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Use of elemental diets in the 70s and early 80s.

kiny

Well-known member
1976, South Africa
The use of an elemental diet in gastro intestinal diseases

L O Tim, H S Odes, P J Duys, B H Novis, S Bank, C A Helman

An elemental diet containing predigested protein, a high content of predigested fat and carhobydrate, trace elements and vitamins, was administered as the only form of nutrition to 9 adult patients with chlonic, ileal and pancreatic fistulae, Crohn's disease, ulcerative colitis, malabsorption states and abdominal lymphoma, and to 4 children with protracted diarrhoea. The diet was administered orally through a nasogastric tube for 1 - 8 weeks. Two patients were treated on an outpatient basis. There was considrable clinical improvement in 6 adults and in 3 children. Two adults and 1 child did not respond and 1 adult did not co-operate. The results justify the use of this elemental diet in carefully selected patients under strict medical supervision.
1977, UK.
Levamisole in the treatment of Crohn's disease

A W Segal, A J Levi, G Loewi

In 8 patients with active uncomplicated Crohn's disease who were not receiving any specific therapy, a clinical remission was induced with an elemental diet, and then an attempt was made to maintain this remission with levamisole. This regimen resulted in excellent control of the disease. A drug-induced arthritis developed in two patients and resolved spontaneously. There were no other significant side-effects.
1977, Germany.
Clinical and metabolic investigations in the acute stage of Crohn's disease using total parenteral nutrition and elemental diet

Böhles H. - Koch H. - Heid H. - Fekl W.

A 14-year-old female patient in the acute stage of Crohn's disease was treated with total parenteral nutrition (TPE) and elemental diet (ED). There was immediate improvement of the acute symptoms. With TPE, N retention of 3.2-5.6 g/day was achieved. With elemental diet, N retention was reduced, probably because the N content of the oral diet was too low. During the 7 weeks of treatment, a weight gain of 7 kg was achieved.
1977, France
The treatment of Crohn's disease in the child. 12 cases

J Navarro, J L Fontaine, J C Mathé, J P Girardet, P Pernin, J F Mougenot, C Polonovski

Therapeutic aspects of Crohn's disease in pediatrics are discussed. New renutrition techniques are pointed out: total parenteral nutrition in 4 cases, and constant rate enteral nutrition in 6 cases (with elemental diet). In association with anti-anflammatory and anti-bacterial drugs results seemed very remarkable: in all cases, dramatic clinical recovery, and even radiologic improvement. In two cases surgery appeared to be defered after more than one year of evolution.
1980, UK
Elemental diets in treatment of acute Crohn's disease.

C O'Morain, A W Segal, and A J Levi

Twenty-seven patients with 32 acute exacerbations of Crohn's disease were treated for four weeks with an elemental diet. At the end of treatment 29 of the exacerbations had remitted both clinically and biochemically. After six months six patients had relapsed. These findings suggest that the elemental diet is effective in treating acute Crohn's disease, but the reasons are not clear. The diet may be effective because it provides nutritional support, is hypoallergenic, acts as a medical bypass from the affected area, or alters bowel flora. The patient's general wellbeing is improved by the supply of adequate energy and essential foodstuffs in a form easily available without further digestion and given in a safe, simple, non-toxic way.
1982, Canada
Continuous elemental enteral alimentation in the treatment of children and adolescents with Crohn's disease

C L Morin, M Roulet, C C Roy, A Weber, N Lapointe

Ten pediatric patients, aged 8.5-19 years, with active symptomatic Crohn's disease, received a three-week period of continuous elemental enteral alimentation with no other form of treatment. All patients in this study were selected according to the following criteria, which were applied consecutively: (1) newly diagnosed patients with no previous treatment for Crohn's disease, (2) disease activity index over 200, and (3) no complication requiring surgery. All patients experienced a clinical remission and improved their immunologic and nutritional status during the elemental enteral alimentation. The mean disease activity index for the whole group was 307.0 +/- 23.6 (range: 203 to 413) before and 69.2 +/- 11.4 (range: 15 to 114) after the feeding period. Significant increases in body weight, triceps skinfold, mid-arm circumference, serum transferrin and mean percentage of T lymphocytes were also observed. Following cessation of enteral alimentation, a small declining dose of prednisone was used during a one-year follow-up period. Eight of the ten patients were still in clinical remission three months after the feeding period and their nutritional status had continued to improve during that period of time.
1984, Germany.
Is tube feeding with elemental diets a primary therapy of Crohn's disease?

