Airbourne Gluten

[Voltage]

Hello. I was wondering if anyone else freaks out when they walk down the bread aisles in a store. I wear a covid mask just in case or am i being silly.

[trents]

If I was going to freak out when walking down the bread aisle at the supermarket it would be because the smell of sour dough makes me crave real bread.

[Scott Adams]

Many larger supermarkets here in California now include their own in-house bakeries. Our local Safeway has one. I can often smell wheat bread baking when I'm shopping, but have never felt or gotten ill from this. There have been people on this forum who claim to get ill nearly instantly in such situations, but I do not believe that there is a scientific basis for such reactions, and they could be psychosomatic. I've never seen research done on the idea.

[knitty kitty]

Oh, yes, I can't walk down the bread aisle.  My eyes sting, my nose starts running, I get queasy.  

The nose and eyes drain into the digestive system.  Digestion starts in the mouth.  

The reason you smell something is because molecules of it is floating in the air and landing on your smell receptors in your nose.  

As you wish....

NOTE:

This is about ALLERGY, but the gluten is big enough for an immune response.

"IgE mediated gluten allergy can be induced either by gluten as an in- gredient in foods or wheat prolamines present in the air."

 

Gluten--mechanisms of intolerance, symptoms and treatment possibilities of IgE-related allergy for gluten in the light of actual clinical and immunological studies

https://pubmed.ncbi.nlm.nih.gov/27024953/

[T burd]

14 hours ago, Kathy321 said:

Hello. I was wondering if anyone else freaks out when they walk down the bread aisles in a store. I wear a covid mask just in case or am i being silly.

I freak out on flour/ baking aisle sometimes. I wish regular four was bagged in a plastic package. There have been MANY times flour bags have broken and it flies in the air. Particles are fine and land all over the store as dust. And I see it all over the ground.
When I was first diagnosed and my husband was cooking Mac n cheese, before my whole house went gluten free. I naively stood by the stove to talk and some steam got in my mouth. I felt nauseous immediately and almost gaged. Boiling captures large enough particles and throws them in the air, but I do not think aroma is the same. I never get sick on bread aisle. I get sick if I don’t wash my hands after shopping. 

[Kate333]

Honestly, when I go grocery shopping, I am far more worried about inhaling airborne Covid (or cold or flu) particles/droplets than airborne G residue or particles.  That said, I do tend to avoid packaged bread aisles, mostly because I SOOOO MISS the smell--and taste--of pumpernickel and cinnamon raisin bread and seeing those items (all while knowing I can no longer have them FOR THE REST OF MY LIFE) really depresses me....😭.  I avoid the bakery section in grocery stores and stand-alone bakeries for the same reasons: really miss fresh freshly baked blueberry muffins, banana bread, and cornbread.  Haven't set foot in a Starbucks, Panera Bread, or Dunkin Donuts in 3 solid years, since I was diagnosed.  Sigh.... 

[trents]

Let's remember that the bread stacked in supermarket bread isles is wrapped so that any gluten is contained. Furthermore, when I think about this, an immediate reaction to airborne gluten or gluten fumes or whatever people think they are inhaling when walking down the bread isle of a supermarket can't possibly be a celiac reaction. Even if, in this situation, gluten particles are finding their way into the mucosa of the airway, it would take awhile for it to get to the gut. I just don't see how these kinds of immediate reactions could be a celiac response. It certainly could be an allergic response or a psychosomatic response, however.

Edited October 5, 2022 by trents

[T burd]

3 hours ago, Kate333 said:

Honestly, when I go grocery shopping, I am far more worried about inhaling airborne Covid (or cold or flu) particles/droplets than airborne G residue or particles.  That said, I do tend to avoid packaged bread aisles, mostly because I SOOOO MISS the smell--and taste--of pumpernickel and cinnamon raisin bread and seeing those items (all while knowing I can no longer have them FOR THE REST OF MY LIFE) really depresses me....😭.  I avoid the bakery section in grocery stores and stand-alone bakeries for the same reasons: really miss fresh freshly baked blueberry muffins, banana bread, and cornbread.  Haven't set foot in a Starbucks, Panera Bread, or Dunkin Donuts in 3 solid years, since I was diagnosed.  Sigh.... 

have you not had gluten-free cinnamon raisin bread? I know Trader Joe’s used to have it, but hear they don’t now. canyon bake house (I had in UT, but not FL) little northern bake house has it at sprouts. But there is another brand online… are you in Europe? 

