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Hello,
I have a few questions to address to the collective wisdom of the group.
(1) I went on a gluten-free diet recently, following a diagnosis of MC. I noticed that several packaged foods list "traces of gluten" on their labels. Is the gluten intolerance in MC such that we must avoid these foods as well?
(2) Several sites have mentioned the beneficial effects of Pepto-Bismol. As luck would have it, I am allergic to aspirin. The active ingredient in P-B is bismuth subsalicylate, and it is the subsalicylate compound to which I am allergic (the same as the salicylic acid in aspirin). I was told, however, that there are other bismuth compounds, notably bismuth subnitrate, which I could most likely take. The only med I found containing bismuth subnitrate is a very old brand called Percy Medicine, which I don't think is manufactured anymore. Has anyone had any experience with other bismuth compounds?
(3) A GI prescribed a med named Creon, containing pancreatin, on the assumption that I may have a deficiency of this enzyme. After taking two pills I had a very bad episode (possibly not caused by it -- it was before I went G-free), so a stopped taking it. Has anyone had any experience with pancreatin?
(4) Somebody recommended an additive called Konsyl (refined psyllium+aspartam), which is in fact a laxative if taken, as prescribed, diluted in a lot of water. But the person who recommended it said that as the powder is hydrophilic, if it is taken as a paste, with little water, it acts as an anti-diarrhetic (absorbing water from the intestine). This makes sense, but no such use is mentioned in the information sheet that comes with the stuff. Has anyone had any experience with this type of substance?
Thank you very much for your help.
Gabriel
A few questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Gabriel, welcome here, great to see a flag from another totally different part of the world. I can only answer your question number 1, yes, if you go gluten free it is only useful if you do it 100%, same as with celiac disease. However occasionally I buy a chocolate bar and on the back is written something like "could possible contain traces of milk, soy, nuts". Those things I do eat, if it says "does contain traces of gluten", I avoid it, if it says "could possible contain traces of gluten" I sometimes take the risk. Most of the time it is the risk of cross contamination.
I hope others will be able help you with your other questions.
harma
I hope others will be able help you with your other questions.
harma
Thank you for your prompt answer, Harma.
Can I ask you to clarify one more thing? Suppose the label says "could possibly contain..." and you take the risk, and it turns out that it did contain some traces. What is the consequence for you? Are you back to square 1, with an immediate eruption? Or does the presumably small amount of gluten produce a relatively small reaction? Or is it entirely unpredictable?
Thank you,
Gabriel
Can I ask you to clarify one more thing? Suppose the label says "could possibly contain..." and you take the risk, and it turns out that it did contain some traces. What is the consequence for you? Are you back to square 1, with an immediate eruption? Or does the presumably small amount of gluten produce a relatively small reaction? Or is it entirely unpredictable?
Thank you,
Gabriel
Hi Gabriel,
Welcome aboard - I hope you can find the answers that you seek, here.
To answer your question about the consequences of ingesting trace amounts of gluten - this tends to vary, depending on one's sensitivity, and individual response threshold, and it depends on where you are in your recovery cycle, also. Though most of us are just as sensitive to gluten as the average celiac, some can handle trace amounts without an immediate reaction, while others may have to run to the bathroom in 10 minutes or less, after eating it. If someone has been having a major flare, and has just recently been able to achieve remission, then accidentally eating some gluten may cause anything from a few days of symptoms, to "back to square one", depending on the individual. However, for those of us who have been in remission for a few months or more, so that our intestines have had a chance to do some serious healing, the accidental ingestion of gluten may only result in a one-day setback. After we have been in remission for several years, if we accidentally eat a little gluten, it may only cause one trip to the bathroom, or possibly just a little gas and discomfort. For others, though it may be more significant, but usually not nearly as bad as it was before remission was achieved. Of course, if we continue to eat gluten, then we will relapse, but a minor incident is usually not a big deal, once we have been in remission for a while.
