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06-03-2013, 09:17 AM   #1
Tesscorm
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Info on Carrageenan

Article in Prevention magazine:

http://www.prevention.com/food/healt...-eat-read-more

Link to petition to hav carrageenan removed from foods.

http://www.cornucopia.org/carrageenanfda/
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Tess, mom to S, 22
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
06-03-2013, 03:44 PM   #2
upsetmom
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Thanks Tess!!!
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Daughter dx CD March2012...
(aged 14)

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40mg Humira
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Dx Premature Ovarian Failure 2014



06-03-2013, 03:54 PM   #3
Johnnysmom
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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.
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
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06-03-2013, 08:20 PM   #4
Jmrogers4
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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
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-03-2013, 08:29 PM   #5
Tesscorm
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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/healthc...e-for-patients
06-03-2013, 08:39 PM   #6
Catherine
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Ensure powder is carrageenan free.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-03-2013, 08:44 PM   #7
Jennifer
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Ensure powder is carrageenan free.
Only certain flavors are (the chocolate has it). Check the label before buying. Ensure Clear doesn't have it but its expensive as hell.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-03-2013, 08:44 PM   #8
Jmrogers4
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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.
06-03-2013, 08:58 PM   #9
my little penguin
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Peptamen jr does not have carregean.
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06-03-2013, 08:59 PM   #10
Farmwife
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EO28 Splash does not have it.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
06-03-2013, 08:59 PM   #11
my little penguin
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http://www.naturesone.com/pediasmart...dient-quality/

No carregean
06-03-2013, 09:06 PM   #12
Jmrogers4
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Wish they would add a strawberry flavor to one of those, seems like that is the only flavor I can get Jack to drink.
06-03-2013, 09:11 PM   #13
Tesscorm
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Do they realize how much more difficult they make our lives when they are 'picky'!?!?

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.
06-03-2013, 09:21 PM   #14
my little penguin
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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
06-03-2013, 09:25 PM   #15
my little penguin
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http://www.nestlenutritionstore.com/...=pediatric.2.2

Regular peptamen. Jr ( strawberry . )
06-03-2013, 10:44 PM   #16
Jmrogers4
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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.
06-03-2013, 11:01 PM   #17
Catherine
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The chocolate ensure powder I have doesn't list carrageenan.
06-04-2013, 12:26 AM   #18
Twiggy930
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Modulen does not have carrageenan.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
06-04-2013, 08:43 AM   #19
Tesscorm
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MLP - our insurance never covered the formula 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 , just won't happen!

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
06-04-2013, 12:16 PM   #20
Mehita
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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.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-04-2013, 01:40 PM   #21
Jmrogers4
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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.
06-04-2013, 05:36 PM   #22
my little penguin
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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.
09-17-2013, 05:36 PM   #23
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Thanks for the info.

I signed the petition to ban carrageenan (for whatever its worth).

The cornucopia site also has an extensive listing of Carrageenan free, organic foods sold commercially that some might find helpful - http://www.cornucopia.org/shopping-g...h-carrageenan/
02-05-2014, 01:23 PM   #24
greypup
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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: http://www.sodeliciousdairyfree.com/...eenan-free.pdf



Have an amazing day,

Shay





Shay Haack

Consumer Relations

Representative
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Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
02-05-2014, 08:03 PM   #25
Tesscorm
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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.

Last edited by Tesscorm; 02-05-2014 at 08:24 PM.
02-05-2014, 08:24 PM   #26
my little penguin
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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
02-05-2014, 08:33 PM   #27
Tesscorm
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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)... Ugghh... he's not AS picky as he used to be but there are still firm boundaries on what he'll eat

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...
02-05-2014, 08:34 PM   #28
my little penguin
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http://m.gnc.com/Vega-One-All-In-One...uctId=12895335

Make this one from powder not sure on the taste .
Ensure vanilla in the can is caragean free I think

You best taste will be from whole polymer formulas .
02-05-2014, 08:49 PM   #29
Tesscorm
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And, just to be sure, the polymeric formulas are Boost, Ensure, Svelte, etc., right?
02-05-2014, 08:51 PM   #30
my little penguin
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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 .
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