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Posted 3/12/2017 10:01 PM (GMT 0)

judyjo2011 said...
@NCOT

Having lived with this for 55 years, I know how unpredictable the disease can be. Right now my flares are not extreme, no measurable bleeding, just watery and unpredictable D. Also I had two instances of what seemed like either a stomach virus or food poisoning in the past month and that has not helped. I have felt pretty carefree with diet the last few years until this flaring started. One of the downers of this disease, for me, is that it is an emotional bummer. One finally starts feeling normal and every thing is working and BOOM....it all goes away in an instant. I am trying to remind myself that in many ways I am lucky having lived with the disease and yet not having to go to surgery or some of the heavy duty meds others have needed. So it is always good for me to come here because I am not sure people without IBD can ever really get the impact it has emotionally. And it does not help that so many of us tend to cover and say "fine" even when it is not "fine."

Hi Judy, that is inspiring that you lived with the disease for 55 years and mostly well managed without having to go on stronger meds! I know you are flaring right now so that sucks. Have they ruled out bacteria/infectious causes and done stool testing for you this time since you said you had some food poisoning and a virus?

In terms of Transfats, I am on SCD diet so I have not had any transfats for over a decade (unless rarely eating something without my knowledge of it at a restaurant). Like Brucen, most of my remission with UC has been due to the SCD diet, but I need low dose meds at times as an adjunct when flaring. When I go off of SCD or eat out at a restaurant, I get mucous and blood and flare like symptoms within a few hours or 1-2 days. This has happened hundreds of times so the pattern is definitely true for me. I typically only need SCD to maintain remission, but during a flare I sometimes need to add on meds. However, I have never tried to ride out a flare with just SCD (unless it's only minor symptoms of UC) without low dose mesalamine and probiotics added so I don't know what would happen.

Post Edited (Jane974) : 3/12/2017 4:47:00 PM (GMT-6)

Posted 3/12/2017 10:34 PM (GMT 0)

NiceCupOfTea said...

@brucen36 - I'm not sure what you mean. Okay, going from your sig you flared up in 2015. Were you on the SCD diet when you flared up then?

I'm trying to explain that in my case diet is the cause of my UC flares (note I didn't say UC, even though I have been diagnosed with it). In 2015, I was eating an 'illegal' food without knowing it. Even though I do take meds (Mesalamine) just in case, I don't actually need the pills to maintain remission. I only need to be on SCD diet and then no bleeding or mucus occurs. As soon as I come off the diet (there is lag period depending on how long I've been strict SCD) I get UC flare symptoms coming back. It's like clockwork, I've tested it over 10 years time. In my case, things like stress can aggravate it, but it is the food that is the cause, which is why I have always wondered if I truly have classical UC - the doctor's say I do, but I never get random flares like many of you.

Post Edited (brucen36) : 3/12/2017 4:39:16 PM (GMT-6)

Posted 3/13/2017 12:11 AM (GMT 0)
brucen

I never get random flares either, have a confirmed UC diagnosis of 16 years, and my GI says my food intolerances are linked to my UC not IBS. I don't think oral meds do much for me and went one year taking curcumin instead of Balsalazide with no flare. Rectal meds however help when things get wonky but that rarely happens unless I go waaaay off the food wagon.

I don't understand why some forum people do not accept that we are also part of the UC spectrum and try and tell us that food does not affect UC. You and I and soynomore have valid information that can help others.

Our UC experience with diet is just as real as anyone else with UC and doctors acknowledge it now.
Posted 3/13/2017 12:20 AM (GMT 0)

imagardener2 said...
I don't understand why some forum people do not accept that we are also part of the UC spectrum and try and tell us that food does not affect UC.

Food causing symptoms is NOT the same thing as a flare-up. Millions of people have IBS without any inflammation involved. Nobody ever gets a diagnosis of IBD without there being inflammation somewhere in the gut.
Posted 3/13/2017 12:25 AM (GMT 0)
@Judyjo - Sorry 'bout that. As for Uceris, it's basically a steroid, but one which acts on the gut lining only (or almost only). It can have side-effects but they are milder, and take longer to appear, than the side-effects from pred. Between the Uceris and the increased dose of sulfasalazine, I hope you get into remission again.

I also second what Jane said about having stool samples to check for pathogens, if you haven't done so already. Particularly c. diff, which seems to be rife amongst those who get IBD.

@Bruce - I dunno what to say really. Except that yours seems a very fragile remission if just one food can make you come out of it that quickly. Personally I would rather have surgery than be on the SCD for life, but that's just me.

