I've been pacing the room waiting for someone else to comment so that I wouldn't have to go first!
My mother and both grandmothers all suffered from dementia. I'm old enough (72) that I'm already seeing signs of cognitive decline in some among my peer group. Parkinson's is also prevalent.
Five years ago, my wife was taking a proton pump inhibitor daily for what was thought to be GERD - gastroesophageal reflux disease. The package insert for PPIs advises not to take them for more than 14 days, but they are available OTC and many doctors advise patients to take them more or less indefinitely. By reducing stomach acids, these drugs compromise lower intestinal health, reducing protection against pathogenic bacteria, absorption of certain vitamins, particularly B12, and ultimately increasing the permeability of the gut wall. Studies were coming out linking PPIs to dementia.
At SeaTac airport, I read an article in Outside Magazine about Rich Roll and his vegan diet. My wife figured it was worth a shot. By the time we landed on Kauai, we were vegan.
She stopped taking PPIs, and the GERD symptoms went away.
Oh, and I cut my cholesterol in half.
Not saying it's right for everyone, but it sure was for us. Seriously thinking about a gut biome test - anyone done one?
Yeah, I struggle with the microbiome testing, personally and also whether to recommend to others. I've done a couple with various alternative and functional doctors, and I'm fascinated with the results. But it's also SO complicated that I don't know how actionable it is for most people, particularly without the guide of a healthcare provider. I do think more and more research is coming that provides guidance. But many doctors are still in a camp that says, "none of this is proven, don't do it." So yeah...I don't have an answer there, but I think if you're the curious type and willing to spend the money, knowing that the next steps might not be clear....then go for it!
Can we talk about glyphosate, aka RoundUp? Glyphosate was developed as a weed killer. When applied to weeds, it would kill them. Any that fell on the ground would be neutralized by soil bacteria.
But then it was discovered that glyphosate is useful on cereal crops as a dessiccant. Sprayed directly on the crop, it causes it to dry (die) for harvest at a controllable time. Sprayed directly on the crop. That you are going to eat.
While the direct effect on human health has been studied, there's way too little data on the effects on the flora and fauna of the gut biome, and it can't be ruled out that some gluten intolerance is actually glyphosate intolerance.
In the meantime, I try to buy organic whenever possible.
Sigh, another topic that I think is so important and really sticky. I know from personal experience that the further you go down the "toxins in our food and clothes and air" inquiry path, the more it seems like everything in modern life is toxic. But yeah, glyphosate in particular seems to have permeated our world, there are studies showing that it even shows up in human breast milk. I also buy organic but am pissed that it's only a choice for people who have the money.
So much of this has to do with structural problems in our food supply. Once again, we're left struggling to find personal solutions to a structural problem. It seems like that's a universal truth these days. And I have a feeling that that's a feature, not a bug.
Thanks as always, Rae, for asking thoughtful questions and providing space for me to draft essays in your comments!
Wow John! Roundup sprayed on grain crops ? Is this only in the USA or countries where climate ( or more recently changing) patterns have brought this about? I’m in Australia… hopefully our farmers are not doing this. I doubt they do given huge acreages , the cost of tractor fuels & scarcity of rural labour.
Wouldn’t save me from imported grain products though.
Yes, I’ve often wondered if all the food & gluten intolerances, allergies & gut problems stem from how food is produced and processed. Was hardly a thing when I was younger… 40 odd years ago. 🤔
Well that certainly may account for some if the health issues that seem to have exploded over recent decades, physical, mental & behavioural. Pesticides are toxins & all living things are negatively affected by toxins.
With research in the field of Genetics being presently to the forefront it seems, there are quite a few revelations emerging in relation to inherited health issues. I am a friend who’s sister’s research in conjunction with others has isolated a gene based condition which can induce early childhood death. That research has led to a mother who lost 4 children, convicted of murder ( having already served about 10 years of a life sentence) being released from jail.
One has to wonder about the possible preventative or gut enhancing effects of fermented foods food in various cultures/ parts of the world. Eg; Korean Kimchee Vs German sauerkraut?
Yes, a preservative way to keep food available over long winters etc but a byproduct being the maintenance of gut flora so the return to a greater range of fresh foods, veges etc could be an easier transition? 🤔
Welp... Dementia runs in the family, and I've had a range of gut problems which continue to worsen, so that's fun. I feel both incredibly eager to learn all there is to know about this stuff, and also pretty powerless to help my body, especially considering most of my experiences with doctors in the healthcare system have been dismissive at best.
Thankfully I'm now living in a country which functional public health, and the difference is staggering. Feeling a mix of hope that I can finally do something to help myself, and urgency as my body seems to find creative ways to fall apart.
I'm in East Asia, where the work culture is intense but the public services are high quality. Also, teaching English is in high demand and well-paid, so that helps a lot. Having to talk about bodies in another language is challenging, but most doctors also know English anyway. And uh, yes for the memoir title! I'm gonna keep that in mind...
Definitely a worthwhile focus here, Rae. I don’t know if I mentioned this when we spoke, but COVID-19 intractably altered my gut biome. Nothing I have tried in these 3.5 years - all kinds of diets, supplements, etc. - has moved the needle on this in any way. I had gut biome testing and it came back showing dysbiosis and leaky gut. For months now I’ve been gluten and dairy free, but no real change. All of these studies coming out do worry me a little regarding future serious illnesses. But I legit couldn’t be eating any better than I am right now, so I can’t really worry too much 🤷
I hear you, Amy. I have not been able to make much progress on my gut issues, and these studies worry me, too. With no clear help in sight for my gut, I can't help but feel a bit doomed.
Totally relate to both these comments, and this exact dynamic always gives me pause when publishing research summaries. Like, ok, really scary, what the hell do I do? Gut stuff is sooo complicated and really hard to impact and we really don't know much.
I am in the same boat--family history of neurodegeneration plus gut dysbiosis (SIBO) and other issues. I tend to take comfort in the fact that the research is being done. Maybe it can't really help me now, maybe it never will, but also maybe it will be able to help my generation or future generations. So yeah, I guess I do hold some hope that all this will eventually go somewhere, but not waiting around for it to do so soon.
I have many reasons to be interested in this topic. My wife will be undergoing IVIG as she has been diagnosed with MADSAM, an autoimmune disease that produces tingling and numbness. If a specific microbiome link can be identified, that will be very useful to know.
I have a history of IBS. So, I need to be very vigilant about my susceptibility to nerodiseases.
And my late mother founded the following two IBD Centers at Weill Cornell (I think I'm permitted to brag about my mother!) I'm fascinated by this research., which us still in its infancy and holds tremendous promise.
Rae, if ever I can be helpful with your own research, happy to make an introduction to the Dr. who runs the Research Institute.
David, reading this comment I also realize that you had commented before about your wife to see if I had any resource (I think!) and I forgot to respond. The answer is I don't, I'm not familiar with MADSAM. I'm so sorry she's going through this.
And your mom sounds rad! You can definitely brag about her.
Thanks so much for the offer--I may take you up on that in the future!
Terrifying but amazing if true-because then we can work on treating it. My mother developed dementia at about 70 (possibly it was earlier). Her sister had Parkinson's. Mom was diagnosed with Alzheimer's, but it could have also been vascularly related. She smoked, drank pretty heavily (consistently), and didn't really get much exercise though she also didn't really eat much. I can imagine that her gut was not healthy. She also, interestingly, developed colon cancer half way through the dementia period and lost tons of weight. We did surgery and it didn't come back, but I expect that that was not at all good? I have been doing lots of things to avoid her fate, wondering if it was due to her smoking, or due to the Parkinson's connection with family or or or. At least I can not smoke, drink far far less, and take care of my gut. Here's hoping.
Yes, who knows - the hard thing about all this newish information is it has not yet reached a point where we can actually take a clear action. My overall takeaway from so many studies is that paying attention to my gut health seems important. Genes also play a role so we can't forget that--it's not just on us :)
Super interesting. It does seem that from almost everything I've read so much goes back to gut health, which is frustrating when you're trying all the things and not getting the best of results. I've also read studies and articles that connect Alzheimer's specifically (I'm not sure about dementia) with poor glucose control. I've even heard it referred to as Type 3 diabetes. Watching several of our grandparents age and suffer from dementia and Parkinsons there does seem to be a definite correlation to quality of diet and how severe things got. So it makes me think that blood sugar control, as diverse a gut biome as possible and a lot of fat to help with brain health are all going to be important things to keep focusing on. I try to focus on what I can control, because the genetic piece is pretty depressing... But hey! Epigenetics are cool and things are not static, so even if it doesn't heal me, maybe it'll be passing something better on to my kids. I'm hoping! I haven't lost faith in the body's innate desire to heal when it's given the right stuff, even if that ends up limited in some way. I'm trying to remind myself me and my body are on the same team :)
The reason GERD is so high on general practitioner’s hit list is the strong link with esophageal and stomach cancer. Incidence of this previously rare cancer is increasing in Europe/US/Australia and at younger ages. This cancer is one where mortality stats are woeful and have not improved in a couple of decades. Its what killed my twin brother at 45.
So I have some complicated thoughts & feelings about antacids, ignoring GERD and dementia (which my Mum has).
According to WHO high blood pressure and diabetes are both significant factors in the increase in dementia, alongside living long enough to get it.
I am so sorry to hear about your brother and your mom, that is so much. Thanks for sharing the information about GERD, I didn't know about this connection. It does seem like acid reflux is something that is typically dismissed as small and solvable with TUMS. Interesting to know about that information from WHO.
It’s complicated. H. pylori bacteria are strongly implicated in each of the stages in the path from GERD through esophageal cancer. PPIs have been available for decades and are widely prescribed and purchased over the counter but seem to have made little dent in cancer rates. Data needed!
Indeed. Marshall & Warren who identified the role of H. pylori are Australians, I just read that some other research has suggested H. pylori can in some cases be protective against adenocarcinomas. As far as I know my brother didn’t have ulcers, though he’d had reflux and indigestion for years. His cancer was only identified when his leg swelled up and it wasn’t from a DVT.
Echoing Rae's sentiments about your brother and your mom. It seems crazy to me that such a relatively common and apparently set of pathologies can be so poorly understood.
All this info coming out about the gut brain axis is fascinating and useful. I say useful because, to a great degree, we can control what goes into our system and look to create change by improving the health of our microbiome.
I am familiar with this, and other, research. My Mom had advanced cognitive decline so I’ve explored why...why did that happen? One reason may be (aside from the smoking and drinking) that she chose to use artificial sweetener for 50+ years which destroys the gut.
I'm sorry to hear about your mom. I am really hopeful that all this new information will lead to new effective therapeutics, though it does seem like the road ahead is long.
Sorry about your mother’s situation. With good intent she used the artificial sweeteners over plant originated sugar. And she trusted as we all do that products are “safe” for us to consume.
The Baby Boomer generation, and their health has effectively become a longevity study on the influence of so many substances. Of course because the “ sample size” is so big the issues they suffer which may be the same as that suffered by earlier generations makes those health issues jump out at us so more vividly. That, plus the fact that in decades gone, many people never got seen by medicos or received diagnoses. All just put down to “ old age” & causes not looked for.
Yes, yes and yes Pamela! So many things have made me stop and pause when I see how the generation before me has aged. I think the next generations will try to do it differently but, as you said, we all have that intention, just as the Baby Boomers did.
I've been pacing the room waiting for someone else to comment so that I wouldn't have to go first!
My mother and both grandmothers all suffered from dementia. I'm old enough (72) that I'm already seeing signs of cognitive decline in some among my peer group. Parkinson's is also prevalent.
Five years ago, my wife was taking a proton pump inhibitor daily for what was thought to be GERD - gastroesophageal reflux disease. The package insert for PPIs advises not to take them for more than 14 days, but they are available OTC and many doctors advise patients to take them more or less indefinitely. By reducing stomach acids, these drugs compromise lower intestinal health, reducing protection against pathogenic bacteria, absorption of certain vitamins, particularly B12, and ultimately increasing the permeability of the gut wall. Studies were coming out linking PPIs to dementia.
At SeaTac airport, I read an article in Outside Magazine about Rich Roll and his vegan diet. My wife figured it was worth a shot. By the time we landed on Kauai, we were vegan.
She stopped taking PPIs, and the GERD symptoms went away.
Oh, and I cut my cholesterol in half.
Not saying it's right for everyone, but it sure was for us. Seriously thinking about a gut biome test - anyone done one?
Super interesting, thanks for sharing John.
Yeah, I struggle with the microbiome testing, personally and also whether to recommend to others. I've done a couple with various alternative and functional doctors, and I'm fascinated with the results. But it's also SO complicated that I don't know how actionable it is for most people, particularly without the guide of a healthcare provider. I do think more and more research is coming that provides guidance. But many doctors are still in a camp that says, "none of this is proven, don't do it." So yeah...I don't have an answer there, but I think if you're the curious type and willing to spend the money, knowing that the next steps might not be clear....then go for it!
I tend to be an early adopter! From my Microsoft beta tester days, I think.💩
Can we talk about glyphosate, aka RoundUp? Glyphosate was developed as a weed killer. When applied to weeds, it would kill them. Any that fell on the ground would be neutralized by soil bacteria.
But then it was discovered that glyphosate is useful on cereal crops as a dessiccant. Sprayed directly on the crop, it causes it to dry (die) for harvest at a controllable time. Sprayed directly on the crop. That you are going to eat.
While the direct effect on human health has been studied, there's way too little data on the effects on the flora and fauna of the gut biome, and it can't be ruled out that some gluten intolerance is actually glyphosate intolerance.
In the meantime, I try to buy organic whenever possible.
Sigh, another topic that I think is so important and really sticky. I know from personal experience that the further you go down the "toxins in our food and clothes and air" inquiry path, the more it seems like everything in modern life is toxic. But yeah, glyphosate in particular seems to have permeated our world, there are studies showing that it even shows up in human breast milk. I also buy organic but am pissed that it's only a choice for people who have the money.
So much of this has to do with structural problems in our food supply. Once again, we're left struggling to find personal solutions to a structural problem. It seems like that's a universal truth these days. And I have a feeling that that's a feature, not a bug.
Thanks as always, Rae, for asking thoughtful questions and providing space for me to draft essays in your comments!
Wow John! Roundup sprayed on grain crops ? Is this only in the USA or countries where climate ( or more recently changing) patterns have brought this about? I’m in Australia… hopefully our farmers are not doing this. I doubt they do given huge acreages , the cost of tractor fuels & scarcity of rural labour.
Wouldn’t save me from imported grain products though.
Yes, I’ve often wondered if all the food & gluten intolerances, allergies & gut problems stem from how food is produced and processed. Was hardly a thing when I was younger… 40 odd years ago. 🤔
I think just in the USA. Gluten intolerance is a USA thing too.
Well that certainly may account for some if the health issues that seem to have exploded over recent decades, physical, mental & behavioural. Pesticides are toxins & all living things are negatively affected by toxins.
With research in the field of Genetics being presently to the forefront it seems, there are quite a few revelations emerging in relation to inherited health issues. I am a friend who’s sister’s research in conjunction with others has isolated a gene based condition which can induce early childhood death. That research has led to a mother who lost 4 children, convicted of murder ( having already served about 10 years of a life sentence) being released from jail.
I'll keep making my kombucha then.
Couldn't hurt :)
One has to wonder about the possible preventative or gut enhancing effects of fermented foods food in various cultures/ parts of the world. Eg; Korean Kimchee Vs German sauerkraut?
Yes, a preservative way to keep food available over long winters etc but a byproduct being the maintenance of gut flora so the return to a greater range of fresh foods, veges etc could be an easier transition? 🤔
Yes, fresh veggies all the way! You may be interested in my other Substack, The Bridge Cottage Way, talking about growing food & seasonal eating?
Welp... Dementia runs in the family, and I've had a range of gut problems which continue to worsen, so that's fun. I feel both incredibly eager to learn all there is to know about this stuff, and also pretty powerless to help my body, especially considering most of my experiences with doctors in the healthcare system have been dismissive at best.
Thankfully I'm now living in a country which functional public health, and the difference is staggering. Feeling a mix of hope that I can finally do something to help myself, and urgency as my body seems to find creative ways to fall apart.
"Creative ways to fall apart" - love that phrase and it definitely describes experiences I've had. Future memoir title? :)
Where do you live now, if you don't mind sharing?
I'm in East Asia, where the work culture is intense but the public services are high quality. Also, teaching English is in high demand and well-paid, so that helps a lot. Having to talk about bodies in another language is challenging, but most doctors also know English anyway. And uh, yes for the memoir title! I'm gonna keep that in mind...
Definitely a worthwhile focus here, Rae. I don’t know if I mentioned this when we spoke, but COVID-19 intractably altered my gut biome. Nothing I have tried in these 3.5 years - all kinds of diets, supplements, etc. - has moved the needle on this in any way. I had gut biome testing and it came back showing dysbiosis and leaky gut. For months now I’ve been gluten and dairy free, but no real change. All of these studies coming out do worry me a little regarding future serious illnesses. But I legit couldn’t be eating any better than I am right now, so I can’t really worry too much 🤷
I hear you, Amy. I have not been able to make much progress on my gut issues, and these studies worry me, too. With no clear help in sight for my gut, I can't help but feel a bit doomed.
Totally relate to both these comments, and this exact dynamic always gives me pause when publishing research summaries. Like, ok, really scary, what the hell do I do? Gut stuff is sooo complicated and really hard to impact and we really don't know much.
I am in the same boat--family history of neurodegeneration plus gut dysbiosis (SIBO) and other issues. I tend to take comfort in the fact that the research is being done. Maybe it can't really help me now, maybe it never will, but also maybe it will be able to help my generation or future generations. So yeah, I guess I do hold some hope that all this will eventually go somewhere, but not waiting around for it to do so soon.
I have many reasons to be interested in this topic. My wife will be undergoing IVIG as she has been diagnosed with MADSAM, an autoimmune disease that produces tingling and numbness. If a specific microbiome link can be identified, that will be very useful to know.
I have a history of IBS. So, I need to be very vigilant about my susceptibility to nerodiseases.
And my late mother founded the following two IBD Centers at Weill Cornell (I think I'm permitted to brag about my mother!) I'm fascinated by this research., which us still in its infancy and holds tremendous promise.
Rae, if ever I can be helpful with your own research, happy to make an introduction to the Dr. who runs the Research Institute.
https://robertsinstitute.weill.cornell.edu
https://weillcornell.org/ibdcenter
David, reading this comment I also realize that you had commented before about your wife to see if I had any resource (I think!) and I forgot to respond. The answer is I don't, I'm not familiar with MADSAM. I'm so sorry she's going through this.
And your mom sounds rad! You can definitely brag about her.
Thanks so much for the offer--I may take you up on that in the future!
Terrifying but amazing if true-because then we can work on treating it. My mother developed dementia at about 70 (possibly it was earlier). Her sister had Parkinson's. Mom was diagnosed with Alzheimer's, but it could have also been vascularly related. She smoked, drank pretty heavily (consistently), and didn't really get much exercise though she also didn't really eat much. I can imagine that her gut was not healthy. She also, interestingly, developed colon cancer half way through the dementia period and lost tons of weight. We did surgery and it didn't come back, but I expect that that was not at all good? I have been doing lots of things to avoid her fate, wondering if it was due to her smoking, or due to the Parkinson's connection with family or or or. At least I can not smoke, drink far far less, and take care of my gut. Here's hoping.
Yes, who knows - the hard thing about all this newish information is it has not yet reached a point where we can actually take a clear action. My overall takeaway from so many studies is that paying attention to my gut health seems important. Genes also play a role so we can't forget that--it's not just on us :)
Super interesting. It does seem that from almost everything I've read so much goes back to gut health, which is frustrating when you're trying all the things and not getting the best of results. I've also read studies and articles that connect Alzheimer's specifically (I'm not sure about dementia) with poor glucose control. I've even heard it referred to as Type 3 diabetes. Watching several of our grandparents age and suffer from dementia and Parkinsons there does seem to be a definite correlation to quality of diet and how severe things got. So it makes me think that blood sugar control, as diverse a gut biome as possible and a lot of fat to help with brain health are all going to be important things to keep focusing on. I try to focus on what I can control, because the genetic piece is pretty depressing... But hey! Epigenetics are cool and things are not static, so even if it doesn't heal me, maybe it'll be passing something better on to my kids. I'm hoping! I haven't lost faith in the body's innate desire to heal when it's given the right stuff, even if that ends up limited in some way. I'm trying to remind myself me and my body are on the same team :)
Thanks for sharing! I didn't realize that there was a connection between diabetes and neurodegeneration, fascinating.
So interesting Rae.
The reason GERD is so high on general practitioner’s hit list is the strong link with esophageal and stomach cancer. Incidence of this previously rare cancer is increasing in Europe/US/Australia and at younger ages. This cancer is one where mortality stats are woeful and have not improved in a couple of decades. Its what killed my twin brother at 45.
So I have some complicated thoughts & feelings about antacids, ignoring GERD and dementia (which my Mum has).
According to WHO high blood pressure and diabetes are both significant factors in the increase in dementia, alongside living long enough to get it.
I am so sorry to hear about your brother and your mom, that is so much. Thanks for sharing the information about GERD, I didn't know about this connection. It does seem like acid reflux is something that is typically dismissed as small and solvable with TUMS. Interesting to know about that information from WHO.
It’s complicated. H. pylori bacteria are strongly implicated in each of the stages in the path from GERD through esophageal cancer. PPIs have been available for decades and are widely prescribed and purchased over the counter but seem to have made little dent in cancer rates. Data needed!
Indeed. Marshall & Warren who identified the role of H. pylori are Australians, I just read that some other research has suggested H. pylori can in some cases be protective against adenocarcinomas. As far as I know my brother didn’t have ulcers, though he’d had reflux and indigestion for years. His cancer was only identified when his leg swelled up and it wasn’t from a DVT.
Echoing Rae's sentiments about your brother and your mom. It seems crazy to me that such a relatively common and apparently set of pathologies can be so poorly understood.
The CDC has just switched its data provider for COVID in wastewater to Verily, a Google startup. https://yourlocalepidemiologist.substack.com/p/wastewater-switch
Verily hopes to use very large datasets to look at some of these health issues. As it happens, my daughter works there.
Yay, data! Though I recognise that culture and politics always complicate the data!
Yup. And there are major issues around confidentiality and so on. But the technology to find answers is there.
All this info coming out about the gut brain axis is fascinating and useful. I say useful because, to a great degree, we can control what goes into our system and look to create change by improving the health of our microbiome.
I am familiar with this, and other, research. My Mom had advanced cognitive decline so I’ve explored why...why did that happen? One reason may be (aside from the smoking and drinking) that she chose to use artificial sweetener for 50+ years which destroys the gut.
Thank you for this excellent article Rae.
I'm sorry to hear about your mom. I am really hopeful that all this new information will lead to new effective therapeutics, though it does seem like the road ahead is long.
Thanks.
Yes the road seems long yet we have only known about the microbiome for a short time so hopefully it will move faster than we think.
Sorry about your mother’s situation. With good intent she used the artificial sweeteners over plant originated sugar. And she trusted as we all do that products are “safe” for us to consume.
The Baby Boomer generation, and their health has effectively become a longevity study on the influence of so many substances. Of course because the “ sample size” is so big the issues they suffer which may be the same as that suffered by earlier generations makes those health issues jump out at us so more vividly. That, plus the fact that in decades gone, many people never got seen by medicos or received diagnoses. All just put down to “ old age” & causes not looked for.
Yes, yes and yes Pamela! So many things have made me stop and pause when I see how the generation before me has aged. I think the next generations will try to do it differently but, as you said, we all have that intention, just as the Baby Boomers did.