H Lochs, M Egger-Schödl, R Schuh, S Meryn, G Westphal, R Pötzi

Tube feeding (TF) with elemental diets was used as primary therapy in 25 patients with an acute phase of Crohn's disease (CD). Feed was infused continuously via a nasoduodenal tube in a dosage of 2600-3200 kcal/day. The Crohn's disease activity index (CDAI), the serum levels of a1-antitrypsin, C-reactive protein (CRP) and haptoglobin were used as parameters for disease activity; the body weight and the serum levels of albumin, prealbumin and transferrin were parameters for the nutritional status. Disease activity could be reduced in the total group by TF shown by a reduction of CDAI from 269 +/- 72 to 174 +/- 103, a1-antitrypsin from 449 +/- 160 to 378 +/- 147 mg/dl, CRP from 6.12 +/- 5.6 to 3.23 +/- 5.4 mg/dl and haptoglobin from 414 +/- 167 to 344 +/- 152 mg/dl. Nutritional status was improved (body weight 83 +/- 12% to 87 +/- 10% ideal body weight, prealbumin 20.2 +/- 7.7 to 29.7 +/- 9.5 mg/dl, and transferrin 229 +/- 107 to 310 +/- 103 mg/dl). Albumin did not change significantly. In 15 patients the CDAI was reduced to levels below 150. These patients were characterized as responders. In ten patients a normalization of CDAI could not be achieved and therapy had to be changed. With a stepwise linear discriminant analysis it could be demonstrated that patients with colonic disease and fever do not react to TF, with a probability of 90%. We conclude that TF can be used as primary therapy for the acute phase of CD in patients with small bowel disease. In patients with colonic disease and fever it is not as effective.
 

kiny

Well-known member
The precursor that lead to the development of these diets in the 60s were often called "low bulk diets", used to treat malabsorption. They weren't mass produced it seems. In the 80s Nestlé started to mass produce many elemental diets. I don't believe they used maltodextrin, but just glucose. There were also no TGF-β2 added to them. They did have MCT, and they understood very well it helped proximal absorption.

The MCT in EN are water soluble, unlike LCT. They're short hydrocarbon chains and they are very simple to absorb without enzymes from the pancreas.

There's been some discussion lately in some studies regarding how much MCT in EN contribute to the effectiveness in treating crohn's disease. I don't think it is just about MCT or glucose or which exact protein is used. All the EN were designed with bioavailability in mind, and rapid proximal absorption. Which factors contribute most to its effectiveness isn't that relevant to argue about, as long as the components cause rapid absorption and can decrease bacterial load.

It would also be very difficult to mimic the proximal uptake of EN with solid food. I am quite sceptical of that small "CD Treat" study with 10 patients to be honest. The diet they used had very little overlap with what is found in EN.
 
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kiny

Well-known member
The EN studies are very enjoyable to read.

Nestlé and Nutricia develop their EN in a consistent manner, a researcher can get information down to the milligram from Nestlé Health if they want to, they are very forward with information. People can replicate these studies in different demographics and we now have a good understanding of what is in EN and how they work.

Studies about solid food diets are not like this at all. No one agreees what a "Western diet" is supposed to mean, even though the term gets thrown around in every other crohn's disease study regarding diets. When studies mention carbohydrates, rarely do we see a proper breakdown of which carbohydrates the study is on about. How much of the starch you gave patients resists absorption, how much ends up in the colon undigested, 10%, 30%? We don't know. How did you prepare the meals, it impacts carb and protein content. Was it reheated or not. What did these patients eat before these studies, it impacts enzyme availability and absorption. What type of fiber, cellulose, soluble, it impacts absorption and gastric emptying. There are so many factors you can not control in these studies regarding diets and crohn's disease. They are quite useless.
 
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kiny

Well-known member
They weren't given nitrogen. He's measuring nitrogen found as part of the protein in the EN. You can measure the amount of protein by looking at how much nitrogen is in the powder. All protein contains nitrogen.
 
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kiny

Well-known member
As to why they did that, the study is from 1984, giving EN to patients was new. He probably wanted to know exactly how much protein he was giving patients.
 

kiny

Well-known member
In people with ileal disease, EN is both the safest treatment and has the highest remission rates.
 
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I had just made a comment on a thread lamenting the fact that we might be facing the cure ie EEN (at least for now & the only non-pharmaceutical option) that is in front of us all this time but are not able to embrace it. So when we say we will do anything for a cure we might need to make that conditional: we will do anything except for not eating solids for a cure for Crohn's.
 

kiny

Well-known member
The only thing holding EN back for some people is adherence. There's been a few studies where they add a vanilla or chocolate taste for patients to make it more palatable.

Even if some people can't adhere to EN, people with crohn's disease (especially those with ileal disease) should have EN at home as a security. EN is able to bring down inflammation quickly.
 
I've heard a concern that gets brought up often and that's the formula recall that tends to go around from brand to brand. I think a while back it was Ensure and then the famous Kate Farms got hit too.
 

kiny

Well-known member
Ah. I am only familiar with Nutricia 028 and Nestlé Modulen. Segal his team in the 80s used Vivonex, which Nestlé still sells but they have added TGF to Modulen specifically for crohn's. They're in powder form.

There are lots of these liquid drinks like Ensure, but they are rarely tested, I have no idea if they are effective. They might contain less MCT.
 
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Ah. I am only familiar with Nutricia 028 and Nestlé Modulen. Segal his team in the 80s used Vivonex, which Nestlé still sells but they have added TGF to Modulen specifically for crohn's. They're in powder form.

There are lots of these liquid drinks like Ensure, but they are rarely tested, I have no idea if they are effective. They might contain less MCT.
I don't think I heard of any recall for Modulen and Neocate. Might be better quality control.
 

my little penguin

Moderator
Staff member
Modulen is not sold in the US
The US version is peptamen from Nestle
Abbott was the one with recalls which included elecare jr (elemental)
Neocate was nutrica brand of elemental formula which due to abbots recall was short supply

plenty of kids and adults use the main stream versions of boost and ensure neither of which are formula for infants or toddlers or special needs
But just polymeric formula sold as complete nutrition
 
Modulen is not sold in the US
The US version is peptamen from Nestle
Abbott was the one with recalls which included elecare jr (elemental)
Neocate was nutrica brand of elemental formula which due to abbots recall was short supply

plenty of kids and adults use the main stream versions of boost and ensure neither of which are formula for infants or toddlers or special needs
But just polymeric formula sold as complete nutrition
Modulen is available for the US market. I purchased mine here: https://www.nestlenutritionstore.com/modulenr.html
 

kiny

Well-known member
Modulen is available for the US market. I purchased mine here: https://www.nestlenutritionstore.com/modulenr.html
I don't know why they price it so high. In Europe the price is much lower from pharmacies.

Is peptamen also so expensive in the US?

I wonder if people from the US can't use forwarding companies and order it from Europe or something.

€13 in France. But you always get stuff like coupons, and get bulk discounts, so it costs about €10 or so per can.

I have bought Nutricia's 028 Elemental in the past at cheap prices (the powder form), but it went up in price lately. 028 tastes bitter though, it's the hydrolysed protein I believe. Kids won't like the taste of 028, Modulen tastes like sugary milk and is pretty easy to tolerate. There was someone who used 028 Elemental on this forum, but she hasn't been active on the forum since a while. In studies 028 was slightly more effective in reducing remission than Modulen, but the difference was really small, both Modulen and 028 can induce remission in most patients.

I always buy powdered forms of EN, since you can just buy it in bulk, which means you can get discounts from stores or distributors. I'll drive around and pick it up somewhere if some pharmacy doesn't ship across country border. 028 used to be very cheap in Italy, so I just drove there and picked it up. I would never do that with liquid forms of EN, they don't last as long.
 
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kiny

Well-known member
In theory you can sort of mimic EN right. You can buy glucose, MCT, hydrolysed whey and micronutrients (vitamins and minerals). Modulen adds growth factor TGF-β2 to their EN, but EN without added TGF work fine too.

But you would need to know a bit about how emulsifiers work to make these ingredients work together, all these EN use an emulsifier, modulen uses Lecithin to do it, it's the E322 in their ingredient list. That's not so easy to do unless you work in the food industry.

The closest thing to EN is likely diet modifications like SCD and low FODMAP that limit starch intake and the ability of bacteria to ferment undigested carbs. But it is far less effective than EN.
 

kiny

Well-known member
There was someone who used 028 Elemental on this forum, but she hasn't been active on the forum since a while.
I remembered now, it was SarahD. She used 028. I also used it for a while. I really don't know many people that use it really, it's just expensive due to the hydrolyzed whey probably.

https://crohnsforum.com/threads/elemental-diet-how-quickly-does-it-start-to-help.32638/

Of all the EN tested in studies, 028 has the highest remission rates from what I can tell.

It is just very expensive and unless you can get it for cheap or get a prescription for it, it is financially costly. The remission rates of other EN are very close, it is just a few percentages difference. The differences with other EN are small enough that it is not really statistically significant.

028 also tastes very bitter. You get used to the taste after a while, but it does not taste like Modulen at all. Modulen is sweet tasting.
 

kiny

Well-known member
Regarding how fast EN works is debated in the thread. Like someone said, EN works pretty fast.

Many EN studies follow up after 8 weeks, but EN works much faster in people where we know it works well. In people with ileal disease using EN the drop in inflammatory markers can be quite shocking.

When I started on EN, calprotectin was checked daily, the drop in calprotectin was very dramatic. I also have ileal disease. There's some debate about how well EN works for colonic disease, it seems to work slightly less in some studies, and just as well in others. We do know it works very well for ileal disease.

https://www.mdpi.com/2624-5647/3/3/14

Sustained Crohn’s Disease Remission with an Exclusive Elemental and Exclusion Diet: A Case Report

Johns Hopkins University, Baltimore, MD 21218, USA

2021


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kiny

Well-known member
As to why EN can have such a dramatic effect when it is not blocking cytokine like TNF-alpha or IL-23. The answer can imo be found in Rutgeerts and Harper their old studies. The fecal stream drives inflammation. Without a fecal stream, inflammation subsides dramatically. The immediate effect of bioavailable elemental nutrition would be a sudden drop in fecal content. "bowel rest" if you want. The long term effect is a drop in bacterial load.
 

kiny

Well-known member

"After fecal stream diversion, bacterial loads decreased significantly in the defunctioned ileum. Based on the Chao1, Shannon, and observed species indices, the diversity of mucosa-associated microbiota was lower in the defunctioned ileum than in the functional ileum."
I don't think EN works by "modulating the microbiome". People on EN have far more dysbiotic microbiomes than healthy controls. It just plummets bacterial load, the fecal stream and the bacteria associated with it are the antigen, the opportunistic pathogens, "pathobionts" if you wish, starve, and inflammation subsides.

I don't believe it has anything to do with the microbiome. Yes the micriobiome is dysbiotic in crohn's, just like in every other disease involving intestinal inflammation. We don't blame intestinal TB on a dysbiotic microbiome.

Probiotics, prebiotics, FMT, none of that stuff works to treat crohn's disease. It worsens crohn's disease since you are just introducing antigens.
 

kiny

Well-known member
A simple study they should be doing is asking patients if they feel better the days after a colonic prep for an MRI or colonoscopy that has removed much of the fecal content.
 

my little penguin

Moderator
Staff member
e028 elemental is now Neocate splash premixed
As unflavored
Vanilla
Pineapple orange
Grape
Tropical fruit

my kiddo hated it
He would drink the powder neocate Jr chocolate and tropical which was elemental
So it’s just a matter of preference
 



I don't think EN works by "modulating the microbiome". People on EN have far more dysbiotic microbiomes than healthy controls. It just plummets bacterial load, the fecal stream and the bacteria associated with it are the antigen, the opportunistic pathogens, "pathobionts" if you wish, starve, and inflammation subsides.

I don't believe it has anything to do with the microbiome. Yes the micriobiome is dysbiotic in crohn's, just like in every other disease involving intestinal inflammation. We don't blame intestinal TB on a dysbiotic microbiome.

Probiotics, prebiotics, FMT, none of that stuff works to treat crohn's disease. It worsens crohn's disease since you are just introducing antigens.
Wait, why are pro/prebiotics considered antigens?
 

kiny

Well-known member
Those prebiotics like inulin are made from fructans, because they resist hydrolysis they end up in the ileum and colon. They interact with the immune system and are potential antigens.
 

kiny

Well-known member
Why probiotics are potential antigens. They're bacteria. The intestine is permeable, to allow nutrients to go through. It is therefore also the site most susceptible to bacterial infection.

There's 2 main immune parts of the intestinal barrier, the epithelium and below that the lamina propria. It is a giant concentration of millions of lymphocytes, macrophages and dendritic cells in the body. There's also tons of specialised cells, peyer's patches and M cells that take up antigen on purpose, they present them to dendritic cells. They're small pockets of extremely concentrated T cells and B cells. There used to be an index on this forum that explained antigen presentation.

Probiotics might be harmless in people with normal epithelial integrity, but that's not the case in people with crohn's disease. If any bacteria gets even close to the mucosal immune system, it will set off an immune reaction.

And when you take probiotics you take in millions of those bacteria. Seems like a bad idea when you think about it. The idea of probiotics is to modulate the microbiome, you can't of course, they have no lasting impact, they just serve as antigens in people with crohn's disease or people with tight junction issues.
 
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@kiny

Peptamen $170 for a case of 24 bottles: https://www.nestlenutritionstore.com/peptamenr.html
It's insanely expensive. I don't know how to use forwarding companies to get these at cheaper costs. Many families here go thru their insurance to get these drinks covered since they have therapeutic effects. I think Modulen is tasty, it tastes a lot like milk.

It's weird to read about products like this are sold outside of the US like ordinary consumer goods. I wonder if this is partly driving our resistance of using it for any gut issues. I can't imagine seeing Neocate or Modulen on Walgreens shelves (Walgreens is a national pharmacy chain). Maybe if it's more "seen" then we will be open to it.

What do you mean by "Even if some people can't adhere to EN, people with crohn's disease (especially those with ileal disease) should have EN at home as a security"? You mean drink as much as possible when you are home?

Regarding MCT... why don't we go straight to short-chain? I just saw this supplement: https://healthygut.com/product/tributyrin-x/
 
A simple study they should be doing is asking patients if they feel better the days after a colonic prep for an MRI or colonoscopy that has removed much of the fecal content.
I think they just are very hungry after a cleanout and no one feels good. lol
 

kiny

Well-known member
There have been many stories on the forum of people who got really sick but live far from a clinic or can't get an appointment. Having EN at home would be a bit is a bit of a security, so those people can at least get some nutrients and lower some of the acute inflammation. Before biologics getting people on enteral feeds was the first line of therapy.
 

kiny

Well-known member
MCT is kind of handy because you can just buy them right, you can change your EN with them. A lot of these EN are a bit high on the amount of glucose and maltodextrin (really a glucose). You can just add MCT and whey or other protein to your EN. I usually do this.

Modulen has like 54grams of carbs for every 100 grams. They claim 24 grams of that is sugar iirc. They throw the maltodextrin under complex carb, not true of course. Maltodextrin is a simple carb. EN tend to be high on sugars, and you can modify them a bit by adding some protein for example, or MCT if you can tolerate it, it takes a while for your body to adjust to MCT, even the one already in EN.

Basically you can lower the relative sugar content of EN without losing their effectivness. Part of the reason EN are a bit high on sugars is likely that it's cheaper than adding more expensive protein or MCT. Likely has nothing to do with their effectiveness, the effectivness of EN is due to its bioavailability, and lack of starch which means lack of fermentation for bacteria.
 
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MCT is kind of handy because you can just buy them right, you can change your EN with them. A lot of these EN are a bit high on the amount of glucose and maltodextrin (really a glucose). You can just add MCT and whey or other protein to your EN. I usually do this.
Oh, I mean for the manufacturers of these drinks... why stop at MC? Isn't SC better than MC?
 

kiny

Well-known member
No idea. I guess because it doesn't matter. MCT are readily taken up.

EN could all be made from hydrolyzed whey, but the hydrolysis process costs money, and people with crohn's disease don't seem to have any issues breaking protein down in peptides themselves.

I know little about the food industry, but I guess they have to balance costs for each of these processes. Like I said, EN don't have to contain that much sugar, they likely do because it's cheaper than adding more MCT or protein.
 
Regarding how fast EN works is debated in the thread. Like someone said, EN works pretty fast.

Many EN studies follow up after 8 weeks, but EN works much faster in people where we know it works well. In people with ileal disease using EN the drop in inflammatory markers can be quite shocking.

When I started on EN, calprotectin was checked daily, the drop in calprotectin was very dramatic. I also have ileal disease. There's some debate about how well EN works for colonic disease, it seems to work slightly less in some studies, and just as well in others. We do know it works very well for ileal disease.

https://www.mdpi.com/2624-5647/3/3/14

Sustained Crohn’s Disease Remission with an Exclusive Elemental and Exclusion Diet: A Case Report

Johns Hopkins University, Baltimore, MD 21218, USA

2021


View attachment 4404
This is an incredible (and heartbreaking) case. Should have gone straight to EEN-SCD but no one can tell the future. The MRE improvement is very impressive.
 
MCT is kind of handy because you can just buy them right, you can change your EN with them. A lot of these EN are a bit high on the amount of glucose and maltodextrin (really a glucose). You can just add MCT and whey or other protein to your EN. I usually do this.

Modulen has like 54grams of carbs for every 100 grams. They claim 24 grams of that is sugar iirc. They throw the maltodextrin under complex carb, not true of course. Maltodextrin is a simple carb. EN tend to be high on sugars, and you can modify them a bit by adding some protein for example, or MCT if you can tolerate it, it takes a while for your body to adjust to MCT, even the one already in EN.

Basically you can lower the relative sugar content of EN without losing their effectivness. Part of the reason EN are a bit high on sugars is likely that it's cheaper than adding more expensive protein or MCT. Likely has nothing to do with their effectiveness, the effectivness of EN is due to its bioavailability, and lack of starch which means lack of fermentation for bacteria.
@kiny, how do you "buy" MCT?
 

kiny

Well-known member
@kiny, how do you "buy" MCT?
MCT can be bought anywhere. But MCT mixes poorly with everything . You need emulsifiers to add it to anything. You can buy emulsified MCT, like Liquigen, or you add it to something that already contains emulsifiers like EN. EN already contain the emulsifiers, they have lecithin which is why the MCT doesn't separate.

You should not consume too much though, people are horrible at absorbing fat, even MCT. People on these ketogenic diets likely don't lose weight because they dropped carbs, but because they don't absorb the fats they consume. But MCT balance these EN out, so they're not too high on sugar.
 
@kiny I was looking at the growth factor that is missing from Neocate Jr. formulation. Is the growth factor in Modulen for Crohn's or more for the nutritional value that is generally lacking in patients?
 
I've used E028 a few times in the past - and still have it to hand in case of issues.

I know current protocol has been to do it for 6-8 weeks, but I've only ever used it for a stretch of 17 days maximum. The calprotectin does come back down.

I don't find it tastes bitter at all - although I have always used the liquid cartons, never the powdered form. Put it in the freezer, and it's just like frozen ice cream.

What's the purpose of adding the growth factor to Modulen? Where do they state that this was added, as I wasn't aware this was included...

Probiotics, prebiotics, FMT, none of that stuff works to treat crohn's disease. It worsens crohn's disease since you are just introducing antigens.
I'm curious with this, because surely this is dependent on when you add these in - if you look at Jini Patel Thompson's protocol, she advocates the use of probiotics from the start, alongside elemental diet - and I'm thinking that this works because the elemental diet works to reduce intestinal impermeability, then the probiotics are a further protective layer.

Adding probiotics hasn't shown any clinical benefit - but I'm not aware of it worsening CD on it's own. In any case, they will only be present in the bowel for as long as you continue taking them.

My understanding is that CD is only reactive against certain bacteria, not all bacteria - this is why exclusion diets, and monitoring food reactions work. You are keeping the overall bacterial load low, and not letting one bacteria gain too much traction - i.e. the healing is in keeping the diversity + total bacterial load 'within limits'. So surely probiotics - on the basis they are 'safe' and introduced gradually, will only help such diversification?


There's been some discussion lately in some studies regarding how much MCT in EN contribute to the effectiveness in treating crohn's disease. I don't think it is just about MCT or glucose or which exact protein is used. All the EN were designed with bioavailability in mind, and rapid proximal absorption. Which factors contribute most to its effectiveness isn't that relevant to argue about, as long as the components cause rapid absorption and can decrease bacterial load.
Agreed, but the LCT in Modulen make it less clinically effective. Efficacy falls if there is more than 15g long chain triglyceride per day, and Modulen contains too much.

Would there ever be a danger on staying long-term on elemental diets only? As keeping the dysbiotic microbiome over a longer period of months / years would there make it harder to transition back to solid foods (i.e. you'd report more food intolerances due to sustained dysbiosis) ?
 

my little penguin

Moderator
Staff member
@ncman
If you freeze formula -even E028 (Neocate splash ) the formula loses it’s nutritional value -there are warnings against freezing on the neocate website
It can be frozen as a treat but not considered part of the real calories taken in
 
@ncman
If you freeze formula -even E028 (Neocate splash ) the formula loses it’s nutritional value -there are warnings against freezing on the neocate website
It can be frozen as a treat but not considered part of the real calories taken in
Thanks, you learn something new everyday! I didn't freeze many, it was mostly refrigerated, but will note if I ever go on them in future.
 

kiny

Well-known member
Is the growth factor in Modulen for Crohn's or more for the nutritional value that is generally lacking in patients?
TGF-β is very deliberately put into Modulen by Nestlé to help crohn's disease patients.

TGF-β is a cytokine.

Cytokines are small proteins that are made by cells that change what other cells do. They do this by interacting with receptors on the cell. They're basically orchestrators of the immune system, they tell other cells to increase inflammation or dampen it, they can also invoke things like fevers.

TGF-β is a special kind of cytokine. It doesn't belong to the TNF family, it doesn't belong to the long list of interleukins. But it has many functions, most of which we don't understand.

It is naturally produced by the immune cells in the intestine, the lamina propria to be specific, it's the layer of tissue below the epithelial barrier, full of immune cells. It likely dampens the immune response.

There was some apprehension about adding TGF-β to elemental nutrition at first, because TGF-β is involved in collagen production. There was a chance it could worsen fibrosis. But several studies have shown it does not, if anything EN with TGF-β like Modulen seem to lessen fibrosis over time. Most of the wall thickening in patients with fibrosis seems to be related to muscle and inflammatory tissue than actual scar tissue. Don't forget that the intestine are giant muscles.

Anyway, Nestlé found a way to produce TGF-β and they put it in Modulen. It likely acts as a local anti-inflammatory. They have some kind of patented system on the production process, it's not so easy to produce TGF-β on an industrial scale. It's not like you can just buy this stuff, it was a pretty unknown cytokine until recently.

Some interesting studies have tried to figure out if you give more EN with TGF-β like Modulen to patients, does it work better than giving less. We're still trying to solve the question...is EN's effect due to exclusion of solid food...or is there something in EN that dampens inflammation or modulates immune cells..or is it both. The patients that were given slightly more had slightly lower inflammation, so maybe this is because of the TGF-β. Anyway, there are plenty of studies that show EN without added TGF-β work just fine too, but TGF-β likely helps.
 
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kiny

Well-known member
Would there ever be a danger on staying long-term on elemental diets only?
There's some problems with EN, but they can be overcome.

1) EN has almost no fiber in it. This can cause constipation because it delays gastric emptying because there's no bulk in the stool. But there's no reason why someone can't add some fiber in cellulose form to EN to promote gastric emptying if they are constipated.

What one shouldn't do is add carbohydrates that are easily fermented by bacteria. You're defeating the whole point of the EN then by feeding bacteria that will ferment it. High starch and high FODMAP diets are a problem because they feed bacteria, that's why SIBO is so common in the West.

But adding a bit of cellulose to your EN diet shouldn't be a problem, it doesn't require much to add some bulk to stool.

2) Some studies showed that people who have been on EN for years tends to have a very small potassium shortage after a few years, which is no big deal at all and easily fixed.

3) There's the argument that EN is uhealthy because it is a bit high in simple glucose and maltodextrin and spikes the blood sugar. I think one should be more worried about crohn's disease first. But if it is a worry, there is no reason why one can't just add some whey protein to EN or a little bit of MCT to lower the relative sugar content.

4) "EN is bad for the teeth if you drink it". Yes, just like every sugary drink. Using a straw and rinsing your mouth makes this a non-issue.

5) "The taste is bad". Well, the bitter taste from some EN comes from the hydrolysed whey. Not all EN use hydrolysed whey. 028 tastes very bitter, but modulen tastes like sugary milk because it uses casein. All EN tastes a bit different, and you quickly get used to the taste, even of the bitter ones. There's also some studies where they added a bit of vanilla or other extracts to the EN, that is an option.
 
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5) "The taste is bad". Well, the bitter taste from some EN comes from the hydrolysed whey. Not all EN use hydrolysed whey. 028 tastes very bitter, but modulen tastes like sugary milk because it uses casein.
@kiny Do you know kiny if the casein that Nestlé is adding to Modulen is just the same than the one that can be bought on any shop? I am pretty satisfied with the whey protein but I was thinking of trying casein instead to see if it also works well.
 
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I guess it all depends on what their normal diet was to begin with, maybe they just ate bad food and chances are likely. Could have put them on any diet that was healthier perhaps, and had improvement.
 

kiny

Well-known member
@kiny Do you know kiny if the casein that Nestlé is adding to Modulen is just the same than the one that can be bought on any shop? I am pretty satisfied with the whey protein but I was thinking of trying casein instead to see if it also works well.
Modulen is completely lactose free and enriched with TGF-b. Commercial casein protein powders will still have lactose from the skimmed milk. Really no reason to really buy casein protein over whey, casein is just more difficult to digest. Whey protein is so easily absorbed that it never reaches the ileum and you give the ileum a break. The goal of EN is really easy absorption, as proximally as possible, reducing the fecal stream. EN are free of lactose, fructose, fibers, etc.
 

my little penguin

Moderator
Staff member
@MrWheat
Please talk to your Gi
Amino acids (elemental formulas ) are used for kids and adults due to severe food allergies /short gut and other syndromes
No intact proteins so unlikely to cause an allergic reaction
For kids that’s elecare jr , neocate jr or vionex jr
For adults I know they have vionex ready feed premixed
Elemental formula is extremely foul tasting most kids need an ng tube in order to consume it
My kiddo was able to drink neocate jr orally

there is also neocate jr (splash ) which some little kids like
My teen hated it
Designed for kids 1-13 nutritional

not nutritional complete formula
But as a supplement
Orgain vegan -is organic and lactose free
Does have pea protein
My lactose intolerant (non ibd ) kiddo drinks those
My ibd kiddo refuses says they taste too bad but was willing to drink neocate jr so go figure

again ask your doc
Neocate Jr at least uses sucralose so mo actual sugar
Not sure on the other ones

my teen also tried modulen and hated it
But drank peptamen jr for years which is the US version
So very individual
Good luck
 
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