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03-13-2015, 08:12 AM   #1
kimmidwife
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Best protein powders

My daughter's doctor wants her to gain weight or at least not lose anymore. We have tried boost, pediasure etc. she hates all of them. ( can't blame her they are pretty bad)
So now I am thinking of protein powder. Which have you tried?
Which one tastes the best?
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
03-13-2015, 08:31 AM   #2
my little penguin
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Most protein powders taste a lot worse than boost or pediasure - bith taste way better than the semi elemental and elemental formulas IMO and DS opinon . He said boost/pedisure tastes like dessert . I think it just depends on your frame of reference.
Has she tried orgain or carnation instant breakfast ?

Is there a reason she isn't doing an ng tube just at night since that tends to avoid the Taste issue and her gastroparesis???
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03-13-2015, 08:36 AM   #3
Tesscorm
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The Boost website has a number of smoothie recipes - might be worth a try, might disguise the taste of Boost (or Ensure) and she'll not only get the nutrients from the shake but also from other ingredients added to the smoothie.

My daughter uses protein powders, I can ask her favourites but, to be honest, I don't think she 'loves' the taste of any of them...
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-13-2015, 08:49 AM   #4
kimmidwife
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She won't do the NG tube. The doctor said if she loses more weight she wants her to have a GJ tube.
We have not tried orgain or carnation instant breakfast. I forgot about the carnation that is actually a good option as they taste pretty good.
03-13-2015, 08:59 AM   #5
Tesscorm
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If you try the carnation... I used to give that to my kids when they were young, just for extra nutrition, but I diluted it with milk; partly because it was filling so if they drank the entire shake, they wouldn't want to eat as much (defeating the purpose ) and also because they found it a bit thick. By diluting it, they just drank it as they would any drink with their meal.
03-13-2015, 09:56 AM   #6
crohnsinct
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Yeah when I was a kid I drank Carnation Instant Breakfast. Another good one is Ovaltine. gaining weight and healthy choices.

O uses a hemp seed protein powder that tastes delish and has very little added sugar. I think she got it from Trader Joe's. I haven't obsessively googled every ingredient or run it past the nutritionist yet so not sure how clean it is.

Have you tried plumping her up with food? Some of the good for you high fat foods...nut butters, avocado, veggies steamed with EVOO etc. There are plenty of threads here about gaining weight with healthy foods.

I am not sure what foods would work as I think I remember something about gastroparesis and a very limited diet but I could be remembering things differently.

Why is she losing weight? Is it from uncontrolled disease? If so, I think it is a bit unfair of the doc to be threatening her as a big part is not her fault.

Is she eating?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
03-13-2015, 10:09 AM   #7
crohnsinct
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Hey Kim, just had a few minutes before my next meeting and looked gastroparesis diet up and found this:

Symptoms may be aggravated by eating greasy or rich foods, large quantities of foods with fiber—such as raw fruits and vegetables—or drinking beverages high in fat or carbonation

Not sure Carnation Instant breakfast would fit the diet. Also, depends what you mix the protein powder in with. Milk with fat might not be good. If she doesn't like the taste of Boost or Ensure I would guess a protein powder mixed with skim milk would not be palatable.

Also found this:

Eating, Diet, and Nutrition
Changing eating habits can sometimes help control the severity of gastroparesis symptoms. A health care provider may suggest eating six small meals a day instead of three large ones. If less food enters the stomach each time a person eats, the stomach may not become overly full, allowing it to empty more easily. Chewing food well, drinking noncarbonated liquids with a meal, and walking or sitting for 2 hours after a meal—instead of lying down—may assist with gastric emptying.

A health care provider may also recommend avoiding high-fat and fibrous foods. Fat naturally slows digestion and some raw vegetables and fruits are more difficult to digest than other foods. Some foods, such as oranges and broccoli, contain fibrous parts that do not digest well. People with gastroparesis should minimize their intake of large portions of these foods because the undigested parts may remain in the stomach too long. Sometimes, the undigested parts form bezoars.

When a person has severe symptoms, a liquid or puréed diet may be prescribed. As liquids tend to empty more quickly from the stomach, some people may find a puréed diet helps improve symptoms. Puréed fresh or cooked fruits and vegetables can be incorporated into shakes and soups. A health care provider may recommend a dietitian to help a person plan meals that minimize symptoms and ensure all nutritional needs are met.
03-13-2015, 10:52 AM   #8
kimmidwife
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Thanks CIC!
She is losing weight from the combo of the Crohn's and GP. She cannot really eat fruits or veggies. The doctor said to try five small meals a day.
03-13-2015, 11:21 AM   #9
my little penguin
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http://www.newhealthguide.org/Easy-To-Digest-Foods.html

Here is a list of easier to digest foods including fruits and veggies
Most standard fruits /veggies are not on the list
I know these are the ones DS tends to gravitate towards
Just didn't know why until now
03-13-2015, 12:13 PM   #10
happy
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I have just started using Garden of Life Protein Powder--it is vegan and gluten-free. It comes in a natural flavour, vanilla and chocolate.
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03-13-2015, 01:32 PM   #11
Wildmtnhoney
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Ok, I'm not a parent of dx'd kid, or a kid, or even dx'd yet myself...but I have a lot of experience with Boost personally due to these darn digestive issues, so I hope it's ok that I chime in!! What flavors Boost have you tried? I can't stand most, but I like Ensure better than boost, Strawberry is Ok if it's VERY cold, and the butter pecan is my fav - it is "sweeter" than the other flavors (I have a big sweet tooth) and the chalkiness seems reduced. These can be hard to find, but amazon seems to have them, as does my local grocer.

-- oh, and the Ensure PLUS (higher calorie) comes in these same flavors (I'm overweight now, but have needed these in the past).
03-13-2015, 01:57 PM   #12
dodie74
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My son has been on ensure plus ( powder) which I blend up with full fat milk and 4 or 5 big scoops of ice cream....it actually tastes lovely and my son drinks it no problem. One sachet is 500 cals, that's not counting the icecream. Xx
03-13-2015, 02:03 PM   #13
Maya142
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M has an NG tube but because of gastroparesis her doctor is recommending a NJ tube which she is resisting. We have found she's able to drink chocolate Neocate (HAS to be chocolate) and if she only drinks a small amount she doesn't get very nauseous. It has to be VERY cold.

She used to drink Peptamen Jr and in her opinion that is MUCH better than Neocate. I agree with MLP, it's all about frame of reference. She thought Ensure was GREAT after Peptamen and Neocate but couldn't tolerate it.

We've also figured out that if we slow the rate of the NG tube wayyyy down then she can tolerate it. If Caitlyn sips whatever she can drink over a couple hours, that might work.

We also are going to try Duocal which is a powder you put on food.

M could not tolerate Carnation Instant Breakfast (caused diarrhea) but really liked it. I think that's your best bet.
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03-13-2015, 07:22 PM   #14
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I know it sounds absurd, but I was thinking about trying infant formula, maybe to add to smoothies, or a little to rice milk to take my meds, I've had a lot of trouble with protein powder and drinks because I feel like they use inferior ingredients, but with infant formula you know they're using the best because it's for babies. I can't think of any reason it would be dangerous, strange maybe, but not unhealthy. What do you think?
03-14-2015, 09:20 PM   #15
awmom
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Hi Kim, Orgain is pretty good. If she she does not like or tolerate the ones mentioned above, you might want to try Absorb Plus. It's quite expensive, but it seems to be of fairly high quality. What I liked the most is that you add as much fat as you want depending on how she is tolerating it. Also, they have an unsweetened version which you can sweeten as you like. The chocolate was way to chocolaty so we had to mix it with vanilla. N now drinks Peptamen. He is supposed to use it as a supplement, but is using it as a meal replacement instead so he continues to be really, really thin, but he cannot eat more without it bothering him and he will not even consider an NGtube. I hope you find something she likes and she gets a few pounds on!!!
03-14-2015, 09:35 PM   #16
my little penguin
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Aw mom peptamen can be used as sole nutrition DS has done this twice now
But you have to drink enough calories to maintain weight
DS was EEN on peptamen jr this week
He gained 2.5 lbs

No amount of protein powder or shakes is going to make any difference if you don't have enough calorie intake for the day.
03-14-2015, 09:39 PM   #17
kimmidwife
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Empressentrails,
The only issue health wise I can think about with baby formula is some of the added vitamins might not be in amounts proper for adults.
But just so you know baby formula tastes really really bad. Never gave it to my kids but when I worked in the hospital years ago sometimes had to give it to the babies. One time we tasted it to see what it was like. It is bad.
03-15-2015, 08:23 PM   #18
awmom
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Wow MLP, what we wouldn't do for a 2.5 lb weight gain! He really tries to get enough calories in, he just cannot without feeling completely horrible. I am hoping to get him to Mayo or Cleveland this summer for another 2nd opinion. We've had 3 docs including one at Boston Children s and they have pretty much thrown up their hands. Now that he won't be in a dorm next fall maybe I can get him to do EEN at night.

Sorry Kim, didn't mean to take over the thread. Let us know what she ends up liking!
03-15-2015, 08:52 PM   #19
kimmidwife
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I will! We had a crazy day so we didn't get to pick up the carnation but plan to do get it tomorrow.
03-15-2015, 09:01 PM   #20
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I was raised on formula, but my kids were breastfed (and they also had a little formula). I think I tasted it once while heating it up for my kids and it wasn't terrible. I actually like the taste of almost all formulas/nutritional shakes. At the hospital we use something called Vital AF. for abdominal inflammation. I often wonder about the origins of the chemicals is formulas, because I believe natural sources of vitamins are better for our bodies. Smoothies are a great way to boost nutrition, lately I've been using a strainer to strain out the pulp and it works so well. I worry about the vitamin D added to milk because I know vitamin D is one of the few vitamins that you can overdose on, so i always use plant milks like rice/coconut/cashew. I wish there was a vegan/organic/non gmo formula out there, if not I am hoping to develop one as a project for nutrition school.
03-15-2015, 09:15 PM   #21
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Another adult chiming in - I hope that's okay!

In terms of taste the best liquid nutrition I've done was a 2 week course before my resection last summer (to reduce the chance of needing a temporary stoma) when I drank Fortisip and since I was calorie loading and aiming for 3000 calories a day I added ice cream to it.

I think the vanilla and chocolate Fortisips are possibly the best drinks I've had (much much better than Elemental 028 and probably nicer than Modulen too, although that's pretty decent) and if you add a couple of scoops of ice cream to it it tastes like a proper thick shake.
03-15-2015, 09:18 PM   #22
my little penguin
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There is a vegan organic formula
Pediasmart is organic formula
Orgain has vegan and non vegan organic supplemental nutriton
These can be found at trader joes whole foods Amazon etc....
Vitamin d needs to be consumed in very large doses to be an issue
The amount added to milk is minimal at best
Some crohnies take 5,000-10000 IU per their docs

Many different types of formula - polymeric ( boost ensure ) , semi elemental ( peptide , peptamen ) and elemental ( neocate , elecare , vital ) are used as part of EEN and have been just as effective in kids as pred for reducing the inflammation .

Kim
Hope the carnation works
Pedisure powder can is something you can add to other things which she might like the taste of maybe
03-16-2015, 03:30 AM   #23
empressentrails
 
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While the amount of vitamin D added to milk is minimal, it is one vitamin that is stored in the liver, so will accumulate in the body, we don't need much, and too much causes nausea and vomiting, already a symptom of crohns, I think too much vitamin D is a bit of a concern and seriously question why so much is added to our food.
03-16-2015, 05:13 AM   #24
CarolinAlaska
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While the amount of vitamin D added to milk is minimal, it is one vitamin that is stored in the liver, so will accumulate in the body, we don't need much, and too much causes nausea and vomiting, already a symptom of crohns, I think too much vitamin D is a bit of a concern and seriously question why so much is added to our food.
Most people above a certain latitude are vitamin D deficient. You can only get it from a few foods naturally. It mainly comes from the sun. I have tested hundreds of patients in Colorado and Alaska for vitamin D and most were deficient. It is important for mental health, immune system, strong bones, etc. What comes in milk is negligible and doesn't keep folks out of the deficient range. In my years of practice, I've only had a couple patients with toxically high vitamin D. Their symptoms were neurologic, not GI. They were taking doses > 10,000 IU/day.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-16-2015, 05:18 AM   #25
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Since there is no exact point when something becomes toxic, and from what I understand vitamin d is very hard for the body to eliminate, you cannot discount toxicity as a possible cause or contribution to any illness, healthy people eating healthy diets should not need supplementation, some do, but why force it on everyone? It has been well known for over a century or more that fat soluble vitamins and compounds stay in the body a lot longer.
03-16-2015, 08:42 AM   #26
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I have just started using Garden of Life Protein Powder--it is vegan and gluten-free. It comes in a natural flavour, vanilla and chocolate.
Hi did it help you?? can you recommend it?

Last edited by lara1234; 03-17-2015 at 01:54 AM.
03-16-2015, 10:25 AM   #27
happy
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Hi lara1234, welcome to the forum.
I am not using the powder for weight gain; I am using it at breakfast-time to get a bit more protein at that meal. I have a very specific diet due to food sensitivities, so finding a powder that I could tolerate and that had a good balance of fat, protein and carbohydrates was a challenge. ( Moat have too much fat.) This powder meets my criteria and tastes good. It helps me to feel less hungry mid-morning, so yes, I believe it is helping me. I use half a scoop with half a banana and unsweetened soy milk. Thanks for asking.
03-17-2015, 01:56 AM   #28
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Ohh, thank you for answering that I normally eat eggs for breakfast with oats to balance my protein intake. I will try supplements and let you know the result.
03-17-2015, 11:47 AM   #29
kimmidwife
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Got the vanilla carnation now just have to get her to try it!
03-17-2015, 01:16 PM   #30
CarolinAlaska
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Jaedyn likes the vanilla Carnation best. Hope she likes it.
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