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We have had several discussion here on what works best to control this disease, diet, medication or combination of both. Personally I think diet is still the best solution, if needed in combination with medication.
My history, diagnosed almost two years ago, an immediate response on entocort (I take one a day, because that always worked for me and a higher dosage give me side effects). Also for one and half year on a very sober GF, DF, YF, EG, SF, CF diet. Until april 2011 this was working.
But even though I was eating GF, DF (and the rest) and took my entocort everyday, I still ended up in a new flare. I tried a higher dosage of medication (one in morning and one in the afternoon) but I have the idea it doesn't do much and give me terrible headaches. So than I had to choices other types of medication or looking at my food again.
I have to admit it took me a about a week to really stick to my new food routine: I even skipped banana's and apple sauce. But I am now in my third day of the RTCFO diet. rice, tea, chicken, fish and (a little) olive oil. And now the good news comes: IT WORKS.
I don't find it easy to stick to this diet 100%. In the supermarket I was already looking for rice pops, thought about rice cakes with jam (NO, any thing that contains fruit seems to be wrong at the moment), rice milk (normally yes, but in this case NO since it contains carrageen). NO, NO, NO. I am getting used to it now and the result of course is the best motivation.
Before I started RTCFO diet, I was in a really bad flare (despite one entocort a day). Worse than it ever had been.
I am still amazed how well this works. It's not just the D that is over and no more bathroom visits 5 times a day. But also almost as if the fatigue is getting less. Although the entocort was capable of suppressing the symptoms quite well for one and half year, I never have felt like my old self again. Low(er) energy level.
I really hope that this last diet change will bring me the 100% remission I am longing for so desperate. Of course with this disease you never know how and what will happen, but so far so good.
diet versus medication
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
diet versus medication
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Harma,
Congratulations! That's wonderful news.
There's quite a bit of fiber in bananas and applesauce. Maybe the fiber was what was keeping you from 100% remission.
I hope you have continued success, and I hope that this time your gut will be able to heal.
Tex
Congratulations! That's wonderful news.
There's quite a bit of fiber in bananas and applesauce. Maybe the fiber was what was keeping you from 100% remission.
I hope you have continued success, and I hope that this time your gut will be able to heal.
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.
Hello Harma!
Well, this is encouraging news! I'm so glad you found a menu that works for now. A thought - have you considered getting the MRT (mediator release test)? I recall that it is possible to get it somewhere in Europe. Your food issues are similar to mine (even the carrageenan), and it wasn't until 10 years after diagnosis when I got the MRT results that I have been able to gain complete control of the gut with diet alone.
Really, I would never have guessed that I reacted to yellow squash, celery, carrot, raspberries, maple syrup, vanilla, almonds, cashews, pork, lamb, etc. But since eliminating all of my 35 or so reactive foods (in addition to gluten, dairy, soy, yeast, corn, etc.), my BMs are NORMAL!!!! What a treat!
Your diet for now is working and that's great. But at some point you will need to eat fruits/veggies/etc. again. The MRT might really facilitate that process by taking some guesswork out.
Hope you are able to enjoy your adopted country despite the recent flare.
Hugs,
Polly
Well, this is encouraging news! I'm so glad you found a menu that works for now. A thought - have you considered getting the MRT (mediator release test)? I recall that it is possible to get it somewhere in Europe. Your food issues are similar to mine (even the carrageenan), and it wasn't until 10 years after diagnosis when I got the MRT results that I have been able to gain complete control of the gut with diet alone.
Really, I would never have guessed that I reacted to yellow squash, celery, carrot, raspberries, maple syrup, vanilla, almonds, cashews, pork, lamb, etc. But since eliminating all of my 35 or so reactive foods (in addition to gluten, dairy, soy, yeast, corn, etc.), my BMs are NORMAL!!!! What a treat!
Your diet for now is working and that's great. But at some point you will need to eat fruits/veggies/etc. again. The MRT might really facilitate that process by taking some guesswork out.
Hope you are able to enjoy your adopted country despite the recent flare.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Yes Tex that is certainly good news, it still surprises me, how much differences it makes. Honestly I don't think it is the fibre, it's something else in fruit and veggies. Maybe it was the juice I was drinking now and then. Lemon? Pine apple? For now I will stick to this diet for a while and then step by step introduce new food items and see how I react on it.
Yes Polly the MRT has crossed my mind last six months, but since I was still doing okay on my diet and meds I didn't see the need for it and money is an issue too at the moment (I just can't afford it now), but maybe in future.
Also I have been thinking about why I seem to react on so many things, as some others do here too, I had to think about you Polly, Gloria and myself of course. I just checked your MC genes and saw you and Gloria are a double 1,1 (DQ 1,1), I am a DQ 3,3. Also I looked up what this means according to Dr Fine’s website and this is what it says:
My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present togetherr, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).
Could this be an explanation why we seem to react on anything? Is there any logic in my thinking?
Yes Polly the MRT has crossed my mind last six months, but since I was still doing okay on my diet and meds I didn't see the need for it and money is an issue too at the moment (I just can't afford it now), but maybe in future.
Also I have been thinking about why I seem to react on so many things, as some others do here too, I had to think about you Polly, Gloria and myself of course. I just checked your MC genes and saw you and Gloria are a double 1,1 (DQ 1,1), I am a DQ 3,3. Also I looked up what this means according to Dr Fine’s website and this is what it says:
My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present togetherr, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).
Could this be an explanation why we seem to react on anything? Is there any logic in my thinking?
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Harma,
Your speculation may be correct, but I think there's no way to be certain. I'm a 'double DQ2' but it seems that I have not up until now had true celiac disease, and have been fortunate that my MC course so far has not been extra severe, which is what Dr. Fine reports the research has shown. (Of course, I am not out of the woods, so I may about to stop tolerating things that I have believed are working for me.)
I definitely react to almost anything, once I am reacting. Some of those things seem OK for me when things calm down. I hope that will be the case for you - but the great news is that your limited diet is working. Very glad to hear this good result. Maybe some of those foods you have cut can come back in the diet - maybe some are 'out' forever.
I am thinking of MRT at some point, too. I am waiting to hear about the new version that may be coming out soon.
Congratulations on getting this flare reined back in,
Sara
Your speculation may be correct, but I think there's no way to be certain. I'm a 'double DQ2' but it seems that I have not up until now had true celiac disease, and have been fortunate that my MC course so far has not been extra severe, which is what Dr. Fine reports the research has shown. (Of course, I am not out of the woods, so I may about to stop tolerating things that I have believed are working for me.)
I definitely react to almost anything, once I am reacting. Some of those things seem OK for me when things calm down. I hope that will be the case for you - but the great news is that your limited diet is working. Very glad to hear this good result. Maybe some of those foods you have cut can come back in the diet - maybe some are 'out' forever.
I am thinking of MRT at some point, too. I am waiting to hear about the new version that may be coming out soon.
Congratulations on getting this flare reined back in,
Sara
Yes, I believe that you're interpreting the information correctly.Harma wrote:Could this be an explanation why we seem to react on anything? Is there any logic in my thinking?
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.
Harma,
Your post is very timely for me. I have been off Entocort completely for 9 weeks, or 63 days tomorrow, so I'll be one week past the 56 days we have designated as the threshold.
It's been interesting to see that I have begun to deteriorate more now that I'm past the threshold. Yesterday I had a small accident - not because I didn't make it to the bathroom in time - I think I thought I was passing gas, but I passed something else.
Norman is not a frequent visitor. He'll only show up after I've taken Imodium. I'm not at the point where I want to go back on Entocort. Imodium works quite well for me and I'm still taking only 1/2 pill once a week.
But I can't help but wonder if I'll ever figure out all of my intolerances, or even if food is the total problem. Since I've started tapering Entocort, I've given up additional foods: ghee, margarine, coconut, nut butter, and Brussel sprouts and there isn't much left to eliminate. I've replaced Brussel sprouts with broccoli - I'm not sure how well I tolerate them. It seems that each time I forsake a food, I have temporary improvement, but within a short time, I have to consider another food. I'm presently eating 12 different foods.
After four years of trying, I'm ready to throw in the towel with further food elimination. I'm staying with my diet, but it isn't sufficient to keep me in remission by itself. It was, however, when I was on Entocort. I was doing great then, and Imodium also keeps things under control now.
Your post is very timely for me. I have been off Entocort completely for 9 weeks, or 63 days tomorrow, so I'll be one week past the 56 days we have designated as the threshold.
It's been interesting to see that I have begun to deteriorate more now that I'm past the threshold. Yesterday I had a small accident - not because I didn't make it to the bathroom in time - I think I thought I was passing gas, but I passed something else.
Norman is not a frequent visitor. He'll only show up after I've taken Imodium. I'm not at the point where I want to go back on Entocort. Imodium works quite well for me and I'm still taking only 1/2 pill once a week.But I can't help but wonder if I'll ever figure out all of my intolerances, or even if food is the total problem. Since I've started tapering Entocort, I've given up additional foods: ghee, margarine, coconut, nut butter, and Brussel sprouts and there isn't much left to eliminate. I've replaced Brussel sprouts with broccoli - I'm not sure how well I tolerate them. It seems that each time I forsake a food, I have temporary improvement, but within a short time, I have to consider another food. I'm presently eating 12 different foods.
After four years of trying, I'm ready to throw in the towel with further food elimination. I'm staying with my diet, but it isn't sufficient to keep me in remission by itself. It was, however, when I was on Entocort. I was doing great then, and Imodium also keeps things under control now.
I am concerned that after being on this restricted diet for over a year, I am missing some important nutrients. I know that I am borderline low in potassium and I'm unable to eat any vegetables which provide a high quantity of it. I began taking a supplement, but it only provides 3% of the RDA. The MRT was useful for me to a point.Polly wrote:Your diet for now is working and that's great. But at some point you will need to eat fruits/veggies/etc. again. The MRT might really facilitate that process by taking some guesswork out.
You never know what you can do until you have to do it.
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TooManyHats
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