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Info on Carrageenan

Thanks Tess! I talked to Johnny's GI a while ago about my concerns with carrageenan. David gave me a great research article on it and I emailed it to Johnny's GI. I am hoping he will do a study on it. Just great to get the word out. We haven't been able to completely eliminate it but we avoid when we can.
 
Thanks Tess! I talked to Jack's GI about carrageenan as well and he had not heard but was going to do some research, I'll send him the article
 

Tesscorm

Moderator
Staff member
Its such a shame that the nutritional shakes include carrageenan. Stephen's current formula does not include it but we're currently reducing the formula and he'll be completely off it by July. I was hoping to replace 'some' of the formula with a couple of Boost shakes a day but this carrageenan makes me nervous. Boost's Fruit Beverage does not include carrageenan but, to add some variety, it would be nice if there was a shake that also did NOT include it. Does anyone know of any shakes with no carrageenan?

Info on Boost's fruit drink:
http://www.boostnutrition.ca/healthcare-professionals/products/fruit-flavored-beverage-for-patients
 
Thanks Catherine, you beat me to it. I go back and forth on it as Jack has done so well on the shakes and hasn't at least so far seemed to have any problems with it we do however try and avoid it in anything else.
 
Wish they would add a strawberry flavor to one of those, seems like that is the only flavor I can get Jack to drink.
 

Tesscorm

Moderator
Staff member
Do they realize how much more difficult they make our lives when they are 'picky'!?!? :lol:

Re the peptamin - do you need a prescription or can you just buy it at drugstores, etc.?

I haven't seen Ensure Clear up here. Will look around a bit more.
 

my little penguin

Moderator
Staff member
You do not need a script
It is drinkable
Insurance may cover it ( pricey) through durable medical equipment with a script
I think they have strawberry vanilla and choc
You can order directly from nestle nutrition store
http://www.nestlenutritionstore.com/

You can order any nestle product there online

Abbott has the same thing
 
Thanks, I think I'll have his GI write a script for this one since we already have approval in place for peptide hope it wont be a big deal to switch over.
 

Tesscorm

Moderator
Staff member
MLP - our insurance never covered the formula :ymad: We were lucky that a regional medical agency did, otherwise, I'm not sure what we would've done! They 'might' continue if I had a prescription to continue with it as a supplement but I think it might be a real stretch (the ped GI's recommendation/prescription was for a 'treatment' not a nutritional supplement). His new GI doesn't think it's necessary, so not sure he'd even give me a prescription?? (Stephen's current formula is still what remains from his prescription 'repeats' from the ped GI.)

Hopefully, just a couple of shakes a day won't be too expensive!

The 'powder' shakes - I'm just hoping, once Stephen is away, that he'll remember to drink one or two shakes, expecting him to actually 'make' them :lol:, just won't happen! :ywow:

Saw on another thread, CrohnsM mentioned these two shakes that do not contain Carrageenan:

http://sveltebrand.com/products/
http://www.absorbplus.com/diet/ingredients/chart3.php
 
We're still doing Ensure right now, but I'm open to switching to something w/o carrageenan. If cost and insurance were not an issue, which brand would you use?

I've checked out all the links, but just don't know which to pick? DS prefers chocolate and it needs to be gluten free, other than that...? Looks like many brands are designed for ages 0-13 also. What about kids older than 13?

Must taste good too, of course.
 
Mehita,
Even though Jack is over 13 the GI wanted him on the pediatric formula since he needed the protein/vitamins for a growing child. I think we are going to switch to the Pepatem Jr.
 

my little penguin

Moderator
Staff member
peptamen jr is the most "drinkable" semi elemental formula
which means its easier for the absorb the nutrients than whole proteins of ENSURE etc....
Elemental ( Elecare, E028 splash, neocate) is drinkable but only in younger kids typically.
 
FYI from So Delicious Diary Free..

Yes! We are very pleased with our progress and will be introducing our refrigerated carrageenan-free coconut milk beverages in early 2014, followed by our shelf stable coconut milk beverage products. By mid-year, we should be releasing our carrageenan-free creamers and yogurts. I hope this information is helpful for you and that you stay faithful to SO Delicious Dairy Free as we make this transition. If you would like to send us your address, we would be glad to send you a coupon brochure that includes coupons for a variety of our products.



Carrageenan Free Products: www.sodeliciousdairyfree.com/files/so-delicious-carrageenan-free.pdf



Have an amazing day,

Shay





Shay Haack

Consumer Relations

Representative
 

Tesscorm

Moderator
Staff member
OMG, so glad you posted this. :)

I was just about to post more questions about carrageenan.... I read the Nutrition in IBD article that Dusty posted (in another thread) and there was discussion in there about carrageenan. NOw I'm paranoid that I'm making him drink 1-2 shakes per day and what if I'm causing damage rather helping! :( Am actually going to call S and tell him to cut it down to only 1 shake per day (at the most) while I figure out what I think...

MLP (and anyone else on peptamin) - I know you've mentioned that it took your son a while to get used to the flavour... are they really tough to drink at first, do they taste that bad? I really do believe that the nutrition S gets from the formula help quite a bit and there was that study that showed significant improvement in remicade success rates while using supplemental EN, so I'd like to continue but... I know if S doesn't like the taste, with him being away from home, it just won't happen. :(


Also, above I posted a link to Absorb Plus shakes - I googled the developer of these shakes, Jini Patel Thompson, and found some negative comments... anyway, haven't tried the shakes so I can't make any positive or negative recommendations about these shakes.
 
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my little penguin

Moderator
Staff member
Peptamen makes my tongue want to revolt.
DS took over 2 hours to drink his first one.
He drinks 2-3 a day now.
He sometimes adds maple syrup , honey or homemade Hershey's syrup ( sugar cocoa vanilla water salt).
This helps with the taste some but the aftertaste : yuck

Our plan is to keep DS on it as long as he is willing to drink it.
No plans on telling him its optional .

There are other drinks that are carragean free that are not elemental
 

Tesscorm

Moderator
Staff member
I'll have to keep looking... just posted an 'edit' re my earlier link to absorb plus shakes, the other link I'd posted, Svelte Brand will provide calories and protein but only a limited number of vitamins/minerals, the So Delicious coconut milk won't work (S doesn't like coconut flavour)... :yfaint: Ugghh... he's not AS picky as he used to be but there are still firm boundaries on what he'll eat :lol:

I'm starting to wonder if I shouldn't just give him a multi-vitamin and be done with it... The only reasons I'm hesitating is that he's at a great weight now, and that's WITH the shakes, plus that study I read about improving remicade's success rate...

I can't call the GI with this question and his next apptmt isn't until May... :confused:
 

my little penguin

Moderator
Staff member
Any nutrtional drink that is not semi elemental or elemental ,
Even diet drinks help with weight gain.
Powder versions should be less likely to have caragean .
 

Maya142

Moderator
Staff member
My daughter got used to drinking Peptamen. She still says they taste bad but she's so used to having two a day that she says she misses them if she forgets! Her GI insisted which I think helped convince her -she's also usually a very stubborn teenager.
Tesscorm - it might be worth trying to convince him to give Peptamen a try, say for a month. Maybe, like M, after a month he'll be so used to them he won't notice the taste?
I will say we used bribery when she first started drinking them ;)
 

Tesscorm

Moderator
Staff member
I'll see if I can find some Peptamin in the drugstores up here... I don't remember ever seeing them though. :( You never know... lots here say they don't like the taste of Boost and yet S has absolutely no problem with them??? (Problem with bribery now is that I don't see him! He's away at school... :lol:)

Also going to try the Vega-all-in-One, there's a GNC across the street from my work... going to check if they have those shakes there.
 

my little penguin

Moderator
Staff member
Peptamen typically needs to be shipped direct from the manufacturer ( nestle store )
Or through a durable medical equipment supplier .
It is a medical food so not sold in regular stores at least in the us .
You don't need a script for it in the us.
Good luck
 

crohnsinct

Well-known member
I agree with MLP...if he is symptom free and doing well and it is just for added nutrition and such any supplemental shake should do. Have you looked in Whole Foods? I know they have a couple of lines and perhaps those are C free. What about Ovaltine or Carnation Instant Breakfast? Not exactly EEN formulas so not sure about them increasing the lifeline of Remicade but they are along the same lines.
 

Tesscorm

Moderator
Staff member
I agree that a polymeric formula shud be fine. But I do want one that has equivalent (or close to) the same levels of vitamins/minerals that boost or ensure have.

Just reAlized MLP mentioned the vegan... 'Powder' - going to see if they hv actual shakes. Annoying that they add this to their shakes!!! Will check the carnation shakes too.
 
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Catherine

Moderator
Carrageenan is added to stop the liquid and solids from separating.

This is why the powders are more likely to be carrageenan free.
 
I am wondering if anyone has used a tube feeding formula or supplement for years only to learn it has carrageenan in it. I think it may have contributed to my son needing a small bowel resection.
 
Grace's formula (E028 Splash) doesn't have it but her coconut and almond milk did.
She used to drink lots of that before her dx.

Now she drinks rice milk. At least with that I just have to worry about arsenic.:ybatty:

But I don't believe that's the cause of her Ibd.
For me I blame the flu and c diff for triggering it.:ymad:
She was never the same again.:(
 

Tesscorm

Moderator
Staff member
My sons formula came as a powder so I don't think it had carrageenan?? I don't know a lot abt this but I hv read that there is some debate over 'safe' levels of carrageenan?? Although thr r studies/reports indicating the harm carrageenan can do, I believe I e read that, at least some of the reports may hv been based on levels that wud not normally be ingested. But, as I said, I certainly don't know enough abt it to really know. :(. I do know it seemed almost impossible to avoid and my thought is that my son gains more benefits from drinking boost shakes than the harm he wud get from the carrageenan. But wud certainly be interested to hear what others think.
 
I do not blame carrageenan for his Crohn's - but for increasing inflammation and causing ulceration and damage in his small intestine. It is a known inflammatory agent that causes ulcers in lab animals. He was on tube feeds for about 3 years so daily dose of several cans of formula that had carrageenan.
 

Tesscorm

Moderator
Staff member
I wish I knew more re 'how much is too much'. The constant exposure wAs my concern as well. It was a while back when I looked into this but, if I remember correctly, I came to the conclusion that I wudn't be able to eliminate it so it didn't make sense to remove something that was providing a benefit. However, given S's age, I hv limited control over what he eats or drinks - when he was younger, it wudve been easier to minimize it from his diet.

However, I do worry that even an acceptable amount of something (cud be carrageenan, NSAIDs, etc) cud impact someone susceptible to crohns much more than the avg person.

(Ughh, where was this thread yesterday?, before we went to the GI - this was something else I'd meant to ask abt! :ybatty:)
 
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