Hi all,
I’d like to just throw out a few random thoughts on this terrible condition we suffer. Perhaps others can identify with what I say. I was very active on this forum a few years ago but sort of took a break from it for a good while now. I going to probably repeat what I said in older posts so apologies if anybody has read this before.
The problem – Ok so I really stink. But it’s not a normal bad bo / doesn’t wash kind of stinkiness. Over all my life ever since I was around 12 I’ve got terrible reactions from people. It’s like “ugh you farted” comments. Here’s the thing – very rarely can I smell any of my bad odours myself. Now and again I get a whiff of something terrible but most of the time I don’t detect anything wrong.
Like one day when I was doing a summer job aged around 20; I was sitting in the cafeteria with a few of my co wrokers when one of them exclaimed – “there’s some smell of shit around this table!”. I could smell absolutely nothing but from bitter past experience I knew it must be emanating from me.
Also I can’t feel anything either. Like with the incident in the cafeteria you might guess if there was a fecal odour in the air I must have had an accident in my underpants but nope nothing like that happened. Also the fart comments, 99% of the time I don’t feel any gas escaping or anything like that. One of the most depressing things about this condition is the knowledge that people must feel I’m an extremely ignorant person – like I could be talking away to them and from the smell they might think I left out one oof these silent killer type farts while I am blissfully unaware of anything wrong. Many people on this forum used to describe this event where one frts without knowing it as “leaky gas”. I do think a lot of my smells come from this “leaky gas” type situation but I do think the bad smells also come through my skin in a very weird form of body odour. Basically there is something inside of me that causes me to stink and any outlet this smell can escape from it will do whether from my behind, through my skin and also by my breath.
One of the other strange things about my odour is that people can smell me from a very long distance away. It’s like my smell can nearly envelope the entirety of a large room. If I told you some of the situations where people have smelt me from a good way away a lot of people would assumed I’m delusional and paranoid but honestly I’ve had too many experiences to not know this is indeed the case.
It’s usual a fart, fecal, burning or rotten ‘”off” smell that gets complained about. Some days it’s one type of odour on other days it’s a different odour but they are the main ones.
The cause. – Ok so what’s causing me to smell. Through reading and experience and all I’ve come to form a theory as to what causes me to stink so bad. Firstly I am no medical professional so maybe you might treat my theories with a pinch of salt which is fair enough I guess. Also perhaps there are a number of different causes to this condition. When I was last on this forum regularly a problem with a person’s pelvic floor was a very popular theory as to the reason people might smell. Of course this may be the cause for a few sufferers but I am convinced it is very unlikely to be the case for anyone with the symptoms I described above. Like for one reason it doesn’t explain why people can smell me from so far away. Unfortunately having a mistaken belief on what causes your odour can have very bad consequences. Like I was reading one poor chap stating he was drinking loads of milk everyday to strengthen the muscles on his pelvic floor. Believe me I know from bitter experience drinking plenty of milk is one of the last things you should be doing if you have leaky gas.
I really would urge everyone to gooogle Fish Odour Syndrome or Trimethylaminuria (which can be abbreviated to TMAU). By the way apparently a lot of sufferers with tmau don’t mostly smell of fish so the name can be slightly misleading. I think it is the only medically recognised condition for chronic odour sufferers though I may be wrong about that.
This is my amateur understanding of tmau but please google it yourself to form your own conclusions.
When you digest certain types of essential nutrients a substance called trimethylamine gets released. This substance is very odorous but the liver produces an enzyme called FMO3 which neutralises the odours by means which are far too complicated for me to understand!
If you have primary tmau your liver doesn’t produce FMO3 so then trimethylamine stays in your system unchecked causing someone to become very smell unfortunately.
Secondary tmau is where your liver does produce FMO3 but your gut contains a lot of bacteria which gives out too much trimethylamine and overwhelms the liver’s ability to cope with it.
There is a test for tmau – interestingly a majority of the tests come back negative but I did read that a lot of people feel there can be plenty of false negatives and you might have to do a few tests to get a positive (I’m not 100% sure is that the case; Im trying to recall something I read a good few years ago sorry).
My test came back negative anyway. However I really feel if I don’t fall under the exact medical criteria for secondary tmau I have something very similar to it, a sort of sister condition.
Before I explain why I’d just like to briefly mention something called small intestinal bacterial overgrowth – sibo (worth googling that too!). Simple version (think this is accurate enough but not certain!) is there isn’t supposed to be much if any bacteria in your small intestine as food should be fully digested by that point. However if some undigested does enter there then it can create the opportunity for bacteria to exist there. I did test positive for SIBO.
