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Sick Just By Touching Or Smelling Gluten


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23 replies to this topic

#16

 
Stu

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Posted 18 May 2012 - 11:05 PM

There are definitely different levels of sensitivity to gluten.

True story: I go to the doctor's office. The nurse/receptionist hands me a pen and clipboard, and I take a seat in the waiting room to fill out the forms. Within a minute or so, I get a nasty tin-foil taste in my mouth and my lips begin to burn. First stage of gluten exposure? Nah... Couldn't be. I'm in a DOCTOR'S OFFICE for cryin' out loud. Must be my imagination or something. I continue to fill out the forms. Then, I start to cough and gag - DEFINITELY gluten exposure, but where and how is it possible? That's when I look around and see the nurse/receptionist who handed me the pen and clipboard sitting at her desk noshing on a baggie full of banana bread. Geez! At least she could have wiped her hands off before she handed me the forms, that's just good hygiene! I quickly finish filling out the forms and hand them in. The nurses all back away from me because the reaction is now so strong they are convinced I have the dreaded Swine Flu... I excuse myself, then go to the bathroom to throw-up...
I explain this to my doctor when I see him. He scoffs, and tells me I have Acid Reflux... I never went back for the follow-up.

The dermal immune system in your skin is the first one to react, and it happens so quickly and effectively that researchers believe they can improve the efficacy of vaccines by mimicking that response as the vaccines are administered. For this reason, there is no doubt in my mind that an anti-gliaden immune response can be initiated the moment someone simply comes into contact with a source of wheat gluten. It has happened to me many times, just coming into contact with bread crumbs or an empty pizza box. It can be a real pain in the neck, but on the positive side I never accidentally ingest wheat gluten when I can "feel" it before I'm at risk of becoming seriously exposed to it.
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#17

 
MarkLevy

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Posted 07 September 2013 - 01:59 PM

I just want to start out by saying hello to everyone. I'm new here and just signed up today.

My husband was diagnosed with Celiac Disease a few years ago and he has been sticking to the gluten free diet and i do all i can to make sure the gluten we have at home NEVER comes into contact with his food, pots, pans etc. but we have 2 small children who havent been showing any signs of having a gluten sensitivity (for now but we get their blood checked every few years) and so they have their snacks that contain gluten. My husband has noticed that if he even TOUCHES any crumbs or pieces of their snacks laying around (kids are messy) that he gets sick. Also if we happen to be over a family members house and they are cooking anything with gluten in it like pasta or bread, he also feels very sick. Is it possible for someone to be SO sensative to gluten that even if they DONT eat it and just touch or smell it they can get sick?

We are still fairly new to all of the rules since he was only diagnosed 2-3 years ago and ive heard it takes a long time to get everything perfect. He still isnt feeling 100% even though he's sticking to a gluten free diet and we are trying to figure out why. Thank you for listening everyone.

dont let anyone tell u your nuts i have the same problem. gotten so bad wife or kids make toast and im sleeping i awaken so violently sick almost ten fold what happens if i eat gluten. i got so i had to sell the deli/catering company i had...couldnt walk into the front door of my own restaraunt. i even tried uising an epi pen / benadryl / albuterol when i had an attack that a doctor scarcastically gave me a perscription for all the while telling me i was nuts and its medically impossibleto have a reaction from smelling it as he said if that was the case you think the  airlines would give u peanuts...people with peanut allergies dont drop from smelling peanuts....so much ignorance around soo many educated people...i wish i had a medical answer or reason for you all i can sa is your not alone and trust your body


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#18

 
MarkLevy

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Posted 07 September 2013 - 02:09 PM

has anyone ever heard of cocaine? ever see a movie they are all wearing masks? ever walk into a lab where cocaine was being made?of probably not but if you did without a mask on you would not only get high your blood would test positive......how is walking down the bread isle for an extremly sensitive celiac/non celiac with gluten intolerence any different?? time and time again (thank god...ok not thank god as i dont want others suffering but thank god as now i know im not the only one) but thank god im reading all these posts saying i live near a wheat farm and in peak season im glutened every day....i cant walk down the bread isle....i cant walk into a pizza place....none of you are crazy!! i owned a successful deli/catering company i sold because going to work was making me so ill i was positive i had ms...what was it...airborne gluten....i dont care what any professional tells me i know what my body says


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#19

 
shadowicewolf

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Posted 07 September 2013 - 02:52 PM

You've bumped an old thread. The topic starter hasn't been here in quite some time either.


