Shifting perspective on IBS - ScienceNordic article
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Brandy,
That's certainly good news that you've finally stopped the flare. And thanks for posting all the insight. That's very educational to have details on what works and what doesn't. I'm sure you're right about the things you're done to resolve the flare.
At one time many of us here believed that magnesium glycinate did not cause D (no matter how much we took). But there have been several posts contradicting that belief over the past few weeks, and my own experience confirms that if we are unable to absorb it (either because of absorption problems or because of taking too much), then it can definitely cause D.
I don't know if there is a seasonal effect (because of pollen allergies, or some unknown issue), but I find myself reducing my own dose these days, and as I do so the leg cramps are returning. It's hard to win. There is a known connection between magnesium deficiency and mast cell activity (magnesium deficiency causes increased mast cell activity). Now I'm wondering if there is also some sort of weird reverse effect because as my mast cell activity increases (due to increasing pollen counts), my normal magnesium supplement dose causes D. We know that increased mast cell activity can cause D, but why would decreasing magnesium intake reduce the D? I'm not sure if that's a paradox or simply a dilemma, but it doesn't make sense.
Tex
That's certainly good news that you've finally stopped the flare. And thanks for posting all the insight. That's very educational to have details on what works and what doesn't. I'm sure you're right about the things you're done to resolve the flare.
At one time many of us here believed that magnesium glycinate did not cause D (no matter how much we took). But there have been several posts contradicting that belief over the past few weeks, and my own experience confirms that if we are unable to absorb it (either because of absorption problems or because of taking too much), then it can definitely cause D.
I don't know if there is a seasonal effect (because of pollen allergies, or some unknown issue), but I find myself reducing my own dose these days, and as I do so the leg cramps are returning. It's hard to win. There is a known connection between magnesium deficiency and mast cell activity (magnesium deficiency causes increased mast cell activity). Now I'm wondering if there is also some sort of weird reverse effect because as my mast cell activity increases (due to increasing pollen counts), my normal magnesium supplement dose causes D. We know that increased mast cell activity can cause D, but why would decreasing magnesium intake reduce the D? I'm not sure if that's a paradox or simply a dilemma, but it doesn't make sense.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'm one of the ones spreading the word that magnesium glycinate doesn't cause D. That was what I had read and it has proven true for me. I've taken it for years without any problem while other forms of magnesium caused me problems. I clearly made the cardinal mistake of over generalization, assuming that what was true for me would be true for other people. I apologize for supplying misinformation.
Jean
Jean
I should clarify--I've taken the magnesium glycinate for years (actually from hearing about it from Jean) and never had a problem with D. I think however during a four month active flare it is something that I should have temporarily discontinued before I did. It wasn't until about week 10 or so that I realized that I needed to get serious about getting into remission.
It took me ditching white rice, Tinkyada brown rice pasta, olive oil, ghee and all of my other supplements to take me pretty quickly from explosive D 4 x in morning to kind of manageable D once in morning. I was left eating protein, bananas a few avacados and a few hard boiled eggs and magnesioum glycinate at night. I was reluctant to give up the mag glycinate as it really helps me sleep. I think being in a flare it is something that I should have considered eliminating sooner. It is hard to say how relevant eliminating the mag glycinate was as I started the cholestyrmine the same day.
In a flare situation I do better eliminating any and all supplements for awhile. I suspect the pill version of supplements keep inflammation going in the gut.
Overall I love the mag glycinate. It keeps my blood pressure normal and really helps me with sleep.
Hopefully this clarifies.
It took me ditching white rice, Tinkyada brown rice pasta, olive oil, ghee and all of my other supplements to take me pretty quickly from explosive D 4 x in morning to kind of manageable D once in morning. I was left eating protein, bananas a few avacados and a few hard boiled eggs and magnesioum glycinate at night. I was reluctant to give up the mag glycinate as it really helps me sleep. I think being in a flare it is something that I should have considered eliminating sooner. It is hard to say how relevant eliminating the mag glycinate was as I started the cholestyrmine the same day.
In a flare situation I do better eliminating any and all supplements for awhile. I suspect the pill version of supplements keep inflammation going in the gut.
Overall I love the mag glycinate. It keeps my blood pressure normal and really helps me with sleep.
Hopefully this clarifies.
Jean,
No apologies necessary. I thought the same, and I was promoting the same opinion, and so were others. And I still believe that when it is absorbed normally, magnesium glycinate isn't a problem for the vast majority of people (at least not in doses that are not totally unrealistic). But I've read that some people have genetic issues that prevent them from absorbing magnesium normally. And apparently some people may not be able to tolerate it (at least at certain times, or under certain conditions) for other (unknown) reasons.
