Yeah, it worked really well actually. It seems that their seizures are related to sugar metabolism in the brain and switching to a fasted state enabled the production and use of ketones instead of glucose. That leas to a reduction from seizures as much as twice an hour to one or less per day most of the time. Now we (solidarity and other benefits) eat a really simple diet of mostly simple cuts of meat cooked to medium-rare as well as chicken wings and butter. The butter maybe an issue though, so we are testing removing that too after the next long fast to see if we get better results.
So down from ~30 seizures per day to maybe 1 seems like a fairly good fix and we just treat it like an allergy. No carbs, no fibre, no sugar alcohols, no artificial sweeteners, and soon maybe no butter either. Better thab seizures, good for overall health so far, and fairly sustainable. I may miss cheesecake but not as much as I don’t miss my partner having seizures all day.
On a keto based diet, you’ll need those fats. Perhaps consider something like sunflower oil instead though? Nuts also come with plenty of fats and have a lot of fiber too. Some have carbs more than others, so you’d have to check which ones fit your specific diet, but these are a great source of healthy fats and help keeping the gut biomes working well.
Edit: just to add, you could experiment with the fiber more. Long carbs have a very different effect on the body vs. short ones, so those, in moderation to keep the keto state up, could be okay for the partner too, and perhaps give more robustness/variety to the diet?
Yeah, we need fats for sure. Our thinking at this point is to aim for saturated fats as much as possible, less than 5% polyunsaturated and less than 30% mono. That said, pork belly has a tonne of fat but a surprisingly large amount of mono. Also, it is delicious.
The nuts and seeds are just not something we are doing at the moment. We will experiment with introducing small amounts of interest foods but I think seeds are largely out because of the various chemicals in the casing. Some beans may be OK after sprouting them because that takes the acid from the skin and recycles it into energy for the growing plant, but there is no similar disarming strategy for most seeds.
As for fibre, adding fibre led to a fairly serious gut issue, think blood and pain. For now fibre is banned, not allowed in the food club. Given some time it may be tested again, but the last time showed me unspeakable horrors.
I think the diet is currently robust enough for the next year. After that other things may be viable, but most likely it will be very small amounts and infrequently. If we do try fibre again it will probably be home ferments like pickles because the bacteria which break down the fibre are there in the food, so even if there is a problem with my partner digesting the fibre the bacteria there can help.
Keto fats can come from saturated fats, I strongly recommend against using industrial seed oils as a fat substitute as they increase overall body inflammation
Oh, this is new to me. If that is true, then that would still require balancing, since saturated fats come with other problems themselves. I suppose there’s no “clean” way to do anything at any rate, so it takes personal testing and monitoring. But I am fully willing to accept my recommendations might be outdated or misguided, and what you say is correct. It has been a while since I was on an overseen keto diet and things do change in time with new research and guidelines. To that end, I’d recommend checking out if that is indeed true, and if the new recommendations/consensus would make my point moot.
Either way, the fiber was a strong point when I was taught the diet by my doctor and a dietitian, and I can’t see that having changed. As far as I’m aware, fiber is a critical component of our gut health but also immune system robustness. And done right, it does nothing to affect the energy sourcing or glucose levels or whatever. I was given the rough guide of overall carbs - fibers = “final” carbs ingested. Not really sure how to translate that into English but I think it’s a common rule of thumb and you get the gist. Has that changed since?
But I’ll end on this note: Whatever I or someone say here on internet, best to double-check it all with your dietitian if doing an overseen diet, and yourself from internet if you’re doing it on your own.
Nutrition and health are no small things to play with. Our body is flexible and can survive a whole lot, in a lot of different situations, but there are prerequisites for it to thrive in a sustainable way. And there’s a fundamental distinction between just surviving/existing and thriving/being healthy.
The carbs - fibre = true carbs is accurate in some countries, not in others. If the fibre is listed at the same level of indentation as the carbs it is already removed. If the fibre is listed indented under the carbs it is included in the total fibre number and the subtraction is needed.
For example
Carbohydrate
Fibre
Or
Carbohydrates
Fibre
Fibre being critical is not the most well supported thing. There are definitely ways it could be useful, mostly by having bacteria break down the fibre into ketones which are then absorbed by the gut. This is useful because some of the ketones are quite powerfully anti inflammatory. That said, some people have gut issues like Crohn’s disease which make them unable to have fibre safely pass through their gut.
Biology is complicated, we are all stuck doing an experiment of one, but hopefully we can figure something out. I find it all fascinating but the most important thing to me is my partner currently can go whole days without a seizure. If I never understand how and why but I get to have that be the case then I am content.
If I never understand how and why but I get to have that be the case then I am content.
This is a sane way to look at it, I think, so I commend you for staying so rational in face of something so unfortunate and life-changing.
I wish the best of luck to you, it seems you know what you are doing and my input was unwarranted. But I hope you see I was coming from a good place, even if the help was both unasked for and redundant. It’s not always the case, since ketogenic diet has found some popularity that has led it to trend a little bit among those not so inclined to actually read up on the topic or consider its consequences fully. Which is why I tend to offer my two cents when I happen upon the topic, even if I’m not an expert in the subject matter
Thanks for the concern, it came across as genuine in your previous replies. I think people tend to get really locked in to having the right answer and then start to identify with their conclusion, making it part of who they are. It makes it very difficult for them to consider if there is something they are wrong about without feeling threatened. Having a good conversation like this is fairly rare online, so it has been good fun and quite enjoyable.
The response was not unwarranted or redundant. The information I have today is just information I didn’t have in the past, so if I am correct I am just there a little earlier than you. If I am not correct then I am off the right path and need to correct. Either way talking about it is good and helps to find errors in logic and evidence.
I think that something as shitty as seizures can seem life ruining or horrible and sure, they suck, but I am very lucky to have a strong and capable partner who in the face of seizures looks for solutions and has hope for the future. My partner is the one who has to have the seizures, I just get to support them and learn what does or doesn’t work. Also, their pupils sometimes do a bit of a crazy dance when one will dilate and constrict rapidly while the other slowly dilates, it looks absolutely insanely cool and while it sucks it is also really interesting, so at least there is that.
since saturated fats come with other problems themselves.
I would love to know what those problems are, from my reading of the literature the vilification of saturated fat was misattributed (i.e. the damage sugar and carbs caused got blamed on saturated fats in the lipid heart hypothesis)
new research and guidelines. To that end, I’d recommend checking out if that is indeed true, and if the new recommendations/consensus would make my point moot.
As far as I’m aware, fiber is a critical component of our gut health but also immune system robustness.
From my reading we don’t know much about the gut and fiber, we are just at the beginning of our understanding. So there are lots of assumptions that may not apply. For instance, and most relevant to the couple eating a animal based diet for seizures, fiber is not necessary for gut health - right now most papers assume a diversity of biotics in the gut are the most healthy… and the assumption is that fibre increases this diversity… which is true in a carbohydrate eating population. But in people only eating animal based foods we have case studies showing a very diverse gut… given the state of literature the assumption that fibre is essential hasn’t been demonstrated, especially in a ketogenic metabolism. One of the major benefits of fibre in a carbohydrate rich gut is providing BHB locally to the gut lining, which has major benefits, but in a ketogenic metabolism BHB is being generated constantly in the liver and gets all over the body including the gut (and also the brain).
I was given the rough guide of overall carbs - fibers = “final” carbs ingested. Not really sure how to translate that into English but I think it’s a common rule of thumb and you get the gist. Has that changed since?
That is still true, fibre is indigestible by the human gut, its the bacteria that break some of it down into SCAs which then get absorbed. Fibre does not spike glucose, however, it does block the absorption of other healthy food you eat in the same window… Again from my reading fiber isn’t essential, especially in a ketogenic metabolism, so avoiding fiber just means the food you eat is even more nutritious
But I’ll end on this note: Whatever I or someone say here on internet, best to double-check it all with your dietitian if doing an overseen diet, and yourself from internet if you’re doing it on your own.
Completely agreed, really good advice. Monitoring personal health metrics is also helpful, especially lipids, ketones, glucose, fasting insulin, etc…
Nutrition and health are no small things to play with. Our body is flexible and can survive a whole lot, in a lot of different situations, but there are prerequisites for it to thrive in a sustainable way. And there’s a fundamental distinction between just surviving/existing and thriving/being healthy.
Really appreciate the comment, thank you. Since I’ve had some education via my dietician and personal progress/experience, I’ve wanted to give my thoughts in case it helps. But here it seems you are much better up to date with these, and I’ve also got new perspective and reading from this. So thanks, again, especially for challenging my suggestions when it’s often risky here in internet as you’d often get negative pushback and most wouldn’t bother to subject themselves to that.
Monitoring personal health metrics is also helpful, especially lipids, ketones, glucose, fasting insulin, etc…
For whoever might be wondering about all this, I believe a lot of these can be tested from blood alone, which means it’s fairly fast and cheap. At least here, but here we have the benefit of a socialist democracy and its welfare system, I.e healthcare is essentially free. So especially if the latter applies to you too, you will not do any harm checking up on your levels from time to time!
For me, just a completely unrelated blood draw revealed problems with my blood glucose before it ever got to diabetes, and also revealed some (luckily minor) damage to my liver due to fatty liver. Which meant I was able, just by accidentally doing blood tests for something else, avoid these things getting worse and irreparable, and as it happens, ketogenic diet is very good for the latter (fatty liver, perhaps inner fat in general I think?), and fortunately in my case, it didn’t worsen the former either, so I managed to avoid the need for potentially expensive meds just by doing some diet education and changes, it was monitored full keto in the short term and later I was advised to return to more normal diet but with strictly reduced carbs so as to not let the problems resurface.
Just all to illustrate how just simple and quick tests like this can be accidentally good. I didn’t display any problems outwards, so I had no idea I was slowly sliding towards pre-diabetes and liver cirrchosis (really not sure how to spell that in English but I hope the word is similar and close enough).
And when doing any bigger diet changes, it’ll be good to have a baseline from before it, to compare against at different points of the diet.
So thanks, again, especially for challenging my suggestions when it’s often risky here in internet as you’d often get negative pushback and most wouldn’t bother to subject themselves to that.
The greatest joy I’ve found on lemmy is collaborative constructive discussions where people don’t agree, but are open to other people’s ideas. Thank you for being a thoughtful person.
just a completely unrelated blood draw revealed problems with my blood glucose before it ever got to diabetes, and also revealed some (luckily minor) damage to my liver due to fatty liver.
If you haven’t heard of the TG/HDL ratio as a marker for insulin resistance, its a fascinating area of research. It’s on all lipid panels and can tell people about creeping insulin problems (i.e. CVD risk, FLD risk) - https://hackertalks.com/post/5922188
ketogenic diet is very good for the latter (fatty liver, perhaps inner fat in general I think?)
Yes, all visceral, inter organ fat, inter muscular fat - resolve quickly on a ketogenic metabolism.
I was advised to return to more normal diet but with strictly reduced carbs so as to not let the problems resurface.
I’m not aware of any dangers of staying keto full time, so I don’t think the return to a carb based metabolism is necessary (but if that is what people find more sustainable, more power to them)
And when doing any bigger diet changes, it’ll be good to have a baseline from before it, to compare against at different points of the diet.
During the first day the rate dropped, halving by the end of the first day. On day 3 they dropped to a few per day. By the end of the week they were basically gone, though some are absent seizures and harder to catch without active monitoring.
As for ongoing it has been very stable. Adding in anything like milk or cheese caused as spike in seizures along with massive carb cravings. The few accidental carb exposures have been fairly obviously bad because of the seizure spikes following.
We don’t use a Continuous Glucose Monitor but honestly, no pattern this obvious requires such detailed measurements. Add carbs, get seizures. Add dairy, get seizures. Butter is dodgy, maybe an issue, but seems to be at least not obviously an issue, we will try without to be sure.
I joined in for solidarity at the start but honestly, it works for me too. I have pretty bad ADHD and cooking has always been really difficult to manage. So many different things happening at the same time with various timers, cutting foods, adding sauces, stirring, making sure it doesn’t burn, and then magically some people just deliver it all hot at the same time. Absolute madness. Instead I fire up the BBQ or air fryer and cook the meat.
I have noticed that my dandruff is way less, my skin doesn’t flake, I can focus better (not as good as meds but maybe 30% of the way there). I also dropped body fat a bit and gained some muscle, but I need to do that for other reasons too. Overall it is not an awful diet. Eat meat, add fat. The only problem is eating enough, I frequently miss my target of 3000 kcal, but I am simply not hungry much of the time.
The only problem is eating enough, I frequently miss my target of 3000 kcal, but I am simply not hungry much of the time.
If your eating fatty red meat (more fat then lean), and your not hungry - I don’t think you need to hit a arbitrary calorie target.
If you have access to a body composition scale, as long as your non-fat mass is holding steady, I’m not sure there is any concerns at all.
I have noticed that my dandruff is way less, my skin doesn’t flake, I can focus better (not as good as meds but maybe 30% of the way there). I also dropped body fat a bit and gained some muscle, but I need to do that for other reasons too. Overall it is not an awful diet.
I’m also doing the zero-carb eating pattern, in addition to what you saw my shoulder injury went away (but comes back if i cheat), my tinnitus went away, and I don’t get sunburned… weird stuff
I’ve done 7 days on a fast, water only. My partner and I were testing if their seizures would stop without food and they did.
Well no shit. That’s fascinating. So now where are you at with the problem?
Yeah, it worked really well actually. It seems that their seizures are related to sugar metabolism in the brain and switching to a fasted state enabled the production and use of ketones instead of glucose. That leas to a reduction from seizures as much as twice an hour to one or less per day most of the time. Now we (solidarity and other benefits) eat a really simple diet of mostly simple cuts of meat cooked to medium-rare as well as chicken wings and butter. The butter maybe an issue though, so we are testing removing that too after the next long fast to see if we get better results.
So down from ~30 seizures per day to maybe 1 seems like a fairly good fix and we just treat it like an allergy. No carbs, no fibre, no sugar alcohols, no artificial sweeteners, and soon maybe no butter either. Better thab seizures, good for overall health so far, and fairly sustainable. I may miss cheesecake but not as much as I don’t miss my partner having seizures all day.
On a keto based diet, you’ll need those fats. Perhaps consider something like sunflower oil instead though? Nuts also come with plenty of fats and have a lot of fiber too. Some have carbs more than others, so you’d have to check which ones fit your specific diet, but these are a great source of healthy fats and help keeping the gut biomes working well.
Edit: just to add, you could experiment with the fiber more. Long carbs have a very different effect on the body vs. short ones, so those, in moderation to keep the keto state up, could be okay for the partner too, and perhaps give more robustness/variety to the diet?
Yeah, we need fats for sure. Our thinking at this point is to aim for saturated fats as much as possible, less than 5% polyunsaturated and less than 30% mono. That said, pork belly has a tonne of fat but a surprisingly large amount of mono. Also, it is delicious.
The nuts and seeds are just not something we are doing at the moment. We will experiment with introducing small amounts of interest foods but I think seeds are largely out because of the various chemicals in the casing. Some beans may be OK after sprouting them because that takes the acid from the skin and recycles it into energy for the growing plant, but there is no similar disarming strategy for most seeds.
As for fibre, adding fibre led to a fairly serious gut issue, think blood and pain. For now fibre is banned, not allowed in the food club. Given some time it may be tested again, but the last time showed me unspeakable horrors.
I think the diet is currently robust enough for the next year. After that other things may be viable, but most likely it will be very small amounts and infrequently. If we do try fibre again it will probably be home ferments like pickles because the bacteria which break down the fibre are there in the food, so even if there is a problem with my partner digesting the fibre the bacteria there can help.
Keto fats can come from saturated fats, I strongly recommend against using industrial seed oils as a fat substitute as they increase overall body inflammation
Oh, this is new to me. If that is true, then that would still require balancing, since saturated fats come with other problems themselves. I suppose there’s no “clean” way to do anything at any rate, so it takes personal testing and monitoring. But I am fully willing to accept my recommendations might be outdated or misguided, and what you say is correct. It has been a while since I was on an overseen keto diet and things do change in time with new research and guidelines. To that end, I’d recommend checking out if that is indeed true, and if the new recommendations/consensus would make my point moot.
Either way, the fiber was a strong point when I was taught the diet by my doctor and a dietitian, and I can’t see that having changed. As far as I’m aware, fiber is a critical component of our gut health but also immune system robustness. And done right, it does nothing to affect the energy sourcing or glucose levels or whatever. I was given the rough guide of overall carbs - fibers = “final” carbs ingested. Not really sure how to translate that into English but I think it’s a common rule of thumb and you get the gist. Has that changed since?
But I’ll end on this note: Whatever I or someone say here on internet, best to double-check it all with your dietitian if doing an overseen diet, and yourself from internet if you’re doing it on your own.
Nutrition and health are no small things to play with. Our body is flexible and can survive a whole lot, in a lot of different situations, but there are prerequisites for it to thrive in a sustainable way. And there’s a fundamental distinction between just surviving/existing and thriving/being healthy.
The carbs - fibre = true carbs is accurate in some countries, not in others. If the fibre is listed at the same level of indentation as the carbs it is already removed. If the fibre is listed indented under the carbs it is included in the total fibre number and the subtraction is needed.
For example
Carbohydrate
Or
Carbohydrates
Fibre
Fibre being critical is not the most well supported thing. There are definitely ways it could be useful, mostly by having bacteria break down the fibre into ketones which are then absorbed by the gut. This is useful because some of the ketones are quite powerfully anti inflammatory. That said, some people have gut issues like Crohn’s disease which make them unable to have fibre safely pass through their gut.
Biology is complicated, we are all stuck doing an experiment of one, but hopefully we can figure something out. I find it all fascinating but the most important thing to me is my partner currently can go whole days without a seizure. If I never understand how and why but I get to have that be the case then I am content.
This is a sane way to look at it, I think, so I commend you for staying so rational in face of something so unfortunate and life-changing.
I wish the best of luck to you, it seems you know what you are doing and my input was unwarranted. But I hope you see I was coming from a good place, even if the help was both unasked for and redundant. It’s not always the case, since ketogenic diet has found some popularity that has led it to trend a little bit among those not so inclined to actually read up on the topic or consider its consequences fully. Which is why I tend to offer my two cents when I happen upon the topic, even if I’m not an expert in the subject matter
Thanks for the concern, it came across as genuine in your previous replies. I think people tend to get really locked in to having the right answer and then start to identify with their conclusion, making it part of who they are. It makes it very difficult for them to consider if there is something they are wrong about without feeling threatened. Having a good conversation like this is fairly rare online, so it has been good fun and quite enjoyable.
The response was not unwarranted or redundant. The information I have today is just information I didn’t have in the past, so if I am correct I am just there a little earlier than you. If I am not correct then I am off the right path and need to correct. Either way talking about it is good and helps to find errors in logic and evidence.
I think that something as shitty as seizures can seem life ruining or horrible and sure, they suck, but I am very lucky to have a strong and capable partner who in the face of seizures looks for solutions and has hope for the future. My partner is the one who has to have the seizures, I just get to support them and learn what does or doesn’t work. Also, their pupils sometimes do a bit of a crazy dance when one will dilate and constrict rapidly while the other slowly dilates, it looks absolutely insanely cool and while it sucks it is also really interesting, so at least there is that.
I would love to know what those problems are, from my reading of the literature the vilification of saturated fat was misattributed (i.e. the damage sugar and carbs caused got blamed on saturated fats in the lipid heart hypothesis)
There isn’t much consensus, but the tide is turning - https://hackertalks.com/post/17259951
From my reading we don’t know much about the gut and fiber, we are just at the beginning of our understanding. So there are lots of assumptions that may not apply. For instance, and most relevant to the couple eating a animal based diet for seizures, fiber is not necessary for gut health - right now most papers assume a diversity of biotics in the gut are the most healthy… and the assumption is that fibre increases this diversity… which is true in a carbohydrate eating population. But in people only eating animal based foods we have case studies showing a very diverse gut… given the state of literature the assumption that fibre is essential hasn’t been demonstrated, especially in a ketogenic metabolism. One of the major benefits of fibre in a carbohydrate rich gut is providing BHB locally to the gut lining, which has major benefits, but in a ketogenic metabolism BHB is being generated constantly in the liver and gets all over the body including the gut (and also the brain).
That is still true, fibre is indigestible by the human gut, its the bacteria that break some of it down into SCAs which then get absorbed. Fibre does not spike glucose, however, it does block the absorption of other healthy food you eat in the same window… Again from my reading fiber isn’t essential, especially in a ketogenic metabolism, so avoiding fiber just means the food you eat is even more nutritious
Completely agreed, really good advice. Monitoring personal health metrics is also helpful, especially lipids, ketones, glucose, fasting insulin, etc…
I couldn’t agree more, well said.
Really appreciate the comment, thank you. Since I’ve had some education via my dietician and personal progress/experience, I’ve wanted to give my thoughts in case it helps. But here it seems you are much better up to date with these, and I’ve also got new perspective and reading from this. So thanks, again, especially for challenging my suggestions when it’s often risky here in internet as you’d often get negative pushback and most wouldn’t bother to subject themselves to that.
For whoever might be wondering about all this, I believe a lot of these can be tested from blood alone, which means it’s fairly fast and cheap. At least here, but here we have the benefit of a socialist democracy and its welfare system, I.e healthcare is essentially free. So especially if the latter applies to you too, you will not do any harm checking up on your levels from time to time!
For me, just a completely unrelated blood draw revealed problems with my blood glucose before it ever got to diabetes, and also revealed some (luckily minor) damage to my liver due to fatty liver. Which meant I was able, just by accidentally doing blood tests for something else, avoid these things getting worse and irreparable, and as it happens, ketogenic diet is very good for the latter (fatty liver, perhaps inner fat in general I think?), and fortunately in my case, it didn’t worsen the former either, so I managed to avoid the need for potentially expensive meds just by doing some diet education and changes, it was monitored full keto in the short term and later I was advised to return to more normal diet but with strictly reduced carbs so as to not let the problems resurface.
Just all to illustrate how just simple and quick tests like this can be accidentally good. I didn’t display any problems outwards, so I had no idea I was slowly sliding towards pre-diabetes and liver cirrchosis (really not sure how to spell that in English but I hope the word is similar and close enough).
And when doing any bigger diet changes, it’ll be good to have a baseline from before it, to compare against at different points of the diet.
The greatest joy I’ve found on lemmy is collaborative constructive discussions where people don’t agree, but are open to other people’s ideas. Thank you for being a thoughtful person.
If you haven’t heard of the TG/HDL ratio as a marker for insulin resistance, its a fascinating area of research. It’s on all lipid panels and can tell people about creeping insulin problems (i.e. CVD risk, FLD risk) - https://hackertalks.com/post/5922188
Yes, all visceral, inter organ fat, inter muscular fat - resolve quickly on a ketogenic metabolism.
I’m not aware of any dangers of staying keto full time, so I don’t think the return to a carb based metabolism is necessary (but if that is what people find more sustainable, more power to them)
100%
Do you use a CGM or ckm to monitor glucose and ketones? Have you noticed a pattern?
During the 7 day fast did seizures still happen at the 1/day rate?
I’m really happy to read how your doing the same intervention with your partner, that’s great and very thoughtful
During the first day the rate dropped, halving by the end of the first day. On day 3 they dropped to a few per day. By the end of the week they were basically gone, though some are absent seizures and harder to catch without active monitoring.
As for ongoing it has been very stable. Adding in anything like milk or cheese caused as spike in seizures along with massive carb cravings. The few accidental carb exposures have been fairly obviously bad because of the seizure spikes following.
We don’t use a Continuous Glucose Monitor but honestly, no pattern this obvious requires such detailed measurements. Add carbs, get seizures. Add dairy, get seizures. Butter is dodgy, maybe an issue, but seems to be at least not obviously an issue, we will try without to be sure.
I joined in for solidarity at the start but honestly, it works for me too. I have pretty bad ADHD and cooking has always been really difficult to manage. So many different things happening at the same time with various timers, cutting foods, adding sauces, stirring, making sure it doesn’t burn, and then magically some people just deliver it all hot at the same time. Absolute madness. Instead I fire up the BBQ or air fryer and cook the meat.
I have noticed that my dandruff is way less, my skin doesn’t flake, I can focus better (not as good as meds but maybe 30% of the way there). I also dropped body fat a bit and gained some muscle, but I need to do that for other reasons too. Overall it is not an awful diet. Eat meat, add fat. The only problem is eating enough, I frequently miss my target of 3000 kcal, but I am simply not hungry much of the time.
If your eating fatty red meat (more fat then lean), and your not hungry - I don’t think you need to hit a arbitrary calorie target.
If you have access to a body composition scale, as long as your non-fat mass is holding steady, I’m not sure there is any concerns at all.
I’m also doing the zero-carb eating pattern, in addition to what you saw my shoulder injury went away (but comes back if i cheat), my tinnitus went away, and I don’t get sunburned… weird stuff