[Voltage]

On 10/5/2022 at 10:54 PM, trents said:

Let's remember that the bread stacked in supermarket bread isles is wrapped so that any gluten is contained. Furthermore, when I think about this, an immediate reaction to airborne gluten or gluten fumes or whatever people think they are inhaling when walking down the bread isle of a supermarket can't possibly be a celiac reaction. Even if, in this situation, gluten particles are finding their way into the mucosa of the airway, it would take awhile for it to get to the gut. I just don't see how these kinds of immediate reactions could be a celiac response. It certainly could be an allergic response or a psychosomatic response, however.

I would have thought that wearing a mask would prevent you from getting ill regardless. If your mask gets wet in the rain does it still offer the same protection.

[Grlybrainiac]

Not quite the bread aisle, but I 1000% get glutened from the air. I’ve been in 3 stores in the past maybe 2 months that smelled strongly of a fragrance, and I almost immediately started getting my “gluten” gas (aka my first sign that I’ve been glutened, or dairy-ed). It was in an Ulta, a Whole Foods, & a Joann Fabrics (today). I also get sick standing in a room with people eating pizza, & I get sick when I’m standing next to something like a food truck where I guess they are venting out the air from inside?? I’ve gotten sick a few times from that. Also, my COVID mask has not helped 🥹 I was double-masked each time this happened (except for the pizza parties and one of the food truck incidents, they were before COVID). I do tend to hold my breath walking through the bread aisle even though it’s probably fine 😂 it just scares me to smell it. 
 

I’m also a super sensitive celiac. I’ve gotten sick from handling paperwork that I’m assuming someone who had eaten gluten or dairy had touched. 

[Grlybrainiac]

On 10/5/2022 at 5:54 PM, trents said:

Let's remember that the bread stacked in supermarket bread isles is wrapped so that any gluten is contained. Furthermore, when I think about this, an immediate reaction to airborne gluten or gluten fumes or whatever people think they are inhaling when walking down the bread isle of a supermarket can't possibly be a celiac reaction. Even if, in this situation, gluten particles are finding their way into the mucosa of the airway, it would take awhile for it to get to the gut. I just don't see how these kinds of immediate reactions could be a celiac response. It certainly could be an allergic response or a psychosomatic response, however.

I’ve actually gotten glutened from simply putting something in my mouth, I hadn’t even swallowed it, it shocked me honestly. Perhaps I had actually swallowed a bit without noticing? I also get glutened from the air without even thinking about gluten being in the air. I’m no scientist, and I haven’t researched this, but maybe some people’s bodies are hyper vigilant when it comes to “protecting” us from gluten?? I was also recently glutened from having a lotion put on my hand that I didn’t realize had gluten in it (the store clerk put it on before I could say no). I didn’t even touch my mouth or face since I was wearing a mask, but by the time I was walking out the store maybe 10-15 minutes later, I started getting my “glutened” gassy, hot flashes, and body aches. I looked up the ingredients and some of them involved wheat as part of a fermentation process. Again, I haven’t really researched this and I’m not a scientist, but it’s something I’ve experienced! 

[trents]

To get a true celiac reaction, gluten must come in contact with the villi of the small bowel. It is an enteric phenomenon.

[knitty kitty]

@trents,

That may be true for the initial trigger for Celiac Disease, but in people already with Celiac Disease, any exposure can stimulate the immune cells already trained to attack gluten to go into high gear again.  This is called histamine intolerance and mast cell activation syndrome.  

 

Edited October 12, 2022 by knitty kitty
Typo

[trents]

29 minutes ago, knitty kitty said:

@trents,

That may be true for the initial trigger for Celiac Disease, but in people already with Celiac Disease, any exposure can stimulate the immune cells already trained to attract gluten to go into high gear again.  This is called histamine intolerance and mast cell activation syndrome.  

 

"attract gluten"?

[knitty kitty]

Hmmm, misspelled...auto-speller....should be...

Attack

Thanks

[T burd]

8 hours ago, trents said:

To get a true celiac reaction, gluten must come in contact with the villi of the small bowel. It is an enteric phenomenon.

