Does Diet Help Control Collagenous Colitis?

Welcome to Mayo Connect @mrstree65 !

That's a lot of good nutritious food to be avoiding (plus wine, which may not be nutritious but certainly is enjoyable).

With most IBD the foods that cause problems varies between individuals. I have Crohn's disease and an ileostomy, and can eat just about everything (popcorn, raw fruit, salads) where others with the same conditions cannot.

Whatever diet modifications you make, they need to be sustainable for you! Would it be possible to get a referral to a dietician who is knowledgeable about collagenous colitis and see if an elimination diet would help you pinpoint the foods that actually bother you, instead of avoiding a lot of foods that you really enjoy?

@susanf8 I asked for a referral to dietician and was told it wasn't necessary. Both gluten and full fat dairy cause issues, but everything else has just been avoidance for fear of triggering a flare up. Prior to this, I was active but I've become a bit paranoid over the prospect of going through another 4 months of sprinting to the bathroom because I ate the wrong thing. It would be great to find cohesive, consistent information.

@mrstree65 that is certainly understandable, wanting to avoid another round of symptoms is understandable. Would your relationship with your GI support you telling them that you would like to see one anyway? Would your GP do a referral?

I was diagnosed over 10 years ago. Diet will definitely help; unfortunately, not 100%. I have been on and off Budesonide since my diagnosis. Each time I stopped, I relapsed. For me, a low-carb diet worked great. However, you need to be careful with the processed fats. I have Celiac, so gluten is a hard no for me. We are now trying a different approach with Budesonide. I'm taking 2 pills a day for 6 months, after 3 months it seems to have stopped with watery diarrhea. Please make sure you have blood work done during flare-ups. Out of the blue, my potassium dropped so fast that I needed a potassium IV. (And that was with taking potassium 2x a day and drinking electrolyte water)

@susanf8 I intend on speaking with my GP when I see him for my hypothyroidism. He is much more supportive of a proactive approach versus reactive.

@szelisk Good to know! I have regular blood work for my hypothyroidism, but will make note of this for during a flare up.

Hi, @mrstree65 - a salad and a glass of wine sound good to me, too! Glad you asked this question about diet and its effect on collagenous colitis, and if it's helpful to avoid foods such as avoiding gluten, full fat dairy, nuts, seeds, caffeine, alcohol and most raw fruits and raw vegetables.

Mayo Clinic has an article on microscopic colitis, under which fall both collagenous colitis and lymphocytic colitis:

- Microscopic colitis https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/symptoms-causes/syc-20351478

You will note that it does talk about diet on the Diagnosis and Treatment tab.

I'd like to tag others who've talked about collagenous colitis who may have input on what they have or have not done with their diets in light of their collagenous colitis diagnoses: @maryannlulu @debhammel @fdixon63 @joy4trees @pb50 @astaingegerdm @carolyne.

mrstree65 - you said that prior to this you were active, but now you are afraid of triggering another flareup by eating the wrong things. Does this mean you are mostly housebound, these days, or only go a few places?

@lisalucier thanks for the group chat.

My experience in the months leading up to a diagnosis was so horrendous I have been extremely conservative in terms of what I eat. I relapsed twice and am on maintenance dosage of Budesonide. So i am motivated to not trigger another relapse.
Mostly I eat small amounts more frequently- no bulk. Small amounts with drinks containing no caffeine. Mostly water other than my revered morning cup of half espresso, half coffee. Black. No to minimal real sugar and limited sugar substitutes.

“Kind” roughage is my term for how to eat salads. Such as softer Green leaf lettuce instead of thicker stiffer greens. As you heal and reintroduce roughage you can fine tune what works and what doesn’t. But I don't challenge much.

If I sound afraid, I am. I am fairly strident and assertive about a lot. But this brought me to a place I don’t want to frequent. So it is soft meat with very little fat. Think baked or stewed chicken or ground turkey etc. potatoes are good. Rice is good Cooked green beans or similar cooked veggies are good.

There is a frozen side dish called “lightly sauced anti oxident mixed vegetables” that I love and eat at least 2-3 times a week sometimes as a main and other times as a side. But I tolerate it well, so it’s on the trusted food list. I will put a pic of it in the post. Odd to be pushing a mixed veggies aide dish I know :)!

We are all different and even individually things you can tolerate change over time. So as much as I wish I could be helpful to someone , I can only provide broad ideas about things that may work because they work for me ... today.

I can go out to eat but brunch is easier than dinner - lots of egg dishes are well tolerated. White toast or rolls are well tolerated. I xan do dinner but would gravitate to broiled fish.

90% of the time I don’t feel like i am missing a lot. It is more a matter of this and not that.

I would love prime rib and pecan pie. But i’m not going there 🙂

Hope that is marginally helpful.

My experience with collagenous colitis happened many years ago. I was mostly housebound for weeks before diagnosis. I was treated with methotrexate for a month and have not had relapses.
I have however dealt with another autoimmune digestive issue many years since then. On and off Budesonide, prednisone etc.
I did not have a specific diet while having active collagenous colitis. Tried to keep up with fluids. I don’t eat fatty foods anyway- gallbladder gone.
Eating gluten should not have any adverse effect unless you are diagnosed with celiac disease. I drank tea instead of coffee though.

@lisalucier I'm just starting to get back into things. I had been taking an Imodium prior to leaving the house, but have gained some confidence and have stopped that. I made a home gym for myself instead of going to the gym and will be starting some volunteer work in the next few weeks. I'm intending to get back to life, but am apprehensive about triggering a flare up and the resulting side effects.