I'm a little nervous. I saw my GI Monday and he said I could begin weaning off Entocort with this timetable: 2 pills daily one week, 1 pill daily second week, then I'm done. He said some people are cured once they're off; others need to be on a maintenance dose. He's willing to prescribe whatever I need - didn't mention Prednisone, thank goodness.
Tuesday I took two pills. I also realized I had a bladder infection and began a regimen of Cipro. Took a probiotic (dairy-based) that evening
Wednesday I woke up to the alarm and felt like I had taken a sleeping pill and had a bad headache and a slight fever of 100 degrees. I stayed home from work and slept a lot. I thought I was coming down with a cold, but am wondering if I was having withdrawl symptoms. Ate some rice yogurt for the probiotics.
I've had three trips to the bathroom today, mostly solid BMs. But after dinner tonight, I'm having the old rumblings and gas and the feeling that I need to go. So far it's just gas.
I'm wondering if I am tapering the Entocort too soon. I've been on it for about 3 1/2 months. I just barely started having one BM per day. I've been GF since the end of June. I haven't eaten any dairy or eggs since my Enterolab results (but I eat Ghee regularly). Rarely, I've eaten soy protein as an ingredient in canola oil margarine and grapeseed mayonnaise. I ate some rice bread w/yeast while I was in Utah because I couldn't find any w/o it. It tasted so good compared to the rice bread I've been eating without eggs or yeast! I've been very careful to read all ingredients. I realize that I could be intolerant to other foods. I can't stand the thought of having to eliminate more foods from my very restrictive diet. I actually have been hoping I could start eating some of my intolerances using the 4-day rotation. I really miss eggs and being able to use eggs as an ingredient.
I read on the old board that you felt that 3 months on Entocort isn't long enough to heal the gut. Is that still the consensus? I'm thinking I'll try the 2X a day for a week and if I start to have problems I should go back to 3X a day. What are your opinions?
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Weaning Off Entocort
You never know what you can do until you have to do it.
Hi Gloria,
Personally, I'm a little concerned about weaning down the dosage that soon, for a case as severe as yours. Doctors are supposed to know best, of course, but I'm not sure that your doctor realizes that the fact that your restrictive diet didn't relieve your symptoms, suggests that your case is far more difficult to resolve than the average case of MC that he normally sees.
Did you see Joanna's comments in this thread?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6663
Well, your symptoms on Wednesday certainly qualify as potential corticosteroid withdrawal symptoms, but it would seem remarkable that you should experience significant withdrawal symptoms with such a small reduction in the dosage rate, after only a three and a half month treatment. Maybe you just happen to be very sensitive to it. Corticosteroid withdrawal symptoms, of course, are due to the residual suppression of the output of the adrenals, as they are re-activated, in order to resume production of the hormones that have been artificially supplied by the corticosteroid. Sometimes they are reluctant to resume production.
Also, we're all different, of course, but several of us here, who were dairy intolerant, had adverse reactions to ghee.
Here's a little known fact about yeast intolerance: It appears that yeast intolerance is a transient condition, linked to candida. The facts seem to indicate that a positive test result to a yeast antibody test, (IOW, testing positive for yeast intolerance at Enterolab, for example), will only occur if a candida overgrowth is present. This suggests that if you do not currently have a problem with candida overgrowth, you probably are not yeast intolerant, FWIW. I don't believe that this has been thoroughly researched and proven beyond a shadow of doubt, but it certainly seems to be the case, based on the evidence.
For most of us, Cipro has consistently demonstrated the ability to stop MC reactions, rather than to start them. Still, a good probiotic may be beneficial, if the dairy base does not cause problems.
Best of luck with your program.
Tex
Personally, I'm a little concerned about weaning down the dosage that soon, for a case as severe as yours. Doctors are supposed to know best, of course, but I'm not sure that your doctor realizes that the fact that your restrictive diet didn't relieve your symptoms, suggests that your case is far more difficult to resolve than the average case of MC that he normally sees.
Did you see Joanna's comments in this thread?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6663
Well, your symptoms on Wednesday certainly qualify as potential corticosteroid withdrawal symptoms, but it would seem remarkable that you should experience significant withdrawal symptoms with such a small reduction in the dosage rate, after only a three and a half month treatment. Maybe you just happen to be very sensitive to it. Corticosteroid withdrawal symptoms, of course, are due to the residual suppression of the output of the adrenals, as they are re-activated, in order to resume production of the hormones that have been artificially supplied by the corticosteroid. Sometimes they are reluctant to resume production.
Also, we're all different, of course, but several of us here, who were dairy intolerant, had adverse reactions to ghee.
Here's a little known fact about yeast intolerance: It appears that yeast intolerance is a transient condition, linked to candida. The facts seem to indicate that a positive test result to a yeast antibody test, (IOW, testing positive for yeast intolerance at Enterolab, for example), will only occur if a candida overgrowth is present. This suggests that if you do not currently have a problem with candida overgrowth, you probably are not yeast intolerant, FWIW. I don't believe that this has been thoroughly researched and proven beyond a shadow of doubt, but it certainly seems to be the case, based on the evidence.
For most of us, Cipro has consistently demonstrated the ability to stop MC reactions, rather than to start them. Still, a good probiotic may be beneficial, if the dairy base does not cause problems.
Best of luck with your program.
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.
I definitely didn't have normal BMs today. I also have a sore behind. Plus I slept only 5 hours because I had a headache and am very tired again today. I didn't give enough credit to the full dosage of Entocort. I thought my GF, SF, EF, YF and DF diet was helping me along.
My dinner may have had something to do with my relapse. I had meatloaf with Lara's oats (guaranteed to be uncontaminated by gluten). I had eaten the meatloaf once before while on the full dose of Entocort w/o a problem. My reaction last night was immediate, as far as the rumbling and gas. I also had a baked potato w/Ghee, asparagus w/Ghee and rice milk. The Ghee and/or rice milk could have been the problem, too.
I will have to begin experimenting and eliminating even more foods now. I had the cloak of Entocort protection before, but can't count on it even with the reduced dosage. If I relapse too badly, ie., everything I eat is a problem, I think I'll call the GI and tell him I'm going back on the full dosage for another month or so.
My dinner may have had something to do with my relapse. I had meatloaf with Lara's oats (guaranteed to be uncontaminated by gluten). I had eaten the meatloaf once before while on the full dose of Entocort w/o a problem. My reaction last night was immediate, as far as the rumbling and gas. I also had a baked potato w/Ghee, asparagus w/Ghee and rice milk. The Ghee and/or rice milk could have been the problem, too.
I will have to begin experimenting and eliminating even more foods now. I had the cloak of Entocort protection before, but can't count on it even with the reduced dosage. If I relapse too badly, ie., everything I eat is a problem, I think I'll call the GI and tell him I'm going back on the full dosage for another month or so.
You never know what you can do until you have to do it.
Gloria,
The oats could also be a problem. Did you read about my somewhat extensive test of guaranteed GF oats last spring? It took me six weeks to react the first time, but that was because my gut had had plenty of time to heal, prior to the test. If you are intolerant of oats, you would probably react promptly, since your gut has not had nearly enough time to finish healing.
Please read this thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6036
The point is, if you are intolerant of ghee, and/or oats, and you have been eating them regularly, your gut has had no opportunity to do any significant healing. And, as Pat points out, the lactose-based probiotic may have helped to clinch the deal. If the reaction doesn't end soon, please don't continue to suffer, if relief is only a phone call away.
Tex
The oats could also be a problem. Did you read about my somewhat extensive test of guaranteed GF oats last spring? It took me six weeks to react the first time, but that was because my gut had had plenty of time to heal, prior to the test. If you are intolerant of oats, you would probably react promptly, since your gut has not had nearly enough time to finish healing.
Please read this thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6036
The point is, if you are intolerant of ghee, and/or oats, and you have been eating them regularly, your gut has had no opportunity to do any significant healing. And, as Pat points out, the lactose-based probiotic may have helped to clinch the deal. If the reaction doesn't end soon, please don't continue to suffer, if relief is only a phone call away.
Tex
Yes, Wayne, I had read your experiment with oats. I've been pretty careful to not eat oats, other than these two times in the meat loaf. I used to eat either an oat bran muffin or a wheat bran muffin every work-day. I also ate Quaker Oat Squares almost every morning for breakfast. Those were the days...
I have read Joanna's weaning off Entocort. She took her time getting off of it, 6 months from start to finish, I believe, plus she's doing the Paleo diet. When I first realized that I needed to go GF, I thought it would be a big sacrifice, and it has been. Then I got my Enterolab results and was almost in shock that I'd have to eliminate dairy, soy, eggs and yeast, too. Now I may be looking at even more restrictions. I'm glad these new restrictions are coming in phases because I don't think I could handle all of them at once. Now I think "Wouldn't it be nice if I just needed to eliminate gluten?" It's taken me several months to be able to go to a grocery store and not get depressed.
Pat, the dairy-based probiotic could have been the problem. I need to buy a non-dairy probiotic from the health-food store. I take so many pills a day that I've been hoping to make an adequate dairy-free yogurt for the probiotics. I haven't had much success yet. Yogurt used to be a staple for my lunch, too.
Some positive news - we went to a church Halloween party this evening and everyone was asked to either bring chili or pie. I brought chili, along with about 30 others. They judged the chili and mine won first prize! One of the judges was a professional chef and he personally complimented me on it. I wanted to tell everyone that we GF people can eat good-tasting foods, too!
I have read Joanna's weaning off Entocort. She took her time getting off of it, 6 months from start to finish, I believe, plus she's doing the Paleo diet. When I first realized that I needed to go GF, I thought it would be a big sacrifice, and it has been. Then I got my Enterolab results and was almost in shock that I'd have to eliminate dairy, soy, eggs and yeast, too. Now I may be looking at even more restrictions. I'm glad these new restrictions are coming in phases because I don't think I could handle all of them at once. Now I think "Wouldn't it be nice if I just needed to eliminate gluten?" It's taken me several months to be able to go to a grocery store and not get depressed.
Pat, the dairy-based probiotic could have been the problem. I need to buy a non-dairy probiotic from the health-food store. I take so many pills a day that I've been hoping to make an adequate dairy-free yogurt for the probiotics. I haven't had much success yet. Yogurt used to be a staple for my lunch, too.
Some positive news - we went to a church Halloween party this evening and everyone was asked to either bring chili or pie. I brought chili, along with about 30 others. They judged the chili and mine won first prize! One of the judges was a professional chef and he personally complimented me on it. I wanted to tell everyone that we GF people can eat good-tasting foods, too!
You never know what you can do until you have to do it.
Congratulations! Almost everyone makes chili, but few make it right. A lot of people even misspell it, (you spelled it right, of course).
Would you mind posting your recipe in the recipe forum - or is it a secret?
Tex
Would you mind posting your recipe in the recipe forum - or is it a secret?
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.
Sure, I'll post the recipe in the recipe forum. It's very basic. I probably spelled it right because I originally majored in Spanish in college. I later switched to math and computer science. I didn't like the literature aspect of Spanish.
I have great news! Norman visited me this morning! Yesterday I ate some cookies I'd made with a combo of ghee and coconut shortening, so I'm going to assume that ghee is OK for me at this level of Entocort. That means I reacted either to the dairy-based probiotic or the oatmeal. I don't want to determine which one right now - I can live without both. I hope it will be this easy to determine additional intolerances. It would have been very difficult to isolate them had I not originally had the Enterolab tests. I really admire Wayne, Polly, and others on this site who took up to a year or more to figure it out and had the faith they could do it.
I slept in this morning and don't have the headache or heavy fatigue that I've had the last few days.
I have great news! Norman visited me this morning! Yesterday I ate some cookies I'd made with a combo of ghee and coconut shortening, so I'm going to assume that ghee is OK for me at this level of Entocort. That means I reacted either to the dairy-based probiotic or the oatmeal. I don't want to determine which one right now - I can live without both. I hope it will be this easy to determine additional intolerances. It would have been very difficult to isolate them had I not originally had the Enterolab tests. I really admire Wayne, Polly, and others on this site who took up to a year or more to figure it out and had the faith they could do it.
I slept in this morning and don't have the headache or heavy fatigue that I've had the last few days.
You never know what you can do until you have to do it.
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Re: Weaning Off Entocort
Hi Gloria,Gloria wrote: I'm wondering if I am tapering the Entocort too soon. I've been on it for about 3 1/2 months. I just barely started having one BM per day. I've been GF since the end of June. I read on the old board that you felt that 3 months on Entocort isn't long enough to heal the gut. Is that still the consensus? I'm thinking I'll try the 2X a day for a week and if I start to have problems I should go back to 3X a day. What are your opinions?
Entocort was a great medication for me- took it 6 months, with no problems to speak of. The reason I took it for that length of time was to feel extra confident my gut had healed before I even started weaning off it. After researching, I felt it was a safe drug to take for that length of time and had read clinical trials and online posts of folks relapsing after short term usage. So the 6 month stint worked for me in conjunction with making major adjustments to my diet and lifestyle like you.
Bob posted a comment awhile ago that his GI suggested not stopping or weaning down on Entocort until there was zero inflamation for at least 3 consecutive months. Also, that it's much easier to prevent a flare than to stop one. I tend to feel likewise.
So what is your gut telling you? Would you feel more comfortable taking it for awhile longer? Like you, I remember being very nervous about weaning off it so I sure understand where your coming from...
Glad your having a better day today and congratulations on the Chili!
Hang in there!
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
I guess VSL #3 is a dairy based probiotic. It is lactic acid bacteria. ( hand hits forehead) Sometimes I feel so dumb. So what is a non dairy probiotic? I actually haven't taken it for awhile because it didn't really seem to be helping. Actually nothing helps the D. I take immodium but even that doesn't make that much difference. I have maintained my GF, DF, SF, and FF (fructose free) diet and have not had any relief from the D. The FF diet helps with the gas and gurgling and muscle aches. It's fairly easy to sub for gluten but not for fruit! Gloria, have you been tested for fructose intolerance? You mentioned that the gas and gurgling came back when you cut back from 3 to 2 Entocort. I wouldn't even be able to taste chili right now. The spices would kill me!
Pat
Pat
Pat,
VSL #3 may not necessarily be dairy based. Consider this:
http://ourworld.compuserve.com/homepage ... xperts.htm
Actually, though, we may be talking about the bacteria that convert lactose to lactic acid, (rather than lactic acid itself - am I correct?), and those are normally Streptococcus thermophilus. Is this the bacteria found in VSL #3? If so, then the question becomes, "Do those bacteria contain lactose, when they are "harvested" and added to the probiotic, or are they "nourished by some other prebiotic"? If they contain only lactic acid, (which they should, since the lactose inside them should be promptly "digested"), then they should be safe for people who are dairy intolerant. If these bacteria are not in the probiotic, then chances are, the lactic acid is from a non-dairy source anyway, so it becomes a moot question.
Tex
VSL #3 may not necessarily be dairy based. Consider this:
This quote comes from this site:Lactic Acid
A widely used acid, flavouring, preservative, and synergist for antioxidants which occurs as a by-product of lactic fermentation of carbohydrates in milk, meat and beers. Prepared by fermenting sugar or by chemical synthesis. (Guide) Produced commercially by the fermentation of whey, cornstarch, potatoes, and molasses. Also: Butyl Lactate; Ethyl Lactate. (Dictionary)
Rabbi J. Schonberger, on JCN's Kashrut Q&A Forum, says that lactic acid is not derived from lactose, and is pareve.
On the other hand, Rabbi Eliezer Eidlitz, the Rabbinic Administrator of the Kosher Information Bureau, provides a little more information:
Sources: molasses, corn starch, glucose. Use: preservative, flavoring. (Lactic acid can also be produced from whey, in which case it is dairy, but its use is restricted to ice cream and cream cheese). Kosher, pareve without supervision.
Note that FAAN (The Food Allergy & Anaphylaxis Network) says of lactic acid that it does "not contain milk protein and need not be restricted by someone avoiding milk."
Can this additive be found in parve foods? Yes.
Chances it will ever contain lactose? Slim outside of dairy products.
Should it be avoided if you are mildly allergic? Doublecheck before using.
http://ourworld.compuserve.com/homepage ... xperts.htm
Actually, though, we may be talking about the bacteria that convert lactose to lactic acid, (rather than lactic acid itself - am I correct?), and those are normally Streptococcus thermophilus. Is this the bacteria found in VSL #3? If so, then the question becomes, "Do those bacteria contain lactose, when they are "harvested" and added to the probiotic, or are they "nourished by some other prebiotic"? If they contain only lactic acid, (which they should, since the lactose inside them should be promptly "digested"), then they should be safe for people who are dairy intolerant. If these bacteria are not in the probiotic, then chances are, the lactic acid is from a non-dairy source anyway, so it becomes a moot question.
Tex
Tex,
The VSL#3 bottle just says lactic acid bacteria, microcrystalline cellulose, stearic acid, silicon dioxide. Thanks for all that information!
Gloria,
I should have congratulated you on your win in the chili cook off. I am glad you are having some fun and with food! My husband is a hunter and we usually cook some venison chili. It used to taste really good to me.
Sleep helps a number of ailments!
Pat
The VSL#3 bottle just says lactic acid bacteria, microcrystalline cellulose, stearic acid, silicon dioxide. Thanks for all that information!
Gloria,
I should have congratulated you on your win in the chili cook off. I am glad you are having some fun and with food! My husband is a hunter and we usually cook some venison chili. It used to taste really good to me.
Sleep helps a number of ailments!
Pat
Yesterday I had another BM in the evening - not as formed, but still OK. This morning, the same thing. I'm giving this trial reduction a week - until tomorrow. I think I should have waited until I had 1 BM/day for several weeks. I was starting to think that would never happen and I could be on the steroid forever. And maybe I will - who knows?
Before I had LC, one per day was the norm for me, so I am not back to normal. Does everyone get back to normal? Are the stools supposed to be the same as before MC? I don't think I ever used to spend time looking in the bowl like I do now.
It's like every visit to the bathroom is an exam. Only you guys understand!
Before I had LC, one per day was the norm for me, so I am not back to normal. Does everyone get back to normal? Are the stools supposed to be the same as before MC? I don't think I ever used to spend time looking in the bowl like I do now.
It's like every visit to the bathroom is an exam. Only you guys understand!You never know what you can do until you have to do it.
Yep, we are indeed a weird bunch, but then, we've got an excuse - we have a weird disease. Statistically, I'll bet we spend more time bowl-watching, than any other subset of the general population. LOL.Gloria wrote:Does everyone get back to normal? Are the stools supposed to be the same as before MC? I don't think I ever used to spend time looking in the bowl like I do now.
We've never done a poll on that topic, but I was under the impression that virtually everyone who achieves remission, gets back to the same general frequency/schedule that they originally had. I suspect that in many cases, the stool texture, consistency, conformity, etc., may vary to some degree, but this may well be due to changes in diet/medication, that were necessary in order to achieve remission.
Now you've made me curious - I think I'll set up a poll to try to gain some insight on that topic.
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.