I'm not aware of any member here who has tried any bismuth compound other than bismuth subsalicylate, and a fair number of members have reacted adversely to Pepto-Bismol, though some have benefited, of course, from the 8-week "Pepto Treatment". Any NSAIDs are off limits to anyone with MC, because NSAIDS can actually trigger MC, and a number of members here can trace their MC back to the use of NSAIDS, prior to the initiation of their disease.
Regarding enzymes, though MC often causes incomplete digestion, very few of us have ever derived any significant benefits from enzyme supplements, and several of us have reacted adversely to them, including myself. Your enzyme production will return to normal, when your gut begins to heal.
It is true that psyllium is not really a true laxative, and it might help in some cases of minor diarrhea, (such as diarrhea-based IBS), but fiber is contraindicated for MC, because it tends to cause additional irritation in intestines that are already inflamed, because of MC. Because of that, most of us have to severely limit our fiber intake, lest it prolong a flare, or even provoke a new one, for someone who is newly in remission. As you probably know, psyllium passes through the small intestine intact, and when it reaches the colon, it is "digested" by fermentation. This typically causes gas, bloating, and pain, for someone with MC. Additionally, psyllium is a prebiotic, (it provides food for bacteria in the colon, as it is broken down). Unfortunately, that makes many of us worse, because MC is often connected with an intestinal bacterial imbalance, (due to digestion issues), and a prebiotic will often cause the "bad" bacteria to reproduce faster than the "good" bacteria, which can make the imbalance worse, and cause even more digestive problems. While there are a few exceptions, the vast majority of us have not been able to benefit from either probiotics or prebiotics, despite advertising claims to the contrary. It is advisable, though, to take a probiotic for a few weeks or so, anytime you have to take an antibiotic, otherwise there is a significant risk of a serious bacterial overgrowth, particularly C. diff.
Again, welcome aboard, and please feel free to ask any questions that come to mind. No one truly understands MC, unless they have it, but on this board, we all definitely understand what you're dealing with, because we've either been there, or we're there now.
Tex (Wayne)
Welcome aboard - I hope you can find the answers that you seek, here.
To answer your question about the consequences of ingesting trace amounts of gluten - this tends to vary, depending on one's sensitivity, and individual response threshold, and it depends on where you are in your recovery cycle, also. Though most of us are just as sensitive to gluten as the average celiac, some can handle trace amounts without an immediate reaction, while others may have to run to the bathroom in 10 minutes or less, after eating it. If someone has been having a major flare, and has just recently been able to achieve remission, then accidentally eating some gluten may cause anything from a few days of symptoms, to "back to square one", depending on the individual. However, for those of us who have been in remission for a few months or more, so that our intestines have had a chance to do some serious healing, the accidental ingestion of gluten may only result in a one-day setback. After we have been in remission for several years, if we accidentally eat a little gluten, it may only cause one trip to the bathroom, or possibly just a little gas and discomfort. For others, though it may be more significant, but usually not nearly as bad as it was before remission was achieved. Of course, if we continue to eat gluten, then we will relapse, but a minor incident is usually not a big deal, once we have been in remission for a while.
I'm not aware of any member here who has tried any bismuth compound other than bismuth subsalicylate, and a fair number of members have reacted adversely to Pepto-Bismol, though some have benefited, of course, from the 8-week "Pepto Treatment". Any NSAIDs are off limits to anyone with MC, because NSAIDS can actually trigger MC, and a number of members here can trace their MC back to the use of NSAIDS, prior to the initiation of their disease.
Regarding enzymes, though MC often causes incomplete digestion, very few of us have ever derived any significant benefits from enzyme supplements, and several of us have reacted adversely to them, including myself. Your enzyme production will return to normal, when your gut begins to heal.
