everyone telling me different things re diet

Hi!

I've been battling c-diff + proctitis for more than a year and in that time have never been in remission. After many rounds of Vancomycin, my c-diff is finally under control—my last three tests have been negative (I'm on a six-month taper, down to one Vanco every third day). The proctitis, though, is a disaster. Currently I'm taking nine Balsalazide 750mg pills/day (three after each meal), a nightly Mesalamine enema and one Mercaptopurine (6-MP) 50mg/day. I'm also taking iron + Vitamin C (proctitis has left me anemic) and probiotics. I try to eat Greek yogurt daily. I should note that I've only been taking the 6-MP for six weeks now, and I know it can take 10-12 weeks to start working (I have the highest of hopes).

Anyhow, I have tried cutting dairy (which did absolutely nothing) and, most recently, I went strictly gluten-free for 20 days (I had a blood panel done to determine celiac disease and nothing came back to indicate that I have it). With the gluten-free diet, nothing improved except my bloating. And aside from accidents (which are humiliating, even if I only know about them) the bloating, for me, is the worst. People regularly ask if I'm pregnant (I'm not). Clothes don't fit. I feel miserable. I ate gluten yesterday and was very bloated, so I can't help but link the two. That said, cutting gluten hasn't cured me of any of my other symptoms.

My GI doctor and medical friends insist diet won't help. They claim the bloating is from the proctitis. And everything I read online contradicts the last article I read. Some swear by going gluten-free. Others cut dairy. Others are vegetarian or vegan. Others do the specific carbohydrate diet or the Paleo diet. I'm willing to do anything, but I feel like I'm not being very scientific about it and worry I'm only making these huge lifestyle changes so I can feel in control of a situation I feel like I have no control in.

So, here's my question: What diet changes did you make and did they help? And any cures aside from medicine (Gas-X seems to do nothing) to help with the severe bloating? Would love not to look seven months pregnant in my bathing suit next month ...

Thanks. :)

Hi,

Navigating the diet thing can be very overwhelming, especially if you aren't feeling well. I think rarely will a dr acknowledge that diet can contribute to or cause UC symptoms, which is annoying to say the least. You know that something is bothering you, its just tricky to tease out what it is. Have you looked into doing an elimination diet for awhile and then slowly adding back some of most common culprits(dairy, gluten,etc)? Maybe see if you can see a nutritionist for some guidance or find a book on it to guide you. You may need to avoid gluten or dairy or whatever longer to see improvement, but I think that varies for every person. I am doing a elimination diet right now at the advice of a functional medicine doctor I am seeing, I am basically on a strict version of the Paleo diet and in month or so we will slowly reintroduce some foods like soy, dairy, nuts/ beans, and eggs to see what is bothering me. I was also tested for Celiac, though there is some controversy as to whether or not the tests are accurate--there seem to be several different markers to test for that can be positive or negative. Since I am not eating grains or dairy, I am eating a lot of veggies which would definitely cause bloating if you are flaring a bit. Maybe try also keeping a journal to get a longer term picture of what your symptoms are and what you are eating. Good luck!

Quincy: Forgot to add that my GI doctor can't say I'm completely free of c-diff yet, given that I'm still on Vanco. BUT my last three tests have been negative AND she felt it was in enough of a remission that she could put me on 6mp (which she said she couldn't do when I was actively testing positive from c-diff).

Aquafly: An elimination diet and journals are great ideas, thank you. That's exactly what I need: Something more scientific and thought-out than me just trying different random diets at different times. A nutritionist also might be good for me. It would be nice to find someone who has experience with people with colitis ... I'll look into it. Thanks!

Diet modification is the reason for my remission but it doesn't work for everyone and not everyone has the same diet, so yes that can be confusing.

Start with what you know, that gluten makes you bloated. Remove gluten. Then remove another food you suspect, keep a food journal and keep notes about # of BM's and any other symptoms whether you think they are food related or not. You are the only person who can tell whether certain foods affect your UC.

In general (but you need to test yourself) the biggest problem foods are: gluten, sugar, dairy (fruits have sugar, starch that is in veggies turns into sugar in digestion). This removes a heck of a lot of the SAD (Standard American Diet) so it is hard to change what you eat without a lot of effort. Whether you want to make the effort is again up to you. Lots of people here can tell you what worked for them but it's very individualized.

I started with SCD (Specific Carbohydrate Diet) and failed at it (no improvement), years later I tried SCD again and had some success and tinkered with their diet (removing dairy including SCD yogurt and fruit and juices) and began to get better.

No GI has ever believed me when I told them that diet made me better.

Good luck. I think you have a good start already.
You mentioned steroid enemas but do you use mesalamine enemas? That is what I recommend for every night use until symptoms decrease. However when I used them without diet modification they only helped a little, with diet. mod. they helped a lot.

