Hello everyone! I've been struggling with MC for over 2 1/2 years now. I am a retired physician and I thought I'd have this all figured out by now, but after trying everything my great gastroenterologist recommended...I'm no better. I stopped seeing him because all he did was scratch his head and say "Gee Al, I just don't know what else to recommend..."
I've tried Budesonide, Pepto, Questran and all the over the counter stuff I read about...no help. I researched the heck out of this at the medical library where I worked, then online sites. I can tell you all the studies and articles written about this, but I'm still no better. So, here I am!! It's a pleasure to read that so many others feel the same about not knowing what else to do after we've tried everything!!
Here are my symptoms...tell me if this is atypical, or typical, please...
Diarrhea, difficulty sleeping (never had this before), anxiety at 3-4am while awake, left lower quadrant pain/discomfort, feeling like I have no purpose in life, stressed out when I have no stress. Sometimes, I feel like I get (what I call) "flairs" of these symptoms. I'll have controllable diarrhea, but then about every 2 weeks, I'll experience a flair of increased diarrhea, anxiety, insomnia that lasts for 1 - 2 days, then I'll go back to what I call normal. Does that sound familiar to anyone, or is that just me???
Thanks for your input! Al
I just joined...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Al,
Yep, that sounds like MC. Welcome to the forum. Sorry that you're having to deal with this, but hopefully you'll find your solution here. This is not what most of us have been looking forward to for our retirement years, so we have to learn how to control it.
This forum is now over 12 years old, and in all those years, we've accumulated a lot of data. The medical treatments can sometimes suppress the symptoms, but they only provide temporary benefits at best, for most people. For lasting success, we've found that changing our diet to avoid the foods that perpetuate the inflammation, is the only control treatment that works in the long-term. We all have either celiac or non-celiac gluten sensitivity, which almost always causes other food sensitivities, such as casein, soy, and in some cases, eggs, plus other foods. And certain other foods (such as fiber, sugar, spices, etc.) irritate the gut while it's inflamed, so we have to avoid them during recovery
Despite the attitude of most gastroenterologists that diet makes no difference with MC, a restrictive and extremely strict (even avoiding trace amounts) diet will usually put us in lasting remission, provided that we cab track down all the problem foods and avoid them.
Again, welcome aboard, and please feel free to ask anything.
Tex
Yep, that sounds like MC. Welcome to the forum. Sorry that you're having to deal with this, but hopefully you'll find your solution here. This is not what most of us have been looking forward to for our retirement years, so we have to learn how to control it.
This forum is now over 12 years old, and in all those years, we've accumulated a lot of data. The medical treatments can sometimes suppress the symptoms, but they only provide temporary benefits at best, for most people. For lasting success, we've found that changing our diet to avoid the foods that perpetuate the inflammation, is the only control treatment that works in the long-term. We all have either celiac or non-celiac gluten sensitivity, which almost always causes other food sensitivities, such as casein, soy, and in some cases, eggs, plus other foods. And certain other foods (such as fiber, sugar, spices, etc.) irritate the gut while it's inflamed, so we have to avoid them during recovery
Despite the attitude of most gastroenterologists that diet makes no difference with MC, a restrictive and extremely strict (even avoiding trace amounts) diet will usually put us in lasting remission, provided that we cab track down all the problem foods and avoid them.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi, Al. Welcome to our internet family. I am the same as Brandy, in total remission by diet alone. I live a normal life without fear of knowing where every bathroom is. Diet is the key to remission.
Marcia
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Thank you all.
I appreciate your quick response. I look forward to reading the book which is in the mail. Have a great Christmas!!
Welcome Al,
I have finally hit a remission spot in life after 2.5 years of strict diet changes and I did not use any medications to aid me, I just turned 50 and I had been dealing with MC symptoms for 10 years prior to the beginning of my healing journey.
I will have flares if I have a stressed moment (such as a bad weather day and driving home in very scary conditions - two days after that episode I had a bad bathroom day) but it doesn't take me long to get back to my normal routine.
You will find great help and many answers that are not in the mainstream media here.
Cheers
Erica
I have finally hit a remission spot in life after 2.5 years of strict diet changes and I did not use any medications to aid me, I just turned 50 and I had been dealing with MC symptoms for 10 years prior to the beginning of my healing journey.
I will have flares if I have a stressed moment (such as a bad weather day and driving home in very scary conditions - two days after that episode I had a bad bathroom day) but it doesn't take me long to get back to my normal routine.
You will find great help and many answers that are not in the mainstream media here.
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Welcome, I have been in remission for 1 year with diet and some loperamide. I couldn't take steroids or pepto bismal. I am a retired RN so letting go of some of the medical advice from my Docs was hard but I embraced diet changes and along with Vit D and Magnesium from this forum.
Once again welcome.
Once again welcome.
Janie
Gluten often/usually dominates our immune system for a while, even after we eliminate it from our diet. Anti-gliadin antibodies have a 120-day half-life, so it often takes about 6 or 8 weeks for the anti-gliadin antibodies to decline to a level where they no longer dominate our immune system reactions. At that point you should be enjoying at least temporary remission as your immune system adjusts and becomes aware of any other antibodies that might be a problem, and you will be able to more easily tell if/when a food you eat causes your immune system to react. That's provided that you are not taking budesonide or some other corticosteroid. A corticosteroid often masks reactions so that we are not able to detect some (or all, in some cases) food sensitivities while we are taking it.
Tex
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.
Thanks to you all.
I see the list of things to avoid eating. Is there a list of foods that we CAN eat? Do I need to stop drinking beer? What about wine? Thank you, again.
This post pretty well covers the topic:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328
Basically, virtually no one reacts to proteins such as turkey, lamb, goat (cabrito), venison, rabbit, goose, duck, quail, pheasant, etc. Chicken, beef, and pork are usually safe, but not for some of us. Fiber should be minimized and vegetables such as carrots, squash, and green beans should be peeled (if they have a peel) and overcooked. Most of us can tolerate white rice (not brown), corn, and other GF grains, but not everyone, so the safest diet excludes them (at least during recovery if you're going to do an elimination diet instead of ordering an EnteroLab stool test).
Beer contains gluten, so it's off limits. There are so-called gluten-free beers, but they're actually low-gluten. Some of them are claimed to be pretty good, and they're generally safe for most people, but it's best to avoid them during recovery, due to their low gluten content. Our immune system tends to become extra-sensitive for a while when we eliminate gluten, then it later returns to normal sensitivity. Wine is often OK for many of us, if the sulfites and histamine are not a problem for us. Distilled beverages (bourbon, vodka, rum, whiskey, champagne, etc.,) are safe as long as they are not blended back with something that contains gluten (wine coolers are an example of a product usually blended with something that contains gluten). Alcohol is a high-histamine product, however, and it promotes increased intestinal permeability, which are issues that affect many MC'ers. Leaky gut is a prerequisite for food sensitives, which implies that we all have it.
Remember, we have to be very strict with our diet during recovery, but after our gut is able to accomplish enough healing, we can relax a bit on some of the restrictions.
You're very welcome, and best of luck in selecting a diet that works well for you.
Tex
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328
Basically, virtually no one reacts to proteins such as turkey, lamb, goat (cabrito), venison, rabbit, goose, duck, quail, pheasant, etc. Chicken, beef, and pork are usually safe, but not for some of us. Fiber should be minimized and vegetables such as carrots, squash, and green beans should be peeled (if they have a peel) and overcooked. Most of us can tolerate white rice (not brown), corn, and other GF grains, but not everyone, so the safest diet excludes them (at least during recovery if you're going to do an elimination diet instead of ordering an EnteroLab stool test).
Beer contains gluten, so it's off limits. There are so-called gluten-free beers, but they're actually low-gluten. Some of them are claimed to be pretty good, and they're generally safe for most people, but it's best to avoid them during recovery, due to their low gluten content. Our immune system tends to become extra-sensitive for a while when we eliminate gluten, then it later returns to normal sensitivity. Wine is often OK for many of us, if the sulfites and histamine are not a problem for us. Distilled beverages (bourbon, vodka, rum, whiskey, champagne, etc.,) are safe as long as they are not blended back with something that contains gluten (wine coolers are an example of a product usually blended with something that contains gluten). Alcohol is a high-histamine product, however, and it promotes increased intestinal permeability, which are issues that affect many MC'ers. Leaky gut is a prerequisite for food sensitives, which implies that we all have it.
Remember, we have to be very strict with our diet during recovery, but after our gut is able to accomplish enough healing, we can relax a bit on some of the restrictions.
You're very welcome, and best of luck in selecting a diet that works well for you.
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.
Generally when we are healing it is better to avoid alcohol like Tex says but after we have some healing there are some options.
Gluten Dude has some good discussions on the GF beers. There are now some made that have 0 gluten.
https://glutendude.com/eating-out/gluten-free-beer/
https://glutendude.com/alcohol/ultimate ... free-beer/
I like the ciders like Angry Orchard.
Gluten Dude has some good discussions on the GF beers. There are now some made that have 0 gluten.
https://glutendude.com/eating-out/gluten-free-beer/
https://glutendude.com/alcohol/ultimate ... free-beer/
I like the ciders like Angry Orchard.
You're right. Others close to us can be impacted almost as much as we are by this disease. But if your wife is willing to at least eschew gluten along with you, that will be a huge advantage for you because it will eliminate most of the cross-contamination threats to the integrity of your diet (and her health will almost surely also benefit from the diet changes because gluten causes increased intestinal permeability for everyone — it's just much worse for us). Cooking whole foods, from scratch, makes it much easier to avoid the cross-contamination hazard that so many processed foods (even gluten-free products) present.
Confronting the diet head-on can be very intimidating at first. Some people find it easier to work into it a step at a time. Gluten is the main problem, so eliminating gluten first makes sense. After we taste some success with the diet by eliminating gluten, it becomes easier to remove other foods from our diet, one at a time. If (or whenever) you might feel overwhelmed by the challenge, just take life one day at a time to get through the tough spots. There will be good days and there will be bad days. At first the bad days will outnumber the good days, but eventually the bad days will become fewer and farther between as your digestive system heals.
It helps to avoid discouragement if we measure our progress monthly, not daily. And with any luck at all, one day you'll wake up and realize that you feel better than you've felt in years. It's very empowering to realize that we've confronted the beast/disease and conquered it.
Tex
Confronting the diet head-on can be very intimidating at first. Some people find it easier to work into it a step at a time. Gluten is the main problem, so eliminating gluten first makes sense. After we taste some success with the diet by eliminating gluten, it becomes easier to remove other foods from our diet, one at a time. If (or whenever) you might feel overwhelmed by the challenge, just take life one day at a time to get through the tough spots. There will be good days and there will be bad days. At first the bad days will outnumber the good days, but eventually the bad days will become fewer and farther between as your digestive system heals.
It helps to avoid discouragement if we measure our progress monthly, not daily. And with any luck at all, one day you'll wake up and realize that you feel better than you've felt in years. It's very empowering to realize that we've confronted the beast/disease and conquered it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.