Visit the Microscopic Colitis Foundation Website
Hello,
I too have just been diagnosed with MC with blunting of the villi. I am on Entocort 6mg and Asacol 400mg 8 tabs a day and am 33 year old female. I am having lose stools once to two times daily now. At it's worst I was having 20 plus bowel movements a day losing 4L a day from my bowels and was in the hospital for 22 days. I will be sending my stool off to enterolabs on monday.
I am wondering why more dont talk about Pepto Bismol on the board? Is is successful for some in addition to diet? I know I read that some cannot tolerate it.
For now am learning the gluten free diet and staying away from dairy and now probably soy. Will get more of an idea of what to really do once my stool test are back.
Thanks so much for all you all do on this board as I have been reading for a few weeks now. This post really helped at seeing just how long it might take for remission and what I need to do at achieve it.
Hope
@ Hopeliveshere
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Hopeliveshere
- Little Blue Penguin
- Posts: 31
- Joined: Sat Apr 25, 2009 8:54 pm
Another Young Female
Mast Cells, Fibromyalgia, Chronic Fatigue
@ Hopeliveshere
Hopeliveshere Hope, I just didn't want your first post to be "lost" in the "help me please" thread so I started this one so people would know you are with us.
It sounds like you have had a rough time of it but I'm glad to hear that you are now on Entocort. I hope your symptoms continue to improve. I'm assuming you are also Celiac since you have blunting of the Villi. I'm glad you found some useful information and I encourage you to ask questions.......
Welcome to the board.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hope, welcome 
!
It sounds as if you are on the road to recovery, and I can imagine how thrilled you must be. Your plan sounds like a good one! Yes, it does take TIME for the gut to heal. As I have mentioned, it took me 9 mo. of diet to get rid of the diarrhea. The joint/muscle aches and pains were gone much more quickly - within a few months. Energy level was the last to return - I'd say it took a full 2 years before the fatigue was gone.
Please ask any questions you have. We have all walked in your shoes and totally understand what it's like to live with this disease.
Love,
Polly
!It sounds as if you are on the road to recovery, and I can imagine how thrilled you must be. Your plan sounds like a good one! Yes, it does take TIME for the gut to heal. As I have mentioned, it took me 9 mo. of diet to get rid of the diarrhea. The joint/muscle aches and pains were gone much more quickly - within a few months. Energy level was the last to return - I'd say it took a full 2 years before the fatigue was gone.
Please ask any questions you have. We have all walked in your shoes and totally understand what it's like to live with this disease.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
HOPE~~~~~~As Polly said--we all have walked in your shoes---maybe took different STEPS but we got to that wellness road----as U too will do--
Ask any Question U need to------help is at your doorstep~~~~
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Welcome, Hope!
I also have MC with Celiac, too. There's lots to learn on this board. I have found it to be the most reliable, useful source of information and support around. Please jump in, read, and ask anything...we've heard, and in many cases experienced, it all before and nothing can gross us out!
Courtney
I also have MC with Celiac, too. There's lots to learn on this board. I have found it to be the most reliable, useful source of information and support around. Please jump in, read, and ask anything...we've heard, and in many cases experienced, it all before and nothing can gross us out!
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Hope,
Welcome to our internet family. It's not clear whether or not you have a celiac diagnosis, also, but as Shirley said, with blunting of your small intestinal villi, you definitely qualify for a celiac diagnosis. More and more people are showing up with both celiac disease, and MC, as the GI docs learn more about diagnosing these diseases.
The reason why we do not "promote" the Pepto Bismol treatment, is because Dr. Fine no longer recommends it. He is the GI doc who first discovered that it helped to control the symptoms of MC, and initially, he recommended it, along with the GF diet. Unfortunately, most other GI docs, in their infinite wisdom, believed that diet has nothing to do with MC, so they recommended the Pepto treatment, without bothering to tell their patients that they needed to follow a GF diet, also. Consequently, after the 8-week Pepto treatment ended, it wasn't long before most of them relapsed, and they were back where they started.