Who knows? We may change our minds about it again after a few more years of experience, as we continue to learn about the mysteries of this disease and various satellite issues associated with it.
Tex
No apologies necessary. I thought the same, and I was promoting the same opinion, and so were others. And I still believe that when it is absorbed normally, magnesium glycinate isn't a problem for the vast majority of people (at least not in doses that are not totally unrealistic). But I've read that some people have genetic issues that prevent them from absorbing magnesium normally. And apparently some people may not be able to tolerate it (at least at certain times, or under certain conditions) for other (unknown) reasons.
Who knows? We may change our minds about it again after a few more years of experience, as we continue to learn about the mysteries of this disease and various satellite issues associated with it.
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.
http://www.healingwell.com/community/?f=17&m=2082398, http://www.healingwell.com/community/?f=26&m=1754328
These are not what I was looking for but comments from long term IBS-D folks or long term Crohn's users.
The drug does lower cholesterol. I'm not sure of the big picture long term issues.
These are not what I was looking for but comments from long term IBS-D folks or long term Crohn's users.
The drug does lower cholesterol. I'm not sure of the big picture long term issues.
cholestyramine help
Hello all,
Long time lurker, first time poster. Although you do not know me, I read daily (for 9 mos. or so), and have warm sentiments for Tex, Gabes, Polly, and Erica among many others who have helped me along this crazy journey. You all have, quite literally, been lifesavers.
I was diagnosed with LC several years ago, and have followed dietary suggestions (GF,DF,SF,EF) for many months with some success. Have also focused on getting my magnesium and D3 levels up, which has also made a difference. I've followed Erica's journey with much interest. Her "system" seems similar to mine, and after a recent flare, I visited my PCP to inquire about cholestyramine. My PCP has tried to talk me into trying Enteragam instead. She likes it because it's more natural, and doesn't bind the good bacteria or nutrients, with the bad. I'd never heard of it, so couldn't effectively argue my preferences with her, and now I fear I'm stuck with a trial I don't want or need. If I'm going to try something, I'd like it to be a treatment that has offered the users here some success.
Can anyone offer any insight?
Long time lurker, first time poster. Although you do not know me, I read daily (for 9 mos. or so), and have warm sentiments for Tex, Gabes, Polly, and Erica among many others who have helped me along this crazy journey. You all have, quite literally, been lifesavers.
I was diagnosed with LC several years ago, and have followed dietary suggestions (GF,DF,SF,EF) for many months with some success. Have also focused on getting my magnesium and D3 levels up, which has also made a difference. I've followed Erica's journey with much interest. Her "system" seems similar to mine, and after a recent flare, I visited my PCP to inquire about cholestyramine. My PCP has tried to talk me into trying Enteragam instead. She likes it because it's more natural, and doesn't bind the good bacteria or nutrients, with the bad. I'd never heard of it, so couldn't effectively argue my preferences with her, and now I fear I'm stuck with a trial I don't want or need. If I'm going to try something, I'd like it to be a treatment that has offered the users here some success.
Can anyone offer any insight?
Hello Mary,
Welcome to our Internet family. I had never heard of that product before either, so I had to look it up. Apparently their sales rep did a good job with your PCP.
Their website appears to be mostly a collection of smoke and mirrors designed to make the product appear to be terrific without actually revealing what it is made from. But if you wade through the "Medical Professional" information, you can see that basically the product is nothing but a beef protein supplement. Their description of it as a "medical food" makes it appear more sophisticated than that of course, but basically, as far as I can tell, it's nothing more than a beef protein supplement made from the lymphocytes and other glycoproteins (immunoglobulins) found in the plasma of cow's blood. Immunoglobulins function as antibodies or receptors in immune system responses. They apparently use fresh blood, because after clotting, the serum no longer contains lymphocytes (or platelets) as plasma does, so they couldn't legitimately call it "serum-derived" unless the blood is unclotted. Here's how they actually describe it:
I'm not sure what "distinctive nutritional requirements" the product resolves, but for all I know, it may be the greatest product since sliced bread. However, as you noted, it is not a bile acid sequestrant, nor is it even distantly related to cholestyramine, nor will it in any way function similar to cholestyramine. Your doctor can call it "natural" if she wants, but it is a very highly-processed product, so calling it "natural" requires a stretch of the imagination. The only natural thing about it is that it's made from a natural product, namely cow's blood. The processing of course is very unnatural.
If you're not sensitive to beef, it shouldn't cause any adverse reactions, but I would be surprised if it provides any magical curative properties. At any rate, if you have a bile acid malabsorption problem, that product will definitely not address it.
I agree with you — your doctor kind of sold you a bill of goods there, and in the process she proved that many drug company reps are great at their jobs. But who knows? There's always a chance that it might help in some way.
