Hi everyone,
I just joined because I was diagnosed with LC a few wks ago after 2 solid months of exhausting D. The GI guy told me to take Pepto 3x/day for 4 mos. Offered no diet recommendations, but based on what I've read here and on other web sites, I have eliminated: gluten, dairy, soy, alcohol, caffeine, chocolate, spicy stuff, dessert. GEE, EVERYTHING GOOD! The Pepto did the trick for a week and then stopped working completely. I thought it was because I tried this GF/dairy-free brownie or because I had green tea for a few days in a row (both things seemed relatively harmless at the time). But it's been dietary perfection for 2 days and I'm still messed up.
I left a msg for my GI guy and I know that when I tell him he's going to suggest meds of some kind. Now for my question: What should I do? Is two weeks of Pepto enough of a trial? Could green tea and a silly gluten-free/dairy free brownie really topple the apple cart for three days or does this seem like, ok, time for some drugs.
Also, I read somewhere that 80% of people with MC show no histological evidence of their MC (normal biopsy) after three years. Judging from the number of people on this board floating in and out of remission that sounds maybe not true. What do you think? I am hoping it's true and detmined to knock this out of me - I'm only 39. Can't spend the rest of my 30s on the toilet! Aaaah! Thanks for reading and any advice you have for me. xo
New to this and overwhelmed!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Annie,
Welcome to our online family. While it is true that a slip in your diet might make you sick for several days, or more, I doubt that the tea or brownie caused a relapse. Most likely what happened was that, until your gut has time to heal, the diarrhea, (D), can wax and wane, for reasons unknown. It can take time to get lasting results, but MC can indeed be controlled. As far as the Pepto treatment is concerned, let me quote from a post that I just wrote in respsonse to someone else's question:
The diet that you described will probably work, but please don't expect overnight results. It usually takes several months to achieve remission, unless you take a med such as Entocort, along with the diet.
As motivated as you seem to be, you shouldn't have any problem controlling your symptoms and getting your life back, however, it may take a little while to reach a stable state of remission, because your gut will need to heal a little, before it will behave itself. For starters, in addition to the diet, you should avoid all raw fruits and vegetables, especially lettuce, and minimize the amount of fiber in your diet, because all those things will irritate a sensitive gut, and prevent you from achieving remission. If you do that, you will not be spending the rest of your 30s on the toilet.
Again, welcome to the board, and please don't hesitate to ask any questions that may come to mind.
Tex
P S Contrary to what some of the "experts" recommend, on various web sites, (including some prestigious ones), it rarely helps to cut alcohol and/or caffeine from your diet. Also, not very many of us are intolerant of chocolate, but if you are soy intolerant, you have to be careful, because it is very difficult to find chocolate without soy as an ingredient. The safest route, of course, is to cut out everything that is suspicious, and then after you achieve remission, you can add back in some of those items, one at a time, to see if they bother you.
Welcome to our online family. While it is true that a slip in your diet might make you sick for several days, or more, I doubt that the tea or brownie caused a relapse. Most likely what happened was that, until your gut has time to heal, the diarrhea, (D), can wax and wane, for reasons unknown. It can take time to get lasting results, but MC can indeed be controlled. As far as the Pepto treatment is concerned, let me quote from a post that I just wrote in respsonse to someone else's question:
I notice that your doc is prescribing less Pepto per day, (the original program was for 8 chewable tablets per day), but your doc recommends stretching it out over 16 weeks, instead of 8, (hoping that this will work). It might, but unless you are on the diet at the same time, you will almost surely relapse when the treatment is over.Dr. Fine is a GI doc who has MC himself, and he is a leading researcher for gluten sensitive enteropathy, MC, celiac disease, etc. He is the doctor who developed the Pepto-Bismol treatment that many GI docs are just now getting around to recommending as treatment for MC, but he no longer recommends it, due to to the possibility of a toxic response to bismuth for some patients. He originally proposed following the GF diet, concurrently with the Pepto treatment, (the Pepto helped to bring remission faster than the diet alone), but now, he recommends treatment by diet alone. Most of the GI docs who recommend the Pepto treatment, forget to mention the GF diet part, because they don't believe that MC can be controlled by diet changes. Consequently, when their patients complete the 8-week course of Peoto-Bismol, most of them will relapse a few days later, the GI doc will be mystified, and he or she will then prescribe some other treatment, (usually with similar results).
The diet that you described will probably work, but please don't expect overnight results. It usually takes several months to achieve remission, unless you take a med such as Entocort, along with the diet.
That research report has been around for a long time, and it's a perfect example of the old saying that you can prove just about anything you want in a research project, if you go about it the right way. As you say, if there's any truth to it, why didn't it work for all of us? Many of us have been dealing with this disease for 8 or 10 years now, (and some much longer), and while we are in remission, if we should stop our treatment, (whether it's diet or meds), we would promptly suffer a relapse within a matter of days.Annie wrote:Also, I read somewhere that 80% of people with MC show no histological evidence of their MC (normal biopsy) after three years. Judging from the number of people on this board floating in and out of remission that sounds maybe not true. What do you think?
As motivated as you seem to be, you shouldn't have any problem controlling your symptoms and getting your life back, however, it may take a little while to reach a stable state of remission, because your gut will need to heal a little, before it will behave itself. For starters, in addition to the diet, you should avoid all raw fruits and vegetables, especially lettuce, and minimize the amount of fiber in your diet, because all those things will irritate a sensitive gut, and prevent you from achieving remission. If you do that, you will not be spending the rest of your 30s on the toilet.
Again, welcome to the board, and please don't hesitate to ask any questions that may come to mind.
Tex
P S Contrary to what some of the "experts" recommend, on various web sites, (including some prestigious ones), it rarely helps to cut alcohol and/or caffeine from your diet. Also, not very many of us are intolerant of chocolate, but if you are soy intolerant, you have to be careful, because it is very difficult to find chocolate without soy as an ingredient. The safest route, of course, is to cut out everything that is suspicious, and then after you achieve remission, you can add back in some of those items, one at a time, to see if they bother you.
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.
Intolerances
Tex, thanks for the speedy and very helpful reply! I've read Dr. Fine's web site and I'm planning to get tested for food intolerances. I could handle the no gluten, but an elimination diet for several months seems potentially unhealthy, not to mention practically impossible. I also find it rather bizarre that I have never had an allergy or food sensitivity of any kind, 39 years of eating whatever I want and feeling great, and then BAM! Suddenly food intolerances aplenty? That doesn't make sense to me. The gluten part makes sense, what with the gene and all that, but to suddenly have problems with dairy, soy, etc? Seems illogical. I admit that part of me wonders whether Dr. Fine is laughing all the way to the bank. Not that I trust my doctor either. (Although my doctor did say that we ultimately don't know a hell of a lot about LC, so at least he's not pretending to know much.)
Here's a personal question for you - how often do you relapse, and is it always because you ate something you shouldn't? While I'm at it:
How long does a relapse last, typically?
Thanks for the lettuce/veggies tip. Speaking of which, one more thing. Actually, two:
I was told to take Metamucil. Bad idea?
Can you eat things that were "manufactured in facility that processes wheat"?
Thank you so much for all your knowledge. I have been feeling LOST!
Here's a personal question for you - how often do you relapse, and is it always because you ate something you shouldn't? While I'm at it:
How long does a relapse last, typically?
Thanks for the lettuce/veggies tip. Speaking of which, one more thing. Actually, two:
I was told to take Metamucil. Bad idea?
Can you eat things that were "manufactured in facility that processes wheat"?
Thank you so much for all your knowledge. I have been feeling LOST!
Hi Annie,
Bizarre or not, that is exactly what has happened to most of us here. Once some "event" triggers certain genes, our lives are forever changed. You are assuming that you are intolerant to all the the food items that you listed, but that isn't necessarily true. A few of us are only sensitive to gluten, but most of us are sensitive to gluten and casein, (dairy). Maybe half of us are sensitive to soy, and only a few of us are sensitive to various other items, (mostly those with double DQ1 genes). I'll grant you, following the diet is not easy, and it takes some getting used to. Eventually it becomes second nature. If you don't feel that you can bring yourself to eliminate most of the possibilities initially, then a good bet is to try eliminating all gluten and dairy products from your diet for a few weeks, to see if you notice any improvement.
