Aquilegia,
My doctor was very clear in explaining to me that LC is an incurable disease whose cause is not known. He prescribed Entorcort for 3 months, and warned me that when I went off the Entocort, the diarrhea would come back, probably within a month.
He was right; the D was back in three weeks. He prescribed more Entocort. When I asked for other options, because Entocort is so expensive, he just said, "You have an incurable disease. This is the medicine that best treats the symptoms." At no time did he lead me to believe that medicine would cure LC. He did mention that one of his patients got some relief from her D by eating coconut macaroons.
That sent me on an internet search for a coconut-diarrhea connection, and I eventually found the Potty People. At first I really thought this gluten thing was all a bunch of hooey. How could something I've been eating all my life suddenly make me sick?
But I finally decided that I was being unreasonable. If all these people got relief from not eating gluten, I could at least try it for 6 months to a year, and see if it helped. Anything was better than spending so much time on the toilet, and never feeling like I could trust my body to behave itself. Entocort worked really great, but it is expensive, and I didn't want to spend the rest of my life paying that kind of money and being on a corticosteroid. I am, however, greatly appreciative for the 3 months of relief that it gave me. My current gluten-, dairy-, and soy-free existence, supplemented by a couple of tablespoons of dried coconut every day, isn't as consistently dependable as Entocort to produce Normans, but it's way cheaper, and not a drug.
You have to decide yourself what you want to do. If you want to do the medicine route and eat whatever you want, that's certainly an option. You might check with your doctor to see if he knows what kind of experience people have with long term use--whether it continues to keep the symptoms at bay, or whether at some point the medicine is not longer effective. That was my big fear (other than the cost!)--that at some point, whatever LC was doing to my insides would overwhelm the ability of the medicine to control it, and I would be in worse shape than when I started.
Best of luck to you. I hope you can find a solution that works for you.
Sincerely,
Martha
what causes lymphocytic colitis?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Aquilegia,
Let's say you're right about that. What does that imply? I'm not meaning to argue, I've just lost track of where you're headed with this line of thinking. (My apologies.)
Gliadin is one of the components into which gluten is broken down, yes? And doesn't the presence of anti-gliadin antibodies in the colon suggest that even if the protein is broken down, some immune response is occurring?
To Zizzle's point, it does seem as though, if an entire recognizable floret of broccoli can get through a distressed digestive tract, more than likely that same unhappy system might not quite get the job done breaking down proteins as it should.
Sara
Let's say you're right about that. What does that imply? I'm not meaning to argue, I've just lost track of where you're headed with this line of thinking. (My apologies.)
Gliadin is one of the components into which gluten is broken down, yes? And doesn't the presence of anti-gliadin antibodies in the colon suggest that even if the protein is broken down, some immune response is occurring?
To Zizzle's point, it does seem as though, if an entire recognizable floret of broccoli can get through a distressed digestive tract, more than likely that same unhappy system might not quite get the job done breaking down proteins as it should.
Sara
I'm guessing they now have additional food intolerances, not just to gluten. Their celiac inflammation made them susceptible to other food intolerances (leaky gut again). In most celiac circles, there are at least a handful of people also avoiding dairy, soy and other common allergens.
Not to mention the fact that even the most diligent celiacs probably get cross-contamination from time to time.
Not to mention the fact that even the most diligent celiacs probably get cross-contamination from time to time.
When I read that, I thought that some of those celiac patients already had MC. Going GF wasn't enough to resolve the symptoms.
For celiac patients particularly, being diagnosed early and going GF might have stopped them from developing MC - maybe. As I understand it, the greater length of time to diagnosis, the more 'collateral damage' can occur. This can be to other systems in the body. And many people begin reacting to other foods as well, most often dairy. Some people, when they get the reactions stopped (sometimes with medication and diet, sometimes with diet), can add back in foods that previously induced a reaction. But not everyone, and not necessarily all the trigger foods.
I don't think I have celiac, but haven't had a small intestine biopsy. I'll be interested to see what my genetic test shows.
Sara
For celiac patients particularly, being diagnosed early and going GF might have stopped them from developing MC - maybe. As I understand it, the greater length of time to diagnosis, the more 'collateral damage' can occur. This can be to other systems in the body. And many people begin reacting to other foods as well, most often dairy. Some people, when they get the reactions stopped (sometimes with medication and diet, sometimes with diet), can add back in foods that previously induced a reaction. But not everyone, and not necessarily all the trigger foods.
