Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,551
    • Most Online (within 30 mins)
      7,748

    spencercoleadams
    Newest Member
    spencercoleadams
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.