I agree with you Gloria, I mean with your goal settings, although I would love to stop taking the entocort, having more normans, quiet bowels are more important. Gaining weight is in my case not an issue.
One thing that has played a key role in my recovery process is stop experimenting with food. In my case any time things did go a bit worse, it was always due to new things introduced in the diet. Since I gave that up in late spring 2010, things really got better. It does not mean it is always easy, but it are those small achievements now and than (like my first norman since looong time) that makes it all worth it.
It is almost a combination of achieving remission and beating this disease and a totally new lifestyle.
LIST OF FOODS I'VE TESTED OR ELIMINATED
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Gloria,
I also think you are choosing the best path. Especially since you seem to have little to no difficulty tolerating the Entocort. As Tex says, it's interesting how quickly docs want to stop Entocort when we have such a different experience here.
You are achieving your goals and feeling more relaxed about your progress.........sounds like a winning combination to me! 
Love,
Polly
I also think you are choosing the best path. Especially since you seem to have little to no difficulty tolerating the Entocort. As Tex says, it's interesting how quickly docs want to stop Entocort when we have such a different experience here.
You are achieving your goals and feeling more relaxed about your progress.........sounds like a winning combination to me! Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi, I am new. My name is Sue but go by Catarific. I have had tons of problems with so many foods for months now. The ones I found problematic are:
Fructose
Any fruit whether fresh, dried or canned
Corn Syrup
Corn Chips
Larabars (I think due to the dried fruit used)
Chocolate (except for a minute amount)
Too much sugar
More than 2 slices of gluten-free bread (can eat bread but only in small amounts)
Rice
Cereals (Gluten free - but only a limited amount)
Silk Almond Vanilla or Chocolate Milk - very high sugar content (have not tried the plain one)
Potatoes
Rice
Decafeinated coffee (maybe can have 1 cup during the week)
Betty Crocker gluten free cake mixes (or very little - I think due to the high butter needed for the mix and the sugar content)
I use Stevia as a sugar replacement
No cookies, cakes, pudding or ice cream even substitutes (due to sugar, Splenda, or sorbitol).
No splenda or sorbitol
No nuts
Can Eat:
Red Meat (Roast Beef, Steak, Hamburger - as long as lean)
Poultry (Chicken and Turkey without skin)
Bumblebee Tuna Fish with Hellman's Mayonaise and limited amount of lettuce added. I cannot eat celery or onion - digestion issues
Egg Whites
Gluten Free crackers (small amount)
Gluten Free bread (small amount)
Fructose
Any fruit whether fresh, dried or canned
Corn Syrup
Corn Chips
Larabars (I think due to the dried fruit used)
Chocolate (except for a minute amount)
Too much sugar
More than 2 slices of gluten-free bread (can eat bread but only in small amounts)
Rice
Cereals (Gluten free - but only a limited amount)
Silk Almond Vanilla or Chocolate Milk - very high sugar content (have not tried the plain one)
Potatoes
Rice
Decafeinated coffee (maybe can have 1 cup during the week)
Betty Crocker gluten free cake mixes (or very little - I think due to the high butter needed for the mix and the sugar content)
I use Stevia as a sugar replacement
No cookies, cakes, pudding or ice cream even substitutes (due to sugar, Splenda, or sorbitol).
No splenda or sorbitol
No nuts
Can Eat:
Red Meat (Roast Beef, Steak, Hamburger - as long as lean)
Poultry (Chicken and Turkey without skin)
Bumblebee Tuna Fish with Hellman's Mayonaise and limited amount of lettuce added. I cannot eat celery or onion - digestion issues
Egg Whites
Gluten Free crackers (small amount)
Gluten Free bread (small amount)
Hi Sue,
Welcome to the board. Wow! You've listed a lot of food problems. I ended up having to avoid virtually all of those foods, also, in order to reach remission, (except that I was able to eat potatoes and rice). I avoided them for almost 2 years, and then I was able to slowly reintroduce most of them back into my diet, except for gluten, (which I never tried), and sorbitol, and certain nuts.
Have you considered the LEAP program, which is based on dietitian recommended diet selections for a food elimination diet, based on Mediator Release Testing, (MRT)? You appear to be a good candidate for that program. Quite a few members here who have many food sensitivities have found that program to be very helpful. One of our members who uses it herself, is an MD, and another is a licensed dietitian. You can read some of their posts here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
Again, welcome aboard, and I hope you can find the solutions here, that you are seeking.
Tex (Wayne)
Welcome to the board. Wow! You've listed a lot of food problems. I ended up having to avoid virtually all of those foods, also, in order to reach remission, (except that I was able to eat potatoes and rice). I avoided them for almost 2 years, and then I was able to slowly reintroduce most of them back into my diet, except for gluten, (which I never tried), and sorbitol, and certain nuts.
Have you considered the LEAP program, which is based on dietitian recommended diet selections for a food elimination diet, based on Mediator Release Testing, (MRT)? You appear to be a good candidate for that program. Quite a few members here who have many food sensitivities have found that program to be very helpful. One of our members who uses it herself, is an MD, and another is a licensed dietitian. You can read some of their posts here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
Again, welcome aboard, and I hope you can find the solutions here, that you are seeking.
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.
Hi Sue,
Welcome to the board!
You do have a long list of intolerances. I agree with Tex - you might want to check out the MRT testing. I first had the Enterolab testing which verified gluten, egg, casein, yeast and soy intolerances. MRT uses a different testing method and tests for 150 foods and chemicals. Their results for off-limits foods is pretty reliable. I haven't found the acceptable foods list to be as reliable, but it's a starting point.
Your intolerances sound similar to mine, with a few differences. You might want to look at Pat's list of intolerances or even PM her. She is also unable to eat fructose or sugar, and she can't eat rice.
Gloria
Welcome to the board!
You do have a long list of intolerances. I agree with Tex - you might want to check out the MRT testing. I first had the Enterolab testing which verified gluten, egg, casein, yeast and soy intolerances. MRT uses a different testing method and tests for 150 foods and chemicals. Their results for off-limits foods is pretty reliable. I haven't found the acceptable foods list to be as reliable, but it's a starting point.
Your intolerances sound similar to mine, with a few differences. You might want to look at Pat's list of intolerances or even PM her. She is also unable to eat fructose or sugar, and she can't eat rice.
Gloria
You never know what you can do until you have to do it.
Sue,
You do sound a lot like me. Not being able to eat sugar or fruit is a curse. I don't even tolerate stevia. Nothing sweet! I don't even tolerate toothpaste because of the sorbitol or saccharin. ( I use Tom's Children's Silly Strawberry) Mary Beth thinks that as I heal, and I have started healing, I should be able to add back in some fruits. I can't wait! I have just eliminated potatoes.
Quinoa and buckwheat and Chebe Bread ( a tapioca product ) are all the complex carbs that I think I can tolerate so far. I am still working on the Leap program. It's been 2 months today. What kind of gluten free cracker do you eat? All the ones I have found have rice in them. Rice seems to be the worst for me. I don't tolerate chicken either. I do eat pork. We are all different so I don't expect that you are just like me. Welcome to the board!
Pat
You do sound a lot like me. Not being able to eat sugar or fruit is a curse. I don't even tolerate stevia. Nothing sweet! I don't even tolerate toothpaste because of the sorbitol or saccharin. ( I use Tom's Children's Silly Strawberry) Mary Beth thinks that as I heal, and I have started healing, I should be able to add back in some fruits. I can't wait! I have just eliminated potatoes.
Quinoa and buckwheat and Chebe Bread ( a tapioca product ) are all the complex carbs that I think I can tolerate so far. I am still working on the Leap program. It's been 2 months today. What kind of gluten free cracker do you eat? All the ones I have found have rice in them. Rice seems to be the worst for me. I don't tolerate chicken either. I do eat pork. We are all different so I don't expect that you are just like me. Welcome to the board!Pat
You know - I never thought of the Stevia as being a problem - I will try and eliminate this as well and see....
And funny - the crackers are rice crackers but they have so few calories and I only eat maybe 4 of them and am okay. If I eat more - than I have a problem. Only thing is - I am always hungry - I really do miss starches because they made me feel full.
I do eat chicken but sometimes turkey gives me a problem. Who knows - maybe the chicken does too but I haven't realized it. Last night I ate some lean hamburger - and that gave me a problem - yet on another night it didn't. It seems it is not only the food but how the food is combined with other foods eaten during the day too.
I notice my problems always start about 8 hours after dinner - in the middle of the night - so I am not sure if it was that days food intake or the previous day.
Aaargh!
And funny - the crackers are rice crackers but they have so few calories and I only eat maybe 4 of them and am okay. If I eat more - than I have a problem. Only thing is - I am always hungry - I really do miss starches because they made me feel full.
I do eat chicken but sometimes turkey gives me a problem. Who knows - maybe the chicken does too but I haven't realized it. Last night I ate some lean hamburger - and that gave me a problem - yet on another night it didn't. It seems it is not only the food but how the food is combined with other foods eaten during the day too.
I notice my problems always start about 8 hours after dinner - in the middle of the night - so I am not sure if it was that days food intake or the previous day.
Aaargh!
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Good Morning Sue and WELCOME!
Sorry you had to meet us like this but glad you found the site and I am sure with time and of course, effort, on your part you will find the path to remission. There are many of us that have extensive lists of intolerances and over time with gut healing you should be able to add them back in. I know what it is like to have so many and still at times after all the time with this disease I have been able to add some back in to my diet with caution and not overeating them and have found new ones to eliminate. Tapioca being the newest.
Please stick around and I am sure you will see progress.
Maggie
Sorry you had to meet us like this but glad you found the site and I am sure with time and of course, effort, on your part you will find the path to remission. There are many of us that have extensive lists of intolerances and over time with gut healing you should be able to add them back in. I know what it is like to have so many and still at times after all the time with this disease I have been able to add some back in to my diet with caution and not overeating them and have found new ones to eliminate. Tapioca being the newest.
Please stick around and I am sure you will see progress.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Good Afternoon , I am new to all of this
I am happy I found this web site as the info I received from my doctor does not seem to be helping me. I am taking Ascol and it does not seem to be helping at all. Should I have the doctor test me for food intolerances? I have been working with a registered dietitian and I feel she does not have experience with Microscopic Colitis. My primary doctor said there is a shot available for this- has anyone tried that option? Of course my medical insurance probably will not cover the shot. It sounds like remission may be a long way off. Thanks
Hi,
Welcome to the board. I doubt that it will do any good to ask your doctor to test you for food sensitivities, since most GI specialists still mistakenly believe that diet has absolutely nothing to do with MC. A few are beginning to catch on, but the odds are not good, at the moment. The only tests for food sensitivities with a high degree of sensitivity and accuracy, are stool tests offered by a lab in Dallas, TX, (Enterolab). They offer tests for various foods that commonly cause problems, and the test cost includes sample collection kits that allow you to send your sample directly to them, (by overnight express delivery), and currently, they are, IMO, the only game in town, for such testing.
https://www.enterolab.com/
There is also a testing system known as mediator release testing, (MRT), which is a blood test, combined with a special food trial program coordinated with specially trained dieticians, that seems to give good results, but it requires a long, drawn out food testing program, in order to determine which foods are actually safe to eat. Most people have the best success beginning with the tests at Enterolab, (because those results require no further testing - you simply remove those foods from your diet). If you're still having issues after giving your diet changes sufficient time to allow your gut to heal, then the MRT testing can be used to ferret out the minor details of food sensitivities that are not covered by the Enterolab tests.
That said, if you can persuade your doctor to order the Enterolab tests for you, you have a better chance that your insurance will pay for the tests, though not all insurance companies will pay for stool testing for food sensitivities. Most of us end up ordering the tests ourselves, and paying for them out of our pockets, because they are by far the best testing option available, for food sensitivity testing. I'm not sure if any insurance will pay for the MRT/LEAP program, or not. Maybe someone else can fill in those details.
The LEAP program that is associated with the test results has to be administered by a specially-trained dietitian, licensed in your home state. If you choose to try the MRT/LEAP program, Mary Beth can recommend a dietitian, (or dietitians), in your area, who is qualified to work with this program. Mary Beth is one of our members, (she also has MC), and she's a licensed dietitian, (in the state of Texas), and she has pointed out that most dietitians know virtually nothing about helping patients with MC. That requires special training that they are not likely to receive, normally.
There is no such thing as a shot that will cure MC. If there were, do you think that we would all be here wasting time figuring out complicated diets and treatment programs?
