New to forum, overwhelmed with information! Dietary advice?

First, let me say thanks to everyone who has been posting here. I have occasionally lurked for information but had not yet signed up until this week.

I was diagnosed with ulcerative colitis around 2010, if my memory serves me correctly. I probably had symptoms for a good year or two before the blood finally shook me up enough to go to the doctor about it. My GI prescribed Asacol, which did nothing for me.

My first reaction was to look at my diet. I tried SCD, which sort of helped. I did a juice fast, I tried eating more fruits and veggies, and I'm sure I tried a couple other diets before I went gluten free, and that definitely helped. I was mostly in remission until about 2 years ago. I think stress may have triggered the relapse, I don't know.

After at least 6 months of denial that my condition was back, I started trying dietary changes again. I tried FODMAPS, AIP, and nothing seemed quite right. I eventually went to a Naturopath who ran a bunch of tests, suggested some supplements, and said I am allergic to a bunch of foods. I know the allergy tests are not very reliable. She also suggested a low sulphur diet, which really overwhelmed me on top of the other diets I was trying to consider.

So months later I am not sure what to eat and not eat. I agree with my allergy test about eggs and whey. I was also advised against banana, kale, mushroom, and vanilla. The "moderate" category includes a lot more healthy veggies, including kelp, but there was one day that I ate a whole package of nori sheets (with only olive oil and sea salt) and had a reaction. So I am still unsure.

Reading on the forum this week I found there was a study involving vinegar. Of course ACV is something I have heard of people trying for their skin or health but this specifically said it helped reduce UC inflammation. A few people said it helped them, and there are some articles and websites pointing to the vinegar killing candida, which Did show up on my fecal test (though I suspect that is fairly normal). Candida also showed up on my allergy test as something to avoid, though, which gives me cause for concern.

My symptoms have been slowly progressing, and at this point I have D every morning with urgency about 5 times. Throughout the day I have it several more times, with increasing urgency. There is usually blood, mucous, gas, and no actual poop.

I am taking fish oil, glutamine, loratadine(Claritin), B vitamin, multivitamin, D with K, and as of this week a pearl probiotic. Started vinegar this week. Also taking an unrelated (?) antidepressant.

I am currently in Hungary, and all I could find here was clear apple vinegar with no "mother". I am taking a tablespoon with my glutamine morning and night as of yesterday, and I do think it is possibly helping so far.

So my questions and concerns at the moment are my diet: should I avoid the foods in the "moderate" category or not? I am out of the country for a month so foods are hard to translate and find. For now I am shooting for eating out only once a day.

I drink alcohol and brewers yeast is on my allergen list, and I do notice that beer bothers me either right away or the next day. I had white wine last night and I feel better this morning than most days.

When it comes to vinegar, there is so much information out there (good and less-trustworthy sources) that I don't know what to think. Does the vinegar "turn alkaline" in the body or is that just fancy talk for it being more alkaline than the stomach? When it gets to the colon, if it is making the area more acidic, is this good for killing the candida? Is the acid in the vinegar not actually making the colon more acidic because it is killing candida and the candida are releasing more alkaline materials as they die? Is ACV and regular vinegar essentially the same when it comes to the pH of the colon? Or do the probiotics in the raw ACV cause a different end result because of the good bacteria present? I'm completely confused. I appreciate anyone who is willing to wade through my situation and try to help.

I'm just gonna say it: diet makes no difference to most people with UC. It doesn't prevent disease progession, it doesn't "heal" your guts; in other words for most people food isn't the answer.

I'd consider the possiblity that you are one of those people. I'd also get on some medication, starting with oral and rectal mesalazine.

Diet is the mainstay of my remission along with some key supplements. As you discovered for yourself, gluten can be a problem for many of us. But everyone is different. Some find that dairy is a problem but apparently it doesn't bother me at all.

Because everyone is so different I don't believe that there is a standard diet that fits everyone. I recommend a food diary. Start out with food that you know are safe and monitor carefully anything new that seems to trigger symptoms. I admit this trial and error can be a slow meticulous process but it is worth it in the end.

