Airborne Gluten...

[PlayOutside]

I need some advice- My entire family is celiac. Me, husband, and at least 3 of our 4 kids. Our home is Gluten free. We have been Grain free and dairy free for about 5 months. This week, my daughter and I (I think she and I are both "super sensitive") both got glutened at church- just passing around the plate of bread for communion! I got a bad headache, then nausea, then had to get fresh air. It cleared up outside, but almost immediately upon teen terming the building, I started to feel lousy. Tonight I was at work- a shared large office with shared computers. People eat in the room- at the computers. I started to get this tightness in my chest- that's what happens in the bread aisle at the grocery store... My question: how do I do this? How do you do it? My house is safe. No gluten. The rest of the world.... Not so much! Any suggestions?

[shadowicewolf]

I need some advice- My entire family is celiac. Me, husband, and at least 3 of our 4 kids. Our home is Gluten free. We have been Grain free and dairy free for about 5 months. This week, my daughter and I (I think she and I are both "super sensitive") both got glutened at church- just passing around the plate of bread for communion! I got a bad headache, then nausea, then had to get fresh air. It cleared up outside, but almost immediately upon teen terming the building, I started to feel lousy. Tonight I was at work- a shared large office with shared computers. People eat in the room- at the computers. I started to get this tightness in my chest- that's what happens in the bread aisle at the grocery store... My question: how do I do this? How do you do it? My house is safe. No gluten. The rest of the world.... Not so much! Any suggestions?

In the air? Unless you are in an area where flour flies, then that probably isn't the cause.

 

Both the plate and the computers can be explained as CC on the table or computer.

 

The fact that it cleared up outside also leads me to believe that it may be a stress reaction.

[1desperateladysaved]

Welcome to the forum.  Sorry about your struggles.  I face similar problems and really don't have good solutions yet.  I am waiting and hoping that my body will settle down a bit as my doctors think it might.

 

D

[IrishHeart]

It is highly unlikely you are being glutened by passing the plate at church or walking down a bread aisle, hon.

 

Maybe people's perfumes, lack of fresh air, a tummy bug ---or something else is making you queasy.

 

"Airborne gluten" usually refers to flour that you can inhale and it goes down your throat, into your gut. That's how a gluten-reaction occurs.

 

Try not to worry that being near packaged breads, a communion wafer and people eating around you are somehow going to make you sick

because again, it is extremely unlikely. This is just not possible.

 

We have to swallow gluten for it to cause a reaction.

 

Best wishes.

[weluvgators]

It is possible to react to airborne gluten, even outside of airborne flour. That is not a typical reaction, but it is possible. Those airborne type reactions are generally considered to be on the allergy side of the gluten hypersensitivity spectrum.

There are heaps of things going on in the church setting and at work. Our family had to tackle these types of issues with a few approaches. Those symptoms you describe may warrant a trip to the allergist to determine if an Allergy Action Plan is in order. Each of my kids and myself have a different allergy action plan based on our individual symptoms. Reviewing allergy status and response to allergy medicines can also help figure out what is going on. I wish we had incorporated more allergy protocols earlier in our journey, but it was difficult for us to understand that both celiac and wheat allergy could be parts of our puzzle.

Anxiety is another component to consider. I found Sloane Miller's work (also known as Allergic Girl) to be very helpful as we tried sorting out our issues. Her book is a really great read, and I really appreciated understanding her experiences related to anxiety and allergies. And while I am certain that anxiety can be crippling, I fully appreciate that allergy induced respiratory distress (asthma and/or anaphylaxis) is a real possibility for some celiacs which can understandably be a source of anxiety. Being prepared to deal with an allergic reaction is a really great way to help reduce the anxiety living with severe allergies can cause.

Good luck figuring it out. I am happy to share more of our experiences if you want.

[PlayOutside]

Many thanks for your replies- I think the allergist is a great idea- perhaps we are celiac and ALSO have an allergy?? I'm sure that is not common!  I don't know, but that sounds like a possible reason for my daughter and myself having such extreme reactions.

I know that she and I are not typical. She and I both can not tolerate most grains and only a minute amount of any Gluten Free processed food. My other kids and husband are fine with being gluten free & can tolerate grains. So, since I'm the cook... we are grain free/ dairy free- eating tons of fruit and veggies and meats and feeling generally great (except at church).

 

Anxiety - also an interesting idea. I'm not sure that's what is going on, because I feel like it's more of a physical reaction- not sure if I can explain that other than comparing to someone with diabetes just "knows" when their blood sugar is dropping... not sure that makes sense. The allergy induced respiratory distress is more of what I am feeling- which I am sure you are correct in that will bring on some anxiety. It's a puzzle!

Thanks again for your kind replies- you've given me much to think on!

[dilettantesteph]

This link talks about celiac reactions to airborne gluten: Open Original Shared Link

There were 2 farmers who reacted to feeding their cattle grain from the dust particles.   It is conceivable the there are dust particles of the bread that you pass around the church.  It is also conceivable that it is psychological.  

 

Our noses are connected to our stomachs.  If we inhale some gluten, it can get into our stomachs and be ingested.  I got glutened when I threw out our flour after diagnosis and I did it as carefully as I possibly could.  The amount I breathed in was imperceptible.  I am super sensitive and the amounts that it takes me to react aren't noticeable to other celiacs and they have a hard time understanding how a reaction could be possible.  Fortunately there have been more case reports and studies done on this by now.  I have referred to a few in the super sensitive section in other posts. 

 

I was in a church service where they did communion with a loaf of bread which they ripped apart by hand with crumbs flying everywhere.  I got up and left the building.  I can only imagine what everyone thought of me.  Can you perhaps sit at the back of the church?

 

To cope, I avoid the bread aisle in the store.  I walk the long way around.  I wash hands when I get home and pay attention to not touch my hands to my face or bite my nails when I am out.  I avoid places where they use flour.  I haven't had problems at work, but work places vary a lot in how much food is around.  You can try to make modifications as necessary. 

[IrishHeart]

If you are allergic to gluten in addition to being a celiac, that is an entirely different beast to tackle and yes, you should see an allergist to rule that out.

 

Best wishes to you! 

[stanleymonkey]

My eldest has a DH flair if we walk down the flour aisle.

A few poster mentioned anxiety. My eldest has anaphylactic allergies, anxiety is part of an allergic reaction. I would see an allergist. There is no test for gluten itself, but you could get tested for wheat barley etc. my eldest couldn't even go in a Chinese restuarant if they were cooking wontons or egg noodles as she would start acting weirdly(she couldn't see what they were cooking) and would have to go outside for fresh air.

[PlayOutside]

My eldest has a DH flair if we walk down the flour aisle.

A few poster mentioned anxiety. My eldest has anaphylactic allergies, anxiety is part of an allergic reaction. I would see an allergist. There is no test for gluten itself, but you could get tested for wheat barley etc. my eldest couldn't even go in a Chinese restuarant if they were cooking wontons or egg noodles as she would start acting weirdly(she couldn't see what they were cooking) and would have to go outside for fresh air.

Allergist appointment in the works! Thanks again for your ideas- very much appreciated!!

[shadowicewolf]

Anxiety can cause physical symptoms as well.

 

I can see going down a flour isle as being an issue. What if a person who came before you dropped a bag of flour and it sent out a cloud of flour? That sort of thing i can see.

 

As for feeding cattle grain, from personal experience, the grain is sometimes dusty and can do the same as a bag of flour if, say, pored straight out of the bag. Of course, it depends on the type of feed as well. Some don't do that.