Post Edited (NiceCupOfTea) : 3/12/2017 6:29:27 PM (GMT-6)

Posted 3/13/2017 1:18 AM (GMT 0)

NiceCupOfTea said...
Food causing symptoms is NOT the same thing as a flare-up. Millions of people have IBS without any inflammation involved. Nobody ever gets a diagnosis of IBD without there being inflammation somewhere in the gut.

A flare-up is active inflammation. It can cause all the symptoms I've just listed, plus blood, fever (usually low-grade), weight loss, anaemia, extra-intestinal manifestations (e.g. joint pain), fissures, abscesses and fistulas (usually in Crohn's). Inflammatory markers are usually raised.

Nobody ever gets a diagnosis of IBD without there being inflammation somewhere in the gut.


Here are some of my flaring symptoms, about as bad or worse than any that I have read here. Most of your prerequisites for an IBD diagnosis are here including a CRP inflammatory reading that spiked from 0.4 to over 100. Colonoscopies with tissue samples taken for biopsy during these times confirmed that I have IBD and not IBS.

Every single one of my flares was preceded by me continuing to eat triggering foods until I ended up with a flare. When I finally learned to avoid those foods I can enjoy months or even years of flare-free remission.

You may have every right to describe your IBD but please do not tell us that we don't know what we are talking about when we describe our own IBD experiences.

IamCurious said...
Before my diagnosis I had no idea what hit me. Severe abdominal pain, drenching night sweats, and bloody diarrhea 10 to 15 times a day. I was losing 5 pounds a week for over 50 pounds. Sometimes UC can include other systemic manifestations such as serious eye inflammation, skin lesions, and crippling arthritis. I had all of these. With the arthritis I had trouble climbing stairs or making a closed fist. My blood counts were so fouled up that I was referred to an oncologist to check for lymphoma.

At first my GI tried to prescribe low level treatments. For some people Asacol works great and sustains them for years, but for me several attempts at taking 5-ASAs such as Colazal and later Asacol quickly caused nausea, severe flu-like symptoms, and pleurisy. I would even suffer a fit of nausea after inserting a Canasa suppository.

Another symptom when flaring is that for some reason my fasting blood sugar spikes from around a normal 85 mg/dl to 110-120 mg/dl, very close to the diabetic range. My GI prescribed 40 mg of prednisone. I knew my flare had to end but I was reluctant to take pred. I have diabetes in my immediate family and I was afraid pred would push me over the tipping point into full-blown diabetes. There are many accounts here of people who ended up with diabetes after taking pred for their UC. I did not want to be another casualty.

Luckily I also developed a very painful perianal abscess. I say luckily because my doctor then prescribed a three week course of Flagyl and Cipro. I looked up the side effects of Flagyl and while it did have side effects, they seemed manageable. Cipro had a black box warning and a tendency of blowing out tendons. I was 59 years old with degenerative discs in my back, the last thing I needed were blown out tendons. BTW I always had healthy discs before my UC but I think my discs quickly degenerated from ankylosing-spondylitis, which can be yet another lovely side effect of this DD.

So I set aside the Cipro and took the Flagyl alone. Along with the Flagyl I took assorted probiotics including S Boulardii because it was immune from ABX. I didn't want C Diff or any other bad guys replacing the bacteria that were getting killed by the Flagyl. That jump-started me out of my flare and into remission. Shortly after my flare ended all of my symptoms including skin lesions and arthritis quickly disappeared. My blood work was back to normal along with my elevated blood sugar and rapid heart beat. All normal. A later scope showed that my intestines were clean.

Posted 3/13/2017 1:42 AM (GMT 0)
You guyz are all actually in agreement.
As Bruce states, he is not saying that foods caused his UC, rather, that after having been diagnosed he notices that foods which he does not tolerate, will eventually cause him to flare upon continued ingestion.
Iac concurs, as does imagardener (forgive me for using you as examples). But once a flare is in full swing abx, or rectal meds or whatever are needed and no amount of food avoidance will calm that flare.

Soy's case is individually confusing. He claims that merely avoiding grains (and living well) stops his flares. It may be that he is having intolerance issues which he manages before he truly flares. However, he won't answer questions which might clarify his circumstances.

In any event, there is no doubt that repeated ingestion of foods to which people are intolerant, for people diagnosed with UC, can aggravate their condition to the point of a flare up.
Posted 3/13/2017 2:10 AM (GMT 0)

IamCurious said...
You may have every right to describe your IBD but please do not tell us that we don't know what we are talking about when we describe our own IBD experiences.

You're the ones who are putting words into my mouth and imputing things to me I never actually said. I'm sick of being attacked for opinions which are my own. If you don't agree with me, that's fine, but no need to go on at me about it. I said what I said, and nothing here has particularly changed my mind. Even if foods can trigger a flare-up, food intolerances and flare-ups are still two different things.

PS: Nowere did I even imply that anyone on this board didn't have UC. At least attack me for things I actually said and not things I didn't say.
Posted 3/13/2017 3:53 AM (GMT 0)

NiceCupOfTea said...

@Bruce - I dunno what to say really. Except that yours seems a very fragile remission if just one food can make you come out of it that quickly. Personally I would rather have surgery than be on the SCD for life, but that's just me.

Well the time it takes to come out of remission is not that fast. If I have not cheated on the diet for a very long time (say a year) and I start eating grains/rice/potatoes every day all of a sudden it could take up to a week or so for full blown bloody diarrhea. If I've been on the diet for only a few months (and when I say on diet I mean there is no blood or mucus, 1 BM per day, not fully formed), then if I cheat, it could take a week to develop full blown flare. I know you don't want to call it a flare, but not sure what to call it if it's bloody diarrhea where I have to go to the bathroom up to 10 times day depending on severity of cheating.

After all of this, each and every time if I return to SCD, all symptoms go away, where I am back to remission (this can take a couple of weeks). So frankly, I don't know what to say either. As for surgery, I just can't do it unless I have to, surgery may have some good success stories, but there are many bad outcomes too. And even in good outcomes, you never have only 1 BM per day like on SCD. Having said that, I don't claim SCD is a picnic, it is darn hard for me stay on it and I would do almost anything to get off of it, save surgery.

Post Edited (brucen36) : 3/12/2017 10:02:00 PM (GMT-6)

Posted 3/13/2017 3:59 AM (GMT 0)

ambling said...
You guyz are all actually in agreement.
As Bruce states, he is not saying that foods caused his UC, rather, that after having been diagnosed he notices that foods which he does not tolerate, will eventually cause him to flare upon continued ingestion.

Yeah the initial cause that lead to me not being able to tolerate bread, rice, potato, etc I dunno. It all started gradually from about the age of 33. And for sure SCD is not a cure, but it does prevent UC flare symptoms. Whatever the initial cause was it's somehow 'in me' and now it appears that food directly leads to the UC symptoms repeatedly.

But that I don't ever get random flares that are not directly food related does mean that at least UC symptoms have many different origins.
Posted 3/13/2017 4:46 AM (GMT 0)
I didn't mean to cause such a commotion with my post! I was reading about trans fat and I'd seen specific details in the articles that caught my eye

"Excess inflammation is believed to be among the leading drivers of many chronic, Western diseases.

This includes heart disease, metabolic syndrome, diabetes, arthritis and numerous others.

There have been three clinical trials investigating the relationship between trans fats and inflammation.

Two found that trans fats increase inflammatory markers such as IL-6 and TNF alpha when replacing other nutrients in the diet (32, 33)." it is proven that trans fat can rase inflammatory markers crucial in IBD.

I think that everyone here is so different that things effect everyone very individually which is why it's been so hard to find a cure. But when I see things like this that claim that it is found to raise the TNF-alpha in people that don't have autoimmune diseases it makes me think it might be a cause. The amount of processed food we eat in our diets has risen as steadily as the amount of people being newly diagnosed with autoimmune diseases. I believe what one of the first responses said was true that eating a lot of a specific trigger food can eventually case a flare. Maybe even the first flare. It also sounds very true that once in a flare food alone is not usually a good enough solution.for those saying that an insuffiecient immune system can be a cause I also believe it's not that simple My boyfriend is on Remicade and has said he is almost never sick except when he is flaring which leads me to believe an over active immune system could be the cause as well.

I think that dietitians and Gastroenterologists should come together and come to an agreement that both medicine and diet can play a big part in putting and keeping a patient in remission. I hope that all of the research they are doing with gut bacteria pays pff. I think at least in the cases where food can be a contributor to why someone flares they may find they will have success.

Post Edited (Aries324) : 3/12/2017 10:50:19 PM (GMT-6)

Posted 3/13/2017 11:58 AM (GMT 0)
Like ambling said in an earlier post, trans fats are being phased out of foods. In the UK food manufacturers started phasing them out years ago: I'm not sure I can buy a packet of crisps which contains trans fats anymore.

