KD,
You will find a wealth of info in what everyone here has to offer, you will also find enough information to fill a library by searching through some of the older posts. I wish you well on your journey to good health, your allready ahead of the game now that you found this place.
Best wishes, Dan
I am brand new to Microscopic colitis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
artteacher
- Rockhopper Penguin
- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
.
Hi Pat, I was wondering if it was almonds, or the skin on the almonds, that makes you sick. When I read the Gottschell book "the Specific Carbohydrate Diet", she mentioned that all nuts are irritating, but that it's mostly the fiber in the skin. When I soak them overnight, and peel off the skin before eating, I don't have a problem.
Just thought I'd ask . .
Marsha
Just thought I'd ask . .
Marsha
Marsha,
There is no skin in almond flour and that it when I really figured out that it was almonds. I have used almond milk before and noticed my stomach hurt some afterward but I thought it was something else in it. I was eating so many other things and having daily constant D that eating a few almonds with skin just fit in with everything else. My diet is so limited now that I think that is how I can pick up things like this. Now I am being suspicious of something I am eating in the morning. The D is liquid several hours afterward and then in the evening and first thing in the morning is thicker and more together. Whether it is food or vitamins I don't know yet. Since food can't go vitamins are going for a few days and see what happens if anything. All trial and error. Thanks for thinking of me.
Pat
There is no skin in almond flour and that it when I really figured out that it was almonds. I have used almond milk before and noticed my stomach hurt some afterward but I thought it was something else in it. I was eating so many other things and having daily constant D that eating a few almonds with skin just fit in with everything else. My diet is so limited now that I think that is how I can pick up things like this. Now I am being suspicious of something I am eating in the morning. The D is liquid several hours afterward and then in the evening and first thing in the morning is thicker and more together. Whether it is food or vitamins I don't know yet. Since food can't go vitamins are going for a few days and see what happens if anything. All trial and error. Thanks for thinking of me.
Pat
Hi there,
Think that almond milk has one of the common sensitivities to MC'rs, but not exactly sure which one it has -- is it dairy, gang? That would make sense of the reaction you are having to that, but not the almond flour, so I'd still be suspicious of almonds, at least until you are obviously much improved.
I heard Dr. Fine at a lecture in Dallas a few years ago. He's on a VERY limited diet -- mostly nuts and seeds for protein and lots of green leafy vegetables (his gut is healed, so he can eat that kind of stuff now).
Anyway, he said that he discovered that when he eliminated flax, that he didn't get the slight back aches that he'd gotten before, similar to the ones he'd had while still ingesting gluten. He'd apparently been eating lots of flax prior to this discovery.
Further, he added that any of the nuts or seeds could be problematic for any individual, and advocated just figuring out which ones bother you by elimination, once you are off the more common sensitivities with this stuff, and still having a problem, no matter how subtle.
Many on this board have been able to reintroduce things that formerly bothered us the same day as we ate them, but later, were able to reintroduce them when our guts had healed a bit.
Alot depends on one's transit time, or the time it takes the food we're sensitive to to get through the gut. In my case, were I to eat gluten, dairy, soy, eggs, or dietary yeast, I would have diarrhea almost exactly 24 hours later (generally after the same meal -- i.e., lunch the next day if I'd ingested it at lunch the prior day). Transit time is very individual depending on alot of things, but age tends to make the transit time a little longer, I think.
Neat thing about figuring out this transit time is that once you've established a consistent diet, you tend to not introduce new products all that often, so if one day, you decide to eat something different that you THINK is free of a sensitivity, then, you note the time of a reaction later, and count backwards for your transit time, and then, you know which food or restaurant was probably the culprit. Pretty neat, huh?
It's also much easier to figure out the transit time once you are sure you're being absolutely strict as it makes a definite difference in your symptoms.
One thing to note about a dairy reaction is that most of us, at least at first, are also intolerant of lactose, the sugar found in dairy, that requires an enzyme that many of us can't produce while our guts are not fully healed.
Soooo...whenever we eat dairy, we will often note a reaction fairly soon after the ingestion, say within a couple of hours, followed by a casein reaction (if we have a true casein sensitivity and not just an inability to tolerate lactose) which doesn't occur for a much longer time -- the transit time.
This is what makes trying to figure all this out by elimination so much more difficult than doing it with the stool tests, but it can be done. For me, each time I eliminated one thing, the reactions became much less, eventually, making it fairly obvious that I had a problem with eggs as I only ate them twice a week, and had reactions both times the day after. Soy was much more subtle by then, but it was noticeable.
What I did was to start the gluten elimination first, and after feeling a whooole lot better, sent the specimen in to Enterolab. Since the casein was included with that test, I went ahead and eliminated dairy immediately after setting that specimen on the doorstep for pickup. That turned out positive as my elimination of dairy caused me to realize it would. Anyway, I did that with the next specimen for eggs and yeast, and figured out I was positive before the results were even back once again. Soy was highly suspect, so when the test was finally made available, I verified my suspicions, and was positive on that as well.
Think the effects of some of this is very cumulative as things really began to slow down once I got off gluten and dairy since they were everyday food staples for me. It really gets difficult to figure all this out when one eats a food several times a day every day and has diarrhea every day all day.
