Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Another Symptom I Didn't Know I Had

phantom smells

  • Please log in to reply
28 replies to this topic

#16 greenbeanie

greenbeanie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 289 posts

Posted 10 June 2013 - 05:34 PM

I can smell the TV too, and I hate it. My sense of smell is ridiculously sensitive in general, and it's very annoying. People used to think I was making it up because it seemed so unlikely that I was actually smelling the things I claimed to smell, but the smells have been verified enough times now that I know it's accurate. For example, I'd comment on the smell of toast when it was being cooked three floors away, and others would laugh - and then the smoke detector would go off five minutes later because someone really did burn toast down below! My mother and daughter both have very acute senses of smell too, so maybe it's just a random genetic trait. Or maybe it will lessen once my testing is complete and I go gluten-free. That would be wonderful!
  • 1

Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


Celiac.com Sponsor:

#17 surviormom

surviormom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 171 posts

Posted 11 June 2013 - 05:40 AM

I can smell the TV too, and I hate it. My sense of smell is ridiculously sensitive in general, and it's very annoying. People used to think I was making it up because it seemed so unlikely that I was actually smelling the things I claimed to smell, but the smells have been verified enough times now that I know it's accurate. For example, I'd comment on the smell of toast when it was being cooked three floors away, and others would laugh - and then the smoke detector would go off five minutes later because someone really did burn toast down below! My mother and daughter both have very acute senses of smell too, so maybe it's just a random genetic trait. Or maybe it will lessen once my testing is complete and I go gluten-free. That would be wonderful!

We first noticed this when I was pregnant, because smells made me sick.  But, I can relate.  Me too, big time.  My husband never smelled the garlic on me or the vinegar, but I sure could.  I have always wondered what causes that heightened sense of smell.


  • 0

Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#18 pricklypear1971

pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts

Posted 11 June 2013 - 05:52 AM

I have a bizarrely heightened sense of smell and I often ask the hubs"don't you smell THAT?"..meaning dampness, musty smell, burning, whatever.
He (of the stuffy nose) says "nope".

I would not describe it as worrisome, but maybe bothersome. then again, when it is something pleasant, I get an extra boost of it.

I just have an acute sense of smell.... also, I am a supertaster...also my hearing is beyond acute..... I am like a damn bat.

This made it difficult for the students in my class when they whispered anything I was not supposed to hear. :)

Not sure it is a celiac symptom...or a post- DX "better sense of everything sensory" that was once dull by illness or just "me". Could also be a chemical sensitivity? Could be anything.

None of us are doctors and it someone has a scent allergy that makes them nauseous or other symptoms that are concurrent, they should seek medical attention.


I've developed a theory that since my body was so damaged, it heightened other senses to substitute for the damaged "parts".

Sometimes that was good, sometimes it wasn't.

I think the body compensates in some weird ways. Pretty amazing, what the body can do, though.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#19 Ksee

Ksee

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 103 posts

Posted 11 June 2013 - 10:45 AM

I didn't realize some of you were talking about this. I can hear, feel and smell things others can't but it is more like outside the range of what most people can detect. When thunderstorms are fading there is a high-pitched, static sort of sound in the clouds no one else seems to be able to hear. I am more bothered by loud noises and bright lights than anyone else I know and those can set off a migraine if I'm not careful.

As a nurse I could find pulses most people could only find with the Doppler after I had marked them. It caused lots of confusion with documentation because pulses are recorded as either felt, heard, or absent. What I could feel the previous nurse had recorded as absent and the next nurse recorded as heard only because I marked on the skin where to listen. The reason for documentation is to record changes with the patient, not the nurse, but each nurse has to document what they actually observed.... 

When someone has more sensory input than other people the world can be overwhelming. They are bombarded with things most people don't have to deal with. When this develops in children and they withdraw to protect themselves, we call it autism. Autism isn't always a disease in itself but many times a symptom.

There isn't much research to connect hyper-acuity with celiac except the connection to autism but autism is a spectrum from non-communicative to high-functioning and it seems those of us lucky enough to be able to deal with the world. Keep this in mind and cut yourself some slack. It's not your imagination and your not being cranky. Loud noise and bright light is painful. I know.

