Hi - I've tried entocort but it did not seem to work. Could someone please explain the diet route for MC to me? I was trying to just eat rice - but then I just stopped eating. Also, how long does the diet take to work? When does one see improvements? After a week or a month? etc. Anyone not able to improve by diet changes? Any help would be appreciated. Thanks everyone. Also, I spent a long time being told I had IBS. Anyone else?
fuddles
Diet for MC?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Fuddles,
Welcome to our online family. Most GI docs are not aware of this, (in fact they will insist that diet has nothing to do with MC), but several of us discovered independently, several years ago, that when a gene that predisposes to MC is triggered, another gene is triggered that makes most of us sensitive to gluten. For some of us, the small intestine is affected, (much like celiacs), but for many others, only the colon seems to be affected, (which distinguishes our type of gluten sensitivity from that of celiacs). Because of that, we will always test negative to the classic celiac blood tests, unless we also have celiac sprue, in addition to MC, (which is true for a surprising number of individuals). Since then, by means of sharing information through this board, (and one that preceded it), many of us have been able to achieve remission, by diet changes alone. Dr. Fine's research has also verified this approach to treating MC. (Dr. Kenneth Fine is the founder of Enterolab, and has MC, himself).
One difference between us and celiacs is that many/most of us are also intolerant to one or two additional proteins, (besides gluten), such as casein, (the main protein in dairy products), and about half of us are intolerant to soy. Some, of course, have additional intolerances, as you will see by reading posts here.
We are all different in our responses to meds, and to diet changes. Some see remission in a matter of weeks, (with certain meds, a few see remission in a few days), but since the gut has to go through a healing process, (due to physical damage from gluten), it usually takes several months to achieve remission, and a few of us have taken a year or longer, (especially those who are ultra-sensitive, and those who have had symptoms for years, and therefore, have accrued a lot of damage to their intestines).
I believe that eventually, everyone sees improvement on the diet, but it can take a while for the toughest cases. How long did you try Entocort? Sometimes it takes a while. For some individuals, of course, it does not work, (it has about a 60 to 70 % success rate). Some of us have used a combination of Entocort and diet to achieve remission sooner, and then the Entocort can usually be phased out, after the gut heals.
Many of us have been diagnosed as having IBS. As we so often say, the difference between a diagnosis of IBS and a diagnosis of MC, is usually a biopsy. If you are currently following the usual recommendations for treating IBS, the first thing you need to do is reduce your fiber intake. Fiber irritates the colon when it is inflamed due to MC, and it can keep a "flare" going, so that remission is much more difficult to achieve.
Please feel free to ask any questions, and again, welcome to the board.
Tex
Welcome to our online family. Most GI docs are not aware of this, (in fact they will insist that diet has nothing to do with MC), but several of us discovered independently, several years ago, that when a gene that predisposes to MC is triggered, another gene is triggered that makes most of us sensitive to gluten. For some of us, the small intestine is affected, (much like celiacs), but for many others, only the colon seems to be affected, (which distinguishes our type of gluten sensitivity from that of celiacs). Because of that, we will always test negative to the classic celiac blood tests, unless we also have celiac sprue, in addition to MC, (which is true for a surprising number of individuals). Since then, by means of sharing information through this board, (and one that preceded it), many of us have been able to achieve remission, by diet changes alone. Dr. Fine's research has also verified this approach to treating MC. (Dr. Kenneth Fine is the founder of Enterolab, and has MC, himself).
One difference between us and celiacs is that many/most of us are also intolerant to one or two additional proteins, (besides gluten), such as casein, (the main protein in dairy products), and about half of us are intolerant to soy. Some, of course, have additional intolerances, as you will see by reading posts here.
We are all different in our responses to meds, and to diet changes. Some see remission in a matter of weeks, (with certain meds, a few see remission in a few days), but since the gut has to go through a healing process, (due to physical damage from gluten), it usually takes several months to achieve remission, and a few of us have taken a year or longer, (especially those who are ultra-sensitive, and those who have had symptoms for years, and therefore, have accrued a lot of damage to their intestines).
I believe that eventually, everyone sees improvement on the diet, but it can take a while for the toughest cases. How long did you try Entocort? Sometimes it takes a while. For some individuals, of course, it does not work, (it has about a 60 to 70 % success rate). Some of us have used a combination of Entocort and diet to achieve remission sooner, and then the Entocort can usually be phased out, after the gut heals.
Many of us have been diagnosed as having IBS. As we so often say, the difference between a diagnosis of IBS and a diagnosis of MC, is usually a biopsy. If you are currently following the usual recommendations for treating IBS, the first thing you need to do is reduce your fiber intake. Fiber irritates the colon when it is inflamed due to MC, and it can keep a "flare" going, so that remission is much more difficult to achieve.
Please feel free to ask any questions, and again, welcome to 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.
Fuddles. Glad you found us.Thanks for the advice! I started the gluten-free, soy-free, dairy-free diet. I've been on entocort for three months. Since that wasn't working for me the GI doctor said it did work and now it is just IBS. I don't believe him. Nothing has changed. I still have the exact same symptoms. I wake up at 3 or 4 am with cramping and D. I did try that dumb fiber increase idea, but as stated above it just made me worse. Funny enough there is some questions now as to whether it is a good idea even for those with IBS-D!
fuddles
fuddles
I apologize to the few good GI docs out there for saying this, but that is so typical of so many GI docs who try to treat MC. When their recommended treatment doesn't work, they usually blame the patient. I have to say, though, yours is the first one I've heard of who claimed that it did work, when it obviously didn't. If that statement weren't so pathetic, it would be incredibly funny. It goes to show though, how flustered some of them get when they don't know what to do, and they're trying to appear to be an expert. LOL. Sometimes it takes a while, but if you haven't seen at least some improvement in three months, it appears that Entocort is just not going to work for you, at least not without some diet changes.fuddles wrote:I've been on entocort for three months. Since that wasn't working for me the GI doctor said it did work and now it is just IBS. I don't believe him. Nothing has changed.
You know, you may be right about fiber not even being a good idea for patients with IBS. Anytime the gut is extra-sensitive, it needs soft, bland foods, not something that might irritate it because of the texture.
As to whether or not the diet is permanent, once the genes that activate MC are triggered, we will always have it. As long as we treat it, though, we can keep it under control. In that respect, we are very much like celiacs, who have to follow the GF diet for the rest of their lives, in order to control their symptoms, except that many of us have to eliminate certain other foods, in addition to gluten. As long as we faithfully adhere to a diet that works for us, though, we will remain healthy, and symptom-free. Those who use meds to control their symptoms, have to pretty much do the same thing. IOW, they have to take the med for the rest of their lives, though usually, they can reduce the dosage to a maintainence level, after they achieve remission. A lot of GI docs don't realize that. As soon as a patient achieves remission, many GI docs think that they can stop the med, and the the patient will be fine. In virtually every case, though, the patient will relapse, without a regular course of meds, (unless they are following the diet, of course). IOW, MC cannot be cured, but it can certainly be controlled. A few lucky individuals are fortunate enough to experience spontaneous remission, but this is pretty rare. Most of us have to control our MC by some treatment plan, for the rest of our lives.
You didn't say whether or not you are phasing out the Entocort, but many of us have found that we can achieve remission faster if we continue to use Entocort, while following the diet, also. Then, after being in remission for a while, the Entocort dosage can usually be slowly reduced, and finally stopped altogether, without affecting remission.
There is a lot of information on the diet in this forum:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
There is also a lot of good information at some of the links cited in this forum:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=15
There are hundreds of good GF recipes here, but I'm not sure if they are all dairy-free and soy-free, (though I think they may be), so be sure to read the ingredients carefully before trying any of them. Dee is a professional chef, (who has MC, of course):
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Good luck with the diet. It's not easy, but it will allow you to get your life back, and after your gut heals, you might be able to add some foods back into your diet, (but not gluten, of course). Please feel free to ask any questions that come to mind, and never hesitate to come here for support if you are having a bad day, or whatever. Please keep us updated on your progress, (or lack of progress), and we'll try to help in any we can. We learn from each other, here, so your feedback is important.
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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artteacher
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I've been away, as usual . . but I wanted to check in and say hi, and to give you a compliment, Tex. Your explanation of MC to the point. I esp like how you summed up how we are different yet similar to people with celiac disease.
Fuddles, you're in good hands here. Tex, and everyone here, can share experience that will save you months and years of trial and error. I think you will be able to resolve your tummy problems, with a little trial and error. Getting involved with this website saved my life. Thanks everyone!!!!!
Here's my advice. If there are foods that you are sure do not aggravate your digestive tract, eat those only. For me, that would mean plain meat, canned green beans, canned pears in fruit juice, cabbage (raw or cooked), potatoes if I have to have a starch. These foods are non-dairy, non-gluten, low sulfite, softened through the canning process, low carb for the most part, "low residue diet"-ish. The fiber contained in these foods isn't too irritating, at least for me. I would suggest eating just 3 times a day, also. I personally think it's good to let your intestines rest between exposure to possible irritants. Also learn your transit time to help pinpoint which foods are upsetting you. For instance, if I ate dairy at breakfast on Monday, I would be violently diarrhea-ish starting at noon on Tuesday. It took me years to figure that one out, and from that point on, I've been much better at figuring out what specific food makes me sick.
If these things help you, I'd be so happy. If they don't apply, sorry. I'm sure someone will have a similar case to yours, though. All my best wishes,
artteacher
Fuddles, you're in good hands here. Tex, and everyone here, can share experience that will save you months and years of trial and error. I think you will be able to resolve your tummy problems, with a little trial and error. Getting involved with this website saved my life. Thanks everyone!!!!!
Here's my advice. If there are foods that you are sure do not aggravate your digestive tract, eat those only. For me, that would mean plain meat, canned green beans, canned pears in fruit juice, cabbage (raw or cooked), potatoes if I have to have a starch. These foods are non-dairy, non-gluten, low sulfite, softened through the canning process, low carb for the most part, "low residue diet"-ish. The fiber contained in these foods isn't too irritating, at least for me. I would suggest eating just 3 times a day, also. I personally think it's good to let your intestines rest between exposure to possible irritants. Also learn your transit time to help pinpoint which foods are upsetting you. For instance, if I ate dairy at breakfast on Monday, I would be violently diarrhea-ish starting at noon on Tuesday. It took me years to figure that one out, and from that point on, I've been much better at figuring out what specific food makes me sick.
If these things help you, I'd be so happy. If they don't apply, sorry. I'm sure someone will have a similar case to yours, though. All my best wishes,
artteacher
Hi Marsha,
Thanks for the kind words, and it's great to see you posting again. It's a shame that you don't have time to post more often, because the insight and advice that you've shared with us has always been right on target, and very beneficial.
How in the world are you doing these days? . . . symptom-free, I hope.
Please don't stay away so long between posts - we miss you around here.
Tex
Thanks for the kind words, and it's great to see you posting again. It's a shame that you don't have time to post more often, because the insight and advice that you've shared with us has always been right on target, and very beneficial.
How in the world are you doing these days? . . . symptom-free, I hope.
Please don't stay away so long between posts - we miss you around here.
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.