Visit the Microscopic Colitis Foundation Website
It's been a month since my flare brought MC back front and center in my life, and I thought I'd think "out loud" about how things are going, and share my next steps.
I'm doing fine on my limited diet. A couple of times I've eaten things that have been working for me, then afterward felt strange (pale, woozy, one hive!, heart rate up). I don't know whether it's too soon to know about specific ingredients, while the healing is ongoing, with its ups and downs, or maybe bananas are not my friend after all. I'm dropping the store-bought applesauce that got me through the first week (vitamin C is the only other ingredient, Enterolab will let me know if corn should be off my list).
No noteworthy D for almost 2 weeks! I'm now taking 1 or 2 pepto a day, which may be a security blanket. (Hm, timing of the pepto might be the difference when I eat a familiar food and feel odd.) I noticed increased BM frequency yesterday, but no cramping. Not really seeing Norman either - more like a cousin of Norman's, with a family resemblance. I'm generally more energized - not always. Less brain fog. (I think - maybe I'm not the best judge of that.)
I've ordered Enterolab tests, to be sent to a friend. She'll send the kit to me (or hand it to me at our next 'play date' in a little over a week, if the timing works out). This gets around the NYState rules about sending/receiving tests directly between patients and labs.
I've made an appointment with Dr. Peter Green at the Celiac Center at Columbia for late July. And I looked up Dr. Mark Chapman in NYC, and I think he's the GI doc I saw in 1997! I am now requesting my original pathology report from the microfilm archives, and hoping my former internist has a copy slightly less deeply buried. Even if it surfaces, it may not shed a great deal of light, but at least it's something I could bring to my next appointment. I don't relish the idea of walking into an expert's office and claiming to have CC without any record of the biopsy/Dx.
I bet even with the delay of getting the records out of the vault, I will be able to see Dr. Chapman before my July appointment date with Dr. Green. I did like him in 1997, and he's got a PP member as a fan, which is a great sign - thanks, Barbara!. I am hopeful I'll be moving along in my healing, and won't "need" much doctor-tending - but at some point I should have my overdue 50yo colonoscopy, and I would like to find out whether I have mast cell issues.
I wonder whether gut healing is sort of like a snake molting, only inside out, and with a lot more layers and time involved. My skin on my fingers started peeling with my reaction in March, but are getting better, so maybe that's a sign that the long slow internal process is gradually underway.
I'm eating rice once/week, and no other grains, no legumes (yet?), no dairy. Still have those 'uh oh' feelings once in a while - stomach gurgling, a stomach ache that might be not stomach at all, but - small intestine? But no cramping, no D, YAY.
I'm possibly going a little overboard on the diet restrictions, but I seem to be more patient about waiting to eat particular foods than I am about waiting for relief and healing. The initial quick weight loss seems to have stopped.
I'm considering Histame, but not sure how to know when to take it, or how to tell whether it might be helping. That's one of my priority topics to research and ponder.
When I first had MC, I was sick for months before Dx, and months thereafter of ups and downs on Asacol, before remission which seems to have been spontaneous(?). This time, I've come so far in one month, despite being over a decade older (and probably at least a little more gluten-damaged).
For this and for so much else, I would like to thank you all, in a thousand ways.
Tex, I want to thank you first and hugely as our gracious host here, and as well for your encyclopedic generously shared knowledge, combined with real thoughtfulness and the courage to put your guesses (wild or otherwise) out there and label them as such. In addition, I deeply appreciate your specific advice and encouragement to me, as to so many others. Your approach has not only helped me to be better informed and make better decisions, but it's made me more open and curious, and less shut-down and panicked, as I think back on my symptoms and history, and forward toward remission.
Polly and Mary Beth, thank you so much for sharing your professional experience and your personal caring and kindness with so many of us.
I would like to huge and thank each and every one of you who has reached out to me, but I'm getting slightly weepy - I am looking forward to our continued comradeship on this journey.