So my grand theory of why I stink (and maybe you do too!). I’ve always had problems with my digestion. Often my stomach has a knotted feeling; even though I have a normal appetite I’ve always been underweight – skinny as opposed to thin. So I don’t think I digest my food very well; this leads to an explosion of gut bacteria in my system over what would normally be there for the average person. However I’m guessing a lot of people have this type of problem; have sibo etc. My great misfortune is that whatever the particular type of strains of bacteria they release very nasty odourous compounds which cause me to stink. Those bacteria must be particularly rare I’m guessing as otherwise loads of people would suffer from these weird smells which they obviously don’t.
The solution – Right so I’m very sad to say from all my years reading forums success stories of curing this terrible are few and far between I think the attitude is to manage the condition more than cure it.
There definitely isn’t a cure for primary tmau but with a choline restricted diet (though some choline is necessary to injest) it can lead to a sharp drop in the symptoms.
Secondary tmau is in theory anyway supposed to be curable through a heavy dose of a number of antibiotics given in rotation.. Unfortunately on different forums I haven’t read of too many people being totally cured in this way but who knows maybe all the cured ones left the forums! I think different antibiotics might work better for different types of bacteria so many with trial and error it might work better.
Probiotics are supposed to help as well. Again though in might be a case of trial and error. I was on a few probiotics that didn’t do anything for me. Actually one or two probiotics sharply increased my symptoms when I took them – perhaps though it’s a case of things getting worse before they get better but I was too scared to stay on them to find out.
Diet is really really important. Well I guess we all know certain foods can cause gas / bloating are easier to digest than others.
I think though if you have a lot of “bad” bacteria in your gut a good approach is to try and starve them out. Apparently you can change the make up of your gut bacteria through diet alone.
Unfortunately though you have to be patient. I do remember one expert saying for this approach to work it will take anything from three months to a year with six months being the most usual. One thing to note is that if the bad/wrong type of bacteria start to die off your smell could increase a lot in the short term.
I don’t know what is the exact type of diet is best but unfortunately sugar is out as the wrong type of bacteria feast on that. Maybe its worth googling the fodmaps diet as it’s suppose to highlight types of food molecules that are difficult to digest though personally a lot of it I feel is trial and error based on your own body’s reactions.
Fecal transplants! Ok if you haven’t come across this before you now must think I am a complete loon. If you google it though you will see that it is sometimes used to treat colitis. I think the theory is it introduces the donor’s gut bacteria into your own system replacing your own smelly ones. I really have to stress that this is all theoretical at least in the case of secondary tmau and similar conditions so who knows it might not work for people like us at all.
Unfortunately I don’t have the discipline to maintain a very strict diet for months on end, I keep meaning to try again but no dice.
I’d love to undergo a session of heavy duty antibiotics in rotation but since according to medical science I’ve nothing wrong with me (though I get constant adverse reactions everyday) don’t think there’s a doctor out there who would prescribe them.
I’d love also to have a proper medical supervised (apparently there are diy versions available!) fecal transplant. Unfortunately I think I’m right in saying neither in Europe or America there isn’t too many doctors offering it. Again for all I know it might have no effect. Just wish a lot more research was done on these type of conditions we have.
Tips – From my tragically long experience living with this terrible condition I have learnt one or two things I’d like to share on here
Before I go on whatever dietary advice or anything I give out here – I am definitely not any kind of expert or anything so I can’t say at all a person should or should not have this food or that. It’s just my experiences with different foods which you possibly may find ring a bell with your own experience also.
Firstly many odour sufferers to have a problem with dairy and red meat. I remember a good while ago now seeing this poll on an old body odour forum asking which foods caused people the most problems. By far dairy and red meat came well out on top. Thinking about my very bad days where my odour was at its height I often had a red meat dinner the night before and definitely dairy doesn’t suit me either so I would totally concur with the poll. Bear in mind if you radically cut back on diary in your diet you may need supplements to provide the missing nutrients.
We think of fruit as very healthy but in my experience eating too much of it in one go caused me a lot of problems. Like this one morning I decided I’d be good and just eat loads of fruit instead of my usual breakfast. Sad to say I reeked of a fecal smell for ages afterwards . Also I remembered this one time I had a fruit smoothie and again a fecal smell followed me around the next day. I think any foodstuff which is hard to digest gives odour sufferers problems and it seems fructose can be like that a bit. I am definitely not saying avoid fruit, I would still eat an orange for sure, but perhaps for some people anyway it would be best to space out the times you eat fruit and not have it all in one go.
Supplements. Over the years I have read on forums lots of different recommendations about various supplements. I guess what might work for one wouldn’t work for another though. For instance I read in various places how charcoal tablets were really good to sort of trap any odours in the body. Twice I gave them a go and twice I got a clear flatulence smell coming from after them .
