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Airborne Gluten...

gluten super sensitive church work

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31 replies to this topic

#16 weluvgators

 
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Posted 09 August 2013 - 04:05 PM

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.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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#17 dilettantesteph

 
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Posted 10 August 2013 - 10:03 AM

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. 


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#18 MarkLevy

 
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Posted 07 September 2013 - 01:53 PM

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


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#19 psawyer

 
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Posted 07 September 2013 - 05:47 PM

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.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#20 dilettantesteph

 
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Posted 08 September 2013 - 05:18 AM

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.


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#21 PlayOutside

 
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Posted 06 November 2013 - 01:43 PM

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".... ;)


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#22 dilettantesteph

 
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Posted 07 November 2013 - 04:29 AM

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.


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#23 oceangirl

 
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Posted 04 December 2013 - 06:46 AM

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


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#24 Peaceflower

 
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Posted 12 March 2014 - 05:03 PM

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).
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#25 kareng

 
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Posted 12 March 2014 - 05:12 PM

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.
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#26 Peaceflower

 
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Posted 12 March 2014 - 05:16 PM

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.)


Whenever I go to social functions involving food I suffer for days afterwards... Because I was in the vicinity of gluten. I have found that being in places with good ventilation can be ok. I was at a dinner function in a hotel with really high ceilings and I didn't react. On another occasion, someone next to me ate a cracker biscuit and I lost my speech and couldn't walk. It is real, not imagined, for me. I cannot go into a supermarket without reacting, or drive the car if my husband has eaten bread in it in the last day or so. I get numbness, weakness, brain fog, memory problems, what I call sensory overload, speech difficulty, dizziness, co-ordination problems. I am not coeliac and standard testing does not identify this kind of allergy, so the tests have not revealed it. The allergy specialist told me to expect them not to show anything. She thinks my reaction is anaphylactic in that it sounds like immediate drop in blood pressure. I also get nausea and blotchy itchy skin, pins and needles and tingling. I had leg throbbing and neck itching and facial numbness, difficulty speaking after driving my husband's car to later discover that there were wheat coated peanuts in the driver's door, open. I do not have nut allergies.
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#27 Peaceflower

 
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Posted 12 March 2014 - 05:28 PM

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.

Yes, exactly my point. Doctors know about coeliac disease, but gluten allergy is less widely talked about. Is the genetic testing Mark talked about for coeliac disease? I didn't think it was. I was referring to testing for gluten allergy, which doesn't show up in standard blood and endoscopy testing for coeliac disease, or skin prick testing. Coeliac disease is too widely used to refer to any kind of gluten allergy or intolerance so that people don't even know what allergy means. I said I do not have Coeliac disease. I have had that confirmed. I do however have a debilitating gluten allergy.
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#28 kareng

 
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Posted 12 March 2014 - 05:44 PM

Yes, exactly my point. Doctors know about coeliac disease, but gluten allergy is less widely talked about. Is the genetic testing Mark talked about for coeliac disease? I didn't think it was. I was referring to testing for gluten allergy, which doesn't show up in standard blood and endoscopy testing for coeliac disease, or skin prick testing. Coeliac disease is too widely used to refer to any kind of gluten allergy or intolerance so that people don't even know what allergy means. I said I do not have Coeliac disease. I have had that confirmed. I do however have a debilitating gluten allergy.




There really isn't a " gluten allergy". You might have a wheat allergy? I don't know much about what it takes to diagnose a wheat allergy. I understand that it can be hard to diagnoses food allergies. If you are seeing an allergist and the/ she thinks it is an anaphylactic allergy, then they have prescribed epi pens, I would think?
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#29 Robin Campbell

 
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Posted 08 July 2014 - 06:39 AM

I totally understand!! I know I am very late over a year late! but I came across this article doing a google search for airborne gluten..

I have celiac disease plus a wheat allergy, I hope you have been able to see an allergist recently. I have been having reactions to wheat like this for many years including... headache, ithcing, rash,  tight chest, foggy brain, exhaustion, even to the point my body hurts when im around it for a long period of time. I do not go to restuarants I actually have to quite the nursery at my church because I have been having reactions there. Wheat is in everything! and if you have a wheat allergy you will def. get very sick. Shampoos, lotions, baby wipes, so many things! I actually got so sick on sun and pretty much was exhausted all day yesterday starting to feel better today. I really pray that you got help! I am finally getting insurance and hoping to be able to see someone about a possible gluten ataxia reactions. 

Hope this helps someone out!!! <3 


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#30 Pame

 
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Posted 22 September 2014 - 03:24 PM

I always have issues of tight chest and itchy mouth  and throat in the bread isle.  I just did today, in their wisdom the store has the gluten-free crackers right next to the bread.  I have had issues before I ever turn the corner to the bread isle in a store I have never shopped in so I can't anticipate the bread isle and chaulk it up to anticipation on my part.  I was tested to see if I had a wheat allergy and it came back negative.  Not sure what it is but it seems some other folks have it as well and that somehow gives me comfort that at least I am not crazy.  I asked the manager if it was possible to put the gluten-free items at the end of the cracker isle so I didn't have to be right next to the bread.  They looked at me like I was a crazy woman but oh well I am getting used to that since msg is also a huge problem for me in it's many forms.


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