Believe it or not, this is a healthier diet than the general population eats. It is a statistical fact that celiacs, (who avoid gluten for the rest of their lives), live longer than the general population. Another thing to consider is the fact that the countries of the world where inhabitants consume the most dairy products, also have the highest rates of osteoporosis, and conversely, the countries where people consume the least amount of dairy products, (or none at all), have the lowest rates of osteoporosis.
I don't know if Dr. Fine is laughing all the way to the bank, or not, but his lab is the only game in town, if you want accurate food intolerance tests. Absolutely no other tests available at this time, are reliable.
Personally, I haven't had but maybe two or three "relapse episodes" in the almost five years that I've been in remission, and they only lasted for a day or two, and they were due to eating food that someone else cooked, and they insisted that it was "safe" for me. This does not include an oat intolerance test that I did about a year and a half ago to prove that, (contrary to what the experts claim), oats are not safe for many of us, even if they are certified to be pure. In that test, I ate oats twice a week for six weeks. At that point chronic D began, so I stopped eating oats, but the D lasted for about six more weeks. To verify the test results, after a week of remission, I ate oats one more time, and in a few hours the D started, and lasted for about a day. A week later, I did the same thing, with the same results, which I believe conclusively proves that I am intolerant of oats. Anyway, that gives you an idea of how long a "relapse" lasts. IOW, it depends on how long you eat the offending food, (IOW, how much damage it does to your intestines). If you want more details, you should be able to do a search of this board, for the threads where I discussed that test, by clicking on the "Search" link above, (not Google).
That said, many members find that, (especially in the early stages, while they are still healing), relapses can sometimes seem to come out of the blue, for no known reason. Often, though with enough detective work, the reason can be tracked down.
Metamucil is not only a fiber supplement, (which is contraindicated for MC), but it is also listed as a laxative. Obviously, your doc wasn't kidding when he said, "we ultimately don't know a hell of a lot about LC". The "we" he was referring to, though, is primarily Gastrointestinal Specialists. GI docs, (as a group), seem to be the slowest of all the specialists, to update their knowledge, and take advantage of new technology. A fair amount of valid information about MC is available, but it is often very difficult to locate. You have to wade through reams and reams of misinformation, in order to glean a few tidbits of information that are actually valid. Even most websites of the most prestigious medical facilities in the world, are filled with misinformation about MC. Most "medical experts" consider MC to be similar to what they define as "IBS". It is not. The main purpose of this website is to consolidate as much valid information as possible, while weeding out the stuff that does not work for patients with MC. On this site, we learn what works and what doesn't work, by sharing experiences. No one knows more about MC, than the members of this board, who have learned to live with it, and who continue to learn new information about it, on a daily basis.
Whether or not you eat products with a "manufactured in a facility that processes wheat" label, depends on whether or not you trust the manufacturer, and for some of us, it depends on how sensitive we are. It's strictly a personal decisison. Personally, I don't, but that doesn't mean that I might not make exceptions in the future. Many manufacturers simply put that label on their products in order to cover their butts, in case of a liability issue.
You're most welcome. If you keep reading on this site, and asking questions, you will soon find the path that you want to follow, to get your life back.
Tex
I realize that it seems unacceptable to most people initially, to not eat a "balanced" diet for several months, but regardless of what you are eating now, if you are gluten sensitive, you almost certainly have intestinal damage that causes a serious malabsorption problem, so a balanced diet will not supply the nutrition that you need, for long-term good health. IOW, many of your nutrients are passing through your system, unabsorbed, because of the damage to the surface of your small intestine, this is particularly true for most vitamins, which are fat-soluble, and fat absorption can be very limited, when MC is active. (Sometimes you can actually see the greasy film in the toilet).Annie wrote:I could handle the no gluten, but an elimination diet for several months seems potentially unhealthy, not to mention practically impossible.
Annie wrote:I also find it rather bizarre that I have never had an allergy or food sensitivity of any kind, 39 years of eating whatever I want and feeling great, and then BAM! Suddenly food intolerances aplenty? That doesn't make sense to me.
