From an evolutionary medicine perspective, it is best to avoid artificial sweeteners. Why would we hijack a physiological system (calorie-sensing) to try and reduce sugar consumption? Do you agree?
When I was newly diagnosed, a GP practically fell over himself advising me not to have aspartame. He kept saying it, and even wrote it on a piece of paper for me to take away. That has stayed with me.
These foods are chemicals. They should not be in our bodies. I think it was WHO recently issued a study saying aspartame was safe - it wasn't entirely convincing.
I also watched a documentary where a doc ate nothing but processed foods for a bit and it actually rewired the pleasure centers in his brain so he was effectively addicted.
I try to follow OMS, which recommends cutting out all chemical foods. Seems like a good idea to me in many ways.
Prior to MS diagnosis I went through an incredibly stressful period of spousal abandonment and experienced that metallic taste for weeks. I attributed the taste to extreme cortisol production until my body sort of gave up. Sucking on lemons was the only source of relief. About 6 months later I was in the hospital with a severe first relapse.
I can't stand artificial sweetener and go out of my way to avoid it. I don't think I've had any change to my sense of taste with MS. In fact I think I might be a super taster. One thing I have noticed and I don't know if this is MS related but I am really sensitive to smells. I can be completely floored if someone walks past me and has used a spray deodorant (I'm assuming). The Lynx Effect is basically poison to me! The same with air freshener, Febreeze etc. They give me a sore throat. But I don't think it's an allergy as the antihistamines I take don't make a difference.
personally, I've never liked the taste of sweet (natural or artificial). I've found that over the years, I eat less and less sweet, and as a result I've become more sensitive to sweet. A drop of honey in a sauce ruins it for me;).
I don't know how widespread this is, but maybe other people who eat less sweet could also have less apetite for it over time?
Oh dear. I confess that when I'm starting the day while intermittent fasting, one cup of artificially sweetened coffee really helps get the day going without consuming any carbs. I really hope this modest intake is not going to wreck my system.
Thanks, it is pretty much once a day for me. I'm not chugging Diet Coke around the clock but maybe I need to train myself to like black coffee without sweet assistance!
Personally, I would never consume anything with artificial sweetener or any processed foods. That is not because of MS but because I like cooking and I love food, real fresh food which I firmly believe is very important for good physical and mental health. Thankfully I haven't had any issues with taste.
I find that lack of taste depends and is definitely connected with appetite. As a smoulderer, I’m never quite certain when I’m having small relapses, although awakening with spasms is becoming more frequent. (And the more you discuss brainstem, I’m convinced I have more activity there than previously thought.) I don’t use artificial sweeteners, though I have in the past. (My father a long time diabetic used saccharine, and then jettisoned it.) I have appetite issues. Like often zero appetite. So I make food that tastes good, has texture, good herbs, real cheese, real butter and when necessary, real sugar. Beats not eating at all! I also import a lot of French and Italian cheeses that have heady aroma, as well imported good grain crackers that have low levels of natural sweeteners. (My sugar levels are fine.) At this point, I just desperately need to eat, and I don’t want anything artificial. I figure at my age, If I’m going down, it’s going to be with good food (with monitoring)! Cheers, Prof G! Good thoughts to all! :)
I haven't noticed a change in taste, although it might have happened so incrementally over the 35 years I've had MS that I didn't notice it. What I HAVE noticed is a major loss of smell over the last couple of years. So why can I still taste things if I can't smell them? I thought taste was dependent on smell.
I've lost some sense of smell and taste. Like most sensory things, I think you don't notice it so much unless it is complete, near complete, or happening all at once. Once both mostly came back, I don't notice it so much anymore... though I'm sure mine is probably still impaired.
Found some interesting info on this... apparently somewhere between 75 and 95% of what we commonly think of as taste actually comes from the sense of smell, though smell is only responsible for about 80% of what we taste.
So, we can taste without smell, though it is lesser and apparently includes primarily: sweet, salty, sour, bitter, and “umami” or savory. So, they do apparently have their own receptor organs.
Nope, it's not you. Reading it now I should have just said about 80% in the first part also. In other words, 20% of our ability to taste is due to taste alone, without smell. Salty, sweet, bitter, sour, and savory, all come from taste, so even if smell is lost completely, you still get this 20% that comes from taste.
I doubt that many lose smell completely, the research seems to show partial impairment, not complete. So, whatever percentage of smell you haven't lost, you can add that to the 20% that comes from taste, then parhaps it makes sense why you can still taste.
Separate fact: A lot of what people *think* is taste, is actually due to smell. So, perhaps particular flavours, or richness is due to smell? BUT, we don't realize how important the other 20% (belonging to taste) is, it's the most significant to me. For example, when I crave something, I crave salty, sweet, sour etc. I don't crave a particular flavour (nowhere near as strong to me).
Phew, thanks. Interesting -- I've probably lost a lot of my sense of taste but so incrementally that I haven't noticed it.Good to know I'll probably retain 20%, or more. Unless I start losing taste directly ...
I have a friend with MS whose one and only -- ever -- relapse involved losing all sense of taste. Well, maybe not losing it, but everything tasted the same, and it didn't taste good. For nine months all she could bear to eat was bananas, or banana smoothies. She lost heaps of weight. She was diagnosed with MS at the time (I wonder about that doctor who thought "Hmm, could this be MS?") but in the 20 years since then she's been fine. Weird.
Yw, sorry for me not re-reading my text before posting, I definitely wrote it in a confusing way (one of my brain malfunctions).
Ugh, that's a terrible one for your friend, sorry she's dealing with that. It is always a bummer to be in the outlier group. I guess things would become all about texture if that happened? Tasting mostly only bitter and copper, during a relapse was lousy for me, having everything gone would seem pretty surreal. Food would probably lose its appeal a lot, which could bring unique challenges.
No, she's fine now. It was 20 years ago, and no symptoms at all since then. I suppose it's 'benign MS' -- the only real case I personally know of. Well, the only real one. I mean, I had 'benign MS' for the first ten years ... along with many of my MS friends :(
I absolutely agree artificial sweetners should be avoided. But so should sugar itself as well as all simple carbohydrates. They're instantly turned into glucose anyways. I've heard some nutritionists call simple carbs 'long chain sugars'. Pasture raised meat, wild caught fish, pesticide free vegetables and stick with low glycemic fruit. If it's a fruit where you eat the skin/Peel make sure it's pesticide free as well. Sounds boring but I'm.fully into the idea that a bad gut and processed food/GMO food has a role in autoimmune disease.
I believe it is best to eat everything in moderation and as healthy as possible. I avoid all artificial sweeteners although it isn't always possible. They are a migraine trigger for me. It drink a lot of squash but have found that even “normal” squash has sweeteners in. I have shopped around and make sure I check labels first. My taste buds haven't really changed since MS though.
I also eat butter instead of margarine. Again everything in moderation.
Yes, I think some of this comes down to what you are comfortable with and what you can access. (The Greeks and their moderation lol.) I emphasize with migraine. :(
I find saccharine disgusting, which I avoid in any food or drink. I think that has become worse since MS diagnosis, but have never considered it an issue...since I avoid it anyway. Not much help really :)
I enter my experience here so others in a similar situation might know what is possible. You ask, “Why would we hijack a physiological system (calorie-sensing) to try and reduce sugar consumption?”. For me, simply because my sugar was too high and I was considered pre-diabetic. MS was sufficient for me in terms of having a disease; didn’t need another one. I cut out ALL added sugar and any really sweet fruit eaten on a regular basis. Still drink smoothies from vegetables and eat others. Corn is probably my biggest source of sugar. My sugar level immediately dropped to a normal level and has stayed there for 3 years. (So I beat one disease [so far]). Also lost weight and blood pressure improved as a side effect. I eat maybe 2 packets of aspartame a day with coffee, and have sugar free Hershey’s chocolate before bed when I’m watching TV (my only “sweet” treat along with corn on the cob). As far as the correlation between artificial sweetener and circulatory problems, wouldn’t a correlation be expected as people with heart disease etc. would naturally curb their sugar intake (or was that taken into account?). Also, no, I’ve never noticed a taste problem or change, although that doesn’t rule anything out- just never paid enough attention. But doesn’t seem so, looking back.
Glad you’re not retiring yet Doctor. I’m looking forward to you being around longer than me and continuing to read your stuff. Thanks for all your work.
RE: "As far as the correlation between artificial sweetener and circulatory problems, wouldn’t a correlation be expected as people with heart disease etc. would naturally curb their sugar intake (or was that taken into account?)."
Yes. this is taken into account as a covariate. However, the association is just a correlation and does not prove causation. More work needs to be done to define how artificial sweeteners impact cardiovascular health.
I am not a Dr but the lack of sleep that may result from not using that small amount of xylitol may be more harmful. I use a dry mouth gel some nights too and it contains xylitol. I don't like using it but needs must. Many medications contain artificial sweeteners too, it has become difficult to completely avoid them. (You are probably already aware but it is highly toxic to dogs.)
On the whole our species is so far removed from a natural lifestyle now (separated from nature/natural light by concrete and glass, diet, exercise, air quality, pharmaceuticals, pollution from technology etc) that there is only so much difference we can make. I can hear Prof G talking of marginal gains as I type. :-) We can't get everything right.
I don’t think I have altered taste. But I was very interested to read the study you mentioned that showed taste identification scores for sucrose, citric acid, caffeine, and salt were significantly lower in pwMS.
I am embarrassed to say I have about 3/5 sugars in a cup of tea [I only have one cup a day for the sake of my teeth; I’m actually have problems getting enough calories]. Is it possible that could be that I have a lower sugar taste identification?
Also, I drink a lot of lemon squash and blackcurrant juice that is sugar free but presumably has artificial sweetener. Should I stop?
When I was newly diagnosed, a GP practically fell over himself advising me not to have aspartame. He kept saying it, and even wrote it on a piece of paper for me to take away. That has stayed with me.
These foods are chemicals. They should not be in our bodies. I think it was WHO recently issued a study saying aspartame was safe - it wasn't entirely convincing.
I also watched a documentary where a doc ate nothing but processed foods for a bit and it actually rewired the pleasure centers in his brain so he was effectively addicted.
I try to follow OMS, which recommends cutting out all chemical foods. Seems like a good idea to me in many ways.
Interesting about your GP. But yes! Processed foods are the worst! The whole point is to get one hooked! Grrr…
Prior to MS diagnosis I went through an incredibly stressful period of spousal abandonment and experienced that metallic taste for weeks. I attributed the taste to extreme cortisol production until my body sort of gave up. Sucking on lemons was the only source of relief. About 6 months later I was in the hospital with a severe first relapse.
Wise words ProfG :)
I can't stand artificial sweetener and go out of my way to avoid it. I don't think I've had any change to my sense of taste with MS. In fact I think I might be a super taster. One thing I have noticed and I don't know if this is MS related but I am really sensitive to smells. I can be completely floored if someone walks past me and has used a spray deodorant (I'm assuming). The Lynx Effect is basically poison to me! The same with air freshener, Febreeze etc. They give me a sore throat. But I don't think it's an allergy as the antihistamines I take don't make a difference.
personally, I've never liked the taste of sweet (natural or artificial). I've found that over the years, I eat less and less sweet, and as a result I've become more sensitive to sweet. A drop of honey in a sauce ruins it for me;).
I don't know how widespread this is, but maybe other people who eat less sweet could also have less apetite for it over time?
Oh dear. I confess that when I'm starting the day while intermittent fasting, one cup of artificially sweetened coffee really helps get the day going without consuming any carbs. I really hope this modest intake is not going to wreck my system.
Ehhh, I don’t think so, but then I’m sort of a moderation type. If you were day in/day out maybe? I don’t know how often it is…?
Thanks, it is pretty much once a day for me. I'm not chugging Diet Coke around the clock but maybe I need to train myself to like black coffee without sweet assistance!
Personally, I would never consume anything with artificial sweetener or any processed foods. That is not because of MS but because I like cooking and I love food, real fresh food which I firmly believe is very important for good physical and mental health. Thankfully I haven't had any issues with taste.
Yes!!
I find that lack of taste depends and is definitely connected with appetite. As a smoulderer, I’m never quite certain when I’m having small relapses, although awakening with spasms is becoming more frequent. (And the more you discuss brainstem, I’m convinced I have more activity there than previously thought.) I don’t use artificial sweeteners, though I have in the past. (My father a long time diabetic used saccharine, and then jettisoned it.) I have appetite issues. Like often zero appetite. So I make food that tastes good, has texture, good herbs, real cheese, real butter and when necessary, real sugar. Beats not eating at all! I also import a lot of French and Italian cheeses that have heady aroma, as well imported good grain crackers that have low levels of natural sweeteners. (My sugar levels are fine.) At this point, I just desperately need to eat, and I don’t want anything artificial. I figure at my age, If I’m going down, it’s going to be with good food (with monitoring)! Cheers, Prof G! Good thoughts to all! :)
I haven't noticed a change in taste, although it might have happened so incrementally over the 35 years I've had MS that I didn't notice it. What I HAVE noticed is a major loss of smell over the last couple of years. So why can I still taste things if I can't smell them? I thought taste was dependent on smell.
I've lost some sense of smell and taste. Like most sensory things, I think you don't notice it so much unless it is complete, near complete, or happening all at once. Once both mostly came back, I don't notice it so much anymore... though I'm sure mine is probably still impaired.
Found some interesting info on this... apparently somewhere between 75 and 95% of what we commonly think of as taste actually comes from the sense of smell, though smell is only responsible for about 80% of what we taste.
So, we can taste without smell, though it is lesser and apparently includes primarily: sweet, salty, sour, bitter, and “umami” or savory. So, they do apparently have their own receptor organs.
Tilt, I'm having trouble making sense of your first sentence. It seems contradictory. Or is it my cognitive problems?
Nope, it's not you. Reading it now I should have just said about 80% in the first part also. In other words, 20% of our ability to taste is due to taste alone, without smell. Salty, sweet, bitter, sour, and savory, all come from taste, so even if smell is lost completely, you still get this 20% that comes from taste.
I doubt that many lose smell completely, the research seems to show partial impairment, not complete. So, whatever percentage of smell you haven't lost, you can add that to the 20% that comes from taste, then parhaps it makes sense why you can still taste.
Separate fact: A lot of what people *think* is taste, is actually due to smell. So, perhaps particular flavours, or richness is due to smell? BUT, we don't realize how important the other 20% (belonging to taste) is, it's the most significant to me. For example, when I crave something, I crave salty, sweet, sour etc. I don't crave a particular flavour (nowhere near as strong to me).
Phew, thanks. Interesting -- I've probably lost a lot of my sense of taste but so incrementally that I haven't noticed it.Good to know I'll probably retain 20%, or more. Unless I start losing taste directly ...
I have a friend with MS whose one and only -- ever -- relapse involved losing all sense of taste. Well, maybe not losing it, but everything tasted the same, and it didn't taste good. For nine months all she could bear to eat was bananas, or banana smoothies. She lost heaps of weight. She was diagnosed with MS at the time (I wonder about that doctor who thought "Hmm, could this be MS?") but in the 20 years since then she's been fine. Weird.
Yw, sorry for me not re-reading my text before posting, I definitely wrote it in a confusing way (one of my brain malfunctions).
Ugh, that's a terrible one for your friend, sorry she's dealing with that. It is always a bummer to be in the outlier group. I guess things would become all about texture if that happened? Tasting mostly only bitter and copper, during a relapse was lousy for me, having everything gone would seem pretty surreal. Food would probably lose its appeal a lot, which could bring unique challenges.
No, she's fine now. It was 20 years ago, and no symptoms at all since then. I suppose it's 'benign MS' -- the only real case I personally know of. Well, the only real one. I mean, I had 'benign MS' for the first ten years ... along with many of my MS friends :(
I absolutely agree artificial sweetners should be avoided. But so should sugar itself as well as all simple carbohydrates. They're instantly turned into glucose anyways. I've heard some nutritionists call simple carbs 'long chain sugars'. Pasture raised meat, wild caught fish, pesticide free vegetables and stick with low glycemic fruit. If it's a fruit where you eat the skin/Peel make sure it's pesticide free as well. Sounds boring but I'm.fully into the idea that a bad gut and processed food/GMO food has a role in autoimmune disease.
I believe it is best to eat everything in moderation and as healthy as possible. I avoid all artificial sweeteners although it isn't always possible. They are a migraine trigger for me. It drink a lot of squash but have found that even “normal” squash has sweeteners in. I have shopped around and make sure I check labels first. My taste buds haven't really changed since MS though.
I also eat butter instead of margarine. Again everything in moderation.
Yes, I think some of this comes down to what you are comfortable with and what you can access. (The Greeks and their moderation lol.) I emphasize with migraine. :(
I find saccharine disgusting, which I avoid in any food or drink. I think that has become worse since MS diagnosis, but have never considered it an issue...since I avoid it anyway. Not much help really :)
I don´t really eat them other than in chewing gum which in fairness I have quite a bit of...
Not sure where Xylitol falls in your view - skipping the Xylimelts at night almost certainly would not be helpful for my dental health...
I enter my experience here so others in a similar situation might know what is possible. You ask, “Why would we hijack a physiological system (calorie-sensing) to try and reduce sugar consumption?”. For me, simply because my sugar was too high and I was considered pre-diabetic. MS was sufficient for me in terms of having a disease; didn’t need another one. I cut out ALL added sugar and any really sweet fruit eaten on a regular basis. Still drink smoothies from vegetables and eat others. Corn is probably my biggest source of sugar. My sugar level immediately dropped to a normal level and has stayed there for 3 years. (So I beat one disease [so far]). Also lost weight and blood pressure improved as a side effect. I eat maybe 2 packets of aspartame a day with coffee, and have sugar free Hershey’s chocolate before bed when I’m watching TV (my only “sweet” treat along with corn on the cob). As far as the correlation between artificial sweetener and circulatory problems, wouldn’t a correlation be expected as people with heart disease etc. would naturally curb their sugar intake (or was that taken into account?). Also, no, I’ve never noticed a taste problem or change, although that doesn’t rule anything out- just never paid enough attention. But doesn’t seem so, looking back.
Glad you’re not retiring yet Doctor. I’m looking forward to you being around longer than me and continuing to read your stuff. Thanks for all your work.
RE: "As far as the correlation between artificial sweetener and circulatory problems, wouldn’t a correlation be expected as people with heart disease etc. would naturally curb their sugar intake (or was that taken into account?)."
Yes. this is taken into account as a covariate. However, the association is just a correlation and does not prove causation. More work needs to be done to define how artificial sweeteners impact cardiovascular health.
I am not a Dr but the lack of sleep that may result from not using that small amount of xylitol may be more harmful. I use a dry mouth gel some nights too and it contains xylitol. I don't like using it but needs must. Many medications contain artificial sweeteners too, it has become difficult to completely avoid them. (You are probably already aware but it is highly toxic to dogs.)
On the whole our species is so far removed from a natural lifestyle now (separated from nature/natural light by concrete and glass, diet, exercise, air quality, pharmaceuticals, pollution from technology etc) that there is only so much difference we can make. I can hear Prof G talking of marginal gains as I type. :-) We can't get everything right.
I don’t think I have altered taste. But I was very interested to read the study you mentioned that showed taste identification scores for sucrose, citric acid, caffeine, and salt were significantly lower in pwMS.
I am embarrassed to say I have about 3/5 sugars in a cup of tea [I only have one cup a day for the sake of my teeth; I’m actually have problems getting enough calories]. Is it possible that could be that I have a lower sugar taste identification?
Also, I drink a lot of lemon squash and blackcurrant juice that is sugar free but presumably has artificial sweetener. Should I stop?