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

"tasting" Gluten


Brrrandy

Recommended Posts

Brrrandy Rookie

I noticed something really interesting lately-- if I eat something that contains gluten now, I can often tell while chewing it. It does not have a particular metallic or bitter taste to me, but (this is weird) it almost feels "dead" in my mouth. Does anyone else have this, or have other gluten "tasting" experiences? It's such a weird thing to say, but if I eat a gluten free cookie, it's as if the flavors come alive in my mouth while chewing, but if I eat a cookie with gluten, I can definitely tell because the flavors don't come alive, and it's like they just sit there in my mouth, dead.

That sounds so bizarre when I actually say it.

I had this experience again today with a free kielbasa sample at my local deli. I had no idea it would have gluten, but after putting it into my mouth I swallowed a tiny bit but then spit it out because I'm beginning to completely trust the "dead" sensation. A few minutes later, my stomach started to gurgle. Looking it up at home, I learned that many kielbasas do indeed contain gluten.

So weird.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

I haven't noticed this, but I have to be super careful because I get so sick, so I don't think I HAVE had any major gluten cc, you know?

However, one thing I remember reading about a few months back was a study where they swabbed a little gluten inside the check and checked for anti-bodies at certain intervals. Within a few minutes, celiacs were already producing antibodies in response to the gluten. I could totally believe the body would have a reaction to gluten in a way you could detect.

Brrrandy Rookie

I occurred to me after I posted that maybe it has something to do with saliva enzymes breaking down the food, so I looked it up.

Apparently researchers at Boston University and Harvard might be one step ahead of me? They've found some enzymes in saliva that seem to break down gluten as you chew.

Could what I'm experiencing be the lack of an enzyme to break down a major component in the food, i.e. gluten? Maybe that would create the sensation that the food is just "sitting there" in my mouth-- it's not being broken down by my saliva.

It's crazy to think about, but it's definitely the coolest explanation I've encountered :)

Brrrandy Rookie

A newspaper summary of the findings can be found here:

Open Original Shared Link

And the actual journal article is here: Open Original Shared Link

if anyone is interested

  • 1 month later...
mamabear272 Explorer

I have noticed the funny taste too. I can also smell it too though. There is a distinct smell I smell when my son has just eaten something with gluten in it. I also tasted it this weekend when I was eating something that was supposedly gluten-free that I don't think was. I think it had gluten cau I'm sicker than a dog right now and an emotional wreck (all my symptoms from beforenI went gluten-free). I suppose I sound looney that I can smell and taste it. Lol

Archived

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

  • 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. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,376
    • Most Online (within 30 mins)
      7,748

    Citydweller
    Newest Member
    Citydweller
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.