Dr. Fine stopped recommending the Pepto treatment, because a fair percentage of patients have adverse reactions to it, and it is not really very effective, (in the long run), anyway, unless the GF diet is followed. These days, he recommends the diet alone, I believe.
That said, the Pepto treatment still works for some patients, (especially if the GF diet is adopted), but there are better choices available, these days, if you want to take a med to control the disease. Bismuth is a heavy metal, and if the treatment is continued for too long a period, a toxic buildup of bismuth in the body, is a definite risk. It is our opinion, (the consensus of opinion of the members of this board), that if someone wants to take a med, to help control their symptoms, while the diet is helping the gut to heal, Entocort is a better choice.
Some GI docs prefer to prescribe both Entocort and a 5-ASA med, (such as Asacol), with the intention of phasing out the Entocort, and maintaining remission by means of the 5-ASA med, after remission is achieved. (Those are docs who generally believe that diet has nothing to do with MC). With celiac disease, though, you have no choice - you must eliminate at least gluten from your diet, so you might as well eliminate the rest of the problem foods, and control both MC and celiac sprue by diet, for the long run. For those patients who are so sensitive that they have trouble eliminating all of their food intolerances, usually meds such as Asacol are not effective, anyway, and Entocort will need to be continued, in order to control the symptoms until all of the food intolerances have been removed from the diet.
I hope that answers your question about the Pepto treatment. We are all learning together, and by sharing experiences and opinions, we are able to figure out what works best, and what doesn't. There are several ways to go about it, so everyone has to find a plan that works best for them, and their own lifestyle. Regardless of how we go about it, we all have the same goal - to get our lives back.
Again, welcome to the board.
Tex (Wayne)
Welcome to our internet family. It's not clear whether or not you have a celiac diagnosis, also, but as Shirley said, with blunting of your small intestinal villi, you definitely qualify for a celiac diagnosis. More and more people are showing up with both celiac disease, and MC, as the GI docs learn more about diagnosing these diseases.
The reason why we do not "promote" the Pepto Bismol treatment, is because Dr. Fine no longer recommends it. He is the GI doc who first discovered that it helped to control the symptoms of MC, and initially, he recommended it, along with the GF diet. Unfortunately, most other GI docs, in their infinite wisdom, believed that diet has nothing to do with MC, so they recommended the Pepto treatment, without bothering to tell their patients that they needed to follow a GF diet, also. Consequently, after the 8-week Pepto treatment ended, it wasn't long before most of them relapsed, and they were back where they started.
Dr. Fine stopped recommending the Pepto treatment, because a fair percentage of patients have adverse reactions to it, and it is not really very effective, (in the long run), anyway, unless the GF diet is followed. These days, he recommends the diet alone, I believe.
That said, the Pepto treatment still works for some patients, (especially if the GF diet is adopted), but there are better choices available, these days, if you want to take a med to control the disease. Bismuth is a heavy metal, and if the treatment is continued for too long a period, a toxic buildup of bismuth in the body, is a definite risk. It is our opinion, (the consensus of opinion of the members of this board), that if someone wants to take a med, to help control their symptoms, while the diet is helping the gut to heal, Entocort is a better choice.
Some GI docs prefer to prescribe both Entocort and a 5-ASA med, (such as Asacol), with the intention of phasing out the Entocort, and maintaining remission by means of the 5-ASA med, after remission is achieved. (Those are docs who generally believe that diet has nothing to do with MC). With celiac disease, though, you have no choice - you must eliminate at least gluten from your diet, so you might as well eliminate the rest of the problem foods, and control both MC and celiac sprue by diet, for the long run. For those patients who are so sensitive that they have trouble eliminating all of their food intolerances, usually meds such as Asacol are not effective, anyway, and Entocort will need to be continued, in order to control the symptoms until all of the food intolerances have been removed from the diet.
I hope that answers your question about the Pepto treatment. We are all learning together, and by sharing experiences and opinions, we are able to figure out what works best, and what doesn't. There are several ways to go about it, so everyone has to find a plan that works best for them, and their own lifestyle. Regardless of how we go about it, we all have the same goal - to get our lives back.
Again, welcome to the board.
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.
