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Hi everyone - it's been ages since I've posted anything here, but you all are never far from my heart!
Here's what's going on: I've been (mostly) managing this whole colitis thing for years through diet. I'm avoiding gluten, dairy, soy, corn, onions, garlic, bananas, sweet potatoes and most fruits, except for berries and apples. Every so often I eat soy sauce at my favorite sushi place or have a little bit of sauteed onion with my greens. In other words, I mostly avoid everything I think I shouldn't eat, but occasionally I eat something on my avoid list. Except for my reactions to the allium family, which are almost immediate, I really don't get any reactions to cheating. No cramping, no D, etc. Except every few months everything will start going straight through me - and there's never any warning. It will literally be overnight. When this happens, I start eating only rice, chicken, eggs, and carrots. It's now been 3 or 4 weeks of this kind of diet (occasionally stealing some of my husband's dark chocolate!), and I can't seem to nip it in the bud. My concern is that my husband and I are trying to conceive, and I'm certainly not getting the nutrients I need. If you were in my position, would you introduce medication into the mix? I hate it, and am mostly anti-western medicine in most cases, but there may be other factors here to consider. Such as how my diet might affect our eventual child. I can't figure out if there's something I need to add to my list of avoidances that's causing my frequent flares, but I'd really like to put an end to this! Thoughts from this wise crowd? Thanks!
Stumped
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Beth,
Sorry to hear that you're having a persistent flare. Of course, meds and their possible effects on pregnancy, are a tricky issue. The labels on most suitable meds, recommend checking with your doctor before taking them, in that type of situation. Of course, the doctor will almost always say it's OK to take them, but the fact that these are often uncharted waters, makes that a tough choice.
IMO, it's best to make sure that you're covering all the bases, (which you need to do anyway, if you're planning such an event), by taking the appropriate vitamins, in adequate amounts - especially vitamin D, but also the "B" vitamins, (particularly B-12, B-9, and B-6), and a few others. As you are probably aware, gluten-sensitivity can adversely affect fertility, (thought the effect may be slight, in your case, or even negligible, since you've been following a GF diet for so long). If you're able to become pregnant, there is at least a 50-50 chance that the additional hormones produced during pregnancy will alleviate your MC symptoms during gestation, and probably until lactation ceases, so that would make life easier for a while.
In the meantime, you might consider mediator release testing, (MRT), if you can spare the cash, or if your insurance will pay for it. It just requires a simple blood draw, to be sent to their lab, and many members here have found it to be very helpful for tracking down food sensitivities which are not covered by the main Enterolab tests. Here are some discussions about it, if you're not familiar with it. If you feel that you might want to try it, Mary Beth can recommend a dietitian in your area who is qualified to work with the program requirements.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
Best of luck with ending your flare, and creating a new bundle of joy.
Tex
P. S. Are you by any chance taking any PPIs, SSRIs, bisphosphonates, statins, HRT, etc., any of which can trigger an MC flare for some individuals?
Sorry to hear that you're having a persistent flare. Of course, meds and their possible effects on pregnancy, are a tricky issue. The labels on most suitable meds, recommend checking with your doctor before taking them, in that type of situation. Of course, the doctor will almost always say it's OK to take them, but the fact that these are often uncharted waters, makes that a tough choice.
IMO, it's best to make sure that you're covering all the bases, (which you need to do anyway, if you're planning such an event), by taking the appropriate vitamins, in adequate amounts - especially vitamin D, but also the "B" vitamins, (particularly B-12, B-9, and B-6), and a few others. As you are probably aware, gluten-sensitivity can adversely affect fertility, (thought the effect may be slight, in your case, or even negligible, since you've been following a GF diet for so long). If you're able to become pregnant, there is at least a 50-50 chance that the additional hormones produced during pregnancy will alleviate your MC symptoms during gestation, and probably until lactation ceases, so that would make life easier for a while.
In the meantime, you might consider mediator release testing, (MRT), if you can spare the cash, or if your insurance will pay for it. It just requires a simple blood draw, to be sent to their lab, and many members here have found it to be very helpful for tracking down food sensitivities which are not covered by the main Enterolab tests. Here are some discussions about it, if you're not familiar with it. If you feel that you might want to try it, Mary Beth can recommend a dietitian in your area who is qualified to work with the program requirements.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
Best of luck with ending your flare, and creating a new bundle of joy.
Tex
P. S. Are you by any chance taking any PPIs, SSRIs, bisphosphonates, statins, HRT, etc., any of which can trigger an MC flare for some individuals?
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 Beth,
Tex is right on target recommending MRT. After managing my MC with diet alone for 10 years, it enabled me to fine-tune it. Check out my sensitivities under my avatar to the left of this post. I never would have guessed many of these sensitivities without MRT.
It is well worth the money and effort, IMHO. Good luck! Those of us who have gone this route will be very happy to help you if you need it.
Hugs,
Polly
Tex is right on target recommending MRT. After managing my MC with diet alone for 10 years, it enabled me to fine-tune it. Check out my sensitivities under my avatar to the left of this post. I never would have guessed many of these sensitivities without MRT.
It is well worth the money and effort, IMHO. Good luck! Those of us who have gone this route will be very happy to help you if you need it.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I just reread my post and noticed that I recommended "moderator release testing" instead of "mediator release testing". 
Sorry about that.
I've edited the post to correct the mistake.
Tex
Sorry about that.
I've edited the post to correct the mistake.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.
Beth,
I wonder if your every 3 month flare could be associated with factors other than food? Have stress levels changed? Are you being exposed to more environmental chemicals on the job, home or elsewhere? Are you sleeping enough? I have autoimmune complexes coarsing through my veins with no identifiable disease yet, except MC, and I'm convinced that non-food triggers also get these immune complexes activated at times. Of course my menstrual cycle also has a profound effect on my MC symptoms too.
Hopefully pregnancy will help, but don't be too optimistic about the post-partum period. The immune system surge post-pregnancy and while breastfeeding is when all my autoimmune issues developed. I had an itchy, sun-sensitive autoimmune rash for the entire 12 months I breastfed my son. Luckily I had no issues after my daughter. I breastfed her for 3 years, and developed obvious MC symptoms in that third year.
I wonder if your every 3 month flare could be associated with factors other than food? Have stress levels changed? Are you being exposed to more environmental chemicals on the job, home or elsewhere? Are you sleeping enough? I have autoimmune complexes coarsing through my veins with no identifiable disease yet, except MC, and I'm convinced that non-food triggers also get these immune complexes activated at times. Of course my menstrual cycle also has a profound effect on my MC symptoms too.
Hopefully pregnancy will help, but don't be too optimistic about the post-partum period. The immune system surge post-pregnancy and while breastfeeding is when all my autoimmune issues developed. I had an itchy, sun-sensitive autoimmune rash for the entire 12 months I breastfed my son. Luckily I had no issues after my daughter. I breastfed her for 3 years, and developed obvious MC symptoms in that third year.
Thanks for adding your experience here, Polly. I've been reading about MRT testing and noticing that you'd found some wonderful relief from your experience. I'd always remembered you as the lovely doctor who managed perfectly with diet . . . so I was heartened to hear that it wasn't just me who goes through these flares. I made an appointment today to see a certified LEAP nutritionist on the 15th, and hopefully the testing will happen shortly after that.
Zizzle - my sense is that my flares are mostly diet related. I start feeling fantastic and then I sneak some of my husband's feta cheese or think it'll be safe to try sauteed onions, and it just never works. I have very little stress in my life. I'm newly married and really, really happy, probably the happiest I've ever been. I'm both thrilled by the MRT testing and dreading it, because I know it will mean taking out a LOT of foods. "~
Tex - it's all good. :) You have no idea how much I appreciate your knowledge and incredibly generous offering of time and support. I always feel so relieved to know that whenever I have an issue with MC that I can always turn to this website. Thank you, thank you.
On my way to order Freeda vitamins right now!
Zizzle - my sense is that my flares are mostly diet related. I start feeling fantastic and then I sneak some of my husband's feta cheese or think it'll be safe to try sauteed onions, and it just never works. I have very little stress in my life. I'm newly married and really, really happy, probably the happiest I've ever been. I'm both thrilled by the MRT testing and dreading it, because I know it will mean taking out a LOT of foods. "~
Tex - it's all good. :) You have no idea how much I appreciate your knowledge and incredibly generous offering of time and support. I always feel so relieved to know that whenever I have an issue with MC that I can always turn to this website. Thank you, thank you.
On my way to order Freeda vitamins right now!
Beth,
I would encourage you to switch your vocabulary, away from the way food-fashion-media people talk about foods... you don't really 'sneak' a piece of cheese, because there's no food police that might catch you. Our culture is totally full of that kind of language. All kinds of programs talk about "safe cheats" or "legal cheats" - and it's just stinkin' thinkin', whether the goal is remission and health, or weight loss, or - whatever. It's not about rules and cheating and rigidity and sneaks... it's about a vital, joyful part of life, food. Anything that makes you sick... is not your friend. (This kind of language does highlight the addictive nature of so much about food, though, doesn't it? Rest assured, the food processors and marketers loooove that language - and use it in their ads - because it means they are succeeding at separating people from their money, against their own better judgment.)
Aside from the health consequences, there are reasons to be kind of diligent about what we eat while we're trying to heal - like learning what we really can and cannot eat. This can change over time - maybe sauteed onions will be back for you, once you're in stable remission (and maybe not). Other than the Big Baddies of food, we are all different. And of course, given your important life goal, you really want not only to be as strong and healthy as possible, but hopefully you'll be modeling rational and sane eating behavior for your children, so they don't grow up to waste a fortune on diet fads and magazines that promise a fast way into a bathingsuit by beach time
This is kind of a pet issue of mine, and I apologize if I'm kind of overstepping (and am probably also overstating how big of an issue this is for your personally). I feel really lucky that I grew up eating real food, with sweets/snacks neither forbidden nor a constant factor. I watch people trying to change long habits of eating and struggling - and I know this MC path would be much harder if my habits were different.
Since you're in such a happy time, you're well positioned to seize the reins of this MC beast and steer it into remission, and enjoy your healthy life! I wish you luck with all your goals and much joyful, health-supporting dining, on your path to healing and motherhood,
Sara
I would encourage you to switch your vocabulary, away from the way food-fashion-media people talk about foods... you don't really 'sneak' a piece of cheese, because there's no food police that might catch you. Our culture is totally full of that kind of language. All kinds of programs talk about "safe cheats" or "legal cheats" - and it's just stinkin' thinkin', whether the goal is remission and health, or weight loss, or - whatever. It's not about rules and cheating and rigidity and sneaks... it's about a vital, joyful part of life, food. Anything that makes you sick... is not your friend. (This kind of language does highlight the addictive nature of so much about food, though, doesn't it? Rest assured, the food processors and marketers loooove that language - and use it in their ads - because it means they are succeeding at separating people from their money, against their own better judgment.)
Aside from the health consequences, there are reasons to be kind of diligent about what we eat while we're trying to heal - like learning what we really can and cannot eat. This can change over time - maybe sauteed onions will be back for you, once you're in stable remission (and maybe not). Other than the Big Baddies of food, we are all different. And of course, given your important life goal, you really want not only to be as strong and healthy as possible, but hopefully you'll be modeling rational and sane eating behavior for your children, so they don't grow up to waste a fortune on diet fads and magazines that promise a fast way into a bathingsuit by beach time
This is kind of a pet issue of mine, and I apologize if I'm kind of overstepping (and am probably also overstating how big of an issue this is for your personally). I feel really lucky that I grew up eating real food, with sweets/snacks neither forbidden nor a constant factor. I watch people trying to change long habits of eating and struggling - and I know this MC path would be much harder if my habits were different.
Since you're in such a happy time, you're well positioned to seize the reins of this MC beast and steer it into remission, and enjoy your healthy life! I wish you luck with all your goals and much joyful, health-supporting dining, on your path to healing and motherhood,
Sara
Elizabeth,
I'm looking forward to MRT testing, too. Looks like we'll be part of the "Class of 2011" together (along with Zizzle and Mary Beth).
Don't kick yourself. Someone once said to me, "fasting is easy - eating is hard." I thought that was the dumbest thing I'd ever heard, but now I know what she was talking about!
--Sara
I'm looking forward to MRT testing, too. Looks like we'll be part of the "Class of 2011" together (along with Zizzle and Mary Beth).
Don't kick yourself. Someone once said to me, "fasting is easy - eating is hard." I thought that was the dumbest thing I'd ever heard, but now I know what she was talking about!
--Sara