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8/27/14 1:41 P

I've had ulcerative colitis since 1997. From all I have read, doctors don't know what causes the disease only that it's an autoimmune disease which makes the body attack itself. I find it hopeful that research is now focusing on DNA markers and this may our best option for more effective treatment methods and perhaps a cure.

It should be noted that IBS and IBD are very different disorders. If we are talking about ulcerative colitis and Crohns, the correct term is IBD (inflammatory bowel disease) and not IBS (irritable bowel syndrome).

CAMEOSUN SparkPoints: (86,617)
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10/28/13 9:02 A

Thanks for this information everyone. I am still researching it. Hadn't talked to son in a few days and assumed all was well. Not ! Dr. put him back on 40 mg. Prednisone as the Uceris wasn't working. He's lost 15#. He can't afford to lose any weight - way too thin. He's going to see his doctor tomorrow, because the Prednisone isn't working.

The Carrageenan ingredient sounds very toxic & dangerous & it is in so many "natural" products. Especially the non-dairy milk products. From what I have read, I think that Carrageenan should be banned. It sounds like many people are getting IBS from it. Just found out Tom's of Maine toothpaste has Carrageenan in it from reading a "comment" on this article:

While I was at the store last night I looked on some containers for the ingredient. It was clearly listed on the Horizon non-dairy milk products. We drink Rice Dream (have for years) and it is not listed on there. Although, some of the websites have it on their "list" for products that have Carrageenan. Are companies required to list it or not on the package?

Edited by: CAMEOSUN at: 10/28/2013 (09:19)
10/26/13 11:52 A

For some intestional conditions, especially IBS; the FODMAP diet has been shown to provide great assistance:

I would encourage working with your doctor or Registered Dietitian when investigating this approach.

Your SP Registered Dietitian

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10/26/13 11:47 A

I've heard about the concern with carrageenan before. As a result I do what I can to stay away from eating it. Not always easy to do as carrageenan is surprisingly added to many foods.

An UC and IBD web sight you might find helpful is Dr. Hunter's. Over the years he has conducted studies looking into the roll that foods play with IBD conditions such as UC. His informative sight can be viewed at:

10/24/13 8:53 P

I have a variety of diagnosis, and I am learning that knowledge is power but you have to have acceptance first.

CARADAWN Posts: 1,955
10/24/13 8:20 A

HANGON: I am sorry if I sounded harsh in my response; I promise that was not my intentions emoticon

I only meant that it can be a waste of time and energy (especially energy) to try and find the reason why you have UC. I did not mean that it is a waste of time to find the specific foods that may trigger a flare. Actually, I think that is a very good use of time. I just hear of so many people trying to blame it on this or that and to me that doesn't get you anywhere. I think of it like this: You unfortunately have been diagnosed so it is time to move forward and find the best way for you (and your family) to manage this disease so you are in control of your life instead of it being in control of you. I try to focus on what I can change (diet for example) and not what I can't (the fact that I have UC). Personally, large amounts of dairy (ice cream in particular) can upset my stomach for a good 24 hours so I try to eat it sparingly, same with fried foods. I am glad you have found the foods that trigger issues for you and hope that you are able to avoid them and stay well in the future.

FERNCREST Posts: 1,027
10/24/13 8:09 A

What brand of almond milk? Maybe that's was messing up my stomach. Wow

10/24/13 1:21 A

I also have UC and I don't understand how it is a waste of time to search for causes/triggers for this awful disease. The available medications have nasty side effects and often become ineffective after extended periods of use, so what is the harm in exploring natural ways to manage the symptoms? Currently for me, that includes avoiding all wheat and artificial sweeteners. I don't need a researcher in a lab to tell me whether these foods trigger flare-ups when I have my own ongoing n=1 experiment every day that indicates that yes, in my case, they definitely do. (BTW, I discovered this when I was in the middle of a particularly nasty and persistent flare; out of desperation, I put myself on an elimination diet where I started with just brown rice and gradually added other foods back in. I kept a detailed diary of everything I ate, how I felt, and what my symptoms were. I would highly recommend this to anyone dealing with any kind of autoimmune diseases as it has literally been life-changing for me, and the worst that could happen is learning diet is not a factor in some cases).

So anyways, back to the question at hand. Years ago I bought a carton of almond milk and, although I enjoyed the taste, I began having horrible gi issues lasting several days which made for a very uncomfortable weekend ski trip with my friends. At the time, I thought I must have been having some kind of reaction to the almonds. Years later, my friend switched to a vegan diet and her husband started to complain of digestive problems when drinking the same brand of almond milk that had troubled me. She began to research and learned about carrageenan and eliminated all brands that contain it from her kitchen, and now he is tolerating the same foods minus the additive with no ill effects. So yeah, I would definitely consider it an ingredient to avoid and a simple google search will tell you which brands do and don't contain it.

CARADAWN Posts: 1,955
10/23/13 2:02 P

I have UC and although it may be nice to "blame" it on something there just isn't enough research out there to show what cuases it. I was diagnosed at 28 when I was pregnant with my first kid and my sister was diagnosed around 12, puberty. From this you could conclude that hormones trigger the disease, and there has been some research on this, but that doesn't mean hormonal changes cause the disease. UC is not a fun disease but searching for a cause is a waste of time (unless you are a medical researcher), IMO. Special diets can help tame the symptoms but the proven drugs are the best thing we have right now.

Good luck to your son and to the rest of your family in dealing with this.

10/23/13 7:17 A

It's very frustrating that our governments allow food like products on the market for consumption by the whole population. Up here in Canada unless you buy organic cream you will find that carrageenan is one of the ingredients. Stabilizers and preservatives have made their way into the food system in a big way. Food manufacters are no longer content with products that spoil fast reducing profits so they have found additives that make things last for a long time. Cream used to last only a week or two before spoiling. Now it's just insane, a carton of cream has a best before date two months away! Incidentally that is why I buy my dairy products from my local farmer. Cream Ingredient: Cream

I don't know a lot about U.C. but I would think cutting out additives and preservatives would be a good idea as well as eating a diet as close to nature as possible. There are some pretty good resources out there. Google *healing the gut* to get started. Perhaps a GAPS diet protocol might be worth looking into.

All the best to you, I hope your son feels better soon.

Edited by: JUSTEATREALFOOD at: 10/23/2013 (07:20)
CAMEOSUN SparkPoints: (86,617)
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10/23/13 2:22 A

Thanks for the links. Becky, I read an article by Dr. Weil today. Will check out the rest also. If this Carrageenan has been shown to induce U.C. symptoms in lab rats, then how can this product be used in foods? We don't know if this was the cause of our son's U.C. or not, but could have been. We have tracked our family histories and there is no one else who had/ has this. Or at least none that had ever talked about it. He is having to survive on Immunosuppressants - every time he goes off of them, then he gets a flare up. He just got married a few weeks ago. (pictures on my blog). It's so frustrating. The side effects of the immune suppressants aren't pleasant either.

10/22/13 8:18 P

This is a topic that is gathering more research data. Here is what Dr. Weil reports:

If you want to check out the actual research, go to:
Type in carrageenan and ulcerative colitis, IBS, etc

There are several rodent studies showing inflammation of the intestines with exposure to carrageenan.

Your SP Registered Dietitian

SLIMMERKIWI SparkPoints: (250,201)
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10/22/13 8:01 P

I can't comment with qualified knowledge on this, but it sounds like perhaps your son is reaching out to 'blame' something and he has honed in on this. A lot of people are prone to IBS - often there is a family history, altho' some may not realize it because a lot of people never really talked about this sort of thing because of embarrassment. You mention induced UC in lab rats - but that is a long way from proof - heaps more testing needs to be done to 'state' that as a cause.

Below is a link to WebMD that may be of help:

Note the comments re this product in food versus supplement.


CAMEOSUN SparkPoints: (86,617)
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10/22/13 7:45 P

Our son has UC (ulcerative colitis) & he says he may have gotten it from consuming Carrageenan.It's a a thickener in "most" products, incl. many "health organic products." Google for a list of them. Well, interesting when he was growing up we drank Soy milks & Rice Dream (non-dairy milks) - exclusively. Those products are on the list having that ingredient. I never knew that before. So, has anyone else heard of this or know anyone suffering from digestive issues from this additive? Of course, it is hard to link this specific ingred. but researchers used Carrageenan to "induce UC" in lab rats (or so the articles say).

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