Reactions To Cooking Gluten

[bjn555]

Hi gluten-free Community....Do any of you guys ever get sick from just the odors from cooking gluten? For the past week I have been glutened, but couldn't figure how, until I awoke with heart palpitations, tingling lips and extreme anxiety at 1am...to find husband and son cooking pizza and pasta so that I wouldn't "catch" them with gluten. I try to maintain a gluten-free house, since me and my kids have gluten issues and a grandson with autism on the diet. My son is in denial, because he enjoys his gluten binges, he has been cooking late at night after I go to sleep. My grandson had problems at school during this week as well. Please tell me I'm not imagining the symptoms. Some people just don't get it. When I confronted them, shaking with sweats, they just said "hey, calm down, it's just pasta". OMG!

[sbj]

I've never heard of this type of reaction before! I have heard of folks reacting to airborne flour, or reacting to crumbs in the kitchen, etc. but never to cooking odors.

That must really be tough on you because it means you can never eat out - anywhere! Or get near BBQs, probably can't even go to amusement parks or baseball games. Basically this means you can't go anywhere that food is prepared - and food is prepared everywhere! That's terrible. Maybe some sort of mask would help?

[CeliacMom2008]

My guess is that it's more likely that they aren't cleaning up enough and you, not knowing that gluten has been in your kitchen, don't know to be careful in your own kitchen. I know I'm more cautious at my parents' house than I am in my own. Outside of the dog food on the floor, I know in my house the pans, cookie sheets, strainer, countertop, towels, etc. are all safe; but at my parents' I know they still eat gluten when we're not there. So while there we use paper towels to dry our hands, food isn't set directly on the countertop, etc.

Good luck!!

[SGWhiskers]

I'm with you Celiac Mom. I seem to get nausia and a headache intermittently from hot gluten, broken crackers/cookies, and the flour isle at the grocery store. I'm recovering from a glutening from picking up a garbage bag with birdseed in it. Either that or the cookie the guy behind me broke open. I felt weird and looked behind me to see him picking at a big cookie. I would freak out if I had a reaction as severe as you and found out my hubby was cooking gluten.

I hope you feel well soon.

SGW

[Tallforagirl]

...I awoke with heart palpitations, tingling lips and extreme anxiety at 1am...to find husband and son cooking pizza and pasta so that I wouldn't "catch" them with gluten.

I don't see how you could have ingested the gluten when you weren't even in the same room. Perhaps it was from CC earlier in the day (if there are gluten eaters in the house this is always a possibility).

I think it's more likely that you are making yourself disproportionately anxious just by worrying that you may get glutened. Your mind can do funny things to you. It's possible your anxiety about being glutened could produce symptoms similar to the glutening reaction you fear. Odours can be very evocative, and the smell of the pasta and pizza cooking may have made you anxious to the point of panic.

"The American Psychiatric Association describes a panic attack as 'a discrete period of intense fear or discomfort that is accompanied by at least four of thirteen physical or cognitive symptoms'. The experience of less than four symptoms is known as a 'limited symptom attack'.

Symptoms include: palpitations, sweating, trembling or shaking, shortness of breath or smothering, feelings of choking, chest pain or discomfort, nausea or abdominal distress, dizziness or lightheadedness, pins and needles, diarrhoea, dry mouth, headache, derealisation or depersonalisation, and chills or hot flushes (APA 1994)."

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Note: I don't believe that having a panic attack could be classified as "imagining symptoms". The symptoms of a panic attack are very real.

[bjn555]

Thanks tallforagirl, I'll look into panic attacks, but still think this is gluten related. I'm still having effects, weakness, dizziness,sweats, etc., just not so severe. Inhaling is ingesting, so to speak. The aroma was as strong in the bedroom as the kitchen thanks to central heat. My daughter says molecules are released into the air, inhaled, and thus an allergic reaction. I have to cook ravioli for a church group (in the church kitchen) this weekend and I plan to be extra careful....thanks again!