Many of the foods that people say are triggers for their diarrhea immediately -- spicy or greasy foods, for example, I call secondary triggers, as once the primary triggers or food sensitivities are eliminated for long enough, these often no longer cause any problems whatsoever. The primary or food sensitivities are the real culprit.
Another thing that is interesting about gluten is that it is not only an antigen for the immune reaction itself, but it is also one of a long list of things that is known to cause the gut to become more permeable to undigested proteins which is a problem in people with these delayed food allergies, M.C., celiac disease, and many other autoimmune diseases. This is why at least SOME benefit is often noted from the gluten free diet in reduction of symptoms in people with diverse other kinds of autoimmune conditions.
If you've not already done so, check out the Enterolab site for Dr. Fine's article that includes the words, "Until the vili are flat" or something similar to that.
Also, you may find information about a substance called zonulin interesting as it controls the permeability of the gut. Research is being done now on a zonulin blocker in hopes of being able to reduce the permeability of the gut so that, say, teenagers who want to eat out with friends, will be able to take this blocker, and hopefully, prevent the ingestion of the gliadin protein, and thus, prevent the typical reaction to gluten that celiacs and other gluten sensitive people have. The doc doing this research is also Italian, by the way. He's the one who did the famous Prevalence Study on Celiac Disease that brought to light how common it really is in the USA.
I had everything from migraines to tightness everywhere in my body to bone and joint and no telling where pains, other neurological issues, eventually swelling feet, etc., not to mention all the gut symptoms. Think I had a longer list of symptoms than anyone I've met here thus far, but I responded faster, in terms of pain relief early on by elimination of gluten than many others, particulary noticeable, the pain elimination that came so quickly.
Don't forget to have the appropriate vitamin levels checked related to fat soluble vitamins as well as water soluble. If only your colon is damaged, the fat soluble may not be a problem, but as it turns out, even those with M.C. who don't have any obvious small bowel damage can have low levels of fat soluble vitamins, despite even small biopsy slides being negative for small bowel damage when celiac disease is checked for the traditional way. If you have obvious fat in your stools (including floating), then you really need to check the fat soluble ones, but I would do that regardless.
Oh, and for your B-12, be sure your level stays above 400, even though the lower end of the lab ref range may state 200 is the low for normal as many people have neuro symptoms between 200 and 400. They really need to bring that lower end up to 400 at the lowest, but these things take time, it seems.
I had neuro symptoms, and was below 400 on the lab slip for B-12. Instead of having shots, I just took the sublingual B-12 put out by Biochem, and was able to easily get my B-12 level up right in the middle of the normal range, and reduce my obvious symptoms from not absorbing enough B-12.
Be SURE to check your bones frequently. I wish I had as much success with my bones as everything else, but then, I'm awful at following the osteoporosis regime. People are weird, ya know that?!!! Ha!
Nice to meet you, and good luck with your endeavor to stop this beast.
I have been having perfectly normal stools now since 2004, with diet alone (see my sensitivities to the left of this message) and lovin' it! Many others eventually got there as well. Let's hope you will, and soon!
Yours, Luce
Think that almond milk has one of the common sensitivities to MC'rs, but not exactly sure which one it has -- is it dairy, gang? That would make sense of the reaction you are having to that, but not the almond flour, so I'd still be suspicious of almonds, at least until you are obviously much improved.
I heard Dr. Fine at a lecture in Dallas a few years ago. He's on a VERY limited diet -- mostly nuts and seeds for protein and lots of green leafy vegetables (his gut is healed, so he can eat that kind of stuff now).
Anyway, he said that he discovered that when he eliminated flax, that he didn't get the slight back aches that he'd gotten before, similar to the ones he'd had while still ingesting gluten. He'd apparently been eating lots of flax prior to this discovery.
Further, he added that any of the nuts or seeds could be problematic for any individual, and advocated just figuring out which ones bother you by elimination, once you are off the more common sensitivities with this stuff, and still having a problem, no matter how subtle.
Many on this board have been able to reintroduce things that formerly bothered us the same day as we ate them, but later, were able to reintroduce them when our guts had healed a bit.
Alot depends on one's transit time, or the time it takes the food we're sensitive to to get through the gut. In my case, were I to eat gluten, dairy, soy, eggs, or dietary yeast, I would have diarrhea almost exactly 24 hours later (generally after the same meal -- i.e., lunch the next day if I'd ingested it at lunch the prior day). Transit time is very individual depending on alot of things, but age tends to make the transit time a little longer, I think.
Neat thing about figuring out this transit time is that once you've established a consistent diet, you tend to not introduce new products all that often, so if one day, you decide to eat something different that you THINK is free of a sensitivity, then, you note the time of a reaction later, and count backwards for your transit time, and then, you know which food or restaurant was probably the culprit. Pretty neat, huh?
It's also much easier to figure out the transit time once you are sure you're being absolutely strict as it makes a definite difference in your symptoms.
One thing to note about a dairy reaction is that most of us, at least at first, are also intolerant of lactose, the sugar found in dairy, that requires an enzyme that many of us can't produce while our guts are not fully healed.
Soooo...whenever we eat dairy, we will often note a reaction fairly soon after the ingestion, say within a couple of hours, followed by a casein reaction (if we have a true casein sensitivity and not just an inability to tolerate lactose) which doesn't occur for a much longer time -- the transit time.
This is what makes trying to figure all this out by elimination so much more difficult than doing it with the stool tests, but it can be done. For me, each time I eliminated one thing, the reactions became much less, eventually, making it fairly obvious that I had a problem with eggs as I only ate them twice a week, and had reactions both times the day after. Soy was much more subtle by then, but it was noticeable.
What I did was to start the gluten elimination first, and after feeling a whooole lot better, sent the specimen in to Enterolab. Since the casein was included with that test, I went ahead and eliminated dairy immediately after setting that specimen on the doorstep for pickup. That turned out positive as my elimination of dairy caused me to realize it would. Anyway, I did that with the next specimen for eggs and yeast, and figured out I was positive before the results were even back once again. Soy was highly suspect, so when the test was finally made available, I verified my suspicions, and was positive on that as well.
Think the effects of some of this is very cumulative as things really began to slow down once I got off gluten and dairy since they were everyday food staples for me. It really gets difficult to figure all this out when one eats a food several times a day every day and has diarrhea every day all day.
Many of the foods that people say are triggers for their diarrhea immediately -- spicy or greasy foods, for example, I call secondary triggers, as once the primary triggers or food sensitivities are eliminated for long enough, these often no longer cause any problems whatsoever. The primary or food sensitivities are the real culprit.
Another thing that is interesting about gluten is that it is not only an antigen for the immune reaction itself, but it is also one of a long list of things that is known to cause the gut to become more permeable to undigested proteins which is a problem in people with these delayed food allergies, M.C., celiac disease, and many other autoimmune diseases. This is why at least SOME benefit is often noted from the gluten free diet in reduction of symptoms in people with diverse other kinds of autoimmune conditions.
If you've not already done so, check out the Enterolab site for Dr. Fine's article that includes the words, "Until the vili are flat" or something similar to that.
Also, you may find information about a substance called zonulin interesting as it controls the permeability of the gut. Research is being done now on a zonulin blocker in hopes of being able to reduce the permeability of the gut so that, say, teenagers who want to eat out with friends, will be able to take this blocker, and hopefully, prevent the ingestion of the gliadin protein, and thus, prevent the typical reaction to gluten that celiacs and other gluten sensitive people have. The doc doing this research is also Italian, by the way. He's the one who did the famous Prevalence Study on Celiac Disease that brought to light how common it really is in the USA.
I had everything from migraines to tightness everywhere in my body to bone and joint and no telling where pains, other neurological issues, eventually swelling feet, etc., not to mention all the gut symptoms. Think I had a longer list of symptoms than anyone I've met here thus far, but I responded faster, in terms of pain relief early on by elimination of gluten than many others, particulary noticeable, the pain elimination that came so quickly.
Don't forget to have the appropriate vitamin levels checked related to fat soluble vitamins as well as water soluble. If only your colon is damaged, the fat soluble may not be a problem, but as it turns out, even those with M.C. who don't have any obvious small bowel damage can have low levels of fat soluble vitamins, despite even small biopsy slides being negative for small bowel damage when celiac disease is checked for the traditional way. If you have obvious fat in your stools (including floating), then you really need to check the fat soluble ones, but I would do that regardless.
Oh, and for your B-12, be sure your level stays above 400, even though the lower end of the lab ref range may state 200 is the low for normal as many people have neuro symptoms between 200 and 400. They really need to bring that lower end up to 400 at the lowest, but these things take time, it seems.
I had neuro symptoms, and was below 400 on the lab slip for B-12. Instead of having shots, I just took the sublingual B-12 put out by Biochem, and was able to easily get my B-12 level up right in the middle of the normal range, and reduce my obvious symptoms from not absorbing enough B-12.
Be SURE to check your bones frequently. I wish I had as much success with my bones as everything else, but then, I'm awful at following the osteoporosis regime. People are weird, ya know that?!!! Ha!
Nice to meet you, and good luck with your endeavor to stop this beast.
I have been having perfectly normal stools now since 2004, with diet alone (see my sensitivities to the left of this message) and lovin' it! Many others eventually got there as well. Let's hope you will, and soon!
Yours, Luce
Luce,
The problem with most commercial almond milks is that they contain soy. The makers of Rice Dream have just introduced an almond milk that is free of all allergens, however. I'm not sure if it has arrived at the stores yet, but their website displays it.
http://www.tastethedream.com/products/p ... 38/360.php
Note that the vitamin D that it contains is not D3, however - it's D2.
Tex
The problem with most commercial almond milks is that they contain soy. The makers of Rice Dream have just introduced an almond milk that is free of all allergens, however. I'm not sure if it has arrived at the stores yet, but their website displays it.
http://www.tastethedream.com/products/p ... 38/360.php
Note that the vitamin D that it contains is not D3, however - it's D2.
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 purchased a couple of 64 oz. cartons of Almond Dream milk at Whole Foods for $4.79 each last week. The 32 oz. cartons are on sale this week at Whole Foods for $2.00 each.
I don't like the flavor as much as Rice Dream - it tastes like milk with almond extract, of course, but it's OK. Most important, since I've been drinking it, I've had perfect Normans. I'm not ready to contribute that to the Almond Dream just yet, but it does show that the Almond Dream isn't hurting me.
I checked another grocery store today to see if they were carrying the Almond Dream and they were not yet.
Gloria
I don't like the flavor as much as Rice Dream - it tastes like milk with almond extract, of course, but it's OK. Most important, since I've been drinking it, I've had perfect Normans. I'm not ready to contribute that to the Almond Dream just yet, but it does show that the Almond Dream isn't hurting me.
I checked another grocery store today to see if they were carrying the Almond Dream and they were not yet.
Gloria
You never know what you can do until you have to do it.
Well gang,
I have had a pretty good week. I have continued on the Guts and Glory Diet and have progressed into phase 2 with excellent results. I was suspicious that my bad weekend last weekend was due to some Chinese herbs my Homeopath started me on rather than the goats yogurt. I had my husband the Chiropractor muscle test both and it showed the herbs were the problem. I stayed on the soup only diet until Thursday and then slowly introduced the yogurt instead of flooding my gut as the program instructs. I have had a great decrease in the # of stools, yesterday only 2 (they were soft, not D), and today I had my first formed stool in almost 10 weeks. I know a number of you were adverse to eating dirt, but the clay that the diet suggests is really quite soothing to the bowel. Did you know clay was one of the active ingredients in Kaopectate (sp?) until the 1990's. I did eliminate the chicken feet in the Brasco Broth, that was quite unappealing to me, and I couldn't find any organic ones so I thought it was more improtant to have a "Clean" broth than adding the chicken feet. I did not understand the importance of them anyway.
I went to my endocrinologist for a f/u on Friday, he is one of the most intellegent people I have ever met. He treats the patient, not the symptoms and thinks out of the box even more than my Homeopath. He has helped me so much with my thyroid condition, and using supplements we have almost completely reversed my osteopenia to normal. He sees a fair amount of MC since those with thyroid conditions and diabetics are more prone to developing it. I proposed the theory of Dr. Fine regarding genetics and MC and gluten/lactose intolerance. He put it like this. When We mapped the human genome that is exactly what we got , a map not a blueprint for each individual. Many of us have genes for diseases that we will never know because they are never expressed. What counts is the expression of the gene. He stated that one person with the same gene may not have all of the other factors that line up for that gene to actually be expressed. Each persons blueprint is unique and can have different genes that effect one person in one way and be completely silent for another and vice versa. This might explain why my mother's symptoms of MC completely resolved after treatment with no food intolerances.
I am convinced after this week I do not have a lactose or casien sensitivity as I have been tolerating about 3 cups of goats yogurt a day for the last two days. I am really starting to feel better except for fatigue which I expect to improve as my nutrition improves. (I was able to ride my bike 21 miles on friday afternoon, but it was much more difficult than before I devleoped MC. I am going to make it to that Century Ride on May 2 come hell or high water.) It will be very interesting to see how my body reacts to gluten when I reach the stage in this diet to begin consuming it.
When I first signed onto this forum I felt hopeless, I thought I was going to have to change every facet of my life with out dairy or gluten, especially after reading the posts directed to me. I cried almost nonstop for 24 hours. I don't want any other newcomer to feel that dispair. Many of you have multiple food intolerances, but that does not mean we all will. I highly reccomend the Guts and Glory diet at this time. It is difficult eating the same thing (Brasco Broth) day after day three meals a day, but if you really stick with it, I believe it can work. (plus I have been fighting to loose about 15 lbs for years, and it is all gone now) It makes so much sense, first rest the gut and allow it to heal
7-14 days, then add good bacteria to renormalize the gut 7-14 days, then slowly add foods back in that are reccomended which is much like the paleo diet with the addition of fermented dairy and fermented vegies.
Thanks for all your help, I will keep you updated.
KD
I have had a pretty good week. I have continued on the Guts and Glory Diet and have progressed into phase 2 with excellent results. I was suspicious that my bad weekend last weekend was due to some Chinese herbs my Homeopath started me on rather than the goats yogurt. I had my husband the Chiropractor muscle test both and it showed the herbs were the problem. I stayed on the soup only diet until Thursday and then slowly introduced the yogurt instead of flooding my gut as the program instructs. I have had a great decrease in the # of stools, yesterday only 2 (they were soft, not D), and today I had my first formed stool in almost 10 weeks. I know a number of you were adverse to eating dirt, but the clay that the diet suggests is really quite soothing to the bowel. Did you know clay was one of the active ingredients in Kaopectate (sp?) until the 1990's. I did eliminate the chicken feet in the Brasco Broth, that was quite unappealing to me, and I couldn't find any organic ones so I thought it was more improtant to have a "Clean" broth than adding the chicken feet. I did not understand the importance of them anyway.
I went to my endocrinologist for a f/u on Friday, he is one of the most intellegent people I have ever met. He treats the patient, not the symptoms and thinks out of the box even more than my Homeopath. He has helped me so much with my thyroid condition, and using supplements we have almost completely reversed my osteopenia to normal. He sees a fair amount of MC since those with thyroid conditions and diabetics are more prone to developing it. I proposed the theory of Dr. Fine regarding genetics and MC and gluten/lactose intolerance. He put it like this. When We mapped the human genome that is exactly what we got , a map not a blueprint for each individual. Many of us have genes for diseases that we will never know because they are never expressed. What counts is the expression of the gene. He stated that one person with the same gene may not have all of the other factors that line up for that gene to actually be expressed. Each persons blueprint is unique and can have different genes that effect one person in one way and be completely silent for another and vice versa. This might explain why my mother's symptoms of MC completely resolved after treatment with no food intolerances.
I am convinced after this week I do not have a lactose or casien sensitivity as I have been tolerating about 3 cups of goats yogurt a day for the last two days. I am really starting to feel better except for fatigue which I expect to improve as my nutrition improves. (I was able to ride my bike 21 miles on friday afternoon, but it was much more difficult than before I devleoped MC. I am going to make it to that Century Ride on May 2 come hell or high water.) It will be very interesting to see how my body reacts to gluten when I reach the stage in this diet to begin consuming it.
When I first signed onto this forum I felt hopeless, I thought I was going to have to change every facet of my life with out dairy or gluten, especially after reading the posts directed to me. I cried almost nonstop for 24 hours. I don't want any other newcomer to feel that dispair. Many of you have multiple food intolerances, but that does not mean we all will. I highly reccomend the Guts and Glory diet at this time. It is difficult eating the same thing (Brasco Broth) day after day three meals a day, but if you really stick with it, I believe it can work. (plus I have been fighting to loose about 15 lbs for years, and it is all gone now) It makes so much sense, first rest the gut and allow it to heal
7-14 days, then add good bacteria to renormalize the gut 7-14 days, then slowly add foods back in that are reccomended which is much like the paleo diet with the addition of fermented dairy and fermented vegies.
Thanks for all your help, I will keep you updated.
KD
Hi KD,
It's good to see that you're feeling better, and making progress. There are almost always several solutions to every problem, and we are always open to new ideas here, so I hope your chosen program will work for you. You are quite correct that we all respond differently to various foods and meds.
Your mention of clay rings a bell, and I'll bet that the clay you're referring to is bentonite. Bentonite is a very fine textured clay, and it has been used for making moulds, for metal casting, for hundreds of years, because of it's ability to transfer fine detail. One of the interesting characteristics of bentonite, is it's ability to mask certain toxins, as they journey through the GI system.
Back in the late 1980s, and early 1990s, there were several years of drought across the southern U. S., and the corn crop developed a mycotoxin problem, due to either of two tropical fungi, (aspergillis parasiticus, and aspergillis flavus), that can develop in drought-stressed corn in North America. (The rest of the world can have a similar problem, but it often involves different fungi). Anyway, the mycotoxin in question here is a by-product of one or both of these particular fungi, and it's known as aflatoxin. It's such a powerful carcinogen, that it has been determined that any presence greater than 20 parts per billion, (ppb), can cause cancer, liver damage, and a condition known as aflatoxicosis, that can be fatal, if a sufficient quantity of aflatoxin is ingested, on a cumulative basis. Pigs are especially sensitive to this mycotoxin, but pig farmers discovered that they could add about 2 % bentonite to the ration, and the aflatoxin would be masked, and no symptoms would develop. Scientific research conducted at the land grant universities, proved that this was a valid discovery. I'm not aware of any research to extend the use of this masking effect for any other purpose, but it is entirely within the realm of possibility, that bentonite might also mask the offending gliadins in gluten, that we react to. It might also mask the effects of casein, since the amino acid sequences that we react to in casein, are so very similar to the problematic amino acid sequences in gluten that trigger our reactions. With that in mind, I have a hunch that as long as you ingest sufficient quantities of bentonite, you might be invincible to the effects of gluten. Time will tell, I suppose, as you continue your treatment.
Virtually everyone with any form of enteritis, (even with an intestinal virus), is at least temporarily lactose intolerant, simply because production of the lactase enzyme is severely curtailed, when enteritis is present, and production resumes, when the enteritis is past. That doesn't mean that someone who is lactose-intolerant cannot tolerate any amount of lactose, however. Most doctors will tell you that lactose-intolerant individuals can usually still produce enough lactase to be able to properly digest at least an 8 oz glass of milk, without any problems. That would be a moot point in your case, though, since yogurt is pretty much lactose-free, if it's properly made.
I apologize if we made you feel hopeless, when you read our posts, because that certainly wasn't our intention. Perhaps we tend to "cut to the chase" too quickly, but when you have MC, the sooner you can get your symptoms under control, (by whatever means), the better off you are, obviously, and we responded with the best of intentions. I'm sorry it didn't come across that way. Most newbies come here to discover proven treatment methods that bring results, as soon as possible, because they have tried what the GI docs recommend, without beneficial results. If your program works, then we will be able to add it to our "repertoire" of responses.
Obviously, this makes your treatment program an item of great interest to us, since it might offer an alternate route to remission, so yes, we will appreciate your keeping us updated.
Tex
It's good to see that you're feeling better, and making progress. There are almost always several solutions to every problem, and we are always open to new ideas here, so I hope your chosen program will work for you. You are quite correct that we all respond differently to various foods and meds.
Your mention of clay rings a bell, and I'll bet that the clay you're referring to is bentonite. Bentonite is a very fine textured clay, and it has been used for making moulds, for metal casting, for hundreds of years, because of it's ability to transfer fine detail. One of the interesting characteristics of bentonite, is it's ability to mask certain toxins, as they journey through the GI system.
Back in the late 1980s, and early 1990s, there were several years of drought across the southern U. S., and the corn crop developed a mycotoxin problem, due to either of two tropical fungi, (aspergillis parasiticus, and aspergillis flavus), that can develop in drought-stressed corn in North America. (The rest of the world can have a similar problem, but it often involves different fungi). Anyway, the mycotoxin in question here is a by-product of one or both of these particular fungi, and it's known as aflatoxin. It's such a powerful carcinogen, that it has been determined that any presence greater than 20 parts per billion, (ppb), can cause cancer, liver damage, and a condition known as aflatoxicosis, that can be fatal, if a sufficient quantity of aflatoxin is ingested, on a cumulative basis. Pigs are especially sensitive to this mycotoxin, but pig farmers discovered that they could add about 2 % bentonite to the ration, and the aflatoxin would be masked, and no symptoms would develop. Scientific research conducted at the land grant universities, proved that this was a valid discovery. I'm not aware of any research to extend the use of this masking effect for any other purpose, but it is entirely within the realm of possibility, that bentonite might also mask the offending gliadins in gluten, that we react to. It might also mask the effects of casein, since the amino acid sequences that we react to in casein, are so very similar to the problematic amino acid sequences in gluten that trigger our reactions. With that in mind, I have a hunch that as long as you ingest sufficient quantities of bentonite, you might be invincible to the effects of gluten. Time will tell, I suppose, as you continue your treatment.
Virtually everyone with any form of enteritis, (even with an intestinal virus), is at least temporarily lactose intolerant, simply because production of the lactase enzyme is severely curtailed, when enteritis is present, and production resumes, when the enteritis is past. That doesn't mean that someone who is lactose-intolerant cannot tolerate any amount of lactose, however. Most doctors will tell you that lactose-intolerant individuals can usually still produce enough lactase to be able to properly digest at least an 8 oz glass of milk, without any problems. That would be a moot point in your case, though, since yogurt is pretty much lactose-free, if it's properly made.
I apologize if we made you feel hopeless, when you read our posts, because that certainly wasn't our intention. Perhaps we tend to "cut to the chase" too quickly, but when you have MC, the sooner you can get your symptoms under control, (by whatever means), the better off you are, obviously, and we responded with the best of intentions. I'm sorry it didn't come across that way. Most newbies come here to discover proven treatment methods that bring results, as soon as possible, because they have tried what the GI docs recommend, without beneficial results. If your program works, then we will be able to add it to our "repertoire" of responses.
Obviously, this makes your treatment program an item of great interest to us, since it might offer an alternate route to remission, so yes, we will appreciate your keeping us updated.
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.
Hi KD,
I'm glad to read that you're getting results from following the "Guts and Glory" diet. It took a lot of tenacity for you to eat nothing but broth for as long as you did, but it sounds like it's working for you.
Tex,
Your knowledge is amazing. Your explanation sounds very plausible. I just looked in the book to see if the clay is bentonite, and sure enough, it is! I can't remember if the book recommends that the bentonite be taken after you are healed.
I recall that the authors say that you are cured of the intestinal problems, rather than achieving a remission, as we say. It will be interesting indeed to see how your disease progresses, KD, as time passes and you introduce new foods. Be sure to keep us posted because we are always interested in how others are treating their disease.
Gloria
I'm glad to read that you're getting results from following the "Guts and Glory" diet. It took a lot of tenacity for you to eat nothing but broth for as long as you did, but it sounds like it's working for you.
Tex,
Your knowledge is amazing. Your explanation sounds very plausible. I just looked in the book to see if the clay is bentonite, and sure enough, it is! I can't remember if the book recommends that the bentonite be taken after you are healed.
I recall that the authors say that you are cured of the intestinal problems, rather than achieving a remission, as we say. It will be interesting indeed to see how your disease progresses, KD, as time passes and you introduce new foods. Be sure to keep us posted because we are always interested in how others are treating their disease.
Gloria
You never know what you can do until you have to do it.
Tex,
I kind of have to agree with KD on her feelings of hopelessness. When the old board was active, I had a member tell me the only way to remission with gluten free and possibly all these other items. I had had the gluten test from Entrolabs and the number, which as I remember expresses sensitivity, was very low. My intolerances that I have listed are based on blood testing and actual experience. While I am very glad that gluten, dairy and soy free works for a number of folks I think we need to offer a variety of way to achieve remission.
I do have to admit I am in the midst of a flare right now and am working to figure out why. For the last year + I get terrible muscle cramps (the kind that wake you from sleep) up to a week before the D starts. This time I also had a burning sensation from my stomach through my large intestines, like eating very spicy food. I put myself back on a modified BRAT diet for a few days and things are calming down. As I went back through my food diary I see no change in what I have been eating for the last several years. I have been reluctant to post any of this because some of the support I have seen, while I am sure it is meant as support, feels more like an attack.
Anyway, I do try to keep up with what is going on.
Just my two cents worth.
Jan
I kind of have to agree with KD on her feelings of hopelessness. When the old board was active, I had a member tell me the only way to remission with gluten free and possibly all these other items. I had had the gluten test from Entrolabs and the number, which as I remember expresses sensitivity, was very low. My intolerances that I have listed are based on blood testing and actual experience. While I am very glad that gluten, dairy and soy free works for a number of folks I think we need to offer a variety of way to achieve remission.
I do have to admit I am in the midst of a flare right now and am working to figure out why. For the last year + I get terrible muscle cramps (the kind that wake you from sleep) up to a week before the D starts. This time I also had a burning sensation from my stomach through my large intestines, like eating very spicy food. I put myself back on a modified BRAT diet for a few days and things are calming down. As I went back through my food diary I see no change in what I have been eating for the last several years. I have been reluctant to post any of this because some of the support I have seen, while I am sure it is meant as support, feels more like an attack.
Anyway, I do try to keep up with what is going on.
Just my two cents worth.
Jan
I felt and still feel HOPEFUL after finding Tex and the PP. Do I like giving up gluten, dairy and soy, NO, but it sure works. No one ever said anyone HAS to do what we are doing. It is an option. This site has meant no more D for me and I am eternally grateful.
I should have said, it works for me.
I should have said, it works for me.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Jan,
I appreciate your posting of your impressions of this topic, especially since I recognize that doing so was not an easy task. I am in agreement with you, as I have noticed that over the years of this board's existence, we have slowly, but surely, become more "aggressive" with our responses, especially to newbies, and this trend seems to have accelerated, in recent months.
In 69 days, this board will be 4 years old. I am told that 4 years is the approximate "normal" lifespan of discussion boards such as this, so it's no surprise that we would experience "growing pains" at this point, since many/most boards tend to disintegrate, due to contention, or die, due to apathy, by the time they reach this age.
When we created this board, one of the primary goals was to eliminate, (or at least minimize), what I/we perceived as a major problem with the old board, (at the time), namely, a constant state of contention between those taking meds, and those who thought that the "the diet" was the only acceptable form of treatment. We, (the founding members), decided to make a concerted attempt to support the use of meds, (as an alternative, or as a supplement, to the diet), or any other treatment method that would reliably, (IOW, that would be effective in most cases), help to relieve the symptoms of MC, so that newbies could make their own decisions about which path they preferred to follow.
It's very difficult, (and probably impossible), to please everyone.
On the old board, there was a very strong bias toward "the diet". Most of the GFers preferred to hang out in the "GF Kitchen" on the old board, which meant that members taking meds felt "left out", since they had no interest in the discussions going on in the "Kitchen". In order to try to prevent the "Clique in the Kitchen" syndrome from developing on the new board, against the wishes of those who feel strongly about the diet, I resisted adding a "GF Kitchen" to this board. The result was minimal participation by many of those who strongly advocated the GF diet, and who are best qualified to offer support and advice about the diet. Sooooooo, since most of the "hard-line" GF advocates are following the paleo diet anyway, (or a modified version of the paleo diet), we recently added a category of forums dedicated to information and discussions about multiple intolerances, the paleo diet, etc., but after a brief flurry of activity, nothing much is happening there, anymore.
As in everything, though, the more we try to change, the more things stay the same.
The point is, most of us are quite passionate about the treatment program that we were able to use to gain remission, and so it is not surprising that we tend to promote it. For those of us who suffered for years, before finding a solution, (due to GI docs who don't understand MC at all), it's such an incredible feeling to be free of the symptoms of MC, that we feel obligated to try to help others to "see the light", and to encourage them to try the same treatment method.
Regardless of passionate feelings, no member of this board should feel so hopeless that she spends 24 hours crying, because of the responses she received to her posts. That's exactly the opposite of what we are supposed to be accomplishing here. We have to remember that each and every one of us goes through the well known "seven stages of grief", following a diagnosis of MC, and we should remember from experience, that it's very difficult to get past the first stage, which is "denial".
We have to keep sight of the fact that the primary goal of this board was, is, and always will be, to provide support, (which implies understanding, comforting, etc.), and helpful information, to newbies and established members alike. We have to remember that we're not here to "force" members into remission - we're here to provide the necessary support and information that will allow them to "discover" treatment methods that actually bring good results, and to help "shape" their thinking, so that they will make decisions which result in helping them to achieve remission, hopefully, with a minimum amount of time wasted on "wild goose chases" which simply prolong the suffering.
The medical community as a whole, seems to still be mostly ineffective at treating this disease - they are still in the "discovery" phase, for the most part. Their track record for bringing MC patients to a state even close to resembling remission, is abysmal, overall. Most patients finally just stop going back to their GI doc, out of frustration, and when they don't return, the GI doc chalks them up as another "success story". (Just ask any GI doc - he or she will tell you that you are the only patient who is having problems with the treatment program, because most of his/her patients are "in remission", since they haven't been back seeking help.)
The members of this board, (as a group), have a remission rate that would make the best doctor in any specialty, smile, with satisfaction. That implies that we're at the cutting edge of technology, when it comes to living with, and controlling the symptoms of MC, and in order to maintain our position, we have to share information, because we are the best research group in the world. No one knows more about MC than those who have it, and this especially applies to those who have it, and are successfully controlling it. Since we can never have too many alternative approaches, (with proven track records), for treating this disease, we need to always remain open-minded, and actively seeking new methods of treatment which are effective. And most importantly, we need to remember that we are all in this together, regardless of how we acquired remission, and regardless of what we feel is the best treatment method. First, last, and always, we have to keep in mind that we are all different, with different lifestyles, and different goals in life. Each and every one of us contributes more useful information to this board than we realize, and each and every one of us learns from virtually everyone else here, because regardless of our path in life, each one of us is an expert at something, and after we have shared information here, for a while, each one of us knows more about effectively treating MC, than roughly 98% of the GI docs out there.
When I say "we", I do mean we, and I intend to take my responses down a notch, so that I will no longer aggressively attempt to "protect members from themselves", by using a "fast track" approach to my recommendations for treatments. In the future, I will try to restrain myself to only answering questions, not volunteering treatment advice, unless it is asked for. If/when I violate that policy, I hope that someone will point out my transgressions.
Tex
I appreciate your posting of your impressions of this topic, especially since I recognize that doing so was not an easy task. I am in agreement with you, as I have noticed that over the years of this board's existence, we have slowly, but surely, become more "aggressive" with our responses, especially to newbies, and this trend seems to have accelerated, in recent months.
In 69 days, this board will be 4 years old. I am told that 4 years is the approximate "normal" lifespan of discussion boards such as this, so it's no surprise that we would experience "growing pains" at this point, since many/most boards tend to disintegrate, due to contention, or die, due to apathy, by the time they reach this age.
When we created this board, one of the primary goals was to eliminate, (or at least minimize), what I/we perceived as a major problem with the old board, (at the time), namely, a constant state of contention between those taking meds, and those who thought that the "the diet" was the only acceptable form of treatment. We, (the founding members), decided to make a concerted attempt to support the use of meds, (as an alternative, or as a supplement, to the diet), or any other treatment method that would reliably, (IOW, that would be effective in most cases), help to relieve the symptoms of MC, so that newbies could make their own decisions about which path they preferred to follow.
It's very difficult, (and probably impossible), to please everyone.
On the old board, there was a very strong bias toward "the diet". Most of the GFers preferred to hang out in the "GF Kitchen" on the old board, which meant that members taking meds felt "left out", since they had no interest in the discussions going on in the "Kitchen". In order to try to prevent the "Clique in the Kitchen" syndrome from developing on the new board, against the wishes of those who feel strongly about the diet, I resisted adding a "GF Kitchen" to this board. The result was minimal participation by many of those who strongly advocated the GF diet, and who are best qualified to offer support and advice about the diet. Sooooooo, since most of the "hard-line" GF advocates are following the paleo diet anyway, (or a modified version of the paleo diet), we recently added a category of forums dedicated to information and discussions about multiple intolerances, the paleo diet, etc., but after a brief flurry of activity, nothing much is happening there, anymore.
As in everything, though, the more we try to change, the more things stay the same.
The point is, most of us are quite passionate about the treatment program that we were able to use to gain remission, and so it is not surprising that we tend to promote it. For those of us who suffered for years, before finding a solution, (due to GI docs who don't understand MC at all), it's such an incredible feeling to be free of the symptoms of MC, that we feel obligated to try to help others to "see the light", and to encourage them to try the same treatment method.
Regardless of passionate feelings, no member of this board should feel so hopeless that she spends 24 hours crying, because of the responses she received to her posts. That's exactly the opposite of what we are supposed to be accomplishing here. We have to remember that each and every one of us goes through the well known "seven stages of grief", following a diagnosis of MC, and we should remember from experience, that it's very difficult to get past the first stage, which is "denial".
We have to keep sight of the fact that the primary goal of this board was, is, and always will be, to provide support, (which implies understanding, comforting, etc.), and helpful information, to newbies and established members alike. We have to remember that we're not here to "force" members into remission - we're here to provide the necessary support and information that will allow them to "discover" treatment methods that actually bring good results, and to help "shape" their thinking, so that they will make decisions which result in helping them to achieve remission, hopefully, with a minimum amount of time wasted on "wild goose chases" which simply prolong the suffering.
The medical community as a whole, seems to still be mostly ineffective at treating this disease - they are still in the "discovery" phase, for the most part. Their track record for bringing MC patients to a state even close to resembling remission, is abysmal, overall. Most patients finally just stop going back to their GI doc, out of frustration, and when they don't return, the GI doc chalks them up as another "success story". (Just ask any GI doc - he or she will tell you that you are the only patient who is having problems with the treatment program, because most of his/her patients are "in remission", since they haven't been back seeking help.)
The members of this board, (as a group), have a remission rate that would make the best doctor in any specialty, smile, with satisfaction. That implies that we're at the cutting edge of technology, when it comes to living with, and controlling the symptoms of MC, and in order to maintain our position, we have to share information, because we are the best research group in the world. No one knows more about MC than those who have it, and this especially applies to those who have it, and are successfully controlling it. Since we can never have too many alternative approaches, (with proven track records), for treating this disease, we need to always remain open-minded, and actively seeking new methods of treatment which are effective. And most importantly, we need to remember that we are all in this together, regardless of how we acquired remission, and regardless of what we feel is the best treatment method. First, last, and always, we have to keep in mind that we are all different, with different lifestyles, and different goals in life. Each and every one of us contributes more useful information to this board than we realize, and each and every one of us learns from virtually everyone else here, because regardless of our path in life, each one of us is an expert at something, and after we have shared information here, for a while, each one of us knows more about effectively treating MC, than roughly 98% of the GI docs out there.
When I say "we", I do mean we, and I intend to take my responses down a notch, so that I will no longer aggressively attempt to "protect members from themselves", by using a "fast track" approach to my recommendations for treatments. In the future, I will try to restrain myself to only answering questions, not volunteering treatment advice, unless it is asked for. If/when I violate that policy, I hope that someone will point out my transgressions.
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.