Well said, my fellow Potty People!
Yes, Tex, please put this thread wherever it will be best seen and read by newbies.
Love,
Polly
Some Thoughts On Treating Microscopic Colitis
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Susie. Let's hope we progress and begin to heal together too.
This is the most interesting thread, and the info here is super valuable. My son has gone gluten free, and I wish my other kids would do so too.
I have friends who clearly need to do so. I have tried to persuade them that it's important, but they won't give it a try. Your point about being willing to take drugs, but unwilling to try to control problems through diet.
I am bookmarking this thread. It's truly important.
This is the most interesting thread, and the info here is super valuable. My son has gone gluten free, and I wish my other kids would do so too.
I have friends who clearly need to do so. I have tried to persuade them that it's important, but they won't give it a try. Your point about being willing to take drugs, but unwilling to try to control problems through diet.
I am bookmarking this thread. It's truly important.
Wonderful topic, Tex - you are absolutely singing my song. And extraordinarily thoughtful and heartfelt posts from all. I agree so emphatically I don't have a great deal to add, other than my gratitude for the exceptional camaraderie and fellowship here in this wonderful, best corner of the whole Web.
A friend was asking me whether my current food sensitivities might 'wear off' last night, and I said I rather hoped that some might turn out to be transient, but I can be very confident that my genetic gluten sensitivity has been triggered, and that genie won't be going back in the bottle. And she really got it when I added that I don't feel I'm really missing anything - I am sure the bread at that restaurant was good, but if you're not addicted to gluten, it's frankly not all that flavorful a substance, and it sure doesn't have much going for it in terms of nutrition.
I also have friends who live on ibuprofen, or struggle to find the right anti-depressant, or who are moving from naturopath to MD to herbal supplement without much relief of their particular 'issue'... when it would cost nothing and risk nothing to give gluten a complete pass for a few weeks, and see whether it makes any difference. My husband (healthy as an ox) reports that he feels better in multiple ways when he doesn't eat it. I could almost see our houseguests shaking their heads when he said that - like no, no, no, that can't happen. (And then requesting ibuprofen, which I don't stock, because I don't take it - but I also don't need it!)
This whole thread is beautiful, heartfelt and clear - I think it also could be revisited from time to time, as each of us is posting from where we are today, and we are all works in progress.
May our success rates, personal and collective, be even better as we go forward together on this road!
Love,
Sara
A friend was asking me whether my current food sensitivities might 'wear off' last night, and I said I rather hoped that some might turn out to be transient, but I can be very confident that my genetic gluten sensitivity has been triggered, and that genie won't be going back in the bottle. And she really got it when I added that I don't feel I'm really missing anything - I am sure the bread at that restaurant was good, but if you're not addicted to gluten, it's frankly not all that flavorful a substance, and it sure doesn't have much going for it in terms of nutrition.
I also have friends who live on ibuprofen, or struggle to find the right anti-depressant, or who are moving from naturopath to MD to herbal supplement without much relief of their particular 'issue'... when it would cost nothing and risk nothing to give gluten a complete pass for a few weeks, and see whether it makes any difference. My husband (healthy as an ox) reports that he feels better in multiple ways when he doesn't eat it. I could almost see our houseguests shaking their heads when he said that - like no, no, no, that can't happen. (And then requesting ibuprofen, which I don't stock, because I don't take it - but I also don't need it!)
This whole thread is beautiful, heartfelt and clear - I think it also could be revisited from time to time, as each of us is posting from where we are today, and we are all works in progress.
May our success rates, personal and collective, be even better as we go forward together on this road!
Love,
Sara
Hi Sara,
I hate to say this but your friend sounds like me before MC. I ate Advil all day long for nearly 2 years. Even took Advil PM to sleep. Went to an herbalist to get help there (nothing helped). Was on antidepressants for the last couple of years(that was depressing in it of it self). Went to an acupuncturist to get me out of pain (that just drained my pocket book).
I cant believe from where I was 8 months till now. What a difference. I never thought I would ever see the light at the end of the tunnel. I see it now and cant wait till it shines on me again.
Love Robin
I hate to say this but your friend sounds like me before MC. I ate Advil all day long for nearly 2 years. Even took Advil PM to sleep. Went to an herbalist to get help there (nothing helped). Was on antidepressants for the last couple of years(that was depressing in it of it self). Went to an acupuncturist to get me out of pain (that just drained my pocket book).
I cant believe from where I was 8 months till now. What a difference. I never thought I would ever see the light at the end of the tunnel. I see it now and cant wait till it shines on me again.
Love Robin
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
As much as I hope to convince my family to give a GF diet a good college try, I know there's a good chance they will just look at me like I've grown two heads (the way many of us looked at people with dietary issues before we became them!). I'm hoping that my success over time will be more of a testimony to them than what I say, because I definitely feel much better. I also tried very hard, while we were on the cruise together, to be positive, and to express appreciation to the servers and chef who went out of their way to accommodate me. I don't want to be a pain, but I think there's a way to make my needs clear in a nice way. And while my husband and two younger kids are devastated at the idea of GF, I think daughter #1 might be more receptive to it. She is experiencing the headaches, fatigue, depression, and (I suspect) tummy issues that can go along with a gluten sensitivity, and she might be desperate enough to give it a try.
