I was diagnosed with collagenous colitis less than a year ago, but the disease is not that new to me. My diarrhea started more than 20 years ago and has been a continuous fixture in my life ever since. A few years after I first got diarrhea I was diagnosed with diabetes 1. In 2004 I was diagnosed with vitiligo.
More than 15 years ago I had my first negative colonoscopy and gastroscopy, but it took another gastroscopy and 5 more colonoscopies before anybody thought of taking biopsies of the colon. In the meantime I had this funny thing called IBS. Autoimmunity, anaemia, fatigue and joint pain didn’t matter. It was still IBS. Large amounts of Imodium reduced the diarrhea to 5-6 times a day and got me through the day at work.
My sister has celiac disease, so just before the MC diagnosis I tried 2 months off gluten despite two negative gastroscopies. I did not notice any effect.
The specialist prescribed 9 mg Entocort for 6 weeks for the MC. 9 mg Entocort put me in remission in 3 days. I had effect of 6 mg as well, but not nearly as good. When I started on Entocort the doctor told me to take a calcium and vitamin D supplement. A later measurement of bone density showed osteopenia/borderline osteoporosis.
As soon as I got the MC diagnosis, I started reading everything I could find about it. One of the things that interested me most was that several studies showed strong correlation between MC and bile acid malabsorption (BAM)/bile acid diarrhea (BAD). The digestive symptoms of BAM/BAD are very similar to MC. A study showed that 44 % of patients with collagenous colitis had concurrent BAM/BAD and that 78 % of the patients with collagenous colitis responded to a bile acid sequestrant. The study was small, but several others points in the same direction.
I started treatment with cholestyramine (Questran Loc) 6 months ago, and I have been in remission since. At first I combined it with 6 mg Entocort, then with 3 mg Entocort. For the last 4 weeks cholestyramine has kept me in remission alone. I have no negative side effects of cholestyramine. It even has a couple of positive side effects (lower cholesterol and better insulin sensitivity). I think that bile acid binders are much more suitable for long term treatment than corticosteroids. For some of us, bile acid sequestrants might be more than mere symptom treatment. In a later post I might elaborate on that if anybody is interested. Has anybody else here any experience with bile acid sequestrants (cholestyramine, colestipol, colesevelam)?
Just another newbie ...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
HI Tor, I just wanted to say "Welcome" to our site. I don't have experience with bile acid sequestrants but I'm sure others will chime in. Glad to hear you finally got a diagnosis but I'm stunned how long you dealt with this disease before you docs took biopsies. Happy that you are finding your way to remission.
You'll find a lot of good information here.
Carol
You'll find a lot of good information here.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Tor,
Welcome to the discussion board. You are apparently one of the lucky few who respond to cholestyramine, because even though many members here have tried it over the years, I can recall only one or two of them who were able to enjoy lasting success with it, For many, it causes significant to intolerable cramps as side effects. It may serve you well for many years, but please be aware that the use of bile acid sequestrants is not totally without risk. As you have noted, it lowers cholesterol levels. While we are relatively young, that is a good thing. But as we pass middle age, it's no longer a good thing, because with advancing age (believe it or not) cholesterol levels are inversely proportional to longevity. IOW, once we get past roughly 65 years of age, the higher our cholesterol level, the longer we are likely to live. This correlation is very high (but of course your doctor will never mention it, because they are trained to believe that cholesterol should always be lower).
But there is another concern for diabetics. Diabetes is one of many syndromes that are classified as demyelinating diseases, and a condition known as demyelinating neuropathy is strongly associated with diabetes. Little medical research has been devoted to the possible causes of demyelination, but in general, lower cholesterol levels tend to be associated with increased risk of demyelinating events because of the fact that the myelin sheaths rely on an abundant supply of fatty acids and other lipids to maintain their integrity. Nerve fibers are protected by myelin sheaths, and when the myelin sheaths dry out, the nerves inside them die. So it may be prudent to keep an eye on your cholesterol level and not allow it to creep too low (despite what your doctor may claim). And if I were in that situation and I began to develop neurpathy, I would seek a better way to treat my MC (that did not involve the use of a bile acid sequestrant).
FWIW, here's why I believe that bile acid malabsorption is so common with MC (from pages 21—22 of my book):
11. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf
Please don't misunderstand me — I'm not claiming that using cholestyramine will lead to a disaster some day. There is a very good chance that it may never cause any problems for you. But just to be on the safe side, be on the lookout for any warning signs, and please do give some thought to making diet changes to control your MC, because all of us here have food sensitivities, and if we don't avoid those foods, they continue to cause inflammation all over our body, and that inflammation sets the stage for the development of other autoimmune diseases in the long run.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. You are apparently one of the lucky few who respond to cholestyramine, because even though many members here have tried it over the years, I can recall only one or two of them who were able to enjoy lasting success with it, For many, it causes significant to intolerable cramps as side effects. It may serve you well for many years, but please be aware that the use of bile acid sequestrants is not totally without risk. As you have noted, it lowers cholesterol levels. While we are relatively young, that is a good thing. But as we pass middle age, it's no longer a good thing, because with advancing age (believe it or not) cholesterol levels are inversely proportional to longevity. IOW, once we get past roughly 65 years of age, the higher our cholesterol level, the longer we are likely to live. This correlation is very high (but of course your doctor will never mention it, because they are trained to believe that cholesterol should always be lower).
