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bananababy

Airborne gluten reactions

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I have Celiac disease and Dermatitis Herpetiformis.  I have been gluten free for many years but still get very many itchy sores which have been diagnosed as DH.  I seem to be reacting to airborne gluten and wonder if anyone else has this strange phenomenon.  I also wonder if there is anything I could do to prevent this.  Thanks in advance.  Bananababy

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28 minutes ago, bananababy said:

I have Celiac disease and Dermatitis Herpetiformis.  I have been gluten free for many years but still get very many itchy sores which have been diagnosed as DH.  I seem to be reacting to airborne gluten and wonder if anyone else has this strange phenomenon.  I also wonder if there is anything I could do to prevent this.  Thanks in advance.  Bananababy

Do you work in a bakery (or live in a household that bakes using flour), feed farm animals, or plaster walls for a living?  Although it is possible to get exposure from gluten suspended in the air, it is uncommon.  You have to swallow gluten in order to activate celiac antibodies that attack the gut and/or skin.  

Look to your diet for any hidden gluten exposures.  Do you eat out? Do you always read labels (your favorite brand might have change ingredients)?  Do you consume oats?  

I hope this helps.  

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13 minutes ago, cyclinglady said:

Do you work in a bakery (or live in a household that bakes using flour), feed farm animals, or plaster walls for a living?  Although it is possible to get exposure from gluten suspended in the air, it is uncommon.  You have to swallow gluten in order to activate celiac antibodies that attack the gut and/or skin.  

Look to your diet for any hidden gluten exposures.  Do you eat out? Do you always read labels (your favorite brand might have change ingredients)?  Do you consume oats?  

I hope this helps.  

Thank you for your response.  I don’t work or live in a gluten environment but when I am out, often at a restaurant or grocer, I get these itchy reactions and I have not eaten anything.  I may react differently to airborne gluten than others, but I have no doubt that I do have it.  My hope is that there may be a way to prevent this from happening, other than never leaving my house.  Thanks again.

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Hi, 

Sorry to hear you have been getting these symptoms. I too had symptoms despite my strict diet. I agree with the above. First port of call 

Eating out - I advise not doing this

Sharing a kitchen with people who eat gluten - I advise not doing this

Eating processed foods - if you are very sensitive then this could be problem 

Eating grains and other foods that are often culprits for cross contamination - I advise not doing this

If you have are avoiding the above and have cut out oats then, yes I believe airborne could be worth considering. I would avoid farmland that has fresh cut wheat. I would also avoid industrial sized bakeries. Those two are the only issues I have had with airborne gluten.

I would advise seeing a doctor but they do vary in terms of how knowledgeable and helpful they are.

What sort of exposure do you reckon you are getting? :)

 

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Then I  would suggest wearing a mask while running your errands.  See if this prevents a flare-up.  Lots of folks wear one if they have the flu or a cold.  

I do not have DH, but from what other members have posted, antibodies in the skin can take a long time to develop or will flare up for no reason at all.  It can drive a DH sufferer crazy trying to pinpoint the gluten exposure.  Read through the DH section of the forum.  You might find some solutions.  

Nightsky has some excellent advice!  I have learned from my own personal experience that she is correct.  

Gluten free is like a diabetic diet.  The basis is the same.  Gluten triggers celiac disease and carbs trigger insulin resistance.  The spectrum of amounts and exposure varies for each individual.  It is not "one size fits all" at least from my research.  

For me, my glucose meter gives me a fast and easy-to-document picture of how I am processing carbohydrates.  I wish there was a meter for gluten and how it impact me as an individual on a daily basis, but there is not one.  I can only rely on a few blood tests ordered by my GI annually or when I am very ill.  

 

 

 

Edited by cyclinglady
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4 minutes ago, bananababy said:

Thank you for your response.  I don’t work or live in a gluten environment but when I am out, often at a restaurant or grocer, I get these itchy reactions and I have not eaten anything.  I may react differently to airborne gluten than others, but I have no doubt that I do have it.  My hope is that there may be a way to prevent this from happening, other than never leaving my house.  Thanks again.

