and I have read a lot of stories and have never seen a substantiated claim that supports that theory.

It's just not something that the members here need to worry about, in my humble opinion.

[Jestgar]

But it baffles me as to how gluten response can be triggered by smell, or standing next to someone who is eating gluten. I have been here a long time, and I have read a lot of stories and have never seen a substantiated claim that supports that theory.

I dunno about standing next to someone, but I read 'gators' post after sitting across from someone at lunch and watching bits of food spray from his mouth as he talked. Not a ton of spray, but more than enough to horrify me. This is what I envisioned.

[Lisa]

I dunno about standing next to someone, but I read 'gators' post after sitting across from someone at lunch and watching bits of food spray from his mouth as he talked. Not a ton of spray, but more than enough to horrify me. This is what I envisioned.

Certainly a situation to avoid, gluten sensitive or not!

[plantime]

Jestgar has my proxy on the science part of this issue. Chiropractors are not experts regarding celiac disease, any more than I am.

[winter.skadi]

I guess what upsets me about this is that at the base of this is a person who is obviously uber sensitive, and suddenly this has devolved into a thread of "is it just in your head." Maybe the symptoms that are caused by airborn gluten don't start the whole auto-immune response. Maybe they do. Really there isn't a test to figure it out, and I doubt anyone who is suffering for a day or more after such exposure really cares if there is science to back up what their body is telling them is the truth. Do the implications of such things scare me? yes. Do I think it is wise to bury my head in the sand if I don't think it applies, or try to convince someone else what they are experiencing isn't real? no. Do I think it applies to me?? Well that is a very interesting question, and an answer that would have been different Tuesday of this week.

I have been gluten-free for 4 months.My adrenals are also tanking, and I have had a variety of gut/allergy/neurological pain symptoms for as long back as I can remember. Going gluten-free, and giving my adrenals some much needed support has been like a miracle in my life. I have been "glutened" a couple times in the last 4 months by ingesting something I checked into first... and my information was wrong. I had some very specific symptoms that laid me out for 2 days. not fun.

I had never, that I knew of, reacted to anything in the air. I *have* had issues with body care products, and I know there is a whole debate about that too... but I don't really care what others' opinion is on that as I know what happened to me.

Anyho... I went out to a restaurant (olive garden-the gluten den)... I had no food, no drink, I didn't even unwrap the silverware. I sat and talked with friends and hung out.

Then I paid for it for 2 days with my all too familiar symptoms...

It could be a cross reactivity, it could be an airborn issue, I don't know yet. I am not willing to rule it out because someone says science doesn't support that yet.

I know that whether or not this kicks off the whole auto-immune cascade, the symptoms that kick my rear-end for 2 days after I am AROUND it, mean that it isn't worth it to me.

[Cypressmyst]

Dr. O'Bryan is not just a Chiropractor. He is at the cutting edge of Gluten Sensitivity research and is a leading expert in the field.

The following comes from this site: https://www.celiac.com/authors/40/Tom-O%26%23039%3BBryan

Dr. Tom O

[kayo]

I experienced it as well and I'm not even what I would consider very sensitive. It was early on in the diet, maybe just a few months, we walked into a restaurant and passed their pizza making area where they make the dough, the pizzas/calzones and bake them in the open fireplace ovens. I got so dizzy and light headed and woozy. I couldn't concentrate. I felt drunk or tipsy. All I wanted to do was lay down. The feeling passed after about 10-15 minutes. I have been to the same restaurant since and have not had any reactions. It was the oddest thing.