All my best to each of us for improving and continuing health,
Sara
Where I think I am now, and headed next
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Sara,
Norman's cousin is a step in the right direction
Histame is taken before meals although I have heard that some think it works better after meals. I have yet to try it so I can't comment on that. You definitley sound like you have mast cell issues going on. I know that rapid heartrate feeling very well and it is very unsettling. You could have your doc do some testing (serum tryptase, urine histamine and urine prostaglandin D2), as well as biopsies on your next colonoscopy
Last I heard about Peter Green was that he didn't buy into non-celiac gluten sensitivity - I don't know where he stands on the issue now since even Dr. Fasano is recognizing it. He's quite famous in the celiac circles and he's Elizabeth Hasselbeck's doctor, but I think he's also been instrumental in keeping things status quo and blackballing Dr. Fine - don't be surprised if he rolls his eyes at your Enterolab results.
Speaking of Enterolab, are they now testing for corn? That is great if the new tests are now available. Dr. Fine has talked about them for a while now but I haven't heard that they were being used. Please let us know what is now being tested.
Sounds like you are doing what you can do right now. Hopefully Norman will arrive soon.
Love,
Mary Beth
Norman's cousin is a step in the right direction
Histame is taken before meals although I have heard that some think it works better after meals. I have yet to try it so I can't comment on that. You definitley sound like you have mast cell issues going on. I know that rapid heartrate feeling very well and it is very unsettling. You could have your doc do some testing (serum tryptase, urine histamine and urine prostaglandin D2), as well as biopsies on your next colonoscopy
Last I heard about Peter Green was that he didn't buy into non-celiac gluten sensitivity - I don't know where he stands on the issue now since even Dr. Fasano is recognizing it. He's quite famous in the celiac circles and he's Elizabeth Hasselbeck's doctor, but I think he's also been instrumental in keeping things status quo and blackballing Dr. Fine - don't be surprised if he rolls his eyes at your Enterolab results.
Speaking of Enterolab, are they now testing for corn? That is great if the new tests are now available. Dr. Fine has talked about them for a while now but I haven't heard that they were being used. Please let us know what is now being tested.
Sounds like you are doing what you can do right now. Hopefully Norman will arrive soon.
Love,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
First let me say, that NO, Enterolab isn't testing for corn. That's my little mental block.. I added on the soy/yeast/EGGS test, and I keep 'forgetting' that eggs might be an issue. Sorry about that.
Thank you so much for this encouraging and detailed response. I will add those tests to my request list - perhaps my PCP will be open to ordering them. Your vote that I should suspect mast cell issues (which I'm just beginning to understand) means a lot to me. Do you think it's jumping the gun to try Histame, before doing the testing you mention?
I initially had reservations about Dr. Green, precisely because he is so famous in celiac circles, and because in general 'celebrity' seems like a huge distraction. (In NYC, people seem to feel special if their doctor takes no insurance - Dr. Green doesn't accept mine - and has many months of waiting time for an appintment. I guess I'm not a true New Yorker in this regard.) But my appointment date is so far away, I have time to get my ducks in a row, and perhaps re-meet Dr. Chapman, either with or without my resurrected records from ancient history. If that goes well, I can cancel my Dr. Green appointment in plenty of time, and I'm sure they will fill the slot. I almost asked Dr. Green's office staff about his thoughts on MC and diet and gluten, but thought better of getting off on the wrong foot.I'm glad I made the appointment - it sort of jumpstarted me. My instinct is to do this myself, and I may be successful in this approach. But I may not; and anyway, I hope to establish a good relationship with a wonderful gastroenterologist for the long haul.
As long he doesn't roll his eyes at *me* I can handle him having his own opinion about the methods of others. I am genuinely curious as to how someone doubting the validity of Enterolab testing would explain the presence of the very same target substances in stool that they're looking for (and sometimes/not always finding) in blood. Do you know whether there's anywhere online where Dr. Fasano (or someone likeminded) has explained their quarrel with his findings? In conjunction with feeling worse with gluten and feeling better GF, it seems like a slam-dunk from the patient's point of view - don't eat that.
I was really surprised about the fast heartbeat (sometimes a slight flush-y feeling, too). I really thought I had had the exact same meal for breakfast and lunch. But I bet I missed something. Also, I had a minor cat scratch the other day, and was feeling pretty smug that it caused very little swelling or itching, and healed faster than usual. I was thinking that my 'clean' diet had helped with that. But it's possible that my sensitivity got heightened by the scratch. Or, if my immune system is confused enough, it's possible it under-reacted to the cat scratch in the first place. (Confused speculation.)