Oh I worried about that too :( It'll be ok though. It's just a question of working it out x

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5 hours ago, bananababy said:

 

Thank you for your response.  I don’t work or live in a gluten environment but when I am out, often at a restaurant or grocer, I get these itchy reactions and I have not eaten anything.  I may react differently to airborne gluten than others, but I have no doubt that I do have it.  My hope is that there may be a way to prevent this from happening, other than never leaving my house.  Thanks again.

Hi! I have DH.  I was diagnosed in 2010 and have been gluten free since then. I still have chronic itching and sometimes the lesions.  I might have reactions to airborne, but my outbreaks tend to be when I'm stressed, which is most of the time.  Or when I'm sick or my immune system is weakened.  It's not as bad as when I was diagnosed.  I use cream clotrimaozle betamethasone.  Also I take Zyrtec twice a day and benedryl at night.  The dermatologist gave me hydroxyzine and Xanax as needed.  I use Grandma's baking soda soap.  I have had endoscopy and stomach biopsys.  I'm better, but it will be with me and you from now on.  We just have to make the best choices and eat healthy.

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I used to have my dh flare even with certified gluten-free foods. After a couple years it changed to just the itch. Then it went away. So I guess I went from extremely sensitive to less sensitive throughout the years. 

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12 hours ago, NightSky said:

Hi, 

Sorry to hear you have been getting these symptoms. I too had symptoms despite my strict diet. I agree with the above. First port of call 

Eating out - I advise not doing this

Sharing a kitchen with people who eat gluten - I advise not doing this

Eating processed foods - if you are very sensitive then this could be problem 

Eating grains and other foods that are often culprits for cross contamination - I advise not doing this

If you have are avoiding the above and have cut out oats then, yes I believe airborne could be worth considering. I would avoid farmland that has fresh cut wheat. I would also avoid industrial sized bakeries. Those two are the only issues I have had with airborne gluten.

I would advise seeing a doctor but they do vary in terms of how knowledgeable and helpful they are.

What sort of exposure do you reckon you are getting? :)

 

Solid advice. Wish that more people would consider that this might be necessary for some and not entirely paranoid. Could very well be airborne, but most likely culprit is something you're eating. That said, baking, construction/open drywall, farms/animal food and bulk/flour aisles in grocery stores are legitimate worries.

I was recently having frustrating problems with random but minor flare-ups, and have eliminated almost all packaged food (even gluten-free) for a bit. It has helped tremendously. I hope that perhaps my sensitivity levels will calm down in a few years, but not being itchy and scabby is worth almost any cumbersome restriction.

I think for me the problem has largely been to do with the use of oats in many dedicated factories (even gluten-free oats make me very, very sick). I came to this when lodging a complaint/notifying a company that I'd had an issue with one of their GFCO certified products. I figured that mistakes could happen, and could not imagine anything else I'd eaten that day could be a culprit (had only eaten veggies/rice/meat) so I contacted them to report it. Their response made me quite sure that the lot my food came from was fine from a legal/GFCO gluten-free perspective, but revealed that they make all their gluten-free products on the same line - which include granolas, oat flour etc. When I investigated it a bit more, I realized that many of the gluten-free products that I suspected were causing me problems (but had no real basis for why) were all made by companies that also make lots of gluten-free oat products. Previously, I had only avoided gluten-free products that contained oats as an explicit ingredient, and had never considered that the residues from gluten-free oats could be problematic.

Unfortunately, now that gluten-free oats have been legalized in Canada, it is very difficult to find companies that do not use them in some capacity, which is why I axed most of the processed gluten-free stuff. Presumably, because the oats are considered gluten-free, there is no reason to clean the line or employ any allergen food safety practices from the company's perspective. While this may not be a concern outside of those who are super sensitive, it might worth considering if you are still having problems or have a known issue with oats.

At the very least, avoiding most processed gluten-free foods (breads/flours/pastas/baked goods) seems to have helped me a lot, even if minor contamination with oats is not the true culprit. I would vouch for mostly sticking with rice, dry beans, root veggies and fresh corn (from the cob) as complex carbohydrate sources for a bit, even though it's a bit inconvenient. 