This goes both ways. There are people who can't see what most people in the world can. I've run across a few people who don't realize the light changes color with the seasons. Painters use stark whites and blues for winter light and orange for fall light. Mention that to some people and they look at you like you have grown an extra eye in your forehead. Changes in light with the tilt of the sun is measurable and obvious to most of the world, but still some people just can't tell the difference. 

Philosophy says that perception is reality, meaning we can change our reality, but I believe the opposite is also true. Our reality includes perception most people don't have and don't understand, but is still quite real.


  • 0

#20 Gemini

Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,120 posts

Posted 11 June 2013 - 01:14 PM

Gemini

A few weeks ago I replied to someone in stage two kidney failure. In her case it was because of protein in her urine from lymphedema she was born with. I hope she is doing well. Starvation to the point that the body begins to consume itself for the energy to live can also result in ketosis, and then kidney failure. 

The Adkins diet and severe restriction of carbohydrates which are the body's main source of energy, forces the body into ketosis which means burning protein for energy. This is always a problem because Ketones (acetone) are difficult for the body to dispose of. It spills over into other body systems like the respiratory system and is blown off, so there is a fruity smell like diabetes or alcohol. It is the same molecule as the acetone in nail polish and paint remover. A small amount can be tolerated but the more there is the more toxic it gets.

I know of several people who have put themselves into kidney failure this way. It is not harmless and the fact that so much protein (a large particle that blocks renal tubules), and resulting by-products of metabolism, Ketone, needing to be excreted by the lungs proves dangerous levels are present proves that. 

I know there are many websites saying otherwise but those are written by people without credentials, with no education to back up their claims or without morals. It isn't your fault people are trying to make money at the expense of your life and health. Especially with Sjogren's Syndrome which can cause so much damage of it's own. Find someone reliable and credible to listen to. You may not want to hear this from me, but whether it makes me popular or not, I am going to say what I know. I am not going to tell you something that can damage your health or worse.

I am not sure if you read my post correctly, Ksee, but I am well aquainted with ketosis.  Ketosis occurs when you start burning fat, after restricting carbs in your diet. It helps prevent the break down of muscle, which will eventually occur if you go long enough without nourishment.  As I was suffering from advanced malnutrition upon diagnosis, I am more than well versed in this.  The point I was trying to make was that those who follow this type of diet (Atkins) tend to have an acetone smell to their breath, due to the fat metabolism when severely restricting their diet.  The post was about smells.  I am also more than familiar with acetone, as I work in a laboratory and use acetone frequently in my work.

 

I am not one of the many who can't tell the difference between a good source or some kook on the internet trying to sell snake oil. I also am well versed in AI diseases and don't need "the experts" to lecture me on Sjogren's.  I ended up diagnosing myself and then when I switched to a new PCP and told her I had it, she tested me and surprise, surprise....I had Sjogren's.  In fact, I figured out all my AI problems because the medical profession failed me miserably.  I ended up testing positive for all of them that have tests but it was no surprise to me. This isn't rocket science.  We can all read the same books as medical people.  If I had put my enitre trust into the AMA, I would not be here today...they would have killed me.  I have no problem with you trying to educate people but I do fine on my own, with little intervention from the AMA.....only when needed.  In fact, I am doing better than most because I haven't let them ply me with pills.

I also don't obsess about my health.....there is no point to that.


  • 0

#21 Ksee

Ksee

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 103 posts

Posted 11 June 2013 - 01:33 PM

I'm not wanting to argue, but I wouldn't say it if I didn't know it:

 http://www.webmd.com...bohydrate-diets


  • 0

#22 Ksee

Ksee

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 103 posts

Posted 11 June 2013 - 01:46 PM

I just re-read my post and it seems I did write protein where I meant to say fats. I apologize for the confusion. Please read the article I linked though, I took the time to type all that out because I was concerned. I have had friends who ended up in kidney failure because of the Adkins diet. I don't want that to happen to you. 


  • 0

#23 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,446 posts

Posted 11 June 2013 - 02:10 PM

, I am doing better than most because I haven't let them ply me with pills.

I also don't obsess about my health.....there is no point to that.

 

This. Is. Me. 

 

I take no meds (before DX, I was on a dozen or so that did nothing for me) and I have no faith in doctors.

 

I am lucky I have one celiac-savvy GI now. If not for my own persistence, I'd be dead now.


