Kari,
I must have misunderstood about you being on MRT - I thought after your flare you were changing things up a bit.
You are so right about additives. I always tell people to be squeaky clean in Phase 1 and try to not have any additives. I know how hard it is to find pure foods though.
Your Phase 1 has lots of fiber. I don't want to interfere with the work you are doing with your dietitian but maybe you could talk to her about a modification for a few days with less fiber (beef, yellow squash, peeled cucumber, peeled/cooked apple, cashew butter, buckwheat, basil, ginger, olive/olive oil etc). Maybe eliminate high histamine foods and see what happens (tuna, tilapia, berries, cayenne and really high fiber/gassy foods like beans, cauliflower, cabbage). Just a few days to see if it makes a difference. I wasn't aware of the histamine angle when I did MRT and I ate some high histamine foods early on that I normally didn't eat and I am sure that's why it took me a while longer to calm down. I think it's always worth a try to see if you respond.
Polly,
I can't remember exactly but I think I also suggested to you to avoid high histamine foods early on as well, just to make sure. I think I would recommend to any MCer who does MRT to avoid high lectin foods, histamine foods and too much fiber the first few days. They could all be tested in later phases, which is exactly what you are doing and now it is much easier to track down the culprits.
Hugs,
Mary Beth
My Story
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Thanks for the suggestions Mary Beth - it's pretty much what I had figured out myself by reading here - and I have already dropped many of those foods. My system seems to be responding nicely. I'm not aware of having problems with histamines? How would I know?
My dietitian has not been involved for quite some time - I'm kind of doing this on my own. She thinks very differently about the healing process than I do, as she said the next step for me should be "supplements". I believe very strongly that doing supplements at this point in time will interfere with my healing through the MRT/LEAP program, so we've kind of parted ways for now.
She is very nice and has a lot of knowledge, but as I may have stated somewhere here before, she doesn't seem to have a lot of knowledge about MC. I will probably contact her again when I have more of the greens in my diet, and am ready to do a rotation diet. With the few items I'm currently eating, I'm not quite up to that yet.
As Tex and Polly have said recently, we are so very fortunate to have you here to advise us - thanks again.
Love,
Kari
My dietitian has not been involved for quite some time - I'm kind of doing this on my own. She thinks very differently about the healing process than I do, as she said the next step for me should be "supplements". I believe very strongly that doing supplements at this point in time will interfere with my healing through the MRT/LEAP program, so we've kind of parted ways for now.
She is very nice and has a lot of knowledge, but as I may have stated somewhere here before, she doesn't seem to have a lot of knowledge about MC. I will probably contact her again when I have more of the greens in my diet, and am ready to do a rotation diet. With the few items I'm currently eating, I'm not quite up to that yet.
As Tex and Polly have said recently, we are so very fortunate to have you here to advise us - thanks again.
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
I guess I'll join in the discussion and relate what my Phase 1 recommended MRT foods were and what I actually can eat now:
Salmon - maybe
Clam -no
Crab - no
Amaranth -no
Rye - no
Buckwheat - no
Carrot -no
Mushroom - maybe
Onion - not tested
Mango - not tested
Papaya - not tested
Olive - not tested
Watermelon - not tested
Cheddar Cheese - not tested
Yogurt - not tested
Pistachio - maybe later
Hazelnut - maybe later
Cumin - not tested
Basil - not tested
Carob - not tested
Mint - not tested
So basically, I am not eating any of my Phase 1 foods. That is why I had so much trouble at the beginning. I'm bolding the foods that are not seasonings.
Acceptable phase 2 foods: turkey and mustard
Acceptable Phase 3 foods: lamb, pork, quinoa, asparagus, avocado, cayenne pepper and cane sugar
Acceptable Phase 4 foods: cauliflower, cabbage? (not tried), corn, almond, maple, parsley, ginger, honey
Acceptable Phase 5 foods: rice, broccoli (not yet), celery, black pepper, garlic (not tried), paprika, coconut
The bolded foods constitute my present diet, which seems to be a phase 1 menu type. It took about 6 months to figure out what basic foods I could eat. I've been eating this basic diet (plus Brussel sprouts) for the last 6 months.
Gloria
Salmon - maybe
Clam -no
Crab - no
Amaranth -no
Rye - no
Buckwheat - no
Carrot -no
Mushroom - maybe
Onion - not tested
Mango - not tested
Papaya - not tested
Olive - not tested
Watermelon - not tested
Cheddar Cheese - not tested
Yogurt - not tested
Pistachio - maybe later
Hazelnut - maybe later
Cumin - not tested
Basil - not tested
Carob - not tested
Mint - not tested
So basically, I am not eating any of my Phase 1 foods. That is why I had so much trouble at the beginning. I'm bolding the foods that are not seasonings.
