What is your experience with carrageenan on meds and how much do you have to eat to have a problem?

[UCmom]

I have a 5 y.o. son with UC. During his first and, so far, only flare I swear I could stop and start the bleeding very predictably within hours with a few diet changes (soy, eggs, dairy, wheat). I eventually decided it was likely dairy but possibly wheat too. At that time he was only on prednisone. A couple months later my infant started to bleed and the docs said cut out dairy as she's mainly breastfed and that's the likely cause. Eventually we realized it was actually on certain formula causing the blood and mucous and, when I compared and researched ingredients, the only thing I could find that might do it was carrageenan. This makes me wonder if that's not also at least a part of my son's problem too. All of the foods that were in the wheat and dairy category when he was flaring that caused bleeding had carrageenan in them! Anyhow, my main question is if you can't tolerate carrageenan do any of the meds mask the problem? If I give him carrageenan now while he's on pentasa or 6 MP should I expect nothing regardless of whether he has an issue with it? Or will he flare no matter what if he does eat it and has an intolerance/allergy? Also, how much do you find you have to eat to notice a problem and how long does it take to manifest itself?

 

[Trevor]

I'm a poor example because I tend to make lots of changes all at once but since I found out about how horrible carrageenan is and took it out of my diet (sometimes use to drink up to a liter a day of almond milk in which it was an ingredient) I've improved markedly.

David is way more up on the science than I am but I think the basic idea is to avoid it at all costs as it's certainly doing damage no matter what meds someone is on.

 

[nogutsnoglory]

I don't think anyone can answer how much "food grade" carrageenan is safe. Personally I think none is safe and it should be removed entirely from our food supply.

Animal studies have shown minute amounts of carrageenan have caused ulcerative colitis in lab animals.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242073/pdf/ehp0109-000983.pdf

 

[David]

I would definitely avoid it at all costs. I wouldn't even buy toothpaste with it (lots of "healthy" toothpaste has it).

Here's our wiki entry on carrageenan: http://www.crohnsforum.com/wiki/Carrageenan

 

[UCmom]

Thanks for your responses everyone. I agree that none is safe but was just curious whether people have noticeable problems after ingesting trace amounts and whether people continue to experience those problems while on meds. I'm just trying to determine if my son may indeed have the allergy as I suspect. Regardless, I don't plan on purposely feeding anyone in my family carrageenan. That would be easier if Trader Joe's would stop putting it into everything!!

 

[kel]

I have always thought that drinking those ensure, boost, etc. type shakes just made me sicker. I did not know about carrageenan until this year unfortunately but since being off those shakes I am definitely doing better.

Edit: I generally would drink 2 bottles a day.

 

[UCmom]

Yes....I think that's why my son didn't respond to steroids for so long in the hospital and seemed, if anything, to bleed more....they kept giving him pediasure peptide! How can they induce Crohn's in rats with an ingredient and then put it in the medical food to help manage Crohn's in people?!