Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis

Absolutely go gluten free and possibly lactose free.

I was just diagnosed. Diet suggestions?

Welcome to Connect, @shandar and @marciah,

You may notice that I moved your discussion and combined it with this existing discussion on lymphocytic colitis as I thought it would be beneficial for you to be introduced to other members with similar experiences.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I’m tagging Mentor @travelgirl as she may be able to offer more details regarding diet and nutrition for this condition. I’d also like you to meet @ekoltun6, @marymar, @cindyc, @helengee, @mjgarr, @mkzpony, @kristimotch, @ediep, @karne, @mpratto, who have all shared their experiences and insights about lymphocytic colitis

@shandar, @marciah, may I ask if you could share some more details? How are you managing the symptoms at present? Besides diet, does medication help? I look forward to hearing more from you.

When my budesonide got too expensive, MedicareRX cut me off! I get the same thing from a compounding pharmacy for the same price the co-payment used to be.

question, i have lymphocytic colitis just diagnosed. while waiting for my visit withe the dr for a good explanation i was wondering if taking a probitic is productive?

It can be for some people. My gastroenterologist explained to me that I could try probiotics if I wanted to - they help some and make no difference to others. They seemed to help me for a while, then I saw no real differnce so I stopped taking them as they are expensive.

After daily episodes of urgent diarrhea since April, I was just diagnosed with collagenous colitis. The diagnosis came after colon lining samples were taken during a colonoscopy. I am awaiting an appointment with a Mayo dietician. Meanwhile, the doctor asked me to omit magnesium supplements and use Imodium. Also I am supposed to use a tablespoon of Metamucil in water twice a day. Will the low FODMAP diet help? Have any of you had success with it? Is it hard to follow it and stay on it? I will appreciate your comments. Thanks. elmay

@elmay - I was also diagnosed with collagenous colitis after weeks of constant diarrhea. Since it was an autoimmune disease I was told many rx drugs could cause this. Even withdrawing these drugs did not help. I was then treated for a month with methotrexate. Diarrhea disappeared. Interesting that my diet wasn’t really discussed with me. I guess my diet was fairly simple already.
I hope you will feel kind of normal soon!

How to you connect with a pharmacy in Canada? Is there a certain one you recommend?

I've had the diagnosis of Collagenous colitis for some months. I've been on Budesonide -- but kept having UTIs and antibiotics, so eventually the budesonide didn't work. Somewhere in that time, i was told to stop methotrexate, so it's interesting to hear that methotrexate helped someone! I'm now in limbo, with a Dec. appointment with Mayo, and an appointment with my PCP Tuesday Nov 3, so that will be a fraught day in a couple of ways! My digestive health people seem out of their depth. They handed me the FODMAP diet but without many instructions, so I've been following it but the diarrhea persists. Googling shows some evidence that FODMAP is not the diet doctors recommend for collagenous colitis, since it was developed for IBS. In any case, I'm finding this confusing, and am eager to hear more expert advice. Meanwhile, I do think that diet may be the best way to control my colitis -- but don't think I've been getting a good education on what that diet should be. Whew! This has been almost a year for me -- and I'm feeling depleted and worn out by trying to get through this.