It’s said chlorophyll could be a good supplement to take for odour sufferers. If you’d like to google chlorophyll and smell you can see plenty of good things about it in that regard. I tried it a few times and didn’t see too much benefit but I probably didn’t stick with it for long enough in fairness. I didn’t have any negative side effects unlike charcoal.
A vitamin B supplement might be worth considering. Apparently vitamin B2 called riboflavin can help reduce the odour for tmau sufferers for some reason. Also vitamin B12 is supposed to give you extra energy. One problem I’ve had down through the years is I have very low energy levels. I suspect that because I don’t digest my food so well especially meat I am deficient in B12. Interestingly I read on twitter recently someone say they suffer from tiredness so much many days they’d get out of bed feeling like they had a massive hangover even though they weren’t drinking the night before. That’s something I can relate to alright but anyway they said since taking b12 those days are gone.
I should point out that if you are taking supplements it’s perhaps best to take them in powder form if you can. I find big chunky tablets hard to digest which certainly affects my smell/
One other thing I’ve noticed is that I have to be particularly careful what I eat early in the morning. Like in the days when I used eat red meat if I ate bacon for breakfast I’d be sure to stink the rest of the day while if I ate it at evening time I might be able to get away with it odour wise. I have a few other examples like that were potential trigger foods were a lot more dangerous in the morning as opposed to later on.
Stress. I guess this is a super obvious one – the more stressed I am the more I smell. The only problem is when you are entering a social setting knowing you have an odour problem it’s practically impossible to be at ease with yourself. I did hear some meditation apps are good for increasing your capacity for calm so I might give them a go.
Sleep. Another obvious pattern with me is that the more tired I am the more I smell so I do try and get a good nights sleep. Of course it goes both ways; like for people with digestive problems they are more prone to tiredness for various reasons such as being deficient in b12 as I mentioned earlier.
Am sorry it’s such a long post, I used post on here quite a lot years ago but unfortunately it’s a good bit quieter on here now so I haven’t posted much at all recently. I said I’d get everything I had to say out all in one go haha. Any feedback on this post like if something I said resonated with a person’s experience or if perhaps someone disagreed with one of my points I’d love to hear it.
All the best and stay strong.
I’d like to just throw out a few random thoughts on this terrible condition we suffer. Perhaps others can identify with what I say. I was very active on this forum a few years ago but sort of took a break from it for a good while now. I going to probably repeat what I said in older posts so apologies if anybody has read this before.
The problem – Ok so I really stink. But it’s not a normal bad bo / doesn’t wash kind of stinkiness. Over all my life ever since I was around 12 I’ve got terrible reactions from people. It’s like “ugh you farted” comments. Here’s the thing – very rarely can I smell any of my bad odours myself. Now and again I get a whiff of something terrible but most of the time I don’t detect anything wrong.
Like one day when I was doing a summer job aged around 20; I was sitting in the cafeteria with a few of my co wrokers when one of them exclaimed – “there’s some smell of shit around this table!”. I could smell absolutely nothing but from bitter past experience I knew it must be emanating from me.
Also I can’t feel anything either. Like with the incident in the cafeteria you might guess if there was a fecal odour in the air I must have had an accident in my underpants but nope nothing like that happened. Also the fart comments, 99% of the time I don’t feel any gas escaping or anything like that. One of the most depressing things about this condition is the knowledge that people must feel I’m an extremely ignorant person – like I could be talking away to them and from the smell they might think I left out one oof these silent killer type farts while I am blissfully unaware of anything wrong. Many people on this forum used to describe this event where one frts without knowing it as “leaky gas”. I do think a lot of my smells come from this “leaky gas” type situation but I do think the bad smells also come through my skin in a very weird form of body odour. Basically there is something inside of me that causes me to stink and any outlet this smell can escape from it will do whether from my behind, through my skin and also by my breath.
One of the other strange things about my odour is that people can smell me from a very long distance away. It’s like my smell can nearly envelope the entirety of a large room. If I told you some of the situations where people have smelt me from a good way away a lot of people would assumed I’m delusional and paranoid but honestly I’ve had too many experiences to not know this is indeed the case.
It’s usual a fart, fecal, burning or rotten ‘”off” smell that gets complained about. Some days it’s one type of odour on other days it’s a different odour but they are the main ones.
The cause. – Ok so what’s causing me to smell. Through reading and experience and all I’ve come to form a theory as to what causes me to stink so bad. Firstly I am no medical professional so maybe you might treat my theories with a pinch of salt which is fair enough I guess. Also perhaps there are a number of different causes to this condition. When I was last on this forum regularly a problem with a person’s pelvic floor was a very popular theory as to the reason people might smell. Of course this may be the cause for a few sufferers but I am convinced it is very unlikely to be the case for anyone with the symptoms I described above. Like for one reason it doesn’t explain why people can smell me from so far away. Unfortunately having a mistaken belief on what causes your odour can have very bad consequences. Like I was reading one poor chap stating he was drinking loads of milk everyday to strengthen the muscles on his pelvic floor. Believe me I know from bitter experience drinking plenty of milk is one of the last things you should be doing if you have leaky gas.
I really would urge everyone to gooogle Fish Odour Syndrome or Trimethylaminuria (which can be abbreviated to TMAU). By the way apparently a lot of sufferers with tmau don’t mostly smell of fish so the name can be slightly misleading. I think it is the only medically recognised condition for chronic odour sufferers though I may be wrong about that.
This is my amateur understanding of tmau but please google it yourself to form your own conclusions.
When you digest certain types of essential nutrients a substance called trimethylamine gets released. This substance is very odorous but the liver produces an enzyme called FMO3 which neutralises the odours by means which are far too complicated for me to understand!
If you have primary tmau your liver doesn’t produce FMO3 so then trimethylamine stays in your system unchecked causing someone to become very smell unfortunately.
Secondary tmau is where your liver does produce FMO3 but your gut contains a lot of bacteria which gives out too much trimethylamine and overwhelms the liver’s ability to cope with it.
There is a test for tmau – interestingly a majority of the tests come back negative but I did read that a lot of people feel there can be plenty of false negatives and you might have to do a few tests to get a positive (I’m not 100% sure is that the case; Im trying to recall something I read a good few years ago sorry).
My test came back negative anyway. However I really feel if I don’t fall under the exact medical criteria for secondary tmau I have something very similar to it, a sort of sister condition.
Before I explain why I’d just like to briefly mention something called small intestinal bacterial overgrowth – sibo (worth googling that too!). Simple version (think this is accurate enough but not certain!) is there isn’t supposed to be much if any bacteria in your small intestine as food should be fully digested by that point. However if some undigested does enter there then it can create the opportunity for bacteria to exist there. I did test positive for SIBO.
So my grand theory of why I stink (and maybe you do too!). I’ve always had problems with my digestion. Often my stomach has a knotted feeling; even though I have a normal appetite I’ve always been underweight – skinny as opposed to thin. So I don’t think I digest my food very well; this leads to an explosion of gut bacteria in my system over what would normally be there for the average person. However I’m guessing a lot of people have this type of problem; have sibo etc. My great misfortune is that whatever the particular type of strains of bacteria they release very nasty odourous compounds which cause me to stink. Those bacteria must be particularly rare I’m guessing as otherwise loads of people would suffer from these weird smells which they obviously don’t.
The solution – Right so I’m very sad to say from all my years reading forums success stories of curing this terrible are few and far between I think the attitude is to manage the condition more than cure it.
There definitely isn’t a cure for primary tmau but with a choline restricted diet (though some choline is necessary to injest) it can lead to a sharp drop in the symptoms.
Secondary tmau is in theory anyway supposed to be curable through a heavy dose of a number of antibiotics given in rotation.. Unfortunately on different forums I haven’t read of too many people being totally cured in this way but who knows maybe all the cured ones left the forums! I think different antibiotics might work better for different types of bacteria so many with trial and error it might work better.
Probiotics are supposed to help as well. Again though in might be a case of trial and error. I was on a few probiotics that didn’t do anything for me. Actually one or two probiotics sharply increased my symptoms when I took them – perhaps though it’s a case of things getting worse before they get better but I was too scared to stay on them to find out.
Diet is really really important. Well I guess we all know certain foods can cause gas / bloating are easier to digest than others.
I think though if you have a lot of “bad” bacteria in your gut a good approach is to try and starve them out. Apparently you can change the make up of your gut bacteria through diet alone.
Unfortunately though you have to be patient. I do remember one expert saying for this approach to work it will take anything from three months to a year with six months being the most usual. One thing to note is that if the bad/wrong type of bacteria start to die off your smell could increase a lot in the short term.
I don’t know what is the exact type of diet is best but unfortunately sugar is out as the wrong type of bacteria feast on that. Maybe its worth googling the fodmaps diet as it’s suppose to highlight types of food molecules that are difficult to digest though personally a lot of it I feel is trial and error based on your own body’s reactions.
Fecal transplants! Ok if you haven’t come across this before you now must think I am a complete loon. If you google it though you will see that it is sometimes used to treat colitis. I think the theory is it introduces the donor’s gut bacteria into your own system replacing your own smelly ones. I really have to stress that this is all theoretical at least in the case of secondary tmau and similar conditions so who knows it might not work for people like us at all.
Unfortunately I don’t have the discipline to maintain a very strict diet for months on end, I keep meaning to try again but no dice.
I’d love to undergo a session of heavy duty antibiotics in rotation but since according to medical science I’ve nothing wrong with me (though I get constant adverse reactions everyday) don’t think there’s a doctor out there who would prescribe them.
I’d love also to have a proper medical supervised (apparently there are diy versions available!) fecal transplant. Unfortunately I think I’m right in saying neither in Europe or America there isn’t too many doctors offering it. Again for all I know it might have no effect. Just wish a lot more research was done on these type of conditions we have.
Tips – From my tragically long experience living with this terrible condition I have learnt one or two things I’d like to share on here
Before I go on whatever dietary advice or anything I give out here – I am definitely not any kind of expert or anything so I can’t say at all a person should or should not have this food or that. It’s just my experiences with different foods which you possibly may find ring a bell with your own experience also.
Firstly many odour sufferers to have a problem with dairy and red meat. I remember a good while ago now seeing this poll on an old body odour forum asking which foods caused people the most problems. By far dairy and red meat came well out on top. Thinking about my very bad days where my odour was at its height I often had a red meat dinner the night before and definitely dairy doesn’t suit me either so I would totally concur with the poll. Bear in mind if you radically cut back on diary in your diet you may need supplements to provide the missing nutrients.
We think of fruit as very healthy but in my experience eating too much of it in one go caused me a lot of problems. Like this one morning I decided I’d be good and just eat loads of fruit instead of my usual breakfast. Sad to say I reeked of a fecal smell for ages afterwards . Also I remembered this one time I had a fruit smoothie and again a fecal smell followed me around the next day. I think any foodstuff which is hard to digest gives odour sufferers problems and it seems fructose can be like that a bit. I am definitely not saying avoid fruit, I would still eat an orange for sure, but perhaps for some people anyway it would be best to space out the times you eat fruit and not have it all in one go.
Supplements. Over the years I have read on forums lots of different recommendations about various supplements. I guess what might work for one wouldn’t work for another though. For instance I read in various places how charcoal tablets were really good to sort of trap any odours in the body. Twice I gave them a go and twice I got a clear flatulence smell coming from after them .
It’s said chlorophyll could be a good supplement to take for odour sufferers. If you’d like to google chlorophyll and smell you can see plenty of good things about it in that regard. I tried it a few times and didn’t see too much benefit but I probably didn’t stick with it for long enough in fairness. I didn’t have any negative side effects unlike charcoal.
A vitamin B supplement might be worth considering. Apparently vitamin B2 called riboflavin can help reduce the odour for tmau sufferers for some reason. Also vitamin B12 is supposed to give you extra energy. One problem I’ve had down through the years is I have very low energy levels. I suspect that because I don’t digest my food so well especially meat I am deficient in B12. Interestingly I read on twitter recently someone say they suffer from tiredness so much many days they’d get out of bed feeling like they had a massive hangover even though they weren’t drinking the night before. That’s something I can relate to alright but anyway they said since taking b12 those days are gone.
I should point out that if you are taking supplements it’s perhaps best to take them in powder form if you can. I find big chunky tablets hard to digest which certainly affects my smell/
One other thing I’ve noticed is that I have to be particularly careful what I eat early in the morning. Like in the days when I used eat red meat if I ate bacon for breakfast I’d be sure to stink the rest of the day while if I ate it at evening time I might be able to get away with it odour wise. I have a few other examples like that were potential trigger foods were a lot more dangerous in the morning as opposed to later on.
Stress. I guess this is a super obvious one – the more stressed I am the more I smell. The only problem is when you are entering a social setting knowing you have an odour problem it’s practically impossible to be at ease with yourself. I did hear some meditation apps are good for increasing your capacity for calm so I might give them a go.
Sleep. Another obvious pattern with me is that the more tired I am the more I smell so I do try and get a good nights sleep. Of course it goes both ways; like for people with digestive problems they are more prone to tiredness for various reasons such as being deficient in b12 as I mentioned earlier.
Am sorry it’s such a long post, I used post on here quite a lot years ago but unfortunately it’s a good bit quieter on here now so I haven’t posted much at all recently. I said I’d get everything I had to say out all in one go haha. Any feedback on this post like if something I said resonated with a person’s experience or if perhaps someone disagreed with one of my points I’d love to hear it.
All the best and stay strong.
