8 ms·

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 resear

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.

bladegash 5y ago
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).
- jcrben 5y ago
  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/ https://pubmed.ncbi.nlm.nih.gov/32412598/
  - bladegash 5y ago
    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!
  - nikkwong 5y ago
    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?
    - jcrben 5y ago
      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/ https://pubmed.ncbi.nlm.nih.gov/30550821/
      - nikkwong 5y ago
        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?
        jcrben 5y ago
        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-diet 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.
- fnord77 5y ago
  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
  - laurent92 5y ago
    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.
    - fnord77 5y ago
      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.
      - hollerith 5y ago
        Most (all?) so-called "decaffinated" coffee has a decent amount of caffeine.
        fnord77 5y ago
        maybe like 1/10th or less. not enough to trigger me
  - bladegash 5y ago
    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.
vimy 5y ago
Fecal transplants also have put people in remission.
- GhettoComputers 5y ago
  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-obese-after-fecal-transplant-overweight-donor/ 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.
  - m0lecules 5y ago
    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"
    - GhettoComputers 5y ago
      Did you read my post? > 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.
  - rendang 5y ago
    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.
animal_spirits 5y ago
The paper mentions that we are now regularly exposed to bacteria that can grow in cold environments. That's fascinating
- m0lecules 5y ago
  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.
  - lostapathy 5y ago
    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.
  - aitchnyu 5y ago
    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?
- deleted 5y ago
  [deleted]
- pvaldes 5y ago
  Or maybe since people has refrigerator, they eat a ton of stuff wrapped in plastics for weeks
PaulKeeble 5y ago
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.
- thevagrant 5y ago
  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.
  - kortilla 5y ago
    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?
    - buildsjets 5y ago
      Garlic is not a spice. It is an allium, in the same family as onions and leeks.
      - margalabargala 5y ago
throwawaycities 5y ago
> 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.
- deleted 5y ago
  [deleted]
hanniabu 5y ago
Any chance you know why store kefir doesn't do as well?
Phurist 5y ago
I would advise having a look at: https://www.youtube.com/watch?app=desktop&v=O53D9x_SO4Q https://www.youtube.com/watch?app=desktop&v=O53D9x_SO4Q for some up-to-date info.

bladegash 5y ago

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).

jcrben 5y ago
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/ https://pubmed.ncbi.nlm.nih.gov/32412598/
- bladegash 5y ago
  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!
- nikkwong 5y ago
  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?
  - jcrben 5y ago
    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/ https://pubmed.ncbi.nlm.nih.gov/30550821/
    - nikkwong 5y ago
      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?
      - jcrben 5y ago
        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-diet 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.
fnord77 5y ago
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
- laurent92 5y ago
  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.
  - fnord77 5y ago
    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.
    - hollerith 5y ago
      Most (all?) so-called "decaffinated" coffee has a decent amount of caffeine.
      - fnord77 5y ago
        maybe like 1/10th or less. not enough to trigger me
- bladegash 5y ago
  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.

vimy 5y ago

Fecal transplants also have put people in remission.

GhettoComputers 5y ago
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-obese-after-fecal-transplant-overweight-donor/ 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.
- m0lecules 5y ago
  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"
  - GhettoComputers 5y ago
    Did you read my post? > 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.
- rendang 5y ago
  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.

animal_spirits 5y ago

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

m0lecules 5y ago
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.
- lostapathy 5y ago
  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.
- aitchnyu 5y ago
  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?
deleted 5y ago
[deleted]
pvaldes 5y ago
Or maybe since people has refrigerator, they eat a ton of stuff wrapped in plastics for weeks

PaulKeeble 5y ago

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.

thevagrant 5y ago
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.
- kortilla 5y ago
  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?
  - buildsjets 5y ago
    Garlic is not a spice. It is an allium, in the same family as onions and leeks.
    - margalabargala 5y ago

throwawaycities 5y ago

> 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.

deleted 5y ago
[deleted]

hanniabu 5y ago

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

Phurist 5y ago

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