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Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thank you for all of the advise everyone, I do agree that anything I eat is not worth the missery I can go through. I think that because I was in remission for 3 weeks now (probably because of the Lialda, and maybe the Sam-e) I was hoping that I wouldn't have to make any changes. I am realizing now, however, that it will be in my best interest to make the changes. I can't stay on Lialda forever, and my fear has been that it will return right after I stop. I will make the changes beforehand. I will have to do some research and find out what I can eat. Someone mentioned Tuna Fish, is that bad? I eat seafood, lots of chicken, and occassionally red meat. I eat yogurt, usually low fat Yoplait Creamy Vanilla, and I eat two bananas per day. I eat peanut butter every morning for breakfast on a rice cake with a banana sliced on top. I eat a bowl of yogurt with a banana sliced in it for lunch, usually with PRETZELS, and some kind of meat for dinner on FLAT BREAD. I know the big no no's like pretzels and flat bread, but will have to research the others. I have started eating more potatoe chips in lue of pretzels. I'm a texture kind of guy and like some crunchy when I eat.
Again everyone, thank you. I'm learning :)
Again everyone, thank you. I'm learning :)
Unless you're luckier than most of us, you'll probably have problems with the casein in the yogurt, after you discontinue the Lialda. Quite a few of us would probably have trouble with that many bananas each day, but YMMV.
Another crunchy snack that's safe or us is pork rinds, believe it or not. They also have zero carbs, and no transfats.
Tex
Another crunchy snack that's safe or us is pork rinds, believe it or not. They also have zero carbs, and no transfats.
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.
I haven't been in remission yet, but prior to going on this elimination diet I went gluten free and bovine dairy free. I was eating goat's milk yogurt and cheese. Oh, how I miss that!
I discovered there are gluten free crunchy snacks. Even pretzels. And some delicious crackers. Plenty of gluten free crunch. Even decent gluten free bread. It's all very expensive though. There are recipes for gluten free crackers and bread in the Dee's kitchen area if you are into baking. Given the price of those products I think I will try when I get my MC under control, and FINALLY get to remission.
I discovered there are gluten free crunchy snacks. Even pretzels. And some delicious crackers. Plenty of gluten free crunch. Even decent gluten free bread. It's all very expensive though. There are recipes for gluten free crackers and bread in the Dee's kitchen area if you are into baking. Given the price of those products I think I will try when I get my MC under control, and FINALLY get to remission.
Well, I had one episode this morning! The first one in a month. It seems my fears may be coming to fruition. It hasn't happened again today though, so I'm hopeful. Before I went into remission, it would be anywhere from 5 to 15 times a day. I did eat some things last night that may have set it off. Friday night I play cards with the family and we ate Bugels and egg salad sandwiches, yes on bread (potatoe rolls). I was stressing this morning, but I'm trying not to worry too much. Yesterday I was doing some research online and what has me so confused is that some websites say it's good to eat grains and high fiber foods, while others say not to. One site stated that food really has nothing to do with the condition, but to watch what you eat while in a flare up. I know, and respect, all of the advise that I've gotten from this forum, I'm just so confused as to what to do. The past month that I've been in remission, I've been eating the same as I always have and have been fine. I have an appointment with my Gastro on the 14th of November and will get the results for my Celiac Panel, however, I keep hearing of false positives. Anyway, I hope it just a one time thing this morning. We will see.
Rhyes,
Typically with celiac, there are false negatives, rather than false positives. That is, a patient will be told they do not have celiac disease, sometimes many times over many years, when in fact they do - and eventually test positive for it. (That means they have spent years eating something that has greatly deteriorated their health, because their doctors have erroneously insisted gluten can have nothing to do with their symptoms - and doctors even know that they miss a lot of celiac diagnoses, so to me this is unconscionable and a violation of their Hippocratic oath.)
