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Does anyone know of anyone that not gone GF/SF
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Does anyone know of anyone that not gone GF/SF
Does anyone know of anyone that has not gone GF/SF, taken Entocort and gotten better. Just out of curiousity. By this I mean just maybe some dietary changes like cutting back of raw fruits or veggies and some pasta and breads. This would be someone with LC.
Hi Lisa,
I got better in days, by simply stopping taking dairy (and later HRT). No drugs.
However, it later became clear a bunch of other non LC issues were related to gluten, so I gave it up too and my health is definitely better without it. Now I think traces of gluten does affect my bowels, even if it doesn't cause full on D.
As I think Tex mentions elsewhere, there certainly are folk who have incidences of MC and then go into natural remission. Mostly we don't see them here, or they don't stay long, simply because they don't need our help. A lot of people in that situation we suspect have drug caused MC. So stopping the relevant drug means the D can resolve relatively easily.
Lyn
I got better in days, by simply stopping taking dairy (and later HRT). No drugs.
However, it later became clear a bunch of other non LC issues were related to gluten, so I gave it up too and my health is definitely better without it. Now I think traces of gluten does affect my bowels, even if it doesn't cause full on D.
As I think Tex mentions elsewhere, there certainly are folk who have incidences of MC and then go into natural remission. Mostly we don't see them here, or they don't stay long, simply because they don't need our help. A lot of people in that situation we suspect have drug caused MC. So stopping the relevant drug means the D can resolve relatively easily.
Lyn
Lisa,
I'm not sure that I understand your question. It can be interpreted two ways. The first way refers to people who have not removed gluten nor soy from their diet, and who have not taken Entocort, and have seen improvement in their condition. Lyn addressed that question with her response.
The second way to interpret it would be that you are referring to people who have not removed gluten and soy from their diet, but who have treated their symptoms with Entocort EC, and they have seen improvement in their condition. If that is what you intended to ask, then the answer to that is also yes, there are many people who have done that, (since that's a standard treatment prescribed by many GI specialists). The answer somewhat depends on what you mean by "gotten better". Almost everyone improves with Entocort treatment, (except for those for whom it is ineffective, and those who are allergic to it). For some, the improvement seems to last, (as long as they take the Entocort), though it may not always eliminate all of their symptoms. Even for those who get good control, if/when they stop taking the Entocort, sooner or later, the symptoms almost always return, if diet changes haven't been made. Unfortunately, in a few of those cases, they have been unable to get their symptoms back under control, despite their best efforts, because for some people, Entocort EC seems to stop working effectively, after repeated relapse/treatment cycles.
So to answer your "real" question, no, not everyone has to modify their diet in order to get "reasonable" control of symptoms. Entocort EC provides "acceptable control" in many cases, as long as it is taken indefinitely. It doesn't work for everyone, though - in some cases both Entocort and diet changes are necessary, in order to bring remission. Diet modification is only necessary for those who are very sensitive to certain foods, and those who want to eliminate all their symptoms, without having to worry about a relapse at any time in the future. Luck surely plays a part in this, also, but I have never been very lucky, so I don't take any chances with gluten.
We are all different, though, and we each have to work out a treatment program that we feel is best suited for us, individually. IOW, only you can decide what is best for you. We are here to share experiences and information, but we can't tell you what you should do - we can only tell you what we have learned from our individual and collective experiences, or what we would do if we were in your situation. The rest is up to you.
Tex
I'm not sure that I understand your question. It can be interpreted two ways. The first way refers to people who have not removed gluten nor soy from their diet, and who have not taken Entocort, and have seen improvement in their condition. Lyn addressed that question with her response.
The second way to interpret it would be that you are referring to people who have not removed gluten and soy from their diet, but who have treated their symptoms with Entocort EC, and they have seen improvement in their condition. If that is what you intended to ask, then the answer to that is also yes, there are many people who have done that, (since that's a standard treatment prescribed by many GI specialists). The answer somewhat depends on what you mean by "gotten better". Almost everyone improves with Entocort treatment, (except for those for whom it is ineffective, and those who are allergic to it). For some, the improvement seems to last, (as long as they take the Entocort), though it may not always eliminate all of their symptoms. Even for those who get good control, if/when they stop taking the Entocort, sooner or later, the symptoms almost always return, if diet changes haven't been made. Unfortunately, in a few of those cases, they have been unable to get their symptoms back under control, despite their best efforts, because for some people, Entocort EC seems to stop working effectively, after repeated relapse/treatment cycles.
So to answer your "real" question, no, not everyone has to modify their diet in order to get "reasonable" control of symptoms. Entocort EC provides "acceptable control" in many cases, as long as it is taken indefinitely. It doesn't work for everyone, though - in some cases both Entocort and diet changes are necessary, in order to bring remission. Diet modification is only necessary for those who are very sensitive to certain foods, and those who want to eliminate all their symptoms, without having to worry about a relapse at any time in the future. Luck surely plays a part in this, also, but I have never been very lucky, so I don't take any chances with gluten.
We are all different, though, and we each have to work out a treatment program that we feel is best suited for us, individually. IOW, only you can decide what is best for you. We are here to share experiences and information, but we can't tell you what you should do - we can only tell you what we have learned from our individual and collective experiences, or what we would do if we were in your situation. The rest is up to you.
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 think I would change that statement to say "if sufficient diet changes haven't been made." It's sometimes difficult to determine if the "sufficient changes" have been made until you're completely off Entocort. If they haven't, the MC comes back with a vengence.Tex wrote:Even for those who get good control, if/when they stop taking the Entocort, sooner or later, the symptoms almost always return, if diet changes haven't been made.
Gloria
You never know what you can do until you have to do it.
Gloria,
You're correct of course, that would have been much better wording. My version is still technically correct, since if no diet changes have been made, then relapse is almost surely going to occur, following cessation of treatment with Entocort, (and that was my point), but your version is definitely a refinement, since it implies that relapse can occur even with diet changes, if the diet changes are not sufficient.
Tex
You're correct of course, that would have been much better wording. My version is still technically correct, since if no diet changes have been made, then relapse is almost surely going to occur, following cessation of treatment with Entocort, (and that was my point), but your version is definitely a refinement, since it implies that relapse can occur even with diet changes, if the diet changes are not sufficient.
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.
Lisa,
Unfortunately, for those of us who are sensitive to gluten, we are just as sensitive as celiacs, (and in some cases, more sensitive than celiacs), so cutting back on gluten will probably not show any noticeable benefit. IOW, a little gluten in the diet will have virtually the same effect as a lot of gluten. It has to be eliminated from the diet virtually 100%, in order to stop the generation of inflammation. Dosage does matter, but the threshold amounts for a reaction are on the order of 50 to 200 parts per million, for most of us, and that is a tiny amount of gluten. Products with less than 20 parts per million are usually safe, and can be legally labeled as gluten-free, (even though they are not). At 50 ppm, some of us will react to them. At 200 ppm, many of us will react to them.
Tex
Unfortunately, for those of us who are sensitive to gluten, we are just as sensitive as celiacs, (and in some cases, more sensitive than celiacs), so cutting back on gluten will probably not show any noticeable benefit. IOW, a little gluten in the diet will have virtually the same effect as a lot of gluten. It has to be eliminated from the diet virtually 100%, in order to stop the generation of inflammation. Dosage does matter, but the threshold amounts for a reaction are on the order of 50 to 200 parts per million, for most of us, and that is a tiny amount of gluten. Products with less than 20 parts per million are usually safe, and can be legally labeled as gluten-free, (even though they are not). At 50 ppm, some of us will react to them. At 200 ppm, many of us will react to them.
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.
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MBombardier
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This may be beating a dead horse, but it seems to me that remembering MC is an incurable disease is important. As Polly's experience this summer showed, the damage from the MC can be completely healed and stress, or drugs, or another factor can still initiate a flare up of the MC.
So "getting better" is probably relative for most of us, as in how much pain one is willing to live with. And that's going to be different for different people, too.
So "getting better" is probably relative for most of us, as in how much pain one is willing to live with. And that's going to be different for different people, too.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011