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Another Symptom I Didn't Know I Had

phantom smells

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28 replies to this topic

#1 bartfull

 
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Posted 06 June 2013 - 03:12 PM

I just read on another thread that someone smelled amonia sometimes. Well that made me realize that it's been a long time since I smelled automotive exhaust fumes when there really weren't any. Some days were worse than others. I would be here at the shop and it smelled to me as if someone had parked a running car in here. I would go looking and sniffing for the source. Other folks would come in and swear they didn't smell anything.

 

On really bad days I would go home and smell the same thing there! Sometimes it would go on for three or four days. I smelled it constantly, so strongly that I thought I might be entering early stage Alzheimer's. (I know that phantom smells are one of the symptoms of that.) Then weeks would pass before it would happen again. Winter, summer, it didn't matter.

 

I had forgotten all about it because I haven't had it happen in so long now. I'm thinking it was another of those celiac symptoms that I didn't know was a symptom.

 

Anybody else ever have anything like that before going gluten-free?


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


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#2 ravenwoodglass

 
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Posted 07 June 2013 - 02:59 AM

I used to smell baking bread before a migraine hit. Sometimes I would get the headache but many times I would just get the visual sparkles. Hasn't happened to me in years now. Did you get migraines before you were diagnosed?


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Fire Fairy

 
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Posted 07 June 2013 - 04:16 AM

I used to smell a gas smell. Actually called the gas company out twice because no one was around to tell me there was no smell. 


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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#4 bartfull

 
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Posted 07 June 2013 - 07:55 AM

No, Raven, I have only had a migraine twice in my life. Once was when I was 12, and once was when I was 45. The first time the doctor thought it was related to mumps I had just gotten over. The second one, they thought it was related to my eyes - I was borderline glaucoma and they thought my pressure was spiking. I went in to be examined on an emergency basis and they said my pressure hadn't changed so it must just be a migraine.

 

Mom had a phantom smell that really bothered her toward the end. She thought she smelled sewage and she kept calling a plummer. He wouldn't smell anything but he was more than happy to examine everything and charge her for it. She must have had him out to the house at least four times. Nobody else could smell it at all. We all thought it must be from the Alzheimers. Maybe it was the celiac instead. She stopped taking care of herself and although I don't THINK she started eating gluten again, I do know that she stopped getting her B12 shots, so maybe she had started eating gluten again too. I guess I'll never know. :(


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#5 eers03

 
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Posted 08 June 2013 - 08:55 AM

When this happens, drink more water to flush it out.  Then, eat plenty of carbs.  Your body will do this when you aren't getting adequate carbs in your diet.  Have a potato, corn, or some rice, with your meal.  I don't know how active you are but don't do a work out while you are smelling ammonia and don't overdo it on protein while you are having this symptom.  If it persists, or won't go away, and you start feeling anxious, I would go see the doctor.  Did I mention drink plenty of water???!


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Diagnosis 11/2012

#6 Ksee

 
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Posted 08 June 2013 - 01:24 PM

Hmm, I thought of a few issues that could account for your different smells:

All of us smell things a bit differently so I wonder if those smelling "gas" can tell the difference between a gas stove and a bottle of ammonia cleaner?

Celiac is a disease of malabsorption, you all know that the food eaten isn't absorbed. When we lack nutrition our bodies burn whatever is available, fats then proteins in muscles. Protein metabolism in large amounts can't be excreted by the kidneys so alternative methods are needed. It is possible ammonia is being blown off by your own respiratory system. However, I say possible because my experience is with ICU patients. I would expect anyone with ammonia levels this high to be profoundly ill, and may be confused. 

I only say this because anyone smelling ammonia where there seems to be none, I think, should notify their doctor.

People with migraines know an aura means a migraine soon. Auras can include many symptoms. I sometimes get a tightness in my face or my digestion simply stops like someone flipped the power button off. Then, I will have a migraine between four and twenty-four hours later and when I do, my stomach can be upside down for days. This has been so bad that I became dehydrated and had to be hospitalized. 

For some people, symptoms like that are the migraine and they don't get typical pounding one-sided headaches but they do get very sick. Many of these people don't realize they are having migraines and many never get treated because they don't say anything about it.

There also are types of seizure where a person does not lose consciousness but either doesn't remember or remembers like a dream. This type of seizure can be preceded by an aura, and again, is often overlooked. Other people will describe it in different ways but what is common, is the person doesn't understand or can't remember the behavior being referred to. These seizures, depending on the type, can be rare, but I have seen even the rare type several times over the years.

Basically, new or unexplained phantom smells are valid symptoms that can mean something, and worth reporting to the doctor.  :)


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#7 eers03

 
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Posted 09 June 2013 - 04:16 AM

I'm with Ksee, its a very serious symptom that really should be monitored closely.  When I told my doctors nurse about the symptom at one point when I had it she responded "You have no clue how much you were flirting with disaster."  

 

It did resolve over time on a gluten-free diet and with an increased carb intake and water consumption.  Ksee is right.  Your body will burn fat then protein and when this is occurring, you can end up with the resulting smell.

 

Your body should burn carbs before it does either though...  And if you aren't supplying it, this can happen.  Unchecked or severe enough it can cause some very scary things to happen of immediate consequence.

 

It has to be corrected.  The good news is, it should hopefully be an easy fix.  It freaked me out when it happened though.


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Diagnosis 11/2012

#8 Nikki2777

 
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Posted 10 June 2013 - 07:01 AM

I didn't see the other thread - but for me, smelling amonia means I've got a sinus infection.


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#9 Asillem4

 
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Posted 10 June 2013 - 08:25 AM

My upper lip used to smell like fresh baked bread.

Also, my sweat was rancid. I could have showered 2 or 3 times a day and not gotten rid of the odor. I think my head and neck were the worst places for the smell. It wasn't in my armpits.

One of my children remarked that when I hugged her goodnight, my hair smelled bad.


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Promethius Lab. panel shows Pos. genetic marker / Neg. antibody. Family doc, Gastro, and Allergist refuse to look down this path any further. I've gone gluten free without the diagnosis and am so much happier now.
Intollerances to: wheat, barley, rye
Allergies to: wheat, corn, soy, milk, peanut
Annoying to: anyone who wants to cook for me, go to a restaurant, or have a cold beer on a hot day with me

#10 Gemini

 
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Posted 10 June 2013 - 11:30 AM

Or it could also be something as simple as enhanced sense of smell once your body has healed.  My sense of smell is so acute, I can smell things that no one else can.  When there is a Northeast wind here in New England, I can smell the salt in the air and I live an hour inland from the coast.  Everyone else thinks I am crazy and can't smell it, until they look on-line and see it's a northeast wind off the ocean.  I can tell which way the wind is blowing, depending on the smell of the air.

 

I also have Sjogren's Syndrome and eat very little salt in my diet as it aggravates the condition so have a heightened sense of smell and taste for salt.  This happens with other things once you go gluten-free and clean out your system.

 

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.  Maybe this is what people are smelling?  You'll certainly burn fat if you go long enough without a Celiac diagnosis.


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#11 surviormom

 
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Posted 10 June 2013 - 11:57 AM

I would smell vinegar and a few times when I was sick recently, I smelled garlic.  Now I am a good cook and cook a lot, but I had not used garlic when I was smelling it.  And the vinegar smell was on me, it was my sweat.  YUCK!


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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

#12 gatita

 
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Posted 10 June 2013 - 12:27 PM

Wow, this is such a trip. For about a month, the smell of vinegar when I used balsamic in food was overwhelming. The smell was overpowering,  like pure acetic acid -- and I couldn't stand the taste. I never had that happen before, it was so strange. But it went away. It was right around the time the skin inside my lips was peeling off, among other totally weird-o symptoms!


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Diagnosed with wheat hates me 4/13


#13 Ksee

 
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Posted 10 June 2013 - 03:48 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.


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#14 Jtoz54

 
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Posted 10 June 2013 - 05:13 PM

I frequently smell a burning smoky smell when we are watching tv but my husband and son cant smell it.  This happens at both our regular home and vacation house. I wonder if I can smell the electro magnetic field and no one else can.


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#15 IrishHeart

 
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Posted 10 June 2013 - 05:23 PM

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 if someone has a scent allergy that makes them nauseous or other symptoms that are concurrent, they should seek medical attention. 


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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.
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