trying life without endocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
trying life without endocort
I was diagnosed with CC a little over two years ago and finally stopped taking endocort this past summer (yes almost two years) and am trying to control my symptoms with diet alone. I cut out gluten and most dairy, corn based products, leafy greens, I limit my intake of raw fruit, no legumes, and no refined sugar. Most days are okay but sometimes with no rhyme or reason (it seems) I have an awful day. I am desperate to stay off drugs is there anything else I can try??
Leslie,
To expand on Brandy's observation about the difficulties that can follow discontinuing the use of Entocort, corticosteroids suppress mast cell numbers, and when we stop taking Entocort, mast cell numbers rebuild again. For many/most of us, there can be a rebound effect where the mast cell numbers increase above normal numbers, and when that happens it can cause symptoms, and in many cases it can even lead to a relapse (if the Entocort is discontinued without tapering the dosage slowly enough).
If I were in that situation, I would try taking a daily antihistamine (to suppress histamine, in case excess mast cell activity is causing your symptoms). For many of us, an antihistamine seems to work almost as well as Entocort, and antihistamines are much safer to take, of course. If an antihistamine is going to help, you should see a significant improvement almost immediately. If it works for you, eventually, your mast cell numbers and activity should settle down to a more normal pattern, and you may no longer need to use an antihistamine.
Leah's suggestion of keeping a food/reaction diary is definitely a good idea also, since that may enable you to spot one or more foods in your diet that is/are causing problems.
Tex
To expand on Brandy's observation about the difficulties that can follow discontinuing the use of Entocort, corticosteroids suppress mast cell numbers, and when we stop taking Entocort, mast cell numbers rebuild again. For many/most of us, there can be a rebound effect where the mast cell numbers increase above normal numbers, and when that happens it can cause symptoms, and in many cases it can even lead to a relapse (if the Entocort is discontinued without tapering the dosage slowly enough).
If I were in that situation, I would try taking a daily antihistamine (to suppress histamine, in case excess mast cell activity is causing your symptoms). For many of us, an antihistamine seems to work almost as well as Entocort, and antihistamines are much safer to take, of course. If an antihistamine is going to help, you should see a significant improvement almost immediately. If it works for you, eventually, your mast cell numbers and activity should settle down to a more normal pattern, and you may no longer need to use an antihistamine.
Leah's suggestion of keeping a food/reaction diary is definitely a good idea also, since that may enable you to spot one or more foods in your diet that is/are causing problems.
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.
Starting a food diary has helped me too.... I can forget so quickly what I ate last night or even what I had for lunch.
I had 3 huge bouts of D yesterday after no symptoms for over 2 weeks... food diary showed I had spaghetti squash for lunch and roasted turnips for dinner... perhaps too much fiber... or was it the pecan nut thins? duh, I had 3 new foods in one day... when I saw it in writing, there it was.
Hoping all these suggestions form our group will help you through these transition days and weeks.
Sunny
I had 3 huge bouts of D yesterday after no symptoms for over 2 weeks... food diary showed I had spaghetti squash for lunch and roasted turnips for dinner... perhaps too much fiber... or was it the pecan nut thins? duh, I had 3 new foods in one day... when I saw it in writing, there it was.
Hoping all these suggestions form our group will help you through these transition days and weeks.
Sunny
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Upton Sinclair
Upton Sinclair