It is true that psyllium is not really a true laxative, and it might help in some cases of minor diarrhea, (such as diarrhea-based IBS), but fiber is contraindicated for MC, because it tends to cause additional irritation in intestines that are already inflamed, because of MC. Because of that, most of us have to severely limit our fiber intake, lest it prolong a flare, or even provoke a new one, for someone who is newly in remission. As you probably know, psyllium passes through the small intestine intact, and when it reaches the colon, it is "digested" by fermentation. This typically causes gas, bloating, and pain, for someone with MC. Additionally, psyllium is a prebiotic, (it provides food for bacteria in the colon, as it is broken down). Unfortunately, that makes many of us worse, because MC is often connected with an intestinal bacterial imbalance, (due to digestion issues), and a prebiotic will often cause the "bad" bacteria to reproduce faster than the "good" bacteria, which can make the imbalance worse, and cause even more digestive problems. While there are a few exceptions, the vast majority of us have not been able to benefit from either probiotics or prebiotics, despite advertising claims to the contrary. It is advisable, though, to take a probiotic for a few weeks or so, anytime you have to take an antibiotic, otherwise there is a significant risk of a serious bacterial overgrowth, particularly C. diff.
Again, welcome aboard, and please feel free to ask any questions that come to mind. No one truly understands MC, unless they have it, but on this board, we all definitely understand what you're dealing with, because we've either been there, or we're there now.
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.
Dear Wayne,
Thank you for the thoughtful reply. I'm in awe of the competence and the quality of the writing...
Regarding the gluten: if we must avoid traces, and given that we are talking parts per million, does this mean that I need to use a separate set of dishes? And do I have to wash hands after, say, preparing a sandwich for my son? Or would I be better off not touching bread at all?
One other question: I have had persistent bitter taste in my mouth, which after some research I think I can attribute to bile acid malabsorption (although I cannot tell whether this is a cause of MC or an effect). I saw that Cholestyramine is one of the medications used to treat MC in order to help absorb the excess bile acid. Has anyone had any experience with this medicine?
Thank you again,
Gabriel
Thank you for the thoughtful reply. I'm in awe of the competence and the quality of the writing...
Regarding the gluten: if we must avoid traces, and given that we are talking parts per million, does this mean that I need to use a separate set of dishes? And do I have to wash hands after, say, preparing a sandwich for my son? Or would I be better off not touching bread at all?
One other question: I have had persistent bitter taste in my mouth, which after some research I think I can attribute to bile acid malabsorption (although I cannot tell whether this is a cause of MC or an effect). I saw that Cholestyramine is one of the medications used to treat MC in order to help absorb the excess bile acid. Has anyone had any experience with this medicine?
Thank you again,
Gabriel
Of course, we're all different, and have different thresholds, but Dr. Fasano, (University of Maryland Center for Celiac Research), completed a research project several years ago, which prompted the The Codex Alimentarius to change the official gluten-free product limit from 200 parts per million, (ppm), to 20 ppm. Prior to Dr. Fasano's research, "expert opinion" claimed that foods with less than 200 ppm of gluten, were safe for celiacs, but Dr. Fasano demonstrated that many celiacs react at the 200 ppm level, and a significant percentage of celiacs react to 50 ppm, (and, of course, a few are even more sensitive than that). Anyway, after this landmark research, the Codex standard was changed to 20 ppm, in order to qualify for a GF label.
Codex Alimentarius is a Geneva-based International organization jointly run by the World Health Organization, (WHO), and the Food and Agriculture Organization of the United Nations, (FAO) , and they set the gluten-free standard for European food manufacturers. Their aim, of course, is to establish worldwide standards for foods, and most of the world now follows the 20 ppm standard. It seems ironic that a gluten-free label does not actually mean gluten-free, but that's the way things work, when committees and governments set standards.
Anyway, the point is, there are a few of us for whom food with a gluten-free label is not necessarily safe, but for probably more than 99% of us, that standard is adequate. Bear in mind that this is dose-dependent, and if you eat enough food with a 20 ppm level of gluten, the cumulative effect may be enough to cause a reaction, whereas eating only a single serving probably wouldn't be a problem. That suggests that the least amount of processed foods we eat, the better off we are. Tests are usually done, where test subjects eat what are considered to be "normal" amounts, (which, unfortunately, might be manufacturers suggested serving sizes, which are always smaller than the amounts that normal people actually eat - this allows the serving-size calorie count to look better, IOW, lower).
With that in mind, a dedicated GF set of dishes is not absolutely necessary, but it can certainly make life easier, especially for things such as containers used for baking, and pots and pans that might have cracks or seams where gluten particles might hide. Baking is notorious for leaving small "baked-on" deposits that dishwashers sometimes miss. It is definitely a good idea to either wear plastic gloves while handling products that contain gluten, or wash your hands afterward. Unfortunately, for some of us, a tiny crumb can trigger a reaction. Some households simply convert to all GF, to remove the risk of cross-contamination. Whether or not that is practical, depends on the local availability of good GF substitutes for popular foods, such as bread, pizza crusts, pastas, etc. Such GF foods exist, but they are not easy to find in many locations. Some brands of GF bread, for example, are best used as doorstops. Recently, though, some very good products have come to market, but I have no idea if they might be available in your part of the world, yet.
This might not apply to you, of course, but a bitter taste in the mouth is most often attributed to GERD, and GERD is a common problem with MC. Quite a few members here feel that their MC was triggered by their long-term use of a proton pump inhibitor, (PPI), that their doctor prescribed for acid reflux, or GERD. Many doctors prescribe an antacid, or a PPI, to treat acid reflux, when the actual cause of the reflux problem is inadequate acid, (rather than too much acid). Very, very few people produce too much stomach acid, but many, many people have been prescribed PPIs. When too little gastric acid is being produced, a PPI seems to help at first, but then the reflux problem continues, or becomes worse. The "Catch-22" with the PPIs, is that they actually cause changes in the body which lead to increased acid production, (to compensate for the PPI's effect), so that they cause the body to relatively quickly become "addicted" to them. IOW, if a patient tries to withdraw from them, the symptoms become much worse, so the patient is "hooked". In trials, perfectly healthy volunteers found that after only a couple of months of using a PPI, they developed GERD symptoms, if they tried to withdraw.
It seems to me that doctors prescribing PPIs have a major iatrogenic issue, that may come home to roost, one of these days, especially since the PPIs have been proven to cause MC.
http://www.webmd.com/heartburn-gerd/new ... x-symptoms
Doctors often suspect bile acid malabsorption, (especially for patients whose gallbladder has been removed, which is another problem often connected with MC), and they frequently prescribe cholestyramine to MC patients, (because one of the side effects of cholestyramine is constipation), but of the many members here who have tried taking it, I honestly can't recall anyone reporting that it actually helped, even the members whose gallbladder had been removed. The reason why it doesn't work, (or rarely works, at an rate, IMO), is because it does nothing to address the inflammation that is causing the D in the first place. It sometimes works with IBS-type symptoms, because no inflammation exists in those cases. Many doctors confuse MC with IBS, or they assume that what works for IBS, will work for MC. It won't.
It's true that bile acid malabsorption can exist with MC, but that's primarily because a major malabsorption problem exists for fats, and any nutrients/chemicals connected with fat-solubility, (especially the B vitamins), during an MC flare. In a normal human digestive system, about 20-30 grams of bile acids are secreted into the small intestine daily, at the proximal end of the duodenum, (IOW, the upper end of the small intestine), and about 90% of them are reabsorbed in the ileum, (the lower third of the small intestine), and recycled back to the liver and the gallbladder. Since the small intestine is usually involved with MC reactions also, (contrary to the medical description of the disease), most, (but not all), of us have a malabsorption issue. Normally, some bile is excreted with the stool, but normal transit time allows chemical changes which change the color of the stool from green to brown. However, when diarrhea is present, (which causes rapid transit), if you are having a really severe problem with malabsorption of bile acids, your stool should be quite green. If it's not, then you probably aren't severely malabsorbing bile. As I mentioned above, though, I don't recall anyone here reporting any significant benefits from taking cholestramine, regardless of their situation. We're all different, though, so it's not impossible that you might derive some benefits from it. We do a lot of experimenting here, and we share the results, so that we all learn from each other's experiences. So if you try it, please let us know how it works.
You're most welcome,
Wayne
Codex Alimentarius is a Geneva-based International organization jointly run by the World Health Organization, (WHO), and the Food and Agriculture Organization of the United Nations, (FAO) , and they set the gluten-free standard for European food manufacturers. Their aim, of course, is to establish worldwide standards for foods, and most of the world now follows the 20 ppm standard. It seems ironic that a gluten-free label does not actually mean gluten-free, but that's the way things work, when committees and governments set standards.
Anyway, the point is, there are a few of us for whom food with a gluten-free label is not necessarily safe, but for probably more than 99% of us, that standard is adequate. Bear in mind that this is dose-dependent, and if you eat enough food with a 20 ppm level of gluten, the cumulative effect may be enough to cause a reaction, whereas eating only a single serving probably wouldn't be a problem. That suggests that the least amount of processed foods we eat, the better off we are. Tests are usually done, where test subjects eat what are considered to be "normal" amounts, (which, unfortunately, might be manufacturers suggested serving sizes, which are always smaller than the amounts that normal people actually eat - this allows the serving-size calorie count to look better, IOW, lower).
With that in mind, a dedicated GF set of dishes is not absolutely necessary, but it can certainly make life easier, especially for things such as containers used for baking, and pots and pans that might have cracks or seams where gluten particles might hide. Baking is notorious for leaving small "baked-on" deposits that dishwashers sometimes miss. It is definitely a good idea to either wear plastic gloves while handling products that contain gluten, or wash your hands afterward. Unfortunately, for some of us, a tiny crumb can trigger a reaction. Some households simply convert to all GF, to remove the risk of cross-contamination. Whether or not that is practical, depends on the local availability of good GF substitutes for popular foods, such as bread, pizza crusts, pastas, etc. Such GF foods exist, but they are not easy to find in many locations. Some brands of GF bread, for example, are best used as doorstops. Recently, though, some very good products have come to market, but I have no idea if they might be available in your part of the world, yet.
This might not apply to you, of course, but a bitter taste in the mouth is most often attributed to GERD, and GERD is a common problem with MC. Quite a few members here feel that their MC was triggered by their long-term use of a proton pump inhibitor, (PPI), that their doctor prescribed for acid reflux, or GERD. Many doctors prescribe an antacid, or a PPI, to treat acid reflux, when the actual cause of the reflux problem is inadequate acid, (rather than too much acid). Very, very few people produce too much stomach acid, but many, many people have been prescribed PPIs. When too little gastric acid is being produced, a PPI seems to help at first, but then the reflux problem continues, or becomes worse. The "Catch-22" with the PPIs, is that they actually cause changes in the body which lead to increased acid production, (to compensate for the PPI's effect), so that they cause the body to relatively quickly become "addicted" to them. IOW, if a patient tries to withdraw from them, the symptoms become much worse, so the patient is "hooked". In trials, perfectly healthy volunteers found that after only a couple of months of using a PPI, they developed GERD symptoms, if they tried to withdraw.
IOW, if you actually have an excess acid production problem, then the PPIs apparently make that problem worse, (unless you faithfully take a PPI every day, for the rest of your life), and if you don't have an excess acid production problem, you soon will have, after taking a PPI for a couple of months.Healthy adults in the study with no history of acid reflux symptoms -- such as chronic heartburn, indigestion, or acid regurgitation -- developed such symptoms when they stopped taking the drugs after eight weeks of treatment.
