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Posted 9/5/2012 5:11 PM (GMT 0)
I'm new here and I've been curious about some posts about specialized diets with uc. How did you come about choosing to change your diet and on what information was that decision based upon? As I asked my GI if there are any dietary changes I should make because of my uc and he said there are none. He said research does not back up any specific dietary changes as either improving or making uc worse. I am not lactose intolerant; never had any issues there. Internet searches on uc seem mixed, some websites say "no diet change" and others recommend avoiding alcohol and lactose based things but it varies (seems to be no consensus among websites).

Generally, I eat fairly healthy. I shop the outside edges of the supermarket, buying just fresh dairy, vegetables, bread, and meat while avoiding middle isles of the supermarket where the processed foods are concentrated. I cook and prepare meals from recipe books at home. Although, I do enjoy the occasional guilty treat of fast food, a soda, or a beer.

I suspect, but have no proof, that spicy foods might be a bit of trouble for me so I try to avoid them when given a choice. As a guy, I like chilli. One of the recipes I cooked once since getting uc is Blackened Tilapia which includes both Paprika, Cayanne Pepper, and I did have more trouble the next morning the once. I just haven't cooked it enough to say for sure that it wasn't just a coincidence.
Posted 9/5/2012 5:30 PM (GMT 0)
I don't have to follow a specific diet plan to maintain remission -- I use mesalamine oral and rectal meds and am doing well. It sounds like we eat fairly similarly. I like to cook from scratch and avoid processed foods for the most part, but this is much more for overall health for my entire family than it is for my UC. And like you, I have treats. ;)

I don't think that all UCers need to follow a strict diet and feel your GI is right that there is not one diet plan that has been found to work across the board. But to be fair, there are also no meds that work across the board. It's all part of the crapshoot that is managing UC.

There are UCers who want to manage their UC with diet (either in conjunction with meds or alone), and that's fine. Some of them have really good sucess with it, just like some have really good success with meds. I also think that UCers who have food intolerances and/or allergies need to be extra careful to stay away from those foods. I don't have any true food allergies, but I cannot eat foods with MSG or artificial sweetners, and have been that way since long before I ever had UC. I am more careful to avoid them now, though.

So if you want to try to use/incorporate diet as a way to control your UC, that's fine. But if you don't, that's fine too. Really, what matters is finding what works for you.

Oh, and when I was flaring, spicy and super high-fiber stuff wasn't "friendly." But I'm ok with it now.
Posted 9/5/2012 6:12 PM (GMT 0)
Everyone is so individual that it is really impossible to come up with a consensus about anything, thus the conflicting information available. My doctor put me on a lactose free diet right at the very beginning but after several weeks and then resuming my regular diet I learned that in general diet doesn't effect me that much. I do try to avoid certain things. Funny you should mention it but a year of two ago my wife made some homemade chili and I must say that it was the absolutely best chili I have ever had in my life. OOOOOOOOOps. Big mistake. Over the next day was one of the worst days of my UC life. It was like a colonoscopy prep. My best advice though is to not rule anything out just due to one incident. For example, I recently made myself a turkey and swiss cheese sandwhich on a rye bun and I was immediately running to the bathroom with diarrhea. Just out of curiousity I ate the exact same thing for lunch the very next day and went about 9 hours without a bathroom trip, a looooong time for me. I often find that there is no rhyme or reason to diet at all.
Posted 9/5/2012 6:41 PM (GMT 0)
what fruit girl said -

i'm currently 90% in remission due to my diet -
Posted 9/5/2012 6:49 PM (GMT 0)
Of course your GI would say that.

I came to the decision because I have tried almost every med on the market. And I don't want surgery. And I thought: I have nothing to lose.
Posted 9/5/2012 6:57 PM (GMT 0)
i first changed my diet when i was diagnosed almost 6 years ago. i became a vegetarian and went into remission with no meds. but of course, my UC came back at 21 when i was a fruitarian and and i've changed my diet to paleo. but i'm like andrina in that i want to avoid surgery and i've tried a lot of hard meds. every GI i've had said i could eat whatever i wanted and it won't matter, but they aren't very knowledgable in nutrition so just expect that answer.
Posted 9/5/2012 7:17 PM (GMT 0)
I changed my diet (and continue to modify it if need be) using a journal.

