Hi folks!
I said hi to the group a few weeks ago when looking for more info on LC. I have been on 9mg/day of Entocort for 3 weeks now and have significant reduction in trips per day. Now maybe 3x in am within 1st 2 hours after I wake and 1-2x in the evening. I have not modified diet. My GI doc admits they have little success with this issue and is willing for me to experiment. My bloodwork was negative for celiac, but I do not have specific results with the numbers. Should I try to get that? Not certain how to proceed and when to expect return of normal BM.
This just happened around March 15th or so with no apparent trigger. I never noticed any kind of dairy intolerance before and have not had GI issues in the past except for upper GI problems associated with NSAIDs for back problems 10-12 years ago, but I have not taken NSAIDs regularly for some time. I did have to use Nexium and over time the hiatal hernia, Barretts and GERD all improved to the point that there is little residual evidence of the prior issues. Is the NSAID connection based on recent use, or just any use over time?
At what point should I get really finicky about food? My wife is Vietnamese and we eat lots of fresh fruit and vegetables. She is a vegetarian and as a result I eat a lot less meat, foul or fish than in years past. And because of osteoporosis (result of tx for back problems) and vitamin D deficiency (and I live in FL & walk my dog for an hour or so a day!!!) I started drinking milk again a few years ago. I really hate the idea of cutting out fresh fruit & veg!!!
Bob
Just Checking Back In
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Bob,
It's good to see an update, and that the Entocort is working. After 3 weeks of treatment, you could see remission any day now. If, after another month, you are not down to 1 or 2 normal BMs per day, and you want to get there, you will probably have to cut gluten, (and maybe dairy), out of your diet. There is no reason to cut all fruits and veggies out of your diet - just raw fruits and vegetables. Many vegetables are "safe", as long as they are thoroughly cooked. Some fruits may be "safely" eaten, if they are peeled, and thoroughly cooked. Some of us can tolerate bananas, raw, as long as we don't overdo them.
This is assuming that you are willing to take Entocort for the rest of your life, (at a reduced dosage rate). If you expect to control your symptoms by diet alone, then all gluten and dairy, (and probably all products containing soy), should already be gone from your diet, otherwise, when you discontinue the Entocort, you will be right back where you started. IOW, there is no cure for MC. With few rare exceptions, we have to either take meds, or follow a diet, for the rest of our lives, once we are diagnosed with MC.
There is no point in being concerned about the actual numbers from a celiac blood test. That test is meaningless for anyone who is gluten sensitive, but does not have fully-developed celiac disease. That test result will always be negative, if you are not a celiac.
IMO, (and this is indeed just my opinion, because I don't believe that any research has been done on this), The use of NSAIDs in the distant past is probably of no concern. Using them now, though, would probably result in a reaction, but that isn't necessarily true for everyone with MC.
You should "get really finicky about food", within the next few weeks or so, if at that point, you do not have the control of your symptoms, that you would like to have. Or, if you don't plan to take Entocort for the rest of your life, then you should have already started your diet, because it takes quite a while for the diet to take effect, due to the healing time required for the gut. Trust me, no one likes to make drastic changes to their diet, but we do what we have to do, to attain remission, and hopefully later, after we have been in remission for a year or so, we can add some of those foods back into our diet, (except for gluten and dairy, of course). If you need to cut out dairy, there are milk substitutes that you may want to consider.
Good luck with your program, and please keep us updated on your progress.
Tex
It's good to see an update, and that the Entocort is working. After 3 weeks of treatment, you could see remission any day now. If, after another month, you are not down to 1 or 2 normal BMs per day, and you want to get there, you will probably have to cut gluten, (and maybe dairy), out of your diet. There is no reason to cut all fruits and veggies out of your diet - just raw fruits and vegetables. Many vegetables are "safe", as long as they are thoroughly cooked. Some fruits may be "safely" eaten, if they are peeled, and thoroughly cooked. Some of us can tolerate bananas, raw, as long as we don't overdo them.
This is assuming that you are willing to take Entocort for the rest of your life, (at a reduced dosage rate). If you expect to control your symptoms by diet alone, then all gluten and dairy, (and probably all products containing soy), should already be gone from your diet, otherwise, when you discontinue the Entocort, you will be right back where you started. IOW, there is no cure for MC. With few rare exceptions, we have to either take meds, or follow a diet, for the rest of our lives, once we are diagnosed with MC.
There is no point in being concerned about the actual numbers from a celiac blood test. That test is meaningless for anyone who is gluten sensitive, but does not have fully-developed celiac disease. That test result will always be negative, if you are not a celiac.
IMO, (and this is indeed just my opinion, because I don't believe that any research has been done on this), The use of NSAIDs in the distant past is probably of no concern. Using them now, though, would probably result in a reaction, but that isn't necessarily true for everyone with MC.
You should "get really finicky about food", within the next few weeks or so, if at that point, you do not have the control of your symptoms, that you would like to have. Or, if you don't plan to take Entocort for the rest of your life, then you should have already started your diet, because it takes quite a while for the diet to take effect, due to the healing time required for the gut. Trust me, no one likes to make drastic changes to their diet, but we do what we have to do, to attain remission, and hopefully later, after we have been in remission for a year or so, we can add some of those foods back into our diet, (except for gluten and dairy, of course). If you need to cut out dairy, there are milk substitutes that you may want to consider.
Good luck with your program, and please keep us updated on your progress.
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.