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Consolidation of research on dietary treatment of Crohn's, some important background studies motivating a dietary approach.
- Thread starter theflightless
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My gastroenterologist has me on a semi-vegetarian diet, which is pretty much the opposite of SCD. I mostly live on carbohydrates.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/
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I've read that study a few times, it's easily the worst on a dietary treatment Crohn's, and near to being with the worst clinical study designs in general.
To have just started a course of immunotherapy or antibiotics is about the silliest time to simultaneously start a diet trying to isolate it as an influence, and then decide any changes are due to the diet.
It's called confounding.
I'm sure your physician is also keeping you on medication.
To have just started a course of immunotherapy or antibiotics is about the silliest time to simultaneously start a diet trying to isolate it as an influence, and then decide any changes are due to the diet.
It's called confounding.
I'm sure your physician is also keeping you on medication.
The way I read it, they were given three infusions of Infliximab in the hospital, but it was not continued on release. He says: We used mesalamine or sulfasalazine in the follow-up phase. Considering that the relapse-preventive effect of mesalamine or sulfasalazine is absent or modest at most, it is reasonable to conclude that the SVD protected patients from relapse but an omnivorous diet did not.
Most of the omnivores relapsed, 94% of the SVD patients were still in remission two years later.
Most of the omnivores relapsed, 94% of the SVD patients were still in remission two years later.
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After about 1 mo of metronidazole administration, it was switched to mesalamine 1.5 g/d or sulfasalazine 2 g/d.
You are correct about the infusions, however patients were continued on antibiotic therapy. (mesa and sulfa are cleaved in the intestines to release an antibiotic.) I think this bacterial purge is not deduced from being the source of benefit.
in summary:
1 person left for another hospital, 1 bailed on the study, 1 smoker was excluded at the P.I.'s discretion, 5 cases recently resectioned included in the study(a condition that is frequently followed by years of remission),
13/22 at initial onset of disease(a condition that is more intermittent and milder than mid- and late-stage crohn's). All on antibiotics.
So pretty terrible. I'd say 17/22 were in a state to do well during the term of two years on an American diet, and 2 of the subjects departed for reasons that could reflect deteriorating health or faith in the study. So, given that 19/22 are pretty terrible, the whole thing is pretty terrible. I recollected what bothered me about the study incorrectly.
The authors say the relapse prevention of the allowed drugs is negligible. Sulfasalazine is prescribed now for Crohn's. Even the 3 data points that aren't absolutely a joke, those 3 data points are still confounded by the antibiotic properties of sulfa/mesa. I don't know the authors are being purposefully sloppy, but they are at least being obtuse.
You are correct about the infusions, however patients were continued on antibiotic therapy. (mesa and sulfa are cleaved in the intestines to release an antibiotic.) I think this bacterial purge is not deduced from being the source of benefit.
in summary:
1 person left for another hospital, 1 bailed on the study, 1 smoker was excluded at the P.I.'s discretion, 5 cases recently resectioned included in the study(a condition that is frequently followed by years of remission),
13/22 at initial onset of disease(a condition that is more intermittent and milder than mid- and late-stage crohn's). All on antibiotics.
So pretty terrible. I'd say 17/22 were in a state to do well during the term of two years on an American diet, and 2 of the subjects departed for reasons that could reflect deteriorating health or faith in the study. So, given that 19/22 are pretty terrible, the whole thing is pretty terrible. I recollected what bothered me about the study incorrectly.
The authors say the relapse prevention of the allowed drugs is negligible. Sulfasalazine is prescribed now for Crohn's. Even the 3 data points that aren't absolutely a joke, those 3 data points are still confounded by the antibiotic properties of sulfa/mesa. I don't know the authors are being purposefully sloppy, but they are at least being obtuse.
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@Tuff May I ask if your physician is also keeping you on medication, or if you are just on the diet?
I have severe fistulizing Crohn's, so of course I'm also on medications. Problem is, they work for a few years, and then I relapse again. I don't get one or two fistulas, I get a bunch of them, so surgery is not an option unless I want my large bowel and rectum removed.
As to SCD, there are no major completed clinical trials, but there are several taking place right now. It will be interesting to see. Personally, meat just kills me.
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I have followed different variations of SCD for about ten years now, I wouldn't say all ideas apply to all people but certainly these concepts have helped my construct a diet that helps keep many symptoms suppressed.
I have found a low sugar or low disaccharide lactose/sucrose diet helps immensely, but some foods that are restricted on SCD have some of the best form of fiber like resistant starches. Well cooked pinto beans mixed into refried beans have been very helpful. I also eat wheat and oats but some people may have more issues with those then others. Corn and rice i cannot digest well at all though as well as some vegetables.
I have found a low sugar or low disaccharide lactose/sucrose diet helps immensely, but some foods that are restricted on SCD have some of the best form of fiber like resistant starches. Well cooked pinto beans mixed into refried beans have been very helpful. I also eat wheat and oats but some people may have more issues with those then others. Corn and rice i cannot digest well at all though as well as some vegetables.
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I think it is at least cheap and worth it to attempt seriously, for everybody with Crohn's, on an individual basis.
@Tuff,
as to severe fistulizing Crohn's having you also on medication, it hasn't been shown that severity prevents the diet from working and there is no reason at all to think that, as the CDAI scores and hematocrit of some of the trial patients qualify them as "severe". It also shouldn't be fistulizing if you're on a diet that is inducing remission.
Additionally, if your doctor is having you hedge your bets with both an unsupported diet and medication, they're not doing a good job ruling things out. The "loosing every arrow in the quiver" approach, long-term, avoids developing a useful(deductive) health care record that allows insight into disease management.
Finally, no major clinical trials?
Again, please read the studies listed at https://crohnsforyouandme.wordpress.com/nothing-like-getting-smart-literally-saving-you/
Please review the number of people in these trials, several are 30-40 people.
@Wildbill,
As to resistant starches being the best form of fiber, why do you think that? For Crohn's patients, they are very unhealthy. Vegetable fiber from peppers, spinach - cellulose, in general - can perform the exact same task mechanically without offering carbohydrates to the intestinal microbiome.
@Tuff,
as to severe fistulizing Crohn's having you also on medication, it hasn't been shown that severity prevents the diet from working and there is no reason at all to think that, as the CDAI scores and hematocrit of some of the trial patients qualify them as "severe". It also shouldn't be fistulizing if you're on a diet that is inducing remission.
Additionally, if your doctor is having you hedge your bets with both an unsupported diet and medication, they're not doing a good job ruling things out. The "loosing every arrow in the quiver" approach, long-term, avoids developing a useful(deductive) health care record that allows insight into disease management.
Finally, no major clinical trials?
Again, please read the studies listed at https://crohnsforyouandme.wordpress.com/nothing-like-getting-smart-literally-saving-you/
Please review the number of people in these trials, several are 30-40 people.
@Wildbill,
As to resistant starches being the best form of fiber, why do you think that? For Crohn's patients, they are very unhealthy. Vegetable fiber from peppers, spinach - cellulose, in general - can perform the exact same task mechanically without offering carbohydrates to the intestinal microbiome.
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Well I cant say that with a high degree of certainty, but to be more accurate, refried beans make my bowel movements more regular, larger and softer. exactly why this is, i don't know, but it is higher in resistant starch then whole grains and any other food so that is one good theory. It has alot of protein and potassium, so it's nutritionally dense.
But since the bacteria in the microbiome is largely responsible for fermenting these fiber type substances, anyone with a damaged microbiome could react badly to this.
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short read, empirical.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315379/
There are a lot of bacteriome sequencing studies that dedicate themselves to demonstrating that there is a largely reduced bacterial diversity in Crohn's patients, and that they are very lacking fermentative bacteria and very abundant in carbohydrate eaters. I would link them all to you but I do not have them on hand and am not going to dig around for them. It should be somewhat easy to verify for yourself(not like one minute easy, but a couple minutes easy).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315379/
There are a lot of bacteriome sequencing studies that dedicate themselves to demonstrating that there is a largely reduced bacterial diversity in Crohn's patients, and that they are very lacking fermentative bacteria and very abundant in carbohydrate eaters. I would link them all to you but I do not have them on hand and am not going to dig around for them. It should be somewhat easy to verify for yourself(not like one minute easy, but a couple minutes easy).
Beans are a soluble fiber. Soluble fiber is "soluble" in water. ... Good sources of soluble fiber include oats and oatmeal, legumes (peas, beans, lentils), barley, fruits and vegetables (especially oranges, apples and carrots).
Soluble fiber absorbs water and turns into a gel, making stool larger and softer. It works for diarrhea and constipation. I take a fiber supplement made of chicory root (endive). I also love curried lentil soup, but it gives me gas, so I'm thinking of eating it with a dietary enzyme.
I put this in the research section the other day, but in case you do not read there.
Very odd finding, relapse caused by greens. Too bad they dont say if raw cooked or what kind.
A suspected mechanism is fiber getting stuck in spots causing bacterial
overgrowth,which starts an immune response.
oldmike
https://gut.bmj.com/content/gutjnl/32/6/702.full.pdf
Very odd finding, relapse caused by greens. Too bad they dont say if raw cooked or what kind.
A suspected mechanism is fiber getting stuck in spots causing bacterial
overgrowth,which starts an immune response.
oldmike
https://gut.bmj.com/content/gutjnl/32/6/702.full.pdf
They did say what kind.
"Vegetables were then added (Brussels sprouts, carrots, cauliflower, onions, and green beans)".
"These caused a prompt relapse of symptoms. It should be remembered that the patient had multiple tight small bowel strictures."
I added fiber to my diet slowly. And this happened to just one person in the study.
"Vegetables were then added (Brussels sprouts, carrots, cauliflower, onions, and green beans)".
"These caused a prompt relapse of symptoms. It should be remembered that the patient had multiple tight small bowel strictures."
I added fiber to my diet slowly. And this happened to just one person in the study.
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Theflightless
how long have you had Crohns?
How long have you used SCD ?
What other meds did you use besides or inaddition to SCD ?
We’re your last scopes /imaging on scd “clean “?
how long have you had Crohns?
How long have you used SCD ?
What other meds did you use besides or inaddition to SCD ?
We’re your last scopes /imaging on scd “clean “?
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@ mf15 It's interesting that one person had that occur. It could be indicative of some fiber-metabolizing powers of their g.i. tract that are rare in Crohn's patients, i.e. specific microbiota.
as for the trial group with a protein->peptide dietary plan-
The ill effects of a protein-> peptide diet change are interesting because some singular peptides can be effectively transported and metabolized by bacteria, and the region in the G.I. tract in which single peptides as part of a polypeptide are made available to gut bacteria is different from the region in which single peptides that were ingested that way are available to gut bacteria. Combined with a lack of the oppositely-ordered regime not showing a strong ill effect, it could be demonstrating either a diet-influenced permanent(or at least relatively long-term) shift downstream (by peptides-> protein)(of bacteria which can utilize peptides) in tandem with the depletion of bacteria that utilize polypeptides, which could be beneficial for the reasons of the host G.i. having greater time to absorb nutrients, or solely a selection against the bacteria that utilize polypeptides. I think knowing the location of inflammation in addition to degree across these courses would have been invaluable.
This is really interesting, thank you for bringing it to my attention. I had not read it.
off the cuff, I would find it interesting to investigate a brief course(4 weeks) of a peptide-only diet in addition to the regulations of the SCD before reintroducing whole proteins in patients who don't respond within a week to absolutely following the SCD. If I could get away with it, I'd also want a weekly scope to observe the location of inflammation.
edit:
I really don't like to talk about myself or particularly use my own case as a study, but I'll share because I've been asked by a mod.
I've had moderate to severe Crohn's for 8 years. My flares are pretty bad, consisting of intense pain in my upper back, abdomen, hips and calves, swelling of my sacroilliac joints, constipation, bloating, and the very difficult passing of tons of water, tiny, hard jet-black stools made that way by coagulated blood, and undigested fat droplets. The worst I can get is to spend days solely passing what look like iron filings, i.e. blood aggregates.
My last scope was *almost* clean after following the SCD for about a year. I went off of Remicade(which I was on for 6 years with pretty much total resolution of symptoms and bloodwork - near the end, started to get flares breaking through) because of concern that I had developed neuropathy in my hands(now known to be arthritis). Across that year(on no medication but on the scd diet), I had no symptoms excepting continued arthritis in both hands and elbows. I had normalized bloodwork. My scope showed a thin band of mild inflammation at the terminal ileum. I can't explain that band, it still haunts me - I believe this was likely due to mistakes made in following the diet the week before that scope(people put polysaccharides in everything now, including hot dogs), however I had grown so comfortably symptom-free I had not been tracking or specifying my diet nearly as closely as I had been for the first two months or so.
Notable that during the year on the SCD, I felt better than I have in my life. I was physically well, and from being able to guarantee my lack of symptoms for any upcoming activity, mentally pretty great too(both wellnesses excepting being troubled by arthritis). I finished my senior year as an undergraduate studying bioinformatics and working in a lab. I hit new weightlifting and cardio benchmarks. I was on no medication.
I tested negatively for neuropathy.
I was then put on a course of steroids, which did not help my hands. It is most likely that bacteria have infiltrated the joint synovia and are now subsisting off my blood glucose. I am now on Entyvio, which also has not helped my hands(implying either that the bacteria in my synovia are stable(unlikely in an immunonormative person), very hardy(an infectious bacteria), or getting into my system through some means other than crossing the epithelium) despite resolving all of my other symptoms and bloodwork while following a regular diet(though devoid of red meat and trans fats). For whatever reason, the arthritis is very sticky. It is notable that studies have found the course of most peripheral IBD-arthritis to only last 6 months-2 years. I hope to be one of the majority of cases in this regard.
I very recently saw a new g.i. due to my old one being out of cards to play against my arthritis. They considered vitamin-b12 deficiency a possible culprit, as it is necessary for proper immune reactivity and infrequently but not vanishingly deficient in people with Crohn's. I've been put on shots. I've only had one shot so far, and am waiting for the delivery of the rest of my shots. It's too early to judge efficacy.
as for the trial group with a protein->peptide dietary plan-
The ill effects of a protein-> peptide diet change are interesting because some singular peptides can be effectively transported and metabolized by bacteria, and the region in the G.I. tract in which single peptides as part of a polypeptide are made available to gut bacteria is different from the region in which single peptides that were ingested that way are available to gut bacteria. Combined with a lack of the oppositely-ordered regime not showing a strong ill effect, it could be demonstrating either a diet-influenced permanent(or at least relatively long-term) shift downstream (by peptides-> protein)(of bacteria which can utilize peptides) in tandem with the depletion of bacteria that utilize polypeptides, which could be beneficial for the reasons of the host G.i. having greater time to absorb nutrients, or solely a selection against the bacteria that utilize polypeptides. I think knowing the location of inflammation in addition to degree across these courses would have been invaluable.
This is really interesting, thank you for bringing it to my attention. I had not read it.
off the cuff, I would find it interesting to investigate a brief course(4 weeks) of a peptide-only diet in addition to the regulations of the SCD before reintroducing whole proteins in patients who don't respond within a week to absolutely following the SCD. If I could get away with it, I'd also want a weekly scope to observe the location of inflammation.
edit:
I really don't like to talk about myself or particularly use my own case as a study, but I'll share because I've been asked by a mod.
I've had moderate to severe Crohn's for 8 years. My flares are pretty bad, consisting of intense pain in my upper back, abdomen, hips and calves, swelling of my sacroilliac joints, constipation, bloating, and the very difficult passing of tons of water, tiny, hard jet-black stools made that way by coagulated blood, and undigested fat droplets. The worst I can get is to spend days solely passing what look like iron filings, i.e. blood aggregates.
My last scope was *almost* clean after following the SCD for about a year. I went off of Remicade(which I was on for 6 years with pretty much total resolution of symptoms and bloodwork - near the end, started to get flares breaking through) because of concern that I had developed neuropathy in my hands(now known to be arthritis). Across that year(on no medication but on the scd diet), I had no symptoms excepting continued arthritis in both hands and elbows. I had normalized bloodwork. My scope showed a thin band of mild inflammation at the terminal ileum. I can't explain that band, it still haunts me - I believe this was likely due to mistakes made in following the diet the week before that scope(people put polysaccharides in everything now, including hot dogs), however I had grown so comfortably symptom-free I had not been tracking or specifying my diet nearly as closely as I had been for the first two months or so.
Notable that during the year on the SCD, I felt better than I have in my life. I was physically well, and from being able to guarantee my lack of symptoms for any upcoming activity, mentally pretty great too(both wellnesses excepting being troubled by arthritis). I finished my senior year as an undergraduate studying bioinformatics and working in a lab. I hit new weightlifting and cardio benchmarks. I was on no medication.
I tested negatively for neuropathy.
I was then put on a course of steroids, which did not help my hands. It is most likely that bacteria have infiltrated the joint synovia and are now subsisting off my blood glucose. I am now on Entyvio, which also has not helped my hands(implying either that the bacteria in my synovia are stable(unlikely in an immunonormative person), very hardy(an infectious bacteria), or getting into my system through some means other than crossing the epithelium) despite resolving all of my other symptoms and bloodwork while following a regular diet(though devoid of red meat and trans fats). For whatever reason, the arthritis is very sticky. It is notable that studies have found the course of most peripheral IBD-arthritis to only last 6 months-2 years. I hope to be one of the majority of cases in this regard.
I very recently saw a new g.i. due to my old one being out of cards to play against my arthritis. They considered vitamin-b12 deficiency a possible culprit, as it is necessary for proper immune reactivity and infrequently but not vanishingly deficient in people with Crohn's. I've been put on shots. I've only had one shot so far, and am waiting for the delivery of the rest of my shots. It's too early to judge efficacy.
Last edited:
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