I have to ask myself... do you know *anyone* other than "experts" who believes that upset tummies are unconnected to food??? Every third commercial on TV is for some product you're supposed to be that makes it easier to eat... pizza, or spices, or beer, or whatever foods the ad is showing. Ask 30 normal people whether any foods ever bother them, and 29 of them will say yes. Before MC, I probably had fewer digestive "issues" than a lot of my friends. Now I realize how many people are walking around with purses and medicine cabinets full of antacids and Pepcid and mylanta and Pepto and things I had never heard of. Most people with a 'sensitive stomach' will list what foods trigger them. Those foods may change over time, and a lot of people don't suspect wheat because it's such a huge part of the typical diet.
I don't know if this is a scientific fact, but it has felt that way in my recovery: every time I eat gluten, it's a setback on the path toward healing and remission. Some setbacks are worse than others, for sure. Hopefully in time you'll find enjoyable foods for family cards night that don't make you sick. I can't imagine risking my recovery for the best gourmet meal on earth, and certainly not for Bugles (potato chips are GF!). I realize you don't want to inconvenience your family, but I'm sure they don't want you ruining your long-term health, either.
Hope you've dodged a bullet here!
Typically with celiac, there are false negatives, rather than false positives. That is, a patient will be told they do not have celiac disease, sometimes many times over many years, when in fact they do - and eventually test positive for it. (That means they have spent years eating something that has greatly deteriorated their health, because their doctors have erroneously insisted gluten can have nothing to do with their symptoms - and doctors even know that they miss a lot of celiac diagnoses, so to me this is unconscionable and a violation of their Hippocratic oath.)
I have to ask myself... do you know *anyone* other than "experts" who believes that upset tummies are unconnected to food??? Every third commercial on TV is for some product you're supposed to be that makes it easier to eat... pizza, or spices, or beer, or whatever foods the ad is showing. Ask 30 normal people whether any foods ever bother them, and 29 of them will say yes. Before MC, I probably had fewer digestive "issues" than a lot of my friends. Now I realize how many people are walking around with purses and medicine cabinets full of antacids and Pepcid and mylanta and Pepto and things I had never heard of. Most people with a 'sensitive stomach' will list what foods trigger them. Those foods may change over time, and a lot of people don't suspect wheat because it's such a huge part of the typical diet.
I don't know if this is a scientific fact, but it has felt that way in my recovery: every time I eat gluten, it's a setback on the path toward healing and remission. Some setbacks are worse than others, for sure. Hopefully in time you'll find enjoyable foods for family cards night that don't make you sick. I can't imagine risking my recovery for the best gourmet meal on earth, and certainly not for Bugles (potato chips are GF!). I realize you don't want to inconvenience your family, but I'm sure they don't want you ruining your long-term health, either.
Hope you've dodged a bullet here!
Rhyes,
I was told I am NOT sensitive to gluten by my doc, and that food plays no part in MC. I got the results of my Enterolab tests yesterday, and they showed that I am HIGHLY reactive to gluten, soy, rice, corn, dairy, pork, chicken, almonds, cashew...and I have probably forgotten a few.
Since I have been living on chicken and rice and wondering why I wasn't getting any better I would think 2x before testing yourself with actual gluten.
I am going to try gluten free oats. I am hoping that I won't react to them. I also want to try goat's milk cheese.
And I am going to bake, with Dee's help, something that is sorta, kinda reminiscent of bread with the stuff she told me to buy. This is NOT the way I wanted to be in my advancing age, but I have been SO miserable with the MC that I have to adapt.
I was told I am NOT sensitive to gluten by my doc, and that food plays no part in MC. I got the results of my Enterolab tests yesterday, and they showed that I am HIGHLY reactive to gluten, soy, rice, corn, dairy, pork, chicken, almonds, cashew...and I have probably forgotten a few.
Since I have been living on chicken and rice and wondering why I wasn't getting any better I would think 2x before testing yourself with actual gluten.
I am going to try gluten free oats. I am hoping that I won't react to them. I also want to try goat's milk cheese.