[Gemini]

You cannot have a Celiac reaction by just walking down the bread aisle, unless of course there was a bag explosion and there is flour in the air.  Same with feed....if you are pouring or handling it and it's dusty and you inhale some of that dust, it will reach the gut and can cause a reaction. I think that the above 2 scenarios are no brainers and common sense.  But there is also the phenomenon where you smell food which contains gluten and you feel like you are having a reaction, when in reality it most likely is a psychosomatic reaction.  I view it as a way of your body protecting you against foods which make you sick if properly ingested. It happens to me when I smell wheat pizza cooking or donuts being made....it's an all around YUCK for me.  Once I step outside into air where the smell is gone, my symptoms go away quickly.  Lots of people experience this and I think it is perfectly normal.  I am extremely sensitive to gluten and can walk down the bread aisle with no problem.  I am not saying I like doing that because the smell is gross.  It smells like chemical bread to me....I have an insanely sensitive sense of smell.  But it is safe to do under most circumstances.

 

Then there is the true allergy problem.  You would react to much lesser amounts of the offending product...sort of like a peanut allergy.  You know what miniscule amounts of a peanut will do to person with a severe nut allergy.  Same thing with a wheat allergy, depending upon the severity of the allergy. If you experience tightness in your chest from exposure to wheat crumbs, then it most likely is an additional allergy and not a Celiac reaction.

[stanleymonkey]

My 4 yr old doesn't even know what a bag of flour is, her DH flair is very reall y in the flour aisle. Our ped has said that given all the modified, etc flours it is conceivable that people can have celiac symptoms from something as simple as being in an area with bread or flour. So many foods are changed so much from what they were 15 yrs ago, the foods aren't recognized by our bodies as a non threat hence the rise in allergies,many even thing s like celiac disease. The gluten in foods today is not the same as our grandparents ate. Things have been modified to produce higher yields potency and shelf life.

[Gemini]

My 4 yr old doesn't even know what a bag of flour is, her DH flair is very reall y in the flour aisle. Our ped has said that given all the modified, etc flours it is conceivable that people can have celiac symptoms from something as simple as being in an area with bread or flour. So many foods are changed so much from what they were 15 yrs ago, the foods aren't recognized by our bodies as a non threat hence the rise in allergies,many even thing s like celiac disease. The gluten in foods today is not the same as our grandparents ate. Things have been modified to produce higher yields potency and shelf life.

You have to ingest flour to cause a Celiac reaction and you can ingest it if a bag of flour was spilled and there is airborne flour ...that is a no-brainer.  But if there is no airborne flour and you just walk down the flour aisle, the odds of a true Celiac reaction are pretty slim.  There are many types of reactions and allergic reactions are just as common as Celiac.  Yes, flour is super gluten today, that is common knowledge if you have a wheat problem but bagged flour on a shelf in the supermarket is not automatically going to harm you.

[Colleeney]

I am kinda confused here. I too reacted to airborne gluten. It happened the first time at Bob's Red Mill (love the product but store is full of flour dust(. Strange as it sounds 4 hours later I went into a horrible asthma attack and the gi stuff. Another time I managed to get fresh picked, fire roasted in the husk corn at our local fair. I immediately started sneezing, choking and wheezing. Turns out the corn field was next to huge fields of rye grass being harvested and it had been very windy. GI stuff hit 4 hours later. Sometimes, like this morning, I wake up completely congested, sneezing, and then the stomach cramps/diarrhea hits. Other times I just have the GI stuff. BTW it seems like my reaction is from Three Bakers rye style that every indication is completely safe. Anyone else react to it? What part of what I described could be allergy and what do you do if it is? Thanks

[weluvgators]

What part of what I described could be allergy and what do you do if it is? Thanks

All of the symptoms you describe could be allergic reactions, or a combination of your body's allergic and celiac response. To help identify allergies, a person generally visits an allergist to help determine 1) likely/ probable allergens and testing methods to be used to refine known allergens identification and 2) action plan to be used in event of allergic reaction. Antihistamines are a general first line defense in allergic reactions and are a critical part of our family's management plan. If asthma is diagnosed, an inhaler is commonly prescribed.

Hope that helps.

[dilettantesteph]

It seems that some celiacs believe that if it is a reaction that they don't have, it must be allergic.  It has been well established that some celiacs are sensitive to lower levels of gluten than others.  That could also be a reason why one reacts to something that another doesn't.  There are general indicators of allergy as opposed to a celiac reaction that can be discussed with an allergist. 

[MarkLevy]

sorry but i dont buy into this true celiac reaction stuff...what is a true celiac reaction anyway? everyone reaction is different. celiac reactions, allergy reactions. im sick of listening to people, most of the time educated people...doctors...etc who think that everyone falls into this neat little category. THERE IS NO SUCH THING. myself i walk down the bread isle im in serious trouble. instant brain fog instant nausea instant kidney stone like gi pain instant rage / anger instant on the toliet and on the toliet for hours in both direction...trust me i didnt sell my catering company and deli because i wanted to i sold it because going to work every day was making me so ill i cant describe it. i wouldnt test positive either. gluten wouldnt show up on any standard test and thats when i was still eating it. i wasnt skin and bones or vitamin deficit. i didnt have any classic sign of celiac disease. what i did have was more idiot doctors repeatedly telling me i was insane and send to shrinks. after finally finding a lab on line i could get genetic testing done without a doctors order as ten different idiot doctors would not send me for  because they couldnt think outside the box...guess what i tested positive. go figure. so forgive theirritated undertone to this post of mine but finally seeing others who are airborne sensitve and to hear someof the replys it irks me to say the least. ill just say in conclusion ican be sound asleep and if someone makes toast as just happened when on vacation i awoke in bed covered in vomit as i was vomitting as i awoke like at the same time...instant reaction...no warning...two pieces toast in a toaster on the other side of the house...idk...sigh...all know is if im so sick the same way when im posioned by eating gluten and so sick the same way when im posioned by smelling gluten and injecting myself with an epi pen and takning benadryl and a rescue inhaler doesnt help either (remember i said i had a bunch of idiot doctorstrying to tell me maybe its not in my head then its gotta be some rare allergic reaction and epi and benaryl will fix it...instantly.....yeah thanks doctors...all u did was add tachycardia and extreme aggitation and restlessness from both epi and benadryl on top of a brutal gluten reaction inhaled eaten or licked on  a stamp)

 

i think the reason im posting this rant (sorry) is two fold. first as a way to get this aggrevation off my chest from a lifetime ofbeing posioned and kicked aside if you willand made to feel crazy and two to tell anyone who is listening who is expierencing similar symptoms to believe their bodies and dont believe they are crazy like i did for so many years

[psawyer]

It seems that some celiacs believe that if it is a reaction that they don't have, it must be allergic.  It has been well established that some celiacs are sensitive to lower levels of gluten than others.  That could also be a reason why one reacts to something that another doesn't.  There are general indicators of allergy as opposed to a celiac reaction that can be discussed with an allergist.

Indeed. Itching (not on the skin as in DH), swelling, shortness of breath, hives, eye irritation and a few other symptoms are typical of allergies, not an autoimmune response. Many people with celiac disease also have allergies to certain grains. The fact that you react (which nobody is disputing) does not mean that it is not an allergy that you have in addition to celiac disease.

[dilettantesteph]

Indeed. Itching (not on the skin as in DH), swelling, shortness of breath, hives, eye irritation and a few other symptoms are typical of allergies, not an autoimmune response. Many people with celiac disease also have allergies to certain grains. The fact that you react (which nobody is disputing) does not mean that it is not an allergy that you have in addition to celiac disease.

 

If you are referring to my reactions, they are not typical of an allergic response.  They are typical celiac disease symptoms.  If you are providing more details to help people decide whether or not to go see an allergist, no problem.  I was a bit vague because I didn't feel comfortable giving details when I am not an MD or an allergy sufferer.

[PlayOutside]

hi all-

just checking back in for an update- went to an allergist and I'm not allergic to anything.. ugh. I think this is just going to be my life!

 

I can mostly just tolerate whole foods- and the entire family does fine as long as we are all just eating fruit, veggies, and meat. (and those Enjoy Life Chocolate chips!)

 

I start feeling crappy (headache and Gi probs) if I'm in the grocery store too long- they do have a bakery - I've considered asking when they bake, so I can plan to be there when nothing's cooking, but haven't done that yet.

 

I really hate how all social functions are around food. We are trying to still be social- I just pack "safe" food for my family. I know people must think we are weird, but better than than feeling like crap.

Anyway, just wanted to let everyone know that we are oK- I think I have moved through the stages of grief and am now at "acceptance"....

[dilettantesteph]

I can mostly just tolerate whole foods-

 

I really hate how all social functions are around food. We are trying to still be social- I just pack "safe" food for my family. I know people must think we are weird, but better than than feeling like crap.

 

Me too and me too.  I'm glad that you are doing better.

[oceangirl]

I am quite sure I react to airborne gluten such as being at my Mom's or sister's after theyve made bread or cakes.  It's real.

lisa

[Peaceflower]

sorry but i dont buy into this true celiac reaction stuff...what is a true celiac reaction anyway? everyone reaction is different. celiac reactions, allergy reactions. im sick of listening to people, most of the time educated people...doctors...etc who think that everyone falls into this neat little category. THERE IS NO SUCH THING. myself i walk down the bread isle im in serious trouble. instant brain fog instant nausea instant kidney stone like gi pain instant rage / anger instant on the toliet and on the toliet for hours in both direction...trust me i didnt sell my catering company and deli because i wanted to i sold it because going to work every day was making me so ill i cant describe it. i wouldnt test positive either. gluten wouldnt show up on any standard test and thats when i was still eating it. i wasnt skin and bones or vitamin deficit. i didnt have any classic sign of celiac disease. what i did have was more idiot doctors repeatedly telling me i was insane and send to shrinks. after finally finding a lab on line i could get genetic testing done without a doctors order as ten different idiot doctors would not send me for because they couldnt think outside the box...guess what i tested positive. go figure. so forgive theirritated undertone to this post of mine but finally seeing others who are airborne sensitve and to hear someof the replys it irks me to say the least. ill just say in conclusion ican be sound asleep and if someone makes toast as just happened when on vacation i awoke in bed covered in vomit as i was vomitting as i awoke like at the same time...instant reaction...no warning...two pieces toast in a toaster on the other side of the house...idk...sigh...all know is if im so sick the same way when im posioned by eating gluten and so sick the same way when im posioned by smelling gluten and injecting myself with an epi pen and takning benadryl and a rescue inhaler doesnt help either (remember i said i had a bunch of idiot doctorstrying to tell me maybe its not in my head then its gotta be some rare allergic reaction and epi and benaryl will fix it...instantly.....yeah thanks doctors...all u did was add tachycardia and extreme aggitation and restlessness from both epi and benadryl on top of a brutal gluten reaction inhaled eaten or licked on a stamp)

i think the reason im posting this rant (sorry) is two fold. first as a way to get this aggrevation off my chest from a lifetime ofbeing posioned and kicked aside if you willand made to feel crazy and two to tell anyone who is listening who is expierencing similar symptoms to believe their bodies and dont believe they are crazy like i did for so many years

I have airborne gluten allergy but not coeliac disease. I cannot be in the same room as gluten without reacting. If I walk through a school hall mid-morning when staff in the kitchen next to it are making the dinners, I have a reaction. It is not psychological as some would say. I have too many confirmations of it for that to be so. Please can you tell me what this genetic testing is? I'd like medical proof so that my GP will believe me and write a report for my boss at work. I am beginning to appear like I am avoiding meetings. (Where food is present).

[kareng]

I have airborne gluten allergy but not coeliac disease. I cannot be in the same room as gluten without reacting. If I walk through a school hall mid-morning when staff in the kitchen next to it are making the dinners, I have a reaction. It is not psychological as some would say. I have too many confirmations of it for that to be so. Please can you tell me what this genetic testing is? I'd like medical proof so that my GP will believe me and write a report for my boss at work. I am beginning to appear like I am avoiding meetings. (Where food is present).

Allergies are different than Celiac. People do seem to have allergic reactions to airborne allergens. But that is different than Celiac Disease. Genetic testing for Celiac Disease won't tell you if you have an allergy. Nor will it tell you if you have celiac for certain. About 30% of the population has a gene for Celiac but only 1% of the population have celiac.