Hi all, This is my first post. I have been reading other posts on this site for several months now and I am so amazed at the depth of knowledge and the wealth of advice available here for us who have MC. Tex, you are amazing.......thank you from the bottom of my heart for all your work and support.
Briefly, I was diagnosed with LC in april, 2008. My GI doc. put me on Prednisone (20 mg/day) for 3 weeks. But I had severe leg cramps so he took me off of that drug. I noticed little improvement with my D anyway. Then I found you wonderful folks, and ordered my Entero lab tests. Two gluten genes, no celiac gene and a casein sensivity. I immediately went GF and DF and found some improvement after 2 weeks. I then went on the popto bismal trial after reading about the positive results at the Mayo Clinic. My 8 weeks, 8 chewable tablets/day is over with today.
I have my good days and my bad like everyone else. The watery D is gone but I would not say that I am in remission. Some partially formed stools and some that are very loose. I have found that imodium a-d works fairly well when I have a particularly bad day.
I am impatient, I want to see results now, but I have learned from you that it takes time for the gut to heal. I'm 63 but have always been in good health so I will persevere and give things a chance to work.
Entocourt seems to work well for a lot of you but before I go the drug route again I want to eliminate some more food items. Currently I don't have a GI doc. My last one did not have a clue about MC. He told me I could not be gluten sensitive because my blood tests were negative. We all know the story behind that type of thinking all to well.
Well I have rambled on long enough. Perhaps I can get into some specific areas of concern later on. For now, I feel confident that all my answers to my IBD will be found here. Thanks sooooo much again.
HOTROD
Simply the best
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RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Glad you've joined us at last.
Hi Hotrod,
Welcome to our online family. It's good to see you posting, and it's great to see that you've already made so much progress. You're obviously a self-starter, and I have no doubt that you'll soon be in remission, because you're willing to do what it takes to get your life back.
We appreciate the kind words, but I can't take credit for most of the work and support here - it's a joint effort, and a lot of people, (virtually all of us), have put a lot of time and effort into building this site, and nurturing it to get to where we are now. Everyone's input counts. I truly believe that the big advantage we have here, is that we're all not only willing, but eager, to learn from the people who actually have MC, namely, each other. That's something that most GI docs don't seem to be willing to do - they're not willing to listen to their patients, and learn from their mistakes, so they keep making the same mistakes. That said, there are a few GI docs out there with an open mind, and once in a while, one of us is lucky enough to find one of them. Hopefully, someday, that will be the norm, rather than the rare exception.
It's a little disappointing that the pepto treatment didn't bring remission. Often it will bring remission, and the diet will take over from there, but as we have found, we're so often different in the way that we respond to treatment. We have to keep working, until we get our program fine-tuned, so that it does what we want it to do.
Did you have Enterolab do a soy test, and the results were negative? Soy is probably the third most common intolerance, (after gluten and casein), as Joan has just discovered.
Would you mind posting your gene test results? We're trying to compile enough gene data to be able to someday possibly draw some conclusions, and maybe even be able to make certain predictions, based on gene test results. Already, we've found that those with double DQ1 genes, always have multiple intolerances, and usually have a tougher than normal experience in reaching remission.
Thanks for posting, and please keep us updated on your progress, (or lack of it). We don't like to see bad news, of course, but sometimes we learn as much from experiences with things that don't work, as we do from experiences that were positive. I hope that yours are all positive, of course, and again, welcome to the board.
Tex
P. S. I'm afraid to ask why you choose to sign your posts "HOTROD", so I won't. LOL.
Welcome to our online family. It's good to see you posting, and it's great to see that you've already made so much progress. You're obviously a self-starter, and I have no doubt that you'll soon be in remission, because you're willing to do what it takes to get your life back.
We appreciate the kind words, but I can't take credit for most of the work and support here - it's a joint effort, and a lot of people, (virtually all of us), have put a lot of time and effort into building this site, and nurturing it to get to where we are now. Everyone's input counts. I truly believe that the big advantage we have here, is that we're all not only willing, but eager, to learn from the people who actually have MC, namely, each other. That's something that most GI docs don't seem to be willing to do - they're not willing to listen to their patients, and learn from their mistakes, so they keep making the same mistakes. That said, there are a few GI docs out there with an open mind, and once in a while, one of us is lucky enough to find one of them. Hopefully, someday, that will be the norm, rather than the rare exception.
It's a little disappointing that the pepto treatment didn't bring remission. Often it will bring remission, and the diet will take over from there, but as we have found, we're so often different in the way that we respond to treatment. We have to keep working, until we get our program fine-tuned, so that it does what we want it to do.
Did you have Enterolab do a soy test, and the results were negative? Soy is probably the third most common intolerance, (after gluten and casein), as Joan has just discovered.
Would you mind posting your gene test results? We're trying to compile enough gene data to be able to someday possibly draw some conclusions, and maybe even be able to make certain predictions, based on gene test results. Already, we've found that those with double DQ1 genes, always have multiple intolerances, and usually have a tougher than normal experience in reaching remission.
Thanks for posting, and please keep us updated on your progress, (or lack of it). We don't like to see bad news, of course, but sometimes we learn as much from experiences with things that don't work, as we do from experiences that were positive. I hope that yours are all positive, of course, and again, welcome to the board.
Tex
P. S. I'm afraid to ask why you choose to sign your posts "HOTROD", so I won't. LOL.
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.
an absolute genius.. 