[flagbabyds]

I agree that if they are cooking without you knowing, i'm assuming that they're not cleaning up as well as they could be. It's very possible for gluten reactions to last far more than just a day afterwards, I have had some lingering effects that last almost 2 weeks before, so it is possible that there has been somce CC in your kitchen and you are still suffering the effects of the CC that you got. Especially if you say that you are still getting the symptoms just they are a little less intense that would make sense that you have been glutened and now you just had a pretty severe attack and you really just gotta wait it out.

I hate CC gluten posioning, it's totally the worst cause you don't expect to be getting sick and it's quite frustrating.

--M

[Gemini]

Hi gluten-free Community....Do any of you guys ever get sick from just the odors from cooking gluten? For the past week I have been glutened, but couldn't figure how, until I awoke with heart palpitations, tingling lips and extreme anxiety at 1am...to find husband and son cooking pizza and pasta so that I wouldn't "catch" them with gluten. I try to maintain a gluten-free house, since me and my kids have gluten issues and a grandson with autism on the diet. My son is in denial, because he enjoys his gluten binges, he has been cooking late at night after I go to sleep. My grandson had problems at school during this week as well. Please tell me I'm not imagining the symptoms. Some people just don't get it. When I confronted them, shaking with sweats, they just said "hey, calm down, it's just pasta". OMG!

I almost have the same problem but for me, I believe it is purely psychosomatic and I has nothing to do with being glutened. You do have to ingest gluten for a true reaction to occur. My issue is when I get near a fast food joint, like McDonald's, when they are making the food and you can smell it everywhere in the vicinity of the restaurant. Dunkin' Donuts is also a problem. I stopped eating all fast food about 25 years ago, a long time before my diagnosis, because it made me so sick. Even after going gluten-free many years later and making a full recovery, if I smell fatty, gluteny foods, it turns my stomach. It's like getting hit by a skunk, that's how odorous it is to me. The only reaction I have is nausea, which disappears when the offending smell is removed.

I also have this problem when hubby toasts wheat bread....what a yucky smell. I am not a panic attack kind of person, have never been on any meds for depression or any kind of attacks so this is not the problem for me, although I do think for some it could be a trigger. Guilt by association is what I think....my body knows gluten is bad for me so my mind reacts as a protection mechanism. I always laugh about it because, for me, it's an association thing. Some people can trigger a memory from a smell alone so this could be the problem for you. If you have fear about being glutened, your mind might react this way and the body follows. It just goes to show you how important the mind-body connection really is.

[bjn555]

Sorry, Gemini, but I have to disagree that ingesting gluten is the only way to have a reaction.....my grandson was glutened playing with Play-dough, which contains wheat. It was absorbed through the pores of his skin. There would be no need for gluten-free detergents, or make-up or lotions, etc. I really don't worry about being glutened, but do have concerns for my grandson who has autism. When he gets glutoned he doesn't sleep, is violent, aggresive, all around uncontrollable and that lasts for about 3 days. Other than that, I don't think about it that much unless we are invited to dine places outside of my home, which has been gluten-free since 2006 (at least until this past week, LOL) . I've never had panic attacks either. You have given me something to think about, though. We can agree to disagree

[Gemini]

Sorry, Gemini, but I have to disagree that ingesting gluten is the only way to have a reaction.....my grandson was glutened playing with Play-dough, which contains wheat. It was absorbed through the pores of his skin. There would be no need for gluten-free detergents, or make-up or lotions, etc. I really don't worry about being glutened, but do have concerns for my grandson who has autism. When he gets glutoned he doesn't sleep, is violent, aggresive, all around uncontrollable and that lasts for about 3 days. Other than that, I don't think about it that much unless we are invited to dine places outside of my home, which has been gluten-free since 2006 (at least until this past week, LOL) . I've never had panic attacks either. You have given me something to think about, though. We can agree to disagree

It's perfectly OK to disagree but maybe I should make myself clearer. You cannot have a Celiac reaction to gluten unless it gets into your gut....that is proven medical fact. Gluten cannot be absorbed through the skin and I have done enough research and doctor questioning to know this is correct information. I also work in the science field. Having said that, I have no doubt your grandson was glutened from Play-dough but he most likely ingested it into his mouth...which would be almost a given with kids. They don't know any better and I'd like to see a kid who doesn't put his/her hands in their mouth or ingest Play-dough.