Personally, I prefer to get my beef protein by eating beef steak. Old timers here in the South will point out that beef blood makes good feedstock for making stinkbait to be used for catching catfish (which are also a preferred source of protein).
It's good to see you posting. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I had never heard of that product before either, so I had to look it up. Apparently their sales rep did a good job with your PCP.
Their website appears to be mostly a collection of smoke and mirrors designed to make the product appear to be terrific without actually revealing what it is made from. But if you wade through the "Medical Professional" information, you can see that basically the product is nothing but a beef protein supplement. Their description of it as a "medical food" makes it appear more sophisticated than that of course, but basically, as far as I can tell, it's nothing more than a beef protein supplement made from the lymphocytes and other glycoproteins (immunoglobulins) found in the plasma of cow's blood. Immunoglobulins function as antibodies or receptors in immune system responses. They apparently use fresh blood, because after clotting, the serum no longer contains lymphocytes (or platelets) as plasma does, so they couldn't legitimately call it "serum-derived" unless the blood is unclotted. Here's how they actually describe it:
http://enteragam.com/EnteraGam® (serum-derived bovine immunoglobulin/protein isolate, SBI) is a prescription medical food product intended to provide for distinctive nutritional requirements that are unique for the clinical dietary management of specific intestinal disorders [e.g., in irritable bowel syndrome with diarrhea (IBS-D), inflammatory bowel disease (IBD), and HIV-associated enteropathy]. EnteraGam®, as a medical food, must be used under physician supervision.
I'm not sure what "distinctive nutritional requirements" the product resolves, but for all I know, it may be the greatest product since sliced bread. However, as you noted, it is not a bile acid sequestrant, nor is it even distantly related to cholestyramine, nor will it in any way function similar to cholestyramine. Your doctor can call it "natural" if she wants, but it is a very highly-processed product, so calling it "natural" requires a stretch of the imagination. The only natural thing about it is that it's made from a natural product, namely cow's blood. The processing of course is very unnatural.
If you're not sensitive to beef, it shouldn't cause any adverse reactions, but I would be surprised if it provides any magical curative properties. At any rate, if you have a bile acid malabsorption problem, that product will definitely not address it.
I agree with you — your doctor kind of sold you a bill of goods there, and in the process she proved that many drug company reps are great at their jobs. But who knows? There's always a chance that it might help in some way.
Personally, I prefer to get my beef protein by eating beef steak. Old timers here in the South will point out that beef blood makes good feedstock for making stinkbait to be used for catching catfish (which are also a preferred source of protein).
It's good to see you posting. 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
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- Location: Hunter Valley NSW Australia
Mary!
welcome and glad you posted.
I have used beef colostrum, it had limited scope of success. (that was back in 2011). Since then I have learnt alot about 'improving wellness', gut health, and healing. long story short what I have learnt is;
firstly colostrum has limited scope of benefit because it does not deal with biofilm bacteria/parasites and
secondly, the bodies ability to clear toxins and heal is reliant on a multitude of nutrients and the methylation cycle. No single product can achieve that.
hope this helps.
welcome and glad you posted.
I have used beef colostrum, it had limited scope of success. (that was back in 2011). Since then I have learnt alot about 'improving wellness', gut health, and healing. long story short what I have learnt is;
firstly colostrum has limited scope of benefit because it does not deal with biofilm bacteria/parasites and
secondly, the bodies ability to clear toxins and heal is reliant on a multitude of nutrients and the methylation cycle. No single product can achieve that.
hope this helps.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes and Tex,
Many thanks for the warm welcome. Your responses have me smiling.
Gabes, it's good to know that you've tried beef colostrum without success. You've put my jumbled thoughts into words: MC is a complex disease that requires a more nuanced treatment than a catch-all drug meant for IBS or IBD.
Tex, thank you for taking the time to research Enteragram and provide your analysis. Yes, I agree that catfish may be an acceptable alternative
As a mother of two teenagers I often find myself wondering, "Why don't they just do what I ask them to do?", and now I feel I can apply similar logic to my PCP She does not have the insight or experience with the disease that either of you have had, and I guess that shows in her suggestions for treatment. I really don't blame her. I do believe that you have to live with this disease to have a real understanding for it.
Fortunately (or unfortunately), I do have a sensitivity to beef, and so I'll be heading back to her office in the hopes that I'll walk away with a prescription I can feel optimistic about this time. Second-guessing my doctor was something I never would have dreamed of doing before MC came along...but I guess this disease changes us in many unexpected ways. I'll keep you posted on my progress.
Mary
Many thanks for the warm welcome. Your responses have me smiling.
