I was DX with Collagenous Colitis in March 04. After trying a number of meds( which just did not work for me) I started a GF diet 18 months ago along with a med called Entocort. I found relief right away- took the med for 6 months (along with diet) and was able to wean off the Entocort without upsetting the apple cart.
I'm gluten free but also steer clear of soy, dairy, grains and refined sugars in order to feel on top of my game. I just simply feel better when I don't ingest them.
I'm happy to say, I'm controling my MC symptoms with diet alone. It's an awesome feeling and I'm reaping the many benefits of eating a healthy diet.
Dieting is not difficult or limiting as one would think. In fact, it's very liberating and I feel like I'm enjoying many of our planets "real foods" for the first time in my life. I'm also trying new things.
The best part of it is I no longer have D, muscle or joint pain, fatigue, depression and all that other crap.
It can be done with diet and support! There's lot's of support and experience here, that's for sure.
"Dieting is not difficult or limiting as one would think. In fact, it's very liberating and I feel like I'm enjoying many of our planets "real foods" for the first time in my life. I'm also trying new things."
In fact I enjoy food and eating more than I ever have and feel positive and energized by the whole process.
Hi, I have just found all of you and am so enamored by each of you. I have been researching help for collagenous colitis for a year now. I was DX through colonoscopy with biopsies. I have been on xifaxan an antibiotic for the colon which helped me at least get out of the house. But the minute I went off I was back where I started. I then went to a costeroid called entocort, which also helped until I went off it. Next was asacol HD which made me feel like I had the flu and all I wanted to do was sleep. The aches and pains were terrible and the cost of these meds were too much to bare. I also was on over the counter probiotic capsules throughout the last year. I never felt like they helped much. I told my doctor I had taken myself off the asacol because it was so bad that I couldn't go to work. Then she said she wanted me to try half the dose and I just couldn't let myself do it...I felt it was making me worse. I went to my health food store, I use "Mrs. Greens" to buy my plant derived coffee substitute and went over to the milk section and decided to by the Live probiotic milk after reading an article that the boxed probiotic pills/capsules are mostly all dead because of the time that lapses between the manufacturing, store shelf time, and the time you take them. I bought a "kefir" milk which tastes horrible plain. So even though I couldn't eat fruit I bought a bag of black sweet cherries and added it to the milk with sugar and ice and made a smoothie. I drank this before dinner and did not have to use the bathroom during or after dinner! I was amazed and shocked! I have drank a tall glass everyday for 6 days now. The last three days I stopped taking the xifaxan I had in reserve and have been on no meds at all! The B.M.'s are the closest they've been to normal in a full year! I feel amazing! I have energy. It sounds silly but I almost can't wait to use the bathroom to see if I'm getting even better. With a full year of canceling apmts and special occasions I had to report on this relief so that others will try it! I know everybody is different. And I suppose I am one of the luckier ones not to have a wheat or dairy intolerance. They do make a probiotic juice also for those that are lactose intolerant...though I haven't tried it. There is also a milk with fruit already mixed in. I am also very amazed that the two doctors I have been to did not suggest this live bacteria milk to me and am equally bewildered why you don't read/here about this on most of the forums or med articles. By the way I did try several probiotic yogurts that just gave me a terrible stomach ache and rumbling. So it really was a last ditch effort to try this milk...I was afraid it would make me worse. I am so glad I did! So please don't be afraid try it...I can't believe I am 100% better. Maybe its a temporary remission...but it coincided with this drink...and I'll take it...and my family can't believe how I've turned around either. Just had to let others know ...that this is working for me and maybe it will help others too. Best of luck to everyone.
Welcome to our forum. I'm glad to see that the probiotic milk was so beneficial for you, and I hope that it continues to do the job.
Most GI docs don't have a real working knowledge of how to effectively treat MC. Many of them make the same mistake that yours did, when she suggested that you reduce the dose of Asacol, and continue to take it. Well duh! If a full dose makes you sick, it doesn't take a rocket scientist to figure out that half a dose, (or less), is still going to make you sick. You definitely did the right thing by ignoring her suggestion, and not taking any more of it. To be so highly educated, GI docs can be pretty dense, at times. LOL.
