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

Gluten Through Touch

lub2bmom

By lub2bmom
in Dermatitis Herpetiformis

Recommended Posts

lub2bmom Apprentice
lub2bmom
Posted

How many of you believe you can have a reaction from touching a product that has gluten in it? Seems to be a controversial topic ... some say yes, some say no. I know from my own experience that I believe, yes.

Most Recent Example: I live in Green Bay, and yesterday as part of helping out my son's school, I worked a concession booth at the Packer Game -- I was working the cash register which meant I was also pouring/serving beer to patrons that ordered it. Not being the most savvy beer pourer, i had many times where the foam spilled over the cup and onto my hands. By the time I got home I could see the hives starting all over my hands including the palms of my hands (ugh, the worst!)... and by 11pm last night I was crawling out of my skin -- hives all over my hands -- i managed to scratch myself to sleep last night for a few hours before waking back up with itching and painful hives form all the scratching - ended up putting my hands in ice water to numb the itching so I could go back to sleep. This morning my hands were so dry/hurting from the scratching it was unbelievable. I think it directly correlated to the beer exposure.

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

I have the same reaction! If I touch a crumb of wheat on the counter at work, my hands immediately begin itching and hives appear on both forearms that last about two days. Studies are desperately needed in this area--there is no medical literature that I'm aware of that describes this type of reaction to touching gluten. Also, I didn't used to react like this--it only began happening a few years ago (I've been gluten free for eight years). I, too, would like to know if others experience difficulties touching gluten.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I develop hives from touching it too. However I found out this year I have an allergy to wheat in addition to the auto-immune reactions when I ingest it. So if you have hives (not to be confused with DH) you may want to get allergy testing done. Benedryl helps with the hives but it makes me sleep.

ETA: I also did not start having this reaction (hives) until after I went gluten-free.

lub2bmom Apprentice
lub2bmom
Posted
  • Author

I am positive mine is DH/allergy to gluten - i have seen doctors for everything under the sun -- from cancer to lupus to saying the hives and rashes came from my tonsils being enlarged. None of them even touched on the possibility of a gluten allergy. The percent for a accurate results showing confirmed DH is not as high as I'd like in order to spend insurance money (it's out of pocket for me for the next 1000.00 dollars) at this point to get a testing done. The remedy to DH is gluten free -- iodine free also in my case -- so at this point, I have been gluten free almost 3 months and the hives went away. My body is the best proof I have vs spending the money at this point to get a test done to confirm what is already working -- i hope that makes sense? I literally can make a PPJ for my son and get hives within a few hours afterwards. I've also found if i eat anything with gluten, by the next day i have a patch hives. The nice thing is since being gluten free (minus the few mistakes obviously that i had a breakout) the hives are less intense and do not last as long as prior. The exception being the beer experience. But i had a LOT of exposure on my hand of it as I found I am horrible at pouring without a ton of foam. Opps! :-) I was a pro by the end of the half time though!!:-) I also attend the celiac group in my area and everyone i showed it too agree -- looks very much like DH. In short: i do what works and that is enough for me! Believe me -- going gluten free has saved my life -- i was going to go crazy prior not understanding why no one could help my hives i had for 6 years!

I read online yesterday someone who had a good article showing that it is possible for gluten to affect someone via touch but i can't seem to find the page. It made a lot of good points and sense. If i can find it i will definitely post it!

itchy Rookie
itchy
Posted

In general, I don't think anyone should assume ahead of time that physical contact with wheat will either cause a reaction or not cause a reaction.

Results are too variable among people.

For my part, I haven't detected any direct response to touching wheat products or even being in grain dust, in my occasional work in the grain industry.

But I accept that contact will cause a reaction with many other people.

We need some controlled studies to answer these questions.

lovegrov Collaborator
lovegrov
Posted

There's a difference between a topical allergic reaction and celiac or DH. I don't think anyone would deny that someone who is allergic can have a reaction to touching wheat.

I had DH for 20 years before I was diagnosed with celiac. Blisters, itching, the whole thing. I have absolutely no reaction whatsoever to touching gluten, although I do it as little as possible because I don't want to chance accidental ingestion.

richard

lub2bmom Apprentice
lub2bmom
Posted
  • Author

I have experience both -- digesting gluten and touching gluten. Both times, i broke out in hives. :-(

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

Celiac.com Sponsor (A8-M):


Di2011 Enthusiast
Di2011
Posted

So poorly understood and researched it is..

Disclosure: I am "officially" undiagnosed.

I have spoken to my boss, two weeks ago, and I asked to be removed from the bread/toast jobs unless absolutely necessary. It has made a big difference to my "undiagnosed" Celiac/DH. I don't choke and cough my way at work so much any more.

My 9 y/o son handles his own breakfast and school lunch now (which involves bread etc) and has been doing so for about two months. This has made a big difference to my gluten inhaling/handling.

My new principle is: "" What goes in must come out ""

If it goes in the mouth it comes out.

If it goes in the pores it comes out.

lub2bmom Apprentice
lub2bmom
Posted
  • Author

Sometimes our bodies know best .... Do what works!! :-)

lovegrov Collaborator
lovegrov
Posted

I absolutely agree with getting away from the bread/toast jobs because there's just no way to avid inadvertent gluten, but you definitely were not absorbing bread or toast through your pores or skin. It's simply not possible.

richard

weluvgators Explorer
weluvgators
Posted

I have spoken to my boss, two weeks ago, and I asked to be removed from the bread/toast jobs unless absolutely necessary. It has made a big difference to my "undiagnosed" Celiac/DH. I don't choke and cough my way at work so much any more.

These symptoms sound like possible wheat allergy issues. We have learned the hard way that our wheat "allergy" issues can as serious (if not more so) than our "celiac" issues. Please consider consulting with an allergist to evaluate your symptoms. I think that the celiac community sometimes overlooks how serious the wheat allergy aspect can be for some! The description of your symptoms sound a bit like possible asthma issues to me, and asthma can be deadly, much more quickly than celiac!

Our family has both - celiac and wheat/gluten allergy. We have found that the super sensitive community is a fantastic resource in helping us maintain improved well being. Three out of four of us require Allergy Action Plans for incidental allergen exposure.

And we also have too much experience with hives and angioedema. Our skin issues have presented from both contact and ingestion, so it is best to remember that everyone experiences these things a bit differently. Even in our own family, we have individual reactions . . . and genetic makeup. We are a family that takes conservative measures in protecting ourselves from wheat and gluten exposure - we have found it absolutely necessary with our dual allergy / celiac diagnosis.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      43

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
    4. Scott Adams
      - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate...
    5. Scott Adams
      - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a h...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,093
    • Most Online (within 30 mins)
      7,748
    Susanne G
    Newest Member
    Susanne G
    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

    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Cold/flu or gluten poisoning?

      By Scott Adams · Posted

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.