For example I had been eating cruciferous veggies all my life with no problems until fairly recently. Then POW!, they have become one of my most powerful food triggers. I was in denial for a long time since everyone says broccoli, etc., is so healthy and most people here have to problem with it. You need to discover for yourself what works food wise.

I agree about rectal meds: very effective with relatively few side effects.

What you'll find is that people are clearly divided when it comes to dietary advice. Case in point, people like NiceCupofTea believe diet doesn't has anything to do with gut health and whether you eat krispy kremes all day or kale salad it won't make a difference to your UC. Then immediately after you have IAmCurious who believes diet is extremely important and fundamental to staying in remission, which I happen to agree with as I've found many correlations between foods and symptoms/flareups.

It goes to show that the best advice you can take is NO ADVICE. Be very skeptical of what everyone tells you. Don't take anyones word for it. The only exception to this is your GI doctor. There are people who also disagree that western medicine is the answer to treating UC but it is the best way to get your disease under control as you do your own research to see what else works for you outside of the pharmacy.

iPoop said...
At least we all have a vast toolbox of options to find our unique solution. UC is for life, so we have many years to find our unique solution (and it has taken years for many of us). As I cannot copy anyone else's solution, nor can they copy mine and expect perfect results!

I think you're overcomplicating it a tad, iPoop. It's not obvious from this board but meds do work for most people most of the time. However, on here you get a somewhat strange combination of the refractory-to-all conventional-treatments people (who often end up having surgery) and the vocally anti med people. It gives, I suspect, a distorted picture of UC. Not saying UC flare-ups aren't anything other than unpleasant and miserable (or worse when severe), but most folks I know with IBD outside of this board are just getting on with their lives really. They're not micro-managing their diets. They're not spending hundreds of pounds a month on alternative treatments.

I don't really buy into this thing of there being a unique solution for everyone. I mean, given a lot more time and a lot more research and a lot more knowledge, one day that might actually be true. But for now, what we do know is that meds work for most people and the ones that meds don't work for are likely to end up having surgery sooner or later.

Apparently "most" people = "all" people now.

It's missing qualifiers like that which make me think you aren't reading the rest of my posts properly either. I don't care - except when you complain to me about stuff I haven't actually said.

imagardener2 said...
And I read often here from people moving up the ladder to stronger and stronger RX because their inflammation and symptoms are just not under control.

I literally addressed this point within this topic.

If mesalazines don't work that would indicate either an intolerance (rare but does happen) or your disease is too severe for them. But give it a good few weeks because it can take a while for the meds to work.

You do know that meds never worked for me, right? That I'm on Entyvio, my third biologic, and it's not working? Or, if it is working, it's giving precious little sign of doing so. (That said I'm due my 5th infusion next week, so maybe it might help - but I'm not holding my breath.)

Like, I don't know what you think I think about meds, but whatever I think it's not that mesalazine works for 100% of people 100% of the time. A more accurate estimate would probably be that mesalazine works for 67% of people 67% of the time, although it is pure guesswork on my part. I also mentioned those who were refractory to all conventional treatments (i.e. meds) in my previous post.

Post Edited (NiceCupOfTea) : 6/3/2017 1:30:00 AM (GMT-6)

NiceCupOfTea said...
and the vocally anti med people.

What anti-med people? Yes there may be some short term posters like Nato9 who may be considered anti-med but these guys are generally put down and quickly run out of the forum. Veterans of this forum who recommend diet modification, such as myself, are not anti-med.

All we are saying is that if milder meds are losing their potency then we recommend giving diet a chance before, as Ima said, “I read often here from people moving up the ladder to stronger and stronger RX because their inflammation and symptoms are just not under control”. But we have no problem with someone using those expensive big gun meds if that is the only way to achieve remission.

imagardener2 said...
Diet is not a placebo for me and many others and it is disrespectful of you to constantly put us down when we have gotten better results with diet modification than RX gave us. I am not in denial and I do not expect to need surgery ever unless something unforeseen happens, which it can.

I'm sorry you can't be happy that others have found a solution to this miserable disease that works for them.