The reason there are gluten-free products is not because it can be absorbed but because there are many, many people with a topical allergy to wheat....which is a completely different horse than Celiac. If a person reacts with their skin after touching the offending agent, it's an allergy, not an intolerance and a person can have both. I think this is why people have a reaction and go crazy trying to figure it out.....they haven't learned the intricacies of CC and allergy vs. intolerance.

I have never bothered to use gluten-free topical products, although some of them are anyway, and I am ultra careful about not getting any into my mouth or nose. My blood work is awesome and I haven't been sick from a gluten problem in 4 years. It can be done but you have to know how CC occurs and the correct way to provoke a reaction so you can avoid one. There is a lot of confusion out there on this issue and that's why so many still have problems. I really am not trying to aggravate anyone but I have spent so much time getting this right and, from my personal experience, I have proven to myself that my information is correct.

I know people like to say that everyone is different but that reasoning doesn't fly. Medical facts are medical facts and if that where not correct, you would not be seeing medication that is formulated to be absorbed through the skin.....the science on that is good even if the diagnostic tools for Celiac are less than ideal.

I understand the autism thing also...I know people who have seen wonders happen with their autistic kids using the gluten-free diet. Also, isn't there gluten-free Play-dough? I thought someone posted something about that?

[sbj]

I know that Gemini is correct. Think about it. If we could all get glutened just by smelling certain cooking odors then we would all have to live in bubbles! If topical gluten bothers you then please avoid it, but you have to ingest gluten to prompt the celiac autoimmune reaction (that includes the DH skin response). The gluten 'molecule' is simply too large to be absorbed through the skin.

[CeliacMom2008]

I agree, Gemini. I would like to add that another possible need for gluten free lotions, soaps, etc. is that they can get ingested. Chapstick/lipstick being the most obvious, but even with lotions the chance for ingesting is there. You lotion up your hands then start making supper and touching all the food. Or your little one gets soap or shampoo in their mouth (my so used to LOVE to make bubble beards in the bathtub where his whole face was covered in bubblebath bubbles). So I think in those cases it isn't that you need the gluten-free products because of an allergy or the worry about it being absorbed, but more a problem with enough of it getting into your stomach through your mouth. But this would greatly vary by individual.

[bjn555]

Thanks....I'll let our DAN doctor know he's been wrong. Perhaps I'm on the wrong website. Can anyone recommend a forum where one can reach out for help and a sense of camaraderie rather than one that seems to be quite argumentative? I am reminded of all those professionals who gave me every diagnosis except the one that actually helped. By the way....hang in there SGWhiskers...stay away from the hot gluten and flour aisles at the grocery! You actually encouraged me. I'm not the only one!

[Lisa]

No one is being argumentative here, but rather being politely informative. We have a lot of people on this forum with a great deal of experience and I've been here for many years and there hasn't been a day when I haven't learned something. But, the most important thing that I have learned here, is to have an open mind.

This is a wonderful forum and the most supportive place I know.

[home-based-mom]

Hi gluten-free Community....Do any of you guys ever get sick from just the odors from cooking gluten? For the past week I have been glutened, but couldn't figure how, until I awoke with heart palpitations, tingling lips and extreme anxiety at 1am...to find husband and son cooking pizza and pasta so that I wouldn't "catch" them with gluten. I try to maintain a gluten-free house, since me and my kids have gluten issues and a grandson with autism on the diet. My son is in denial, because he enjoys his gluten binges, he has been cooking late at night after I go to sleep. My grandson had problems at school during this week as well. Please tell me I'm not imagining the symptoms. Some people just don't get it. When I confronted them, shaking with sweats, they just said "hey, calm down, it's just pasta". OMG!

Perhaps this article from How Stuff Works will clarify things for you.

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You should also show it to those who think they can dink around with substances that are poisonous to you and not have any negative consequences.

You are not imagining the symptoms and some people just don't get it. But they need to.

FWIW, a friend's son with a severe intolerance to casein went into anaphylactic shock because of an open package of cheese in an enclosed environment. He never even touched the stuff - but the fumes were in the air and that's all it took.

