Crohn’s Disease: Is the Cold Chain Hypothesis Still Hot? | Hacker News Reader

Crohn’s Disease: Is the Cold Chain Hypothesis Still Hot?

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CD is definitively associated with the occidental modern way of life 3. If the cold chain hypothesis is valid, the emergence of CD must be parallel to the development of industrial and domestic refrigeration. Figure 1A compares the annual incidence of the disease and the household equipment rate in several countries. There is a temporal correlation between these variables. It should be noted, however, that in a given country the disease begins to be detectable not at the time when refrigerators begin to be sold, but only when about 50% of households are equipped. This observation is counter-intuitive.

It's an interesting hypothesis and I like the thinking. We need more of this kind of investigation.

The problem I see is that refrigeration should reduce the incidence of food poisoning and malnutrition generally and generally improve survivability of vulnerable populations. So one possibility is that people who used to die mysteriously in early childhood are now living long enough to be diagnosed with various ailments.

In other words, maybe modern life does cause Crohn's or maybe it just lets such people survive and get diagnosed and learn to live with their condition.

This reminds me of what I read about Nicotine and how it was thought to prevent Alzheimer's, but I believe it was just the fact those smoking tobacco had a lower chance to live to the age to be diagnosed or develop it.

Motorcycles prevent old age.

Old age prevents older age.

Birth is the leading cause of death.

I think you are confusing with Parkinsons, and there is a co-relation with dopamine receptors, and it's proven. Also, this being a Crohn's post, smoking also has benefits in curtailing Inflammatory Bowel Disease, but not Crohn's

edit: more specifically smoking decreases the incidence of ulceraive colitis (an IBS)

UC is not an IBS (irritable bowel syndrome), it is an IBD (inflammatory bowel disease) of which I believe crohns is as well.

Many years ago on a discussion list for a really deadly condition, someone talked about a child in the family dying really young and no one knew why and everyone was so heartbroken and felt so guilty. And I guess later someone else was diagnosed with this very deadly condition and eventually someone suggested to the mother of the child "Maybe the child also had this deadly genetic disorder and they were just not diagnosed. Maybe you didn't do anything wrong." And the mother was finally able to make her peace with the mysterious death of this child, who had been maybe five years old.

I think the person who told the story was a lot older than me. Children dying young tends to be a thing in less developed countries and people don't necessarily know why.

My family tree from a mere two generations ago is filled with kids who died under the age of 5 - some are mundane but most are undiagnosed. They just know the symptoms that were fatal not the cause. 1960s and earlier. That’s not at all that long ago.

Survivorship bias

https://en.wikipedia.org/wiki/Survivorship_bias

Fun fact: strangely enough, there are two conditions for which smoking is known to be a protective factor. Parkinson's disease, and Ulcerative Colitis (UC).

Interestingly, though Crohn's Disease (CD) and UC are strikingly similar forms of IBD, nicotine has the opposite effect on both. Nicotine will increase inflammation in CD and reduce it in UC, through the a7 receptor and up/down-regulation of Treg cells: https://www.jimmunol.org/content/187/5/2677

Smoking also makes you less likely to contract covid but more likely to have serious outcomes from it if you do.

Something about the immune reaction to the smoke being beneficial to avoid infection and the long term lung damage making it worse when infected.

My suspicion is it’s a byproduct of coating the lungs with tar. You sacrifice lung function for a slightly more robust physical barrier. The obvious test for immune system response would be if chewing tobacco users would see similar resistance to infection.

Hopefully this will eventually clear things up: https://clinicaltrials.gov/ct2/show/NCT04896918

Cigarette smoking definitely does not provide with a better physical barrier, and does not "coat" the surface of your lungs with tar. There could be some effect from reduced surface area (see: emphysema, although typically patients with this condition, or even smokers generally, will have an increased risk of infection), but my bet is on some nicotine receptor effect. These are quite immunomodulatory.

That’s why I was so interested in the study of smokeless tobacco users.

Anyway, I don’t mean the tar is the physical barrier, inflammation response plus common changes to the extracellular matrix should both result in a physical barrier. The compensative increased respiratory rate seems like it would offset reduced surface area, but these changes are more complicated than that.

Also, it’s increased risk of detected infection, but patients without symptoms are rarely tested for viral disease at this scale. That makes comparisons very tricky.

Everything in a relative of mine who smokes house is coated with tar. They regularly burn out computers because they get so impacted with tar covered lint. I find it very likely their lungs are covered in tar as well - moreso I don’t understand how they could possibly not be.

This same relative has Crohn’s which is why I am here reading this.

I thought it was lowered expression of the receptors covid-19 binds to (known condition among smokers) ace-2... Because smokers have suppressed ace-2 while smoking but a higher baseline; they are protected from getting it because when they are in public they are likely smoking and protected but once they get it they get very severe COVID...

I mean it's all kind of a just-so story. Iirc Omeprazole which also depresses ace-2 failed as a prophylactic treatment

Is that true when adjusted for close human connection? My understanding of smoker culture is they are less likely to be in close quarters with other people, unless those others are also smoking. And then they tend to be outside.

Smoking is also ridiculously prevalent among schizophrenics, and nicotine seems to help with the negative symptoms.

I smoked just long enough to get addicted, but successfully weaned myself onto nicotine lozenges some years back. From what I've read, nicotine itself is fairly safe, but I wonder what it's helping/hurting (I have several rare diseases.)

MAOI

What do you mean?

https://en.m.wikipedia.org/wiki/Monoamine_oxidase_inhibitor

Tobacco contains monoamine oxidase inhibitors which might act as anti-depressants, also this is very anecdotal but I have a sensory processing disorder (visual snow syndrome) and my concentration has gone to shit ever since I stopped smoking.

For colitis, it doesn't seem to simply be the nicotine as studies using nicotine patches saw little or no effect. This suggests the smoke itself may have some effect.

There is a summary at https://www.crohnsandcolitis.org.uk/about-crohns-and-colitis....

I haven’t seen nicotine as being protective for alzheimers, but it is protective for Parkinson’s and Ulcerative colitis. In fact during medical school I saw a young patient who was trying to get healthy to help deal with her autoimmune issues, and had stopped smoking, inadvertently likely triggering a massive flare of UC

I can personally attest this is true. Nicotine does help with ulcerative colitis. I buy Swedish snus which is far less toxic that American tobacco.

Why not just vape?

Vaping is certainly an option.

That's relatively easy to correct for.

This is an animal study, which doesn't have that bias: https://www.sciencedaily.com/releases/2016/09/160920160635.h...

Basically, this is why I vape. Early onset dementia represents much higher existential risk than vaping does.

I am going to add this to my list of examples for survivorship bias. https://en.wikipedia.org/wiki/Survivorship_bias

I wonder too if it has to do with the eating. People who eat less and intermittently fast have lower rates of Alzheimer’s.

The thought is when you fast your body recycles excess proteins that build up on your brain, reducing brain plaque buildup over time.

Nicotine is a known appetite suppressant.

It most often begins in young adults and lasts a lifetime.

Second sentence in the paper.

Biochemist: agreed, "we now live long enough to suffer from it" works well to explain the rising prevalence of cancer, but not that of auto-immune diseases.

For auto-immune diseases, the consensus (if we can call it that) mostly revolves around the hygiene hypothesis. Refrigeration is one aspect of this, but other things that fall in this category are the use of soap, rising cleanliness standards, disinfectants, aseptic methods, positive pressure toilets and good sewage systems, vaccines, antibiotics, not breastfeeding as much (not directly a hygiene issue, but breastfeeding transfers passive immunity to a child with a developing immune system, which has an effect not unlike being exposed to a different spectrum of microbes), caesarian births, always eating very fresh meats and vegetables, etc.

There is a grain of truth to "what doesn't kill you makes you stronger" (but don't take that idea too far, and please do wash your hands and do get vaccinated, for god's sake), and the essence of the hygiene hypothesis, in comp sci / ML terms, is that it's a training set problem.

Edit: it's unclear to me why people are downvoting this. This is my area of expertise, so I'd be curious to know what people find objectionable in this comment.

If it's a training set problem, wouldn't it be possible to give a "vaccine" consisting of a reasonable mix of antigens from time to time? Has this been tried?

That's how many vaccines work... dead versions of pathogens.

It's not completely inconceivable that we will one day have therapeutic approaches in that line of reasoning, but it's also not quite that simple.

There is a critical period during infancy and early childhood when the immune system goes through a number of critical maturation processes. Afaik, once that's done there's no going back to a perfectly fresh slate.

After puberty, for example, your thymus (an important site for T cell maturation) begins shrinking and eventually all that remains of the organ is basically non-functional traces of scar tissue. That is not to say that T cell maturation doesn't occur afterwards, but it is a particularly striking example of the irreversible age-related change we can be talking about.

Another less-obvious example is that children born by cesarian have a different skin and gut flora through the rest of their lives than children who are born through the vaginal canal: the initial colonization of the skin with a different set of bacteria has some degree of permanence, though it is also somewhat plastic. Yet another example, children who are breastfed tend to have fewer food allergies or auto-immune diseases (atopy, generally) than children who are fed formula. Early conferral of passive immunity through maternal antibodies secreted in breast milk selects for different populations of gut microbes, and again there is some degree of permanence to this. In both cases, the differences are measurable throughout adulthood!

Everything epgui said above. Just to add another line of argument: thanks to sequencing, we also know there are a lot of germs that we simply can't culture. We used to suspect that, but now we know that. Most general hygiene methods are non-discriminitive, so as cleanliness goes up, opportune exposures to rare edge cases go down, and probably go down fast. We are becoming, in a sense, a species of oligoculture hosts.

There's people who engage in Helminth therapy (purposefully getting parasitic infections like a hookworm) for purposes of inflammatory disorders. I don't know much about it but enough people take it seriously

Bringing this to the article, the authors are outside that consensus. They believe that Crohn's is an immune response directed toward a bacterium, rather than toward the self.

The hypothesis in the paper is that Crohn's isn't autoimmunity and that improving hygiene might prevent or treat it.

Edit: They do mention a training set factor, but at the level of population genetics instead of at the level of an individual developing immune system. Their evidence is that a history of the plague, rather than hygiene, promoted a genetic immune system weakness that made people more likely to survive the plague, but that Crohn's is a consequence of that today. A related example that comes to mind is the prevalence of sickle cell anemia in regions with malaria.

It reminds me of how poverty and gun violence dramatically reduced after Roe v. Wade because organizations like Planned Parenthood started installing themselves in minority communities and advocating heavily for abortions.

minority communities or poorer communities? also any link to a study, seems very interesting

Correlation != causation. You should be extra skeptical when there are convenient political points to be gained when implying such causations. Also, freakonomics is just entertainment, not science.

Poverty and gun violence also reduced after they took lead out of gas. https://www.motherjones.com/environment/2016/02/lead-exposur...

From your article:

> When Rudy Giuliani ran for mayor of New York City in 1993, he campaigned on a platform of bringing down crime and making the city safe again.

> Since 1960, rape rates had nearly quadrupled, murder had quintupled, and robbery had grown fourteenfold.

> Giuliani won the election, and he made good on his crime-fighting promises [...]

> The results were dramatic. In 1996, the New York Times reported that crime had plunged for the third straight year, the sharpest drop since the end of Prohibition. Since 1993, rape rates had dropped 17 percent, assault 27 percent, robbery 42 percent, and murder an astonishing 49 percent.

I'm not sure what point you were trying to make, but nobody disputes that Giuliani's policies on crime were extremely effective.

Maybe they had some undesirable side-effects for the minority communities that were most affected by the policies. That should definitely be addressed. But those communities became safer and more affluent in the meantime.

Also from the same article:

> In city after city, violent crime peaked in the early ’90s and then began a steady and spectacular decline. Washington, DC, didn’t have either Giuliani or Bratton, but its violent crime rate has dropped 58 percent since its peak. Dallas’ has fallen 70 percent. Newark: 74 percent. Los Angeles: 78 percent. > > There must be more going on here than just a change in policing tactics in one city. But what?

The point is that correlation is not causation. Assuming that abortion led to a decrease in crime is an assumption. So is assuming that removing lead from the environment led to a decrease in crime. So is assuming that one politician’s methods led to a decrease in crime. In fact, that is probably the least likely, given the fact that it happened everywhere.

The same decrease in crime that occurred under Giuliani occurred in other cities around the country and the world which had very different policing policies. See, for example,

https://pubs.aeaweb.org/doi/pdf/10.1257/089533004773563485

Or, of course, Kevin Drum's article.

TLDR: People do dispute that Giuliani's policies on crime were extremely effective.

> but nobody disputes that Giuliani's policies on crime were extremely effective.

In fact, they were so effective that they reduced the crime rates in the entire country!

There's plenty of people disputing the efficacy of NY's policies.

https://www.nber.org/digest/jan03/what-reduced-crime-new-yor...

Many people dispute it.

Giuliani made a lot of political hay out of it for sure, and compstat introduced some accountability to the notorious NYPD bureaucracy. IMO it was a combo of getting rid of the dead wood running the previous administration and demographic changes. (Ie the crack wars were “won” by dominant gangs and the lead gas kids were dead or in jail.)

I’d suggest reading about Jack Maple, who was a transit cop in the then separate NY Transit Police. (This was the sea change as his rise to prominence happened due to housecleaning.) He pioneered the methods that became compstat, which started as a revolution and ultimately turned into a yet another bullshit metrics program.

RTFA, it’s entire point is that the decline was present in cities without Giuliani as well. The correlation was with reduction in lead, not dim-witted politicians on the left nor the right.

I wouldn’t call it “just entertainment”; it’s perspective, which is an awesome logical device. They’re absolutely not giving hard, peer-reviewed facts, but the mindset is totally valid as a logical tool for the arsenal.

Pirates reduce Global Warming. Fact[1]

[1]: https://www.forbes.com/sites/erikaandersen/2012/03/23/true-f...

> advocating heavily for abortions

That seems like a wild claim. Evidence?

Access to birth control could be a much larger factor. Catholics are famously anti birth control, and Protestants only began accepting it starting in 1940, so the 1973 roe v wade decision correlated with a generation which had more societal acceptance of birth control. Many Protestant denominations are still divided on the issue.

https://en.m.wikipedia.org/wiki/Protestant_views_on_contrace...

This is a well criticized study, but regardless of how dubious it is, the claim was never focused on "minority" communities and as far as I know Planned Parenthood activities are neither quantified nor included in correlations found.

> It reminds me of how poverty and gun violence dramatically reduced after Roe v. Wade

Poverty and gun violence rates also dramatically reduced after we stopped putting lead in gasoline.

It's far more likely this was caused by a reduction in leaded gas. You see the same drop in crime around the same time in other countries, even though Roe v Wade only happened in the U.S. and across different countries it was close to the leaded gas ban.

> refrigeration should reduce the incidence of food poisoning

According to the paper, the implicated Yersinia are able to survive the cold at refrigeration temperatures and in vacuum packaging. Due to longer storage times and reduced competition, the bacteria are able to proliferate. In the genetically susceptible, they trigger an "exacerbated inflammatory response".

Interesting, the paper also posits mutations in descendants of those who survived the genetically close black plague causing bacteria might cause them to be susceptible.

Also the evolutionary "eye of the needle" of the Black Death could give rise to the mutations in European alleles making them sensitive.

As someone with Crohn's (diagnosed at 17, now have an ostomy), I often see a lot of conflation with IBS, which IBD is most definitely not.

It's interesting, I've been part of some research studies, I've been through a number of surgeries, and I've literally tried every medical treatment that's available (and a couple that may be someday...) with some very good IBD research docs. And I've also seen that diet and lifestyle choices can definitely affect the severity of a flare, especially the feelings and symptoms.

But they cannot 'cure' Crohn's or put it in remission. I currently have inflammation in my mouth, and unfortunately you can't just slice it out to take care of the problem like you can parts of the gut ;)

Anyways, all that to say these studies come and go, a few have a sliver of promise or offer some new route for a researcher to go, but in my few decades of Crohn's experience, I've grown to accept that short of a very significant stroke of luck, there probably won't be a cure in my lifetime.

And if there is, it'll probably crack the nut on a ton of other autoimmune diseases too. Hopefully!

Just curious: have you tried infecting yourself with parasitic worms that suppress your immune system? That always sounded pretty cool…

Yes, I have tried that with hookworms.

How did it go? A friend of my was investigating it for a condition he has.

Have you tried giving things time off to heal with an elemental diet? It wasn't pleasant, but I survived off powdered amino acids, oil capsules, honey and cocoa for a couple months. The commerical/hospital preparations are for tube feeding patients and outrageously expensive.

Look into nicotinic acid, a form of niacin. The "flushing" one. If you supplement with it start slow, get used to the burning sensation. It goes away after a few times.

Avoid biologics unless you absolutely have to

I'll tell you something as someone who doesnt have crohn's but has suffered with IBS and undiagnosed permanent abdominal pain for 25 years:

Yes... we've tried everything, including stupid diets and even FMT. If you've read it on the internets we have likely also . We are mostly aware and thinking 24/7 about our disease. So yeah, whenever someone randomly tells us to try X or Y random thing, most likely we've already tried it, or have pondered it and decided not to. So most similar comments are usually annoying.

I have/had severe Crohn's which I have successfully managed to remission through basically diet and only diet (I had allergic reactions to the common drugs).

90% of people who tell me they've 'tried' dieting haven't really. Have you actually strictly followed an elimination diet for at least a year?

Most people say something like they stopped eating bread for three weeks and it didn't help. But that's not good data. One must eliminate every single source of gluten and dairy (or do something like SCD diet) by studying the ingredient labels on everything they consume, and do this for 1-2 years, with zero cheat days. Most people can't do this.

> Most people can't do this.

Which is why

> have pondered it and decided not to

Yes, if biologics work for you with minimal side effects, great. Unfortunately if I get another infusion I will die, so I had to go down another route.

I have Ulcerative Colitis and biologics are working great for me, I take Simponi.

For how long has it worked so far? I ask because I've known several people who have had certain drugs for UC work for a while, quite well even, and then just randomly stop working, prompting them to seek yet another treatment or blend of treatments. Do you also use any other medication for it?

have you tried telling the people who say "have you tried..." to eff off?

Heh, at this point in my Crohn's journey it's basically background noise.

I can only imagine. The dumbest thing I've ever heard in my life was when a co worker said I should treat my deteriorating heart valves "naturally".

> they cannot 'cure' Crohn's or put it in remission

My partner has had CD since 8 years old. Twice in her life she has been described as "in remission". One being now, as she hasn't had any active disease for a few years.

> And I've also seen that diet and lifestyle choices can definitely affect the severity of a flare

I though the current understanding is there is no dietary intervention for CD. It certainly didn't work on my partner and none of her specialists said it would make any difference.

But I have noticed doctors in different countries have different opinions, so maybe that's the reason?

What ended up "beating" her CD was Stelara (ustekinumab) which is available through the Australian health system (our country of residence) but not in New Zealand (our home country) because their research showed it doesn't work.

I think you may have read the intended message a bit differently; I was trying to state that diet and lifestyle choices can't cure Crohn's or put it in remission; they may ease symptoms but they don't magically heal people (like some even in this thread would suggest).

I'm currently on Stelara but it seems like it might not be doing much for me :( I'm glad your partner's had better luck with it!

Apologies, I did read it wrong.

I'm sorry to hear it hasn't worked out for you so far. I hope you find some relief in the future, it's a hell of a disease.

Ankylosing Spondylitis sufferer here. I wish you the best of health and may HLA-B27 eff right off (assuming you are HLA-B27 positive). I empathize with another comment you made about "Have you tried...?"

Yes. We have. (Advil, Indocin, Sulfasalazine, Meloxicam, Diclofenac Sodium, Remicade, Humira, Enbrel, Curcumin, Vitamin D and also A-Z, Gluten Free, Vegan, Paleo, Whole30, Mediterranean, Yoga, Pilates, Acupuncture, Stem cell injections, Steroid injections, Physical Therapy, Glucosamine, Glutamine, BCAA's, Probiotics, Probiotic foods, electro stim therapy, heat, cold, stretching, Meditation, CBD, CBT, starch free, and probably other stuff I'm forgetting)

Not meant to be a negative comment, a lot of stuff helps to some degree. No cures though. to anyone wondering what worked and didnt, just work with your doctor and experiment with your doctor's permission, and be skeptical but hopeful.

Did you see that guy on, i think on the AS reddit, who did extreme saunaing? You seem to be willing to try things, maybe it's something for you ;)

hah I have not but I'd like to have a sauna in my future home regardless. Currently I'm in an apt and going to a sauna in nyc is not super appealing to me (cost, friction in working it into my day with having to go somewhere, etc), but when I move to the suburbs I definitely want to get one.

He's not using a normal sauna, but something with heaters/lamps. I'm not dedicated enough to try it myself: https://www.reddit.com/r/PsoriaticArthritis/comments/es5w6f/...

There also are commercial "apartment saunas", which are basically a tent with some heaters ready-made. Not sure if they fit the specific requirements here, but less improvisation.

Have you tried fungicides?

>And I've also seen that diet and lifestyle choices can definitely affect the severity of a flare, especially the feelings and symptoms.

Which diets have you tried?

>But they cannot 'cure' Crohn's or put it in remission.

I'm certainly in remission.

>I've grown to accept that short of a very significant stroke of luck, there probably won't be a cure in my lifetime.

The cure exists, it's just not politically acceptable. Society would rather pump you up with crazy meds like remicade or chemotherapy like methotrexate than just do the cure. It took me years to find the cure because politics has poisoned the entire subject. The general advice given for crohns is literally not helping, and in fact probably making things worse.

So what, may I ask, was the cure for you? I consider hearing people out to be a useful thing

It wouldn't surprise me if refrigeration contributes to the development of Crohn's disease.

The causes can be multi-variate and anecdotally, from my own research, microbes (yeast, bacteria, fungi) all seem to play a key role. Anything that disturbs the balance in pathogenic ways can lead to dysfunction, especially antibiotics, but also a lack of plant cell walls in our diets.

Everybody is slightly different, not just genetically, but in terms of the diversity of bacteria.

There have been a few people who have managed to put Crohn's disease into remissions with raw kefir produced at home (the ones at store are not comparable) as well as with Visbiome, a probiotic produced in the lab with many studies behind it. And I've also heard the carnivore diet for short durations may help.

There doesn't seem to be a consistent way to treat Crohn's disease and obviously, medicine to control flares is a must if the situation demands it.

It does seem like a great many gut and autoimmune issues are somehow related to the diversity of microbes though and I look forward to more clinical research like this.

We need all the help we can get.

Likewise on the welcoming of any bit of research! I ended up in the hospital about a year ago and found out it was the result of Crohn’s (34 years old).

Another hospitalization, countless diet attempts, medications, and biologics, finally found something that worked, other than prednisone.

If there is one thing I realized, it is that the effectiveness of treatments really is dependent on each individual’s biology. Possible foods that trigger me were completely fine for others I had spoken with, and vice versa.

It’s encouraging to see as much research as there is and makes me hopeful not just for myself, but for others with the same condition (many who have it far worse than me).

I got Crohn's about the same age (34).

A couple years later at 36 I'm now on better health than I've ever been. I responded well to a biologic (vedolizumab aka Entyvio). But I also did exclusive enteral nutrition for months concurrently to help push me the edge. These days I eat a lot of sweet potatoes and chicken, with relatively little processed food.

I also feel like theracurmin helps me https://pubmed.ncbi.nlm.nih.gov/32412598/

Hah, funny enough Entyvio was my first biologic and I didn’t respond to it! I’ve been on a biosimilar of Remicade for about 2 months now and for the first time in over a year, am completely off prednisone and in remission!

Congrats on finding something that worked and hoping for the best for your continued remission!

How did you conduct your enteral nutrition? As far as I know, it's not common practice to begin a course of enteral feeding for anything other than a few specific circumstances. I've also heard that it decreases the number of bacterial species that the gut houses from thousands to just several hundred; which can have health impacts that we don't yet fully understand. Can you talk more about this?

I used Ensure Plus chocolate with no added fiber. Regular Ensure in the cans has some prebiotic added fiber which was tough on me

EEN is a well-described and effective therapy for Crohn's. Used less in adults, and much less common in North America for whatever reason (awareness is probably kinda low). The trials establishing it happened back in the 1980s IIRC.

Decreasing microbes is posited as one of the possible mechanisms of action IIRC. See the CD-TREAT diet https://pubmed.ncbi.nlm.nih.gov/30550821/

Ah; so that was a sort of elemental diet (if you've heard of them) for you. How much credit would you assign to those courses in helping overcome your disease?

I think it helped a lot and I did a bit of a mini crossover trial where I did the enteral nutrition for a few weeks and then not.

And yeah the elemental formula I tried is https://www.integrativepro.com/products/physicians-elemental... but it's super expensive, tastes terrible, and studies don't show that it has better results than polymeric formula.

Ultimately ideally you only go through the bad phase once. If you can get into remission earlier you have a better chance of durable deep remission where your gut is totally repaired and your chance of the negative flywheel of wound -> bacteria leaking into bloodstream -> tnf inflammation -> bigger wound is minimal.

> Ensure Plus chocolate with no added fiber

This is entirely unimportant, but I always really liked the taste of that one.

My dad was diagnosed with CD around 20 years ago. Besides going through the usual cortisone treatments to control his flares and monoclonal antibodies starting with Remicade, then a couple of other ones that were less effective and now Humira, he has discovered that eating a cup of boiled Durvillaea kelp every day helps with his symptoms: https://en.wikipedia.org/wiki/Durvillaea_antarctica. It seems to have some nutrients similar to mucilagen that acts like a buffer in his case.

just curious what your triggers are...

for me, it is grapes (but not things like blueberries), caffeine and cashews

I suspect w/ the grapes, there's maybe some microbes or fungi on the skins

Caffeine? How did you isolate this cause? Do you think Nespresso’s alu capsules are involved? Since I drink Nespresso I have strange bowel movements, extreme tiredness and getting fat.

coffee, tea, coke, diet coke, energy drinks all set me off.

decaf coffee and tea do not. So I am assuming caffeine is the problem. Caffeine does increase intestinal motility. Of course it could be something in those drinks, but I'm fairly certain it is the caffeine.

Most (all?) so-called "decaffinated" coffee has a decent amount of caffeine.

maybe like 1/10th or less. not enough to trigger me

Grains are a big one for me. Red/fatty meat also seems to be one as well. I will say it’s been difficult to pinpoint exact triggers and far easier to pinpoint things that don’t trigger me though.

I know rice/chicken are two things that I tolerate well. Dairy seems to be fairly well tolerated too. Bland crackers like saltines and even Nilla wafers are usually fine as well.

Oddly, one thing that really triggers me is things that are fruit snacks/similar items. Not sure if it is gelatin or what, but something in them sets me off.

Could be pectin. or salicylates. or lots of things. How do you do with aspirin? Can you eat jam?

I think jams are fine, but can’t recall having tried them since being diagnosed. Diet has been fairly limited and am pretty hesitant to try new things. Might be worth trying them out to see how it’s tolerated though!

For me things that are MCAS triggers tend to be problematic. Also grains, animal fats, old cheese and egg whites

High angle of attack at low airspeed while pulling G does tend to be problematic.

Grapes are treated with copper

The worst "attack" I've ever had was with spaghetti squash. I got the usual: bloating and diarrhea but on a scale I had never experienced before. I felt extremely tired void of any appetite for a couple days after. Really wonder what in it did it for me. Maybe it was a coincidence, or an allergy. Haven't figured it out to this day. Other than that, any enriched flour pretty consistently gives me light bloating.

Fecal transplants also have put people in remission.

This isn’t a panacea unfortunately, this caused a woman with an infection to eliminate it, but caused her to become obese. https://www.iflscience.com/health-and-medicine/woman-becomes...

> At the time, the woman was a healthy 136 pounds with a normal BMI of 26. Her daughter weighed 140 pounds at the time, with a BMI of 26.6, but became overweight shortly afterward. Following the therapy, the woman’s symptoms vanished and she no longer experienced recurrent infections.

>Sixteen months later, however, the woman reported unintentional weight gain of 34 pounds and met the criteria for obesity. Two and a half years after the transplant, the woman weighed 177 pounds with a BMI of 34.5, despite a medically supervised liquid protein diet and exercise program.

I would bet money that the donor was obese.

Ah, yes indeed, you failed to include the headline from the article: "Woman Becomes Obese After Fecal Transplant From Overweight Donor"

Did you read my post?

That anecdote would not cause me to think less of fecal transplants, but quite the opposite. If there is a causative lever in the microbiome that can affect obesity, one could apply that in reverse, so that if you had the right source, the donor from that story could reduce their weight by receiving a transplant themselves.

I think it’s useful to be selective, you have to have similar biomes, you can’t just use anyone’s feces, it’s why her daughter’s was used. I said it’s not a panacea but it is a good area to research.

The paper mentions that we are now regularly exposed to bacteria that can grow in cold environments. That's fascinating

I love drinking ice water, but I stopped after I found that even when using RO-filtered water in a separate ice cube tray, I was getting getting off tastes in the ice from something that was evidently living in the fridge/freezer.

I don't know if its spores or just odors or what, but I can't seem to get it out of the fridge; I'm pretty sure it's growing on or near the evaporator coils, in an area I can't access.

I'm putting a dedicated ice machine in my house due to how gross the ice is in a "normal" fridge/freezer.

In a dedicated ice machine, the ice is constantly melting down the drain and being replaced by fresh ice, so it shouldn't get funky like normal ice is. Yes, it's a little wasteful, but our water comes from a surface lake and our sewer drains to a river downstream of the same lake so I can live with it.

I hate old ice cubes which have partly evaporated and apparently absorbed odours from meat and other stuff. Will you find newer ice cubes less gross?

Or maybe since people has refrigerator, they eat a ton of stuff wrapped in plastics for weeks

Anecdotally Kefir seems to work surprisingly well. A variety of people have reported it solving IBS and it is definitely improving mine and has widened the foods I can eat. I recommend Kefir quite highly, it does seems to work and I noticed the positive effect within a week.

I use the grains in full fat milk, getting raw milk is ideal but isn't easy and don't usually bother. The process works fine in pasteurized milk anyway. I was also lactose intolerant before I took the Kefir and it didn't upset it thankfully, it actually cured it.

The main thing to really be aware of is to start slowly with a few tablespoons rather than gulping down all 250ml of your first few batches, it can be quite intense on the system until you adapt to it.

I'd add that it helps to also drop other processed foods. Avoid sugar, chocolate, soda, sugar free drinks. Use spices sparingly.

Eat home cooked meals, use large variety of vegetables and large portion of vegetables with meals. Add garlic to home cooked meals. Once feeling able, eat fruit regularly.

Improvements may take months to be noticeable. Once healed, bowel movement normalizes.

Solved my own gut issues that way. They'll flair if I go back to processed foods for any length of time.

Exercise is also a key component to keep inflammation at bay. Take up running or biking.

Avoid sugar free drinks?

> Use spices sparingly.

> Add garlic to home cooked meals.

Those two things aren’t compatible.

Is there any science behind these declarations or is it mainly a rehash of what you happened to do when your issues went away?

Garlic is not a spice. It is an allium, in the same family as onions and leeks.

Not sure what definition of spice you're using, but Wikipedia calls it "a plant substance primarily used for flavoring food", which garlic definitely is.

I would define a spice as a non-nutritive plant substance used for flavoring and not consumed as an independent entity. Garlic is not non-nutritive, and it is consumed by many people as a whole food. Whole roasted heads of garlic are awesome.

Chilli peppers are also consumed as independent entities, but chilli powder is definitely a spice. Similarly ginger.

Why does it need to be non-nutritive? That would rule out things like ginger, many chili peppers, some plant greens like basil, even sesame seeds. I would consider all of the above spices, as well as garlic.

I would consider all of those to be vegetables, herbs, or other types of consumables, not spices. I would consider dried and ground chili peppers a spice, and fresh whole ones to be a vegetable.

That seems reasonable. But then to bring it back around full circle- would garlic then indeed be a spice, when used as an individual clove finely chopped in a larger dish for flavoring purposes (or garlic powder), by the same logic you're applying to peppers?

Not a big deal though. It sounds like you apply stricter categorical food definitions than I do, and that's fine. It's hard to draw exact lines.

My apologies - fresh ingredients like those would be fine in my case. I was unclear and meant processed spices in powdered form which seem to act as some kind of gut irritant (for me)

I guarantee you just about every spice eaten at the same bulk as a head of garlic would be 'nutritive.' Especially fresh.

Drinks sweetened with Stevia may be ok. I guess each person has to experiment. I've read that artificial sweeteners alter the gut flora in a bad way.

Spices - I meant dried form powdered spices. Yes n=1. I found this out when I read of cinnamon benzoate free diet used to treat other conditions.

I went from drinking a lot of coke / soda / fruit juice drinks to the natural progression of cutting back on sugar. I kept drinking sugar free versions of various drinks for a long time. I then cut them completely as they had a negative effect for me. If you drink one, it's not obvious and may not be an issue. Drinking those things every day... maybe some people are ok but eventually my body rejected that.

Water, tea, coffee are ok in my experience..

I am not claiming a cure, I added suggestions to include with the parent posters advice that I found helpful. As always work with your doctor and follow their advice.

> Drinks sweetened with Stevia may be ok. I guess each person has to experiment. I've read that artificial sweeteners alter the gut flora in a bad way.

I think the query around "sugar-free drinks" was that this phrase would normally include drinks like water that have no sugar or artificial sweeteners rather than just artificially sweetened drinks.

Warning - garlic and onions can be terrible for those with IBS triggered by FODMAPs.

That's true. I know someone who can eat fresh garlic but can't eat onions (explosive D). I don't know why - I suspect each person has different gut bacteria that can cause or trigger these problems.

This is about as confusing as it can get. Avoid sugars but also eat fruit regularly? Don't use spices but also add garlic?

It's not confusing. Refined sugar by itself or in processed foods is not healthy. Fruit has fiber and nutrients that are helpful for the body.

I listed things that helped me. Fresh garlic (I should have been specific) on a regular basis has been good in my case. Spices (specifically dried powder form - sorry this wasn't clear), in my case, they tend to be a gut irritant.

refined sugar is almost the exact same stuff that is in most fruits, just the balance between glucose and fructose is slight different. It makes no sense to recommend fruits while advising to not eat anything with refined sugars in it.

A variety of people have reported it solving IBS

I had IBS from about age 10 to 27. I thought it was completely normal to have "stomach troubles" 3+ days per week for that period of 17 years.

What fixed it for me was drinking a ton of water and eating 35-40 grams of dietary fiber per day. I went from 3+ stomach trouble incidents per week to literally about 1 per year. Other than the dietary fiber, I eat whatever I want including extremely spicy food on an almost daily basis.

YMMV. My diet to manage IBS has minimal amounts of fiber. The focus on fiber of the past few decades has been mostly sales driven (i.e. breakfast cereals), the research is quite lacking. As usual in dietetics, no size fits all.

Most breakfast cereals have what I would consider low fiber - like 3g. Milk with lactose also isn’t a great choice for a lot of people.

I’ve never heard of a low fiber diet for IBS. In fact the first dietary suggestion on the non-profit IFFGD’s website is to increase fiber intake:

https://aboutibs.org/treatment/ibs-diet/dietary-fiber/

I have heard of people having problems with fiber if they rapidly increase intake or if they don’t drink enough water. I target 1.5 to 2 gallons of water per day.

As you said, everyone is different but you’re just the first one I’ve heard aided by a low fiber diet.

Metamucil can draw water into the lower intestine, which is terrible for some forms of IBS-D. Fibre is worth a try but it's not a magic bullet and can actually cause flares in some people.

As others in the thread have mentioned, the carnivore diet seems to work as well: https://crohnscarnivore.blogspot.com/

Indeed carnivore has 0 grams of fiber, and solves any digestive issues for me, as well as feeling incredible.

2 gallons of water? Is that like 8 litres? That's an enormous amount of water. I have to force myself to drink 2 litres a day

You've never heard of a low fiber diet, I've never heard anybody recommend that amount of water. Again, no size fits all.

I struggle to drink 2 litres. I got frustrated and got an app which will remind me and keep track of how much I am drinking and turns out I am drinking on average 1L. Any techniques you follow ?

My technique is very simple. I bought a water filter jug which I can fill and bring to my desk (I work an office job). Turns out that simply having the water available within reach rather than having to get up to refill my glass helps a lot (and the improved taste of the filtered water doesn't hurt - but this may not be necessary depending on the quality of the tap water where you live).

Going grab one gym bottles over the weekend. Thanks

If your IBS resolves itself by just adding more fiber, it probably was not IBS

I make my own kefir and part of my process is to let it “finish” fermenting in the refrigerator. It definitely tastes different after a few days in the cold, and I never really thought about how maybe there were different bacteria/yeast contributing to this compared to the first ~24 hrs on the counter. To the extent kefir helps, I now wonder how the temperature of fermentation affects people with CD?

It's not whether temperature of fermentation affects people, it's how much it affects microbes. Every fermentation process is dependent upon microbes (bacteria, yeast) acting on a food source at a specific temperature range. Different microbes act at different temperatures leading to different byproducts. For example, with brewing and vinting, cold temperatures can inhibit the "good" microbes and instead accelerate the growth of "bad" microbes, and too much temperature can generate undesireable byproducts. It's often necessary to use methods to control temperature in order to get the desired reactions and inhibit the undesired ones. Otherwise you could get sick from drinking improperly brewed beer.

I mean I assume the temperature of fermentation would affect people via the microbes. Perhaps I’m not following what distinction you’re making?

Also my understanding is that lagers are cold-fermented. Are you suggesting that’s somehow a “riskier” beer?

What I mean is that saying "the temperature of fermentation affecting crohn's" misses all the other details (what microbes are you trying to grow, what byproducts you want, how much, what fuel, for how long). Maybe you had a specific set of variables in mind already, but it didn't seem clear to me, so speculating just on temperature seemed to be lacking critical details.

Cold fermenting uses a different yeast that reacts at a different temperature and acts on a different fuel at a different rate and is safe when done properly. Of course with all brewing you try very hard to sterilize and keep any bad bacteria out of your batch. Having the right yeast at the right temperature with the right fuel at the right time and for the right duration is all critical to get the result you want. Change any variable and you can get a drastically different result (and thus a different affect on crohn's)

> Maybe you had a specific set of variables in mind already, but it didn't seem clear to me, so speculating just on temperature seemed to be lacking critical details.

The low temperature/microbes/Crohn's connection came from the OP. Someone else connected kefir benefiting Crohn's. I was only drawing attention to my own experience with a temperature effect in kefir and speculating that there might be a further connection.

Did you also use homemade kefir?

Yes, you can buy it but its half the price to do it yourself a lot better bacteria wise. You need some starter grains and 250-300ml of while milk every day, a container and filter. I bought a KEFIRKO as well which seems to do a good job as a container and filter and makes the process easy. Takes about 3 minutes a day to prepare the drink and set it up for the next day.

You mentioned that it cured your lactose intolerance. So are you now able to drink any amount of milk without side effects? I have extreme lactose intolerance, so I will give it a try if that is the case.

Also, do you have any links to the sources that you used for preparing/procuring Kefir?

I haven't tried any amount but I can now happily have 300ml and eat foods containing milk and lactose in normal quantities. According my genetics I should be mildly lactose intolerant (2 of the 5 genes IIRC) so I am fairly average in that regard but the intolerance with cramps and pain was more recent.

I bought a KEFIRKO and Kombuchaorganic grains and the kefirko came with the instructions on the process but you can also get guidance on /r/kefir. Its just 250ml of milk + grains for 24 hours (initially probably 36 hours until it thickens) and filter it and clean and do it again.

It is a good substitute for milk if you are lactose intolerant, but only if you have minor form. I doubt it helps if you have a severe form because it still contains lactose (less because fermentation) and it will certainly not cure it.

But aside from the potential benefits for digestion, which many people do indeed report, it is also quite tasty.

I think Kefir is basically just other microbes for yogurt where a special fungi is added (a form of yeast).

The yeast: https://lh3.googleusercontent.com/proxy/Sb5d1MJH-znhox3iz_SI...

Looks like a milk brain...

Does it help your IBS or your Crohn's?

IBS. Getting assessed for Crohn's isn't really possible in the NHS at the moment since its collapsed for most non emergency care ever since Covid hit, I have been unable to get any specialist appointments to assess it properly. Now I don't have to.

Ah fair enough. My younger brother has quite severe Crohn's that he keeps in check with some pretty hectic drugs, and sadly had very little benefit from various diets and other changes. The rest of my family has IBS though, so this is good info for some of them to try

> microbes (yeast, bacteria, fungi) all seem to play a key role.

The microbiome is probably a key factor in nearly every inflammatory digestive issue.

Lots of lay persons consider the microbiome outright faux science. More and more I think homeopathic doctors take it into consideration, but for traditional practitioners it easy to overlook because the people that test for known bad bacteria are also doing so many things wrong with diet that they suffer from chronic diseases, chronic inflammation and metabolic diseases which will take precedence over the microbiome.

There are tons of studies in the past couple decades on the microbiome but it’s still a very new area of science and study. The collective of bacteria, viruses, and fungi we host are literally turning on and off our genes. I look forward to future developments on the microbiome, neurons in the gut and gut-brain connections.

Any chance you know why store kefir doesn't do as well?

I would advise having a look at: https://www.youtube.com/watch?app=desktop&v=O53D9x_SO4Q for some up-to-date info.

There are a surprisingly large number of changes since ~1900 that have had big environmental effects on "modern life" that we are barely getting to grips with - this cold chain one is new to me but it fits in with electric lighting, urban noise and air pollution and even mass literacy etc as massive changes we can barely get to grips with

I am deffo not arguing for some return to some paeleo, noble savage ideal. But our poor bodies evolved for something very different to eating burgers on a plane under flourescent lighting whilst reading text on a screen.

Whatever we build as societies in the next 100'years, we should build at human scale.

Our bodys evolved to survive under harsh conditions until our offsprings are old enough to carry on (30 - 40 years) everything on top is bonus.

Evolution and Biology have no agency. There is no moral, no right kind of living. If you procreate you fulfilled your biological "destiny". You can do that under eating a burger on a plane while reading on a screen. Evolution doesn't mind. Our bodys don't mind. Warrenty runs out in your thirties. Good thing we have brains that allow us to prolong our life's and increase our well-being.

I don’t think the GP was arguing that “evolution cares”. Rather, I think they were saying that we evolved as part of a system that moved at a certain speed. Changes to that system were reflected as part of the evolutionary feedback mechanism. Now, however, we’re changing the system so fast, evolution has no hope of keeping up.

Our brains were evolved.

Well, clearly something goes wrong as children also get these debilitating diseases.

The decrease in life expectancy of Crohn's is -6 to -8 years compared to average, and in the Western world that's your 70s to 80s, so your fact doesn't necessarily conflict with their conclusion.

> until our offsprings are old enough to carry on (30 - 40 years)

I see this all the time. If you saw how pre-modern (extended) families actually function, you'd know that the survival of younger offspring is strongly influenced by what the 40+ year old members of the family are or aren't able to do.

There is so much wrong with all these statements but I’ll start with this one.

https://en.wikipedia.org/wiki/Grandmother_hypothesis

Our bodies include our brains - the same ones that evolved for us to be social, develop language and then the technology and logistics to develop modern food production. This is all part of evolution.

Yes but also so many people from 1920 are living to 100 years old

Suggesting that so much of our health enlightenment is not useful compared to just better treatment

Curious to see how it plays out

With lab grown meat, you could go back to eating raw meat. Some folded proteins can cause problems when they get into cells, cooking folds proteins.

The raw diet with dogs (huskies - siberian and malamute) has seen about 20% improvement in performance reportedly by their owners when discussing it with them.

I don't know why you'd want to go back to eating raw meat. The "our bodies didn't evolve for this" argument doesn't apply to cooked meat; human ancestors began cooking meat (among other things) between one to two million years ago.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5551512/ "We must not forget that immune or sensitive reactions to food can also depend on whether the food is raw or cooked. A food in its natural state can be vastly different from the same food that has been cooked, processed, or modified. The food can react with sugar, lipids can be oxidized, peptide chains can be broken, and neoantigens can be formed. Thus, an individual that can eat a raw food safely may be highly reactive to the same food if cooked, or vice versa."

Our immune system attacks some of the food we eat. Enzymes in raw food are destroyed at 47degC. Enzymes can be good for us, everyone should be familiar with saliva.

Changes over the years have also occurred with the food we eat today compared to just 20 years ago. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410904/ "As shown in Figure 3, energy and sodium intakes have increased significantly since the 1970s but have remained rather constant since the 1980s to 1990s. In contrast, saturated fat, either as grams per day or as a percentage of calories declined significantly from the late 1970s through the 2000s. Whereas calcium increased significantly since the 1970s, potassium intake was more variable, with intakes increasing in the 1980s and then declining somewhat in the 2000s. The intake of added sugars (for which information was available for only the 2000s because of database limitations) declined somewhat in the past few years compared with earlier years."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8619086/ "3. Relationship between Food Processing, Nutritional Value, and Health Effects The food manufacturing industry—as a whole—is driven primarily by the motive to increase profits, which requires minimizing costs across all stages of production; this is true regardless of whether it produces highly processed potato chips (a UPF) or extra virgin olive oil (a minimally processed food). In some cases, this may be achieved by the use of cheaper alternative food ingredients whenever possible and to the extent possible and, on some occasions, this practice can result in UPFs with unfavorable health effects. An example is the partial hydrogenation of vegetable oils (which are liquid at room temperature) to convert unsaturated fatty acids to saturated fatty acids and make these oils more solid or “spreadable”."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3003575/ It sounds bad, but this is the price of mass produced food, if however you have your own country estate perhaps in the highlands of Scotland or a farm elsewhere you can eat fresh and raw quite safely.

They used to prescribe raw liver in the 1800's for pernicious anaemia which is today treated with a B12 injection. Raw liver is better than Bolivian marching powder or Red Bull for giving you wiings! Maybe you have tried it? ;-)

I am glad this topic came up.

My son was diagnosed for Crohn's disease last year. He was 11 years at that time. His CalProtectin was 1040 at that time which very high compared to the safe value of 60. We gave him gluten free diet and it came down to 300 in 3 months but shot back to 700 few months later. Not sure what caused it go up.

I am desperately seeking help in curing him of Crohn's.

We are from India settled in USA. Does anyone have any good resources on this topic.

The doctor said that first generation immigrants don't get this disease but they have noticed that the their kids do get it.

> I am desperately seeking help in curing him of Crohn's.

There's no known cure for Crohn's disease, only treatment to reduce symptoms. If you are really lucky it might go into long-term remission, but theres no 'cure' yet.

As someone who's been dealing with severe chronic symptoms of Chron's my whole life.... I wish there was.

unclekev is correct. I was diagnosed when I was ~12, over 40 years ago, and still have it.

But despite the fact that there's no cure, there is a lot you can do to control it:

* There are a lot more, better treatments today than back when I was a kid. Your GI doctor should be able to help with this.

* I believe that the largest aggravator is stress. Your boy really needs to learn to handle stress. In my case, I was rather a perfectionist, and had to learn to just let go of things that I couldn't directly fix myself. And of course the disease itself is a prime stressor, so he's got to come to terms with it.

* Different foods can be triggers for different people, due to individual differences plus the areas of the GI tract that are implicated. You need to experiment (keep a journal!) to figure out what these are. Don't fall for someone trying to sell a silver bullet like gluten-free. That may, indeed, help some people, but it won't others.

Can I ask what it’s like after remission and being in your fifties with CD? Practically is CD remission what most would consider normal or do symptoms present?

Honestly, in the big lottery of life, I think I'm still a winner on net.

At least for my case, with minor concessions to diet, and with having health insurance that'll pay for my (expensive) treatments, my symptoms are pretty minor. I think I could count on one hand the number of times this year I've had any serious discomfort that seemed connected to the disease.

The one thing that bothers me is the persistent problem of poorly-formed bowel movements, and occasional diarrhea. You never really know when this is going to pop up. For short-term things like a night out you can plan ahead, maybe take an immodium beforehand. But there are things I'd like to do that this interferes with, at least to the point of being an embarrassing inconvenience. For example, I'd love to take a rafting trip through the Grand Canyon, but it seems like managing the issue would be complicated in a situation where the best facilities you've got are a bucket in a tent set up by the guides (and even that is only when it's been set up!), so it's a bucket list thing I'll likely never get to.

Agree with the stress aggravator.

I've had two severe Crohns flare ups (one required a bowel resection), both of those flare ups can be contributed to major stress incidents (first one divorce, and second one the death of my mother)

Otherwise I only have mild symptoms that are only annoying more than painful

A friend I know used a good Ayurveda doctor in India, he basically has to eat a very bland diet and all his symptoms went away. In western medicine they said there was nothing they could do.

Edit: it eliminated his severe allergies and alleviated the symptoms of Crohn’s, so it seemed like there was more problems besides Crohns.

Is that actually a cure though, or just avoiding the triggers that produce the symptoms?

Just avoiding triggers, there is no cure.

He had other issues as well, like permanent allergies.

Elimination diets are pretty commonly prescribed where I am in the US.

Basically, eliminate everything that is not absolutely necessary, and then slowly add back things to see if they mess you up, and then you can at least isolate problem foods.

As I said elsewhere, figuring out the diet that works for you is important. But this is a personal thing. Every patient has different details, due to the quirks of their own digestion as well as to the areas that the disease is affecting.

I have a mild case of Crohn's. My doctor has put me on Humira and it is a miracle drug. Ever since starting the medicine I have been in remission (5+ years).

I find staying active and eating healthy diets also really helps.

Humira covers a lot of ground in auto-immune disease. toastyCheese is not exagerating to call it a miracle drug, but it is not the only miracle drug. There are other anti-CD20 monoclonal antibodies, such as Rituxan, so don't get overly fixated on just one brand name.

This space is moving extremely quickly, and there are a bunch of other targets with drugs currently on the market or under investigation and showing results. I have to say the progress in recent years has been extremely exciting.

Biochemist with CD here (taking adalimumab + 6-mercaptopurine), this is the best advice.

There's no curing it, the best you can do is take the treatment and be as healthy and active as you can generally! Kudos.

I was diagnosed similarly at 46, but celiac, not Chron's.

I spent a 26 years battling the strangest health issues only to find out that I'm allergic to wheat. My body didn't produce the classic symptoms of celiac, which is my disease, until it did: Duhring disease, or sores that form in response to gluten reactivity.

The gluten-free lifestyle is a shock for someone who loves bread and pasta as much as I do, but I feel a thousand percent better.

Inexplicable weight gain my entire adult life disappeared seemingly overnight, as if my body couldn't wait to get rid of it. I went from 235 to 170 without even trying.

Doctors tried over and again to diagnose me with bipolar disorder since I was 21, and I kept telling them they were full of s**. The symptoms of depression and mania have completely disappeared. I haven't had to take an antidepressant or antipsychotic in over a year. I was taking both every day.

Worse was hives. I had this untreatable disorder known as cholinergic urticaria, essentially allergic to my own sweat, and now that's gone as well. This urticaria disease is so debilitating I wouldn't wish it on the worst of people.

I still feel like an idiot.

I always knew it was related to yeast. I told doctor after doctor, but they kept thinking it was some sort of fungal infection. I knew yeast was causal somehow. I never thought it would be so simple: wheat is my personal poison.

A diet without gluten has given me a new lease on life, so now I have to confront the world with complete health, and that is truly difficult.

I lived my entire adult life alone because I was poisoning myself with gluten.

And make no mistake, I was absolutely one of those people poo pooing gluten-free this, gluten-free that as just another ridiculous fad diet.

Was I ever wrong!

A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things. It's based on relatively outdated science, but it still seems to work for many people. (It was created when there was a very limited understanding of the microbiome.) There's an active Facebook Group full of people who follow the diet[0].

Seattle Children's Hospital [1] uses the diet as one of the primary treatment modalities.

Even if you don't choose to follow that diet, the primary goals should be to eliminate any inflammation, and also find foods that are safe to eat. Most people who do well, in terms of outcomes, learn to be very careful with what they eat. No matter what, it's a long term learning process. Eventually, you want to eat as diverse a diet as possible, while still avoiding any foods that are potential triggers for inflammation.

Unfortunately, most gastroenterologists are not knowledgeable about diet, and are not helpful, in terms of dietary treatments. I would recommend finding a doctor who is supportive of both dietary and drug-based treatments, as opposed to a doctor who has the blinders on, and sees drug treatments as the only option.

[0] https://www.facebook.com/groups/SCDers/

[1] https://www.seattlechildrens.org/conditions/crohns-disease/

Define success. There is good reason that most gastro doctors don't suggest diets as a solution and instead say things like "avoid anything that bothers you." It is because there is no evidence that a particular diet helps with inflammation.

You might be able to avoid symptoms of pain with a particular diet, but that is only a very minor benefit. If you aren't preventing the inflammation you are still going to suffer all the worst effects of the disease. If these kids aren't getting routine colonoscopies / MRIs (like one every two years or more) to try and detect if there is any inflammation, then they have no idea if the diet is actually working for them or not.

If you go to any Crohn's discussion group where it's the actual _people_ with Crohn's talking and not their parents, they will say things like: "Every asshole thinks they have 'thee diet' that will work, when they don't." See for example /r/CrohnsDisease.

> while still avoiding any foods that are potential triggers for inflammation

There is no evidence that specific foods are triggers of inflammation, only triggers of _symptoms_. The best guess we have is a particular type of bacteria + bad genes is the real cause of inflammation, but that bacteria exists everywhere (including drinking water).

This is exactly the reasoning that my gastroenterologist used. There's no placebo controlled, double blind studies that support "diet" as a treatment for Crohn's disease.

Well, you know what: The same is true for open heart surgeries. (One of the most incredibly invasive procedures possible.)

Actually, there are studies that support diet as an effective means of treatment.

No, there aren't enough of the "right" studies that are as "high quality" as the ones supporting the efficacy of various drugs. However, "evidence" doesn't change reality, instead, it simply reflects it.

You asked about success: For me, success means no active inflammation, at all. Which was achieved through a combination of drugs and diet.

For others, success means no longer going to the bathroom twenty times a day. Having "regular" bowel movements. No obvious symptoms.

Your comment brushed off "symptoms" as something unimportant. But, for people who are really debilitated by the disease, a change in diet that eliminates the symptoms is life changing. No need for "evidence" on that.

You're right that there's no "one" diet that works for everyone, as I mentioned in my original comment. It's a learning process. However, it's also my observation that everyone with Crohn's disease gets very aware, and very specific about what they eat. (Or, they eventually face the consequences.)

Also if it works it works. I think people worry too much about a solution being a placebo.

Yes, it may be that your solution only worked because you believed it would work. But take the win!

Certainly solutions backed by double blind controlled studied are way better. But those often aren't an option, so use what is.

This is only true insofar as the "solution" doesn't cause other problems itself.

People bankrupting themselves on snake oil, or having other health issues due to weird diets, or avoiding actually proven medicine are all extremely harmful.

For a disease with highly temporally variable symptoms, you don’t even need a placebo effect. You could try some treatment and randomly get better. (Go read about almost any Crohn’s RCT for which the participants had active flares. The control group generally improves a decent amount over the course of the study.)

I'm not sure I follow the point on open heart surgeries. What would the study be? Is there some question of fact that needs to be resolved? There are many kinds of open heart surgery too. Which one do you purport does not have any randomized trials associated with it? All of them? That would actually surprise me a little.

Placebo-controlled RCTs are only feasible when it's possible to ethically apply the placebo or the treatment. Generally speaking, the types of things we do open heart surgery for, like valve replacement, coronary bypass, or pacemakers, it is impossible to ethically apply a placebo.

You only need RCTs when there is some question of fact that needs to be resolved. There is no need for a random controlled trial about whether stopping all water intake will kill someone. For some types of heart surgery, this doubt does exist, but for any of those types which are not being studied with RCTs, I would guess there is not much doubt. If your heart valve is busted and it is causing you to be unable to pump blood, you can look at the pumping efficiency before and after replacement. No RCT needed.

You'll note that these two factors are very different from diet. It is possible to ethically apply a control and a treatment where it comes to diet, and there is much doubt as to their efficiency for some purposes.

I agree w/ you, but I'll also add that the premise that the evidence on diet is equivocal is pretty offbase. The evidence for EEN is pretty robust and held up over a couple dozen studies - see my other comment https://news.ycombinator.com/item?id=29453808#29456208

>A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things

Starch is the only sugar the immune system doesn't attack.

I have severe crohn's. Humira worked great for me for several years with no side effects that I was aware of. I was leery of biologics for several years, but I now regret not going on them sooner.

I'm a biochemist with 12 years of postsecondary education in life sciences, and I have Crohn's Disease.

There is no cure for CD, you must do your best to accept that.

Furthermore, despite what you may have read in this article, elsewhere on the internet and in countless anecdotes (such as on this hacker news page in the comments), it is highly unlikely that changing your diet will affect the disease. At most, changing the diet will cause or reduce some discomfort (imagine gas bloating up ulcerated tissue, or capsaicin from hot pepper touching an ulcer: the gas and the capsaicin doesn't cause the ulcer, and doesn't make it any worse, but it makes it hurt), but no diet change will stop the disease.

The best thing you can do for your son is to keep regular follow-ups with a gastroenterologist and follow the suggested course of treatment. That will probably mean taking biologics such as anti-TNF medication or other antibodies, but there are a variety of ways to approach treatment and it depends on the patient.

I have Crohn’s as well and agree with the sentiment in this post. Mine mostly affects me due to strictures and the diet part most definitely appears to be correlated with foods producing greater amounts of gas/discomfort. Only two things that have worked for me are prednisone and Inflectra. For others, Budesonide or other biologics work for them. For the unfortunate, surgery is one of their only options and many times is temporary. Crohn’s definitely sucks and I would do you best to find a good GI and be extremely persistent. It took me over a year to find something that works and a lot of really tough days/nights/weeks/months in between.

As a parent myself, I can’t imagine how helpless you must feel watching your own child struggle with it. Wishing you guys the best of luck and thoughts are with you!

I'm sending you good vibes and wishing you luck!

Somewhat paradoxically... I'm curious if you've tried to modify your diet by including extremely spicy foods on a daily basis?

Most people approach diet modification as a way to maximize comfort and minimize pain, but my strategy is to use capsaicin as a 100% safe and pure-pain mechanism to sound the alarm when I develop an ulcer. It's not always immediately obvious when you develop an ulcer, depending where in your GI tract it is... And this is where knowledge is power: if you can somehow know that you're going to flare up before you actually flare up, then my argument is that you have a better chance at damage-control. Similarly, if you are more pain-sensitive to ulcers you would be getting either way, then you might be aware of more episodes of inflammation than you might otherwise be. With my super hot pepper diet, knowing that it's purely pain and no damage makes the pain itself a lot less stressful, and I have very occasionally used this signal to take a single 2.5mg dose of prednisone (I've been on the same no-refill bottle since 2013, so this doesn't happen often). Since 2013, I've never had to take more than one dose at a time, and judging by how many pills I have left, I've probably only done it 20-30 times or so (I should really keep a journal).

(Disclaimer: I wouldn't put a lot of faith in this tip, and I'd strongly caution against taking corticosteroids for more than a few days, and to talk about this with your doctor before trying it.)

Funny enough, I’ve almost never eaten spicy foods. Interesting way of finding where/if you have an ulcer!

Mine is in my terminal ileum and I can definitely feel when things are…tighter, for lack of a better description.

Definitely agree with recommending staying away from corticosteroids if you can avoid it. I was on them for a year and the side effects on them were not too horrible, but getting off was a whole other story! I am glad they were there though, as it was only thing keeping me from surgery/the hospital until I found a biologic that worked.

I don't think Budesonide is a biologic, is it? As far as I'm aware it's an expensive steroid that often has many fewer side-effects.

You're correct, budesonide is not a biologic, it is a corticosteroid. "Biologic" was most likely in reference to inflectra / infliximab.

Ah yes, poorly worded sentence. Inflectra was the biologic, whereas budesonide would be an alternative to a systemic corticosteroid such as prednisone.

> There is no cure for CD, you must do your best to accept that.

Maybe, maybe not. This Crohn's vaccine looks promising. The vaccine is preventative and curative so it can treat patients who already have Crohn's:

https://crohnsmapvaccine.com/

https://crohnsmapvaccine.com/faq/

They've started safety trials in Crohn's patients. Hopefully it all works out and the vaccine proves to be effective.

I think vaccines are an interesting therapeutic approach for IBD, but personally I don't feel very optimistic that we'll make it work in the near-term. The website you link to gives an excessively misleading / false impression that MAP is the cause of CD.

There have been a number of whole microbiome sequencing studies comparing IBD/CD patients and healthy controls, and to the best of my knowledge, though there are demonstrable differences, no studies have established or even really "strongly suggested" a causative link with a specific microbe or even with a class of microbes. There are many other candidates that have been found to be associated with IBD, but none of them seem to be to blame on their own. If MAP was the cause of CD, we would easily know it from these studies.

If we knew that MAP was the key, then treatment and prevention would become quite a lot simpler. We simply don't know that, and I'd go so far as to say that this will never work beyond a small subset of patients. IBD (both UC and CD) have a notoriously multifactorial aetiology.

The idea that diet doesn't affect the disease is incorrect. We've known for a while (40 years now?) that exclusive enteral nutrition has an effect size on Crohn's (seems to be pretty strong) and it's even similar to prednisone in treating flares particularly in children.

https://www.cochrane.org/CD000542/IBD_enteral-nutritional-th...

A couple years ago a trial looked at replicating EEN with solid foods with promising results https://pubmed.ncbi.nlm.nih.gov/30550821/

EEN is a first line therapy in adolescents but rarely mentioned to adults (and in North America less commonly mentioned to adolescents). I was treated at Kaiser and UCSF and nobody ever mentioned it to me. From the Cochrane article: "Whereas 62% of western European gastroenterologists use this therapy routinely for the management of pediatric patients with Crohn’s disease, only 4% of American gastroenterologists regularly use enteral nutrition in their practice (Levine 2003)"

As a Crohn's patient I found it worked well layered on top of a biologic to get into quite deep remission.

Aside from EEN, once you are in remission bowel habits are clearly manipulated by diets - being regular is caused by diet/hydration. I have pretty much perfect consistency right now and it's pretty easy for me to change that if I switch up my routine.

"Diet doesn't affect the underlying pathology" in Crohn's Disease is definitely a simplification, but I believe it's a healthy and important one, as the harm caused by an elimination diet (or the cost of any given special diet) can easily outweigh its benefits. It's not in the human nature to accept that certain things are outside of our control, and IBD is definitely a case where people tend to delude themselves into thinking that some dietary intervention worked when it did not.

In principle, we understand that an important part of the aetiology of CD has to do with interactions of the gut microbiome with a dysregulated immune system and a perturbation of the intestinal barrier. We know that the gut microbiome is somewhat plastic to dietary changes, though research findings regularly frustrate attempts at intentional modification.

It would be more correct to say that there is no dietary change which is known to causally and intentionally alter the course of the underlying disease.

That is not the same as saying that no relationships or correlations have ever been observed, or that dietary changes do not provide some symptomatic relief: on the contrary, we know that people who have a certain diet have a lower prevalence, or better subjective or even objective outcomes. Unfortunately, most attempts at taking patients from the worse group and changing their diet to match that of the better-off group fall flat on their face. This is a few years old and is not specific to CD, but it is a great example of the type of results we see over and over again in dietary intervention studies of this nature: https://www.cell.com/fulltext/S0092-8674(15)01111-3

Obviously this is an area of research of great interest, and if we could figure out a way to improve outcomes by making specific and robust dietary change recommendations, we would. It really is not that simple, unfortunately.

I don't dispute the results of the studies you link, and I find the Cochrane meta analysis particularly notable, but I would caution that interpreting the results doesn't seem to me to be as straightforward as it might seem.

I wonder whether controls are adequate (there is no placebo group here, for ethical reasons), I wonder whether the results can speak of longer-term outcomes, whether there is a selection bias (would you do this study with patients who have severe or advanced disease, or mostly with people who have milder clinical presentations?), whether the results might indicate to some degree the natural progression of largely self-limiting flareups, whether it's appropriate to compare induction of remission using corticosteroids with diet interventions (which I'd expect would have more of an effect on maintenance of remission, if anything)... I just don't think it's that simple. Remember that people with untreated CD will have flare-ups that occur and resolve spontaneously for some time before the disease starts progressing and surgery is required.

That being said, non-elimination, generally-healthy diets, on the other hand, are always recommended, as is regular physical exercise.

I think railing against diets like you're doing here is harmful. Research is finally going in this direction, and as you can see, there's plenty of annecdata for people where dieting was beneficial, or even let them go into full remission. Sure, there's no diet that works for everybody, and diet doesn't help everybody, but that just means it's more difficult to do studies on, not that it's a wild goose chase.

Unfortunately there is no cure and everyone’s disease can differ so there isn’t one particular way to manage it. You’re going to have a journey of trial & error, my recommendation is to find a great GI doctor who will work with you on the medication side of things as well as advise you on the dietary aspects. I run the r/CrohnsDisease subreddit[0] which has a pretty responsive community and a ton of useful information you can search through to further educate yourself.

[0] https://www.reddit.com/r/CrohnsDisease

Thank you for running this subreddit. I lurked it quite a bit early on in my diagnosis and it was a tremendous resource. If nothing else, felt a little bit less alone and made the path ahead seem slightly less scary/uncertain. Thank you again!

ditto

Thank you! I will check this resource.

I know a few people who have successfully “cured” themselves of it, despite the naysayers. I don’t know if it is technically a cure or remission but the net impact to their quality of life speaks for itself. This is not medical advice and I don’t know the details, unfortunately, but it basically came down to finding the right diet and avoiding industrial oils, highly processed food, etc.

Downvote away!

Overeating, bigger meals, more processed foods, less veg, more chemicals used to grow food? I wouldnt look for one solution, I would look for many solutions. Its too simplistic now a days to look for one cause and one solution.

So omega 3 can cause inflammation yet its a popular supplement. What about gut bacteria, some ulcers can be caused by gut bacteria which a course of antibiotics can treat, but most people dont know penicillin based antibiotics get broken down into penicillamine which helps remove copper from the liver used for Wilsons. Now Heme and Chlorophyll are identical except Heme has an iron ion and Chlorophyll has a copper ion, but I've never heard a doctor tell me or anyone else to eat more greens or take a chelated copper supplement when prescribing a course of penicillin antibiotics, do they want the infection to clear up?

Its also worth noting, that when Alexander Flemming discovered antibiotics he said antibiotics need to keep being taken until the infection has cleared up. Now GP's issue standard fixed length courses and tell us to come back if its not cleared up and we wonder why we have antibiotic resistance!?!

If anything the gold standard is to use antibiotics initially whilst phages are being developed to target the infection and then go onto the phages. Phages are expensive but mass use could bring the price down.

And with antibiotics, its worth bearing in mind that bacteria can go dormant in the body and lie in wait until conditions are good enough for them to go active and breed again and like Covid they can evolve. Bacterial strains can be used to work out who has come into contact with others (sexually) who have the same strain infection.

And if you visit planet earth's deep freeze, ie polar regions, you might be able to find some ancient strains of bacteria.

Anyway I'd look for a multitude of solutions and be ruthless with failure if you want results. You only live once, demand the best, help drive up standards in every part of life!

Chlorophyll has magnesium ion, not copper. See below link for reference. But there are chlorophylls that have copper ion so you have to be careful which greens you eat if you want copper to be present.

https://pubchem.ncbi.nlm.nih.gov/compound/Chlorophyll

https://en.wikipedia.org/wiki/Chlorophyllin

Others have provided good advice about medicinal management. I know from my own personal experience with a close relation.

What I haven’t seen mentioned yet is the FODMAPS diet to control symptoms [0]. This is a diet specifically designed by Monash University, an Australian research institution, to treat IBS and IBD flare ups about one decade ago. It is based from modern science, it is easy to follow (you can run online searches for specific ingredients if you forget), and it allows for quantitative measurements. FODMAPS stands for fermentable oligo-, di-, mono-saccharides and polyols, which are types of carbohydrates that aren’t absorbed well by parts of the GI tract. Another comment mentioned The Specific Carb Diet, but that is outdated and will needlessly restrict your diet and freedom. For example, grains are ok: it’s the soybean oil used in cheap bread that isn’t.

The person I’m close to with Crohn’s enjoys a life unencumbered by their disease. They take their medicine once every two months and they eat out at restaurants or at other people’s homes without a second thought. They eat dairy products, which are not immediately FODMAPS friendly, but avoid garlic, onion, and broccoli. They know they can eat green beans, but not pinto beans. Because of the modern research that underpins FODMAPS, they know they can use garlic oil to get the same flavor but without any of the FODMAP carbs. But, because they follow the diet most of the time, they can occasionally “cheat”, too, and eat some of the high FODMAPS foods every now and then.

You can take charge and your child does not have to suffer. You have agency. Good luck.

[0] https://www.hopkinsmedicine.org/health/wellness-and-preventi...

Enteral diet for Crohn's pediatric cohorts has roughly the same effectiveness at remission as corticosteroids.

The article linked briefly mentioned this, but you'll find more info in this excellent meta-analysis here: https://pubmed.ncbi.nlm.nih.gov/33450982/

Good luck.

Refrigeration has also enabled extremely long shipping chains for produce.

My grandparents bought everything local, or grew their own. They canned, and preserved their own food too.

Meat was the same too. Local bought and butchered.

Now things are shipped tens of thousands of kilometers, and many vegetables and fruits are picked pre-ripe, so they will survive the journey.

It could be cold-evolved bacteria. But it could also be that now, we are exposed to many orders more bacteria, than before.

What human in the past, ate an orange from Isreal, cheese from Australia, almonds from California, meat from Alberta, broccoli from Mexico, onions from South America, while living in Canada, at the same meal?!

In the old days, everything you ate was local, either from preserved or local stores (grain silos, etc). So all the bacteria you ate was local as well.

> It could be cold-evolved bacteria. But it could also be that now, we are exposed to many orders more bacteria, than before.

I'm not a doctor but I do gravitate to reading about gut bacteria. It's fascinating. It also seems to be fragile, there's a delicate balance. With that said, aside from some bacteria evolving to survive refrigeration, perhaps there is also "converse" bacteria that did not evolve? So the balance that we would get from local non-refrigerated meat doesn't really exist now? Freezers are changing the bacterial composition (as opposed to say the chemical composition). It's not what we're getting more of, but also less of. Maybe?

Edit

Just saw this listed on HN

https://www.economist.com/science-and-technology/microplasti...

This is the true problem, in that, with so much change, it could be 10 problems. Person A has 1,4, and 9 as a problem with said symptoms, and so on..

Good paper. If true I wonder how it could be combatted effectively. It's hard to do without refrigeration. Perhaps its related mainly to fast food, where the consistent refrigeration is less sure.

CD has also been associated with Mycobacterium paratuberculosis, because that is implicated in the similar Jahne's disease in cattle and sheep: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4894645/

Lastly, I also wonder if refrigeration has a role to play in Multiple Sclerosis. It also has strong relations with modern lifestyle and latitude (temperature). The suspect virus in the MS case seems to be https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus aka mononucleosis / glandular fever.

> It's hard to do without refrigeration.

We’ve changed our diet since refrigeration is available. That’s an argument of vegetarians: Since we want meat, we need a refrigerator, which in turn makes us eat a lot of processed food. Frozen food, yoghurts, milk-based products, all of those are heavily processed, we try to “fill in the rest of the fridge”. My vegetarian friends reversed it: Eat veggies and fruits in quantity, grains, nuts, beans, bread, spices, oils… I’m a meat eater but I’m just passing the word: It is possible to live without refrigeration without compromising food, except meat.

I don't know, refrigeration seems pretty useful

Every vegetarian but not vegan I know, including myself, eats dairy like crazy so I cant really say I experience this sentiment.

Also fruits and veggies are basically the definition of food that needs refrigeration or “processing” for preservation. Strawberries that aren’t specifically bread to be hearty can spoil in less than a day. Prior to refrigeration we leaned on (and probably still do if you have a garden) canning, drying, pickling, fermenting — I mean making garlic confit was originally a way to preserve garlic.

And you can preserve meat fine without refrigerators, that’s why we started salting, smoking and curing meat.

The thing you compromise without a refrigerator is the ability to have truly fresh fruits, veggies, and meat for longer than the natural spoiling time.

> I mean making garlic confit was originally a way to preserve garlic.

Why would someone need to preserve garlic? Dry unpealed heads should stay good for months in a cold, dry, dark place like the back of a cupboard. It stores about as well as potatoes or onions in my experience.

Just one minor nitpick...the literal purpose of yogurt was, originally, to eliminate the need to keep milk cold. It's a preservative. You don't need to refrigerate yogurt. That being said, most yogurt sold in the store has just about as much sugar in at as ice cream. (Which may be closer to the reason why we have so much IBD in the Western diet.)

Hah.. I am from Turkey (Yogurt is a Turkish world) and I grow up eating yogurt very regularly. I am living in states but my wife regularly makes yogurt at home - no sugar :). Though we keep it in the fridge as it would go bad much quickly otherwise. Also, it tastes better when cold. .. Anyways, I am diagnosed with CD a couple of years ago, so I don't believe it is "western diet".

While impractical for majority of people, you could just eat meat soon after you kill it.

Before some "wise guy" comes to parrot about how "correlation does not imply causation" [1], please, take some time to read the article as it has some valuable information.

[1]: We've all heard that already, it doesn't impress anyone anymore.

And it's not even in the article title.

In fact, the text says " Figure 1A compares the annual incidence of the disease and the household equipment rate in several countries. There is a temporal correlation between these variables."

A temporal correlation is something entirely different to a cross-sectional correlation (arrow of time etc.)

I tried researching what a temporal correlation is. Do you have short explanation for it?

Temporal correlations are a family of things, since there are many degrees of freedom to choose what to compare with what.

A very simple test is the "Granger Causality", which tests whether one timeline significantly predicts another one. You can formulate more complex models such as time series a predicting b with a certain lag.

Ultimately, the idea is most often to remove unrelated factors (such as control variables, seasonality, self-influence i.e. autoregression) and then measure how well one series at t(0) predicts another one at t(1), while optionally doing some sort of hyperparameter optimization for the lag (i.e. determine which lag works best).

Thank you. Much appreciated.

A temporal correlation is basically saying that the correlation is strong when broken down by time.

Of course, causation is trickier; roosters don't cause the sun to rise, even if they occur simultaneously (or even slightly before!).

Most importantly, this is a hypothesis.

If you want to suggest a possible causal mechanism, then it's entirely appropriate to suggest that something causes something else with which it appears correlated.

It's not intended to be a proof of anything, just a reasonable and interesting proposal which highlights further lines of investigation.

Did you just post an angry reply to a comment that you imagined someone might make?

Tangential, I know, but my mother-in-law, who has suffered heavily from Crohn's since her younger days, last week turned 100 with fabulously flying colours; mobile, mentally fit and could easily pass as a wellpreserved 80. The Crohn's is still there, of course, but kept in reasonable medical check.

End of anecdote.

Here are some other things that correlate with advent of the refrigeration (btw - people in Europe and Northern US had always had ample access to refrigeration - in big parts half of the year in a cellar the temperature will be below 10 degrees C).

Reduction in fermented foods - with fresh produce all year round - stuff like sourkraut becomes a flavor agent and not a staple. Ditto with all other kinds of lactobacilic pickling.

The rise of the dry yeast, mighty kitchen aid at home and the industrial bread at scale -

In the dry yeast the ratio of yeast to lactobacilli is different than in cake yeast (and cake yeast if often inferior compared to sourdough starter when it comes to bio variety)

The mixer (and chorleywood) at scale allows for faster dough development - and usually the recipes for home are insane - something like 7g of dry yeast for 500 g of flour - it pumps it full of air fast (2h), but you have more gluten that is often not chopped enough by protease action and the bacteria.

The traditional home bread making was overnight proof.

Also the flours today are much stronger than before so we get more gluten with them. And because wheat gluten is very useful - it is often added in all kinds of processed foods.

Top that with what I frankly consider abuse in both human and animal populations that probably are not terribly beneficial to people gut biome and variety.

And all this starts at the same time the refrigeration got going.

And industrial bread is roll of the dice - it may vary from really good to cardboard. But the cardboard seems to be way more popular.

It seems like a lot of this is equally explainable as better diagnosis, meaning CD could have been around at similar rates much longer but medical science just didn't diagnose it as such or at the same rates.

It's a question you always have to ask when you see an increase in, well, most things: Is it an actual increase, or are we just better at noticing it now?

Surprised this isn't higher up. Crohn's was formally named/created as its own clinical entity in 1932 and the paper shows one of its graphs (Fig 1) starting in the 1940s. I doubt 8 years was enough for awareness to get out to the entire physician community about the existence of the disease and there were probably a lot of misdiagnosed cases in its early days (since crohn's has a clinically diverse presentation).

Anecdote of course, but my personal case may support this claim.

My grandfather died when he was 34 (1960's) from an intestinal ulcer. Not diagnosed with anything. Born in south America but from Jewish immigrants (relevant as I've been told Crohn's is more prevalent among Jewish people)

I was diagnosed with Crohn's when I turned 31, after having a colonoscopy because of severe diarrhea. Humira's been working so far, I've been on it for 2 years after other meds didn't do the trick. Edit: just in case it wasn't clear: I also had a pretty big intestinal ulcer. But getting diagnosed helped it not get worse, and after going on humira, it eventually got better

It’s remarkable to me how little progress there has been in a scientific understanding of the gut. Why does it avoid understanding by modern science?

My own experience is one of life long IBS. The worst I had it was in university, where I was in such intense abdominal pain I basically lay on my couch in cold sweats for a month straight unable to move and barely eating. Even with strong painkillers the pain was only slightly numbed. Gastros at UCSD couldn’t figure it out, had barium xrays, all the various escopies and they had no clue what was going on. Finally they wanted to perform surgery to have a look but all pain went away right before the surgery was scheduled. So bizarre.

I am from India, where for centuries, stored food was considered poisonous. Even a decade ago, in-spite of wide availability of refrigerators, most households never ate stored food, even if it was only for a few hours. The exceptions being pickle and powders (Many Indian cuisines have items that are fried and ground lentils and spices, a very common food and are made and stored for 6 months to a year)

Things are changing now though. Junk food (Pizzas, burgers, etc) which consists mostly of frozen ingredients that are processed, a change in lifestyle leading to lack of time to prepare meals at home, etc have led to increased consumption in processed foods.

Totally anecdotal-- as someone of Indian culture living in America, I'm convinced there's something in it that the American diet lacks. The longer a stretch of time I eat the american diet for more I get vague stomach trouble and a feeling of unwellness. But then I eat a nice spice filled curry with some rice and I suddenly feel great. I almost exclusively eat Indian food now as it's one of the only types of foods that prevents my stomach troubles. Some other foods like Pho also seem to treat me very well. It could be a lot of things-- less user of processed oils, lack of gluten, lack of artificial ingredients, etc. I'm not quite sure exactly what it is

I wonder if anyone has tried a treatment with a non-refrigerated diet

EDIT: I read some more and found “Nutritional treatment of CD was first proposed by Voitk in 1973. The treatment consists of administering a specific liquid formula…”

It doesn’t say if that formula is refrigerated or not. My assumption is that it isn’t because it’s cited here, but that is an assumption.

Right, this is what the authors demand:

"as no single experiment can definitively confirm the theory, we must continue to test it with additional works. Among them [and even if insufficient to definitively validate the hypothesis], a randomised clinical trial comparing patients with low versus high exposure to Yersinia would be an important step."

Essentially they found that tube fed diets do help, and they are effectively refrigeration free.

> "Furthermore, no specific foodstuff has been incriminated in CD, and combining enteral nutrition with a highly controlled oral diet was recently shown to be effective" ... "It should be noted, however, that enteral nutrition effectively excludes refrigerated foods."

They go on to say that enteral nutrition differ from regular diets so that the mechanism that make them work may not to the fact that they are unrefrigerated.

A refrigeration free diet would not be impossible today, but hard. Given he prevalence of this bacteria today, non-electric cold stores would probably also need to be removed from the supply chain, making even a pre-industrial Western diet problematic.

A sufficiently cooked vegan diet, minus everything that causes problems with people that suffer from Crohn's Disease, maybe would work? Ideally with vegetables that have not been refrigerated. Winter would be pretty bleak.

If tube fed diets are the trick, why not just go with Soylent? It's about as bacteria-free as food can reasonably get.

For many with Crohn’s, this is more or less the treatment. Many times it is less because it’s most effective, and more because surgeries removing portions of the large/small intestines has made them incapable of digesting other forms of food. I guess my question would be - would you want to live on Soylent the rest of your life, if it could be avoided? I think most would answer no.

Better off getting a proper elemental diet. Plenty of things in soylent that can set me off if I’m already flaring or predisposed to one.

IIRC studies have generally shown that elemental and polymeric formulas are similarly effective, but I agree that Soylent has some strange stuff that prolly wouldn't agree with me.

I had a good experience with Ensure Plus (chocolate) which was used in a clinical trial or two in Australia (or maybe New Zealand). But I used the one without fiber whereas the one with fiber bothered me.

Ensure has been a godsend for me too particularly during Ramadan. lol. A great way to get some wholesome calories when needed.

Pre-industrial western diet cold stored food was either salted (meat), fermented (cabbage, cheese) or alive (fruit, root vegetables, potatoes)...so, it's possible there was completely different microbiology than in modern processed food.

Interesting idea, but very difficult to account for so many other major factors. First time i've read about the https://en.wikipedia.org/wiki/Yersinia idea.

Flipside, I feel like the theory is just finding a sideline relationship.

Early 1900s had so many major experiments start happening. Refrigerants is only 1 of them. How about major new pesticides? How about a major shift from eating animals to plants? We also have similar discovery of obesity growing about the same rate.

There's a clear and obvious relationship here. Everything is food related.

So what happens if you simply reverse what changed in the last 100 years. Try carnivore and after some adjustment period your crohns goes away. As you reintroduce plants into your diet, crohns symptoms return.

I have to wonder what other unintended side effects of modern tech/modes of behaviour we'll find.

This research group is developing a therapeutic Crohn's vaccine:

https://crohnsmapvaccine.com/

https://crohnsmapvaccine.com/faq/

Their idea is that Crohn's is caused by the bacterium mycobacterium avium subspecies paratuberculosis (or MAP for short). MAP has been proven to cause Johne's disease in cattle so the idea is that Crohn's is the same thing in people.

They've started safety trials in patients with Crohn's. The next step is a wider trial to demonstrate efficacy.

Pretty strange that there's one researcher listed and a dozen "social media / fund raisers". Suggests this isn't serious research and is instead a hype factory for acquiring money.

Sure. You've uncovered their dastardly plans.

Unfortunately the lead researcher just passed away: https://www.kcl.ac.uk/news/in-memory-of-professor-john-hermo...

The actual clinical trial looks promising though: https://www.isrctn.com/ISRCTN36126048

So, a bacterium called Y. pseudotuberculosis is suspected in the paper at the top of this thread, and one called M. avium ssp. paratuberculosis is suspected by the group at your link.

I have crohns disease.

Many people with my disease report improvement or even remission with specialized diets, but what's interesting is how disjoint these diets are. Some people eat only meat, others only vegan, others high-fiber, others low-fiber, and so on.

The only similarity I can draw between these diets is that they greatly restrict the variety of food eaten. It makes me wonder if the modern practice of eating a variety of foods is harmful to our gut biome. I reckon variety results in constantly changing bacteria bloom/die-off scenarios. The blooms cause immune response flare-ups and accelerate bacterial evolution, while the die-offs cause extinctions, reducing the variety of our gut biomes.

Anyway, this is just an armchair hypothesis, but I'm curious to hear if anyone has thoughts on it. I note that it fits the story of Crohns being a modern "first-world" disease, as for most of history humans ate the same few foods everyday, just as animals do.

tl;dr: eating everything in moderation may be terrible advice

This is a really interesting point, and something I've pondered before. Bacterial die off can be particularly bad because Lipopolysaccharide (LPS), a form of endotoxin, is released from the membranes of the dead bacteria and can potentially find its way into the bloodstream if the tight junctions in the gut are compromised (ie: intestinal permeability / leaky gut). LPS is implicated in many (maybe most) autoimmune conditions, heart disease, non alcoholic liver disease, and a host of other conditions. If a constantly changing diet is causing regular shifts in the microbiome, this would cause regular bacterial dieoff events, and potentially regularly elevated LPS in the bloodstream.

It would seem logical that the ideal situation in the gut is a diverse and stable microbiome. Which makes sense if you use ecology as a comparison, where something like an apex forest is both stable and diverse. And this is made possible because it has a very slow changing set of energy inputs. If the soil composition was constantly changing in a forest, there would be regular events of trees dying off and getting replaced with less mature species, resulting in both less stability and diversity. The land would also be likely to get overtaken by invasive species, as you can observe on patches of land that are routinely disturbed, like the side of a highway.

I can't find the link right now, but a fascination of mine has been all potato diets (the potato hack). One guy who did this (or maybe there was a study) tested his microbiome before and after, and the after test showed a much healthier balance of species and a greatly increased diversity. At the time I remember being surprised by the increased diversity, as I, like most people, assume greater diversity of food would result in a greater diversity of bacterial species. But I have to imagine that a general characteristic of diverse diets is that they're not very stable. If someone is eating 100 different foods, it's unlikely they eat all of those 100 every day, so there is a constantly changing input to the gut, which would make for a constantly changing bacterial colony, which in theory would result in reduced diversity and regular dieoff events.

This all makes a lot of sense too if you think about hunter gatherers and early agricultural peoples. They may have eaten a large number of plants and animals in the course of a year, but I imagine their diet would have rotated very slowly. So maybe they're foraging or growing a few things one month and that comprises the majority of their diet for a month or two. Then new things come into season and the diet shifts, and the microbiome shifts with it. This is much more stable than us modern humans that eat Thai food on monday, burgers on Tuesday, Mexican on Wednesday, and then Salad on Thursday when we're feeling bad about our food choices. It's only in the modern age with long distance shipping and refrigeration that we've had the luxury of changing our diets on the daily. Is this abundance of choice killing our guts?

I think I'm going to experiment with a simple diet to see if it can fix my gut issues (IBS, maybe SIBO). An all potato diet seems too boring, but I think I can handle potato, steak, and broccoli, which sounds pretty similar to a bodybuilder's diet. A ratio of 6:2:1 by weight (potato:broccoli:steak) meets all nutritional requirements, other than coming in a tad low in calcium. Daily intake of 60oz potatoes, 20oz broccoli, 10oz sirloin steak, and 1/2 tsp calcium carbonate satisfies all dietary requirements and clocks in at 2200 calories.

Hey I saw your comment on another thread about CFS (couldn’t reply there) and was wondering if you could elaborate further on interventions you’ve tried, particularly for exercise. I’m not sure I have CFS, but I do seem to at least have a sleep problem of some kind that is exacerbated by exertion. Wondering if you found a way to successfully do something like e.g. graded exercise therapy. Any other advice you’ve written that you could point to would be greatly appreciated!

Why can't they just test this hypothesis that Yersinia bacteria growing under refrigeration cause the symptoms?

Simply culture a small amount of Yersinia, spread it on a cracker and give it to a Chrohn's suscetiple person (and also placebo) and repeat with non-Chrohn people. The disease tends to have quick flare ups, so it should be easy to quickly draw a conclusion (unless they don't think flares are directly related).

It's almost guaranteed to not be caused by Yersinia exclusively. Many whole-microbiome sequencing studies have been done, and this would have come up if it were that simple. More likely, a mix of Yersinia and other species will be selected for.

It does raise novel ideas for how to work with and interpret microbiome studies. I'd like to see microbiota in fecal samples be sequenced before and after a cold test, for example. But even then, you might not see any results. It could be a metabolomic problem more than a microbiome problem, or even more likely still, both combined with an immune repertoire problem and other dysregulations.

Possibly of interest to some: the bacteria that caused the various Black Plague pandemics over time is in the same family: yersinia pestis.

The paper notes as much:

> Since Y. pseudotuberculosis is genetically very similar to Y. pestis, we hypothesised that NOD2 mutations may have provided a survival advantage to mutation carriers in the past during plague epidemics. As supposed, the current frequencies of CD-associated NOD2 mutations [ie, in the offspring of plague survivors] are correlated with the intensity of past Y. pestis epidemics in European and Mediterranean countries.

Have to be careful of incidence data over time. A lot has changed in the way we define diseases, as well as how we investigate them, from the point at which you see a general practitioner to whether you would get an endoscopy, to how the disease is defined histologically.

Anybody else notice the typo in the first figure? The axis has 1940 where 1970 should be. Normally not noteworthy but funny to see 1940s twice on the x axis, and... how does this happen? Do people manually type their axis labels or something?

Surely that correlates with a bunch of other stuff though like advent of processed food?

After suffering from mild IBS, time and again I get reminded how important gut health is. It is definitely the core of the immune system. Screw up the gut health it will lead to all sorts of ailments.

(Haven't gone through the whole paper) Does this apply to folks suffering from IBS as well ? Or is it better to avoid extremely refrigerated food to be sure ?

Yersinia presumably multiplies adequately at a wide range of temperatures?

Are there papers on its doubling in cold storage Vs pantry storage?

A correlation, you say?

https://behindlabdoors.com/content/images/2015/Nov/chart.jpe...

This is a bad title. Other trends since 1910 (the last 110 years)

- Electromagnetic wave use increase via radio, television, cell and internet, and microwaves

- Maximum altitude humans have reached

- Number of bodies on Everest

- Increase in pounds of enriched uranium and available thorium

- Increase in the number of people who have read work by Ursula K. Le Guin and Isaac Asimov

None of these have causal implications. But the article does connect a qualitative theory and show correlation -- suggesting the hypothesis could be a thread to chase down.

This is the key thesis:

> According to the cold chain hypothesis, the development of industrial and domestic refrigeration has led to frequent exposure of human populations to bacteria capable of growing in the cold. These bacteria, at low levels of exposure, particularly those of the genus Yersinia, are believed to be capable of inducing exacerbated inflammation of the intestine in genetically predisposed subjects.