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Thanks to everyone who responded to my post on lymphocytic/microscopic colitis. I had many wonderful responses and will summarize here:

• “I , too, have had 30 years of guesswork about this problem and had to deal with the diarrhea and all of the other problems until this last few months when after a colonoscopy and other tests it was confirmed this to be the case .  I use entocort off and on plus Sulcrate Suspension plus and now on the GF diet to the best of my ability. One can never be entirely free of the symptoms but I have tried almost everything and am now finding I am getting the best result from using a soluble fibre called acacia fibre. I have to order it from the internet and have had to take it for 5 months before I had results.”

• “I have occasional bouts, even now, where I must go back on entocort.”

• “My celiac dau. And I have had good experience controlling diarrhea by taking a strong, diverse blend probiotic like iFLORA from www.sedonalabs.com (grown on milk) or Megaflora which is sold by Megafoods in health food stores and Whole Foods.  You can order it on the internet also.  Megaflora they told me does not have milk anywhere in the process, and so my daughter tolerates it.  Both seem to stop her diarrhea problem.  She has been gf for 5 yrs but has had bowel overgrowth problems.  Did they do cultures when they did your colonoscopy?  You could also try the specific carbohydrate diet at www.breakingtheviciouscycle.info which helped our daughter in combination with the good probiotics.  She is highly dairy intolerant and just taking something with milk or egg in it can trigger diarrhea.   Perhaps you have another food intolerance.”

• “Did they ever mention that the chronic ileum inflammation could be from Crohn's?  Entocort does work very well for Crohn's, and ileum inflammation is a classic finding, along with other things.  Let me know if you want more info - I have both Crohn's and Celiac.”

• “I've had it for 15 years (since I was diagnosed with celiac disease).  I take 6 Asacol per day and have been on Entocort for 4 1/2 years - my diarrhea came back really bad at that time.  The dr. put me on Entocort (3 per day) now  I'm down to one and supplement it with Metamucil.”

• “I was diagnosed with lymphocytic colitis in 1999, and with CD in 2000.  In my case, the LC appears to have been what my GI calls "colonic sprue," in other words, a manifestation of CD in the colon in addition to the damage in the small intestine.  Fortunately, both responded to the GF diet.  I have repeat biopsies in 2003.  Both the LC and the CD had resolved. 

• “Dx with ulcerative colitis 17 years ago.  Then lymphocytic about 10 and celiac 8 years ago. I suffered the horrible bouts 20-25 times a day. Nothing seemed to help until I started taking Dipentum an older drug. After a short while on that it pretty much resolved itself.  I haven't taken any meds for it in over 9 years and the gluten free diet I think helps. I do still have occasional bouts but they never last more than a day or so. Which makes me wonder if they are related to the colitis, celiac or some sort of irritable bowel. Don't know why some people seem to recover while others don't.  But the dipentum is what seemed to save me.”

• “You might be interested in what Dr. Fine at Enterolab has to say about the difference between Lymphocytic Colitis and the other kinds of colitis and his treatment recommendations (Bismuth). He has done a lot of research in this area. I find him to be always right in the dealings I have had with his lab.” http://www.finerhealth.com/Educational_Info/Microscopic_Colitis/#difference”

Thanks everyone for being a great support system!  Marge

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