Anyway - thanks again very, very much! I am welcoming Norman's cousin ;)
All my best,
Sara
First let me say, that NO, Enterolab isn't testing for corn. That's my little mental block.. I added on the soy/yeast/EGGS test, and I keep 'forgetting' that eggs might be an issue. Sorry about that.
Thank you so much for this encouraging and detailed response. I will add those tests to my request list - perhaps my PCP will be open to ordering them. Your vote that I should suspect mast cell issues (which I'm just beginning to understand) means a lot to me. Do you think it's jumping the gun to try Histame, before doing the testing you mention?
I initially had reservations about Dr. Green, precisely because he is so famous in celiac circles, and because in general 'celebrity' seems like a huge distraction. (In NYC, people seem to feel special if their doctor takes no insurance - Dr. Green doesn't accept mine - and has many months of waiting time for an appintment. I guess I'm not a true New Yorker in this regard.) But my appointment date is so far away, I have time to get my ducks in a row, and perhaps re-meet Dr. Chapman, either with or without my resurrected records from ancient history. If that goes well, I can cancel my Dr. Green appointment in plenty of time, and I'm sure they will fill the slot. I almost asked Dr. Green's office staff about his thoughts on MC and diet and gluten, but thought better of getting off on the wrong foot.I'm glad I made the appointment - it sort of jumpstarted me. My instinct is to do this myself, and I may be successful in this approach. But I may not; and anyway, I hope to establish a good relationship with a wonderful gastroenterologist for the long haul.
As long he doesn't roll his eyes at *me* I can handle him having his own opinion about the methods of others. I am genuinely curious as to how someone doubting the validity of Enterolab testing would explain the presence of the very same target substances in stool that they're looking for (and sometimes/not always finding) in blood. Do you know whether there's anywhere online where Dr. Fasano (or someone likeminded) has explained their quarrel with his findings? In conjunction with feeling worse with gluten and feeling better GF, it seems like a slam-dunk from the patient's point of view - don't eat that.
I was really surprised about the fast heartbeat (sometimes a slight flush-y feeling, too). I really thought I had had the exact same meal for breakfast and lunch. But I bet I missed something. Also, I had a minor cat scratch the other day, and was feeling pretty smug that it caused very little swelling or itching, and healed faster than usual. I was thinking that my 'clean' diet had helped with that. But it's possible that my sensitivity got heightened by the scratch. Or, if my immune system is confused enough, it's possible it under-reacted to the cat scratch in the first place. (Confused speculation.)
Anyway - thanks again very, very much! I am welcoming Norman's cousin ;)
All my best,
Sara
Sarah,
This is just my opinion, of course, but I believe that the primary "bone of contention" between the elite of the GI medical community, and Dr. Fine, is centered on his professional demeanor, (or their misguided perception of his lack, thereof). I get the impression that they view him as a bearded, guitar-pickin' hippie in a white coat, who, broke with convention, set up a website, and went straight to the consumers with his testing, rather than to kiss any butts among his peers, as has so long been the custom.
They make a concerted effort to portray any doctor who chooses to practice through an internet website, as some sort of snake oil salesman, (which, of course, is true, in some cases), but strangely, the last time I looked, every major hospital and clinic, (and indeed, every doctor with any aspirations to celebrity), all have their own website, these days. 
Talk about the pot calling the kettle black.
But that's just my opinion, and maybe I'm just jumping to the wrong conclusions, based on what appears to me to be petty professional snobbery on their part.
By the way, thank you for the kind words, but as you are surely aware - it's easy to seem gracious, when you're surrounded by winners, so I'm just lucky.
Tex
This is just my opinion, of course, but I believe that the primary "bone of contention" between the elite of the GI medical community, and Dr. Fine, is centered on his professional demeanor, (or their misguided perception of his lack, thereof). I get the impression that they view him as a bearded, guitar-pickin' hippie in a white coat, who, broke with convention, set up a website, and went straight to the consumers with his testing, rather than to kiss any butts among his peers, as has so long been the custom.
