Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Sick Just By Touching Or Smelling Gluten


CassandraMae1985

Recommended Posts

Gbkl Newbie

Yes it’s real . I also get very sick just smelling bread . I have wheat/gluten allergy . And most people around don’t believe it and think I’m crazy or something but the fact is I didn’t know what makes me so sick for 2 years it was very hard to find out what actually causing it . So definitely  can not be mental .


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gbkl Newbie
(edited)
On 9/8/2013 at 8:09 AM, MarkLevy said:

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

I agree 100% . I also getting sick of smelling bread or pasta and it’s not mental 

Edited by Gbkl
Gbkl Newbie
(edited)
On 6/3/2015 at 1:22 AM, nvsmom said:

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

Edited by Gbkl
  • 3 years later...
Naomi Tucket Newbie

Why do I get sick after using lotion and skin care products with gluten in them?

Naomi Tucket Newbie
On 5/19/2012 at 12:05 AM, Stu said:

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.

I agree because if I use skincare products I will get sick and I’m kind of tired of doctors and people saying that it’s in your head and you can only get sick if you eat it. I have lived with celiac disease for 15 years now and it took ten years for doctors to figure out what was wrong with me and now I’m being told that I can’t absorb gluten through my skin which is not true if they can give you a blood test to find antibodies then it can get into your body if a a patch can be absorbed through your skin and reach your blood stream to relieve your pain then why can’t gluten?

Scott Adams Grand Master
54 minutes ago, Naomi Tucket said:

Why do I get sick after using lotion and skin care products with gluten in them?

Some people with celiac disease are more sensitive than others. Do you have dermatitis herpetiformis? Are you in the super sensitive group?

Naomi Tucket Newbie
On 5/19/2012 at 3:05 AM, Stu said:

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.

Yes I believe you can get sick from touching anything with gluten on it the same thing happens to me yet these doctors keep saying it can’t be absorbed through the skin but it can and that’s why they call it practicing medicine because that’s what they are doing practicing. I was told it was in my head totally blew me off.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Beware Taila gluten-free frozen pizzas

    2. - cristiana replied to cristiana's topic in Related Issues & Disorders
      29

      Ectopic heartbeats - any relation to digestive issues?

    3. - Helen Vajk commented on Lindsay Cochrane's article in Spring 2007 Issue
      2

      The Kiss of Death: How My Romantic Life Suffered after being Diagnosed with Celiac Disease

    4. - Russ H replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,201
    • Most Online (within 30 mins)
      10,442

    Bren88
    Newest Member
    Bren88
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jmartes71
      I just went ti Sprouts today after we dropped off my grandson at home.The brand Talia I almost bought.i was looking forward and saw that it DOES contain and in Itty bitty small sentence,  ( those with sensitive diagetive shouldn't consum.I ALMOST bought, PLEASE READ EVERY LABEL so you don't get glutened!
    • cristiana
      I just thought I'd update this post. My father has had some issues with his heart rythym and we found giving him an electrolyte drink plus a vitamin D supplement with extra calcium containing food (yoghurt) made a big difference, and very quickly. My own problems with ectopic heartbeats started up again with warmer weather so I thought I'd take a leaf out of his book, and now, for the second time, after just one Phizz Electrolyte Drink, and a dose of vitamin D (Fultium D 800 x 4) with a milkshake, my ectopics disappeared within the hour.   Probably the Phizz drink rather than the D with calcium, but maybe it all helped?  Just mentioning this in case anyone is looking for answers.
    • Russ H
      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
×
×
  • Create New...