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

Phantom Smell


Claire

Recommended Posts

Claire Collaborator

Has anyone on this forum experienced 'phantom smell' otherwise known as 'olfactory hallucination'? This is thought to be a sign of partial seizures. I have had this for many years though it is infrequent - often even years between episodes. An episode consists of brief sensations of a smell that is obviously not actually present. These last seconds and occur every few minutes or sometimes at longer intervals. Episodes may go on for a few days - as long as a couple of weeks - then the sensation disappears to come back some other time. Rather weird.

I am lucky - what I smell is not unpleasant (I cannot identify it). Some people have actually become suicidal because the smell was so intolerable - making it impossible to eat or sleep.

If anyone out there has experienced this I would like to hear from you. I have never spoken with anyone else with this bizarre symptom. Claire


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



Celiac.com Sponsor (A8-M):



skbird Contributor

This doesn't quite fit me but I have had several episodes of smelling something concrete then smelling it everywhere for the next day or so. Worst case was when we saw a cat that got hit by a car right in front of us, and for the next two days I could smell it at the oddest moments. In fact, during that time I was undergoing diagnosis for bipolar (which in the end I wasn't) and my doc thought I was having psychotic episodes and put me on a med for it! (risperidol).

This happened again recently, I can't think for the life of me what it was, but something like a food I'd eaten, and I could smell it repeatedly for about two days in the oddest moments.

Stephanie

cgilsing Enthusiast

I myself have not had experienced phantom smells, but I have an epileptic friend who claims to always smell cucumbers before she has a seizure. You mentioned partial seizure in your post....what is a partial seizure? Do you have any history of epilepsy? It is a blessing for my friend too, because when she smells cucumbers she knows to get to somewhere safe. That's some really interesting stuff!

Canadian Karen Community Regular

That reminds me of a commercial that used to be on here in Canada. It is one of our "Part of our Heritage" series of commercials. It had a woman who always smelled burnt toast just before a seizure came on, and in the commercial it showed a Canadian brain surgeon operating on her brain and touching different parts of her brain until she identified that she smelled burnt toast (yep, she was wide awake!!! :o ). He then corrected or removed that part of her brain.....

Karen

kvogt Rookie

For a few months prior to diagnosis, I had the experience of getting whiffs of an amonia-like odor. Went away a few months into the diet.

jknnej Collaborator

I get that when my reflux is acting up badly for some reason. Or when I get a sinus infection; then it's really bad. Stuff smells foul and sometimes I even ask people if they smell that. They think I'm crazy!

Carriefaith Enthusiast
Has anyone on this forum experienced 'phantom smell' otherwise known as 'olfactory hallucination'? This is thought to be a sign of partial seizures.
I would talk to your doctor about this. This may be a sign of a seizure which is a complication of celiac disease. Open Original Shared Link

That reminds me of a commercial that used to be on here in Canada. It is one of our "Part of our Heritage" series of commercials. It had a woman who always smelled burnt toast just before a seizure came on, and in the commercial it showed a Canadian brain surgeon operating on her brain and touching different parts of her brain until she identified that she smelled burnt toast (yep, she was wide awake!!! ohmy.gif ). He then corrected or removed that part of her brain.....
I remember that commercial too :) Those commercials can be educational!

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



Celiac.com Sponsor (A8-M):



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. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    4. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,809
    • Most Online (within 30 mins)
      7,748

    Ello
    Newest Member
    Ello
    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

    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
×
×
  • 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.