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 Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    2. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

    4. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

    5. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

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

    • Total Members
      133,167
    • Most Online (within 30 mins)
      7,748

    Coldwpg
    Newest Member
    Coldwpg
    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

    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
×
×
  • 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.