I don't think I have celiac, but haven't had a small intestine biopsy. I'll be interested to see what my genetic test shows.
Sara
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
most information about what causes IBD's say similar things
To date the thought was that people that got IBD's had an overactive immune system.
some recent research may prove it is the opposite, which tex has believed for quite a while eg here is a a quote from a discussion in the news release section
Psorioas and MC are very different in how they present one is skin, one is digestion, but comparing a psorioas patient and MC patient there are lots of similarities, certain situations (ie stress) will cause symptoms to flare, certain foods and/or alcohol will cause symptoms to flare, if they are not well with the flu or other illness or virus, symptoms will flare, outside environment or toxins may cause symptoms to flare.
my understanding is the MC and most IBD's are a inflammation reaction that is caused because our Immune and Adrenals react.Causes of IBD
Research isn't conclusive on the causes inflammatory bowel disease, but experts believe that many factors might be involved, including the environment, diet, and genetics.
Current evidence suggests that in people with IBD, a genetic defect affects how the immune system works and how inflammation is triggered in response to an offending agent, like bacteria, a virus, or a protein in food
To date the thought was that people that got IBD's had an overactive immune system.
some recent research may prove it is the opposite, which tex has believed for quite a while eg here is a a quote from a discussion in the news release section
in the discussions about auto immune conditions, most of the thinking is that the combo of factors like; genetics, prolonged or extreme stress, certain medications (ie HRT or other meds), outside influences (metal toxicity) mix these together and the person may or may not get an auto immune condition, what condition depends on various aspects, generally it will be what ever organ or system is weaker than the others.namely that MC is not a result of an overactive immune system - it's the result of underactive, (or a deficient supply of), regulatory T-cells
Psorioas and MC are very different in how they present one is skin, one is digestion, but comparing a psorioas patient and MC patient there are lots of similarities, certain situations (ie stress) will cause symptoms to flare, certain foods and/or alcohol will cause symptoms to flare, if they are not well with the flu or other illness or virus, symptoms will flare, outside environment or toxins may cause symptoms to flare.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi aquilegia,
I'm sorry that you're confused, but you have misinterpreted my position on gluten and how it relates to microscopic colitis. It is true, (as far as I am aware), that there is no proof that gluten initially triggers MC, and neither I, nor anyone else here, makes such a claim. However, there is plenty of epidemiological evidence that most people who have MC, are sensitive to gluten. Apparently, when the genes that predispose to microscopic colitis are triggered, initiating the disease, the genes that predispose to gluten-sensitivity are also triggered in a majority of individuals. In fact, according to scientific research, approximately 69% of people with MC are sensitive to gluten. You can verify that number at the following link. Click on link number 29 in the list:
http://www.enterolab.com/Lecture/Lecturenew/frame.htm
Whether that information is 100% accurate, I can't say, but I do know that well over 90% of the members of this board are sensitive to gluten, (as evidenced by our stool test results, which you can review here, if you require proof of what I claim):
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
I apologize if my/our attempts to save new members from a long, drawn-out period of needless suffering, offends you, and I'm sorry if your doctors are ignorant of the fact that diet holds the key to the prevention and control of the inflammation that causes MC, but I don't create the parameters that define this disease, I/we just try to make the truth available, so that everyone can decide for herself, or himself, how best to approach their own individual treatment program.
Sure, you might be an exception to the general rule. Not everyone with MC is sensitive to gluten. If you believe that the advice you receive from your doctor is accurate, and in your best interest, then by all means, go with it. If you get tired of having relapses, and you decide that you would be better off actually controlling the inflammation that is causing your disease, then please give some thought to what the vast majority of the other members here have found to be true. For most people with MC, the symptoms are best controlled by carefully controlling the types of food that we eat, and the gut cannot heal, as long as we continue to eat foods that inflame it.
If you want out-of-date, compromised, and incomplete advice - see your GI specialist, and review the descriptions of MC on the web sites of the major medical institutions. If you want up-to-date information on how to actually control your symptoms, (based on the actual experiences of hundreds of members) - then instead of trying to argue with us, read here, and learn. And in case you think I am being less than gracious, I was more than a little "put off" by your argumentative responses to Zizzle, (and others), who were simply trying to help you. Your arguments against what Zizzle posted, clearly show that you know virtually nothing about how the digestive system works when MC is present.
Quite frankly, you give the impression that you are here just so you can argue, and promote your agenda against having to do anything more difficult than simply taking a pill to control your MC. (Good luck with that, by the way). The primary goal of this board is to help as many people as possible, to control their MC symptoms as quickly, (and as safely), as possible, and we don't hold a gun to anyone's head, and demand that they try one treatment over another.
This disease is not a "walk in the park" - it's a complex, little-understood disease, that can present as anything from a "minor inconvenience", to a totally debilitating chronic syndrome. Therefore, it never has been, and probably never will be, easy to treat. We're here to suggest proven treatment methods that work for us - we're not here to argue about whether or not any particular treatment might work for you - that's for you to decide. OK?
Tex
I'm sorry that you're confused, but you have misinterpreted my position on gluten and how it relates to microscopic colitis. It is true, (as far as I am aware), that there is no proof that gluten initially triggers MC, and neither I, nor anyone else here, makes such a claim. However, there is plenty of epidemiological evidence that most people who have MC, are sensitive to gluten. Apparently, when the genes that predispose to microscopic colitis are triggered, initiating the disease, the genes that predispose to gluten-sensitivity are also triggered in a majority of individuals. In fact, according to scientific research, approximately 69% of people with MC are sensitive to gluten. You can verify that number at the following link. Click on link number 29 in the list:
http://www.enterolab.com/Lecture/Lecturenew/frame.htm
Whether that information is 100% accurate, I can't say, but I do know that well over 90% of the members of this board are sensitive to gluten, (as evidenced by our stool test results, which you can review here, if you require proof of what I claim):
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
I apologize if my/our attempts to save new members from a long, drawn-out period of needless suffering, offends you, and I'm sorry if your doctors are ignorant of the fact that diet holds the key to the prevention and control of the inflammation that causes MC, but I don't create the parameters that define this disease, I/we just try to make the truth available, so that everyone can decide for herself, or himself, how best to approach their own individual treatment program.
Sure, you might be an exception to the general rule. Not everyone with MC is sensitive to gluten. If you believe that the advice you receive from your doctor is accurate, and in your best interest, then by all means, go with it. If you get tired of having relapses, and you decide that you would be better off actually controlling the inflammation that is causing your disease, then please give some thought to what the vast majority of the other members here have found to be true. For most people with MC, the symptoms are best controlled by carefully controlling the types of food that we eat, and the gut cannot heal, as long as we continue to eat foods that inflame it.
If you want out-of-date, compromised, and incomplete advice - see your GI specialist, and review the descriptions of MC on the web sites of the major medical institutions. If you want up-to-date information on how to actually control your symptoms, (based on the actual experiences of hundreds of members) - then instead of trying to argue with us, read here, and learn. And in case you think I am being less than gracious, I was more than a little "put off" by your argumentative responses to Zizzle, (and others), who were simply trying to help you. Your arguments against what Zizzle posted, clearly show that you know virtually nothing about how the digestive system works when MC is present.
Quite frankly, you give the impression that you are here just so you can argue, and promote your agenda against having to do anything more difficult than simply taking a pill to control your MC. (Good luck with that, by the way). The primary goal of this board is to help as many people as possible, to control their MC symptoms as quickly, (and as safely), as possible, and we don't hold a gun to anyone's head, and demand that they try one treatment over another.
This disease is not a "walk in the park" - it's a complex, little-understood disease, that can present as anything from a "minor inconvenience", to a totally debilitating chronic syndrome. Therefore, it never has been, and probably never will be, easy to treat. We're here to suggest proven treatment methods that work for us - we're not here to argue about whether or not any particular treatment might work for you - that's for you to decide. OK?
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.
It seems that I am not allowed to question anything or I will get a slap on the wrist. I am just trying to make sense of all of this information and understand the science behind it. I was just diagnosed with this illness and I was hoping to understand it and get some answers to my questions.
I did follow a gluten-free diet for almost a year so I am not exactly against the idea. It just did not help me.
I did follow a gluten-free diet for almost a year so I am not exactly against the idea. It just did not help me.
Well aquilegia, you're pretending that none of us know what we're talking about, and we number in the hundreds, altogether. You're not questioning - you're arguing. You're disputing a treatment method that has brought remission to countless people, around the world, and for some odd reason, you feel that you know better than us. That strikes me as an agenda, it's way beyond questioning.
The reason why a GF diet for a year didn't help you is probably because you have additional sensitivities. Unless you eliminate them also, (and I mean 100%), then the diet is not likely to provide any significant benefits. You have to eliminate all your food sensitivities for the diet to work. Otherwise, you're stuck with the meds that the doctors prescribe. Most doctors will never be able to successfully use diet to treat MC, because each of has different sensitivities, and different responses to the diet, so we each have to work out our own personalized, detailed, treatment program. Doctors simply don't have the time, patience, nor the resources to successfully use that approach - it's far too complicated to be properly addressed in the time that they have available to spend with each patient. So, as a result, many of them will probably continue to pretend that diet has nothing to do with MC.
Please don't misunderstand, nothing would make us happier than to be able to help you to reach a stable and lasting condition of remission, but we can't do that by arguing about the very tool that most of us have found to be the key to getting our life back.
Tex
The reason why a GF diet for a year didn't help you is probably because you have additional sensitivities. Unless you eliminate them also, (and I mean 100%), then the diet is not likely to provide any significant benefits. You have to eliminate all your food sensitivities for the diet to work. Otherwise, you're stuck with the meds that the doctors prescribe. Most doctors will never be able to successfully use diet to treat MC, because each of has different sensitivities, and different responses to the diet, so we each have to work out our own personalized, detailed, treatment program. Doctors simply don't have the time, patience, nor the resources to successfully use that approach - it's far too complicated to be properly addressed in the time that they have available to spend with each patient. So, as a result, many of them will probably continue to pretend that diet has nothing to do with MC.
Please don't misunderstand, nothing would make us happier than to be able to help you to reach a stable and lasting condition of remission, but we can't do that by arguing about the very tool that most of us have found to be the key to getting our 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.
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TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
What convinced me the most to listen to what I was being told here was reading about the results of surgical intervention for retractable MC. When the colon is bypassed via an ileostomy in order to rest the colon, once the ileostomy was reversed, the MC returned. Well, DUH, those patients were never advised to change their diets! Of course the MC returned! If you continue to eat the foods that inflame your intestine, you can bank on D.
BTW, I was gluten intolerant before the Big D. We had a favorite recipe made with Bulgar wheat. We loved it! But I finally had to stop making it even though my husband would beg me for it. It just wasn't worth how sick it made me. I also had to give up breakfast cereal for a year or so before MC hit. Again, the gas and bloating just wasn't worth it.
BTW, I was gluten intolerant before the Big D. We had a favorite recipe made with Bulgar wheat. We loved it! But I finally had to stop making it even though my husband would beg me for it. It just wasn't worth how sick it made me. I also had to give up breakfast cereal for a year or so before MC hit. Again, the gas and bloating just wasn't worth it.
Arlene
Progress, not perfection.
Progress, not perfection.
Aquilegia,
Be proud of yourself for questioning everything. And i mean everything. That is how many have found are own way. I came to the old site after a year of wondering in the wilderness without a compass and actually presented some members with ideas that helped . While your questioning attitude may upset some here that appear to have all the answers others have given you ideas that might lead you in a new direction.
My blessings to your new path. No matter what it is.
Please uptdate us. Many here ,but not all, are open to new ideas.
Matthew
Be proud of yourself for questioning everything. And i mean everything. That is how many have found are own way. I came to the old site after a year of wondering in the wilderness without a compass and actually presented some members with ideas that helped . While your questioning attitude may upset some here that appear to have all the answers others have given you ideas that might lead you in a new direction.
My blessings to your new path. No matter what it is.
Please uptdate us. Many here ,but not all, are open to new ideas.
Matthew
Matthew, I'm newish here - I'm interested to know what is working for you. If you prefer, please feel free to start a new topic or PM me. Currently I'm trying GF/DF/SF diet (also limiting most other grains and legumes), no Rx meds, about 1 Pepto/day. You've been at this longer - would love to know what you think.
I do like questions ;)
Sara
I do like questions ;)
Sara
aquilega, welcome to this group and sorry you have MC. You are very right to try and find out what works and what not and trying to understand it. I did the same before I started the diet. I also read and studied the site of Dr Fine very carefully before I ordered the food intolerances test. To me he seems a serious researchers, a qualified GI MD who knows what he is talking about. For me he is the only researchers that did some serious research in the field of MC and food intolerances.
Prove that gluten cause or a gluten free diet can cure MC is not there. But there are suggestions that lead in that direction, if you google on gluten free and MC (or CC or LC) there are a view studies that suggest that there might be a relation between gluten and MC. Also (and this is proven) about 4% of people with celiac have MC, that number is a 100 to 1000 higher than for peopit in my case to, is take a closer look in le that don't have celiac.
