Hi,
I'm new to this site. I was diagnosed with celiac 3 years ago and mc 2 years ago, I have been on a strict gf diet for the past 3 years and live in a gf house. I was symptom free for the first time in 6 years this fall while being on entocort 9mg a day... My doctor told me to try coming off of it... After a few days of 6mg a day all my symptoms came back so I was told to go back up to 9mg a day, it's been weeks and I still have my symptoms ( where as the first time I took 9mg I had relief after 2 days of taking it) has anyone else experienced this??Why doesn't it work anymore :( ??
Entocort no longer working
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Hi Ashley,
Welcome to our internet family. I'm sorry that you're having problems restoring remission. Based on our accumulated experience here, it is somewhat common for Entocort to take longer to produce benefits, once it is discontinued, or the dose has been reduced. Since your symptoms returned so quickly, though, (for most members, symptoms don't return until the dose has been reduced down to 3mg per day, or less), that is strong evidence that you probably have other food intolerances. We have found that most people with MC are not only gluten sensitive, but also sensitive to casein, (the primary protein in dairy products), and about half of us are sensitive to soy, and all it's derivatives. Believe it or not, for many of us who have small intestinal involvement, casein can cause the same degree of villus atrophy as gluten, and so can soy, (and for some of us, so can corn and other grains).
The good news is, we usually respond rather promptly to the total removal of casein and/or soy from the diet, in such a situation. (IOW, the half-life of casein antibody production is much, much shorter than the half-life for anti-gliadin antibody production.) Gluten antibodies can be detected in stool tests for up to 2 years after the GF diet is initiated, but casein and soy antibodies can be detected for only a few weeks to a few months after casein and/or soy are removed from the diet, so it doesn't take as long for the inflammation in the intestines to subside.
Also, the immune system seems to have evolved to focus primarily on a single problem at any given time, (whatever it perceives as the primary threat). This is why parasitic worms, for example, can divert the immune system, and stop an IBD reaction. If the immune system is continuously reacting to gluten, then it may tend to pretty much ignore other, less significant allergens, in order to concentrate it's efforts on the major threat. If the gluten threat is removed from the diet, then it will concentrate on the next most significant threat, such as casein, or soy, or whatever. As long as two or more allergens are in the diet, it will tend to concentrate on the major perceived threat. Once all triggers are removed from the diet, and the antibodies have time to die down, then the immune system will be in standby mode, with guards posted all around, keeping an eye out for any of the allergens that it perceives to be enemies. When any one of them appears, then an immediate attack is launched, and the immune system throws everything it has, into the battle against that particular "invader".
IOW, now that the anti-gliadin antibodies have cleared your system, your immune system may have recently "recognized" either casein or soy, as allergens, and the Entocort may not be sufficient to control the inflammation. For some people it is adequate, but for many of us, it is necessary to alter our diet, in order to control our symptoms, (even with Entocort).
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry that you're having problems restoring remission. Based on our accumulated experience here, it is somewhat common for Entocort to take longer to produce benefits, once it is discontinued, or the dose has been reduced. Since your symptoms returned so quickly, though, (for most members, symptoms don't return until the dose has been reduced down to 3mg per day, or less), that is strong evidence that you probably have other food intolerances. We have found that most people with MC are not only gluten sensitive, but also sensitive to casein, (the primary protein in dairy products), and about half of us are sensitive to soy, and all it's derivatives. Believe it or not, for many of us who have small intestinal involvement, casein can cause the same degree of villus atrophy as gluten, and so can soy, (and for some of us, so can corn and other grains).
The good news is, we usually respond rather promptly to the total removal of casein and/or soy from the diet, in such a situation. (IOW, the half-life of casein antibody production is much, much shorter than the half-life for anti-gliadin antibody production.) Gluten antibodies can be detected in stool tests for up to 2 years after the GF diet is initiated, but casein and soy antibodies can be detected for only a few weeks to a few months after casein and/or soy are removed from the diet, so it doesn't take as long for the inflammation in the intestines to subside.
Also, the immune system seems to have evolved to focus primarily on a single problem at any given time, (whatever it perceives as the primary threat). This is why parasitic worms, for example, can divert the immune system, and stop an IBD reaction. If the immune system is continuously reacting to gluten, then it may tend to pretty much ignore other, less significant allergens, in order to concentrate it's efforts on the major threat. If the gluten threat is removed from the diet, then it will concentrate on the next most significant threat, such as casein, or soy, or whatever. As long as two or more allergens are in the diet, it will tend to concentrate on the major perceived threat. Once all triggers are removed from the diet, and the antibodies have time to die down, then the immune system will be in standby mode, with guards posted all around, keeping an eye out for any of the allergens that it perceives to be enemies. When any one of them appears, then an immediate attack is launched, and the immune system throws everything it has, into the battle against that particular "invader".
IOW, now that the anti-gliadin antibodies have cleared your system, your immune system may have recently "recognized" either casein or soy, as allergens, and the Entocort may not be sufficient to control the inflammation. For some people it is adequate, but for many of us, it is necessary to alter our diet, in order to control our symptoms, (even with Entocort).
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.