I read some time ago of a person with a severe shellfish allergy who actually died from inhaling the aroma of someone else's shrimp dinner.

Don't ever let anybody try to tell you that odors can't cause you problems!

Hope you get them straightened out soon!

[Lisa]

There is a difference ( it was clarified by Gemini) between an allergy and an autoimmune response.

[Jestgar]

Sorry, Gemini, but I have to disagree that ingesting gluten is the only way to have a reaction.....

I agree with this. If it makes you sick, it makes you sick, whatever the research.

[hollyres]

I am so sensitive to airborne wheat and gluten that I have reactions to boiling noodles and cooking bread. My gut swells (not in my head) and I get the all-too-familiar rush of strange feeling through my stomach, which I used to think was panic, but now only have when I am exposed to gluten. Maybe I have an allergy or severe sensitivity, but I KNOW this happens. In the beginning of my plight, I didn't even consider it a possibility because "experts" said it wasn't scientifically proven. Don't even get me started on the hard facts the scientific community has damaged me with over the last 40 years. I figured out that breathing it made me sick one night in the first six months of trying to perfect my diet. I was leaning over a stack of full pizza boxes, visiting with a group of women at my church. I stood there for a long time, smelling and breathing the dough fumes. Now, I didn't eat hardly anything that day, so I was sure it wasn't something I ate. I had a HUGE reaction. And then, the connection came. I am a purist with food & CC OCD who weighs 105 lbs. - I only eat whole foods, proven gluten free foods, or Enjoy Life because I have many food allergies - I eat pretty much the same thing every day. I do not "accidentally" get glutened, not with sponges, not with pans, not with shampoo - nothing. I began to see an emerging pattern. One day I was in the kitchen when my hubby was cooking pasta. I breathed it and had a similar reaction. This happened several times before I would believe it. Once I separated myself from cooking gluten, my whole body took a new turn toward better health.

My whole life people told me I'm crazy - I don't understand my own body - my ideas must be crazy because "science" hasn't proven it yet. Doctors also didn't diagnose my thyroid properly for 10 years, or my celiac for 20, or my food allergies as a child, or my mold issues, or my metal filling poisoning - which they still deny. They said every physical issue that has led me down this difficult path was in my head and said Prozac was the only answer. This has become my philosophy: if I believe something is making me sick, I don't look to anyone to validate it (I still feel guilty until I have been so fed up with symptoms that I take action). People don't understand, and they can only speak to their own experiences and what they have read. Feeling isolated and alone can make our health worse - so believe in yourself! I always wonder if seeking out people in the same difficult place I am in is the best place to turn - but not all the time - people who are also struggling can have a difficult time supporting sometimes. The wrong support can be worse, and then you feel like if they don't understand, who will? I will tell you - we are all different and our bodies react differently. Maybe you are like me and don't just have celiac, but an allergy or intolerance to wheat/gluten. If this is true, breathing it will cause issues.

When you look at back at the history of medicine - it has been wrong A LOT. There have been doctors who cut people's brains out because they were "crazy," promoted smoking as healthy, and many, many other intensely awful things. They promote drugs and vaccines that kill people, and then deny it until they can no longer get away with it. I don't mean to be a doctor basher - what would be do without them? I am just saying that they know what they read, which is a drop in the bucket of what is the truth. We know very little about the workings of the human body. The lucky ones are those who are willing to read and interpret their own symptoms, working diligently to live a healthy life through their own research and trusting their instincts. If it wasn't for my husband watching a tv show with Katie Couric, I would still be eating gluten and living in hell. If it wasn't for my cousin, I would never had continued to pursue a thyroid diagnosis. If it wasn't for my own strong will, I would have listened to every well-intentioned person out there who said I couldn't possibly know what was wrong with my own body. Now I am clear-minded, healthy (most of time), productive, and NOT on Prozac - thanks to people who believed me, people who didn't (because they made me fight), and my own belief in myself. Wow - that was a sermon! Sorry about that.

[bjn555]

Preach on, hollyres.....and God bless!

[Di-gfree]

The smell of wheat pasta, breads, and even oatmeal while it's cooking, turns my stomach, and can give me a headache. And, I open the windows, or avoid the room for awhile.

I cook wheat pasta for family members that are not celiac, and I make sure I wash my hands after touching it, and I don't put my face over the pot because the smell makes me sick. I don't know if it's the same as being glutened, I don't have scientific evidence on that. Whatever it is, it certainly makes me nauseated.

[Lovey25]

At this point, I would say anything is possible, and if you feel bad after being near gluten (though never touching or ingesting it) I would say this is valid. Of course I can't quote anything scientific to validate this, but our bodies and our instincts become very clear and honed when we omit allergens from our diet. We become VERY sensitive to those things.

An example for me (that's not in reference to gluten) is this: I can't eat anything fermented (alcohol, vinegar, yeast) because my (non-Celiac) autoimmune disease (Hashimoto's) allows for the overgrowth of bacteria in my system and ingesting fermented items only makes this worse. So, I'm very sensitive to alcohol. When someone cooks with alcohol in my kitchen, I get a tingling sensation if I'm in the vacinity of the room, just from the wafting scent. No joke. My neck and shoulders and head get all tingly and loose and I feel as if I've drank something. And that's being in the general vacinity -- I'm NOT talking about sniffing the food directly and letting it waft up my nostrils.

So, even though there's probably not a whole lot of info we have to validate this, take it seriously because you know your body even if everyone else is telling you it's not a problem or it's crazy!

[Mtndog]

Thanks tallforagirl, I'll look into panic attacks, but still think this is gluten related. I'm still having effects, weakness, dizziness,sweats, etc., just not so severe. Inhaling is ingesting, so to speak. The aroma was as strong in the bedroom as the kitchen thanks to central heat. My daughter says molecules are released into the air, inhaled, and thus an allergic reaction. I have to cook ravioli for a church group (in the church kitchen) this weekend and I plan to be extra careful....thanks again!

Sorry, Gemini, but I have to disagree that ingesting gluten is the only way to have a reaction.....my grandson was glutened playing with Play-dough, which contains wheat. It was absorbed through the pores of his skin. There would be no need for gluten-free detergents, or make-up or lotions, etc. I really don't worry about being glutened, but do have concerns for my grandson who has autism. When he gets glutoned he doesn't sleep, is violent, aggresive, all around uncontrollable and that lasts for about 3 days. Other than that, I don't think about it that much unless we are invited to dine places outside of my home, which has been gluten-free since 2006 (at least until this past week, LOL) . I've never had panic attacks either. You have given me something to think about, though. We can agree to disagree

BJN- after having read all the posts on this thread I'm thinking two things:

1. Definitely the CC issue

2. Kissing and touching- if you kiss your hubby and he has eaten gluten, you can get gluten. Especially if you're super-sensitive like some of us. Same thing with touching and you would be surprised how many times a day your fingers make their way to your mouth.

Tell them if they are going to do this, they MUST use their own pans.

I'm sorry you're going through this. It must be very stressful

[Gemini]

I agree, Gemini. I would like to add that another possible need for gluten free lotions, soaps, etc. is that they can get ingested. Chapstick/lipstick being the most obvious, but even with lotions the chance for ingesting is there. You lotion up your hands then start making supper and touching all the food. Or your little one gets soap or shampoo in their mouth (my so used to LOVE to make bubble beards in the bathtub where his whole face was covered in bubblebath bubbles). So I think in those cases it isn't that you need the gluten-free products because of an allergy or the worry about it being absorbed, but more a problem with enough of it getting into your stomach through your mouth. But this would greatly vary by individual.

I would agree 100% with this and thanks for adding that! I in no way am trying to get people upset or challenge them in any way but I believe that if you are striving to live as completely gluten-free a life as possible, it's critical to learn the correct way in which a reaction occurs. There is much misinformation out there and people have a tendency to believe what they hear, without checking out it's validity. I know there is a lot of fear out there and it can be hard for some to believe you will not be glutened by going into the same room as gluten but that's it in a nutshell. If you think you are having a reaction by smelling cooking gluten, it's impossible. I, too, have a problem with the smell but it isn't a true reaction. If you get violently ill from something, the memory is there and hard to dispell. I will always hate the smell of gluten bread in the toaster but it definitely is psychosomatic.....which isn't necessarily a bad thing!