Edited by IrishHeart, 13 June 2013 - 11:21 AM.

  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 eers03

eers03

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 221 posts

Posted 11 June 2013 - 02:13 PM

Ksee you are spot on with this.  When I first went gluten-free cut out all my carbs in trying to cut out gluten--not intentionally, I just didn't know what I was doing.  I absolutely had some ketosis like symptoms.  I had no weight to give and when I worked out, my body just fed off of itself.  It was scary.  I don't have the issue now but the ammonia smell, the anxiety, heart palpitations, my body was screaming.  


  • 0
Diagnosis 11/2012

#25 Ksee

Ksee

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 103 posts

Posted 11 June 2013 - 02:28 PM

There is also the smell of acetone that can occur when you are eating low carb.  If you are burning fat, after cutting way back on carbs, you'll produce ketones and many times, your breath will smell like acetone.  This is not a bad thing and is common for those on an Atkins type diet.  

Thanks Irish, I am not obsessed about anyone's health. I like to be diplomatic. But when I see this and know that six hundred something people have read the thread at this point I think about more than one person and offer caution where it is needed. If someone can show my comments to be incorrect I would carefully read any information they have.


  • 0

#26 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,446 posts

Posted 11 June 2013 - 02:42 PM

Thanks Irish, I am not obsessed about anyone's health. I like to be diplomatic. But when I see this and know that six hundred something people have read the thread at this point I think about more than one person and offer caution where it is needed. If someone can show my comments to be incorrect I would carefully read any information they have.

You are responding to GEMINI's post....Not mine....  :)just so you know.

 

 

 

*****This post has been edited  after a PM conversation with Ksee for clarification.


Edited by IrishHeart, 13 June 2013 - 12:52 PM.

  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 Gemini

Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,120 posts

Posted 12 June 2013 - 07:18 AM

I just re-read my post and it seems I did write protein where I meant to say fats. I apologize for the confusion. Please read the article I linked though, I took the time to type all that out because I was concerned. I have had friends who ended up in kidney failure because of the Adkins diet. I don't want that to happen to you. 

Ksee.....again, you misunderstand......where did you get the impression that I was following the Atkins diet?  The Atkins diet is a medical diet for those who are facing bypass surgery and need to drop weight FAST.  Somehow, it made it's way into mainstream America and people loved it because it does make you lose weight fast....but it's not the type of diet you can follow long term.  Only those who are seriously overweight should even consider it, not people who are suffering from Celiac Disease who are classic Celiacs like myself, the skinny malnourished kind.  I started to show signs of ketosis the week I hit the wall with celiac because I had no body fat left and was burning muscle.  It's a good thing I was able to figure it out because the doctor I went to see that week totally blew me off.  I was dying and she blew me off.  I was able to figure out the problem, ask for the blood work and be on my way to a solid diagnosis.

 

I made the comment that people who follow the Atkins diet, long term, very often develop really bad breath and smell like acetone, because of ketosis.  I never implied that people should follow the diet or that I myself follow the diet.  I do not think it a good idea to cut carbs from your diet, unless you have an intolerance to grains in general.  I certainly don't because I weight train. 

 

I hope that I have made things clearer for you.  I am not arguing either....just not quite sure where your posts were coming from.


  • 0

#28 Celiac Mindwarp

Celiac Mindwarp

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,167 posts

Posted 12 June 2013 - 01:45 PM

I had a friend who was diabetic and I could smell on his skin when he was heading for a fit. Freaked him out though.

 

I have very sensitive smell and hearing too, I wonder if there is a link.

 

I found mirror touch synesthesia helped to explain some of it, but I got that from a book and don't have links I'm afraid.

 

I don't mind smelling the flowers more, but train, plane and bus journeys can be a bit hairy with super sensitive smell. I lived on a main road, and the noise nearly drove me insane.


  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#29 eers03

eers03

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 221 posts

Posted 13 June 2013 - 05:49 PM

Gemini,

 

What you described was my exact problem.  I was the skinny malnourished celiac.  Because I didn't know how to cut gluten the right way I dumped all my carbs with the wheat!  Whoops!  It was scary.  I know I'm all over this thread but these were the symptoms that freaked me out the worst.  So glad to have it corrected.


  • 0
Diagnosis 11/2012


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: