Visit the Microscopic Colitis Foundation Website
I had my first follow up with my GI last week, the first since my diagnosis on June 13th. He was very attentive and listened to my comments about food reactions, diarrhea, etc. I really like my GI and am glad that he is my doctor since he knew to take the biopsies during my colonoscopy and thus we got my diagnosis of MCC.
That said, he "does not know much" about Dr. Fine and Enterolab. He did not disrespect Dr. Fine; he just stated that he thinks we can quite a lot of information from today's blood tests. From the discussions on this website, I know this is not accurate.
He did, however, have blood drawn to test me for sprue. My strong reactions to gluten lead him to think that I might have both MCC and Celiac disease. I hope it's not true. Results are not yet in.
I am to continue on Entocort for 6 more weeks (12 weeks total), then either taper or quit cold turkey. My doctor thinks there's no difference. I need feedback from you all. I do want to get off the medication, but I don't know what kind of reactions would happen if I went cold turkey. I still have 5 more weeks to go, so I have time to research this and think through next steps.
Sharaine
My follow up appointment with the GI last week
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Sharaine,
Quite a few members here do have both MC and celiac disease, but for most of us, of course, our blood test result is negative, even though we are just as sensitive to gluten as the average celiac.
Regarding withdrawing from Entocort, for anyone who takes it for less than 6 or 8 months, it's unlikely that there will be enough immune system suppression or organ dependency to cause withdrawal symptoms, even if the Entocort is stopped cold turkey. If it's taken for a year or longer, though, it's almost always a good idea to withdraw by tapering the dose over a period of at least several weeks, in order to avoid withdrawal symptoms. In fact, IMO, it's probably always a good idea to taper the dose over an extended period, even for short treatment regimens, because that provides a somewhat longer effective treatment period, which translates into a longer period of remission. IOW, unless you respond to the GF diet much faster than normal, your symptoms will almost certainly relapse, a few days after the Entocort is completely stopped, unless you have been taking Entocort, and following the diet, (and healing), for at least a year or more. At least, that has been our collective experience, here on the board.
Tex
Quite a few members here do have both MC and celiac disease, but for most of us, of course, our blood test result is negative, even though we are just as sensitive to gluten as the average celiac.
Regarding withdrawing from Entocort, for anyone who takes it for less than 6 or 8 months, it's unlikely that there will be enough immune system suppression or organ dependency to cause withdrawal symptoms, even if the Entocort is stopped cold turkey. If it's taken for a year or longer, though, it's almost always a good idea to withdraw by tapering the dose over a period of at least several weeks, in order to avoid withdrawal symptoms. In fact, IMO, it's probably always a good idea to taper the dose over an extended period, even for short treatment regimens, because that provides a somewhat longer effective treatment period, which translates into a longer period of remission. IOW, unless you respond to the GF diet much faster than normal, your symptoms will almost certainly relapse, a few days after the Entocort is completely stopped, unless you have been taking Entocort, and following the diet, (and healing), for at least a year or more. At least, that has been our collective experience, here on the board.
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.
Sharaine,
I think it's a good idea to prolong the Entocort tapering as long as you can. Most of us tend to greatly underestimate the effectiveness of Entocort in suppressing our symptoms. If you go off it slowly, you will be able to make additional changes to your diet as needed, and might not be hit with extreme D once you're completely off of it.
Gloria
I think it's a good idea to prolong the Entocort tapering as long as you can. Most of us tend to greatly underestimate the effectiveness of Entocort in suppressing our symptoms. If you go off it slowly, you will be able to make additional changes to your diet as needed, and might not be hit with extreme D once you're completely off of it.
Gloria
You never know what you can do until you have to do it.
Thank you, Tex and Gloria.
Sigh. I will definitely go the tapered route. I have to say I'm frightened by the idea that the symptoms could come roaring back. I guess, however, that I'm going to have to face life without Entocort sooner or later. In the meantime, I'll keep working to be faithful to GF/DF.
Hugs, Sharaine
Sigh. I will definitely go the tapered route. I have to say I'm frightened by the idea that the symptoms could come roaring back. I guess, however, that I'm going to have to face life without Entocort sooner or later. In the meantime, I'll keep working to be faithful to GF/DF.
Hugs, Sharaine
Sharaine,
As Gloria said, if the Symptoms return, that usually means other food sensitivities that may have to be removed from the diet, but if you have only been on the diet for a few months, it could also mean that you simply need more time to heal.
Hugs,
Tex
As Gloria said, if the Symptoms return, that usually means other food sensitivities that may have to be removed from the diet, but if you have only been on the diet for a few months, it could also mean that you simply need more time to heal.
Hugs,
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.