I don’t think that’s necessarily true…
 

https://clpmag.com/disease-states/allergy-autoimmune/saliva-test-developed-for-diagnosing-celiac-disease/

[trents]

2 hours ago, T burd said:

I don’t think that’s necessarily true…
 

https://clpmag.com/disease-states/allergy-autoimmune/saliva-test-developed-for-diagnosing-celiac-disease/

But the symptomatic celiac reaction is what we're talking about, not the detection of antibodies in some other system of the body. The antibodies themselves are produced at the site of the inflammation which for celiacs would either be in the small bowel or for those with DH, in the skin.

[knitty kitty]

Yes, the antibodies originate in the small intestine, but the antibodies circulate in the blood stream.  The antibodies will bind to gluten (or cells in our bodies that resemble gluten) raising an "Intruder Alert".  Immune cells like mast cells react to this alarm wherever they may be located in the body, intestines or nasal passages, lungs, throat, etc..  

Antibodies tend to aggregate in the skin attacking certain skin cells in DH.  

The cells that produce the anti-gluten antibodies live for about two years.  

[Maria Deal]

On 10/11/2022 at 9:38 PM, Grlybrainiac said:

Not quite the bread aisle, but I 1000% get glutened from the air. I’ve been in 3 stores in the past maybe 2 months that smelled strongly of a fragrance, and I almost immediately started getting my “gluten” gas (aka my first sign that I’ve been glutened, or dairy-ed). It was in an Ulta, a Whole Foods, & a Joann Fabrics (today). I also get sick standing in a room with people eating pizza, & I get sick when I’m standing next to something like a food truck where I guess they are venting out the air from inside?? I’ve gotten sick a few times from that. Also, my COVID mask has not helped 🥹 I was double-masked each time this happened (except for the pizza parties and one of the food truck incidents, they were before COVID). I do tend to hold my breath walking through the bread aisle even though it’s probably fine 😂 it just scares me to smell it. 
 

I’m also a super sensitive celiac. I’ve gotten sick from handling paperwork that I’m assuming someone who had eaten gluten or dairy had touched. 

Me too. It is no quality of life.

It has happened to me multiple times in grocery store (first few times I remembered I did smell the Bakery even through my mask), at restaurants, and even at a meeting where people carried food in at lunch and aroma was strong (I thought nothing of it but got sick afterwards). Most of the grocery trips I thought it was flour on the conveyor belt getting onto my food, or into tiny cracks/breaks in my dry skin, but we are very careful wiping everything down as it comes into house… packages & mail included.
I have been tested twice, Not allergic to wheat, just a sensitive Celiac, and by the way I have always had a very superior sense of smell. I wonder if that’s why? Probably not. Flour just floats & bakery aroma or even 1 time frying chicken at grocery got me sick (immediate migraine, then I got sick later).

So far even my Functional  Medicine doctor has No Clue how to help. 1 FM doc said it could be an Aldehyde sensitivity, but no one near me knows anything on how to move forward with that. 🤷🏻‍♀️ So I stay home or in my car, go no where. ☹️😭👎🏼 I was even thinking Mast Cell Activation or SIBO could be additional things keeping my body & immune system “haywire”. 

This is why I came here & joined. I need help & support like the rest of you. ❤️I am still getting glutened from my hubby sometimes, or from outside sources, and my life is miserable & most doctors know nothing. It is a lonely life staying home to stay safe. Regular people do not understand or believe. It’s Not psychological. My hubby figured it out that he was getting me sick when he ate gluten… or if we forget to wipe something down or I eat something new & get sick. I have experience, raised a child with 9 food allergies, so I know what cross contamination is and how to avoid it & I de-sensitized most of her allergies (so no hate please). 🤓👏🏼👍🏼

[Ida Oldford]

On 10/11/2022 at 10:38 PM, Grlybrainiac said:

Not quite the bread aisle, but I 1000% get glutened from the air. I’ve been in 3 stores in the past maybe 2 months that smelled strongly of a fragrance, and I almost immediately started getting my “gluten” gas (aka my first sign that I’ve been glutened, or dairy-ed). It was in an Ulta, a Whole Foods, & a Joann Fabrics (today). I also get sick standing in a room with people eating pizza, & I get sick when I’m standing next to something like a food truck where I guess they are venting out the air from inside?? I’ve gotten sick a few times from that. Also, my COVID mask has not helped 🥹 I was double-masked each time this happened (except for the pizza parties and one of the food truck incidents, they were before COVID). I do tend to hold my breath walking through the bread aisle even though it’s probably fine 😂 it just scares me to smell it. 
 

