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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental 028 NO PROTEIN. Is this this bad?


02-11-2011, 10:44 AM   #1
supercellbaebe
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Elemental 028 NO PROTEIN. Is this this bad?

Hello!

I am on the 028 Elemental Extra Cartons and I just found out they have NO PROTEIN in them. They have aminos acids but because there's no protein whilst on them I will not build muscles.

I am very underweight and I need to gain weight, but if I don't have any protein I am worried I will only gain fat and not actually gain any lean tissue.

This is a concern because I want to get healthy and well and a body with very little muscle certainly won't be healthy.

Is this really a valid concern? Or am I just worrying unnecessarily?

Do you reckon adding protein powder (which in the past has caused severe reactions and is intolerable) is necessary?

I am just really worried about this, so for anyone who knows anything about this please help!

Heidi xxx
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02-11-2011, 11:13 AM   #2
Rebecca85
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I think amino acids the building blocks of protein. Like sugars make up starches. So amino acids are a 'digested' form of protein that is easy for you to absorb.
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02-11-2011, 11:16 AM   #3
Rebecca85
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Something has just occurred to me. You say protein powders cause a reaction. Casein is often found in these powders. Have you ever tried a gluten free, casein free diet? I know many autistic children on this diet, it particularly seems to help those with digestive troubles.
02-11-2011, 11:26 AM   #4
soupdragon69
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Rebecca is right with her comments. My dietitian told however they couldnt meet my protein requirements with just the drinks so I had a different powder to add that was more amino acids to compensate. I still lost muscle mass during the 6.5mths on the drinks but not as much. The powders I added smelled terrible though and they only got me to add them in after being on the drinks at least 3mths because it meant I wasnt going to be on the elemental short term.

As I said in the other thread blood tests are important to keep track of your electrolytes etc. The above reasons and others are why you need to under direct guidance of a good dietitian that knows IBD well.
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02-11-2011, 12:13 PM   #5
supercellbaebe
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Thank you Rebecca and Jan for your responses.

Rebecca, yes I have done the GF/CF diet, unfortunately it didn't help with my digestive problems, it appears I have a problem with just ALL digestion of food and no specific foods cause better or worse reactions with me. I have to confess I've tried every elimination diet on the face of the Earth and I have just reached the conclusion that I've somehow switched off my entire digestive system. I think trauma, chronic anxiety and phobias have caused it. I've read that being in a constant state if fight or flight actually does switch off your entire digestive system.

In terms of the protein thing though, it is a major concern for me, so I might experiment with some protein powders, but I know from experience anything requiring digestion in any form seems to cause problems.

Thank you both

xxx
02-11-2011, 12:46 PM   #6
Rebecca85
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So you're really in a vicious circle aren't you? The more anxious you are, the more digestive problems you get, causing you anxiety! Would it be possible for you to be fed straight into your veins (TPN?) and give your system a complete rest, and hopefully break the cycle? As for the phobias and anxiety, I know you don't have anorexia nervosa, but I think some of your issues may overlap (anorexics can develop extreme anxiety about eating), maybe a therapist of some sort who specialises in eating disorders can help?
02-11-2011, 12:49 PM   #7
Rebecca85
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As for protein powders, maybe something like this would be more suitable for you? http://www.naturesbest.co.uk/amino-acids-camin_pg1/
02-11-2011, 01:16 PM   #8
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Thank you Rebecca and Jan for your responses.

Rebecca, yes I have done the GF/CF diet, unfortunately it didn't help with my digestive problems, it appears I have a problem with just ALL digestion of food and no specific foods cause better or worse reactions with me. I have to confess I've tried every elimination diet on the face of the Earth and I have just reached the conclusion that I've somehow switched off my entire digestive system. I think trauma, chronic anxiety and phobias have caused it. I've read that being in a constant state if fight or flight actually does switch off your entire digestive system.

In terms of the protein thing though, it is a major concern for me, so I might experiment with some protein powders, but I know from experience anything requiring digestion in any form seems to cause problems.

Thank you both

xxx
Have you tried supplementing your diet with fresh vegetable juices?

Just a warning, there are almost NO calories in vegetable juice, so you CANNOT survive on it. It's like drinking nutrient water, no calories. You need to get calories from somewhere other than vegetable juices.

If you keep doing what you are doing AND add in fresh vegetable juices you may notice a difference as your body will be getting mass quantities of nutrients, which are required for bodily functions like hunger, healing, digestion etc.

Has to be fresh juice, just made and drank immediately.

You are drinking man made food in a can or box (not sure what that comes in) then I could see how it can make you sick, or not help in healing, if used exclusively.

You might want to try carrot, celery, spinach and parsley. Start slow. Parsley is good for the nerves, carrot is good for digestion as is spinach, and celery is loaded with nutrients and minerals and salts good for a whole host of things. Parsley and celery are actually related.

If you can tolerate it, you probably can't drink too much of it. The green stuff (parsley and spinach) can cause a bit of nausea if you aren't used to it. Carrot alone should be safe for most conditions and body states, you might want to start with just a glass of that.

If you haven't eaten in a while and your body is in need of calories, you might want to see if IV feeding in a hospital is what you need to make sure you aren't in any immediate danger due to lack of calories.

I don't agree with many doctors, but one area I do agree doctors are useful for is acute emergency care in life threatening situations - amputations, recessetation and keeping people alive. I don't agree with the long term 'disease' treatment, I won't say this often, but in your immediate case I don't think dr. supervision is a bad thing necessarily.

They shouldn't object to you juicing, ask them.

Last edited by endibd; 02-11-2011 at 01:19 PM.
02-11-2011, 01:54 PM   #9
endibd
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Hello!
I am very underweight and I need to gain weight, but if I don't have any protein I am worried I will only gain fat and not actually gain any lean tissue.
PS if you eat a balanced diet, provided you get enough calories, it's impossibel to be protein deficient.

You might want to set a goal towards eating a balanced diet with enough calories instead of worrying about building muscle vs. building fat.
02-11-2011, 02:21 PM   #10
supercellbaebe
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Thank you ever so much Rebecca, your words are lovely . You've absolutely hit the nail on the head. I am desperate to eat, but that actually sets me up to fail in itself because I work myself up, convinced if I eat I will get awful GI symptoms, and I do! Because I am so worked up about it. I really do now have a phobia of eating because of the symptoms. Its like being in a massive spiral, horrible.

I really like your idea of getting fed Parent-ally for a period. I think this would actually just give my system a complete rest, and I'd also be able to stop panicking about being bloated and constipated on the Elemental drinks. Great idea, I will mention that when I next see my GP. I'm doing some mindfulness and meditation techniques to try and take control of my life again, and I'm starting Yoga on Sunday, I am very hopeful things will soon be improving

That protein tablets you sent me the link for look brilliant, although they are pretty pricey, I might try whey protein, and hemp protein before them. But it is good to know there is something to fall back on if the horrid symptoms come from having the powder mixes.

Thank you so much , I really appreciate it!



xxx
02-11-2011, 02:30 PM   #11
supercellbaebe
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Endibd, thank you very much for your suggestion with the vege juices, I'd forgotten about that being a possible option. I will try with them because a few years ago I used to have them. I think if they require any digestion I might have problems with them, but you are right in terms of them being highly nutritious and an excellent way to get protein and other vitamins and minerals.

I must confess, I really do not like being on the Elemental 028 diet. I'm into healthy eating, I love to eat a whole range of balanced foods which are nutritious. Its a very very frustrating position to be in to be reliant on the "Man Made" carton drinks as you so accurately put it. Very frustrating...

I really really hope I can eat soon without being ill, I will definitely try the juicing though, excellent idea

Also, I will try not to worry about the fat vs lean tissue issue of weight gain, I even feel a bit silly for worrying about it to be honest. I just have to somehow get healthy and get eating.

Thank you

Big hugs


xxx
02-11-2011, 02:53 PM   #12
endibd
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I think if they require any digestion I might have problems with them, but you are right in terms of them being highly nutritious and an excellent way to get protein and other vitamins and minerals.
The reason I love fresh live juices are that the digestion is done for you, and all the nutrients are already there.

When you say digestion, what that is, is your body needs to work to separate the fibre from the nutrients the fibre cells. It works hard at that, and it takes considerable energy and time.

That process takes energy, that takes enzymes, that takes all the stuff in your saliva, as well as the mecahnical process of chewing and breakdown as food flows through you and the juices are extracted.

With juice, if it's live and fresh, all that work your body needs to do is already done by the juicer!

The minerals and chemicals and enzymes and macro and micro nitrients are already separated from the cellulose fibres and dissolved in water already. All you need to do is drink it (like water) and when it hits your gut it simply passes through the wall of your guts right into your blood stream (like water). Think of it like water, that's really what it is.

You get an immediate hit of nutrietns and hydration, those nutrietns already in the optimal form dissolved in water for your body's use, and your body can use it immediately.

Simple. Drink the juice, it soaks through the lining of your gut, goes into your blood, and it immediately goes to work in your body. Your body has to do nothing.

It's super easy to absorb by the body, and there is no chance that due to health issues that the nutrients can't be extracted from the fibre as is the case often with crohn's - that was already done by the juicer!

When people say they don't think they can digest fresh juices, and I've heard it a few times already, I'm at a loss as to what they are referring to.
02-12-2011, 03:57 PM   #13
Lydia
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Have you considered hypnotherapy? It can work great for phobias and anxiety.
02-12-2011, 11:13 PM   #14
Piatchi
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I don't think this was brought up in this thread, but the Elemental Diet's main premise is to deliver already-digested or easily digestable nutrients in your diet and give your colon a break.... so if the drinks had protein in them, it would fly in the face of the entire diet's purpose. With the drink providing all of the amino acids necessary, your body doesnt have to break down the proteins into amino acids itself.

With that said, I am completely in agreeance with you; we should probably be eating what nature intended, a nice balanced diet. But, I suppose, since we have such a severe disease, we might need to bend the rules to be the healthiest.

Best of luck. I hope you put on some weight and feel good again

Trevor
02-13-2011, 07:23 AM   #15
supercellbaebe
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Thank you everyone for you advice and lovely messages I really appreciate these words of encouragement.

Yes Piatchi, you are right, I think we have to bend the rules a bit in our situation. Its pretty unavoidable to be honest. And lets face it, Elemental diet is better than nothing!

Hypnotherapy is one of the therapies I have never tried, I would love to try it, but I'd have to pay private because I can't get an NHS referral and unfortunately I just don't have the money. But maybe one day I'll be able to convince the NHS to refer me, that would be good! But yes I would like to try Hypno, it seems to have a very good success rate.

xxx
02-22-2012, 08:19 PM   #16
cristian
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guys i have it for 4 years now... i am realy ok now it never came back but i have the same problem i can't add some weight. i can eat a massive range of food i don't feel nothing to bather me i hit the gym and still nothing for the last 4 years i still on 59 kg - 60 kg ...Any suggestion?
02-28-2012, 10:57 AM   #17
littlemissh
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Have you seen a dietician. There are loads of energy rich foods and also supplements to take to help with your weight and they could advise.
The other thing- are you underweight or wanting to build muscle?
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01-04-2014, 01:01 PM   #18
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Whaaaa? There are no proteins in 028 Extra?? But it says protein equivalent??? Doesn't that count? I need to build up muscle too, and am getting a bit of edema from lack of protein(and movement, moved around more at home) like last time I was in hospital. I lost a bunch of weight, so 028 should be fine for calories if I drink enough, but I NEED that protein surely?!
01-05-2014, 11:10 AM   #19
littlemissh
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It contains 'predigested protein' ie amino acids so that your body can absorb it easily- so don't worry!
01-05-2014, 02:36 PM   #20
my little penguin
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^^ yeah that
elemental formula is designed for kids/adults whose immune systems react to all food proteins.
elemental formula only use the first few inches of intestine to absorb nutrients.
whole food require most of the small intestine.

kids with EGID are placed on E028 only as sole nutrition and continue to grow and gain weight so...
no worries.
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01-06-2014, 03:48 PM   #21
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Well don't we feel special. Not being able to absorb protein properly XD I can't drink these damn drinks fast enough anyway. 4 over 6-7 hours seems to have given me massive gurgles and painful rumblings... that or it was the OXO cub disolved in hot water that the dietitian said would be ok!!! Maybe I just drank too much over too short a time and my tubes can't process it all quick enough...
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