Gabes, it's good to know that you've tried beef colostrum without success. You've put my jumbled thoughts into words: MC is a complex disease that requires a more nuanced treatment than a catch-all drug meant for IBS or IBD.
Tex, thank you for taking the time to research Enteragram and provide your analysis. Yes, I agree that catfish may be an acceptable alternative
As a mother of two teenagers I often find myself wondering, "Why don't they just do what I ask them to do?", and now I feel I can apply similar logic to my PCP She does not have the insight or experience with the disease that either of you have had, and I guess that shows in her suggestions for treatment. I really don't blame her. I do believe that you have to live with this disease to have a real understanding for it.
Fortunately (or unfortunately), I do have a sensitivity to beef, and so I'll be heading back to her office in the hopes that I'll walk away with a prescription I can feel optimistic about this time. Second-guessing my doctor was something I never would have dreamed of doing before MC came along...but I guess this disease changes us in many unexpected ways. I'll keep you posted on my progress.
Mary
Mary,
If your doctor should doubt that a sensitivity to beef would be a problem, you can point out to her that their website even specifically warns about that possibility:
Good luck with getting the prescription you want.
You're very welcome,
Tex
If your doctor should doubt that a sensitivity to beef would be a problem, you can point out to her that their website even specifically warns about that possibility:
Yes, you're right that the disease can have some unexpected effects on us. It can literally destroy our self-confidence while at the same time forcing us to recognize that if we are ever going to get our life back we have to take responsibility for our own health.EnteraGam® contains beef protein; therefore, patients who have an allergy to beef or any component of EnteraGam® should not take this product.
Good luck with getting the prescription you want.
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.
Hello all,
Just writing to report on my progress with cholestyramine.
I did finally receive the prescription from my PCP (never did take the Enteragam), and I've been ingesting one packet daily for the last two weeks. Week one: great results. Some norms even, and while on paper things looked similar to past weeks and months (lots of 7's and 6's), my feeling was that things were changing in the right direction. Frequency and urgency were way down. It was nice to feel a calm, flat stomach. Week 2: things have fallen off a bit. I've experienced some bloating and nausea. No 4's or 5's. Tried reducing the dosage for fear of constipation, but I don't think that's my problem.
Maybe I'm still adjusting? Detoxifying? Also, I know my magnesium levels could be better. I still apply topically since the ReMag just seems to go right through me. I will work on trying a smaller dose of the ReMag.
One big change -- my hair and skin have greatly improved. Almost overnight my hair is less dry and brittle. I see color in my face again. I'll take whatever cholestyramine wants to give me at the moment and stay the course with my fingers crossed.
Mary
Just writing to report on my progress with cholestyramine.
I did finally receive the prescription from my PCP (never did take the Enteragam), and I've been ingesting one packet daily for the last two weeks. Week one: great results. Some norms even, and while on paper things looked similar to past weeks and months (lots of 7's and 6's), my feeling was that things were changing in the right direction. Frequency and urgency were way down. It was nice to feel a calm, flat stomach. Week 2: things have fallen off a bit. I've experienced some bloating and nausea. No 4's or 5's. Tried reducing the dosage for fear of constipation, but I don't think that's my problem.
Maybe I'm still adjusting? Detoxifying? Also, I know my magnesium levels could be better. I still apply topically since the ReMag just seems to go right through me. I will work on trying a smaller dose of the ReMag.
One big change -- my hair and skin have greatly improved. Almost overnight my hair is less dry and brittle. I see color in my face again. I'll take whatever cholestyramine wants to give me at the moment and stay the course with my fingers crossed.
Mary
Mary,
Sometimes it takes a while for improvements to show up because the digestive system has to reach a new equilibrium. And sometimes we have symptoms for no obvious reason, often because healing tends to take much longer than we expect.
The only time in my life when I had brittle nails was when my magnesium deficiency became severe. And I also noticed that as my magnesium levels improved, not only did my nails become much tougher again, but my hair also improved. But it took a while because it takes time for nails and hair to regrow.
By contrast, cholestyramine depletes magnesium levels (along with virtually all other vitamins and minerals). If it works though, it may be worth it.
Thanks for the update.
Tex
Sometimes it takes a while for improvements to show up because the digestive system has to reach a new equilibrium. And sometimes we have symptoms for no obvious reason, often because healing tends to take much longer than we expect.
The only time in my life when I had brittle nails was when my magnesium deficiency became severe. And I also noticed that as my magnesium levels improved, not only did my nails become much tougher again, but my hair also improved. But it took a while because it takes time for nails and hair to regrow.
By contrast, cholestyramine depletes magnesium levels (along with virtually all other vitamins and minerals). If it works though, it may be worth it.
Thanks for the update.
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.