And I am going to bake, with Dee's help, something that is sorta, kinda reminiscent of bread with the stuff she told me to buy. This is NOT the way I wanted to be in my advancing age, but I have been SO miserable with the MC that I have to adapt.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
I will second the opinion of many others: food has A LOT to do with our symptoms. To my way of thinking, remission that comes about only because of medication that's suppressing symptoms is not a permanent solution. Think of it this way: if I have a nasty sinus infection, and the doctor gives me antihistamines and decongestants and painkillers so I feel better than I did, but I never take an antibiotic for the infection, I'm not really better. Eventually, if I quit taking all that medicine, my symptoms will be back, because the source--the infection--never went away. In the meantime, I may develop other problems because I have an infection running unchecked in my body. This is the way I look at MC. If I follow my doctor's advice and just take medication to control my symptoms, and avoid spicy, greasy and high-fiber foods when I'm feeling lousy, I will be able to function fairly well, but I'm still sick. This is how I lived for several years. When I finally started eliminating suspicious foods and medications, I got relief from the symptoms without taking something to control them. I have been in remission without drugs for three weeks, and I feel better in general: aside from not being in the bathroom all the time, I'm no longer WORRIED about being in the bathroom all the time, I'm not as tired and irritable, my clothes fit better. Immodium doesn't do all that for me! 
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hello everyone, I hope everyone is doing well! Well, I have been up and down with this. I was in remission for over a month, then a relapse for about three days, then back to remission, now I've been really bad for about two weeks. It seemed to come back with a vengeance, or I just forgot what this is like. Anyway, I had an appointment with my Gastro yesterday. They told me that my Celiac Panel came back fine. I've been playing with my diet, but nothing seems to change my symptoms. I have a prescription for Prednisone. I'm doing a taper of 20mg's for 2 days, then 15 for 2 days, then 10 for 2 days, then 5 for 2 days. Has anyone taken this, and if so, did you have any reactions or side effects and did it work on such a short taper? Any information would be grateful. I'm still getting used to having my old friend back ;) although I can't say I missed it! I only wish I had enjoyed my remission more. I spent most of it worrying about this!!!
Worry is only going to make it worse.
Do NOT take prednisone if you can avoid it. A short course didn't help me at all, so the doc kept adding till I said no more, and started to taper off it. Yes, the side effects are horrible. And weaning off is SO painful. And the D comes back, so it's not worth it.
Enterocort (available for far less money from alldaychemist.com) is supposed to help much more with far fewer side effects. I have it now, but haven't yet tried it. I am considering it, but I have C problems and I don't want it to be exacerbated.
There is a lot of info about gluten sensitivity, which is not seen in the regular celiac panel. Needs to be done through specialized stool tests. I gather you have not done these yet
Do you know what foods you are sensitive to? Have you done the tests? What helped you go into remission last time? According to the experts here all of us are sensitive to gluten, most to casein and soy, many to eggs and corn, many to grains, some fruits and veggies, some meats and a few, like me, to rice as well as all the above.
I am sure Tex will chime in with his wisdom, and help you more.
I am also in the middle of a relapse, or I have haven't got out of the flare yet. It just got worse.
Do NOT take prednisone if you can avoid it. A short course didn't help me at all, so the doc kept adding till I said no more, and started to taper off it. Yes, the side effects are horrible. And weaning off is SO painful. And the D comes back, so it's not worth it.
Enterocort (available for far less money from alldaychemist.com) is supposed to help much more with far fewer side effects. I have it now, but haven't yet tried it. I am considering it, but I have C problems and I don't want it to be exacerbated.
There is a lot of info about gluten sensitivity, which is not seen in the regular celiac panel. Needs to be done through specialized stool tests. I gather you have not done these yet
Do you know what foods you are sensitive to? Have you done the tests? What helped you go into remission last time? According to the experts here all of us are sensitive to gluten, most to casein and soy, many to eggs and corn, many to grains, some fruits and veggies, some meats and a few, like me, to rice as well as all the above.
I am sure Tex will chime in with his wisdom, and help you more.
