Role of diet in prevention versus treatment of Crohn’s disease and ulcerative colitis

[kiny]

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[kiny]

It is not surprising that the more aggressively a diet starts to mimic EN, the more successful remission become and the more they start to align with EN.

The more aggressively a diet removes fiber, mycotoxins, gluten, lactose and FODMAP, the more processed it becomes, but also the more it starts to mimic EN's remission rates.

Outside of EN, there is no evidence any diet leads to remission in crohn's disease. CD-Treat studies are weak. However, if you start closely aligning CD-Treat with EN, it should start to mimmic its remission rates.1486×2282

A possible caveat would be if EN purely exerts its anti-inflammatory properties through its liquid form. I don't think it does that however. It just so happens to be that if you highly process food, create very simple molecules through hydrolysis, highly process fat, you end up with a powdery substance, and with the addition of emulsifiers you can easily turned it into a stable liquid.

EN is extremely processed, as unnatural as it gets. But it is extremely successful in inducing remission, remission rates are 80%+ for crohn's disease, and easily 90%+ for exclusive ileal crohn's disease. Remission rates are far higher than any medication. The weak link is not EN, it is patient adherence.

The fact the media loves to go after food processing lately should be completely irrelevant for us. Highly processed EN, lacking any fiber, full of emulsifiers with calories coming from starch hydrolysis and MCT fats, leads to incredibly high remission rates. EN is a dietician's worst nightmare, and turns everything they have been taught upside down, but it greatly helps us crohn's disease patients, and that's all that matters.

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[Andersen007]

Thought I will share a recept experience of mine, once I have been doing this for longer time I will make a separate post about it. As some of you may know I have exclusively ileal disease without any medication, but EEN never worked for me, in fact it significantly worsened my symptoms, and I tried many brands. I was following an SCD-like diet that keeps me barely symptomatic, and monitor calpro regularly. Early this year calpro started rising again and I started getting symptoms too, so I decided to give another "EEN" a try - Compleat's chicken garden blend. It was sort of a Hail Mary attempt before agreeing to try a medication. To my surprise after a few days I was going to the toilet only 1-2x a day, was a completely different experience than all EEN-s I tried before. So I decided to try to replicate it at home - in the last 2 months, I am eating exclusively my homemade cream-soup / pudding consistency food, prepared exactly the same way every day, that essentially contains chicken breast, papaya, butternut squash, peanut butter, olive oil, and some other minor things, all blended together in a purée. In the last 2 months my stools have also firmed up and very consistently happen 1x a day. I dont have any other symptoms, and my calpro went down to 200-ish. I tried to deviate from it 1-2 weeks ago and I immediately got symptomatic again, although mildly, and still haven't gone back to the super solid stools again like I had before going a bit rogue. So very strange, given I miserably failed all these heavily processed, sometimes elemental shakes, that contain no fiber, and this one caused such a huge improvement. I was never really malnourished nor had any extra-intestinal manifestations so cant comment on those. But it would be great to understand wtf is going on, as my personal experience constantly contradicts most research.

 

[kiny]

The remission rate for ileal crohn's disease and EN is consistently high.

How to explain that 10% who don't go into remission. Studies on EN tend to measure mucosal healing at either 4, 8 or 12 weeks. That's a lot of weeks patients are not under direct supervision and there is no way to check if they are using EN or not. If one looks at studies regarding patient compliance, there are patients who aren't able to adhere to the EN diet. I assume most are honest about this and can promptly be excluded from the study results. But it just seems as reasonable to assume that not every patient was honest and at least some "cheated" but ended up in the results. The remission rates are higher for children and so is EN adherence.

That still leaves a group of people with active enteritis who did adhere to the diet but didn't go into remission on EN, it would be nice if research started looking at what might make this group different.

 

[Andersen007]

Agree, that would be great. Especially that nutrition has A LOT of effect on my inflammation, both positively and negatively. And even those who "fail" EEN when I do find some people here and there online, they tend to report that it just didn't work, not that it made them feel much much worse. Pretty glad I found something that tends to help me a lot though. At least regarding homemade blended nutrition causing significant positive impact, I do not seem to be alone. This one used a completely different formula, and not that many people, still very impressive: https://onlinelibrary.wiley.com/doi...MsfHxTXt3LNQTroJkufix53YIZlYNTMCIezH6dW4z07Ch

Goes against some of your ideas on why EN seems to help people though.

 

[kiny]

This one used a completely different formula, and not that many people, still very impressive: https://onlinelibrary.wiley.com/doi...MsfHxTXt3LNQTroJkufix53YIZlYNTMCIezH6dW4z07Ch

"The macro- and micronutrient composition of common polymeric formulas used for EEN was used to guide the components of the smoothie."

A "smoothie" with similar nutrients as EN should produce the same results. This does not seem unreasonable or surprising. The closer CD-Treat mimics EN, the more closely remission rates will mimic EN.

Lecithin is used as an emulsifier in EN, the study excluded lecithin, but did not say which substitute they used instead. Simply referring to "commercial" products. Making EN at home is likely not that simple if one doesn't understand the function of some of the components in EN. Hydrolised starch produces very different substances depending on the length of the hydrolysis process. "Glucose syrup" and "maltodextrin" are generally ill-defined. In some countries maltodextrin, glucose syrups are well defined, and all data on DE-value and their chemical properties is readily available, but in many others they are used interchangeably without oversight. Mimicking EN with commercially available ingredients is not that straightforward as the study makes it out to be.

 

[kiny]

The study added a "daily Freedy multivitamin" to create the "smoothie".

It should be noted that even long term use of "professional" EN like Modulen and 028 where every ingredient is carefully balanced, still generally leads to certain deficiencies like choline and potassium. They are just not significant enough to warrant much discussion, but they are consistently found in studies when patients take EN for months or years.

Clinics that have experience with EN to treat crohn's disease are acutely aware of this, but clinics with little experience with EN are not. Someone making "smoothies" to mimic EN would not be able to appreciate these differences or even be aware of them.

 

[Andersen007]

"The macro- and micronutrient composition of common polymeric formulas used for EEN was used to guide the components of the smoothie."

A "smoothie" with similar nutrients as EN should produce the same results. This does not seem unreasonable or surprising. The closer CD-Treat mimics EN, the more closely remission rates will mimic EN.

I guess what I meant by surprising, is that the wholefood based formula used in the study (recipe is at the appendix) contains very significant amount of fiber (and FODMAPs too btw). Which is in line with my own experience (I am doing better with fiber than without) but not with some other studies implying EEN's success at least partially due to lack of fiber.

 

[Andersen007]

Here is the recipe: https://onlinelibrary.wiley.com/act...01-RE-EEN_Supplemental_materials_11_8_23.docx

 

[kiny]

I guess what I meant by surprising, is that the wholefood based formula used in the study contains very significant amount of fiber

It contains very low amounts of fiber actually. Would be pretty difficult to make something with the viscosity of "a smoothie" with fiber. 13 grams of fiber per 1152 grams is around 1%.

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[Andersen007]

I guess we will agree to disagree it seems low compared to the weight but remember, there is a lot of water in this, both directly, as well as in all the fruits - to get my daily calorie needs, I would need 2+ smoothies, landing me with around 30g fiber daily. Most adults in Western societies consume below 20g fiber per day, so the least we can say is this EN doesn't reduce the daily fiber intake for most people, and still seems to be highly beneficial

 

[kiny]

The mechanism of action of EN is unknown.

But I do think some pushback against the general recommendation of some dieticians to consume fiber is warranted.

We have very credible data EN lacking fiber results in remission.

We now have data that shows reintroduction of fiber after EN induced remission is associated with relapse and return of inflammation.

We have credible data that unfermented fiber is able to fuel inflammation in crohn's disease.

We have also seen some data that prebiotics like inulin can woren inflammation.

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[kiny]

so the least we can say is this EN doesn't reduce the daily fiber intake for most people, and still seems to be highly beneficial

EN significantly reduces fiber intake compared to a regular diet.

Of 61 EN used to treat crohn's disease, 82% did not contain any fiber all. In the few that did contain fibre, fibre content was extremely low.

Remember that many of these formulations double as IV feeds, they can simply not contain any fibre at all.

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[kiny]

One can speculate regarding significance of the lack of fiber in EN.

But supposed microbiota and immune benefits from high intake of fiber are either simply not there if one rigorously looks over in vivo studies, or the role of SCFAs are strictly limited to the colon, which puts into question the significance of SCFAs in ileal crohn's disease.

However, more rigorous proof exists of non-digestible carbohydrates leading to small intestine bacterial overgrwoth and bloating leading abdominal distension.

Lack of fiber and high processing of EN also indirectly results in the elimination of mycotoxins. Mycotoxins which are omnipresent in regular diets.

When dieticians recommend high fiber and whole grain diets, it would be welcomed if they mention the risk of signficant exposure of mycotoxins they put their patients in.

"Natural diets" as recommended by your average dietician, contain a lot of metabolites toxic to life, that are not present in highly processed EN.

 

[Andersen007]

This mycotoxin stuff is interesting. Especially that I am currently eating 150g+ peanut butter a day in my homemade EN, and peanuts seem like the top offender in this regard. I might give it a try to replace it with something else and see if I do any better in a few weeks.

 

[kiny]

Mycotoxins are of interest. Unraveling crohn's disease requires explaining V. Kruiningen his observations. Cases of Crohn's disease tend to cluster within specific geographic locations and even within households.

The sheer prevalence of crohn's disease requires an environmental explanation that supports why it is widespread and results in clusters of cases.

Mycotoxins are widespread in the food chain. Because mycotoxins can develop pre-harvest and depend on local farming practices, they would result in large geographic well defined clusters of people being exposed to them. As mycotoxins can also develop post-harvest during storage, exposure could also create familial clusters. Although the most prevalent exposure of crops to mycotoxins happens pre-harvest, on the field, and is generally visible on crops after inspection. Still, the majority of crops are sold containing mycotoxins.

The study of mycotoxins’ toxicological mechanisms are rather new, and didn't get much attention until recently. The EU has now lowered its max exposure limit twice as a result of studies.

Symptoms of mycotoxin exposure are similar to those seen in crohn's disease. So far, commonly seen aphthous ulcers in crohn's disease are unexplained. Interestingly, high mycotoxin exposure in animals often causes oral lesions.

The mycotoxin deoxynivalenol, commonly known as vomitoxin, induces acute vomiting, fever and diarrhea. Vomitoxin is widespread in the human food chain. Deoxynivalenol is concetrated in ileal and colonic tissue after animal infection.

Mycotoxin are stable and can easily survive regular food processing. EN however, would limit mycotoxin exposure. The lack of whole grains, and all the steps required to derive protein from cheese (whey) and skimmed milk (casein) instead of directly consuming animal protein, would severely limit possible mycotoxin contamination, the aggressive processing involved in making EN and its dry storage, would further limit any mycotocin presence.

 

[LiteBlueSkies]

Thought I will share a recept experience of mine, once I have been doing this for longer time I will make a separate post about it. As some of you may know I have exclusively ileal disease without any medication, but EEN never worked for me, in fact it significantly worsened my symptoms, and I tried many brands. I was following an SCD-like diet that keeps me barely symptomatic, and monitor calpro regularly. Early this year calpro started rising again and I started getting symptoms too, so I decided to give another "EEN" a try - Compleat's chicken garden blend. It was sort of a Hail Mary attempt before agreeing to try a medication. To my surprise after a few days I was going to the toilet only 1-2x a day, was a completely different experience than all EEN-s I tried before. So I decided to try to replicate it at home - in the last 2 months, I am eating exclusively my homemade cream-soup / pudding consistency food, prepared exactly the same way every day, that essentially contains chicken breast, papaya, butternut squash, peanut butter, olive oil, and some other minor things, all blended together in a purée. In the last 2 months my stools have also firmed up and very consistently happen 1x a day. I dont have any other symptoms, and my calpro went down to 200-ish. I tried to deviate from it 1-2 weeks ago and I immediately got symptomatic again, although mildly, and still haven't gone back to the super solid stools again like I had before going a bit rogue. So very strange, given I miserably failed all these heavily processed, sometimes elemental shakes, that contain no fiber, and this one caused such a huge improvement. I was never really malnourished nor had any extra-intestinal manifestations so cant comment on those. But it would be great to understand wtf is going on, as my personal experience constantly contradicts most research.

Ummmm
Do you cook the chicken breast first or the squash etc? Or do you just mix it all up just RAW ?

 

[Andersen007]

Ummmm
Do you cook the chicken breast first or the squash etc? Or do you just mix it all up just RAW ?

Everything precooked ofc