Susie and Lesley, I'm sorry that the path to wellness has not been as clear-cut for you as it was for some of us! It seems so much harder to figure it out when there are multiple things going on. I hope you will take encouragement from some others on this forum who have fought the same battle--and WON--even if it takes longer that you'd hoped! Wishing you both a healthy new year!
Susie and Lesley, I'm sorry that the path to wellness has not been as clear-cut for you as it was for some of us! It seems so much harder to figure it out when there are multiple things going on. I hope you will take encouragement from some others on this forum who have fought the same battle--and WON--even if it takes longer that you'd hoped! Wishing you both a healthy new year!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
One thing I think might be helpful for those of us still struggling would be to know how others figured out "other" food sensitivities. I should know, because I was able to figure out wheat, dairy, soy and eggs, on my own, but the others seem somewhat elusive and I am not sure where to start. I did the Enterolab testing, but I am not sure how accurate the "other antigenic foods" results are. Have other people had success by eliminating based on these results? I am really not convinced that I am allergic to chicken and almonds. Maybe it is just that I don't want to believe it, but potatoes (which I showed no sensitivity to) seem to bother me more than almonds! Does anyone have tips for me and possible others struggling to figure it out? Thanks so much for the support everyone! Susie
Susie,
I think your experience is the most important guide. To get real confidence from your own testing, the ideal method would be to eat only things you are sure of, until you are feeling pretty confident that you're stable (because some reactions seem to happen just because our systems are so inflamed - in the beginning I was reacting to everything, including things I now can eat any day of the week with no problem). Then you try a food, and keep a journal of what you've tried and how you feel afterwards, the next day... And the Enterolab 'antigenic foods' panel is meant to help you prioritize which foods you go for when. However, not all reactions are based on IgA antibodies, which is what those tests measure... so it's a very complex picture!
The reason for getting to a reasonable "baseline" is because against the background 'noise' of reacting constantly, it's very hard to be sure whether it was a particular food, or just a little less sleep, or more stress, that has thrown us off course. (Also, of course, because we feel much better when we get to this state I'm calling baseline - meaning it may not be 'perfect' but it's much more like normal life, and less like the darkest tunnel of MC!)
Hope this helps. FOR SURE - if you eat something and it makes you feel awful, I would believe you above the Enterolab results!
I think your experience is the most important guide. To get real confidence from your own testing, the ideal method would be to eat only things you are sure of, until you are feeling pretty confident that you're stable (because some reactions seem to happen just because our systems are so inflamed - in the beginning I was reacting to everything, including things I now can eat any day of the week with no problem). Then you try a food, and keep a journal of what you've tried and how you feel afterwards, the next day... And the Enterolab 'antigenic foods' panel is meant to help you prioritize which foods you go for when. However, not all reactions are based on IgA antibodies, which is what those tests measure... so it's a very complex picture!
The reason for getting to a reasonable "baseline" is because against the background 'noise' of reacting constantly, it's very hard to be sure whether it was a particular food, or just a little less sleep, or more stress, that has thrown us off course. (Also, of course, because we feel much better when we get to this state I'm calling baseline - meaning it may not be 'perfect' but it's much more like normal life, and less like the darkest tunnel of MC!)
Hope this helps. FOR SURE - if you eat something and it makes you feel awful, I would believe you above the Enterolab results!
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
I will second Sara on this one--start off with just one suspect, and journal EVERYTHING. Sometimes reactions take time to show up, or they may be more subtle, or they may include non-digestive symptoms. I have a subtle reaction to gluten compared to some of my other intolerances, but I believe I got glutened the other day because I wrote down how I felt the last time (felt like something was crawling around in my stomach!). Now, if I have a different set of symptoms, I'll recognize it because I've narrowed down what certain foods do to me (casein does the battery acid thing, MSG gives me a raging headache, potatoes=bloating and terrific stomach cramps and D the next day...)
It takes time to figure it out, but the more diligent you are in journaling (and the more slowly you introduce new foods), the easier it will be.
It takes time to figure it out, but the more diligent you are in journaling (and the more slowly you introduce new foods), the easier it will be.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Susie,
You are right on - it takes amazing detective work to tease out multiple sensitivities by using the elimination diet. I found most of mine over 10 years using trial and error. However, it wasn't until I did the MRT (mediated release test) this past year that I truly discovered all of them.
I never would have suspected carrots, yellow squash, celery, cucumber, lamb, pork, raspberries, etc. without that test. Plus, MRT gives you an good structure for testing foods and seeing results - for the first week you start with just a few of your least reactive foods and then you add only one new food each day. Then, over the next month, you keep adding adding foods one at a time.
Hugs,
Polly
You are right on - it takes amazing detective work to tease out multiple sensitivities by using the elimination diet. I found most of mine over 10 years using trial and error. However, it wasn't until I did the MRT (mediated release test) this past year that I truly discovered all of them.
I never would have suspected carrots, yellow squash, celery, cucumber, lamb, pork, raspberries, etc. without that test. Plus, MRT gives you an good structure for testing foods and seeing results - for the first week you start with just a few of your least reactive foods and then you add only one new food each day. Then, over the next month, you keep adding adding foods one at a time.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Sara, Cynthia, Polly, You guys are all great! I will start a journal and see what foods I tolerate best. It is very comforting to believe I may not have to cut out everything forever. I think I now know what set me off this time. I had a small glass of wine last Wednesday. I felt fine on Thursday and Friday so I thought it had been okay. Saturday left me feeling like I got hit by a truck, and it was until yesterday-two days into major probiotics, that I started feeling normal again. Definitely writing that one down! Again, I can't thank you enough for the guidance and encouragement! Susie
Thanks guys, for your encouragement and help.
This morning I have pain on my left medial aspect, NOT front side, but below my arm if I lay it against my body. My front is SO bloated and extended it's horrible. The discomfort of C is terrible after nearly a week. I have been taking Miralax, senna, stool softeners, you name it. I am getting gurgles, but I think they are from all the above stuff rather than from MC.
It's so hard to know what's what with C. When I get a D shaped response I know exactly what did it. But with C I don't even know if it's an MC response.
This morning I have pain on my left medial aspect, NOT front side, but below my arm if I lay it against my body. My front is SO bloated and extended it's horrible. The discomfort of C is terrible after nearly a week. I have been taking Miralax, senna, stool softeners, you name it. I am getting gurgles, but I think they are from all the above stuff rather than from MC.
It's so hard to know what's what with C. When I get a D shaped response I know exactly what did it. But with C I don't even know if it's an MC response.
I'm certainly hearing more gluten-free backlash nowadays, to the tune of "how come everyone with any health problem blames it all on gluten now?" People are getting fed up with the villification of their "staff of life." 
I think, dare I say, that I've finally reached remission after 1.5 years on the GF/DF/mostly soy free diet. I came close in recent months, but discovering my sesame intolerance and starting acupuncture really seemed to help me get over the final hurdle (continued soft BMs). In the last 3 weeks I've had near perfect normans, usually 2 days apart, and no tummy trouble. I've eaten a varied diet with much more fiber and salads than I'm used to, and I'm still fine.
I'm in awe and hope I can maintain this long-term.
I do believe it takes lots of patience and dedication to reach remission with diet alone, but ultimately it's the best way to sustain long-term. I'm also optimistic that by achieving remission through diet, we are also addressing other hidden forms of inflammation throughout the body, and ultimately may be preventing cancer, autoimmune diseases, etc. through these efforts. I may be fooling myself, but this faith keeps me on track.
In a way I think we are the lucky ones -- MC came into our lives to sound the alarm that we were on the wrong path, that our health is in jeopardy. Others get this wake-up call from Cancer, Lupus, Ulcerative Colitis and other more serious, and often deadly, diseases. We have the power to heal ourselves, and can enjoy a full life without disability once we get there. All the sacrifices we make now -- they are all worth it.
I think, dare I say, that I've finally reached remission after 1.5 years on the GF/DF/mostly soy free diet. I came close in recent months, but discovering my sesame intolerance and starting acupuncture really seemed to help me get over the final hurdle (continued soft BMs). In the last 3 weeks I've had near perfect normans, usually 2 days apart, and no tummy trouble. I've eaten a varied diet with much more fiber and salads than I'm used to, and I'm still fine.
I'm in awe and hope I can maintain this long-term. I do believe it takes lots of patience and dedication to reach remission with diet alone, but ultimately it's the best way to sustain long-term. I'm also optimistic that by achieving remission through diet, we are also addressing other hidden forms of inflammation throughout the body, and ultimately may be preventing cancer, autoimmune diseases, etc. through these efforts. I may be fooling myself, but this faith keeps me on track.
In a way I think we are the lucky ones -- MC came into our lives to sound the alarm that we were on the wrong path, that our health is in jeopardy. Others get this wake-up call from Cancer, Lupus, Ulcerative Colitis and other more serious, and often deadly, diseases. We have the power to heal ourselves, and can enjoy a full life without disability once we get there. All the sacrifices we make now -- they are all worth it.
Z,
Congratulations - you've done a lot of excellent legwork and thinking, and you deserve every minute of feeling great that you've created through your efforts.
Long may your remission last! And thank you for expressing your optimism so clearly, about reducing our long-term risk for other health problems. This is my hope, as well, and I agree with you - in a strange way, we are the lucky ones.
As far as the backlashers go, I'm not of a mind to explain or justify myself. I don't ask why they eat things that make them ill, and I don't explain why I do not ;)
What a wonderful way to end the year, and look forward to 2012.
S
Congratulations - you've done a lot of excellent legwork and thinking, and you deserve every minute of feeling great that you've created through your efforts.
Long may your remission last! And thank you for expressing your optimism so clearly, about reducing our long-term risk for other health problems. This is my hope, as well, and I agree with you - in a strange way, we are the lucky ones.
As far as the backlashers go, I'm not of a mind to explain or justify myself. I don't ask why they eat things that make them ill, and I don't explain why I do not ;)
What a wonderful way to end the year, and look forward to 2012.
S