I am also in the middle of a relapse, or I have haven't got out of the flare yet. It just got worse.
Thank you for the info. No, I haven't had any more testing done for Gluten sensitivity yet, but I know I should. I'm not sure what put me in remission last time. I didn't change anything at all. I had read about high dose Pepto Bismol, which I was going to try, so I took two chewables and the next day everything was perfect so I stopped taking it. Then I was good for over a month. Now before this last flare up I caught a horrible cold. I'm wondering if all of the sinus drainage into my stomach caused it. I would much rather not take the Prednisone though. I started today and the only side effect I feel so far is extreme hunger :)
Oh, about a week before I went into remission I started taking Sam-e, so I'm not sure if that helped. I'm still taking it. My GP wrote a prescription for an anti depressant, Celexa, but I didn't want to take it, so I started the Sam-e. It's supposed to help with mood as well. I've been on it for about two months now. If I stop the Prednisone, I may start the Pepto again. I was thinking though, only ten days, maybe I should stick it out. What do you think? Or maybe taper it quicker.
Hi,
I'm sorry to hear of a relapse, but of course, that's the nature of the disease, unless we do something to preempt the cycle. Unfortunately, most doctors still believe that drugs are the way to treat the disease, but when the patient stops taking the drugs, the symptoms almost always return, sooner or later, (usually sooner). We have a choice of repeating that cycle over and over, or putting a stop to it, by changing our diet. Of course, most GI docs will tell you that diet has nothing to do with MC, because those celiac blood tests cannot detect the type of gluten-sensitivity that we have, so those test results will always be negative, unless we also have fully-developed celiac disease, in addition to MC. At any rate, if you should decide to adopt the diet, it's usually best not to even tell your GI doc, because most of them will tell you that you're wasting your time trying to treat MC by means of a diet, and they'll claim that the diet is unhealthy, and all that BS.
Hundreds of members here who have been able to get their lives back by changing their diet, would strongly disagree with that misguided medical viewpoint, of course.
If your case is not particularly severe, a short course of prednisone will probably bring remission, for a couple of weeks or so, (though 20 mg is a pretty low dose, so there's a chance that it might not work). After that, as Lesley mentioned, the symptoms will almost surely return. At that point, rather than worrying, you really should devote some serious thought to how you want to spend the rest of your life. Eliminating the problem foods from your diet is never easy to do, but it can enable you to control your MC, and not have to worry about taking drugs for the rest of your life.
Whatever you decide to do, I wish you the best of luck with your treatment, because this disease can definitely make life more challenging.
Tex
I'm sorry to hear of a relapse, but of course, that's the nature of the disease, unless we do something to preempt the cycle. Unfortunately, most doctors still believe that drugs are the way to treat the disease, but when the patient stops taking the drugs, the symptoms almost always return, sooner or later, (usually sooner). We have a choice of repeating that cycle over and over, or putting a stop to it, by changing our diet. Of course, most GI docs will tell you that diet has nothing to do with MC, because those celiac blood tests cannot detect the type of gluten-sensitivity that we have, so those test results will always be negative, unless we also have fully-developed celiac disease, in addition to MC. At any rate, if you should decide to adopt the diet, it's usually best not to even tell your GI doc, because most of them will tell you that you're wasting your time trying to treat MC by means of a diet, and they'll claim that the diet is unhealthy, and all that BS.
Hundreds of members here who have been able to get their lives back by changing their diet, would strongly disagree with that misguided medical viewpoint, of course.
If your case is not particularly severe, a short course of prednisone will probably bring remission, for a couple of weeks or so, (though 20 mg is a pretty low dose, so there's a chance that it might not work). After that, as Lesley mentioned, the symptoms will almost surely return. At that point, rather than worrying, you really should devote some serious thought to how you want to spend the rest of your life. Eliminating the problem foods from your diet is never easy to do, but it can enable you to control your MC, and not have to worry about taking drugs for the rest of your life.
Whatever you decide to do, I wish you the best of luck with your treatment, because this disease can definitely make life more challenging.
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.
Prednisone is a tough drug. How many doses have you taken? I would do a lot to avoid it - but seriously, I am very far on the "no meds" end of the spectrum. (Except for Pepto, which helped me, too - I rarely take it, but it's good to know I can.)
I am kind of hard-core here. But I got to remission by a pretty straightforward path... so take me with a grain of salt, but here's what I would do.... *if* you have only had a dose or two of prednisone, I would immediately start reducing it. Since you've had luck with Pepto, resume taking Pepto if you backslide. I would also drop all gluten, all dairy, and most other grains and probably legumes. (This is what I actually did do, that's why I'm a fan
) Rice is safe for most/not all of us; potatoes, too.
At the same time, I'd get out my magnifying glass and research every ingredient in every supplement you take. If you take other prescriptions or OTC drugs, you can find out what ingredients they have online. Often it's the 'inactive ingredients' that trip us up, not the medicine or supplement we're trying to take (and usually there's another formulation available that's less likely to irritate our systems).
You may derive substantial mood benefits from GF diet - depression, anxiety, and several other mood symptoms are known to be caused or exacerbated by gluten sensitivity (unless, of course, we drop the gluten). I know that will take some time, but I wish you that good outcome.
I like this approach because it's very low risk, and high odds of at least some success.
I hope your relapse is short-lived, and wish you all the best on your road to healing and health.
I am kind of hard-core here. But I got to remission by a pretty straightforward path... so take me with a grain of salt, but here's what I would do.... *if* you have only had a dose or two of prednisone, I would immediately start reducing it. Since you've had luck with Pepto, resume taking Pepto if you backslide. I would also drop all gluten, all dairy, and most other grains and probably legumes. (This is what I actually did do, that's why I'm a fan
) Rice is safe for most/not all of us; potatoes, too. At the same time, I'd get out my magnifying glass and research every ingredient in every supplement you take. If you take other prescriptions or OTC drugs, you can find out what ingredients they have online. Often it's the 'inactive ingredients' that trip us up, not the medicine or supplement we're trying to take (and usually there's another formulation available that's less likely to irritate our systems).
You may derive substantial mood benefits from GF diet - depression, anxiety, and several other mood symptoms are known to be caused or exacerbated by gluten sensitivity (unless, of course, we drop the gluten). I know that will take some time, but I wish you that good outcome.
I like this approach because it's very low risk, and high odds of at least some success.
I hope your relapse is short-lived, and wish you all the best on your road to healing and health.
Don't stop taking the prednisone cold turkey! Follow the instructions for tapering. You can do yourself serious damage if you don't. But do NOT take it long term. The risks and side effects are not worth the benefits. Once you have MC you can't get rid of it. I am still at the very beginning of an effort to control it, and had a bad relapse yesterday. (Though I am not sure I was ever really out of it.)
I had been eating ONLY meat, potatoes and some overcooked apple for a couple of weeks, and I did something really stupid. I added more than one thing, and had a very bad flare. Now I am back to square one or further, and I don't know for sure which addition caused it (though I have a pretty good idea).
If you can help it, DON'T start anti depressants. Seriously, you become dependent and they make the MC worse.
Then, if you have side effects, the doc will give you more drugs to counteract the side effects. It's not worth it. You need to figure out what is causing this attack.
As Tex said, don't ask your doctor. He will not know, and he will tell you that only meds will control this!
I had been eating ONLY meat, potatoes and some overcooked apple for a couple of weeks, and I did something really stupid. I added more than one thing, and had a very bad flare. Now I am back to square one or further, and I don't know for sure which addition caused it (though I have a pretty good idea).
If you can help it, DON'T start anti depressants. Seriously, you become dependent and they make the MC worse.
Then, if you have side effects, the doc will give you more drugs to counteract the side effects. It's not worth it. You need to figure out what is causing this attack.
As Tex said, don't ask your doctor. He will not know, and he will tell you that only meds will control this!