They make a concerted effort to portray any doctor who chooses to practice through an internet website, as some sort of snake oil salesman, (which, of course, is true, in some cases), but strangely, the last time I looked, every major hospital and clinic, (and indeed, every doctor with any aspirations to celebrity), all have their own website, these days. Talk about the pot calling the kettle black.But that's just my opinion, and maybe I'm just jumping to the wrong conclusions, based on what appears to me to be petty professional snobbery on their part.
By the way, thank you for the kind words, but as you are surely aware - it's easy to seem gracious, when you're surrounded by winners, so I'm just lucky.
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.
That snobbery thing kind of works in reverse for me. I had never heard of Dr. Green's celebrity patient - not that I have anything against her, her fame just seems irrelevant to the question at hand... which in my mind, is all about me ;). I really like that Dr. Fine is generous with his thinking. And he's as entitled to his guitar strumming as I am to my little quirks and interests.
Of course, if Dr. Fine is right, then a lot of very prestigious people have been wrong, for a long time. Throwing out the old/outdated in favor of the new understanding is one of the swell things about science. But you have to be more interested in science more than in prestige. I bet many people start out thrilled to be proven wrong, because it advances the whole endeavor... but that wears off when they have more to lose (position, prestige, reputation, funding, etc.)
I cannot tell whether the people who don't like what Dr. Fine is saying believe that he is wrong about his findings, or about what they mean. Do they disagree that he has found antigliadin IgA antibodies in stool in patients who didn't have them in their blood? Or do they think that, even if he did find that, it doesn't mean what he thinks it means? And if the latter, do they think it means something else?
The length of time to diagnosis is a huge problem for celiacs and MC patients, both in terms of the suffering of living with symptoms and in terms of cumulative damage to health. It looks as though Enterolab testing could save a lot of people a lot of unnecessary pain.
I'm not knocking Dr. G. or anyone else. But I expect I might get helpful information from Enterolab three months before my doctor appointment date, and am optimistic to start feeling better and move onto LEAP/MRT.
Here in NYC I've heard people almost seeming to brag that their awesome doctor doesn't accept *any* insurance. Well, why the heck not? To me that just says "I can't be bothered" - not really the kind of world view I'm seeking. I know it's annoying to deal with, but it's a real difference-maker to most patients - a much bigger difference to me people than expensive decor or a high-status address.
My goodness, one rant just leads right to another with me these days...
Sara
Of course, if Dr. Fine is right, then a lot of very prestigious people have been wrong, for a long time. Throwing out the old/outdated in favor of the new understanding is one of the swell things about science. But you have to be more interested in science more than in prestige. I bet many people start out thrilled to be proven wrong, because it advances the whole endeavor... but that wears off when they have more to lose (position, prestige, reputation, funding, etc.)
I cannot tell whether the people who don't like what Dr. Fine is saying believe that he is wrong about his findings, or about what they mean. Do they disagree that he has found antigliadin IgA antibodies in stool in patients who didn't have them in their blood? Or do they think that, even if he did find that, it doesn't mean what he thinks it means? And if the latter, do they think it means something else?
The length of time to diagnosis is a huge problem for celiacs and MC patients, both in terms of the suffering of living with symptoms and in terms of cumulative damage to health. It looks as though Enterolab testing could save a lot of people a lot of unnecessary pain.
I'm not knocking Dr. G. or anyone else. But I expect I might get helpful information from Enterolab three months before my doctor appointment date, and am optimistic to start feeling better and move onto LEAP/MRT.
Here in NYC I've heard people almost seeming to brag that their awesome doctor doesn't accept *any* insurance. Well, why the heck not? To me that just says "I can't be bothered" - not really the kind of world view I'm seeking. I know it's annoying to deal with, but it's a real difference-maker to most patients - a much bigger difference to me people than expensive decor or a high-status address.
My goodness, one rant just leads right to another with me these days...
Sara
My turn to rant!!
Not accepting insurance simply means they want to make more money. When doctors (or any practitioner) become credentialed with an insurance plan it means they accept their rate, which is often far less than what the practitioner charges to non-insurance clients. I'm often not thrilled with the insurance rates but for me it's the right thing to do because it makes my services acceptable to a wider range of clients. However, I judge him not . . . . there is an appeal to not dealing with insurance companies, but for me I can't in good conscience limit my services to the wealthy.
Mary Beth
Not accepting insurance simply means they want to make more money. When doctors (or any practitioner) become credentialed with an insurance plan it means they accept their rate, which is often far less than what the practitioner charges to non-insurance clients. I'm often not thrilled with the insurance rates but for me it's the right thing to do because it makes my services acceptable to a wider range of clients. However, I judge him not . . . . there is an appeal to not dealing with insurance companies, but for me I can't in good conscience limit my services to the wealthy.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sara
your approach sounds very similar to mine, you research and assess various options avialable. You have very quickly learnt that there are so many variables in MC world.
my advice/reminder is that while enterolab testing, mrt testing and even the BIA that i have been doing give us some information that may or may not help, the one thing you can trust is your body, your body will let you know if something is right or wrong.
while there is quite a lot similiaraties amongst this group, i dont think there are two people on this site that have the exact same symptoms and exact same list of intolerences/allergies. (any wonder doctors struggle to support patients with MC)
keep smiling, love your positive attitude to the challenge ahead
your approach sounds very similar to mine, you research and assess various options avialable. You have very quickly learnt that there are so many variables in MC world.
my advice/reminder is that while enterolab testing, mrt testing and even the BIA that i have been doing give us some information that may or may not help, the one thing you can trust is your body, your body will let you know if something is right or wrong.
while there is quite a lot similiaraties amongst this group, i dont think there are two people on this site that have the exact same symptoms and exact same list of intolerences/allergies. (any wonder doctors struggle to support patients with MC)
keep smiling, love your positive attitude to the challenge ahead
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Mary Beth - good for you. ;)
Gabes, that was a timely reminder, thanks. One size definitely does not fit all! In fact, I'm starting to see that some things that have worked for me one day may not work another. Hopefully, some things that have NOT been working will switch sides, too - eventually.
Sara
Gabes, that was a timely reminder, thanks. One size definitely does not fit all! In fact, I'm starting to see that some things that have worked for me one day may not work another. Hopefully, some things that have NOT been working will switch sides, too - eventually.
Sara
Sara,
Good to see an update from you - have been wondering how you're doing. Being extra cautious with your diet seems to be serving you well, so keep up the good work!!! Mary Beth's news about Peter Green are disappointing, but when all is said and done, we each have to be our own "doctor". From our collective experience here, very few of us have been fortunate enough to find a GI who could actually relate.
There are so many twists and turns on this MC road, but with your proactive, thoughtful attitude, I have no doubt you'll figure out the right path for yourself to manage well. Getting your results back from Enterolab will be very helpful, as it takes away some of the guesswork. Wish you all the best and look forward to your future updates.
Love,
Kari
Good to see an update from you - have been wondering how you're doing. Being extra cautious with your diet seems to be serving you well, so keep up the good work!!! Mary Beth's news about Peter Green are disappointing, but when all is said and done, we each have to be our own "doctor". From our collective experience here, very few of us have been fortunate enough to find a GI who could actually relate.
There are so many twists and turns on this MC road, but with your proactive, thoughtful attitude, I have no doubt you'll figure out the right path for yourself to manage well. Getting your results back from Enterolab will be very helpful, as it takes away some of the guesswork. Wish you all the best and look forward to your future updates.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Thanks, Kari. I have to keep in mind that having a sunny attitude and a restricted isn't the same as stamping "problem solved" on my case file. And I have to remember that having my food organized and thought out is temporary, because I keep eating it, and need to buy and prepare more - especially with Robert away for a couple of days, because he lives to forage for tasty things.
I am optimistic, both about being my own 'primary care' person, and about finding compatible help from doctors and other helpers going forward. My Enterolab test kit has landed, so I should know more by the end of April.
Welcome back!
Love,
Sara
I am optimistic, both about being my own 'primary care' person, and about finding compatible help from doctors and other helpers going forward. My Enterolab test kit has landed, so I should know more by the end of April.
Welcome back!
Love,
Sara