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#20

 
Scarletgrrrl

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Posted 10 September 2013 - 06:03 PM

My partner baked a packet mix cake (with gluten in it) and I couldn't stop sneezing smelling it cooking.


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#21

 
BenSmart

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Posted 02 June 2015 - 04:24 AM

Very useful information members. 

 

I would like to share about my wife's issue with gluten. None of the the tests are positive for Gluten Allergy or Celiac.

 

Initially she started feeling sick and we do not know the reason for sickness. Later we linked Gluten to her sickness with our own observation. Later we figured that gluten smell also makes her sick. Recently she was healthy and we were shopping. She was 100% fine till we reached the checkout of SAMs club and she is sick by the time we reached the exit gate. Because there was restaurant where they sell and serve pizza to customers. She doesn't have clue that the restaurant is going to make her sick. So its not psychological.

 

Her symptoms:

 

Instantly she felt walking from checkout to exit gate

1. Chest tightness and slight pain

 

within 2-3 minutes

2. Severe cough from deep stomach and clear mucus

 

Within 5 minutes

3. Nausea feeling

 

Within 30 minutes

4. Severe body pains and muscle cramps

 

Next 24-36 hours 

5. Severe Fatigue... 

 

After that she is normal person. 

 

She has same symptoms when she eats any wheat / gluten product also. Sometimes she will be suffering with fatigue for 72 hours for any gluten contamination. 

Within those 72 hours she looses about 2-3 pounds weight.

 

Our PCP thinks this is psychological and we are crazy. She doesn't believe what we are saying. 

 

Question: Do we need to see Immunologist now?

 

 

 

 

 

 

 


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#22

 
nvsmom

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Posted 02 June 2015 - 07:22 AM

If she is not eating anything while there, or walking through a flour dust cloud, then it is most likely not celiac disease or non-celiac gluten sensitivity (NCGS. for which there is no test.  That disease and sensitivity are triggered by consuming gluten, meaning it has to get inside and onto your mucus membranes.  Celiacs can handled normal baked goods without any risk of being affected because gluten can not pass through our skin - it is much too large to do that.

 

Wheat allergies can cause a reaction without eating wheat, but the symptoms you list do not really sound like a histamine (IgE) reaction.  I do know that allergy testing is not 100% reliable so it is possible to get false positives and negatives on those tests.

 

A psychological reaction is not crazy.  If that is the issue, that is a real issue!  Just because the brain is controlling a reaction does not make it any less real than when another part of the body triggers the reaction.  Some celiac disease symptoms, like neuropathies, can be said to be all in the head, but it doesn't make them any less horrible or debilitating.  KWIM?

 

For instance, some doctors believe that some asthmatic reactions are psychological and linked to anxiety. This is not a widely accepted belief yet but it makes me wonder... I had a childhood friend with severe asthma, who got to the point where he was off to the hospital if he saw peanut butter sandwiches from across the room.  His symptoms were horrible but I wonder if part of that was psychological since he was over 10 feet away from the peanut butter and was fine until he knew it was there.

 

So she was tested for celiac disease?  Did they run the full panel?  Some doctors only run one or two tests, which is a problem since some of those tests can miss a significant minority of celiacs.  These are all of the tests:

ttG IgA and tTG IgG

DGP IGA and DGP IgG (deaminated gliadin peptides)

EMA IgA

total serum IgA - control test

AGA IgA and AGA IgG - (anti-gliadian antibodies) -older and less reliable tests largely replaced by the DGP Test

endoscopic biopsy - 6+ samples taken

 

The blood tests require the patient be eating gluten in the 2-3 months prior to testing or you run a strong risk of getting false negative results.

 

Some doctors, and naturopaths, run IgG based food sensitivity tests, but those are not overly reliable and are not yet widely accepted.  They are not a reliable test for NCGS - only a positive response to the gluten-free diet is thought to be diagnostic of NCGS

 

She could try genetic testing too.  97% of celiacs have the DQ2 and /or the DQ8 gene(s), although you need to remember that 30% of the world also have those genes.  If she has the genes, she has about a 1 in 30 chance of being a celiac.  

 

Make sure she has had the testing done properly. If you are certain it is a gluten sensitivity and the tests were definitely a negative, then she may have NCGS, and staying gluten-free is all you can do.  

 

... Reacting to the smell of gluten sounds psychological to me though.... I get anxious in the bread aisle too, even though I know I am safe, so I know a psychological reaction is possible.

 

Best wishes.


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#23

 
BenSmart

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Posted 05 June 2015 - 06:24 PM

Thanks NVSMOM for your input.

 

Fowllowing tests were done  ... NONE came positive.

 

ttG IgA but not tTG igG.

Video Endoscopy (Upper GI)

Vitamin D-25 Hydroxy

Vitamin B-12 Level

Hematalogy Hemogram

Serum Iron & Calcium

Barium Swallow

 

Walking through bread isle is really true and I observed how much she suffered. Also when my kids heat Pizza slice in microwave, she gets sick too. So we totally banned gluten products into home. 

Handling situation is very tough when going out to shopping or doctor office or testing facility.

 

 

 

total serum IgA - control test

AGA IgA and AGA IgG - (anti-gliadian antibodies) -older and less reliable tests largely replaced by the DGP Test

endoscopic biopsy - 6+ samples taken


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#24

 
nvsmom

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Posted 06 June 2015 - 07:33 AM

She only had one celiac disease test done, and that test, the tTG IgA, can miss up to 75% of celiacs.  Plus she did not have the total serum IgA done, which is a must for determining if the IgA based celiacs tests (tTG IgA, DGP IgA, etc.) are accurate.  Approximately 1 in 20 celiacs is deficient is IgA (compared to approx. 1 in 700 of the regular population) and those people will have false negative IgA based celiac disease tests (ttG IgA, etc) and must rely on the IgG based tests (ttG IgG, etc) and the endoscopic biopsy.

 

If she is interested in a diagnosis, she should get the tTG IgG, DGP igA and IgG, EMA IgA or IgG, and possibly the AGA tests.

 

Although she had an endoscopy done, unless she had biopsies taken (6 or more), she did not have a celiac disease test done.  It is very rare for a celiac's damage to show up visually. Very rare.  I've been posting for about 3 years here, and I've only seen 2 or so people who had visual damage that was identifiably celiac.  At most, celiacs will just have some red areas when looked at, that's it.

 

If it is celiac disease, your kids will have to be tseted every two years, or as soon as symptoms develop, for the rest of their lives if they continue to eat any gluten.  It's a genetic disease so if their mom doe have it, they have somewhere between a 1 in 10 to 1 in 22 chance of developing it.  The same goes for her siblings and parents.

 

I'm sorry that she is having such a tough go.  Don't discount anxiety as a cause though.  Here are some symptoms of anxiety (which is a very common symptom of celiac disease and NCGS):

 

What Are the Symptoms of an Anxiety Disorder?

Symptoms vary depending on the type of anxiety disorder, but general symptoms include:

  • Feelings of panic, fear, and uneasiness
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Heart palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension
  • Dizziness

I took that from here: http://www.webmd.com...xiety-disorders

 

A celiac will not getglutened walking by the bread aisle or smelling pizza.  It just isn't possible.  A celiac with anxiety as one of their symptoms could have those symptoms of anxiety when exposed to a stressful situation, like worrying about gluten in a store when the knowledge that it can't hurt you is not fully internalized.

 

I completely believe you that she is having horrible symptoms that may be due to celiac disease or non-celiac gluten sensitivity (NCGS) but I find it highly unlikely that she is getting glutened by smell.  The only time that is truly a risk is if she is using flour to bake and the flour settles onto food or food prep surfaces.

 

Do be aware that symptoms like anxiety (if that is what it is) can be one of the slower symptoms to improve.  It could be a good 6 months gluten-free before she starts to notice improvements in that... Anxiety is a real medical problem and not just in her head.

 

I hope she's feeling better soon.


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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