 

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I am sorry to hear you are having these problems with airborne particle sensitivity. My initial symptoms were neurological (extreme fatigue and visual migraines) and dermatological.  I had "eczema" from the base of my skull to my bra-line that itched and burned terribly.   I do not have Celiac disease but I do have gluten intolerance.  I have remained strictly gluten free for 6.5 years now (except for occ'l "glutenizing" by someone trying hard to be nice and feed me something they believe is gluten-free). 

The first year I was gluten free I continued to have this rash in a smaller area but it would flare in the hairline.  We found gluten free oats in a product we used and cutting out oats almost completely alleviated my skin reaction.  My doctor informed me that the protein in oats is similar to other grains containing gluten so I may be reacting to it even though it is not actually gluten.  

I now use only gluten free hair products as I have long hair and I figure that even though it is external hair blows in my face and I push it away or I may touch my hair to push it out of the way when eating or socializing.  Everyone is different as far as items they tolerate but I have had good results with Griffin Remedy (available online at their website), Aura Cacia (although they do use Cetryl Alcohol which I used to try to avoid for other reasons), and Avalon Organics Cucumber gluten-free shampoo and conditioner.  You probably already use gluten-free facial care products and lip glosses as you sound knowledgeable about Celiac and gluten-free issues.

I don't buy any of my gluten free products from a store where they are shelved with the regular baking products.  (I would be OK with washing an item if it were plastic packaged but many are in cardboard so I personally feel the risk of contamination goes up).  I am blessed to be married to a man who is open minded and glad to see me feeling better so there is nothing with gluten in our home (in food products).  My diet is similar to the person who stated, "Solid advice" above. 

Finally, if I am going out with friends I take food along with me except for a very few establishments where I am sure that I am safe.  I also bring a bottle of water or iced tea, and even a napkin, as some people preparing food may be touching something with gluten and then handling glasses for beverages or setting tables without being fully aware (as was mentioned above pertaining to the gluten-free oats).  I also found with the gluten-free diet fad that I have to be vigilant in asking about preparation in unknown venues (i.e. We were on a ski vacation and I was excited to see gluten-free items on the menu BUT the preparation area was not segregated, nor was the cookware.  I was able to explain my needs and accommodations were made.  Hopefully, the owner were more educated regarding the needs of people with gluten sensitivities vs. dietary preference and made some changes in their practices.)

I hope you find the piece to your puzzle that works for you!

 

 

Edited by gluten intolerant:(
Left out ski vacation experience
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On 24/09/2017 at 6:38 AM, apprehensiveengineer said:

Solid advice. Wish that more people would consider that this might be necessary for some and not entirely paranoid. Could very well be airborne, but most likely culprit is something you're eating. That said, baking, construction/open drywall, farms/animal food and bulk/flour aisles in grocery stores are legitimate worries.

I was recently having frustrating problems with random but minor flare-ups, and have eliminated almost all packaged food (even gluten-free) for a bit. It has helped tremendously. I hope that perhaps my sensitivity levels will calm down in a few years, but not being itchy and scabby is worth almost any cumbersome restriction.

I think for me the problem has largely been to do with the use of oats in many dedicated factories (even gluten-free oats make me very, very sick). I came to this when lodging a complaint/notifying a company that I'd had an issue with one of their GFCO certified products. I figured that mistakes could happen, and could not imagine anything else I'd eaten that day could be a culprit (had only eaten veggies/rice/meat) so I contacted them to report it. Their response made me quite sure that the lot my food came from was fine from a legal/GFCO gluten-free perspective, but revealed that they make all their gluten-free products on the same line - which include granolas, oat flour etc. When I investigated it a bit more, I realized that many of the gluten-free products that I suspected were causing me problems (but had no real basis for why) were all made by companies that also make lots of gluten-free oat products. Previously, I had only avoided gluten-free products that contained oats as an explicit ingredient, and had never considered that the residues from gluten-free oats could be problematic.

Unfortunately, now that gluten-free oats have been legalized in Canada, it is very difficult to find companies that do not use them in some capacity, which is why I axed most of the processed gluten-free stuff. Presumably, because the oats are considered gluten-free, there is no reason to clean the line or employ any allergen food safety practices from the company's perspective. While this may not be a concern outside of those who are super sensitive, it might worth considering if you are still having problems or have a known issue with oats.

At the very least, avoiding most processed gluten-free foods (breads/flours/pastas/baked goods) seems to have helped me a lot, even if minor contamination with oats is not the true culprit. I would vouch for mostly sticking with rice, dry beans, root veggies and fresh corn (from the cob) as complex carbohydrate sources for a bit, even though it's a bit inconvenient. 

 

This - I agree with all of this. I have also twigged that if oats are a problem then certified processed gluten free food is out. And I got really sick from drywall. It's such a relief to hear this as there was a time when I was feeling like an alien for thinking these things. Well I agree 99.9%. I had a skin problem, possibly DH, which got better when I gave up gluten, improved further when I gave up processed foods but it wasn't until I stopped eating dry beans that I stopped getting any flares. I am also sensitive to egg though (although that does something different to my skin) so I'm a bit a skin-reactive person. Could be worth cutting it out just to see if that helps?

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Ah yes... dry beans.

I am fortunate to live near a plant that only processes beans, pulses and rice (Western Rice Mills if you're on the west coast). I doubt that they test, but I would suspect that the biggest part of the risk with that type of food is in the plant where they pack them, as things like barley pearls and wheat berries are often sold as dried goods and would probably be done on the same lines. I would agree that dry beans could be problematic depending on source. 

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On 9/24/2017 at 8:51 AM, gluten intolerant:( said:

I am sorry to hear you are having these problems with airborne particle sensitivity. My initial symptoms were neurological (extreme fatigue and visual migraines) and dermatological.  I had "eczema" from the base of my skull to my bra-line that itched and burned terribly.   I do not have Celiac disease but I do have gluten intolerance.  I have remained strictly gluten free for 6.5 years now (except for occ'l "glutenizing" by someone trying hard to be nice and feed me something they believe is gluten-free). 

The first year I was gluten free I continued to have this rash in a smaller area but it would flare in the hairline.  We found gluten free oats in a product we used and cutting out oats almost completely alleviated my skin reaction.  My doctor informed me that the protein in oats is similar to other grains containing gluten so I may be reacting to it even though it is not actually gluten.  

I now use only gluten free hair products as I have long hair and I figure that even though it is external hair blows in my face and I push it away or I may touch my hair to push it out of the way when eating or socializing.  Everyone is different as far as items they tolerate but I have had good results with Griffin Remedy (available online at their website), Aura Cacia (although they do use Cetryl Alcohol which I used to try to avoid for other reasons), and Avalon Organics Cucumber gluten-free shampoo and conditioner.  You probably already use gluten-free facial care products and lip glosses as you sound knowledgeable about Celiac and gluten-free issues.

I don't buy any of my gluten free products from a store where they are shelved with the regular baking products.  (I would be OK with washing an item if it were plastic packaged but many are in cardboard so I personally feel the risk of contamination goes up).  I am blessed to be married to a man who is open minded and glad to see me feeling better so there is nothing with gluten in our home (in food products).  My diet is similar to the person who stated, "Solid advice" above. 

Finally, if I am going out with friends I take food along with me except for a very few establishments where I am sure that I am safe.  I also bring a bottle of water or iced tea, and even a napkin, as some people preparing food may be touching something with gluten and then handling glasses for beverages or setting tables without being fully aware (as was mentioned above pertaining to the gluten-free oats).  I also found with the gluten-free diet fad that I have to be vigilant in asking about preparation in unknown venues (i.e. We were on a ski vacation and I was excited to see gluten-free items on the menu BUT the preparation area was not segregated, nor was the cookware.  I was able to explain my needs and accommodations were made.  Hopefully, the owner were more educated regarding the needs of people with gluten sensitivities vs. dietary preference and made some changes in their practices.)

I hope you find the piece to your puzzle that works for you!

 

 

Here like me. you might consider turning to grain free options for gluten free foods from grain free companies. I with simple mills mixes for some things that I have not perfected in my own bakery. Julian Bakery Makes Grain free/starch free/low carb breads and mixes (recently perfected my own grain free bread in my bakery so I do not use them anymore but used to swear by them). I also tend to source my nut meals from companies that exclusively deal with nuts/seeds to avoid issues.

On a side note with companies and standards....recently ALL hemp protein and hemp companies aside from GERBS seem to have gluten contamination issues. Farmers seem to grow it in rotation with wheat and even use the same equipment for harvest and transportation -_-. The hemp industry got a bit too big to stay gluten-free with high standards it seems. Last Jarrow Batch came back positive, Manitoba did thought slight, and nutiva hemp has had issues for the past 2 years.

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On 26/09/2017 at 6:18 AM, apprehensiveengineer said:

Ah yes... dry beans.

I am fortunate to live near a plant that only processes beans, pulses and rice (Western Rice Mills if you're on the west coast). I doubt that they test, but I would suspect that the biggest part of the risk with that type of food is in the plant where they pack them, as things like barley pearls and wheat berries are often sold as dried goods and would probably be done on the same lines. I would agree that dry beans could be problematic depending on source. 

Hi,

I was a bit delayed replying to this as I have been battling airborne gluten of all things! (The building I live in has had the entire front removed and re-plastered.) I live on the ground floor so every time I opened my door, a gust of wind blew plaster dust in to my house and particularly living room. I have had to sleep in my daughter's room, eat dinner standing in the kitchen and on two occasions I had to escape and stay elsewhere. I'm pleased to say though that I bounced back from the reactions waaaay better than I did before I started avoiding all sources of cross contamination. 

Anyway, that's amazing that you live by a place that processes things that are truly gluten free. That's like hitting the gluten-free jackpot! Enjoy

 

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Funny thing I was looking at pollution mask for heading out. I found tis one company that makes some really high quality ones that do not look that bad and even had skin options. They would be great for people that have to head by a place doing construction, etc. Or just during high allergy season.

I am looking at getting the Techno  or Cinqro myself http://respro.com/pollution-masks

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12 hours ago, NightSky said:

Hi,

I was a bit delayed replying to this as I have been battling airborne gluten of all things! (The building I live in has had the entire front removed and re-plastered.) I live on the ground floor so every time I opened my door, a gust of wind blew plaster dust in to my house and particularly living room. I have had to sleep in my daughter's room, eat dinner standing in the kitchen and on two occasions I had to escape and stay elsewhere. I'm pleased to say though that I bounced back from the reactions waaaay better than I did before I started avoiding all sources of cross contamination. 

Anyway, that's amazing that you live by a place that processes things that are truly gluten free. That's like hitting the gluten-free jackpot! Enjoy

 

Oh geeze. That's horrible... and that would definitely do it. I live in an older apartment (c 1940s) in which the drywall is definitely wheat-based, and realized I kept getting sick when I cooked squash. I knew that the squash was not the problem (obviously), but stopped eating it nonetheless as the pattern was clear, even though I couldn't figure it out. Sometime later, when I was going through my toolbox, I realized that my small hacksaw (which I used to cut the squash - much easier than using a knife) was sitting amongst all these drywall screws that I had removed from the walls recently. D'oh!

Now, I had been washing the hacksaw before/after kitchen use... but since the edges are serrated, it would not be possible to get rid of any serious wheat contamination. I felt very, very stupid and now I suffer through using my kitchen knives on my squash.

Anyways. Glad you figured out what the problem is and hopefully they're done construction soon. These mysteries happen to the best of us!

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12 hours ago, apprehensiveengineer said:

Oh geeze. That's horrible... and that would definitely do it. I live in an older apartment (c 1940s) in which the drywall is definitely wheat-based, and realized I kept getting sick when I cooked squash. I knew that the squash was not the problem (obviously), but stopped eating it nonetheless as the pattern was clear, even though I couldn't figure it out. Sometime later, when I was going through my toolbox, I realized that my small hacksaw (which I used to cut the squash - much easier than using a knife) was sitting amongst all these drywall screws that I had removed from the walls recently. D'oh!

Now, I had been washing the hacksaw before/after kitchen use... but since the edges are serrated, it would not be possible to get rid of any serious wheat contamination. I felt very, very stupid and now I suffer through using my kitchen knives on my squash.

Anyways. Glad you figured out what the problem is and hopefully they're done construction soon. These mysteries happen to the best of us!

You must be talking about winter squash. They are very hard! There's a trick though that you can use so they aren't so difficult & dangerous to cut. Nuke it for 2 minutes. Then it will be soooooooo much easier to cut with your kitchen knives. It works like a charm!

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Nice. I'm talking butternut, spaghetti, pumpkin. The hacksaw actually works beautifully, I just need to buy a kitchen-specific one. Squash are woody in texture, so you power through it in about 10 seconds if you have good hacksaw technique :)

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hi Bananababy,

I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers.

I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better.

I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating.

i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off.

I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013.

After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.

i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.  

I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.  

Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love.

I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.

So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!  

Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.  

 

Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have.

so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free.

My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases.

sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did.

i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble.

i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.  Be blessed.

 

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Round-up/glyphosate does not cause a celiac reaction directly: https://gmoanswers.com/ultimate-gluten-free-does-glyphosate-cause-celiac-disease-actually-no

You did not say if you had been formally diagnosed with celiac disease, but if so, gluten is harmful for you no matter where it comes from, even if you do not seem to react to it. Some people with celiac disease seem not to have strong/obvious reactions to barley for example, but it is most assuredly causing intestinal damage when they ingest it.

If you have not been formally diagnosed, then perhaps you are not reacting to gluten at all - the foods we eat are chemically quite complex, and it is difficult to isolate which components might be making us sick. If you are able to eat gluten in China without issue, then it might not be the gluten. Perhaps there is some other subtle difference between your diet in China vs. Canada that is causing your issue. I hope that you are able to figure this out, as this can be quite frustrating.

I think sometimes people with celiac disease or apparent NCGS hop on the conspiracy theory/alternative medicine train a bit because we feel that we have had our legitimate concerns disregarded by mainstream science. This is certainly true - research in this area is underfunded, and many healthcare practitioners are not up to date on existing research and give incorrect advice as a result. I don't think however, that is a good reason to abandon hope and reason entirely - I'd rather ride the bus with the flat tire than invest in a magic carpet.

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I get horrible reactions from gluten in the air. I went to the movie theater today and my chest tightened up and I had a phlegmy cough for a few hours. My shoulders get prickly, my head hurts. It's awful. Sometimes I get hives or blisters. I think I'm going to get masks

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7 hours ago, Mary mcginty said:

I get horrible reactions from gluten in the air. I went to the movie theater today and my chest tightened up and I had a phlegmy cough for a few hours. My shoulders get prickly, my head hurts. It's awful. Sometimes I get hives or blisters. I think I'm going to get masks

I don't know what gluten would be in the air at a movie theater.  Someplace with a bakery might have flour floating but probably not a movie theater.  Also, those don't really sound like Celiac reactions, more like an allergy.   Maybe mold or an air freshener?  Someone who sat near you wearing a  cologne?

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7 hours ago, Mary mcginty said:

I get horrible reactions from gluten in the air. I went to the movie theater today and my chest tightened up and I had a phlegmy cough for a few hours. My shoulders get prickly, my head hurts. It's awful. Sometimes I get hives or blisters. I think I'm going to get masks

Movie theater....not a place for airborne gluten unless yours had a bakery inside. Do you have a problem with corn? I am allergic to corn myself, and movie theaters always result in rashes, fever, racing heart, problems breathing etc. And yes mask are wonderful ,there is a company that makes pollution mask that work wonders in these kinds of situations. http://respro.com/store/product/techno-mask

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