I kept track of all foods, drinks and pills I took.
Kept track of all symptoms as well as any stress, exhaustion, lack of sleep etc.

I was able to eliminate things that bother my own gut, rather than finding a diet and forcing myself to abide by it whether I was improving or not.

I should also mention that if I'm flaring, all foods come out the other end looking bad. So the food journal was effective once I was out of a flare. And if I'm flaring I use an easier on the gut diet... No raw veggies, beans, spicy stuff... Even though these are things I can eat in moderation while not flaring.

Some of the diets seems to have some good results, but not with everyone.
Posted 9/5/2012 9:57 PM (GMT 0)
A good place to start would be getting a blood test to see if you are gluten intolerant. Some Drs recommend "bland" foods that include pasta and bread, while others say to stay away from it. At the same time, keep a food journal and track both what you eat and your reactions.

Remember that spices, additives, and other things in sauces for example can have major repercussions. Read labels and stay away from processed garbage.

Through trial and error, try to find a good balance of nutritious foods that you tolerate well. No one can say what reactions you will have. For everyone who has a "good" food, there is someone who reacts badly to that same food.

For me a few things that seem to work:

wild salmon and other fish
sushi
rice
avocado
meat
crook neck squash
split pea soup
almond milk
gluten free cereal (but Im not intolerant)
corn tortillas
cheese (wondering about milk fats, but seems ok)
spinach (cooked may give different results than raw)
chicken noodle (not mass produced stuff like campbell's which has MSG, etc)

just some suggestions.
Posted 9/5/2012 10:03 PM (GMT 0)
And just a reminder: grass fed, wild, free range, and organic are all essentially indicators of better products when it comes to meats, eggs, dairy, etc. Makes a big difference in the fatty acids in the fats that accompany these products.
Posted 9/5/2012 10:13 PM (GMT 0)

freddyj said...
A good place to start would be getting a blood test to see if you are gluten intolerant. Some Drs recommend "bland" foods that include pasta and bread, while others say to stay away from it. At the same time, keep a food journal and track both what you eat and your reactions.

Remember that spices, additives, and other things in sauces for example can have major repercussions. Read labels and stay away from processed garbage.

Through trial and error, try to find a good balance of nutritious foods that you tolerate well. No one can say what reactions you will have. For everyone who has a "good" food, there is someone who reacts badly to that same food.

For me a few things that seem to work:

wild salmon and other fish
sushi
rice
avocado
meat
crook neck squash
split pea soup
almond milk
gluten free cereal (but Im not intolerant)
corn tortillas
cheese (wondering about milk fats, but seems ok)
spinach (cooked may give different results than raw)
chicken noodle (not mass produced stuff like campbell's which has MSG, etc)

just some suggestions.

I agree and after checking with SCD I dropped the cheddar and went for the swiss cheese its half protein and half fast zero carbs. Works great. Had 2 flax muffins - giant mistake. One binds the other rinses.
Posted 9/5/2012 10:54 PM (GMT 0)
I'm new here and I've been curious about some posts about specialized diets with uc. How did you come about choosing to change your diet and on what information was that decision based upon?

My answer is like Andrina's: I'd run out of meds that I wanted to try and had nothing to lose. I drew my line at trying Remicade and Humira. Not dissing anyone elses choice in using those drugs. I just didn't want to because so far no UC meds have made an improvement in my symptoms or my inflammation as seen on c-scope. In fact inflammation increased over the years. I felt 6mp gave me a skin cancer that was painful to remove. Meds have not been my friend.

Supplements have not been my friend either and I tried almost all of them over years.
And I tried various diets over the years and got no results.
I've been tested for lactose-intolerance and celiac and the tests say I'm not.

But when I got desperate I tried diet mod. one more time and started by going gluten-free. Amazingly, bleeding stopped. So I began the Specific Carbohydrate Diet (again) but this time paid much more attention to what my gut was saying rather than what the book said. The food groups that worked for me ended up not being SCD, more like Paleo (first no dairy then low dairy). It was not easy and not quick but I got remission.

I still take meds and probiotic VSL#3 but I know for a fact that changing my diet was the reason for my remission. Protein is my friend along with low-starch veggies. Dairy is no longer feared but I am still gluten-free.

My doctor writes down what I say helped me but I can tell she is not a believer and won't be until the AMA says diet helps UC. I have my life back because I changed what I ate and my gut healed. Since healing I can now eat more different foods than before so it's not a lifetime of restricted diet.

I'm not the only one here saying they got improvement or remission through diet modification.
Posted 9/5/2012 11:41 PM (GMT 0)
What helped me -Modified GaPs diet. Most importantly food and symptom diary so I can make the right decisions as to wHat food is yay or nay. I agree that after gut has healed some u can be more free with foods.
Goodluck :)
Posted 9/5/2012 11:45 PM (GMT 0)
My GIs never recommended diet changes. My surgeon suggested gluten free, as I had a very rough time after surgery and was really sick and nothing was helping. I did it for a little while then but I was so sick at the time, I don't think anything could help at that point except time.
I changed my diet recently due to personal choices and wanting to lose weight--I didn't intend to fix the CD or anything, but it has greatly helped that
Posted 9/5/2012 11:45 PM (GMT 0)
I am still trying to research low sulfur,sulfite,thiol,nitrate/nitrite,methionine possible low arginine diet if it is possible to do.
So far low veggie oil diet seems to help me the most. Probably does not leave much to eat,but perhaps can do in stages like low sulfur see if that does anything,then low nitrate.
Old Mike
Posted 9/6/2012 2:07 PM (GMT 0)
Thanks everybody for the feedback. As this has helped me understand where people are coming from with these varying diets that I've seen in posts here (as I was initially confused about it all). Certainly, if something works for you then that's great go with it.
Posted 9/6/2012 3:18 PM (GMT 0)
Food never affected my UC. I could eat anything with no restrictions. After educating myself on this forum of the different diets out there I decided what the helk I should go gluten free, dairy free and take vsl along with slippery elm. The change threw me into the worst flare I've had in years. Maybe I didn't stick with it long enough. I'm sure I'm a rarity that way but the changes were the worst thing I could've done. Guess it was too much change at once on my body. Lesson learned.
Posted 9/6/2012 3:24 PM (GMT 0)
What I've figured out over the past two weeks, is everyone reacts to different foods, its up to you to figure out what foods a trigger points. I was laready keeping track of food and calories before this, so it wasn't hard for me to continue. I just eat what I want, and if I notice something bothering me it gets cut out. For me I've had to cut out hot sauce and soy beans, both had me feeling uncomfortable. I've also changed my diet to get a lot more organic foods, as well as some gluten free foods, I'm not going 100% with either one, but I figure it couldn't hurt. I've also added in more suppliments and vitamins. Right now it seems to be helping, and I plan to continue doing this from here on.
Posted 9/6/2012 4:19 PM (GMT 0)
It's all trial and error. Many of us can eat pretty much anything and not have it affect our UC, like me. The only things that seem to affect me significantly are sugary, processed foods like soda and candy, cookies, etc. so I avoid those. I eat a whole foods, plant-based vegan diet and it works for me. My GI did not recommend any diet changes except to say that if I find something bothers me after eating it to stop eating it. Pretty simple.
Posted 9/6/2012 8:33 PM (GMT 0)
You should take you GI to task a bit more. There is research on intolerance to specific foods (e.g., gluten, casein, lactose) that develop once the digestion-assisting bacteria population called the gut microbiota gets dysfunctional. Changing diet can definitely alleviate specific symptoms and manage the discomfort of food intolerance - even if diet does not directly affect UC. Ask him/her about this symptoms seperate from disease.

There is also evidence that things we get through diet or supplements can make a difference in UC itself. Vit D and the immune system is a big topic currently, Omega3/Omega6 balance is also linked to UC and Omegs3 diet (i.e., oily fish) or supplements may help. Even probiotics, an increasingly recognized IBD management tool, and potential therapy, is considered a medical food.

I also suspect that your doc lacks an imagination. Some foods burn on the way down and burn on the way out. If I have to poop 15 times a day, I certainly will not be eating spicy Thai food or jalapeno poppers. Spice does not cause UC or cure it, but it can definitely have a lot to do with the quality of life of a UC patient. Likewise, there is frequently bloating and gas secondary to UC due to disyregulation of the gut microbiota, or even due to some of the medications we take. IF you are worried about accidents, the last thing you want is gas. I stopped eating all beans and high-gas foods. For a time I used only a non-fermenting type of fiber supplement. Now that my rectum has healed enough that I can hold things in a bit if needed, I am trying the fermenting fiber in oat-bran, because that (fermentation byproducts) may actually help the lining of the sigmoid colon.

IF you doc has head in sand, there is no help. But, if given the chance to comment on symptoms, management of conditions secondary to UC, and/or quality of life, they might engage the topic more helpfully.

As for nutritional therapies for UC itself, the evidence is promising in some cases but not clear and coherent. The science is just not there yet in a big picture sort of way. But keep an ear out here, and maybe at the research section fo the CCFA website. If yo hear of something promising and logical with some scientific support, maybe decide to try it.
Posted 9/6/2012 9:50 PM (GMT 0)
 

I have chosen a really strict diet. I personally did not want to be on all the meds and I got scared when I read some of the posts on here. If you look back on my posts you will see how many things I have tried. I tried the raw food diet, and I really tired to convince myself it would work. Alas, It did not. I tried gluten free, then I went to low carb diet and I am still on it. I set myself out to cure myself. I did not want UC and I don't want to be labelled with it. I have managed to get myself to where I never have to use medication and I have not seen any signs of blood since last Christmas. Although, I have not used diet alone. I paid for a program and I went to see different herbalists. I have used a lot of alternative options. However, even though I have done all this I have not cured UC and if I leave the diet it will come back. I know this as I see mucus sometimes. Not every day and not a large amount, but it still exists.

 

I personally am in a bit of a dilemma. I need to make a choice and I have been putting it off. I know I cannot keep up this natural program forever, and my diet needs to be less strict. To be completely med free I think that I will have to stay on this strict diet forever. My other alternative is to go back on a low level of Mesalazine and use the SCD diet. I don't want to go back to Mesalazine because at one point it stopped working. Although, if I go back I will hope that using 50% diet and meds will keep the Mesalazine to stay in check and it will continue to work.

The one thing I know about myself is that my UC attempted to spread. I did not just have pains on the left side I had pains on the right as well. To be honest it would not surprise me that I would be one of those people who they would do surgery on, and then after the surgery they would say "Oh I am sorry you had Crohn's all a long. Sorry about that. It happens." I would not doubt this and then I just don't know what I would do.

 

Well I will post if I change my diet.

Post Edited (Hellokitty) : 9/6/2012 3:53:59 PM (GMT-6)

Posted 9/6/2012 10:26 PM (GMT 0)
hk - why do you have to give up your current natural program ?
Posted 9/7/2012 11:28 AM (GMT 0)
I tried the SCD years ago and it was a nightmare for me. I was already under weight and flaring. So the start up for SCD didn't do me much good. I was miserable, increased D, lack of energy and lost more weight. So I altered my diet to what affects me by avoidance. Diet is so very individualistic and not one person is going to respond the same as another.

My GI pretty much told me that diet has nothing to do with it. But after about 5 years, he changed his tune. He than started telling me to avoid dairy - which by then I already was. Dairy didn't exactly affect my Uc much but it increased pent up gas which was quite painful.

I'm in remission now and my diet is pretty much back to normal. But I still have to be careful of what I eat because I also have diverticular disease.
Posted 9/8/2012 9:59 AM (GMT 0)
Well i can't keep doing it forever it is really expensive.
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