Amen!

I'm not anti-med by any means. If you need them you should take them. But in my case diet is not just helpful, it is the cause of my flares. When I don't go off the diet, I DO NOT get flares for years. If I go off the diet I get a flares. It's a direct correlation that has occurred countless times in me.

IntenseBloodyDiarrhea said...
First, let me say thanks to everyone who has been posting here. I have occasionally lurked for information but had not yet signed up until this week.

I was diagnosed with ulcerative colitis around 2010, if my memory serves me correctly. I probably had symptoms for a good year or two before the blood finally shook me up enough to go to the doctor about it. My GI prescribed Asacol, which did nothing for me.

My first reaction was to look at my diet. I tried SCD, which sort of helped. I did a juice fast, I tried eating more fruits and veggies, and I'm sure I tried a couple other diets before I went gluten free, and that definitely helped. I was mostly in remission until about 2 years ago. I think stress may have triggered the relapse, I don't know.

After at least 6 months of denial that my condition was back, I started trying dietary changes again. I tried FODMAPS, AIP, and nothing seemed quite right. I eventually went to a Naturopath who ran a bunch of tests, suggested some supplements, and said I am allergic to a bunch of foods. I know the allergy tests are not very reliable. She also suggested a low sulphur diet, which really overwhelmed me on top of the other diets I was trying to consider.

So months later I am not sure what to eat and not eat. I agree with my allergy test about eggs and whey. I was also advised against banana, kale, mushroom, and vanilla. The "moderate" category includes a lot more healthy veggies, including kelp, but there was one day that I ate a whole package of nori sheets (with only olive oil and sea salt) and had a reaction. So I am still unsure.

Reading on the forum this week I found there was a study involving vinegar. Of course ACV is something I have heard of people trying for their skin or health but this specifically said it helped reduce UC inflammation. A few people said it helped them, and there are some articles and websites pointing to the vinegar killing candida, which Did show up on my fecal test (though I suspect that is fairly normal). Candida also showed up on my allergy test as something to avoid, though, which gives me cause for concern.

My symptoms have been slowly progressing, and at this point I have D every morning with urgency about 5 times. Throughout the day I have it several more times, with increasing urgency. There is usually blood, mucous, gas, and no actual poop.

I am taking fish oil, glutamine, loratadine(Claritin), B vitamin, multivitamin, D with K, and as of this week a pearl probiotic. Started vinegar this week. Also taking an unrelated (?) antidepressant.

I am currently in Hungary, and all I could find here was clear apple vinegar with no "mother". I am taking a tablespoon with my glutamine morning and night as of yesterday, and I do think it is possibly helping so far.

So my questions and concerns at the moment are my diet: should I avoid the foods in the "moderate" category or not? I am out of the country for a month so foods are hard to translate and find. For now I am shooting for eating out only once a day.

I drink alcohol and brewers yeast is on my allergen list, and I do notice that beer bothers me either right away or the next day. I had white wine last night and I feel better this morning than most days.

When it comes to vinegar, there is so much information out there (good and less-trustworthy sources) that I don't know what to think. Does the vinegar "turn alkaline" in the body or is that just fancy talk for it being more alkaline than the stomach? When it gets to the colon, if it is making the area more acidic, is this good for killing the candida? Is the acid in the vinegar not actually making the colon more acidic because it is killing candida and the candida are releasing more alkaline materials as they die? Is ACV and regular vinegar essentially the same when it comes to the pH of the colon? Or do the probiotics in the raw ACV cause a different end result because of the good bacteria present? I'm completely confused. I appreciate anyone who is willing to wade through my situation and try to help.

Hey OP since you're asking specifically about diet I want to throw my 2 cents in there as I myself have experimented through trial and error with diet. I'm lucky enough that my new GI is willing to accommodate my protocol and follow up with tests. My naturopath although helpful was charging me for information and dietary regimes I could have researched myself.

I tolerate seaweed well but in my C/UC support group, many have experienced a negative rxn to it.

I actually hold Candida as a main factor in me developing UC. (If you knew my old eating habits and onset of UC symptoms you'd probably agree too lol) Best way to lower candida bacteria in the gut is to eliminate it's food source of simple sugars and reintroduce new bacteria by use of probiotics. Although personally I have not been successful with the probiotics claiming to have millions of bacteria strains. They've only resulted in increased flatulence for me. My theory is too much bacterial competition. Kimichi and Kombucha is consistent enough in my diet.

Play it safe while your food options are limited. Eliminate the bread, processed sugars, beer etc. Continue your use of vitamin supplements. Maybe introduce some herbal teas known to support gut health. Also consider including intermittent fasting to your protocol. You mentioned doing a juice fast, but if you haven't already try juicing only first thing in the mornings then slowly introducing solid foods throughout the day.

Post Edited (Natof9) : 6/4/2017 11:24:15 AM (GMT-6)

It sounds like a persistent effort you've put forth with dietary/natural measures, but please be forewarned that diet is not at the root of everyone's UC, or symptoms. I know in my case anything and everything I ate caused me miserable symptoms, but I don't believe any of it was the cause of my UC developing, progressing, or remaining active. All of us are different, and UC is pretty misunderstood, but I am of the mind that the majority of people with moderate/severe UC need drugs, and often the lowest tier (5ASAs) are not going to cut it. There is always that story of someone who says they healed their severe UC with diet, but in reality, I don't know their circumstances, I've never seen their pathology, and I personally have experienced some nearly spontaneous remissions, so I find it hard to believe it was actually the diet and not possibly just the way things went at that moment of time. What I can tell you, is that mine always came back with a vengeance. Anyways, You can make ACV with mother if you buy kombucha mushrooms (or get them in trade from somewhere) - sadly, I don't think it's going to do one iota for your UC. I used to eat and drink all kinds of fermented food items, and make my own kombucha, without any benefit to my GI system. I still drink it because I like fizzy low calorie drinks, but not for my health. I'd suggest you get yourself a good GI doctor and try to follow on a path to getting healthy.

IamCurious said...

/www.ncbi.nlm.nih.gov/pubmed/19124116
CONCLUSIONS:
Recurrent rectal bleeding can be caused by FH (food hypersensitivity) in adult patients.

You're actually helping the case of those you are disagreeing with.

The people in this study do not have UC. They have a different disease in which food causes rectal bleeding. This study in no way shows that the rectal bleeding in people with UC is related to food. Instead it shows that people who get rectal bleeding that is clearly food-related have a different disease.

It could very well be that somebody like brucen has lymphonodular hyperplasia and not UC, or he may have lymphonodular hyperplasia (or some other similar condition) in addition to having UC.

IamCurious said...
I get that diet did not affect you individually, but I really don't understand how you guys can ignore the overwhelming firsthand accounts from quite a few posters here that diet is crucial for their remission

The same way you seem able to ignore the overwhelming first hand accounts from quite a few posters that diet did absolutely nothing for them.

Additionally, I get additional anecdotes from the Crohn's board. As on here, there are a few glowing success stories but not exactly loads. There have also been folks who thought they were in remission on whatever diet they were following, but found out later that they weren't, sometimes the hard way.



/www.ncbi.nlm.nih.gov/pubmed/19124116

Lymphonodular hyperplasia isn't UC.


/www.ncbi.nlm.nih.gov/pubmed/27194533

I'd like to know what this "key" role is, since researchers have been searching for the link between IBD and diet for decades and not made any significant breakthroughs. The most common dietary association with the cause of IBD is animal/dairy protein, which I remember reading about 10 years ago. A 2017 article is still saying the same thing.

/www.ncbi.nlm.nih.gov/pubmed/27793606

On the other hand you could always try eating potatoes and legumes: /www.ncbi.nlm.nih.gov/pubmed/28550491

I had to laugh a bit at that second link, because I have a half Irish mother and I ate potatoes practically every day for years.

Post Edited (NiceCupOfTea) : 6/4/2017 6:36:12 PM (GMT-6)

Thing is, IamC, you just seem to massively cherry-pick whichever studies most support your views about diet. And not all studies are equal.