[HN Gopher] First-in-human implantation of bionic device to halt...
___________________________________________________________________
First-in-human implantation of bionic device to halt Crohn's
disease (2023)
Author : deluxeroyale
Score : 215 points
Date : 2024-04-01 06:43 UTC (16 hours ago)
(HTM) web link (florey.edu.au)
(TXT) w3m dump (florey.edu.au)
| pazimzadeh wrote:
| This paper seems to describe the general strategy:
|
| Neuronal regulation of the gut immune system and neuromodulation
| for treating inflammatory bowel disease
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8565205/
|
| It would be incredible if it works, since it would avoid
| treatment with systemic immunosuppresives which can promote
| infection/cancer. However maybe there is still a local risk of
| the above?
|
| I would also be concerned about the implant getting covered in
| nasty biofilms over time.
|
| If this type of thing works, does that mean that medication that
| target the nerves might work against inflammatory disease?
| yosito wrote:
| I think most of these claims are BS, but I've met several
| people who have claimed to heal their own inflammatory diseases
| through non-medical practice to help regulate their vagus
| nerve. I know for me, these types of practices seem to help
| manage my symptoms. So maybe there is some connection.
| pazimzadeh wrote:
| What claims are BS. What did your friends do wrt their vagal
| nerve
| epgui wrote:
| That's wishful thinking. Please don't go off your IBD meds or
| you will regret it some day.
| fao_ wrote:
| The vagus nerve sits inside the collarbone right next to the
| carotid artery. As a doctor told me once, if you're able to
| physically stimulate your vagus nerve, you need to get to A&E
| posthaste, lol
| jdadj wrote:
| Look up vagal maneuvers. Used by a subset of tachycardia
| patients to reset to a typical heartbeat.
|
| https://en.m.wikipedia.org/wiki/Vagal_maneuver
| hanniabu wrote:
| What's A&E? Googling only shows the cable network
| firejake308 wrote:
| Accidents & Emergency is what the Brits call the
| Emergency Room
| JohnVideogames wrote:
| "Accident & Emergency" - you may know it as the Emergency
| Room, but it's commonly called A&E in the UK
| astura wrote:
| British for "emergency room."
| firejake308 wrote:
| That makes more sense for IBS (irritable bowel syndrome) than
| it does for IBD (inflammatory bowel disease). IBS is caused
| by the gut-brain nervous system acting up due to stress, and
| vagal maneuvers forcibly turn off the fight-or-flight
| response from the nervous system. On the other hand, IBD is
| caused by your immune system attacking itself in the gut, and
| the T cells aren't really connected to the nervous system in
| any physiologically relevant way. So your friends were
| _probably_ talking about IBS, not IBD.
| trebligdivad wrote:
| > I would also be concerned about the implant getting covered
| in nasty biofilms over time.
|
| The implant doesn't necessarily sit inside the gut though does
| it ? Just somewhere it can ping the relevant nerve.
| pazimzadeh wrote:
| I don't have the citation for this, but I learned in a class
| long ago that most implanted devices end up covered in
| biofilms, it's only a matter of time. Especially if it's
| plastic. e.g. breast implants, catheters, etc.
| brnt wrote:
| Bacterial biofilms? On implanted implants? How do they get
| there?
| hanniabu wrote:
| Your bodhi is filled with bacterial and archae, if they
| create a localized stronghold they'll form a protective
| biofilm.
| epgui wrote:
| I highly doubt that this would obviate the need for biologics,
| but I think it would probably work very well in combination.
| atombender wrote:
| > can promote infection/cancer
|
| Note that while TNF inhibitors like adalimumab (Humira) have a
| black box cancer warning in the US, this was based on assessing
| a small number of studies early on. We now have more than 20
| years of studies and patient registry data, and later studies,
| including meta-analyses, have concluded that there is no
| additional risk of cancer with these TNF inhibitors.
|
| E.g. see:
|
| https://pubmed.ncbi.nlm.nih.gov/24361468/
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770105/
| spenrose wrote:
| A co-author of the first study is employed by Humira's maker;
| the second study was funded by it. Doesn't mean they are
| wrong, but it does suggest some skepticism is due.
| atombender wrote:
| Those were only the first two studies that came up on
| PubMed. There are a number of studies that support the same
| conclusions.
| pazimzadeh wrote:
| Yes but that's one drug, which does increase your risk of
| infection according to your links. There are other newer
| drugs for which we don't have 20 years of data.
|
| The best thing is if we could target these drugs to only be
| activated in areas of active inflammation.
| atombender wrote:
| Yes, we have less data on newer drugs, but TNF inhibitors
| are currently the go-to medication for many autoimmune
| disorders, including Crohn's and UC.
|
| Infection risk is currently the case with all current
| medications that act on the immune system. In all cases we
| are merely suppressing some pathway where the end goal is
| to reduce the immune response.
|
| ThatMs really the best we can do until we actually identify
| the causes, and can address that rather than "dialing down"
| our immune systems.
| rgmerk wrote:
| I have Crohn's but am one of the lucky 20% who is in long-term
| remission without surgery and without the more problematic drug
| therapies - thus far!
|
| But if this works as well as hoped it will bring a lot of peace
| of mind that if I do ever need surgery, I won't be going back in
| for more every few years.
|
| Medical research is awesome, for all its inefficiencies.
| epgui wrote:
| Which drugs are you talking about? Pretty much all the
| biologics for CD have amazingly positive safety profiles...
| 6177c40f wrote:
| All of them increase risk of cancer (EDIT: upon further
| review, maybe not all of them? Or maybe just with combination
| therapy?) and severe infection. Many of the biologics are
| also quite new, and the long term effects of taking them are
| not well understood. Plus, in some cases they don't work well
| enough alone and so multiple drugs are required (a biologic
| in combination with something like methotrexate or
| azathioprine is typical), which further increases risks.
| Anecdotally, I know of a couple people who had bizarre and
| severe immune reactions to biologics that left doctors
| baffled, so that's something that can also occur, apparently.
|
| Also some people are just prescribed steroids like prednisone
| for whatever reason, which has some pretty negative long term
| effects.
| jessriedel wrote:
| At least for Ulcerative Colitis, there are safe drugs that
| are much less effective (mesalamine) but the strong
| effective drugs all come with long-term cancer risks
| (prednisone, remicaid, entyvio, etc), as you say. The newer
| drugs like entyvio are generally less risky than the older
| ones, mostly on account of being more targeted, but the
| risk is still significant. I imagine the situation is
| similar for CD.
| 0x00_NULL wrote:
| Becareful with Stelara. The body reuses the same
| inflammatory cytokine group that is the target in the
| lungs to fight off infection. So, your lungs can't fight
| infection very well on Stelara small issues can very
| quickly become life threatening.
|
| I got Pneumonia that turned into Sepsis in about 60
| hours. It happened so fast that the doctors brought in an
| addiction specialist. The only other time they've seen
| this is when drunks pass out and aspirate on their vomit.
| (Crohn's doesn't let me drink, so we can rule that
| out...) After days of studies, we found the warning label
| on Stelara about the elevated risk of lung infections. My
| care team reached out the Janssen and confirmed it. After
| about 4 days of IV antibiotics, I was sent home to
| continue on oral antibiotics.
|
| Still, if I die from something like this, it's still
| worth it to take these biologics. At least I lived a much
| better life for a while thanks them. The side effects can
| be life threatening, but the ability to have a life is
| worth it.
|
| TLDR: On Stelara, I went from Pneumonia to Sepsis in
| about 60 hours while taking oral antibiotics. The
| warnings on the labels of the biologics are serious - and
| the side effects can be life threatening.
| epgui wrote:
| I mean if you're thinking about the big picture, chronic
| inflammation increases cancer risk even more.
|
| For corticosteroids, I agree... But that's not supposed to
| be used long term and is a bit of an emergency resort.
| 6177c40f wrote:
| Not supposed to be used long term, but sometimes they
| are, I personally know two people who are on
| corticosteroids long term because nothing else works.
| You're right though, it's all a calculated risk because
| untreated disease can be life threatening, in addition to
| being debilitating.
| pants2 wrote:
| I had a severe anaphylactic reaction to Remicade, it was a
| terrifying experience. The doctor had seen it a few times
| before so apparently it's not uncommon.
| wholinator2 wrote:
| On your first injection or a little while in?
| pants2 wrote:
| It was on my second infusion. Started having trouble
| breathing about a minute in.
| spondylosaurus wrote:
| Untreated bowel inflammation also increases your risk of
| cancer significantly. If cancer risk is on the table either
| way, might as well take the drugs that increase your
| quality of life in the meantime :)
|
| Plus--you have a chance of beating cancer. But a colectomy
| is a one-way trip!
|
| (Prednisone will absolutely fuck you up long-term though.
| No cancer risk afaik, but osteoporosis risk is through the
| roof. I've heard of UC patients who needed joint
| replacements in their 30s from long-term steroid use...)
| arcticbull wrote:
| > Many of the biologics are also quite new, and the long
| term effects of taking them are not well understood.
|
| It's interesting that this has become a talking point now
| for basically any new therapy. As soon as something new and
| promising comes out, we "don't understand the long-term
| effects" -- but this discounts (1) the years and years of
| research and development that go into them (2) the decades
| of research and development that has gone into the
| underlying platforms (3) the trials that have happened and
| (4) the known and understood negative effects of the
| disease being treated.
|
| The FDA tends not to yolo new therapies.
|
| We see this with GLP-1's all the time. They have side-
| effects, what will happen later, etc -- as though obesity
| doesn't have side-effects, and predispose you to every
| disease known to man?
|
| I feel like this all started during the COVID vaccine
| hysteria, but maybe it was always there and I wasn't paying
| attention? I feel like a decade ago when a new treatment
| for a chronic disease came out people threw themselves at
| it.
|
| I guess maybe as a concrete follow-up question: how many
| years would it take before you felt comfortable with it,
| and why that number specifically? 10? 20? 30?
| 6177c40f wrote:
| I'm not trying to discourage the use of these drugs. In
| fact, I would absolutely use them if I required them-
| their potential benefits outweigh the risks. But I also
| must admit that I would still feel more than a bit
| nervous about it.
|
| I also should point out that "long term effects of taking
| them are not well understood" isn't my personal opinion
| per se, it's something I've read in the literature about
| these drugs, including relatively recent research (I wish
| I had a good source that summarizes this point, but I
| don't have one on hand). Concern about long term effects
| is real and legitimate, and pre-dates concern about
| COVID-19 vaccines (another instance where I believe the
| benefit far outweighs the risk, for the record). There
| must always be a balance between spending time testing
| vs. getting a pharmaceutical deployed. It would be absurd
| to imply that we're not making a tradeoff here.
| pseudosudoer wrote:
| Your statements are true, but please present this
| information with nuance. Yes you have an increased risk of
| cancer, but it's a small percentage and not a guarantee.
| Untreated bowel disease is guaranteed to have side effects,
| horrible QoL, and a much higher risk of cancer than
| medications.
|
| Prednisone is the one exception though, unless life is
| completely unlivable or you have a significant chance of
| death (typically from perforation) I would avoid it.
| 6177c40f wrote:
| I think that the benefit of the medication is clear, or
| else why would anyone take it? I definitely do not want
| to imply that I don't think the cost-benefit analysis
| comes out in favor of taking the medication. I just
| wanted to underscore how difficult of a situation it is
| to have a disease that necessitates the use of these
| drugs.
| jml78 wrote:
| My wife is on a biologic for psoriatic arthritis. We are
| scared of the long term impacts around cancer. Within 8 years
| of being on various biologics she was diagnosed with cancer
| late last year in her early 40s. No family history of cancer.
|
| We have no evidence biologics caused it but the fact that
| they reduce t-cell activity, it is definitely plausible. That
| is why all of them disclose the blanket cancer risks. She is
| not currently cancer free but we are concerned that the next
| one will be something with a much worse 5 year outlook
|
| We would rather her not be on them but they are the best
| thing that currently exists.
| computer7050 wrote:
| Rinvoq?
| jml78 wrote:
| That is one she has been on in the past. She has gone
| thru about 8 trying to find one that works best for her.
|
| She is currently on tremfya
| computer7050 wrote:
| Thanks for the response. I have a family member about to
| start on Rinvoq and cancer risk is weighing on my mind as
| well.
| jml78 wrote:
| I am probably sensitive because my mom passed away due to
| stroke prior to my wife being on Rinvoq but that was a
| bigger concern for me when my wife went on it. Learn to
| identify stroke symptoms.
| odyssey7 wrote:
| If so then they are a lesson in how misleading statistics can
| be.
| purple_ferret wrote:
| some of them you have to take with an immunomodulator to
| suppress the possibility of antibodies, and those increase
| the risks of lymphoma and some other stuff.
| deluxeroyale wrote:
| And the immunomodulotors(thiopurine) comes with an 2x risk
| of skincancer and 3x lymphoma (monotherapy). anti-TNF comes
| with an 3x associated risk of lymphoma (monotherapy).
| Combined it's doubled (6x risk of lymphoma) Integrin
| Receptor Antagonist are not associated with any increase of
| cancer.
| wholinator2 wrote:
| How did you do it?
| cjdell wrote:
| I initially wrote this as a reply to a comment by "NotGMan"
| mentioning fasting/paleo that got flagged. They could have
| approached the subject more delicately but I believe they have a
| point.
|
| About 3 years ago I had gut issues so bad I thought I was close
| to death. NHS couldn't see any problems and were basically
| telling me I'd gone nuts. They refused to do any further testing.
|
| After a year of suffering I tried a 7 day water-only fast and the
| pain finally went away. I broke fast with only paleo foods and
| stayed that way for 6 months. I gradually introduced other foods
| after that period with the last being gluten about 2 years after
| the initial fast. I am almost cured, however I will never abuse
| my gut in the same way again. Less carbs, more salads...
|
| This is just my personal experience of course but I have
| discovered so many other people with similar gut issues who are
| also being ignored by their doctors that you can't blame one for
| wondering if there is a conspiracy at play.
|
| I wouldn't have believed any of this a few years ago but now I
| have serious doubts in modern medicine's ability to deal with
| chronic health issues, especially in the gut.
|
| We do eat so many more processed foods (and other things) that it
| doesn't require that much of a stretch to the imagination that
| diet is a part of the problem or indeed the root cause.
|
| Lack of openmindedness bothers me immensely and the nature of
| human biology is under no obligation to fit into tidy boxes for
| the sake of our understanding. The real world is fuzzy.
| Buttons840 wrote:
| Decades ago, about 30% of the people who had celiac disease
| would waste away and die, especially children. Until a doctor
| noticed that if the people ate 12 bananas a day they seemed to
| do better. Of course, 12 bananas a day is a kooky diet, but
| people who eat 12 bananas a day tend to eat less of everything
| else, including less bread and gluten and so they would do
| better. Later science figured out bread was a problem and then
| eventually identified the specific protein (gluten) that
| effects people with celiac disease.
|
| I think there are other foods that bother different people, but
| we haven't managed pin down exactly which foods bother which
| people. It's a hard problem, but surely there are other cases
| of "if you just avoid this specific food ingredient, you will
| recover", just like celiac disease.
|
| So, on the one hand, sharing advice about which diets worked
| and didn't work can be helpful (like the 12 bananas a day
| diet). On the other hand, "I tried an unusual diet, which also
| happens to have a good amount of marketing behind it, and
| things are better" is one of the most common bits of advice
| you'll find for many diseases, and the problem is everyone
| recommends a different diet.
|
| A relative of mine has Chrons disease and was close to death
| before it was diagnosed, the doctors recommended a junk food
| diet basically, high calorie foods with almost no fiber, and
| that's how he eats now and is doing much better. I don't
| recommend everyone follow the same diet, but for whatever it's
| worth, eating junk food has helped my relative, true story.
|
| And this is what I mean, there's so much conflicting advice
| about which diet to try. I can't fault people for trying
| different diets, because I believe there are many unknown
| disease, like celiac disease, which can be treated with an
| exact (but as of yet unknown) diet. I also don't fault people
| for giving up and not enthusiastically trying every diet-of-
| the-week that gets suggested, it's tiring. Also, it's notable
| that the diets with the most marketing tend to be the ones most
| recommended.
| cjdell wrote:
| Thank you for taking the time to reply and not just
| downvoting me. That is enlightening and I'm glad your
| relative is in better health now.
|
| I'm certainly not suggesting there is a single treatment plan
| that'll work for everyone. As I said biology is fuzzy and it
| annoys me when people try to debug health issues like they
| were pieces of software. Discussing these things openly does
| help however.
| ibash wrote:
| I have chrohns. The diet change recommendation is something
| we hear often.
|
| For me my doctor recommends a mediterranean diet and to
| avoid emulsifiers, but it's definitely not a cure and not
| universal.
|
| If you go look at chrohns forums you'll see a lot of
| experimenting and a lot of different diets because (to my
| understanding) chrohns has a lot of different and unknown
| causes.
|
| For me high fiber foods can put me out of commission for
| the next day, for others it's the opposite.
| wholinator2 wrote:
| Yeah, there was a vegan girl once who heard i ha Crohns'
| and just would not stop telling me to go vegan.
| Apparently it had helped her IBD but she seemed incapable
| of believing that i had tried all that and that eggs and
| meat were the best diet for me. High protein, high
| calorie. I'll eat vegetables with make but always well
| done. If i ate vegan I'd probably be dead in 2 weeks.
| yterdy wrote:
| Taking this tangent and riding it: it's well-known that
| undiagnosed celiac disease in children stunts growth. After
| diagnosis and transition to a gluten-free diet, there is
| usually a period of catch-up growth (which unfortunately does
| not close the gap fully, usually). If there are a bunch of
| these silent sources of malnutrition, it could - alongside
| things like poor perinatal care for mothers and children, as
| well as the various sequelae of America's high level of
| economic inequality among developed nations - be one piece of
| the puzzle for why the adult height of Americans has stalled
| when compared to Europe (which would be an empirical finding
| and not just gussied-up scientific racism).
| SirMaster wrote:
| >I think there are other foods that bother different people,
| but we haven't managed pin down exactly which foods bother
| which people. It's a hard problem
|
| Sounds like a job for a neural net. If people would log all
| what they eat and how they feel. If the neural net had access
| to all the components of the foods they are inputting, surely
| with enough data a pattern would emerge of what common
| component in what they eat is correlated with worse symptoms.
| hanniabu wrote:
| Not that easy. I have sibo and depending on what I eat and
| how I eat it, it changes the effects it has on me. Also the
| amount and frequency. For example, if I have raisins at the
| start of my meal then I don't see issues, but if I have
| them at the end of my meal then I do. If I have it here and
| there then no issues, but if I have it a few meals in a row
| then it'll give me issues.
|
| And raisins affect me within 20min, but if I were to face
| something like potatoes or tomatoes then it doesn't give me
| issues until hours later (after my next meal or even the
| next day).
| cjdell wrote:
| You may benefit from speaking to a nutritional therapist.
| You _might_ have a biofilm problem at specific points
| along your digestive tract but I would let them make that
| determination and come up with a personalised treatment
| plan. Nutritional therapy is about "eating yourself
| well" and you might be surprised how effective it is.
| Good luck!
| tonnydourado wrote:
| > If people would log all what they eat and how they feel.
|
| Dietary data is one of the hardest things to collect.
| Either you need to hospitalize people and control their
| whole diet, and your sample size is small, because of
| costs, or you need to rely on self reporting, and your data
| is unreliable.
|
| Basically, much easier said than done.
| ijustlovemath wrote:
| Biological systems are highly nonlinear and time-dependent,
| and also very individual! People have been trying learning
| techniques in glucose control since the early 2000s, and
| have only seen limited success in very controlled
| scenarios. I think a simple neural net would fall short of
| catching all that complexity, at least using the current
| architectures
| Buttons840 wrote:
| Yes. I have celiac disease and I know people report
| following a strict gluten free diet for a whole year or
| more before they start to feel better. For me, I never
| did _feel_ better, but blood tests show that certain
| celiac-related antibodies have returned to normal levels.
|
| That's a very delayed and weak signal.
| BurningFrog wrote:
| People won't log all the food they eat, but supermarkets
| actually have data on what food people _buy_.
|
| So correlating that data with people's health could be very
| interesting!
|
| I don't think that has much chance getting past an IRB
| though.
| ijustlovemath wrote:
| Youd have to somehow control for waste and individual
| consumption within a household, which would be very
| difficult!
| olyjohn wrote:
| God forbid we use the data to do something good. But for
| marketing? Yeah no problem.
| CWuestefeld wrote:
| _I don 't recommend everyone follow the same diet, but for
| whatever it's worth, eating junk food has helped my relative,
| true story._
|
| Crohn's disease affects each patient differently. Depending
| on what part of the gut is being attacked [1], different
| digestive processes are implicated. That will lead to
| different kinds of foods being potentially problematic (as
| well as leading to a need for different kinds of
| supplementation).
|
| The bottom line is: your mileage WILL vary.
|
| (I've had Crohn's for nearly 45 years, since I was an
| adolescent.)
|
| [1] My doc once told me about a patient he had that was
| affected in the throat!
|
| ETA: for my personal experience, the one thing I can't eat is
| whole-kernel corn in any non-trivial quantity. It actually
| clogs me up. Oddly, popcorn is perfectly fine, as are corn
| tortillas and the like. It's happened to me twice. The first
| time I went to the ER and said I thought I had an obstructed
| bowel, and the admitting nurse said "can't be, if that were
| the case, you wouldn't be able to walk in yourself". I think
| that gives some perspective about what kinds of pain you can
| get used to. Second time it happened, I didn't bother, since
| there turned out to be nothing the ER docs could do other
| than monitor me. I just let it work itself out over the
| course of a couple days.
| semi-extrinsic wrote:
| The "your mileage will vary" part is definitely true, as
| well as the "incredible what kinds of pain you can get used
| to". I had 30 cm of my upper intestine removed 12 years
| ago. Doctors said it was so constricted you couldn't pass a
| pencil through, but I was still managing to ski double
| black diamonds two weeks before surgery.
|
| When it comes to fiber in particular, I think what can
| confuse people is the difference between water soluble
| fibers like oatmeal, and extremely insoluble "macrofibers"
| like raw green asparagus, leafy greens, orange pith etc.
| The former is OK for some, the latter is no-go for everyone
| AFAIU.
|
| Another curveball is nearly underbaked dough, like you'll
| find in a lot of commercial bread and rolls, even if it has
| zero fiber. If you can knead it back into dough with your
| hands, it might just form a nice lump in your gut as well.
|
| I have the same thing as you with corn, and also with nuts
| unless eaten with lots of liquids. I think it goes back to
| the possibility of forming tough paste in the gut.
| Workaccount2 wrote:
| Too many doctors erroneously just go along with "If the [front
| line] tests show nothing, it is nothing", such a shame.
| loudmax wrote:
| I do want to offer a limited defense of the medical community's
| "lack of open-mindedness". By the nature of their job, their
| work is inherently life risking. Most of us working in IT can
| afford to make experiments that doctor's cannot afford. I may
| be willing to try some unconventional approaches if the cost of
| error is an application crash and nuisance to the end user. If
| the cost of error is death of the user, I'm going to be far
| more conservative.
|
| When a patient dies, society will treat a doctor very
| differently if it's perceived that the doctor was being
| unorthodox compared to too cautious. This doesn't mean that too
| cautious doesn't also cost lives. It's just really difficult to
| balance when the stakes are so high.
|
| Anyway, good on you for taking ownership of your own health,
| and thank you for sharing your experience. I hope you continue
| to get better.
| abecedarius wrote:
| I'd respect this defense of medicine if medicine had resisted
| the U.S. dietary guidelines, which started as pseudoscience
| chosen by politics in the 1970s. Instead of being
| conservative about evidence and risks, the profession mostly
| was conservative about questioning that imposed consensus.
| dghughes wrote:
| I recall on an ask reddit a group of gastroenterologists were
| answering questions. One thing that stood out was they said
| "let your stomach rumble it's a necessary part of gut health".
|
| Fasting would help initiate that, but I think so many people
| these days never stop eating long enough for their stomach to
| rumble.
| cjdell wrote:
| I have also read that our gut doesn't like being in constant
| operation. Our ancestors didn't have access to food 24/7 and
| it makes sense our bodies adapted to take advantage of this
| by entering a self-cleaning state during long periods without
| consumption.
| pants2 wrote:
| I'm convinced that dietary restrictions are extremely powerful
| for treating Crohn's and similar diseases, but patient
| adherence is so bafflingly low that the treatment may as well
| not exist in doctors' eyes.
|
| Just as an example of a more studied case, the probability that
| an overweight person reattains normal weight through diet and
| exercise is well under 1% [1]. Now consider that diets for
| Crohn's (like a water fast and strict elimination diet) are
| considerably more difficult to follow than a weight loss diet -
| it's no wonder that diet appears to be ineffective for most
| people.
|
| After a similar experience to yours I haven't had any foods
| with the 8 major allergens (and a few more select things) for
| over seven years, aside from a handful of accidents early on.
| That's not an easy diet to follow, but gets easier with time
| and experience.
|
| 1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4539812/
| wholinator2 wrote:
| What are the 8 major allergens you're avoiding? Do you avoid
| anything else?
| pants2 wrote:
| The 8 most common allergens as identified by the FD: milk,
| eggs, fish, Crustacean shellfish, tree nuts, peanuts,
| wheat, and soybeans. These are called out on all packaged
| foods, which makes it easier, though I'm OK with some
| derivatives like soy lecithin. I also avoid yeast (brewer's
| or baker's) and a few other small things like black pepper.
|
| I've been in remission for long enough that I could
| probably start eating a lot of these things again, but I
| have no desire to go through another Crohn's episode, so
| I'll probably continue to avoid these foods for the next
| 40-50 years (unless there's a miracle Crohn's cure in the
| meantime). After that, as I understand, a weakening immune
| system from old age makes Crohn's symptoms significantly
| less likely or severe.
| aeblyve wrote:
| Indeed. It is difficult to have good-faith conversations about
| this subject with others sometimes because trust in "The
| System" (as it were) is often a core of peoples' relating to
| society. Western medicine does have excellent treatments for
| problems like appendicitis (in my case...), but is very much
| lacking in the holism that prevents the issues to begin with.
|
| A quote from Ray Peat:
|
| >"Besides fasting, or chronic protein deficiency, the common
| causes of hypothyroidism are excessive stress or "aerobic"
| (i.e. anaerobic) exercise, and diets containing beans, lentils,
| nuts, unsaturated fats (including carotene), and undercooked
| broccoli, cauliflower, cabbage, and mustard greens. Many health
| conscious people become hypothyroid with a synergistic program
| of undercooked vegetables, legumes instead of animal proteins,
| oils instead of butter, carotene instead of vitamin A, and
| breathless exercise instead of stimulating life."
|
| We see that health-consciousness, when lead somewhere by
| ideology, is not in itself sufficient to make progress.
| lebuffon wrote:
| We have so many "bandaids" but very few cures these days. Perhaps
| AI systems will allow us to find root causes of these insidious
| diseases.
| munificent wrote:
| We have so many cures that we simply forget about many diseases
| entirely.
| jjk166 wrote:
| Depending on how they are counted there are between 10000 and
| 70,000 different human diseases, and treatments only exist
| for around 500 of them. Further, the overwhelming majority of
| these treatments are not cures, i.e. treatments that end
| medical conditions in an individual.
| spondylosaurus wrote:
| I mean, we have a pretty decent understanding of the causes and
| mechanisms behind Crohn's and colitis. The problem is that
| "your immune system is going nuts" is a hard problem to solve
| once it gets started, and the human immune system loves to go
| nuts on a moment's notice.
| wholinator2 wrote:
| Genuinely asking, do we? Like, we might understand the
| mechanism but do we actually understand the cause, the "why"
| behind the mechanism? It was my understanding that there's
| practically infinite variety in which foods cause symptoms
| for different people, and that the specifics of each were
| still largely unknown
| spondylosaurus wrote:
| Well, for one, foods aren't the only thing that affect
| symptoms. And a lot of food issues are related to (1) which
| parts of your GI tract are affected and (2) what's wrong
| with them. People with strictures usually need to eat low-
| fiber diets, for example, but people without structures can
| actually benefit from some fiber.
|
| The "why" is a little less clear, but it's likely a mix of
| genetic factors and environmental/infectious triggers. Plus
| good old-fashioned stress :)
| aeblyve wrote:
| Scientific-ideological blindness, the kind that benefits
| General Mills et al., is a significant limiter. AI will not
| change that, if anything, only reinforce it.
| ctrw wrote:
| We stopped people dying from easy things so now they die from
| hard things.
| hardware2win wrote:
| Is Crohn getting more and more common recently?
| Khelavaster wrote:
| This is NOT to halt chrohn's disease. This is to reduce side
| effects from primitive colon-removal surgery to treat Crohn'#
| symptoms.
| ibash wrote:
| That's not my reading. One of the main symptoms of crohns is
| inflammation that leads to scarring and then surgery to remove
| the scarred intestine.
|
| If this stops inflammation/ scarring that's a big part of it.
|
| Or to put it another way: you get scarring before surgery, too.
| The problem is that overtime there's only so much intestine you
| can remove.
| hinkley wrote:
| > Australia has among the highest incidence of Crohn's disease in
| the world
|
| We really need to look at supply chain and environmental factors.
| Centigonal wrote:
| IBDs like Crohn's and Ulcerative Colitis have increased in
| incidence (controlling for better diagnosis) as countries
| develop[1] [2]. People in developing countries have a lower
| rate of incidence, and if they move to developed countries, the
| incidence remains low. However, their children, born in
| developed countries, experience the higher rate of incidence.
| Something about being a child in a developed country increases
| your chance of developing an IBD
|
| Several theories have been proposed, including hygiene
| hypothesis, lack of fiber in the diet, and pollution, but
| finding causality has been hard. Worse yet, nobody knows what
| causes these illnesses.
|
| It's also interesting to note many food allergies have
| increased in prevalence in the last 30 years - although the
| causes for that might be different, they are both GI related
| auto-immune conditions.
|
| [1]
| https://www.gastrojournal.org/article/S0016-5085%2811%290016...
|
| [2]
| https://www.thelancet.com/cms/attachment/1bc07ee3-782c-4670-...
|
| [3] https://pubmed.ncbi.nlm.nih.gov/19917585/
| hanniabu wrote:
| It's all about the gut microbiome
| 1letterunixname wrote:
| I worked with someone at _big name university_ biomedical
| informatics department who found out only in their early 30 's by
| emergency health crisis that they had Crohn's. Perhaps with some
| people it requires an emergency for there to be clinical
| investigation, or epigenetic conditions silence some pathologies
| until there is a specific stressor or gene activation.
|
| I sure hope a CRISPR edit treatment comes along to permanently
| cure some of the serious Crohn subtypes.
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