Bizarre or not, that is exactly what has happened to most of us here. Once some "event" triggers certain genes, our lives are forever changed. You are assuming that you are intolerant to all the the food items that you listed, but that isn't necessarily true. A few of us are only sensitive to gluten, but most of us are sensitive to gluten and casein, (dairy). Maybe half of us are sensitive to soy, and only a few of us are sensitive to various other items, (mostly those with double DQ1 genes). I'll grant you, following the diet is not easy, and it takes some getting used to. Eventually it becomes second nature. If you don't feel that you can bring yourself to eliminate most of the possibilities initially, then a good bet is to try eliminating all gluten and dairy products from your diet for a few weeks, to see if you notice any improvement.
Believe it or not, this is a healthier diet than the general population eats. It is a statistical fact that celiacs, (who avoid gluten for the rest of their lives), live longer than the general population. Another thing to consider is the fact that the countries of the world where inhabitants consume the most dairy products, also have the highest rates of osteoporosis, and conversely, the countries where people consume the least amount of dairy products, (or none at all), have the lowest rates of osteoporosis.
I don't know if Dr. Fine is laughing all the way to the bank, or not, but his lab is the only game in town, if you want accurate food intolerance tests. Absolutely no other tests available at this time, are reliable.
Personally, I haven't had but maybe two or three "relapse episodes" in the almost five years that I've been in remission, and they only lasted for a day or two, and they were due to eating food that someone else cooked, and they insisted that it was "safe" for me. This does not include an oat intolerance test that I did about a year and a half ago to prove that, (contrary to what the experts claim), oats are not safe for many of us, even if they are certified to be pure. In that test, I ate oats twice a week for six weeks. At that point chronic D began, so I stopped eating oats, but the D lasted for about six more weeks. To verify the test results, after a week of remission, I ate oats one more time, and in a few hours the D started, and lasted for about a day. A week later, I did the same thing, with the same results, which I believe conclusively proves that I am intolerant of oats. Anyway, that gives you an idea of how long a "relapse" lasts. IOW, it depends on how long you eat the offending food, (IOW, how much damage it does to your intestines). If you want more details, you should be able to do a search of this board, for the threads where I discussed that test, by clicking on the "Search" link above, (not Google).
That said, many members find that, (especially in the early stages, while they are still healing), relapses can sometimes seem to come out of the blue, for no known reason. Often, though with enough detective work, the reason can be tracked down.
Metamucil is not only a fiber supplement, (which is contraindicated for MC), but it is also listed as a laxative. Obviously, your doc wasn't kidding when he said, "we ultimately don't know a hell of a lot about LC". The "we" he was referring to, though, is primarily Gastrointestinal Specialists. GI docs, (as a group), seem to be the slowest of all the specialists, to update their knowledge, and take advantage of new technology. A fair amount of valid information about MC is available, but it is often very difficult to locate. You have to wade through reams and reams of misinformation, in order to glean a few tidbits of information that are actually valid. Even most websites of the most prestigious medical facilities in the world, are filled with misinformation about MC. Most "medical experts" consider MC to be similar to what they define as "IBS". It is not. The main purpose of this website is to consolidate as much valid information as possible, while weeding out the stuff that does not work for patients with MC. On this site, we learn what works and what doesn't work, by sharing experiences. No one knows more about MC, than the members of this board, who have learned to live with it, and who continue to learn new information about it, on a daily basis.
Whether or not you eat products with a "manufactured in a facility that processes wheat" label, depends on whether or not you trust the manufacturer, and for some of us, it depends on how sensitive we are. It's strictly a personal decisison. Personally, I don't, but that doesn't mean that I might not make exceptions in the future. Many manufacturers simply put that label on their products in order to cover their butts, in case of a liability issue.
You're most welcome. If you keep reading on this site, and asking questions, you will soon find the path that you want to follow, to get your life back.
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.
Annie;
Welcome to our "family"! I'm so sorry to hear that you needed to look for us, but happy you were able to find us!
Let me share my personal story, just so you have one to compare with. Others will probably do the same as you get to know more people here.
My MC (LC type) was triggered by one of several incidences back in 2001. First, I was working for a short time in Central America and developed symptoms of some sort of parasite. I was not tested, but was given an antibiotic by one of the docs on our team. When that didn't work, I was given a different antibiotic, and then a third one. When I did not have relief, I was given worm medicine. I came home 3 weeks after the beginning of the D and immediately got an appointment with my doc. I was diagnosed with c. diff, which is basically an imbalance of the good vs. bad bacteria in the gut. He prescribed a medication specific for c. diff treatment and my follow-up test showed me clear of that problem, but symptoms remained.
At that point I was referred to a GI doc. Today I believe that the possible parasite, OR the antibiotics OR the c. diff triggered my MC. Who knows which, and, for all practical purposes, who cares!
Anyway, 6 months after the D began, I had a colonoscopy with biopsy and my GI called me on the phone to say he had "good news and bad news" - the good news was that he had a confirmed diagnosis for me and the bad news is there is no cure! He told me I would live with this for the rest of my life, with spontaneous remissions and exacerbations, and that I would "learn to live with it"!
Well, I decided I would NOT "learn to live with it", so I hit the internet. I found the predecessor to this site and began learning all I could about this disease. Approx 8 months after my diagnosis, I decided to go gluten free. I did not give up anything else. I just struggled through learning this life style. I made many mistakes. I went through good days as well as bad days as I learned to live without gluten (which is found in more foods than I'd ever imagined!)
I found my first "normal" stool about 3 months after beginning the diet, and 6 months after beginning the diet I found myself having nothing but "normal" stools!
I had my last colonoscopy approx a yr ago, and my GI said there were no signs of inflammation and the biopsy was perfectly normal. Today, if I eat at a restaurant or something someone else prepared, I will occasionally have a flare-up of one or two D episodes. I firmly believe that I have been careful enough that I have healed to the point where I do eat occasional "contaminated" foods and I don't react to them.
Up until 3 weeks ago, I would have told you that I could trace EVERY flare-up to where I ate, even if I'm not aware of what specific food was the culprit. Also, up until 3 weeks ago, I would have told you that EVERY flare-up I had lasted less than 24 hours. I felt totally in control and that I had learned to live with this! BUT, one morning I woke up feeling same as usual, and in the middle of my shower I had to get out and I had a huge explosive totally liquid stool. I continued with several D stools each day, nausea, pain and occasional vomiting for one week. I visited my GI, who didn't know why I had the symptoms I did. My visit to him was exactly one week after the first D episode, and later the day that I saw him all my symptoms went away as quickly as they began. I had not eaten away from my own totally GF kitchen in over a week prior to symptoms. Today I still am not sure if this was my MC, if I got some sort of "bug" or what it was. I only know for certain it was not diet related.
So, that's the history I've had. I congratulate you on your rapid diagnosis, as well as on your determination with the dietary changes. Tex has given you wonderful factual info, and I've shared with you my personal history. Now, I'd like to encourage you to keep up the good work, and to ask us any and all questions that come to your mind.
Great to have you here!
G'ma Mary
Welcome to our "family"! I'm so sorry to hear that you needed to look for us, but happy you were able to find us!
Let me share my personal story, just so you have one to compare with. Others will probably do the same as you get to know more people here.
My MC (LC type) was triggered by one of several incidences back in 2001. First, I was working for a short time in Central America and developed symptoms of some sort of parasite. I was not tested, but was given an antibiotic by one of the docs on our team. When that didn't work, I was given a different antibiotic, and then a third one. When I did not have relief, I was given worm medicine. I came home 3 weeks after the beginning of the D and immediately got an appointment with my doc. I was diagnosed with c. diff, which is basically an imbalance of the good vs. bad bacteria in the gut. He prescribed a medication specific for c. diff treatment and my follow-up test showed me clear of that problem, but symptoms remained.
At that point I was referred to a GI doc. Today I believe that the possible parasite, OR the antibiotics OR the c. diff triggered my MC. Who knows which, and, for all practical purposes, who cares!Anyway, 6 months after the D began, I had a colonoscopy with biopsy and my GI called me on the phone to say he had "good news and bad news" - the good news was that he had a confirmed diagnosis for me and the bad news is there is no cure! He told me I would live with this for the rest of my life, with spontaneous remissions and exacerbations, and that I would "learn to live with it"!
Well, I decided I would NOT "learn to live with it", so I hit the internet. I found the predecessor to this site and began learning all I could about this disease. Approx 8 months after my diagnosis, I decided to go gluten free. I did not give up anything else. I just struggled through learning this life style. I made many mistakes. I went through good days as well as bad days as I learned to live without gluten (which is found in more foods than I'd ever imagined!)
I found my first "normal" stool about 3 months after beginning the diet, and 6 months after beginning the diet I found myself having nothing but "normal" stools!
I had my last colonoscopy approx a yr ago, and my GI said there were no signs of inflammation and the biopsy was perfectly normal. Today, if I eat at a restaurant or something someone else prepared, I will occasionally have a flare-up of one or two D episodes. I firmly believe that I have been careful enough that I have healed to the point where I do eat occasional "contaminated" foods and I don't react to them.
Up until 3 weeks ago, I would have told you that I could trace EVERY flare-up to where I ate, even if I'm not aware of what specific food was the culprit. Also, up until 3 weeks ago, I would have told you that EVERY flare-up I had lasted less than 24 hours. I felt totally in control and that I had learned to live with this! BUT, one morning I woke up feeling same as usual, and in the middle of my shower I had to get out and I had a huge explosive totally liquid stool. I continued with several D stools each day, nausea, pain and occasional vomiting for one week. I visited my GI, who didn't know why I had the symptoms I did. My visit to him was exactly one week after the first D episode, and later the day that I saw him all my symptoms went away as quickly as they began. I had not eaten away from my own totally GF kitchen in over a week prior to symptoms. Today I still am not sure if this was my MC, if I got some sort of "bug" or what it was. I only know for certain it was not diet related.
So, that's the history I've had. I congratulate you on your rapid diagnosis, as well as on your determination with the dietary changes. Tex has given you wonderful factual info, and I've shared with you my personal history. Now, I'd like to encourage you to keep up the good work, and to ask us any and all questions that come to your mind.
Great to have you here!
G'ma Mary
Those who are not part of the solution, are part of the problem.
Thanks!
Hey Tex and G'Ma Mary,
Thanks so much for the helpful replies. You guys are wonderful! I am now feeling pretty good about nipping this in the bud through diet alone. G'Ma Mary, I'll bet that last episode was a bug. Even people without MC have D every now and then, right?
I spent all of yesterday in the emergency room on IV fluids and morphine. Now that I think about it I have probably been walking around dehydrated for 2 months. One really bad night knocked over the house of cards and put me in a terrible place.
Even though my Dr. doesn't seem to know what to do about me, I'm glad I got a FAST diagnosis. Good thing I'm a whiney hypochondriac and was in his office demanding answers after only one week of D. :)
Thanks so much for the helpful replies. You guys are wonderful! I am now feeling pretty good about nipping this in the bud through diet alone. G'Ma Mary, I'll bet that last episode was a bug. Even people without MC have D every now and then, right?
I spent all of yesterday in the emergency room on IV fluids and morphine. Now that I think about it I have probably been walking around dehydrated for 2 months. One really bad night knocked over the house of cards and put me in a terrible place.
Even though my Dr. doesn't seem to know what to do about me, I'm glad I got a FAST diagnosis. Good thing I'm a whiney hypochondriac and was in his office demanding answers after only one week of D. :)
I'm sorry to hear about the trip to the ER, but I'll bet you feel a lot better now. Dehydration can sneak up on you before you realize it. So can things such as deficiencies of potassium and vitamin B-12. I suspect that most of us have been dehydrated and/or short of electrolytes or vitamins at least once or twice, during our recoveries.
Tex
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.
Annie,
What an ordeal you've had! I'm glad your on the road to recovery. Over the course of this disease, I've learned that when I start getting a mild headache, it means that I'm getting dehydrated. I think it's easy to get dehydrated with MC.
Gloria
What an ordeal you've had! I'm glad your on the road to recovery. Over the course of this disease, I've learned that when I start getting a mild headache, it means that I'm getting dehydrated. I think it's easy to get dehydrated with MC.
Gloria
You never know what you can do until you have to do it.