Your doctor may be thinking about one of the anti-TNF drugs, which are powerful immune system suppressants, (such as Remicade, Embrel, Humira, etc.). Those drugs have serious side effects, and they seem to be helpful for patients with Crohn's disease, and possibly ulcerative colitis, but so far, our members who have only MC, who have tried them, have derived no benefits from trying to use those drugs to control their MC symptoms. Drugs in that class should only be used as a last resort, because their negative effect on the immune system, makes one much more vulnerable to infection from various pathogens, and there are other health risks as well.
If you don't mind taking drugs, (rather than changing your diet), to control your symptoms, Entocort is a much better choice of medications than Asacol. Entocort is much more effective for treating MC, and it's still relatively safe, as corticosteroids go, (it's much, much safer than prednisone, for example).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I doubt that it will do any good to ask your doctor to test you for food sensitivities, since most GI specialists still mistakenly believe that diet has absolutely nothing to do with MC. A few are beginning to catch on, but the odds are not good, at the moment. The only tests for food sensitivities with a high degree of sensitivity and accuracy, are stool tests offered by a lab in Dallas, TX, (Enterolab). They offer tests for various foods that commonly cause problems, and the test cost includes sample collection kits that allow you to send your sample directly to them, (by overnight express delivery), and currently, they are, IMO, the only game in town, for such testing.
https://www.enterolab.com/
There is also a testing system known as mediator release testing, (MRT), which is a blood test, combined with a special food trial program coordinated with specially trained dieticians, that seems to give good results, but it requires a long, drawn out food testing program, in order to determine which foods are actually safe to eat. Most people have the best success beginning with the tests at Enterolab, (because those results require no further testing - you simply remove those foods from your diet). If you're still having issues after giving your diet changes sufficient time to allow your gut to heal, then the MRT testing can be used to ferret out the minor details of food sensitivities that are not covered by the Enterolab tests.
That said, if you can persuade your doctor to order the Enterolab tests for you, you have a better chance that your insurance will pay for the tests, though not all insurance companies will pay for stool testing for food sensitivities. Most of us end up ordering the tests ourselves, and paying for them out of our pockets, because they are by far the best testing option available, for food sensitivity testing. I'm not sure if any insurance will pay for the MRT/LEAP program, or not. Maybe someone else can fill in those details.
The LEAP program that is associated with the test results has to be administered by a specially-trained dietitian, licensed in your home state. If you choose to try the MRT/LEAP program, Mary Beth can recommend a dietitian, (or dietitians), in your area, who is qualified to work with this program. Mary Beth is one of our members, (she also has MC), and she's a licensed dietitian, (in the state of Texas), and she has pointed out that most dietitians know virtually nothing about helping patients with MC. That requires special training that they are not likely to receive, normally.
There is no such thing as a shot that will cure MC. If there were, do you think that we would all be here wasting time figuring out complicated diets and treatment programs?
Your doctor may be thinking about one of the anti-TNF drugs, which are powerful immune system suppressants, (such as Remicade, Embrel, Humira, etc.). Those drugs have serious side effects, and they seem to be helpful for patients with Crohn's disease, and possibly ulcerative colitis, but so far, our members who have only MC, who have tried them, have derived no benefits from trying to use those drugs to control their MC symptoms. Drugs in that class should only be used as a last resort, because their negative effect on the immune system, makes one much more vulnerable to infection from various pathogens, and there are other health risks as well.If you don't mind taking drugs, (rather than changing your diet), to control your symptoms, Entocort is a much better choice of medications than Asacol. Entocort is much more effective for treating MC, and it's still relatively safe, as corticosteroids go, (it's much, much safer than prednisone, for example).
Again, welcome aboard, and please feel free to ask anything.
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.
Welcome, ljjlinda,
You've come to the right place for help with MC. Read and read some more. Enterolab testing is very helpful and if that doesn't do the trick then you may have multiple intolerances and may need to look into the MRT testing. www.nowleap.com. Some only need to eliminate a drug like NSAIDS, some just eliminate gluten but some need to eliminate more. Good Luck and ask all the questions you need to.
Pat
You've come to the right place for help with MC. Read and read some more. Enterolab testing is very helpful and if that doesn't do the trick then you may have multiple intolerances and may need to look into the MRT testing. www.nowleap.com. Some only need to eliminate a drug like NSAIDS, some just eliminate gluten but some need to eliminate more. Good Luck and ask all the questions you need to.
Pat
Sue and Gloria
Thanks for posting your lists. I need to take the time to do this but my list is very similar to both of yours. No fruits, No vegetables except okra and lettuce, very low fat meats (cutting out fats helps the most), no legumes, no nuts(to much fat?). I break out in a rash if I eat night shades.
I eat a lot of rice including rice dream (organic-supposed to be gluten free-called the company)(my wife makes a delicious rice biscuit), but now I am finding that the rice causes me to lose energy and I am cutting back on rice.
I do eat any low fat meat without preservatives(mostly beef, chicken, buffalo and ostrich), salmon, egg whites, dextrose for sugar (in biscuits).
Wow, thats a short list of foods I do eat but I seem to be in remission and improving. I have been on this diet getting rid of foods that bother me for about three years. About 2 month ago I realized that the meat I was eating had to much fat. Cutting that out was the best thing I did.
I am trying to add carrots and blue berries back and I think they will be fine. Bananas will be the next fruit I add back.
Thanks again, Ray
Thanks for posting your lists. I need to take the time to do this but my list is very similar to both of yours. No fruits, No vegetables except okra and lettuce, very low fat meats (cutting out fats helps the most), no legumes, no nuts(to much fat?). I break out in a rash if I eat night shades.
I eat a lot of rice including rice dream (organic-supposed to be gluten free-called the company)(my wife makes a delicious rice biscuit), but now I am finding that the rice causes me to lose energy and I am cutting back on rice.
I do eat any low fat meat without preservatives(mostly beef, chicken, buffalo and ostrich), salmon, egg whites, dextrose for sugar (in biscuits).
Wow, thats a short list of foods I do eat but I seem to be in remission and improving. I have been on this diet getting rid of foods that bother me for about three years. About 2 month ago I realized that the meat I was eating had to much fat. Cutting that out was the best thing I did.
I am trying to add carrots and blue berries back and I think they will be fine. Bananas will be the next fruit I add back.
Thanks again, Ray
Hi Ray,
I'm surprised that you can tolerate lettuce. Very, very, very few of us can tolerate lettuce until after our gut heals. Lettuce apparently contains some of the most irritating fiber in the plant world.
Good for you for being able to fine tune your diet so well. I hope that it continues to work for you, and that you're able to continue to add foods back into your diet, as you are planning.
Tex
I'm surprised that you can tolerate lettuce. Very, very, very few of us can tolerate lettuce until after our gut heals. Lettuce apparently contains some of the most irritating fiber in the plant world.
Good for you for being able to fine tune your diet so well. I hope that it continues to work for you, and that you're able to continue to add foods back into your diet, as you are planning.
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.
Tex,
I've been having small amounts of lettuce, infrequently. So far, so good. I'm not going to push my luck, though. A friend served a delicious lamb dish cooked with romaine lettuce a couple of weeks ago, and when I tolerated the cooked lettuce, I was emboldened to attempt a little bit of salad. At this time of year, our salads are typically mixed with other greens - maybe that has helped?
Ray,
I am very impressed with your fine-tuning and diligence. I seem to tolerate rice in that it doesn't give me D, but I did notice fatigue and bloating with it (when I was sicker, some time back), so have discontinued it for now. I added that new Enterolab test to my recent order, and will post the results when they come in. I believe they are considered less definitive than those for gluten, casein, soy, yeast and eggs. I was thinking of making homemade rice milk, and may try that if my test results indicate no reactivity.
I hope the the new foods you are adding treat you right, and you continue to improve. Congratulations on getting to remission.
Sara
I've been having small amounts of lettuce, infrequently. So far, so good. I'm not going to push my luck, though. A friend served a delicious lamb dish cooked with romaine lettuce a couple of weeks ago, and when I tolerated the cooked lettuce, I was emboldened to attempt a little bit of salad. At this time of year, our salads are typically mixed with other greens - maybe that has helped?
Ray,
I am very impressed with your fine-tuning and diligence. I seem to tolerate rice in that it doesn't give me D, but I did notice fatigue and bloating with it (when I was sicker, some time back), so have discontinued it for now. I added that new Enterolab test to my recent order, and will post the results when they come in. I believe they are considered less definitive than those for gluten, casein, soy, yeast and eggs. I was thinking of making homemade rice milk, and may try that if my test results indicate no reactivity.
I hope the the new foods you are adding treat you right, and you continue to improve. Congratulations on getting to remission.
Sara