What I did all my other bowel/health complains and I could recognize a lot it in the classic celiac symptoms. For example the 6 month pregnant belly (bloating). I can assure my belly is much flatter, since I eat gluten free.
Diet is considered is one of the options here to treat MC (for a lot of us the best option and a lot of us are really convinced, but I don't think anyone here would push somebody else to it to, if somebody is not into it for whatever reason. Not believing it, to much effort or whatever. We are all free here to choose whatever we want, thanks god)
In general we are not anti medication here, a lot of use medication in combination with diet. I am one of them.
Also we are not anti doctor or anti GI (also in general), a lot of us visit the GI regular, it's not or/or, its more and/and.
Problem is that I have read a lot of stories here of GI's not treating MC very well. Wrong medication, tempering it down to early, considering it a minor problem. And for a lot of us (me including) it's a live changing disease.
And what is proven (and the biggest problem with MC) is that yes with medication you can control the symptoms (mostly entocort), but once you stop medication the symptoms will come back. Not any medication does cure MC (I wish it was true)
Please feel free to follow your own path in dealing with MC, if you prefer to take medication and not into the diet, because scientific prove is missing, than you are here totally free to do it.
Prove that gluten cause or a gluten free diet can cure MC is not there. But there are suggestions that lead in that direction, if you google on gluten free and MC (or CC or LC) there are a view studies that suggest that there might be a relation between gluten and MC. Also (and this is proven) about 4% of people with celiac have MC, that number is a 100 to 1000 higher than for peopit in my case to, is take a closer look in le that don't have celiac.
What I did all my other bowel/health complains and I could recognize a lot it in the classic celiac symptoms. For example the 6 month pregnant belly (bloating). I can assure my belly is much flatter, since I eat gluten free.
Diet is considered is one of the options here to treat MC (for a lot of us the best option and a lot of us are really convinced, but I don't think anyone here would push somebody else to it to, if somebody is not into it for whatever reason. Not believing it, to much effort or whatever. We are all free here to choose whatever we want, thanks god)
In general we are not anti medication here, a lot of use medication in combination with diet. I am one of them.
Also we are not anti doctor or anti GI (also in general), a lot of us visit the GI regular, it's not or/or, its more and/and.
Problem is that I have read a lot of stories here of GI's not treating MC very well. Wrong medication, tempering it down to early, considering it a minor problem. And for a lot of us (me including) it's a live changing disease.
And what is proven (and the biggest problem with MC) is that yes with medication you can control the symptoms (mostly entocort), but once you stop medication the symptoms will come back. Not any medication does cure MC (I wish it was true)
Please feel free to follow your own path in dealing with MC, if you prefer to take medication and not into the diet, because scientific prove is missing, than you are here totally free to do it.
Welcome Aquilega,
So sorry you have MC, but you have come to the right place for the best information and especially the support. I think it is so hard for some of us to understand all of this. You have eaten the same food all of your life and now all of a sudden you can't eat the things you love. I am pretty positive that I am dairy intolerant, I thought I was eating a DF diet until Tex noticed in one of my posts that I was still eating yogurt. He mentioned it to me and I stopped. That sure helped a lot. I don't know about gluten yet. I am not on a GF diet right now and waiting for my lab tests from Enterolab. I think that most of us are in denial in the beginning, at least I was. After going through this off and on for 8 months I knew I had to change my diet. And, it may come done to more than just dairy, only time will tell.
You will never find more caring and understanding people than those on this forum. They will answer any question you may have and will do their best to help you. Where else could you find so many people in one place suffering from the same ailments? Questions are good too, and we all learn from them.
Good luck with your research.
Nancy
So sorry you have MC, but you have come to the right place for the best information and especially the support. I think it is so hard for some of us to understand all of this. You have eaten the same food all of your life and now all of a sudden you can't eat the things you love. I am pretty positive that I am dairy intolerant, I thought I was eating a DF diet until Tex noticed in one of my posts that I was still eating yogurt. He mentioned it to me and I stopped. That sure helped a lot. I don't know about gluten yet. I am not on a GF diet right now and waiting for my lab tests from Enterolab. I think that most of us are in denial in the beginning, at least I was. After going through this off and on for 8 months I knew I had to change my diet. And, it may come done to more than just dairy, only time will tell.
You will never find more caring and understanding people than those on this forum. They will answer any question you may have and will do their best to help you. Where else could you find so many people in one place suffering from the same ailments? Questions are good too, and we all learn from them.
Good luck with your research.
Nancy