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

Loss Of Sense Of Smell?


jlinc

Recommended Posts

jlinc Rookie

Hi there,

I've had sinus trouble my entire life. Then, in 1997 or 98 (hard to pinpoint when) I lost my sense of smell almost completely. Now, even when I can breathe through my nose just fine, I can't smell anything but very strong odors, like a peeled orange, vinegar, or bleach.

I was diagnosed celiac in Fall 2003, and I thought that when I finally got gluten-free (which, because I learned only slowly how strict I had to be, took me two years), that I'd get my smell back. But it's never come back.

When I go to my physician, he says I've just got allergies (which, I do - big time) and to take an allergy medication like loratidine. I've done that, but it's had little effect. Often, I'll be able to breathe just fine, but still can only smell the strongest stenches.

Has anyone else had this trouble?

Many thanks for anyone's experience.

Josh.


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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

Yes! Me! :P I haven't had a sense of smell in years. I went gluten-casein free in December and have actually noticed a little improvement. I still can't smell most things, unless like you said they are strong, but I'm finding in the last few months I catch little whiffs of things...like my unscented soap, lol. I'm hoping that it will slowly keep getting better and better the longer I stay off the gluten/casein.

jlinc Rookie

Donna - thanks for replying. I've tried going casein-free for a couple of months, but didn't notice any real change in any symptoms, good or bad. I've pretty much been perfect so long as I assiduously avoid gluten. But if you've had progress after 7 mo's, then maybe I will try it again.

Thank you!

J.

trents Grand Master

Ditto. My wife smells everything. I only smell the very strongest odors. In a way, it is a blessing sometimes.

Steve

azmom3 Contributor
Hi there,

I've had sinus trouble my entire life. Then, in 1997 or 98 (hard to pinpoint when) I lost my sense of smell almost completely. Now, even when I can breathe through my nose just fine, I can't smell anything but very strong odors, like a peeled orange, vinegar, or bleach.

I was diagnosed celiac in Fall 2003, and I thought that when I finally got gluten-free (which, because I learned only slowly how strict I had to be, took me two years), that I'd get my smell back. But it's never come back.

When I go to my physician, he says I've just got allergies (which, I do - big time) and to take an allergy medication like loratidine. I've done that, but it's had little effect. Often, I'll be able to breathe just fine, but still can only smell the strongest stenches.

Has anyone else had this trouble?

Many thanks for anyone's experience.

Josh.

Have you tried seeing an ENT specialist (ears, nose, throat) or an allergist? they might be able to help more than a regular doctor. Good luck!

I have the opposite problem. Ever since my last pregnancy (2 years ago) I have an extremely heightened sense of smell. It's great when someone's making cookies, but most of the time it's the biggest pain...dirty laundry, garbage, sweaty people.....YUCK! I literally gag from the smells sometimes. Now let me clarify that I have not been tested for celiac. I just recently found out that my son is positive, so I will be doing a blood test for me and the other kids for starters soon. I have had so many of the symptoms for so long now that it wouldn't surprise me if I am. Anybody else have this problem? I know pregnant people get a heightened sense of smell, but it just seems like mine never went away.

  • 5 years later...
marjean Newbie

I have this problem, too..I didnt even realize it was from Celiac. It takes the fun out of eating, doesnt it? I am sticking to the gluten free diet..The bloating and stomach cramps are gone, but everything else is the same..along w/ the loss of smell, and now the dermatitis inside my nose..very painful.

CRashster Newbie

I, too, have this. Never really had a sense of smell that I can remember. My wife smells for me. Ever since going gluten free, it's has gotten a bit better, but only a little. I get tired of people asking me if I can taste. yes, I still have tastebuds.

Crash


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



Celiac.com Sponsor (A8-M):



glutentheintolerant Rookie

Perhaps you just have a poor sense of smell? Like some people have poor vision, poor hearing or poor taste. The latter especially applies to furniture.

I've never been particularly good at telling scents apart. My dogs usually fish out things for me, I just follow their noses.

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 Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,154
    • Most Online (within 30 mins)
      7,748

    bobadigilatis
    Newest Member
    bobadigilatis
    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
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.