Elemental nutrition - need recommendations

[Theburn]

I've been diagnosed with IBD in 2012, inflammation from end-to-end but it's non-specific. Biopsies and serology tested negative for Crohn's, but yet it looks like Crohn's on capcule camera and endoscopy.
Mesalazine and prednisolone have not helped!

What did:
NO more pain sice stopping gluten & grains.
Limiting foods high in salicylate
Avoiding high IgG reactive foods has helped too
Low/medium FODMAP-ish, eating fodmaps but avoiding high ones
Limiting dairy (IgG reactive, casseine and whey increase my overall inflammation anyway).
Limiting starch
AVoiding caffeine (this erodes my intestinal lining! so no coffee and tea, i do eat chocolate sometimes)
Cook vegetables for at least 20 minutes, don't eat anything raw.

Although i'm eating at least 3000kcal a day I'm still underweight, 56kg at 174cm.
I have many symptoms of malnourishment like hair loss, greying hair, fatigue, rapid premature aging.

I want to give elemental nutrition a try.
What i like to see in a formula is;
No arificial coloring etc.
Simple sugars, glucose / dextrose
Protein peptides, preferably mostly broken down proteins
Medium chain triglycerides
Free of lactose, gluten

I found the following formulas on this forum;
Peptamen
MOdulen
Enlive!
Subdue
Vivonex <--- Best?
Optimental
Elemental 028 Extra <--- UK
Pepdite 1+ <--- UK

Can anyone recommend me which one to try?

 

[Theburn]

I've narrowed the list down to TRUE elemental formulas.

Vivonex
Elemental 028
Tolerex

The price however is quite shocking! I didn't expect it to be so expensive.
18 x vivonex goes for 120 euro or so, if i drink 8 a day to get 2000 kcal it will cost me 52 euro a day....

I'm considering creating my own elemental formula based on amino's from Jo-Mar labs.

 

[charlottem]

I've narrowed the list down to TRUE elemental formulas.

Vivonex
Elemental 028
Tolerex

The price however is quite shocking! I didn't expect it to be so expensive.
18 x vivonex goes for 120 euro or so, if i drink 8 a day to get 2000 kcal it will cost me 52 euro a day....

I'm considering creating my own elemental formula based on amino's from Jo-Mar labs.

Hi there, Ive got inflammation and some drs are saying its crohns and some are saying its not. Im on the elemental extra 028 and its definitely the best feed ive been on. I found peptamen caused me too many issues but everyones different. I use the unflavoured elemental and put it through my PEGJ tube

 

[Cat-a-Tonic]

Hi, welcome to the forum. I did 2 weeks of EEN using Vivonex, and you're right, it's incredibly expensive. I'm not sure the exchange rate between Euros and US dollars, but for a 2-week supply of Vivonex it cost me $624 US. Ouch! That's extremely expensive. I was drinking 6 per day, so that's about $45 per day. It definitely did help me, but I couldn't afford to stay on that for longer than 2 weeks.

If you are able to create your own elemental drink, I'd love to hear the recipe!

 

[happy]

Hello Theburn,
I used VivonexPlus followed by a total elimination/exclusion diet.
Here is a link to my journey:
http://www.crohnsforum.com/showthread.php?t=31028

Here is a link about using enteral nutrition to obtain remission:
http://nutricia.co.uk/e028/uploads/LOFFLEX_Diet_-_Dietitians_Notes.pdf
E028 is available in the UK. Since you know that you have some food sensitivities it may be worth it for you to do exclusive enteral nutrition followed by a full elimination diet rather than the LOFFLEX.

This link has info about choosing the enteral nutrition and which diet to choose: http://www.crohns.org.uk/crohns_disease/nutritional_therapy/which-dietary-treatment-should-i-choose

Many children are on exclusive enteral nutrition and then do partial enteral nutrition as they return to a full diet. You may find good info in the Parents section:http://www.crohnsforum.com/showthread.php?p=694576#post694576

Good luck. May you soon be feeling better.

 

[Theburn]

Thank you all for your reponses.

@Charlottem, it's very frustrating not to have a clear diagnosis. I see you also suffer from mast cell problems and POTS, have you tried any mastocytosis treatments to see if that helps your IBD? Ketotifen, rantinidine, ceterizine etc. may help.
You say elemental 028 is the best feed you've been on so far, may i know how it has helped you?

@Cat-a-tonic, thanks for sharing your experience with vivonex.
I'm unable to link to the recipe because i've not reached the minimum of 10 posts.

At the moment i like the idea of a homemade formula better than something like vivonex which contains dextrose derived from GMO corn.

@Happy, i will definately read your log!
Yes, i will do an elimination diet after the elemental diet. I'm not convinced about the science behind the LOFFLEX diet.

 

[happy]

Hello Theburn,
Despite its cartoon cover, this book has good info about liquid formulas and it also has recipes for making your own formula: https://www.amazon.com/Crohns-Getting-remission-Enteral-Nutrition/dp/0982123442

Please do get advice from a dietician if you decide to go with homemade formulas.

 

[charlottem]

Thank you all for your reponses.

@Charlottem, it's very frustrating not to have a clear diagnosis. I see you also suffer from mast cell problems and POTS, have you tried any mastocytosis treatments to see if that helps your IBD? Ketotifen, rantinidine, ceterizine etc. may help.
You say elemental 028 is the best feed you've been on so far, may i know how it has helped you?

@Cat-a-tonic, thanks for sharing your experience with vivonex.
I'm unable to link to the recipe because i've not reached the minimum of 10 posts.

At the moment i like the idea of a homemade formula better than something like vivonex which contains dextrose derived from GMO corn.

@Happy, i will definately read your log!
Yes, i will do an elimination diet after the elemental diet. I'm not convinced about the science behind the LOFFLEX diet.

Hi there, yes I am on mast cell stabilizers which have not really helped in all honesty. Its the best because its caused the least pain and the least nausea I've tried A LOT of different feeds as well so yeah if you get the choice go with the elemental or something similar. Modulen IBD is quite good too

 

[Theburn]

@Happy, is there an ebook version available? Amazon only sells it as paperback.
Funny you recommend me to go to a dietician, usually it's me teaching them instead of the way around. . I don't bother with dieticians any longer.

@Charlottem, sorry to hear the mast cell treatments don't work for you. I have some relief with ketotifen and ceterizine but natural products like boswellia and quercetin work even better.

I'm going to try a homemade formula first but i will give elemental028 a shot when i'm back in the Netherlands.

Modulen is based on casseine so it's not really an elemental formula.
I'm intolerant to casseine and casomorphin makes me feel drowsy.

 

[happy]

I have not seen an ebook version of the book.

 

[Justanothercp]

I have never tried elemental diet, despite surgery and long term use of steroids and biological. My MD has never even discussed it as an option. I guess My question is: if I tried it, what would I be hoping for? Short-term remission- and by that I mean cutting back on the amount of medication I take? Or could I dare to dream of getting off some of the medication? Is it used just for flares? Or to achieve remission in long standing chronically difficult cases??

 

[littlemissh]

I have been on an exclusive elemental 028 diet via an NJ tube for many months on many occasions. It does help whilst on it, but the main problem I had eventually with it was that it isn't very calorific compared to other feeds and also I wasn't absorbing even the elemental substances.

I am on TPN now. But it did help me in the early days. Luckily I am in the UK and the wonderful NHS paid for it.

 

[Cat-a-Tonic]

Justanothercp - I don't think it would help you get off of medications. Elemental diets are usually used for inducing remission, and have similar success rates as steroids without the side effects of steroids. But you'd still need medication to maintain remission. So, if you'd rather try EEN than prednisone for your next flare, that would be a viable option, but it wouldn't replace your other meds aside from steroids.