The reason why your doctor didn't recommend the treatment you are using, is because virtually all GI docs believe that diet has absolutely nothing to do with inflammatory bowel diseases, and they will argue with you until they are blue in the face, that CC cannot be successfully treated by diet changes. They were trained in medical school, to write prescriptions for drugs, and by golly, that's exactly what they intend to do. LOL.
And, the reason why you don't see any glowing reports here, about kefir, is because most of us are casein intolerant. (There are some articles here, about using kefir, however, that can be found by using the search feature). Casein is the primary protein in milk, so all dairy products contain casein. In fact, only two or three of us have had any real success at all, with any probiotic products, simply because so few of us do not have adverse reactions to dairy products.
Based on your extremely fast response to the kefir, If I had to take a guess as to the source of your MC, I would surmise that it is/was due to SIBO, (Small Intestinal Bacterial Overgrowth), and the Xifaxan killed virtually all of your intestinal bacteria, but every time you stopped taking it, the "bad" bacteria would promptly take over again, and your CC would relapse. After taking an antibiotic, it's necessary to take a good priobiotic, to prevent that from happening. You just happened to be able to tolerate the kefir much better than the other probiotics, so it did the job for you. If that weren't the case, (that is, if the rifaximin had not killed all the bacteria first, you could not have had such a dramatic response to the kefir. IOW, the combination of Xifaxan and kefir, is what did the trick. It's certainly possible that the kefir could have done the job by itself, but it would have taken much longer for it to do so, without the antibiotic. Kefir is a very healthy product, by the way, for anyone who is not intolerant of it.
Several members here, have tried the same treatment that worked for you, (rifaximin in combination with a probiotic, without success. For most of us, of course, kefir is not an option, since we are very sensitive to casein.
Thank you for reporting what worked for you, because somewhere in this world, there might indeed be someone else, who might be able to use that same treatment combination, successfully. Again, welcome aboard, and I hope that your remission lasts forever.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Welcome. Thanks so much for posting your experience with meds and pro-biotic milk. It will be great if you stay in permanent remission.
From what you and Tex have said and from reading more about MC, it has become clear to me that LC and CC are collective descriptions for a number of different diseases with similar symptoms. They are named LC or CC due to the results of the biopsy test, not due to what is actually causing the disease. In your case, as Tex says, it looks like the cause was SIBO. In other cases it looks like the cause is an immune reaction to various foods and a resulting autoimmune reaction to ones own tissue transglutaminase. It is also possible that people have a number of causes that result in LC or CC, including SIBO and/or various food intolerances and/or reactions to certain medications. It all depends on what type , or combination of types, of CC or LC we have.
I just wish medical researchers and doctors could get the definitions clearer. It would stop a lot of confusion about the best way to cure these various diseases known as CC and LC and how long they will take to cure.
Again, welcome to the PP site and very best wishes, Ant
Let me just interject one thing here. Just because we have autoimmune reactions to the various proteins that we react to as a result of having M.C., doesn't mean that the food sensitivities are the actual CAUSE of the M.C.
Dr. Fine has maintained that there's probably a bacterial cause all along, so it's not an either/or situation, the sensitivities are just secondary to the bacterial cause, according to him.
For many of us, the bacterial situation corrected itself without any real intervention specifically for the SIBC, once we removed the various foods that we were sensitive to. For others, the bacterial issues seem to continue to present problems, judging by what some of the strick dieters self-report.
Could be other things, such as meds that cause continued problems as well, but there doesn't seem to be anything with good published data to back it up.
Won't it be wonderful when we know how all this really works?!
Ugh! Wondered about this--kefir. I've been taking probiotics for some time now. As many probiotics as I can. :) But it hasn't helped. I saw a mention of Kefir on this post yesterday, thought, "Oh, yeah, that's lactose free." And bought six bottles. Then realized, nope, it's 99% lactose free. So then I came back here and used the search option to find posts about the drink. Thinking I may need to toss them all now. I still don't know what I can/can't eat, but until I do, I'm trying to stay away from anything that might even potentially be a danger.
I just recently started making water kefir. The grains are meant to specifically work in water. I'm still tweaking it to get a flavor I enjoy. Plain it just tastes a bit yeasty. I may have to try a smoothie. I have also been making kombucha tea for quite a while, which I love. I use half hibiscus and half green teas. It's a lovely rose color and tastes great. Deb
Thanks so much for posting your experience with meds and pro-biotic milk. It will be great if you stay in permanent remission. 