I’m also a super sensitive celiac. I’ve gotten sick from handling paperwork that I’m assuming someone who had eaten gluten or dairy had touched. 

 

8 hours ago, Maria Deal said:

Me too. It is no quality of life.

It has happened to me multiple times in grocery store (first few times I remembered I did smell the Bakery even through my mask), at restaurants, and even at a meeting where people carried food in at lunch and aroma was strong (I thought nothing of it but got sick afterwards). Most of the grocery trips I thought it was flour on the conveyor belt getting onto my food, or into tiny cracks/breaks in my dry skin, but we are very careful wiping everything down as it comes into house… packages & mail included.
I have been tested twice, Not allergic to wheat, just a sensitive Celiac, and by the way I have always had a very superior sense of smell. I wonder if that’s why? Probably not. Flour just floats & bakery aroma or even 1 time frying chicken at grocery got me sick (immediate migraine, then I got sick later).

So far even my Functional  Medicine doctor has No Clue how to help. 1 FM doc said it could be an Aldehyde sensitivity, but no one near me knows anything on how to move forward with that. 🤷🏻‍♀️ So I stay home or in my car, go no where. ☹️😭👎🏼 I was even thinking Mast Cell Activation or SIBO could be additional things keeping my body & immune system “haywire”. 

This is why I came here & joined. I need help & support like the rest of you. ❤️I am still getting glutened from my hubby sometimes, or from outside sources, and my life is miserable & most doctors know nothing. It is a lonely life staying home to stay safe. Regular people do not understand or believe. It’s Not psychological. My hubby figured it out that he was getting me sick when he ate gluten… or if we forget to wipe something down or I eat something new & get sick. I have experience, raised a child with 9 food allergies, so I know what cross contamination is and how to avoid it & I de-sensitized most of her allergies (so no hate please). 🤓👏🏼👍🏼

Definitely the same reactions as you. I honestly thought I was losing it. I have chemical sensitivities as well. Same thing happens when I am exposed to scents in local stores. So much useful info on this site. So happy I found it.

[T burd]

2 hours ago, Ida Oldford said:

 

Definitely the same reactions as you. I honestly thought I was losing it. I have chemical sensitivities as well. Same thing happens when I am exposed to scents in local stores. So much useful info on this site. So happy I found it.

I get sick if I smell the smell of cigarettes on people. Perfumes in some soaps also. Do you guys take daily probiotics? I was more sensitive before I did that. 

[Ida Oldford]

No I don’t take probiotics. Willing to try if it helps. I have severe intolerance for perfumes ,soap any cleaning products that aren’t fragrance free. Really difficult having any social life😞

[Wheatwacked]

13 hours ago, Maria Deal said:

Functional  Medicine doctor has No Clue how to help

The following is a long winded way of suggesting to increase your intake of vitamin D, vitamin B6, vitamin B12, Choline and Folate. It may help. It won't hurt.

 It looks like the name of your symptoms is MCS Multiple Chemical Sensitivities.  Very little research has been done. The medical industry simply recommends avoidance. As you said No Clue.  In at least on study (see below) high homocysteine levels, the toxic waste of protein metabolism, has been associated with MCS.  B12 and folate are only one path for methylization of homocysteine. There are two others: Vitamin B6 and Choline. Thats how important recycling homocysteine is. There are 3 independant systems.  Homocysteine is considered an independent risk factor for vascular disease so if yours is high you want to work on it anyway.  Plasma folate and total homocysteine levels are associated with the risk of myocardial infarction, independently of each other and of renal function. 

There is no test for Choline and it is mostly ignored when discussing homocysteine and neural tube defects and gall bladder (fat digestion). People on intravenous feeding get non alcoholic fatty liver disease unless they get choline added. Less than 10% of westerners eat the minimum recommended intake, mostly because we've been told to cut back on liver, beef  eggs and milk. The RDA for choline is 4 large eggs or 15 ounces of lean steak or 10 cups of broccoli. There is a blood plasma test for Homocysteine but not often done.

If you can, get tested for vitamin D, B12, B6 and Homocysteine to get base levels and see if they are normal.

Vitamin D modulates the autoimmune system at high enough levels 70 to 80 ng/ml is the natural level. The "normal" we are told (>29 mg/dl) is woefully lacking. Enough to protect from rickets. We evolved as outdoors people but with the industrial revolution and factory and office work we don't get enough vitamin D. We in the temporate zones only get enough ultraviolet in the summer and even then we use protective clothing and SPFs, causing a scary number of people to have low or defficient D, which is a common finding in autoimmune diseases and even fertility.

There is no limit to the amount of B6 we can take. The safe upper limit of choline is 3500 mg or the equivelant of 28 eggs. Folate is not fortified in most gluten free processed food so Celiacs likely don't get enough, even after healing.

Quote

Nevertheless, a case-control study aiming to examine potential biological mechanisms underlying MCS in 223 women with MCS versus 194 controls did not find deficiencies in vitamin B12 tissue levels or folate levels, but reported case-control differences for vitamin B6 and homocysteine. Although some clinicians have previously described a trend of low serum vitamin B6 levels in six out of 10 MCS patients, this study did not support this conclusion.   Case-control study of multiple chemical sensitivity, comparing haematology, biochemistry, vitamins and serum volatile organic compound measures

 

 

[Maria Deal]

56 minutes ago, Wheatwacked said:

The following is a long winded way of suggesting to increase your intake of vitamin D, vitamin B6, vitamin B12, Choline and Folate. It may help. It won't hurt.

 It looks like the name of your symptoms is MCS Multiple Chemical Sensitivities.  Very little research has been done. The medical industry simply recommends avoidance. As you said No Clue.  In at least on study (see below) high homocysteine levels, the toxic waste of protein metabolism, has been associated with MCS.  B12 and folate are only one path for methylization of homocysteine. There are two others: Vitamin B6 and Choline. Thats how important recycling homocysteine is. There are 3 independant systems.  Homocysteine is considered an independent risk factor for vascular disease so if yours is high you want to work on it anyway.  Plasma folate and total homocysteine levels are associated with the risk of myocardial infarction, independently of each other and of renal function. 

There is no test for Choline and it is mostly ignored when discussing homocysteine and neural tube defects and gall bladder (fat digestion). People on intravenous feeding get non alcoholic fatty liver disease unless they get choline added. Less than 10% of westerners eat the minimum recommended intake, mostly because we've been told to cut back on liver, beef  eggs and milk. The RDA for choline is 4 large eggs or 15 ounces of lean steak or 10 cups of broccoli. There is a blood plasma test for Homocysteine but not often done.

If you can, get tested for vitamin D, B12, B6 and Homocysteine to get base levels and see if they are normal.

Vitamin D modulates the autoimmune system at high enough levels 70 to 80 ng/ml is the natural level. The "normal" we are told (>29 mg/dl) is woefully lacking. Enough to protect from rickets. We evolved as outdoors people but with the industrial revolution and factory and office work we don't get enough vitamin D. We in the temporate zones only get enough ultraviolet in the summer and even then we use protective clothing and SPFs, causing a scary number of people to have low or defficient D, which is a common finding in autoimmune diseases and even fertility.

There is no limit to the amount of B6 we can take. The safe upper limit of choline is 3500 mg or the equivelant of 28 eggs. Folate is not fortified in most gluten free processed food so Celiacs likely don't get enough, even after healing.

 

 

Yes, my D is chronically on low end of “normal” even as I take around 5-6,000 IU’s daily plus whatever is in my calcium & diet.
Yes, twice I had symptoms of Rickets shortly after diagnosis and was still pretty sick with diarrhea! 🫣 That’s when I increased my C, D, K, and started sublingual, encapsulated and more natural supplements… and decided to find a FM doctor!

I will check these links out. Thanks. 

Wow! I am so glad I found this forum!

[Wheatwacked]

I started taking 10,000 iu a day in May 2014.. I took until 2019 to get my plasma up to 47 ng/ml. In another two years i reached 86 and the next test was 80. It's been stable at 80 for about 2 years now. My last test I stopped taking it 3 weeks before the blood draw and my D plasma dropped to 72. The doctor said to continue. At first I read your post.as 5 pills of 6,000 each. Vitamin D and the Immune System, Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective