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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Another Symptom I Didn't Know I Had
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bartfull    565

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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ravenwoodglass    1,218

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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Fire Fairy    26

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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bartfull    565

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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eers03    20

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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Ksee    27

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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eers03    20

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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Asillem4    0

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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Gemini    785

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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surviormom    5

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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gatita    32

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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Ksee    27

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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Jtoz54    0

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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IrishHeart    1,634

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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greenbeanie    31

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!

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surviormom    5

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.

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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.

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Ksee    27

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.

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Gemini    785

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.

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Ksee    27

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. 

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IrishHeart    1,634

, 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

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eers03    20

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.  

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Ksee    27

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.

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