Have the rates of IBD gone down? No, they haven't. Researchers have been trying to find a link between diet and IBD for decades and have found nothing conclusive. Diet is never gonna be the magic bullet. Even when it does help (as in brucen's case), you need to have the willpower of Job to stick to it for life: something I don't have I'm afraid. My life is depressing enough - removing all sugar and grains from it would make it even more depressing.
Posted 3/13/2017 1:09 PM (GMT 0)
I'm just super sick of the reoccurring battles between no-med-people and pro-med people. I suppose at least it's been a while since the last tiff. eyes

It's a belief and many of us have very different beliefs. Nobody is going to change another's belief. The more a belief is challenged the nastier it ultimetly gets. It just causes needless bickering.

From my experience, UC is hyper-individual meaning we have wildly different solutions to our symptoms. It's just how UC is. There's nothing at all simple about UC. I'm always a proponent for a healthy skepticism about all things, and i get how we're in disbelief that a radically different treatment works so well for another.
Posted 3/13/2017 1:40 PM (GMT 0)
i'm pretty sure needless bickering has been around for a while -

and until everyone agrees that the no-med folks are, and always have been, unequivocally right, it will continue -

now lets all hold hands and type the words to Kumbaya smilewinkgrin
Posted 3/13/2017 1:46 PM (GMT 0)
Pfft
Posted 3/13/2017 4:17 PM (GMT 0)

brucen36 said...

NiceCupOfTea said...

@Bruce - I dunno what to say really. Except that yours seems a very fragile remission if just one food can make you come out of it that quickly. Personally I would rather have surgery than be on the SCD for life, but that's just me.

Well the time it takes to come out of remission is not that fast. If I have not cheated on the diet for a very long time (say a year) and I start eating grains/rice/potatoes every day all of a sudden it could take up to a week or so for full blown bloody diarrhea. If I've been on the diet for only a few months (and when I say on diet I mean there is no blood or mucus, 1 BM per day, not fully formed), then if I cheat, it could take a week to develop full blown flare. I know you don't want to call it a flare, but not sure what to call it if it's bloody diarrhea where I have to go to the bathroom up to 10 times day depending on severity of cheating.

After all of this, each and every time if I return to SCD, all symptoms go away, where I am back to remission (this can take a couple of weeks). So frankly, I don't know what to say either. As for surgery, I just can't do it unless I have to, surgery may have some good success stories, but there are many bad outcomes too. And even in good outcomes, you never have only 1 BM per day like on SCD. Having said that, I don't claim SCD is a picnic, it is darn hard for me stay on it and I would do almost anything to get off of it, save surgery.

it does sound like you have some persistent food intolerances that cause diarrhea and motility issues, and that these cause inflammation, which then bleeds. .... or the diarrhea and motility issues cause your UC to flare (possibly through dysbiosis) and the autoimmune aspect of UC causes inflammation that then bleeds.

What separates these two scenarios with identical observed symptoms is the autoimmune component. This is why the distinction is made between symptoms and UC. This is why a distinction is made in a symptom-flare-up and a UC-flare. IF there is no uptick in the autoimmune response producing inflammation, it is not UC - it is some other type of GI distress that has irritating symptoms. IMO, these fine distinctions are why we often end up feeling like someone put words in our moth, or denied we had UC. Definitions matter.

Most people just want the symptoms to go away and don't think too much about the underlying pathology. Inflammation w/o symptoms only matters for colon cancer risk. I am not sure if the colon risk differs across chronic inflammation due to food intolerances versus chronic inflammation from UC - my suspicion is it does not.
Posted 3/13/2017 4:57 PM (GMT 0)

iPoop said...
I'm just super sick of the reoccurring battles between no-med-people and pro-med people. I suppose at least it's been a while since the last tiff. eyes

I'm sick of it too, believe me, but I'm also sick of people trying to make IBD all about diet. For me IBD is an immune disorder. It's about a dysfunctional immune system that so far has attacked my guts, thyroid and eyes. And given me shingles. Diet has sod all to do with it in my case.
Posted 3/13/2017 6:31 PM (GMT 0)

DBwithUC said...

brucen36 said...

NiceCupOfTea said...

@Bruce - I dunno what to say really. Except that yours seems a very fragile remission if just one food can make you come out of it that quickly. Personally I would rather have surgery than be on the SCD for life, but that's just me.

Well the time it takes to come out of remission is not that fast. If I have not cheated on the diet for a very long time (say a year) and I start eating grains/rice/potatoes every day all of a sudden it could take up to a week or so for full blown bloody diarrhea. If I've been on the diet for only a few months (and when I say on diet I mean there is no blood or mucus, 1 BM per day, not fully formed), then if I cheat, it could take a week to develop full blown flare. I know you don't want to call it a flare, but not sure what to call it if it's bloody diarrhea where I have to go to the bathroom up to 10 times day depending on severity of cheating.

After all of this, each and every time if I return to SCD, all symptoms go away, where I am back to remission (this can take a couple of weeks). So frankly, I don't know what to say either. As for surgery, I just can't do it unless I have to, surgery may have some good success stories, but there are many bad outcomes too. And even in good outcomes, you never have only 1 BM per day like on SCD. Having said that, I don't claim SCD is a picnic, it is darn hard for me stay on it and I would do almost anything to get off of it, save surgery.

it does sound like you have some persistent food intolerances that cause diarrhea and motility issues, and that these cause inflammation, which then bleeds. .... or the diarrhea and motility issues cause your UC to flare (possibly through dysbiosis) and the autoimmune aspect of UC causes inflammation that then bleeds.

What separates these two scenarios with identical observed symptoms is the autoimmune component. This is why the distinction is made between symptoms and UC. This is why a distinction is made in a symptom-flare-up and a UC-flare. IF there is no uptick in the autoimmune response producing inflammation, it is not UC - it is some other type of GI distress that has irritating symptoms. IMO, these fine distinctions are why we often end up feeling like someone put words in our moth, or denied we had UC. Definitions matter.

Most people just want the symptoms to go away and don't think too much about the underlying pathology. Inflammation w/o symptoms only matters for colon cancer risk. I am not sure if the colon risk differs across chronic inflammation due to food intolerances versus chronic inflammation from UC - my suspicion is it does not.


maybe i've missed something the last 14 or so years, but how is autoimmune response measured ? what is the test for it ?
Posted 3/13/2017 7:48 PM (GMT 0)

iPoop said...
'm just super sick of the reoccurring battles between no-med-people and pro-med people.

This is NOT a battle between the no-med and pro-med peoples. With the possible exception of soynomore I cannot think of anyone here on this forum who advocates going without meds.

This is a recurring argument between those who believe diet modification has an obvious affect on their UC and those who feel compelled to announce to the world that food has nothing to do with UC.
Posted 3/13/2017 7:59 PM (GMT 0)

soynomore said...
maybe i've missed something the last 14 or so years, but how is autoimmune response measured ? what is the test for it ?

Ah, it's the 'UC isn't an antoimmune disease' line of attack now.

Native tissue being is attacked, not foreign bugs. That's all you really need to know about autoimmunity.

IamCurious said...
and those who feel compelled to announce to the world that food has nothing to do with UC.

lol. Pot, meet kettle.
Posted 3/13/2017 8:24 PM (GMT 0)

DBwithUC said...

it does sound like you have some persistent food intolerances that cause diarrhea and motility issues, and that these cause inflammation, which then bleeds. .... or the diarrhea and motility issues cause your UC to flare (possibly through dysbiosis) and the autoimmune aspect of UC causes inflammation that then bleeds.

What separates these two scenarios with identical observed symptoms is the autoimmune component. This is why the distinction is made between symptoms and UC. This is why a distinction is made in a symptom-flare-up and a UC-flare. IF there is no uptick in the autoimmune response producing inflammation, it is not UC - it is some other type of GI distress that has irritating symptoms. IMO, these fine distinctions are why we often end up feeling like someone put words in our moth, or denied we had UC. Definitions matter.

Most people just want the symptoms to go away and don't think too much about the underlying pathology. Inflammation w/o symptoms only matters for colon cancer risk. I am not sure if the colon risk differs across chronic inflammation due to food intolerances versus chronic inflammation from UC - my suspicion is it does not.

Yes maybe I have UC maybe I don't. But the doctors say I do because of biopsy results. And moreover my CRP test had a value of 1800 (I know it's not that accurate) when I was close to flaring (from diet cheating) and that CRP value was brought down to below 200 with mesalamine enemas.
Posted 3/13/2017 8:27 PM (GMT 0)
This is so off topic that the OP's topic of trans fat hasn't even been mentioned on this page of this discussion. Thread locked.
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