But there is another concern for diabetics. Diabetes is one of many syndromes that are classified as demyelinating diseases, and a condition known as demyelinating neuropathy is strongly associated with diabetes. Little medical research has been devoted to the possible causes of demyelination, but in general, lower cholesterol levels tend to be associated with increased risk of demyelinating events because of the fact that the myelin sheaths rely on an abundant supply of fatty acids and other lipids to maintain their integrity. Nerve fibers are protected by myelin sheaths, and when the myelin sheaths dry out, the nerves inside them die. So it may be prudent to keep an eye on your cholesterol level and not allow it to creep too low (despite what your doctor may claim). And if I were in that situation and I began to develop neurpathy, I would seek a better way to treat my MC (that did not involve the use of a bile acid sequestrant).
Are you aware that the primary cause of osteoporosis is not corticosteroids, but celiac disease? Less than 19 % of the budesonide in Entocort is ever absorbed into the bloodstream, so it is unlikely that the Entocort has had a significant effect on your bone density unless you have taken it for a number of years. On the other hand, with a sister diagnosed with celiac disease, the odds are good that you are also a celiac, despite your lack of response to the GF diet. You probably share her genes. It is extremely common for celiacs who also have MC to be refractory to a gluten-free diet (because they also have other food sensitivities that prevent remission when only gluten is avoided). But the lack of a response to a GF diet does not rule out celiac disease, unfortunately.A later measurement of bone density showed osteopenia/borderline osteoporosis.
FWIW, here's why I believe that bile acid malabsorption is so common with MC (from pages 21—22 of my book):
And here is reference 11 from that quote:Bile is released by the gallbladder into the small intestine to aid in the digestion of fats. Normally, about 90 % of excreted bile acids are reabsorbed from the intestines and recycled back to the liver and the gallbladder. The reabsorption takes place in the terminal ileum (the bottom end of the small intestine). The reabsorption process may be compromised when the ileum, along with nearby areas in the colon, becomes inflamed. If these bile salts cannot be reabsorbed and they remain in the fecal stream, they will often tend to initiate diarrhea and possibly other symptoms as well. It’s quite common for the inflammation associated with MC to extend into the terminal ileum.11
Logical analysis suggests that a possible reason why the bile fatty acids may not be properly recycled when they get to the terminal ileum (as they should be, if the digestive process were proceeding normally) might be because they are still coating the fat globules when they reach the ileum and consequently they are in a state where they cannot be absorbed. In other words, if the pancreatic lipase does not successfully hydrolyze the fats, then the bile salts cannot be reabsorbed. Since they cannot be absorbed and recycled, they pass on into the colon, contributing to diarrhea in the process.
That doesn't necessarily mean that the excess bile is the primary reason for the diarrhea, however. The failure of the pancreatic enzymes to hydrolyze the fats may be the cause of the problem, and the ultimate reason for the compromised pancreatic function is very likely connected with widespread digestive system inflammation that leads to pancreatic inflammation, known as pancreatitis. Also, consider that if most of the bile is lost, rather than recycled, the total demand for bile can increase to as high as approximately 10 times the normal amount. In the long run, losing all that recycled bile is bound to place abnormal demands upon the liver and gallbladder to keep up with the body's needs. This might at least partially explain why gallbladder problems are so commonly associated with microscopic colitis.
11. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf
Please don't misunderstand me — I'm not claiming that using cholestyramine will lead to a disaster some day. There is a very good chance that it may never cause any problems for you. But just to be on the safe side, be on the lookout for any warning signs, and please do give some thought to making diet changes to control your MC, because all of us here have food sensitivities, and if we don't avoid those foods, they continue to cause inflammation all over our body, and that inflammation sets the stage for the development of other autoimmune diseases in the long run.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group 
(Sympathies that you had to find us)
my GI prescribed Questran Lite when I was first Dx'd to slow motility/reduce the fluid in the poop.
It worked well for me for that purpose. What the GI didnt tell me, but the pharmacist did, was that it can affect the absorption of many medications, at the time I had to set the alarm and use the Questran at 11pm at night to avoid issues with the other meds I was taking. Further, it is quite harsh on your tooth enamel, be sure to brush your teeth after taking it.
Lucky for me, I found this site within days of my MC Dx, did lots of reading, at that time, I had already been following a gluten and lactose free eating plan for over 9 years so to modify the eating plan further to be strict gluten free, dairy free, yeast free and soy free was not hard. the hard part for me was giving up fruit and salads and raw veges. By implementing the low fibre, minimal ingredients, bland eating plan, I removed the need for medications such as questran and imodium within 4 months.
one thing in MC world is that we are all very different, a med that works well for one person can be endless hell for another!!
the key to success is figuring out what works for you, that is affordable, sustainable, and does not pose too many long term health issues. Sounds like you are on that path, hope the improvements and wellness continue
regards
Gabes
(Sympathies that you had to find us)
my GI prescribed Questran Lite when I was first Dx'd to slow motility/reduce the fluid in the poop.
It worked well for me for that purpose. What the GI didnt tell me, but the pharmacist did, was that it can affect the absorption of many medications, at the time I had to set the alarm and use the Questran at 11pm at night to avoid issues with the other meds I was taking. Further, it is quite harsh on your tooth enamel, be sure to brush your teeth after taking it.
Lucky for me, I found this site within days of my MC Dx, did lots of reading, at that time, I had already been following a gluten and lactose free eating plan for over 9 years so to modify the eating plan further to be strict gluten free, dairy free, yeast free and soy free was not hard. the hard part for me was giving up fruit and salads and raw veges. By implementing the low fibre, minimal ingredients, bland eating plan, I removed the need for medications such as questran and imodium within 4 months.
one thing in MC world is that we are all very different, a med that works well for one person can be endless hell for another!!
the key to success is figuring out what works for you, that is affordable, sustainable, and does not pose too many long term health issues. Sounds like you are on that path, hope the improvements and wellness continue
regards
Gabes
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tor
Welcome to the group.
I had gall bladder surgery in April 2009. About 6 months later I had WD and nothing would control it. My dr. prescribed Welchol, taking 6 huge pills each day controlled that symptom until Nov 2013, 4 years. For those 4 years I steadily experienced more bone loss, more pain from fibro and osteoarthritis, and took more and more medications for pain.
When I finally got a dx and began a restricted diet all those symptoms were either greatly lessened or completely gone. I am now off all pain meds, and feeling great.
Just remember that even though the Questran may control the D symptom it is not healing the underlying cause and problems. Also there are other symptoms that may continue to get worse.
You said you had tried GF. That is not the only food intolerance most of us have. I react more to soy than anything, and it's in everything!
Welcome to the group.
I had gall bladder surgery in April 2009. About 6 months later I had WD and nothing would control it. My dr. prescribed Welchol, taking 6 huge pills each day controlled that symptom until Nov 2013, 4 years. For those 4 years I steadily experienced more bone loss, more pain from fibro and osteoarthritis, and took more and more medications for pain.
When I finally got a dx and began a restricted diet all those symptoms were either greatly lessened or completely gone. I am now off all pain meds, and feeling great.
Just remember that even though the Questran may control the D symptom it is not healing the underlying cause and problems. Also there are other symptoms that may continue to get worse.
You said you had tried GF. That is not the only food intolerance most of us have. I react more to soy than anything, and it's in everything!
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Re: Just another newbie ...
Tor wrote:I tried 2 months off gluten despite two negative gastroscopies. I did not notice any effect.
Hello Tor,
Welcome to the forum, I'm a newbie too.
The only thing I wanted to say to you is that 2 months off gluten is far too less to be able to judge if there is an effect or not. I went gluten AND dairy free April 2013. After almost 12 months (and 12 kilos), I could begin to say that it had had an effect.
But, you have come to the right place as to knowledgeable people, with big hearts here at the forum. I have learned a lot.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
I agree. Two months is not long enough to test gluten because the half life of the antibodies you might be producing is 4 months. All of us has food intolerances and for lasting remission, you will probably have to figure those out. The top four are gluten, dairy, soy, and eggs. But many of us have more then those. Plus, eating fiber ( raw fruits and veggies, beans, legumes…etc.) while your gut is inflamed also can prevent remission.
Leah
Leah
Hi all,
Thanks for your valuable input. This is obviously a very helpful community.
I have been suspicius of gluten, and that's why I went gluten free last year. I stopped when I got the diagnosis, but now I see that it might have been too early. Despite of the resolution of the diarrhea I still have some fatigue and joint issues (not too bad though). The fatigue resembles pollen allergy, so histamines might have something to do with it (I've read MC book). I think the fatigue/joint issues has worsened again after stopping Entocort. It seems like the immune system still is activated, so more gluten free trials can follow. Due to several family members with different gluten issues, I still think gluten is a more probable culprit than lactose and soy. Coffee is the only thing I've noticed has made my diarrhea worse. Despite that I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
I'm a bit puzzled that so few of the board members has responded to cholestyramin given the very high correlation between BAM/BAD and MC. In Europe they do a so-called SeHCAT-test in order to diagnose BAM/BAD, and this test is quite reliable. I took the SeHCAT test this spring and it showed reduced bile retention just over the defined pathological level. Several studies have shown good response of bile acid sequestrants well over the defined pathological level both for MC patients and IBS patients:
Ung, K-A, Gilberg R., Kilander A., Abrahamsson, H. Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 2000;46. S. 170-175. http://dx.doi.org/10.1136/gut.46.2.170
Bajor, A., Törnblom, H., Rudling, M., Ung, K. A., & Simrén, M. (2014). Increased colonic bile acid exposure: a relevant factor for symptoms and treatment in IBS. Gut, gutjnl-2013.
http://dx.doi.org/10.1136/gutjnl-2013-305965
Another interesting point regarding bile acids is that at least two very different studies have shown that Entocort increases bile acid retention very significantly. One of these studies was performed on CC-patients. In a quite new swedish doctoral thesis a laboratory study showed that bile acids can contribute to leaky guts in CC patients. The author speculate that increased bacterial uptake in the mucosa in MC patients might be the reason for the quick recurrence of inflammation after seizure of treatment with Entocort. The author of this study is the chair of the European Microscopic Colitis Group (http://www.emcg-ibd.eu/).
I am aware that bile acid sequestrants can bind more than bile, for example medication (and antigenes). I take my other meds several hours before or after the cholestyramine. The potential tooth problem was new to me. I will watch out for that. BTW, colesevelam is a newer and more effective bile acid sequestrant with easier administration and less side effects.
Tex mentions neuropathy danger with cholesterol lowering drugs, especially for persons with diabetes. This is very interesting, and totally new to me. I am sceptical to statins, but mostly because lipophilic statins has been shown to reduce bile acid retention. I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse. Add that my mother got bad diarrhea after starting with Simvastatin last year. The diarrhea stoppet when she seponated the statins. I have changed from 40 mg Simvastatin to 20 mg Pravastatin. Pravastatin isn't supposed to meddle with the bile acid synthesis in the same way, but now I have to rethink the cholesterol treatment again. My levels wasnt't that high to begin with, so I wouldn't have been treated if it wasn't for the diabetes.