I also highly recommend using VSL#3 probiotic. Your GI should know about it if they are on the ball, there are medical studies that prove it's is beneficial for UC.

kymomofthree, i do not understand the whole diet mess either!

when i was diagnosed with UC at 17, i went vegetarian, later vegan, and all my symptoms went away for 4 years- no meds. i then started doing raw veganism, still felt fine, and then fruitarianism (still ate greens). i only did this because i was feeling great at the time and had read so much about how you can be a super human eating like this. well, one month into it, i start bleeding again and i've been in a flare since! this was maybe 1.5 years ago. i was in remission once during this, but the bleeding was pretty consistant. i kept telling myself that it wasn't the raw food diet, but really, i knew something just wasn't right. i have since added cooked foods back into my diet.

i use a food journal EVERY day to write down what i eat. this helps me so much to know if something is causing my cramps or other symptoms. certain foods, when combined, definitely give me gas. have you seen a food combining chart before?

http://www.themusclekitchen.com/images/FoodCombiningChart.jpg

this will help to see if you have any combination bombs! for example, most fruits should be eaten ALONE, not with nuts, yogurt, or anything but lettuce or celery. proteins, should only be eaten veggies- no grains, potatoes, anything starchy. this goes against what we were all taught about dividing our plate into 4 portions to get all the nutrients, but that way of eating is very hard on our digestive system.

Thanks for the feedback, Joanna. Will start a food journal tonight. And that Food Combining Chart is very interesting. I've never seen it. To do that, do you typically not eat meals, per se, but rather nibble on different things throughout the day? Also, how do you personally handle meals with family/friends? One of my absolute favorite things to do is gather around a table with those I love and share a delicious meal. Of course, I know, I can still do that while even on the strictest of diets (by bringing my own food, eating before and not eating at the event, etc.) but I'm just curious as to how you handle such a common activity (people always seem to gather around food).

I only use diet and am symptom free.

curcumin/turmeric-force gel caps
Salmon, olive oil
Almond butter and honey sandwiches on Harvest seeded bread
Chobani
VSL3 only if I think I need it, once every 3 months
chicken
no milk, no ice cream, no beer, no hard stuff
Boiled eggs with butter on harvest seeded bread every morning
Apple pectin pills
Elite XT enteric coated protein blend
Pure green protein ( pricey )
Lots of pure water + Ultima electrolyte powder

Pretty much anti-inflammatory diet.

For getting into remission I would also add daily VSL3#DS, pysllium seed powder, the special clay

Post Edited (aguywithuc) : 4/27/2012 3:06:47 PM (GMT-6)

mumof3 what helped me is to cut the wheat. I wasnt gluten intolerant but i felt that our western diet was packed with wheat.
So by cutting it i avoided lots of other foods like pizzas, deep fried anything, burgers, desserts, cookies, muffins... and at the end of the week avoiding those little treats makes a big difference.

I get bloated as hell with wheat but i found out lately that im ore gassy on dairies... and ive noticed something even more particular. If i eat a well aged parmeggiano reggiano (true parmesan) on a risotto i would digest it without gas. If I have fresh milk, yogourt or ice cream the gas are infernal! So mu opinion is that if you want dairies go for aged cheeses. And i understand your love of greek yogourt ! Made a mean tzatziki last month with greek yogourt, cucumbers, dill and maybe 20 gloves of garlic. I took days to fart the yogourt and burp the garlic!

I've been vegan since January, and was vegetarian before that (and before I got UC). Works for me but not everyone can handle lots of fruits and veggies. When I'm flaring, I try to eat "softer" foods, like white rice, cooked veggies, bananas, nut butters, soups, smoothies, etc.

A lot of people are helped by cutting out dairy. I would definitely cut out the soda! Soda's bad for you in general in so many ways (yes, even diet soda). Sugar really makes my UC worse so I have to watch my sugar intake.

Start keeping a food journal. Everyone reacts differently so what works for one may not work for someone else. I think food triggers the flare but does not cause the flare.

There is information about food combining at the website:
cureforulcerativecolitis.com

Might be helpful.

Are you not taking prednisone? Thiopurines are generally not used to induce remission.

fredflats: I took a corticosteroid enema for a long time (or is oral Prednisone different?) and it didn't help at all + caused lots of swelling (which I had take another medication to get rid of). My GI doc said she had a lot of patients respond well to 6MP for proctitis. Do you disagree?

zucchini: Thanks for the post. I will be as detailed as possible with the food journal. It's nice to hear from someone else who suffered from severe bloating as well (and was able to fix it via food!). Not that I want any symptoms but w/ c-diff, specifically, SO many people lose weight—and w/ the bloating, that has not been the case for me! (Other things factored in, like no longer pumping milk for twin boys, etc.). Not that I want to be nutrient deprived but seriously, if I'm going to have all these bad things happening to me a once-again flat stomach (especially after giving birth to twins) is something I'd welcome! :)

Seriously, I think what I really need to do here is stop making excuses and kick some of these things I love (coffee, red wine, cheeses, popcorn, etc.). It makes my heart hurt to think about giving them up but if I'm healthier, it's worth it.