• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Dietary manipulation of the gut microbiome in inflammatory bowel disease patients: Pilot study

none of these diets make sense to me....being honest...i know its not a simple thing or that any one program could cure the world but it seems like most cases with science and each angle has its degree of truth......

but you dont really see it combined or expressed in this collective way........just fragmented plans that all make some portion of sense after you dig to see what they are based on...

i am thrilled to see all the recent research anyway......it is very encouraging.

thank you for sharing the link ;P
 
none of these diets make sense to me....being honest...i know its not a simple thing or that any one program could cure the world but it seems like most cases with science and each angle has its degree of truth......

but you dont really see it combined or expressed in this collective way........just fragmented plans that all make some portion of sense after you dig to see what they are based on...

i am thrilled to see all the recent research anyway......it is very encouraging.

thank you for sharing the link ;P
It really is bonkers. We are on CDED and I think the spirit of it is some solid foods + liquid nutrition. CDED also enables Modulen sales but you can use other brands of drinks to get the same PEN effects. CDED is heavy on the chicken breasts and eggs so if you follow that spirit then you can carve out a a diet that is shy of red meat. It's extremely restrictive and given how clean it is, I can't see how it's bad for Crohn's. However, CDED allows unrestricted amount of rice so if rice "hurts" then CDED is out of the question.

SCD allows you to eat so much more but it cuts out grains completely (opposite of CDED) so you gain some and you lose some.

In conclusion, we don't know anything about anything so it's whatevs.
 
the chicken and eggs i rely on alot myself....makes sense....i feel confused some parts tho...or like why some things arent mentioned.

like coconut milk/oil? is that being slated somewhere i missed?

or with the dairy i see common......which was a big concern with me as i have been a big dairy fan, so asked my doctor right away check my lactose tolerance etc anything you can please...

he tells me if you are intolerant(lacking enzymes for digestion), most all people will know this by age 5.......then watching me connect the dots...ohhhhh, the chrons then.....lol...

it is a fodmap, fair enough.......but more evidence seem to suggest the a1 beta casein as the chief antagonizer.....you know, that protein that mutated into existence by us engineering cattle into biomechanical organisms.........but its hardly mentioned just over hype on lactose it seems...

or grass fed butter.....i already know there is no butyric acid in canola......and that canola is a heavy GMO etc, but dont consider that either just the type of fat chain or what idk.......

or the refined sugar i am trying hard lol.......i know its an element in oral rehydration solutions, so perhaps by that they consider it not harmful?
instead of replacing with fruits, which it seems to be heavily supported regardless of fodmaps consideration.

rice used to give me issues.....then i learned i was making it wrong my whole life, so very happy to get that one back.......or even some facts like jasmine vs basmati being nearly double(!) glycemic index.......could cause a couple problems right!

i am only alarmed some by the lack of distinctions and explanations i suppose, then of course, the straight out profiteering by less scientific groups.

i certainly feel the empathy anyway.....from not being able to eat much at all....or you find one thing ok yes i can work with this, then the next day it triggers you and cant eat for 2 days.....seems like it makes no sense......it is amazing tho for any remission as im getting a chance to learn again like new perspectives of actual sensitivities...feels like a fighting chance, but i still have these lingering bias/fears.

going hardcore against lectins and/or fodmaps, i think will be unhealthy for me, but considering them in balance i hope can go a long way....this fruit instead of that, sure ok...cutting out corn/oats or what has highest concentrations hardest to purge.....or if you must have an apple bake it etc.......i guess i am a sort of rare spot in my healing...trying to act like i am in a hardcore flare, but also trying to be logical/practical idk...
 
eggs is another good example actually, i know its common allergen....but if we are thinking about lectins, it makes a difference what the hens are fed....took me some time to look close enough and see that many of these "organic, free range" are fed a hefty bit of corn meal....and only one i found locally thats fed sprouted barley...

but if its suggested to eat eggs, it cant really be stated like this type or such, which may possibly be the biggest reasons a chrons/leaky gut person might have problems with them.....because that is too speculative or? i think there is more data to pull some of these theories together better just not so popularized or centralized really confuses things well.

regards
 
eggs is another good example actually, i know its common allergen....but if we are thinking about lectins, it makes a difference what the hens are fed....took me some time to look close enough and see that many of these "organic, free range" are fed a hefty bit of corn meal....and only one i found locally thats fed sprouted barley...

but if its suggested to eat eggs, it cant really be stated like this type or such, which may possibly be the biggest reasons a chrons/leaky gut person might have problems with them.....because that is too speculative or? i think there is more data to pull some of these theories together better just not so popularized or centralized really confuses things well.

regards
It definitely is true that the daily eggs are a bit excessive (CDED). I think when they first came up with the diet they were trying to find a few ingredients that were readily available hence the chicken breasts, eggs, potatoes, rice, apples and bananas. There is quite a bit of research done on CDED and I do believe the PEN part of the CDED is helpful and makes sense to me. I even think (once you understand the core philosophy of CDED) you can come up with a similar plan with ingredients that work for you... high protein, low fiber, resistant starch + drinks and do that for a while to see if the inflammation goes down. Then slowly add other food back.

@westernbuddy was doing PEN for a decade with no biologic. (y)🏆
 
eggs can be good enough in alt flour muffins and pancakes, to help get some of that sort of nutrition in there thats easy to rotate flours....now that i finally figured out this grain free situation regarding the hens is reassuring.. but it would be nice to not have to dig so hard anyway...

i am doing basically this form of approach, but restricting more fodmaps and being lectin conscious about ingredients and prep...

then leaning to millet alot that i guess isnt mentioned because fiber? or for not being common perhaps...seems like a good one with many variety to alternate...

if i have some tea i will put a drop of maple in there...or some baking things sort of need that slight bit.......otherwise im excluding sugars as well.

regarding this topic anyway......microbes etc..

i think alot is said toward the angle of excluding "bad things"......things that arent natural or unprocessed, minding the sugar and i guess fats if those are a problem....when i removed my last couple cheat things i noticed pretty well right away a positive change.....also eating smaller meals more often if possible at all i think goes a long way. even for diabetic and such you know they say it...

supplemental wise as well its much to push things in a good direction and help maintain...for now i favor these i found about.

---pre/post biotic
epicor
tributryin
um a little wheat dextrin, in my tea, which i dont think resembles wheat really? seems to help anyway..
on/off with the larch arabinogalactins atm....not sure its good or bad with me..

---cultures
sac B
bifido longum
lactos/bacillus complex


i would be interested to hear more about westernbuddy as well.....it seems the surgeries i had they want to push me in this moderate to severe category....even tho im fairly certain they removed possibly actually all diseased tissue......i know it can come back but that is where we get into these sort of topics like this.....microbe balances and what actually causes flares.....

my GI doc says there is a nobel prize waiting for me once i sort that so ok i know but i cant imagine this sort of dietary consideration would not make a difference, even if on biologics...
 
Last edited:
Mine is all down to a drink called Elemental 028.

Within 48 hours of taking it my life was changed for good.

Then simply avoid trigger foods as much as possible.
 
thank you for sharing your details with me.

i am stateside for now, checked out the ingredient list on that tho......i think i may never understand how its possible to put such effort into making such a needed and nonexisting product, then throwing sucralose in it! why! on top of the glucose and refined sugar too
....they sure lay it on heavy with the aminos tho is interesting...

which inspired me to order some coconut aminos....

still contemplating this CDED as well.....like the rice, ok go crazy on rice is saying one thing.........but if we say, use basmati... soak, pressure cook, cool, re-cook......and use MIN 50% GRAIN FREE bone broth, and coconut aminos.............thats a huge difference right? i managed to get there eventually, but they could make it easier im saying. most people new to this like me already have an overwhelming bit of info slamming to them......so idk why, maybe bone broth hasnt been fully "proven" or something
 
I have read bone broth works great, I have never tried it though.

Yes indeed the drinks I take do have some stuff in them that's not great, it's a strange one.

But I could literally not walk I had that much inflamation, then within 48 hours of taking them I was feeling better than I had for many years,

Rice is great for me too, some people can't eat it though.

Food makes the disease ever more confusing, what one person can eat another can't.

And sometimes you can eat that food if its cooked differently.

As an example a rare red steak may make a flair, and a well done cooked well steak may make no issues.


My theory is its something to do with bacteria. The drinks your bowl can absorb them and at last you get nutrition, this then give the body more power to fight the disease. Plus your not eating food with tons of bacteria.

Have you got a theory on it yet ?
 
EEN is weird but it works. The drinks are loaded with illegal ingredients but somehow they help inflammation to down for the majority of people.

@wildbill_52280 is all about the broth. He also ditched the med and has his own proprietary diet figured out. Amazing as well.
 
Elemental 028 is the only one I have tried, it's made for crohns.

Just had one 5 mins ago.

I can inform to anybody that has not had it, or has not got ibd.

These drinks feel strange, imagine I can't drink wine, or beer, beer would flair me up, I wouldn't be able to drink or eat for 24h after 1 can.

But this Elemental drink, it feels magic, they feel soothing nourishing, like if you have some inflamation, as soon as you drink the Elemental drink about ten mins after it feels like you have put a nice cold band aid on the crohns, feel more energy, stomach feels cool soft and smooth.


They stopped working for me at the ten year mark, on pen and food no meds, right now there working again, I don't know what went on. And I don't know why they stopped working.

Crohns is a progressive disease and it does its best to find its way around all treatment options.


I think It's almost impossible to spend a human lifespan here and have the perfect diet, perfect stress and emotion levels, perfect work life balance to maintain it.

And biologics these stop working for the unknown also.

We need safer more effective more reliable meds. I'm now in my 3rd decade of crohns and hope all us crohns patients will soon get the better treatment we all need.
 
Elemental 028 is the only one I have tried, it's made for crohns.

Just had one 5 mins ago.

I can inform to anybody that has not had it or has not got ibd.

These drinks feel strange, imagine I can't drink wine, or beer, beer would flair me up I wouldn't be able to drink or eat for 24h after 1 can.

But this Elemental drink, it feels magic, they feel soothing nourishing, like if you have some inflamatiion, as soon as you drink the Elemental drink about ten mins after feels like you have put a nice cold band aid on the crohns, feel more energy, stomach feels cool soft and smooth.


They stopped working for me at the ten year on pen and food no meds, right now there working again, I don't know what went on. And I don't know why they stopped working.

Crohns is a progressive disease and it does its best to find its way around all treatment options.


I think It's almost impossible to spend a human lifespan here and have the perfect diet, perfect stress and emotion levels, perfect work life balance to maintain it.

And biologics these stop working for the unknown also.

We need safer more effective more reliable meds. I'm now in my 3rd decade of crohns and hope all us crohns patients will soon get the better treatment we all need.
They are working again as in you are off of Stelera?

I am drinking one right now too! I believe Elemental 028 is called Neocate Splash in US? I bought a case for my son and he couldn't bare it so now I am drinking it. It's very difficult to not hate it at first but now I can down 3/4 of a chilled bottle without dragging my feet. I always think of you @westernbuddy when I see the carton on the floor. Haha
 
I'm not off Stelera, but on the other hand I have had only 3 doses so far.

Feels like I could not take another, but I'm going to have another.

I'm not certain the Stelara is doing anything, these drinks, I'm very certain are doing something however I feel the effects of them without doubt.

Splash, what flavour do you have, did you put it in the fridge ? I could mail you some of mine to try but I don't know about clearing customs, plus you need a secure supply in usa.

Orange flavour and cold is my technique, been drinking orange flavour day after day for years and years now.
 
I have read bone broth works great, I have never tried it though.

Yes indeed the drinks I take do have some stuff in them that's not great, it's a strange one.

But I could literally not walk I had that much inflamation, then within 48 hours of taking them I was feeling better than I had for many years,

Rice is great for me too, some people can't eat it though.

Food makes the disease ever more confusing, what one person can eat another can't.

And sometimes you can eat that food if its cooked differently.

As an example a rare red steak may make a flair, and a well done cooked well steak may make no issues.


My theory is its something to do with bacteria. The drinks your bowl can absorb them and at last you get nutrition, this then give the body more power to fight the disease. Plus your not eating food with tons of bacteria.

Have you got a theory on it yet ?
i know how that feels...happened to me 2 times, the last time tho i was basically sitting thru a woken fever dream, toe on the line, couldnt get even to the deli counter and back to my car anymore......but thinking in my twisted logic like if i can just increase my calorie intake that will fix me...i was not considering these nutritional drinks at that time and i think it could have made a huge difference for sure.....i went from 165lbs to 100 in about 4 months.....once i gained the weight back tho(over a busy panic 2 months), i read those labels.....got scared and stopped taking the boost drinks...

the first time it happened i seemed to pull myself out with oatmeal and supplements.....which, makes no sense to me really.....and also by now i feel even tho i was able to eat it and keep it down, it was doing perm damage so i dont eat it anymore....

im sure bacteria balance are important in this, and for us, i see its like "bad bacteria" will make this paranoid over reaction response much easier from our bodies too...which will increase inflammation, which seems will barrier absorption the most?

and that is where i get twisted up....because i look at products that are made all about absorption, then including inflammatory agents....i am working on a sort of transition thing for now anyway because i do have some concerns...

for one thing i feel dehydrated lately even tho im drinking water all day and input/output good....but i realize also even my gel multi vits, dont replace plant foods....so trying to be regular with this "fermented protein and greens" product.......then the supplements and whatever food i can squeeze in....

i am also trying to consider things like....ok i know i am going to eat this meal with more lectins than id prefer, so i should take lectin blockers with it like my NAG i take 2x per day anyway...

i focus lining health too by things like slippery elm, marshmallow, kiwi for mucin etc....but i realize it goes deeper than surface with this so yes very confusing where the lines are...
 
Last edited:
I'm not off Stelera, but on the other hand I have had only 3 doses so far.

Feels like I could not take another, but I'm going to have another.

I'm not certain the Stelara is doing anything, these drinks, I'm very certain are doing something however I feel the effects of them without doubt.

Splash, what flavour do you have, did you put it in the fridge ? I could mail you some of mine to try but I don't know about clearing customs, plus you need a secure supply in usa.

Orange flavour and cold is my technique, been drinking orange flavour day after day for years and years now.
Hopefully you can go back to your old routine very soon. 🙏

I have the vanilla flavor. Its pretty bad but I am getting used to it. Thanks for the offering! Too far, too expensive... I'll go look and see if the orange flavor is available. US seems limited on elemental. I think the dominant players are like PediaSure, Boost... the typical nutritional drinks.
 
Vanilla I can imagine that is not great.

I tired multiple flavours, and orange elemental was the one, @kiny takes the same drinks as me, would be great of Kiny could share what flavour too.

And regarding the nutrition, when your at that stage where your not getting enough and starting to get weaker and drained, this is the point where crohns takes advantage and starts to gain power over the body, bit by bit, the less nutrition you have the more weaker you become and the more powerful crohns gets.

Nutrition is key to keeping the disease from gaining power.
 
If that's the same as elemental 028 passion fruit I would take. Passion fruit is nice cold.

But I would also need 3-4 cartons per day.

Here I take sachets 100g orange sachets, cheaper and much more to drink.

So you have this in usa? 100g powder sachets to mix with water, orange flavour.
 
This is what I take, one a day works good, two a day and a good diet really good, but one a day works.

 
this is part what im trying to sub in as a sort of cleaned up version...idk


it does use stevia that im not thrilled for but at least thats not an e.coli antagonizer...



about the dehydration tho, i think i may just need to balance my sleep better.....i can tend to work long shifts then sleep half a day, feels like i need an IV or something or wake up just to drink something ;P
 
This is where I don't understand the ingredients enough, elemental 028 is made for crohns, and all these other brands, could have a simple thing in it that is not suited for crohns.

Elemental 028 does have anti inflammatory ingredients in it.
 

my little penguin

Moderator
Staff member
Oley foundation , your local childrens hospital etc…
Your Gi office can tell you
All will donate them to children with Gi issues or severe allergies who can’t afford them
 
This is where I don't understand the ingredients enough, elemental 028 is made for crohns, and all these other brands, could have a simple thing in it that is not suited for crohns.

Elemental 028 does have anti inflammatory ingredients in it.
right...its like these diet plans even.....its not so much they are meticulously perfect....but have some logical ideas worked into them that are field tested...
so im trying to sort of piece together the best bits....and leave out adverse elements...
of course sometimes it isnt apparent why a combo of things works and can come out to more than the total of the separated ingredients...

on the other hand tho......and, im not trying to slate this elemental im glad people have an option with it....but im just trying to understand whats behind it to get those sort of benefit in my more customized regimen..

seems the aminos and mct are big parts.....i am leaning pretty hard on the coconuts so bit more worried about too much saturated fats than lacking MCT....but in regards to absorption and aminos and this....i am in parts hoping that relying on techs like sprouting and fermentation help get things thru....

otherwise well cooked stews or this congee i soon plan to explore more....almond flour over almonds etc....just everything as pre-digested as possible seems to make sense...

you have a good point too about what is practical....i am freshly scared some so its easier to do these extra things...but im not sure what to do if i leave my house ;P
 
You would think it's possible to make a recipe for everyone to use at home, no high cost drinks, no bone broth.

I'm not sure if it's possible to buy the ingredients needed from a Walmart or Asda.

Could have a patient funded recipe, @propelacure @artheta @Mommabear could get involved with a couple of food science experts, retired or something from some big coporation.

The recipe or the ingredients could maybe even be sold and the profits used to pay future crohns research.
 
yes love it....just something more comprehensive.....with logics and options/alternatives better listed...

i dont have a ton of cash or anything here myself but in one part its just been figuring out actually what to put in the pantry...i kept buying things, then realizing it will more likely poison me and throwing it away before i even open it...only now starting to feel a couple solid staples in it i can build from...

it is really amazing actually tho, what you can get, even with a food card from amazon or online walmart.....it sucks cuz they are evil, but i dont know how else i would done even as well as i have so far....

bone broth, organic rice, millets, something around a dozen alt flours im rotating....

some parts can be simpler, but i also cant get to a grocery often so fresh veggies and fruits are a trick...i think it would be helpful anyway for options to people....like, if i can get a case of tomatoes and make a low lectin tomato sauce, i might eat it.....for now im in routine enough to just take or leave it, but if i wasnt, could be nice like some bladderwrack suggestion to balance it or something.....preparation tips etc......

the same with sprouting and fermenting.....im not quite set to try this more completely in my home kitchen just yet, but it would be nice to have things laid out like that......"here is an optimal people can work toward, if you cant do or source these things try these etc..."

i am leaning toward over caution with things like pressure cooking, but some of this data is actually out there.....just hard to find....like, which temperatures, how long for which foods etc........
mostly i see a dozen copy paste blogs trying to get clicks and cant even find the original sources they all pasted it from:rolleyes:
 
EEN is weird but it works. The drinks are loaded with illegal ingredients but somehow they help inflammation to down for the majority of people.

@wildbill_52280 is all about the broth. He also ditched the med and has his own proprietary diet figured out. Amazing as well.
I appreciate the mention asadmom , I'm more of a SCD/low fodmap person though;) I do make a broth, but i flavor my soup with it so I'm eating a lot of fiber from broccoli carrots and kale while avoiding corn, potatoes and beans.
 
Top