I agree with Tex that there is no way that Entocort can be blamed for the low bone density. I have had the test only 3 months after starting treatment with Entocort. The GI specialist just wanted to asses my base levels. I have had anaemia for 5 years, and I think malabsorption of vitamin D, K and/or calcium is to blame. This is usual in IBD, and has also been shown in a small CC study:
Lorinczy, Katali, Lakatos, Gabor, Mullner, Katalin et al. Low bone mass in microscopic colitis, BMC Gastroenterology, Volume 11, 2011; 1:58-66.
http://dx.doi.org/10.1186/1471-230X-11-58
Sorry about all the long rave about bile acids. I am very hung up on that. The interest is partly because it clearly is an even more underrecognized condition than MC. Studies have shown that 10-20 % of IBS patients really has MC. A large metastudy has shown that 1/3 of IBS patients really has BAM/BAD. And I don't like the IBS diagnosis ...
---Tor
Thanks for your valuable input. This is obviously a very helpful community.
I have been suspicius of gluten, and that's why I went gluten free last year. I stopped when I got the diagnosis, but now I see that it might have been too early. Despite of the resolution of the diarrhea I still have some fatigue and joint issues (not too bad though). The fatigue resembles pollen allergy, so histamines might have something to do with it (I've read MC book). I think the fatigue/joint issues has worsened again after stopping Entocort. It seems like the immune system still is activated, so more gluten free trials can follow. Due to several family members with different gluten issues, I still think gluten is a more probable culprit than lactose and soy. Coffee is the only thing I've noticed has made my diarrhea worse. Despite that I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
I'm a bit puzzled that so few of the board members has responded to cholestyramin given the very high correlation between BAM/BAD and MC. In Europe they do a so-called SeHCAT-test in order to diagnose BAM/BAD, and this test is quite reliable. I took the SeHCAT test this spring and it showed reduced bile retention just over the defined pathological level. Several studies have shown good response of bile acid sequestrants well over the defined pathological level both for MC patients and IBS patients:
Ung, K-A, Gilberg R., Kilander A., Abrahamsson, H. Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 2000;46. S. 170-175. http://dx.doi.org/10.1136/gut.46.2.170
Bajor, A., Törnblom, H., Rudling, M., Ung, K. A., & Simrén, M. (2014). Increased colonic bile acid exposure: a relevant factor for symptoms and treatment in IBS. Gut, gutjnl-2013.
http://dx.doi.org/10.1136/gutjnl-2013-305965
Another interesting point regarding bile acids is that at least two very different studies have shown that Entocort increases bile acid retention very significantly. One of these studies was performed on CC-patients. In a quite new swedish doctoral thesis a laboratory study showed that bile acids can contribute to leaky guts in CC patients. The author speculate that increased bacterial uptake in the mucosa in MC patients might be the reason for the quick recurrence of inflammation after seizure of treatment with Entocort. The author of this study is the chair of the European Microscopic Colitis Group (http://www.emcg-ibd.eu/).
I am aware that bile acid sequestrants can bind more than bile, for example medication (and antigenes). I take my other meds several hours before or after the cholestyramine. The potential tooth problem was new to me. I will watch out for that. BTW, colesevelam is a newer and more effective bile acid sequestrant with easier administration and less side effects.
Tex mentions neuropathy danger with cholesterol lowering drugs, especially for persons with diabetes. This is very interesting, and totally new to me. I am sceptical to statins, but mostly because lipophilic statins has been shown to reduce bile acid retention. I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse. Add that my mother got bad diarrhea after starting with Simvastatin last year. The diarrhea stoppet when she seponated the statins. I have changed from 40 mg Simvastatin to 20 mg Pravastatin. Pravastatin isn't supposed to meddle with the bile acid synthesis in the same way, but now I have to rethink the cholesterol treatment again. My levels wasnt't that high to begin with, so I wouldn't have been treated if it wasn't for the diabetes.
I agree with Tex that there is no way that Entocort can be blamed for the low bone density. I have had the test only 3 months after starting treatment with Entocort. The GI specialist just wanted to asses my base levels. I have had anaemia for 5 years, and I think malabsorption of vitamin D, K and/or calcium is to blame. This is usual in IBD, and has also been shown in a small CC study:
Lorinczy, Katali, Lakatos, Gabor, Mullner, Katalin et al. Low bone mass in microscopic colitis, BMC Gastroenterology, Volume 11, 2011; 1:58-66.
http://dx.doi.org/10.1186/1471-230X-11-58
Sorry about all the long rave about bile acids. I am very hung up on that. The interest is partly because it clearly is an even more underrecognized condition than MC. Studies have shown that 10-20 % of IBS patients really has MC. A large metastudy has shown that 1/3 of IBS patients really has BAM/BAD. And I don't like the IBS diagnosis ...
---Tor
Life's hard and then you die
Hi all,
Thanks for your valuable input. This is obviously a very helpful community.
I have been suspicius of gluten, and that's why I went gluten free last year. I stopped when I got the diagnosis, but now I see that it might have been too early. Despite of the resolution of the diarrhea, I still have some fatigue and joint issues (not too bad though). The fatigue resembles what you get from pollen allergy, so histamines might have something to do with it (I read the MC book by Tex this weekend). I think the fatigue/joint issues has worsened again after stopping Entocort. It seems like the immune system still is activated, so more gluten free trials can follow. Due to several family members with different gluten issues, I still think gluten is a more probable culprit than lactose and soy. Coffee is the only thing I've noticed has made my diarrhea worse, BTW. Despite that I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
I'm a bit puzzled that so few of the board members has responded to cholestyramin given the very high correlation between BAM/BAD and MC. In Europe they do a SeHCAT-test in order to diagnose BAM/BAD. I took the SeHCAT test this spring, and it showed reduced bile retention just over the defined pathological level. Several studies have shown good response of bile acid sequestrants well over the defined pathological level both for MC patients and IBS patients:
Ung, K-A, Gilberg R., Kilander A., Abrahamsson, H. Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 2000;46. S. 170-175. http://dx.doi.org/10.1136/gut.46.2.170
Bajor, A., Törnblom, H., Rudling, M., Ung, K. A., & Simrén, M. (2014). Increased colonic bile acid exposure: a relevant factor for symptoms and treatment in IBS. Gut, gutjnl-2013.
http://dx.doi.org/10.1136/gutjnl-2013-305965
Another interesting point regarding bile acids is that at least two very different studies have shown that Entocort increases bile acid retention very significantly. One of these studies was performed on MC-patients. In a swedish doctoral thesis a laboratory study showed that bile acids can contribute to leaky guts in CC patients. The author speculate that increased bacterial uptake in the mucosa in MC patients might be the reason for the quick recurrence of inflammation after seizure of treatment with Entocort. The author of this study is the chair of the European Microscopic Colitis Group (http://www.emcg-ibd.eu/).
I'm aware that bile acid sequestrants can bind more than bile, for example medication (and antigenes). I take my other meds at least one hour before or 4 hours after the cholestyramine. The potential tooth problem was new to me. I will watch out for that. BTW, colesevelam is a newer and supposedly more effective bile acid sequestrant with easier administration and less side effects.
Tex mentions neuropathy danger with cholesterol lowering drugs, especially for persons with diabetes. This is very interesting, and totally new to me. I am sceptical to statins, but mostly because lipophilic statins has been shown to reduce bile acid retention. I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse. Add that my mother got bad diarrhea after starting with Simvastatin last year. The diarrhea stoppet when she seponated the statins. I have changed from 40 mg Simvastatin to 20 mg Pravastatin. Pravastatin isn't supposed to meddle with the bile acid synthesis in the same way, but now I have to rethink the cholesterol treatment again. My levels wasnt't that high to begin with, so I wouldn't have been treated if it wasn't for the diabetes.
I agree with Tex that there is no way that Entocort can be blamed for the low bone density. I have had the test only 3 months after starting treatment with Entocort. The GI specialist just wanted to asses my base levels. I have had anaemia for 5 years, and I think malabsorption of vitamin D, K and/or calcium is to blame. This is usual in IBD, and has also been shown in a small CC study:
Lorinczy, Katali, Lakatos, Gabor, Mullner, Katalin et al. Low bone mass in microscopic colitis, BMC Gastroenterology, Volume 11, 2011; 1:58-66.
http://dx.doi.org/10.1186/1471-230X-11-58
Sorry about all the long rave about bile acids. I am very hung up on that. The interest is partly because it clearly is an even more underrecognized condition than MC. Studies have shown that 10-20 % of IBS patients really have MC. A large metastudy has shown that 1/3 of IBS patients really have BAM/BAD. And I don't like the IBS diagnosis ...
I think that we are all different, but bile acid sequestrants should be useful for some of us.
---Tor
Thanks for your valuable input. This is obviously a very helpful community.
I have been suspicius of gluten, and that's why I went gluten free last year. I stopped when I got the diagnosis, but now I see that it might have been too early. Despite of the resolution of the diarrhea, I still have some fatigue and joint issues (not too bad though). The fatigue resembles what you get from pollen allergy, so histamines might have something to do with it (I read the MC book by Tex this weekend). I think the fatigue/joint issues has worsened again after stopping Entocort. It seems like the immune system still is activated, so more gluten free trials can follow. Due to several family members with different gluten issues, I still think gluten is a more probable culprit than lactose and soy. Coffee is the only thing I've noticed has made my diarrhea worse, BTW. Despite that I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
I'm a bit puzzled that so few of the board members has responded to cholestyramin given the very high correlation between BAM/BAD and MC. In Europe they do a SeHCAT-test in order to diagnose BAM/BAD. I took the SeHCAT test this spring, and it showed reduced bile retention just over the defined pathological level. Several studies have shown good response of bile acid sequestrants well over the defined pathological level both for MC patients and IBS patients:
Ung, K-A, Gilberg R., Kilander A., Abrahamsson, H. Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 2000;46. S. 170-175. http://dx.doi.org/10.1136/gut.46.2.170
Bajor, A., Törnblom, H., Rudling, M., Ung, K. A., & Simrén, M. (2014). Increased colonic bile acid exposure: a relevant factor for symptoms and treatment in IBS. Gut, gutjnl-2013.
http://dx.doi.org/10.1136/gutjnl-2013-305965
Another interesting point regarding bile acids is that at least two very different studies have shown that Entocort increases bile acid retention very significantly. One of these studies was performed on MC-patients. In a swedish doctoral thesis a laboratory study showed that bile acids can contribute to leaky guts in CC patients. The author speculate that increased bacterial uptake in the mucosa in MC patients might be the reason for the quick recurrence of inflammation after seizure of treatment with Entocort. The author of this study is the chair of the European Microscopic Colitis Group (http://www.emcg-ibd.eu/).
I'm aware that bile acid sequestrants can bind more than bile, for example medication (and antigenes). I take my other meds at least one hour before or 4 hours after the cholestyramine. The potential tooth problem was new to me. I will watch out for that. BTW, colesevelam is a newer and supposedly more effective bile acid sequestrant with easier administration and less side effects.
Tex mentions neuropathy danger with cholesterol lowering drugs, especially for persons with diabetes. This is very interesting, and totally new to me. I am sceptical to statins, but mostly because lipophilic statins has been shown to reduce bile acid retention. I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse. Add that my mother got bad diarrhea after starting with Simvastatin last year. The diarrhea stoppet when she seponated the statins. I have changed from 40 mg Simvastatin to 20 mg Pravastatin. Pravastatin isn't supposed to meddle with the bile acid synthesis in the same way, but now I have to rethink the cholesterol treatment again. My levels wasnt't that high to begin with, so I wouldn't have been treated if it wasn't for the diabetes.
I agree with Tex that there is no way that Entocort can be blamed for the low bone density. I have had the test only 3 months after starting treatment with Entocort. The GI specialist just wanted to asses my base levels. I have had anaemia for 5 years, and I think malabsorption of vitamin D, K and/or calcium is to blame. This is usual in IBD, and has also been shown in a small CC study:
Lorinczy, Katali, Lakatos, Gabor, Mullner, Katalin et al. Low bone mass in microscopic colitis, BMC Gastroenterology, Volume 11, 2011; 1:58-66.
http://dx.doi.org/10.1186/1471-230X-11-58
Sorry about all the long rave about bile acids. I am very hung up on that. The interest is partly because it clearly is an even more underrecognized condition than MC. Studies have shown that 10-20 % of IBS patients really have MC. A large metastudy has shown that 1/3 of IBS patients really have BAM/BAD. And I don't like the IBS diagnosis ...
I think that we are all different, but bile acid sequestrants should be useful for some of us.
---Tor
Life's hard and then you die
Hi Tor,
You are at the right place. If you don't have a copy or download of Tex's book it is a good resource. The info is at the top right hand corner. It's in English but your English is good.
Agree with the others.....try 4 months of GF DF and SF. (make sure to eliminate cheese and yogurt in a DF trial.) It took me about 2 years to feel back to my old self.
If your sister is celiac you are at high risk for gluten issues.
Brandy
You are at the right place. If you don't have a copy or download of Tex's book it is a good resource. The info is at the top right hand corner. It's in English but your English is good.
Agree with the others.....try 4 months of GF DF and SF. (make sure to eliminate cheese and yogurt in a DF trial.) It took me about 2 years to feel back to my old self.
If your sister is celiac you are at high risk for gluten issues.
Brandy
Hi all,
Thanks for your valuable input. This is obviously a very helpful community.
I have been suspicious of gluten, and that's why I went gluten free last year. I stopped when I got the MC diagnosis, but now I see that it might have been premature. Despite the resolution of the diarrhea, I still have some fatigue and joint issues (not too bad though). The fatigue resembles what you get from pollen allergy, so histamines might have something to do with it (I read the MC book by Tex this weekend). I think the fatigue/joint issues have worsened again after stopping Entocort. It seems like the immune system still is activated, so more gluten free trials will probably follow. Due to several family members with different gluten issues, I still think gluten is a more probable culprit than lactose and soy. Coffee is the only thing I've noticed has made my diarrhea worse, BTW. Despite that, I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
I'm a bit puzzled that so few of the board members have responded to cholestyramin given the very high correlation between BAM/BAD and MC. In Europe they do a SeHCAT-test in order to diagnose BAM/BAD. I took the SeHCAT test this spring, and it showed borderline BAM/BAD. Several studies have shown good response of bile acid sequestrants well over the defined pathological level both for MC patients and IBS patients:
Ung, K-A, Gilberg R., Kilander A., Abrahamsson, H. Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 2000;46. S. 170-175. http://dx.doi.org/10.1136/gut.46.2.170
Bajor, A., Törnblom, H., Rudling, M., Ung, K. A., & Simrén, M. (2014). Increased colonic bile acid exposure: a relevant factor for symptoms and treatment in IBS. Gut, gutjnl-2013. http://dx.doi.org/10.1136/gutjnl-2013-305965
Another interesting point regarding bile acids is that at least two very different studies have shown that Entocort increases bile acid retention very significantly. One of these studies was performed on MC-patients. In a swedish doctoral thesis a laboratory study showed that bile acids can contribute to leaky guts in CC patients. The author speculate that increased bacterial uptake in the mucosa in MC patients might be the reason for the quick recurrence of inflammation after seizure of treatment with Entocort. The author of this study is the chair of the European Microscopic Colitis Group (http://www.emcg-ibd.eu/).
I'm aware that bile acid sequestrants can bind more than bile, for example medication (and antigenes). I take my other meds at least one hour before or 4 hours after the cholestyramine. The potential tooth problem was new to me. I will watch out for that. BTW, colesevelam is a newer and supposedly more effective bile acid sequestrant with easier administration and less side effects.
Tex mentions neuropathy danger with cholesterol lowering drugs, especially for persons with diabetes. This is very interesting, and totally new to me. I am sceptical to statins, but mostly because lipophilic statins has been shown to reduce bile acid retention. I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse in the same period. Add that my mother got bad diarrhea after starting with Simvastatin last year. The diarrhea stoppet when she seponated the statins. I have changed from 40 mg Simvastatin to 20 mg Pravastatin. Pravastatin isn't supposed to meddle with the bile acid synthesis in the same way, but now I have to rethink the cholesterol treatment again. My levels wasn't that high to begin with, so I wouldn't have been treated if it wasn't for the diabetes.
I agree with Tex that there is no way that Entocort can be blamed for my low bone density. I took the bone mass test only 3 months after starting treatment with Entocort. The GI specialist just wanted to assess my base levels before Entocort treatment. I've had anaemia for 5 years, and it makes sense that malabsorption of vitamin D, K and/or calcium is to blame. Low bone mass is usual in IBD, and has also been shown in a small CC study:
Lorinczy, Katali, Lakatos, Gabor, Mullner, Katalin et al. Low bone mass in microscopic colitis, BMC Gastroenterology, Volume 11, 2011; 1:58-66. http://dx.doi.org/10.1186/1471-230X-11-58
BTW, two of my six colonoscopies showed visual abnormalities in the ileum, "like what you can see in Crohns disease". But biopsies of the ileum came back negative.
Sorry about the long rave about bile acids. I agree that we're all different, but bile acid sequestrants have potential for some of us.
Thanks again for all your interesting views.
---Tor
Thanks for your valuable input. This is obviously a very helpful community.
I have been suspicious of gluten, and that's why I went gluten free last year. I stopped when I got the MC diagnosis, but now I see that it might have been premature. Despite the resolution of the diarrhea, I still have some fatigue and joint issues (not too bad though). The fatigue resembles what you get from pollen allergy, so histamines might have something to do with it (I read the MC book by Tex this weekend). I think the fatigue/joint issues have worsened again after stopping Entocort. It seems like the immune system still is activated, so more gluten free trials will probably follow. Due to several family members with different gluten issues, I still think gluten is a more probable culprit than lactose and soy. Coffee is the only thing I've noticed has made my diarrhea worse, BTW. Despite that, I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
I'm a bit puzzled that so few of the board members have responded to cholestyramin given the very high correlation between BAM/BAD and MC. In Europe they do a SeHCAT-test in order to diagnose BAM/BAD. I took the SeHCAT test this spring, and it showed borderline BAM/BAD. Several studies have shown good response of bile acid sequestrants well over the defined pathological level both for MC patients and IBS patients:
Ung, K-A, Gilberg R., Kilander A., Abrahamsson, H. Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 2000;46. S. 170-175. http://dx.doi.org/10.1136/gut.46.2.170
Bajor, A., Törnblom, H., Rudling, M., Ung, K. A., & Simrén, M. (2014). Increased colonic bile acid exposure: a relevant factor for symptoms and treatment in IBS. Gut, gutjnl-2013. http://dx.doi.org/10.1136/gutjnl-2013-305965
Another interesting point regarding bile acids is that at least two very different studies have shown that Entocort increases bile acid retention very significantly. One of these studies was performed on MC-patients. In a swedish doctoral thesis a laboratory study showed that bile acids can contribute to leaky guts in CC patients. The author speculate that increased bacterial uptake in the mucosa in MC patients might be the reason for the quick recurrence of inflammation after seizure of treatment with Entocort. The author of this study is the chair of the European Microscopic Colitis Group (http://www.emcg-ibd.eu/).
I'm aware that bile acid sequestrants can bind more than bile, for example medication (and antigenes). I take my other meds at least one hour before or 4 hours after the cholestyramine. The potential tooth problem was new to me. I will watch out for that. BTW, colesevelam is a newer and supposedly more effective bile acid sequestrant with easier administration and less side effects.
Tex mentions neuropathy danger with cholesterol lowering drugs, especially for persons with diabetes. This is very interesting, and totally new to me. I am sceptical to statins, but mostly because lipophilic statins has been shown to reduce bile acid retention. I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse in the same period. Add that my mother got bad diarrhea after starting with Simvastatin last year. The diarrhea stoppet when she seponated the statins. I have changed from 40 mg Simvastatin to 20 mg Pravastatin. Pravastatin isn't supposed to meddle with the bile acid synthesis in the same way, but now I have to rethink the cholesterol treatment again. My levels wasn't that high to begin with, so I wouldn't have been treated if it wasn't for the diabetes.
I agree with Tex that there is no way that Entocort can be blamed for my low bone density. I took the bone mass test only 3 months after starting treatment with Entocort. The GI specialist just wanted to assess my base levels before Entocort treatment. I've had anaemia for 5 years, and it makes sense that malabsorption of vitamin D, K and/or calcium is to blame. Low bone mass is usual in IBD, and has also been shown in a small CC study:
Lorinczy, Katali, Lakatos, Gabor, Mullner, Katalin et al. Low bone mass in microscopic colitis, BMC Gastroenterology, Volume 11, 2011; 1:58-66. http://dx.doi.org/10.1186/1471-230X-11-58
BTW, two of my six colonoscopies showed visual abnormalities in the ileum, "like what you can see in Crohns disease". But biopsies of the ileum came back negative.
Sorry about the long rave about bile acids. I agree that we're all different, but bile acid sequestrants have potential for some of us.
Thanks again for all your interesting views.
---Tor
Life's hard and then you die
Statins are a known trigger for MC, in many cases.Tor wrote:I have been taking 40 mg Simvastatin for the last 5 years. That resulted in very low cholesterol levels, but the diarrhea, fatigue and joint problems got much worse in the same period.
Have your doctors checked your vitamin B-12 level? Malabsorption of B-12 is very common with MC, and B-12 deficiency is a common cause of anemia. B-12 deficiency can also be caused by a deficiency of folic acid in the diet.Tor wrote:I've had anaemia for 5 years, and it makes sense that malabsorption of vitamin D, K and/or calcium is to blame.
Did your doctors check your Faecal calprotectin level following those colonoscopy procedures? An elevated result could indicate Crohn's disease, whereas a normal level would tend to rule it out. Probably though, it's nothing to be concerned about. My terminal ileum looked rough, too.Tor wrote:BTW, two of my six colonoscopies showed visual abnormalities in the ileum, "like what you can see in Crohns disease". But biopsies of the ileum came back negative.
Here is my opinion on why your colon is being flooded with bile acids, and why bile acid sequestrants help to reduce diarrhea in your case:
Normally (as I mentioned before), around 90 % of bile acids are reabsorbed in the terminal ileum, and recycled. When that happens, they do not contribute to diarrhea, because they do not reach the colon. If your terminal ileum is sufficiently inflamed that the inflammation is actually visible to the naked eye (through the scope — this is called gross inflammation), then it's pretty clear that this inflammation is the likely cause of your malabsorption problem and the reason why your body cannot reabsorb the bile salts.
In the long run, you need to concentrate on a way to reduce/eliminate that inflammation in your terminal ileum, because that has very negative long-term implications. Treating the symptoms (diarrhea) with a bile-acid sequestrant is only a temporary crutch to alleviate a symptom. You need to find a doctor who is capable of understanding what is happening in your terminal ileum, so that the problem can be corrected. IMO, this is extremely important for your long-term health.
I can't find any research on this topic, but I have a nagging suspicion that the problems in your terminal ileum are somehow connected with the use of statins and/or bile acid sequestrants. Maybe you have a sensitivity to one or the other.
While it's true that statins work in the liver, the effect is applied in the terminal ileum. And statins are so popular among doctors that no one is likely to do any research that would contradict their use. Who would pay for such research? Certainly not the pharmaceutical companies.You're very welcome,
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tor
in line with the info provided by Tex above, taking medications to block or stop something happening in our digestion is a bandaid and not a good long term solution.
dont get me wrong, using the questran and the imodium to slow motility so I could keep working was necessary while I sorted out the eating and lifestyle plan that would provide me days with minimal symptoms.
long term, relying on those medications is not good. and none of those meds fix the root cause being 'inflammation'
it is ongoing inflammation that will cause multiple long term health issues
when you read some of the other posts/discussions here, you will see that many people that endure months (and for some years) of issues. Specialists and doctors do not fully understand MC. As tex discusses above, there are are indicators of where the issues are occurring in your digestion system, and wellness will elude you until you find the right practitioner who can help the root cause of the issue.
in line with the info provided by Tex above, taking medications to block or stop something happening in our digestion is a bandaid and not a good long term solution.
dont get me wrong, using the questran and the imodium to slow motility so I could keep working was necessary while I sorted out the eating and lifestyle plan that would provide me days with minimal symptoms.
long term, relying on those medications is not good. and none of those meds fix the root cause being 'inflammation'
it is ongoing inflammation that will cause multiple long term health issues
when you read some of the other posts/discussions here, you will see that many people that endure months (and for some years) of issues. Specialists and doctors do not fully understand MC. As tex discusses above, there are are indicators of where the issues are occurring in your digestion system, and wellness will elude you until you find the right practitioner who can help the root cause of the issue.
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 Tor:
Welcome! I am somewhat new to this forum myself.
Tex is correct. Bile acid diarrhea can result from malabsorption secondary to gastrointestinal disease. Thus, bile reabsorption issues are often caused by the gut inflammation and not the other way around. I would never discourage anyone from taking a medication that seems to be working for them. However, while the questran is binding the excess bile it is not getting to the root of the problem. The fact that you have celiac disease in your family is significant! I would certainly go gluten and dairy free, and reduce dietary fiber (to avoid physical irritation to the gut) for starters. These and other sensitivities are often at the root of MC. Long term use of bile acid sequestering agents can lead to intestinal obstruction and metabolic acidosis, both of which can be quite serious.
I hope this forum helps you discover alternative ways to control your MC.
Dr. Ann
Welcome! I am somewhat new to this forum myself.
Tex is correct. Bile acid diarrhea can result from malabsorption secondary to gastrointestinal disease. Thus, bile reabsorption issues are often caused by the gut inflammation and not the other way around. I would never discourage anyone from taking a medication that seems to be working for them. However, while the questran is binding the excess bile it is not getting to the root of the problem. The fact that you have celiac disease in your family is significant! I would certainly go gluten and dairy free, and reduce dietary fiber (to avoid physical irritation to the gut) for starters. These and other sensitivities are often at the root of MC. Long term use of bile acid sequestering agents can lead to intestinal obstruction and metabolic acidosis, both of which can be quite serious.
I hope this forum helps you discover alternative ways to control your MC.
Dr. Ann
You certainly have made me think more about the changes in terminal ileum and the malabsorption issues. I might have been to preoccupied with newer research showing that increased bile acid pool is more frequent than bile acid malabsorption. The visual changes in terminal ileum, and malabsorbtion of iron and calcium, can indicate that the excess bile in the colon is due to malabsorption as well.
Tex asks:
Dr Ann wrote:
Thanks again. You're really helping me see some of my issues from a different angle.
---Tor
Tex asks:
I can't see that they have. I will bring that up on my next consultation. My Hb level normalized quickly while on Entocort, though.Have your doctors checked your vitamin B-12 level?
The notes of visual changes to the terminal ileum are quite old - from 1999 and 2002. They didn't check calprotectin then, but it was checked twice last year a few months before the CC diagnosis. The levels were slightly raised; 137 and 179. I think these values are more consistent with MC than Crohns.Did your doctors check your Faecal calprotectin level following those colonoscopy procedures?
The changes in the ileum are way older than my use of statins and cholestyramine. Food sensitivities might explain it, though. I totally agree that statins has documented side effects which probably has contributed to the worsening of my condition the last 5 years prior to diagnosis. When it comes to MC, I have found some correlation with the use of statins, but no proof of causality. The potential for Simvastatin to contribute to BAM/BAD seems less questionable (through inhibiting ASBT which Entocort elevates).I can't find any research on this topic, but I have a nagging suspicion that the problems in your terminal ileum are somehow connected with the use of statins and/or bile acid sequestrants
Dr Ann wrote:
I think this is a very valid point! I'm starting to consider going gluten free again for a longer period of time. This leads to another question: Some blood tests states that HLA DQ2 was positive and HLA DQ8 was negative. Does anybody know what I should make of that? The comment is: "The patient has a tissue type that is consistent with celiac disease, but normal anti-tTG makes active celiac disease unlikely."Thus, bile reabsorption issues are often caused by the gut inflammation and not the other way around.
Thanks again. You're really helping me see some of my issues from a different angle.
---Tor
Life's hard and then you die