Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,733
    • Most Online (within 30 mins)
      7,748

    Debbeighe
    Newest Member
    Debbeighe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      You are most welcome, Marie.  Thank you for getting in touch, because this sort of post will be seen by other parents who find themselves in this position, I am sure there are many.   And as I say, in the long run, I am sure your daughter will be sorry for what she said.  I remember having a go at my dear Mum when I was in my twenties about something and then apologising, saying, "I don't know how you put up with me."  I can't remember her exact words but it was something along the lines of, "I used to say things like to my Mum.  Now it's my turn [to be on the receiving end]!"    😂  Although it isn't very nice to be on the receiving end, it is good your daughter feels safe to say these things to you. We look forward to hearing from you again in due course.  
    • Wheatwacked
      Are You Confused About Your Celiac Disease Lab Results? Some people test negative but have a positive biopsy, others test positive but negative biopsy.  This is why it can take years and misdiagnosis of other diseases that Celiac Disease can mimic. The above link is a good read with real life examples. Something I find interesting is that in 1980 or so a new diagnosis was created, Non Celiac Gluten Sensitivity, only 10 years after Norman Borlaug won the Nobel Peace Prize for creating our modern wheat and the Green Revolution.    
    • trents
      @Steve-n-Portland, there is a difference in the requirements to use the label "Gluten Free" and the label "Certified Gluten Free". "Gluten Free" is governed by FDA regulations and has a ceiling of 20 ppm. "Certified Gluten Free" is a labeling convention used by the GFCO, an independent international third party certifying group that uses 10 ppm as its standard.
    • trents
      We have had numerous reports from forum participants experiencing gluten reactions from Trader Joe "gluten-free" products. It seems it's not a good place for the celiac/gluten sensitive community to shop.
    • Steve-n-Portland
      Also, a class action lawsuit was launched in 2024 against Trader Joe's re: their " gluten free" everything bagels. They tested at 269ppm. (Personally, I am not sure they will win. The FDA says that the *ingredients* have to be less than 20ppm for a company to label something "gluten-free."  In order to be certified as gluten-free by the GFCO, the *final product* needs to be less than 20ppm. That said, the lawsuit is arguing that most people read that label and assume the final product is safe for people with celiac. Thus, many people were made sick. And being sick can have costly consequences in regard to work or school, depending when one becomes ill.)
×
×
  • Create New...