[hollyres]

I would agree 100% with this and thanks for adding that! I in no way am trying to get people upset or challenge them in any way but I believe that if you are striving to live as completely gluten-free a life as possible, it's critical to learn the correct way in which a reaction occurs. There is much misinformation out there and people have a tendency to believe what they hear, without checking out it's validity. I know there is a lot of fear out there and it can be hard for some to believe you will not be glutened by going into the same room as gluten but that's it in a nutshell. If you think you are having a reaction by smelling cooking gluten, it's impossible. I, too, have a problem with the smell but it isn't a true reaction. If you get violently ill from something, the memory is there and hard to dispell. I will always hate the smell of gluten bread in the toaster but it definitely is psychosomatic.....which isn't necessarily a bad thing!

It is never helpful to say or imply something is psychosomatic - in my opinion. I had that done to me for years, and guess what...they were ALL wrong!!! If a person feels something is making them sick, and it happens repeatedly, then it is important to stop doing that thing - period. Do we always need to label it? By saying "psychosomatic," a person suggests the one suffering can control it through mental strength. This is not a slam, just a fact. I find people are more supportive when they say, "have you tried this or that..., but I believe you are suffering," not, "it's all in your head." It seems logical (maybe not scientific) that breathing gluten protein floating on the air through steam or heat (which lands in my mucus membranes in my sinuses or mouth) could be absorbed directly into my system and blood stream - the same way fish cooking swells my throat shut. All I know is that it happens. It happened when I didn't believe it could happen. We are all on our own unique journey of understanding - each at a different place in the road. All of our experiences are completely different - and realities. We need to honor that.

[Gemini]

It is never helpful to say or imply something is psychosomatic - in my opinion. I had that done to me for years, and guess what...they were ALL wrong!!! If a person feels something is making them sick, and it happens repeatedly, then it is important to stop doing that thing - period. Do we always need to label it? By saying "psychosomatic," a person suggests the one suffering can control it through mental strength. This is not a slam, just a fact. I find people are more supportive when they say, "have you tried this or that..., but I believe you are suffering," not, "it's all in your head." It seems logical (maybe not scientific) that breathing gluten protein floating on the air through steam or heat (which lands in my mucus membranes in my sinuses or mouth) could be absorbed directly into my system and blood stream - the same way fish cooking swells my throat shut. All I know is that it happens. It happened when I didn't believe it could happen. We are all on our own unique journey of understanding - each at a different place in the road. All of our experiences are completely different - and realities. We need to honor that.

It may not be helpful to you but if I don't have a problem with saying it's psychosomatic, when it applies to me also, you shouldn't be so defensive about it and think everyone is out to prove you wrong. You know, my story mirrors yours with all the issues you had growing up but I choose to react differently to it. I also was told once, only once, by a GI doctor that all my stomach and other health issues were caused by stress and that I should go see someone about it. Of course, I was mad about it but I was younger and had, by then, a chip on my shoulder. I could still be very angry about being misdiagnosed for 20 long years and having 4 autoimmune diseases to boot but life is too short....what's the point?

I am not saying that you are crazy because I have the exact same problem with some odors.In fact, I got nauseous trying to buy a couple of slices of regular pizza at Whole Foods for my husband once. Once I got to my car and breathed some fresh air outside, I was fine. It was not a true celiac disease reaction to wheat.....I really think for some, it's the body's way of defending itself. Celiacs have an extreme problem with wheat, barley and rye....an intolerance. By smelling strong smells of the offending foods,

it may indeed bother some and may be partly psychosomatic. I don't have a problem with that because I know I have Celiac and it's one of those quirky things that can happen. It isn't a Celiac reaction, though. The only way you would get a true reaction is if someone threw wheat flour into the air and you inhaled the cloud and got enough into your gut to cause a reaction. That I would believe but you cannot

redefine medicine to fit your criteria. Your reference to fish making your throat swell is an allergic reaction, not that of an intolerance. Maybe you have a wheat allergy to boot....that's entirely possible.