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Hopeliveshere
- Little Blue Penguin
- Posts: 31
- Joined: Sat Apr 25, 2009 8:54 pm
You all are so sweet! Thanks Polly Barbara Shirley Courtney and Tex! You all are awesome! No celiac...blood test was negative...but going gluten free, soy free and casein free at present.
Ok a few more questions....
With the diet I want to start out on the best foot possible...so I am now only eating meat and veggies only and I have added some berries only using pure spices salt pepper olive oil and some garlic...blackberry and blueberry. What are the safest Veggies to eat? I know low fiber and stay away from beans ...Once I get relief fromt he diet I will add things back in one at a time. I guess a food journal would be good also. I am also only drinking water. So any ideas on the safest veggies?
Ok so does the severity of symptoms correlate with how sensitive to different foods?
Do most of you take multivitamins?
What is the best place to read about small bowel bacteria overgrowth?
YOU ALL ARE A BLESSING!!!!! May God bless you all! Jeannine
Ok a few more questions....
With the diet I want to start out on the best foot possible...so I am now only eating meat and veggies only and I have added some berries only using pure spices salt pepper olive oil and some garlic...blackberry and blueberry. What are the safest Veggies to eat? I know low fiber and stay away from beans ...Once I get relief fromt he diet I will add things back in one at a time. I guess a food journal would be good also. I am also only drinking water. So any ideas on the safest veggies?
Ok so does the severity of symptoms correlate with how sensitive to different foods?
Do most of you take multivitamins?
What is the best place to read about small bowel bacteria overgrowth?
YOU ALL ARE A BLESSING!!!!! May God bless you all! Jeannine
Mast Cells, Fibromyalgia, Chronic Fatigue
Hi Jeannine!
I can eat almost any veggie now, but keep in mind I have been in remission for many years. I think some of the usual better-tolerated ones are carrots, squash and sweet potato. Probably best to avoid nightshades for now (tomato, eggplant, peppers). Also, I love broccoli, cauliflower, cabbage and brussels, but these are all gas-producing and you may have to wait a while. My all-time favorites are the leafy greens - kale, turnip/mustard greens, chard, etc. All veggies should be cooked well at your stage.
Since you are already avoiding several foods, have you checked out the hunter-gatherer (paleo) diet? Sometimes it is easiest to just jump to it.
Love,
Polly
I can eat almost any veggie now, but keep in mind I have been in remission for many years. I think some of the usual better-tolerated ones are carrots, squash and sweet potato. Probably best to avoid nightshades for now (tomato, eggplant, peppers). Also, I love broccoli, cauliflower, cabbage and brussels, but these are all gas-producing and you may have to wait a while. My all-time favorites are the leafy greens - kale, turnip/mustard greens, chard, etc. All veggies should be cooked well at your stage.
Since you are already avoiding several foods, have you checked out the hunter-gatherer (paleo) diet? Sometimes it is easiest to just jump to it.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Jeannine,
You seem to be off to a very good start.
I believe that most of us do take vitamins of some type, especially before we achieve remission, and many take multivitamins. Vitamins B-12 and D3 seem to be the two most likely to be deficient enough to cause symptoms for some of us. Electrolytes, (especially potassium), can be short, too, when we're experiencing diarrhea regularly.
When I was recovering, I ate only four vegetables, potatoes, squash, green beans, and broccoli, always well-cooked, of course. Potatoes were the only one that I ate virtually every day. The others I only ate occasionally. I followed a very restricted diet, for about two years, to give my gut adequate time to heal, before adding foods back into my diet. Today, of course, like Polly, I can eat any of them.
One of our members did a lot of research on SIBO, a few years ago. Here's one of those discussions:
http://www.perskyfarms.com/phpBB2/viewt ... light=sibo
Regarding your "misdiagnosis" of celiac disease. Let me preface this with the disclaimer that this is strictly my opinion, (though there are many who agree with me), and technically, your doctor is correct. However, the only reason he is correct, is because of the somewhat arbitrary original definition of celiac disease, namely that the patient's serology must reflect the presence of certain antibodies, in addition to damage to the villi of the small intestine, in order to justify a celiac diagnosis. Today, many researchers recognize that any villus damage identifies celiac disease, before the buildup of antibodies in the blood reaches a level where they can be detected by serum testing. IOW, IMO, the blood tests used are obsolete, and should be replaced by stool testing, since stool testing correctly identifies antibody production much, much earlier in the development of the disease, than the far less sensitive blood tests.
Because the diagnostic criteria were improperly defined in the first place, (using now-obsolete technology), many GI docs stubbornly cling to the old standards, and refuse to diagnose celiac disease, unless both markers are positive for celiac disease, (IOW, both serum antibodies, and villus damage). Many of the better informed GI docs, however, are beginning to recognize the problems with the original diagnostic criteria, and they are willing to diagnose celiac disease, based on more realistic standards.
For patients with both celiac symptoms and MC, however, it's a moot issue, anyway, because the diet can be used to control both issues, and once the MC is controlled, the celiac issues will also be controlled. IOW, MC is much more difficult to control than celiac disease, and requires an expanded treatment program, that includes features that will also resolve celiac issues.
Tex
You seem to be off to a very good start.
I believe that most of us do take vitamins of some type, especially before we achieve remission, and many take multivitamins. Vitamins B-12 and D3 seem to be the two most likely to be deficient enough to cause symptoms for some of us. Electrolytes, (especially potassium), can be short, too, when we're experiencing diarrhea regularly.
When I was recovering, I ate only four vegetables, potatoes, squash, green beans, and broccoli, always well-cooked, of course. Potatoes were the only one that I ate virtually every day. The others I only ate occasionally. I followed a very restricted diet, for about two years, to give my gut adequate time to heal, before adding foods back into my diet. Today, of course, like Polly, I can eat any of them.
One of our members did a lot of research on SIBO, a few years ago. Here's one of those discussions:
http://www.perskyfarms.com/phpBB2/viewt ... light=sibo
Regarding your "misdiagnosis" of celiac disease. Let me preface this with the disclaimer that this is strictly my opinion, (though there are many who agree with me), and technically, your doctor is correct. However, the only reason he is correct, is because of the somewhat arbitrary original definition of celiac disease, namely that the patient's serology must reflect the presence of certain antibodies, in addition to damage to the villi of the small intestine, in order to justify a celiac diagnosis. Today, many researchers recognize that any villus damage identifies celiac disease, before the buildup of antibodies in the blood reaches a level where they can be detected by serum testing. IOW, IMO, the blood tests used are obsolete, and should be replaced by stool testing, since stool testing correctly identifies antibody production much, much earlier in the development of the disease, than the far less sensitive blood tests.
Because the diagnostic criteria were improperly defined in the first place, (using now-obsolete technology), many GI docs stubbornly cling to the old standards, and refuse to diagnose celiac disease, unless both markers are positive for celiac disease, (IOW, both serum antibodies, and villus damage). Many of the better informed GI docs, however, are beginning to recognize the problems with the original diagnostic criteria, and they are willing to diagnose celiac disease, based on more realistic standards.
For patients with both celiac symptoms and MC, however, it's a moot issue, anyway, because the diet can be used to control both issues, and once the MC is controlled, the celiac issues will also be controlled. IOW, MC is much more difficult to control than celiac disease, and requires an expanded treatment program, that includes features that will also resolve celiac issues.
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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Hopeliveshere
- Little Blue Penguin
- Posts: 31
- Joined: Sat Apr 25, 2009 8:54 pm
Thanks to all of you for posting to me! Some more questions.
Tex and Polly,
You say you are in remission symptoms wise but what about recent findings on a colonoscopy?
What is your knowledge about crypt absecess and microscopic colitis? I know they are found in Ulcerative Colitis.
Thanks so much for all of your help!!!!!!!!!!!!!!!!!!
Jeannine
You say you are in remission symptoms wise but what about recent findings on a colonoscopy?
What is your knowledge about crypt absecess and microscopic colitis? I know they are found in Ulcerative Colitis.
Thanks so much for all of your help!!!!!!!!!!!!!!!!!!
Jeannine
Mast Cells, Fibromyalgia, Chronic Fatigue
Welcome Jeannine,
Sounds like you are well on your way to figuring out your intolerances. I would just like to point out that tolerance to vegetables is individual - some of the ones others mentioned, like green beans and squash really bother me, but I have actually had some others that were mentioned without problem.
I am wondering what Enterolab test(s) you ordered. You may want to consider getting tested for other foods (casein, soy, egg, yeast) - many of us have found those tests very useful in planning our diets. In the near future they will be adding a corn test - some members are also sensitive to corn. I personally found all of the tests useful in some way, including the genetic test and the malabsorption test - they just answered many questions that I had that couldn't be answered by other doctors and lab tests. Of course, finances are somewhat of an issue with Enterolab, as it's often not covered by insurance.
I noticed that you are soy free - just a word of advice. If you are indeeed react to soy, beware that many of us react to soy lecithin and soy oils. You may read in other places that these things are OK because they, in theory, should not have soy protein, but many of us found out by trial and error that we still react to all forms of soy. I am so sensitive that I react to ALL forms of legumes, even small amounts of pea flour. Soy is by far the most difficult sensitivity to manage - it really is in everything.
BTW, I like your handle "hopeliveshere". Having a good attitude helps tremendously as you go through this process.
Mary Beth
Sounds like you are well on your way to figuring out your intolerances. I would just like to point out that tolerance to vegetables is individual - some of the ones others mentioned, like green beans and squash really bother me, but I have actually had some others that were mentioned without problem.
I am wondering what Enterolab test(s) you ordered. You may want to consider getting tested for other foods (casein, soy, egg, yeast) - many of us have found those tests very useful in planning our diets. In the near future they will be adding a corn test - some members are also sensitive to corn. I personally found all of the tests useful in some way, including the genetic test and the malabsorption test - they just answered many questions that I had that couldn't be answered by other doctors and lab tests. Of course, finances are somewhat of an issue with Enterolab, as it's often not covered by insurance.
I noticed that you are soy free - just a word of advice. If you are indeeed react to soy, beware that many of us react to soy lecithin and soy oils. You may read in other places that these things are OK because they, in theory, should not have soy protein, but many of us found out by trial and error that we still react to all forms of soy. I am so sensitive that I react to ALL forms of legumes, even small amounts of pea flour. Soy is by far the most difficult sensitivity to manage - it really is in everything.
BTW, I like your handle "hopeliveshere". Having a good attitude helps tremendously as you go through this process.
Mary Beth
Hi Jeannine,
Crypt abscesses aren't unknown, with MC, but their presence should be minimal, at best. Here is part of the histopathological description of LC and CC, which covers your question about crypt abscesses:
http://www.histopathology-india.net/MCo.htm
I haven't had a colonoscopy in over 9 years.
Tex
Crypt abscesses aren't unknown, with MC, but their presence should be minimal, at best. Here is part of the histopathological description of LC and CC, which covers your question about crypt abscesses:
This is from:In both collagenous and lymphocytic colitis there is an increase in intra-epithelial lymphocytes (more than 20 lymphocytes per 100 epithelial cells compared to the normal value of 5 lymphocytes per 100 epithelial cells) and a moderate to marked increase in mononuclear cells (plasma cells and lymphocytes) in the lamina propria. Clusters of chronic inflammatory cells are present at the base of the crypts. Some eosinophils and mast cells are often present deep in the mucosa.
The crypt architecture and goblet cells are usually well preserved with no cryptitis or crypt abscess formation. Some cases have been reported showing minimal crypt architectural distortion, some goblet cell depletion, presence of neutrophils and focal surface epithelial damage.
In many of the documented cases of microscopic colitis there are overlapping features of both lymphocytic and collagenous colitis. There is striking histological similarities between coeliac disease and both collagenous and lymphocytic colitis.
Recently non-necrotizing pericryptal granulomas have been described in cases of microscopic colitis. These cases should not be confused with Crohn's disease.
It has been reported that Tenascin is a useful marker in the diagnosis of collagenous colitis.
http://www.histopathology-india.net/MCo.htm
I haven't had a colonoscopy in over 9 years.
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.