The findings provide the best evidence yet that withdrawal from acid-blocking proton pump inhibitor (PPI) therapy is associated with a clinically meaningful increase in acid production above pre-treatment levels, researchers say.
It seems to me that doctors prescribing PPIs have a major iatrogenic issue, that may come home to roost, one of these days, especially since the PPIs have been proven to cause MC.http://www.webmd.com/heartburn-gerd/new ... x-symptoms
Doctors often suspect bile acid malabsorption, (especially for patients whose gallbladder has been removed, which is another problem often connected with MC), and they frequently prescribe cholestyramine to MC patients, (because one of the side effects of cholestyramine is constipation), but of the many members here who have tried taking it, I honestly can't recall anyone reporting that it actually helped, even the members whose gallbladder had been removed. The reason why it doesn't work, (or rarely works, at an rate, IMO), is because it does nothing to address the inflammation that is causing the D in the first place. It sometimes works with IBS-type symptoms, because no inflammation exists in those cases. Many doctors confuse MC with IBS, or they assume that what works for IBS, will work for MC.
It won't.It's true that bile acid malabsorption can exist with MC, but that's primarily because a major malabsorption problem exists for fats, and any nutrients/chemicals connected with fat-solubility, (especially the B vitamins), during an MC flare. In a normal human digestive system, about 20-30 grams of bile acids are secreted into the small intestine daily, at the proximal end of the duodenum, (IOW, the upper end of the small intestine), and about 90% of them are reabsorbed in the ileum, (the lower third of the small intestine), and recycled back to the liver and the gallbladder. Since the small intestine is usually involved with MC reactions also, (contrary to the medical description of the disease), most, (but not all), of us have a malabsorption issue. Normally, some bile is excreted with the stool, but normal transit time allows chemical changes which change the color of the stool from green to brown. However, when diarrhea is present, (which causes rapid transit), if you are having a really severe problem with malabsorption of bile acids, your stool should be quite green. If it's not, then you probably aren't severely malabsorbing bile. As I mentioned above, though, I don't recall anyone here reporting any significant benefits from taking cholestramine, regardless of their situation. We're all different, though, so it's not impossible that you might derive some benefits from it. We do a lot of experimenting here, and we share the results, so that we all learn from each other's experiences. So if you try it, please let us know how it works.
You're most welcome,
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
G'day Gabriel
I was diagnosed with MC in Dec '09. my GI specialist prescribed Cholestyramine for me. I was having 8g per night
in my aim to manage the MC med free, after 2 months of 8g per night i started reducing the dosage and 6 weeks later i stopped taking it.
That was about 2 - 3 weeks ago. I have had a few too many flares in the past couple of weeks, and have started taking about 3g every second night.
be mindful, you can not have meds 4 hours before or 6 hours after having it. and drink lots of water.
I find if i have it about 9pm at night then i tend to do a 'semi normal' BM in the morning.
re the GLuten and cross contamination. I have wheat based products in the house for my partner, I have handled these with no issues, i do wash my hands very thoroughly after handling them. and we have had no issues with plates etc.
good luck with figuring out what works for you.
take care
I was diagnosed with MC in Dec '09. my GI specialist prescribed Cholestyramine for me. I was having 8g per night
in my aim to manage the MC med free, after 2 months of 8g per night i started reducing the dosage and 6 weeks later i stopped taking it.
That was about 2 - 3 weeks ago. I have had a few too many flares in the past couple of weeks, and have started taking about 3g every second night.
be mindful, you can not have meds 4 hours before or 6 hours after having it. and drink lots of water.
I find if i have it about 9pm at night then i tend to do a 'semi normal' BM in the morning.
re the GLuten and cross contamination. I have wheat based products in the house for my partner, I have handled these with no issues, i do wash my hands very thoroughly after handling them. and we have had no issues with plates etc.
good luck with figuring out what works for you.
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama