Visit the Microscopic Colitis Foundation Website
Hi all -
I am currently in shock, i think. I was diagnosed with LC maybe 2 years ago, on my third major flair-up. 6-8 weeks of Entocort has helped in the past, but I don't want to deal with this forever. (I'm 40 yrs. old)
SO, I tried the 8 weeks of Pepto - absolutely no help - D came right back with a vengence.
Before calling for a script of Entocort, I stumbled on your site and decided to go gluten free for the day. No diarrhea today AT ALL... no pain, no gassy feeling, feel thinner, feel more energy. Continuing no gluten. Can it really be that easy? Is Gluten intolerance necessarily Celiac? Can't seem to find a conclusive answer on that one. (I had tested negative, but that doesn't seem to mean too much.)
So glad this board exists... Gastro guy never heard of MC/LC being helped by no gluten....crazy really.
Thanks again!
Laurie
another newbie!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Laurie, so glad you found us. Yes, going gluten free can really help as you have found. If you should relapse (I hope not)then suspect dairy and/or soy.Yes, you can have gluten sensitivity without having Celiac Disease.
Most doctors don't know that eliminating gluten will control your Microscopic Colitis. In fact, most just roll their eyes
and say that diet has nothing to do with it. We know otherwise. Most, but not all of us, are helped by going gluten free.http://www.huffingtonpost.com/dr-mark-h ... 79089.html
In addition to the great information on the PP site is here is a primer on gluten http://www.webmd.com/diet/slideshow-gluten-free-diet
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Laurie,
Welcome to our internet family. Wow! You had an unbelievably fast response to the diet. It usually takes much longer for most of us to respond.
Roughly 10 years ago, at least a couple of us discovered independently, (by our own experimentation), that we could control all our symptoms by diet alone. Also, a few years prior to this, a GI doc who actually has MC himself, dedicated his life to researching the disease, and he discovered the same thing, (that the symptoms of MC could be effectively treated by diet alone). Incidentally, he is also the doctor who originally developed the Pepto-Bismol treatment, that a few GI docs are now recommending as a treatment for MC. When Dr. Kenneth Fine developed the Pepto treatment, he also recommended the GF diet, as an integral part of the treatment, (otherwise, after the Pepto treatment is stopped, many/most patients will relapse). Unfortunately, (since they know that diet has nothing to do with MC), those other GI docs never bother to mention to the patient that he or she must cut gluten out of their diet, in order to remain in remission, and so a few weeks after the Pepto treatment ends, the patient relapses.
To show you how far out of the loop most GI docs are, Dr. Fine stopped recommending the Pepto treatment at least 5 or 6 years ago, but most GI docs are just now getting around to recommending it as a treatment. He stopped recommending it, because a fair number of people have adverse neurological reactions to the bismuth subsalicylate that is the primary ingredient of Pepto-Bismol, and removing all of the food intolerances from the diet will bring remission without the Pepto-Bismol, anyway, so now he recommends only the diet. Drugs such as Entocort EC can reduce the inflammation, and bring remission, but again, soon after the the drug is stopped, the patient will relapse, because until the diet is modified, the foods to which we are sensitive, will continue to generate an autoimmune reaction, resulting in more inflammation. Drugs treat the symptoms, whereas the diet prevents the symptoms from ever developing in the first place. It doesn't take a rocket scientist to figure out which is the safest and most effective treament.
Yes, non-celiac gluten sensitivity, (NCGS), is a reality, but most GI docs will argue against this point until they are blue in the face.
You know, when you think about it, it's certainly not surprising that diet might have something to do with digestive system issues. In fact, to me, it seems like kind of a no-brainer, and yet all but a handful of GI docs continue to insist that diet has absolutely nothing to do with digestive system diseases. Why they make that dumb assumption, is beyond me, but they do. (It has to be an assumption, because no medical researcher has ever objectively researched the issue, and proven that diet has no effect on these digestive system diseases). People who call themselves scientists should not make dumb assumptions.
As Joan suggested, it may not be quite as easy as it seems. It's certainly not impossible that you might be sensitive to only gluten, however, most of us who are sensitive to gluten, are also sensitive to casein, they primary protein in all dairy products. About half of us are also sensitive to soy, and all it's derivates, and many/most of it's legume relatives. Some of us are also sensitive to other food proteins, but let's hope that you are one of the lucky ones, and you have a minimum of intolerances.
Here's why Joan mentioned the possibility of the other intolerances showing up later: Note that this is just my theory, and I don't believe that you will find any other references to it on the internet, (and virtually all doctors will certainly deny it), but our cumulative experiences here on this board, over the years, have shown that the immune system appears to have a "one-track mind". IOW, it typically concentrates on only the most significant "allergen" that is present, at any given moment in time. This is simply saying that the immune system concentrates on what it perceives as the biggest threat to the overall health of the body, and it pretty much ignores any other immune system issues. Once the primary threat is brought under control, then it will turn it's attention to the next greatest threat that is present. For MC, the "allergen" hierarchy usually goes like this: gluten, dairy, soy, eggs, yeast, corn, etc.
This means that after gluten is removed from the diet, and the gut begins to heal from the damage caused by the gluten, the production of gluten antibodies will begin to decline, and once the level falls below the threshold that is necessary to trigger a reaction, (we all have different thresholds, to the various intolerances, depending on our individual sensitivities), then the immune system will notice the threat imposed by casein, (dairy), and it will "attack" casein, and antibody production to casein will surge, and the patient will develop the clinical symptoms of casein intolerance. After casein is removed from the diet, and some of the damage heals, so that antibody production goes down, then if the patient is also sensitive to the primary protein in soy, (soya), soya antibodies will be produced, and a reaction to soy will proceed to develop, and so fourth and so on.
As evidence of the proof of that theory, I offer the observation that all of the inflammatory bowel diseases, (including Crohn's disease, ulcerative colitis, and microscopic colitis), can be brought to remission, (in virtually every case), by the use of certain parasites. For example, if a patient ingests helminths, (specifically, pig whip worm ova), as the eggs hatch and develop into worms, the immune system will perceive it as a bigger threat than the IBD, and it will concentrate on the threat imposed by the whipworm invasion, and it will totally ignore whatever caused it to trigger the autoimmune reaction that resulted in Crohn's, UC, or MC, and the IBD will promptly go into remission, and remain there, as long as the helminths are present. Pig whip worms cannot reproduce in the human body, so that if the helminths are allowed to die out, (by natural attrition - IOW, if additional ova are not supplemented, on at least a monthly basis), then the IBD will relapse, as the helminths die out. (I can cite references, if you or anyone else are interested in this type of treatment, and I can even tell you where to buy the ova, to treat yourself).
Again, welcome aboard, and I hope that the removal of gluten from your diet will be the only diet change that you need to make, in order to maintain remission. Please keep us updated on your progress, because we learn from each other here, and the fact that you responded so quickly to the diet, makes your case a valuable source of information to those diagnosed with this disease in the future.
Tex (Wayne)
Welcome to our internet family. Wow! You had an unbelievably fast response to the diet. It usually takes much longer for most of us to respond.
Roughly 10 years ago, at least a couple of us discovered independently, (by our own experimentation), that we could control all our symptoms by diet alone. Also, a few years prior to this, a GI doc who actually has MC himself, dedicated his life to researching the disease, and he discovered the same thing, (that the symptoms of MC could be effectively treated by diet alone). Incidentally, he is also the doctor who originally developed the Pepto-Bismol treatment, that a few GI docs are now recommending as a treatment for MC. When Dr. Kenneth Fine developed the Pepto treatment, he also recommended the GF diet, as an integral part of the treatment, (otherwise, after the Pepto treatment is stopped, many/most patients will relapse). Unfortunately, (since they know that diet has nothing to do with MC), those other GI docs never bother to mention to the patient that he or she must cut gluten out of their diet, in order to remain in remission, and so a few weeks after the Pepto treatment ends, the patient relapses.
