I was diagnosed with Crohn's disease when I was 13. I was on various 3x-daily anti-inflammatory medications; doctors said I would be on them the rest of my life.
I started going to therapy as an adult and made a lot of progress in my mental health. I went off my medications 5 years ago and have been healthy since without intervention - I give a lot of credit to this work. I don't think we fully understand the role of the mind/emotions in health; my advice to anyone suffering from IBS and the like is not to forget the mind component to overall health. When you're suffering in your head, it can sometimes manifest in your body.
I also have Crohn's, been on anti-TNF and doing well for the past 12 years.
I think it's absolutely universally accepted that stress is a major factor in autoimmune and inflammatory disease. Reducing stress by working on mental health definitely has the potential to reduce inflammation levels in some people to the point where you need no medication.
But like everything it's not a silver bullet.
Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump. I've often wondered if there is something of an explanation there for the rise in rate of Crohn's diagnosis in countries as they develop.
> Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump.
Not Chron's but a related disease. For me the symptoms are strongly correlated with how embarrassing it would be if I had to go. So hiking in the mountains is pretty relaxed (unless it's a date or something), just find a spot off trail. In the chair at the dentist with instruments in your mouth and a bib on? All of a sudden I've gotta go.
Is interesting. I wonder if this is because in absence of stress, less chortisol is released and the body accumulates less "toxics" by that, at a level that can still manage to clean with common periods of rest. When people sleeps it cleans garbage chemicals from the brain, chemicals that may trigger inflamation. When people with Crohns wake up naturally in Sunday or sleep one hour more, their symptoms for the day would improve? If they drink all night and go to bed at 6hAM on a Saturday, those symptoms would be worse?
Just a speculation that came to me after reading the article. I could be wrong, but I would make a interesting test probably IMO.
> Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump.
AFAIK I don't have Crohn's or any inflammatory issues, but boy is this an accurate description of me. My theory has always been that my need to use the bathroom was strongly correlated with coffee and food. When I'm home I'm constantly drinking coffee and snacking, when I'm away from home I'm not.
I don't have Crohn's, but I and many people I know experience "not having to take a dump" for various reasons; for me, traveling. The first few days of a trip I usually don't need to go.
It's pretty obvious to me that asthma and colitis ulcerosa are stress-related. I had asthma for as long as I remember. I'm allergic to pollen and dust, but one of the triggers is high stress situations as well.
I started having symptoms of colitis ulcerosa when I was 18 and had final high school exams. I was under tons of stress. I started to care much less about such things and had years-long remission. There were only 2 other flare-ups - when I was passing driving licence test, and when I had the first big series of exams at university.
Basically every time I drove myself very hard I had another episode. And it's not fun to suddenly shit yourself in public transport let me tell you :/
It's been over 20 years since last time I had colitis ulcerosa flare-up. But, in the meantime I was also diagnosed with autoimmune liver disease (PSC), and I'm not sure this one is stress-related. It seems to me it just ticks away at my liver and even very relaxed lifestyle doesn't help. I'm very hopeful about new drugs for this, as the only alternative seems to be to wait for inevitable liver transplant later in life.
As a counter-example (and not at all to doubt your story), I had my first (and worst) UC flare when I was literally the happiest and most content I've ever been in my life. I had my second, a few years later, when I was on a religious retreat, and under absolutely no stress whatsoever!
My UC is entirely diet related.
A doctor friend and I think we have - as amateurs, mind: his specialty is very far from GI, but he reads and shares with me every UC paper that's published; I have no medical training, but am a motivated auto-didact on this subject - identified three or maybe four etiologies which are lumped together as "UC". The best gastro doc I've seen kinda shrugged, and said (roughly) "probably so, but they all respond to the same drugs in the same ways, so there's not much motivation to draw distinctions".
I'm not quite sure what to think about that answer. I do think it's good for patients to identify their own triggers.
My (non-bio) mom has UC and her one big flare up in life was high school exam time she said (she still has nightmares about that time). Since then only small episodes easily treated with prednisolone, but often easily attributed to stress as well. Like days before an important work event: problems. Team members being ill and she has to cover: problems.
I personally have Crohns and PSC as well, and I think less stress helped; but I am on Rinvoq (INN-Upadacitinib) and eat psyllium husks and still have occasional diarrhea, what helps A TON however is sport. I skateboard (and whenever I find the time I go HARD), and 1-2 days after I am always good, colon wise. When I dont skate for a week and eat slightly fatty i have problems, but when skate on a friday and then order opne of those disguting cheap pizzas from that greek place i am still good (i dont do this often but it happens).
Why I have these autoimmun diseases is also an interesting question. My biological parents are both good in that regard, so is my extended family. However I do know my bio-mom smoked while pregnant, and i passively smoked in the household up until I was 12 (and then started smoking at 14, quit with 18)
Exercise is also a big one. It can be difficult to exercise when you lack energy, but it's critical for your long-term health, both physical and mental. The bidirectional gut-brain axis is poorly studied but seems incredibly powerful compared to the importance that medicine has traditionally given it.
I recommend being careful with Maté. He's worth listening to inasmuch as he has unique experience and some clearly legitimate grievances with the medical establishment, but he also seems indifferent to the limits of his own knowledge. In my (layman's) opinion he tends to be too credulous toward fringe theories/therapies and to make sweeping, radical generalizations that don't comport with the broader evidence base. For instance, his views on ADHD were called "worse than wrong" by Russell Barkley, who is arguably the leading expert on ADHD [1].
Can you speak more about the type of therapy you undertook? I have a few non-threatening but otherwise annoying autoimmune disorders and my bloodwork, diet, and exercise are all good but have wondered if there is some underlying stress that could be exacerbating things. I’ve considered therapy but honestly have no idea where to start as there are a lot of different modalities and each are expensive (both in money and time) to spend 12-26 weeks exploring with sufficient depth before determining whether or not it “worked” and then trying another.
After reading Pollan’s “How to Change your Mind” I have wondered if Psychedelics could be the answer to resetting pathways.
I think you have to actually try out a modality or two before landing on the therapy that works best for you. Somatic trauma work was truly incredible for me because I was so locked in my mind - but it’s less evidence-based than say CBT which is proven to work for all sorts of mental health.
Pollan is great! I’d be happy to chat more with you - send me a PM.
Regulating your immune system can mean many things. Gabor Mate and Robert Sapolsky for example just talk about how too much stress can affect your immune system and if you have the genes, you may be more susceptible than others.
The good news of all this is that immune therapies are entering their golden age. Hopefully that means in the future you can be cured of these immune based diseases as we find the immune cell culprits like macrophages here.
For auto-immune diseases, the question is always whether suppressing over-activity will cause more disease than it prevents.
In this case, the pathway affects macrophages, leucocyte activation and migration, and production of 3 inter-leukin's and other cytokines -- which doesn't offer much hope at avoiding off-target effects. As they mention, this gene is shared as far back as other proto-humans, so it's likely essential.
And they didn't really need this finding to consider targeting (toxic) MEK at macrophages using antibodies, particularly since GI drugs can be made relatively non-absorbable, further reducing off-target effects. But since these are chronic diseases with wide variations between patients of severity and tissue involvement, and since macrophage activity is relatively acute, the narrow therapeutic range of a MEK-based drug is far from ideal: too much opportunity for overdose.
So I hope this stimulates more investigation of the ETS2-mediated pathways, but I don't hold out much hope for a MEK + Ab drug for IBD.
God I hope something comes out of this. I have IBD, and it's very difficult to put into words people can relate to how debilitating, uncomfortable, inconvenient, embarrassing, and painful these conditions are.
My son has Crohn’s disease. He was very thin and underweight and under height compared to his peers. My wife and I tried to understand what we did wrong raising our son. Did we feed him too much cheerios. Did we give him too much sugar, bread. Somehow the modern diet is not suiting my son. I feel very guilty for giving the chronic disease to my son with the food choices I made as a parent.
Nothing in this research appears to indicate fault of any kind; rather, a genetic cause.
> Lee’s research team “stumbled” on the discovery after investigating a “gene desert”, a stretch of DNA on chromosome 21 that does not code for proteins, which has previously been linked to IBD and other autoimmune diseases. Writing in Nature, they describe how they found a section of DNA that behaves like a volume control for nearby genes. This “enhancer” was seen only in immune cells called macrophages where it boosted a gene called ETS2 and ramped up the risk of IBD.
As parents we make plenty of real mistakes; blaming ourselves for unavoidable stuff isn't worth adding to the pile.
There are millions of kids out there eating nothing but toaster waffles who don't have Crohn's. Your son's disease is not your fault — it's bad luck. It's certainly possible that eating a specific way could help manage his symptoms, but that's different from his diet (past or current) being the root cause.
I have IBD. Any sensible doctor will tell you that there seem to be no link between diet and IBD, apart from certain food possibly aggravating symptoms.
No use whatsoever to blame oneself for something like this.
The idea behind there being no link between diet and IBD is nonsensical and patently unscientific.
From a layman's point of view, IBD is a single disease. However, in reality, it's an umbrella term for a disease with a common set of symptoms and histological changes that can have a variety of underlying etiologies. Some people are more genetically susceptible, with family histories; others with no family history can undergo changes in gut microbiota composition, genome methylation, among other environmental factors that influence development and progression of the disease.
There are a bevy of peer-reviewed studies that show links between better diets/exercise and an increase in SCFA-producing microbiome components, which are known to suppress inflammatory cytokines and improve innate immune mucosal defense systems and free radical scavenging, promoting gut healing. On the flip side, plenty of people with poor diets and a lack of fiber are at a far higher risk of developing IBD or some other autoimmune disease (like SLE or RA), even certain cancers. It's why one of the most common strategies to address mild IBD and IBS cases is to begin an elimination diet and see which foods are triggers for inflammation.
You are correct that for many, diet isn't the reason why people have IBD. But it does play a huge role in symptom burden and the overall severity and prognosis of the condition. This isn't even considering the effect of environmental contaminants (such as PFOA and BPA) on IBD development, which has been well-known for over a decade now.
Ignoring science for a bit, just from the perspective of common sense, the idea of what you put in your body not affecting you is absurd and ridiculous. It's an idea pushed by gastroenterologists who don't want to risk upset patients who would rather not change their entire diet and lifestyle to mitigate their disease, for a small portion of whom the changes will not work anyways due to an underlying genetic component to the disease. Still, there's nothing to lose and everything to gain from adopting a healthier lifestyle.
I'm sorry your son has Crohn's disease. You did nothing wrong. I don't enjoy how people immediately blame themselves or others for "eating wrong foods" when they encounter a new disease. Some diseases will be caused by diet (or viruses, or bacteria), but many others are not. Metabolic versus genetic causes. Consider Celiac's disease: genetic or metabolic? It's a genetic deficiency exacerbated by a metabolic pathway.
Also watch for lactose intolerance, it's easily controlled but can cause discomfort when eating (I'm not saying your son has exclusively this, but rather in addition to).
I have Crohn 's disease and it's never occurred to me to fault my parents. It is a genetic disease, and I can only hope that the doctors you've worked with have helped you to understand the basics so you can educate yourself and help your son.
There's been a lot of really encouraging progress in the 15+ years since my diagnosis, but there are still a lot of unknowns. I got very little support in the dietary side of things other than the infamous elimination diet approach. It took a while for me to dial it in, but I did and am very rarely sick these days, now that I've discovered my own food sensitivities.
As much as you may want to solve this problem for him, it will take an immense amount of maturity on his part to want to discover and understand his limitations and to create and stick to a sustainable lifestyle.
Don't feel bad there are huge corporations and even the government pushing some foods. And the risk gene is rare, like less than 2%
Have you tried getting your son off all milk products for a few weeks? And really try and avoid non organic wheat, as it is harvested with roundup which is implicated with leaky gut syndrome.
"More than half a million people in the UK have inflammatory bowel disease, the two main forms of which are Crohn’s disease and ulcerative colitis, with at least 7 million affected globally" - either "at least" is doing a lot of work, or something is going on in the UK.
"Crohn's disease is found in all racial groups worldwide. However, historically, the highest prevalence rates have been reported in white populations, particularly those of North America and Europe, with significantly lower rates seen in black and Asian populations within these or any other foreign country"
What about Arthiris? There's some link between UC and RA. I get both flare up at the same time, and I use the same medication (Azathioprine) to keep both in remission.
It sounds like ETS2 for sure has implications for spondylitis, although unclear to me whether it's a direct link or just because a lot of people who have IBD also have spondylitis. If it's the former, then my guess would be that there's a link to other types of arthritis as well.
Readit News
I started going to therapy as an adult and made a lot of progress in my mental health. I went off my medications 5 years ago and have been healthy since without intervention - I give a lot of credit to this work. I don't think we fully understand the role of the mind/emotions in health; my advice to anyone suffering from IBS and the like is not to forget the mind component to overall health. When you're suffering in your head, it can sometimes manifest in your body.
Gabor Maté talks a lot about this connection: https://www.youtube.com/watch?v=1fPQ7Oc44SU
I think it's absolutely universally accepted that stress is a major factor in autoimmune and inflammatory disease. Reducing stress by working on mental health definitely has the potential to reduce inflammation levels in some people to the point where you need no medication.
But like everything it's not a silver bullet.
Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump. I've often wondered if there is something of an explanation there for the rise in rate of Crohn's diagnosis in countries as they develop.
Not Chron's but a related disease. For me the symptoms are strongly correlated with how embarrassing it would be if I had to go. So hiking in the mountains is pretty relaxed (unless it's a date or something), just find a spot off trail. In the chair at the dentist with instruments in your mouth and a bib on? All of a sudden I've gotta go.
Just a speculation that came to me after reading the article. I could be wrong, but I would make a interesting test probably IMO.
AFAIK I don't have Crohn's or any inflammatory issues, but boy is this an accurate description of me. My theory has always been that my need to use the bathroom was strongly correlated with coffee and food. When I'm home I'm constantly drinking coffee and snacking, when I'm away from home I'm not.
I started having symptoms of colitis ulcerosa when I was 18 and had final high school exams. I was under tons of stress. I started to care much less about such things and had years-long remission. There were only 2 other flare-ups - when I was passing driving licence test, and when I had the first big series of exams at university.
Basically every time I drove myself very hard I had another episode. And it's not fun to suddenly shit yourself in public transport let me tell you :/
It's been over 20 years since last time I had colitis ulcerosa flare-up. But, in the meantime I was also diagnosed with autoimmune liver disease (PSC), and I'm not sure this one is stress-related. It seems to me it just ticks away at my liver and even very relaxed lifestyle doesn't help. I'm very hopeful about new drugs for this, as the only alternative seems to be to wait for inevitable liver transplant later in life.
My UC is entirely diet related.
A doctor friend and I think we have - as amateurs, mind: his specialty is very far from GI, but he reads and shares with me every UC paper that's published; I have no medical training, but am a motivated auto-didact on this subject - identified three or maybe four etiologies which are lumped together as "UC". The best gastro doc I've seen kinda shrugged, and said (roughly) "probably so, but they all respond to the same drugs in the same ways, so there's not much motivation to draw distinctions".
I'm not quite sure what to think about that answer. I do think it's good for patients to identify their own triggers.
Stomach ulcers were "stress related" until whoops: turns out it's H. Pylori infections, and can be cured easily with antibiotics.
I personally have Crohns and PSC as well, and I think less stress helped; but I am on Rinvoq (INN-Upadacitinib) and eat psyllium husks and still have occasional diarrhea, what helps A TON however is sport. I skateboard (and whenever I find the time I go HARD), and 1-2 days after I am always good, colon wise. When I dont skate for a week and eat slightly fatty i have problems, but when skate on a friday and then order opne of those disguting cheap pizzas from that greek place i am still good (i dont do this often but it happens).
Why I have these autoimmun diseases is also an interesting question. My biological parents are both good in that regard, so is my extended family. However I do know my bio-mom smoked while pregnant, and i passively smoked in the household up until I was 12 (and then started smoking at 14, quit with 18)
So maybe thats part of it too
Its very interetsing all that, also scary
[1] https://www.youtube.com/watch?v=bO19LWJ0ZnM
After reading Pollan’s “How to Change your Mind” I have wondered if Psychedelics could be the answer to resetting pathways.
Pollan is great! I’d be happy to chat more with you - send me a PM.
The good news of all this is that immune therapies are entering their golden age. Hopefully that means in the future you can be cured of these immune based diseases as we find the immune cell culprits like macrophages here.
Dead Comment
In this case, the pathway affects macrophages, leucocyte activation and migration, and production of 3 inter-leukin's and other cytokines -- which doesn't offer much hope at avoiding off-target effects. As they mention, this gene is shared as far back as other proto-humans, so it's likely essential.
And they didn't really need this finding to consider targeting (toxic) MEK at macrophages using antibodies, particularly since GI drugs can be made relatively non-absorbable, further reducing off-target effects. But since these are chronic diseases with wide variations between patients of severity and tissue involvement, and since macrophage activity is relatively acute, the narrow therapeutic range of a MEK-based drug is far from ideal: too much opportunity for overdose.
So I hope this stimulates more investigation of the ETS2-mediated pathways, but I don't hold out much hope for a MEK + Ab drug for IBD.
Dead Comment
> Lee’s research team “stumbled” on the discovery after investigating a “gene desert”, a stretch of DNA on chromosome 21 that does not code for proteins, which has previously been linked to IBD and other autoimmune diseases. Writing in Nature, they describe how they found a section of DNA that behaves like a volume control for nearby genes. This “enhancer” was seen only in immune cells called macrophages where it boosted a gene called ETS2 and ramped up the risk of IBD.
As parents we make plenty of real mistakes; blaming ourselves for unavoidable stuff isn't worth adding to the pile.
Happiness does not come from beating yourself up, but can come embracing and making the best of a situation.
No use whatsoever to blame oneself for something like this.
From a layman's point of view, IBD is a single disease. However, in reality, it's an umbrella term for a disease with a common set of symptoms and histological changes that can have a variety of underlying etiologies. Some people are more genetically susceptible, with family histories; others with no family history can undergo changes in gut microbiota composition, genome methylation, among other environmental factors that influence development and progression of the disease.
There are a bevy of peer-reviewed studies that show links between better diets/exercise and an increase in SCFA-producing microbiome components, which are known to suppress inflammatory cytokines and improve innate immune mucosal defense systems and free radical scavenging, promoting gut healing. On the flip side, plenty of people with poor diets and a lack of fiber are at a far higher risk of developing IBD or some other autoimmune disease (like SLE or RA), even certain cancers. It's why one of the most common strategies to address mild IBD and IBS cases is to begin an elimination diet and see which foods are triggers for inflammation.
You are correct that for many, diet isn't the reason why people have IBD. But it does play a huge role in symptom burden and the overall severity and prognosis of the condition. This isn't even considering the effect of environmental contaminants (such as PFOA and BPA) on IBD development, which has been well-known for over a decade now.
Ignoring science for a bit, just from the perspective of common sense, the idea of what you put in your body not affecting you is absurd and ridiculous. It's an idea pushed by gastroenterologists who don't want to risk upset patients who would rather not change their entire diet and lifestyle to mitigate their disease, for a small portion of whom the changes will not work anyways due to an underlying genetic component to the disease. Still, there's nothing to lose and everything to gain from adopting a healthier lifestyle.
Dead Comment
Also watch for lactose intolerance, it's easily controlled but can cause discomfort when eating (I'm not saying your son has exclusively this, but rather in addition to).
There's been a lot of really encouraging progress in the 15+ years since my diagnosis, but there are still a lot of unknowns. I got very little support in the dietary side of things other than the infamous elimination diet approach. It took a while for me to dial it in, but I did and am very rarely sick these days, now that I've discovered my own food sensitivities.
As much as you may want to solve this problem for him, it will take an immense amount of maturity on his part to want to discover and understand his limitations and to create and stick to a sustainable lifestyle.
That appears to overwhelmingly not be the case, at least in the United States.
https://www.snopes.com/fact-check/wheat-toxic/
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"Crohn's disease is found in all racial groups worldwide. However, historically, the highest prevalence rates have been reported in white populations, particularly those of North America and Europe, with significantly lower rates seen in black and Asian populations within these or any other foreign country"
Dead Comment
https://www.nature.com/articles/s41586-024-07501-1