To show you how far out of the loop most GI docs are, Dr. Fine stopped recommending the Pepto treatment at least 5 or 6 years ago, but most GI docs are just now getting around to recommending it as a treatment.
He stopped recommending it, because a fair number of people have adverse neurological reactions to the bismuth subsalicylate that is the primary ingredient of Pepto-Bismol, and removing all of the food intolerances from the diet will bring remission without the Pepto-Bismol, anyway, so now he recommends only the diet. Drugs such as Entocort EC can reduce the inflammation, and bring remission, but again, soon after the the drug is stopped, the patient will relapse, because until the diet is modified, the foods to which we are sensitive, will continue to generate an autoimmune reaction, resulting in more inflammation. Drugs treat the symptoms, whereas the diet prevents the symptoms from ever developing in the first place. It doesn't take a rocket scientist to figure out which is the safest and most effective treament.Yes, non-celiac gluten sensitivity, (NCGS), is a reality, but most GI docs will argue against this point until they are blue in the face.
You know, when you think about it, it's certainly not surprising that diet might have something to do with digestive system issues. In fact, to me, it seems like kind of a no-brainer, and yet all but a handful of GI docs continue to insist that diet has absolutely nothing to do with digestive system diseases. Why they make that dumb assumption, is beyond me, but they do. (It has to be an assumption, because no medical researcher has ever objectively researched the issue, and proven that diet has no effect on these digestive system diseases). People who call themselves scientists should not make dumb assumptions. As Joan suggested, it may not be quite as easy as it seems. It's certainly not impossible that you might be sensitive to only gluten, however, most of us who are sensitive to gluten, are also sensitive to casein, they primary protein in all dairy products. About half of us are also sensitive to soy, and all it's derivates, and many/most of it's legume relatives. Some of us are also sensitive to other food proteins, but let's hope that you are one of the lucky ones, and you have a minimum of intolerances.
Here's why Joan mentioned the possibility of the other intolerances showing up later: Note that this is just my theory, and I don't believe that you will find any other references to it on the internet, (and virtually all doctors will certainly deny it), but our cumulative experiences here on this board, over the years, have shown that the immune system appears to have a "one-track mind". IOW, it typically concentrates on only the most significant "allergen" that is present, at any given moment in time. This is simply saying that the immune system concentrates on what it perceives as the biggest threat to the overall health of the body, and it pretty much ignores any other immune system issues. Once the primary threat is brought under control, then it will turn it's attention to the next greatest threat that is present. For MC, the "allergen" hierarchy usually goes like this: gluten, dairy, soy, eggs, yeast, corn, etc.
This means that after gluten is removed from the diet, and the gut begins to heal from the damage caused by the gluten, the production of gluten antibodies will begin to decline, and once the level falls below the threshold that is necessary to trigger a reaction, (we all have different thresholds, to the various intolerances, depending on our individual sensitivities), then the immune system will notice the threat imposed by casein, (dairy), and it will "attack" casein, and antibody production to casein will surge, and the patient will develop the clinical symptoms of casein intolerance. After casein is removed from the diet, and some of the damage heals, so that antibody production goes down, then if the patient is also sensitive to the primary protein in soy, (soya), soya antibodies will be produced, and a reaction to soy will proceed to develop, and so fourth and so on.
As evidence of the proof of that theory, I offer the observation that all of the inflammatory bowel diseases, (including Crohn's disease, ulcerative colitis, and microscopic colitis), can be brought to remission, (in virtually every case), by the use of certain parasites. For example, if a patient ingests helminths, (specifically, pig whip worm ova), as the eggs hatch and develop into worms, the immune system will perceive it as a bigger threat than the IBD, and it will concentrate on the threat imposed by the whipworm invasion, and it will totally ignore whatever caused it to trigger the autoimmune reaction that resulted in Crohn's, UC, or MC, and the IBD will promptly go into remission, and remain there, as long as the helminths are present. Pig whip worms cannot reproduce in the human body, so that if the helminths are allowed to die out, (by natural attrition - IOW, if additional ova are not supplemented, on at least a monthly basis), then the IBD will relapse, as the helminths die out. (I can cite references, if you or anyone else are interested in this type of treatment, and I can even tell you where to buy the ova, to treat yourself).
Again, welcome aboard, and I hope that the removal of gluten from your diet will be the only diet change that you need to make, in order to maintain remission. Please keep us updated on your progress, because we learn from each other here, and the fact that you responded so quickly to the diet, makes your case a valuable source of information to those diagnosed with this disease in the future.
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.
Excellent theories, Tex, on how this all works. Depressing to think that this
is what I have to look forward to. After watching the video on MS earlier, I feel like throwing out all the food in the house, it's pretty overwhelming.For MC, the "allergen" hierarchy usually goes like this: gluten, dairy, soy, eggs, yeast, corn, etc.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Connie,
There's no reason to believe that you will have to go through the entire hierarchy. Only half of us even get to the "soy" level, and when you get past that, the odds go down significantly, for most of us. For each of us, the hierarchy only exists to the extent of our individual intolerances. IOW, most of us won't have a problem with the lower tiered intolerances. Typically, only those individuals with double DQ genes, will have to be concerned with most of the lower tiered intolerances.
Tex
There's no reason to believe that you will have to go through the entire hierarchy. Only half of us even get to the "soy" level, and when you get past that, the odds go down significantly, for most of us. For each of us, the hierarchy only exists to the extent of our individual intolerances. IOW, most of us won't have a problem with the lower tiered intolerances. Typically, only those individuals with double DQ genes, will have to be concerned with most of the lower tiered intolerances.
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 Laurie,
Welcome here. Sorry to hear you have MC too. I recognize your gluten experience. I had one exactly the same last summer. My CC started in may 2009. Than of course I had no idea what was wrong with me, it took me 4 months to get a diagnoses. In between, I tried a couple of things out and one of them was eating gluten free. Also like you I had no idea what was happening to me. The D was over the same day I started to eat glutenfree. At that point I was convinced it was Celiac disease. As you probably know to get a diagnoses (for CD)you need to continue to eat gluten until the biopsy, so after a week I started eating gluten again. Bingo D back within a day. While I was waiting for my GI app I tried it a second time, same story. Only the third time (after my biopsy) it did not work anymore. Now I know why (because of my other tolerances). It is really interesting to read your experience, you are the first one I meet here with the same story.
Do you also have a very quick response to Entocort? In my case that worked as soon as abandon gluten (not within a day, on the same day).
I hope in your case gluten free will be enough.
Welcome here. Sorry to hear you have MC too. I recognize your gluten experience. I had one exactly the same last summer. My CC started in may 2009. Than of course I had no idea what was wrong with me, it took me 4 months to get a diagnoses. In between, I tried a couple of things out and one of them was eating gluten free. Also like you I had no idea what was happening to me. The D was over the same day I started to eat glutenfree. At that point I was convinced it was Celiac disease. As you probably know to get a diagnoses (for CD)you need to continue to eat gluten until the biopsy, so after a week I started eating gluten again. Bingo D back within a day. While I was waiting for my GI app I tried it a second time, same story. Only the third time (after my biopsy) it did not work anymore. Now I know why (because of my other tolerances). It is really interesting to read your experience, you are the first one I meet here with the same story.
Do you also have a very quick response to Entocort? In my case that worked as soon as abandon gluten (not within a day, on the same day).
I hope in your case gluten free will be enough.
Even though a father and son allergy team said your theory couldn't happen, it DID happen to me. As the PP are tired of hearing, I went GF and did really well for a month or two but then started having problems again. I suspected soy (I'd been dairy free for decades) because of the info on this site. www.enterolab.com confirmed my intolerance.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Sorry - I apparently forgot about your double DQ1 gene status.