Acceptable phase 2 foods: turkey and mustard
Acceptable Phase 3 foods: lamb, pork, quinoa, asparagus, avocado, cayenne pepper and cane sugar
Acceptable Phase 4 foods: cauliflower, cabbage? (not tried), corn, almond, maple, parsley, ginger, honey
Acceptable Phase 5 foods: rice, broccoli (not yet), celery, black pepper, garlic (not tried), paprika, coconut
The bolded foods constitute my present diet, which seems to be a phase 1 menu type. It took about 6 months to figure out what basic foods I could eat. I've been eating this basic diet (plus Brussel sprouts) for the last 6 months.
Gloria
You never know what you can do until you have to do it.
Kari,
I think there's no way for dietitians or doctors to really know about MC unless they follow this forum - we are the scientists and subjects and have more credible info than any study they could read in a journal.
Mast cell/histamine issues are hard to diagnose and tricky to manage. You could simply try the histamine diet with your MRT results (very limiting I realize) and see if it makes a difference. If you are eating high histamine foods and doing OK, then that's probably not your issue.
Mary Beth
I think there's no way for dietitians or doctors to really know about MC unless they follow this forum - we are the scientists and subjects and have more credible info than any study they could read in a journal.
Mast cell/histamine issues are hard to diagnose and tricky to manage. You could simply try the histamine diet with your MRT results (very limiting I realize) and see if it makes a difference. If you are eating high histamine foods and doing OK, then that's probably not your issue.
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
Hello, my new heroes - I am in the throes of writing my introductory post (or rather, editing it down to readable length) - but I want to ask before I forget (brain fog!): are there lists on this forum, or links, to foods high in histamines, lectins, etc.?
I am so blown away by this group of generous, exceptional thinkers (that's what struck me about MDs, through my parents' old-age issues - lots of knowledge, but where's the curiosity, the thinking?)... And I am feeling lucky for many things, many detailed in my giant, other "first" post (which I promise to post at some 'digestible' length by tomorrow).
Thanks for any tips about reference posts/lists on histamine foods and lectins. 'Histamine' is a word that gets my attention, as a lifelong allergy gal. I've been sneezing my head off during the current 'event' that prompted me to find you all - but don't seem to have a cold OR allergies at the moment.
How I wish there had been something like this on the 'Net (or any decent MC info!) when I was DX in 1997 - and how glad I am that you weren't all hanging out here in '97, hope most of you were feeling great then ;) And I am so, so grateful for my seeming lack of issues most of the time since then.
Thank you all again for being here - I wish I could have met you at a whole different 'gastro-pub' but am convinced there is no better community than this one out there, and I've been a party to some great ones.
All my best,
Sara
I am so blown away by this group of generous, exceptional thinkers (that's what struck me about MDs, through my parents' old-age issues - lots of knowledge, but where's the curiosity, the thinking?)... And I am feeling lucky for many things, many detailed in my giant, other "first" post (which I promise to post at some 'digestible' length by tomorrow).
Thanks for any tips about reference posts/lists on histamine foods and lectins. 'Histamine' is a word that gets my attention, as a lifelong allergy gal. I've been sneezing my head off during the current 'event' that prompted me to find you all - but don't seem to have a cold OR allergies at the moment.
How I wish there had been something like this on the 'Net (or any decent MC info!) when I was DX in 1997 - and how glad I am that you weren't all hanging out here in '97, hope most of you were feeling great then ;) And I am so, so grateful for my seeming lack of issues most of the time since then.
Thank you all again for being here - I wish I could have met you at a whole different 'gastro-pub' but am convinced there is no better community than this one out there, and I've been a party to some great ones.
All my best,
Sara
Welcome Sara,
Glad you found us! As you can tell we really think diet is central to management of MC.
Here is some info on lectins:
http://www.krispin.com/lectin.html
and histamines:
http://www.ajcn.org/content/85/5/1185.full.pdf+html
http://www.urticaria.thunderworksinc.co ... tamine.htm
The vast majority of people with MC figure out that they are sensitive to particular lectins (gluten, dairy, soy, eggs). You can do testing at enterolab www.enterolab.com to determine these sensitivities. For a few others we seem to have multiple intolerances and an even smaller percentage find they have mast cell/histamine issues. If you use the search tool on this site you can read through previous posts on mastocytic enterocolitis or mast cell issues. Certainly not everyone needs to follow a low histamine diet, but those of us that have done MRT all have had many intolerances that were hard to pinpoint, which is why I suggest in these cases we investigate response to histamines to see if they play a role.
I couldn't agree with you more about how many medical professionals have lost their ability to be "exceptional thinkers". I agree that this board has an abundance of exceptional thinkers and we are very fortunate to have found each other.
Mary Beth
Glad you found us! As you can tell we really think diet is central to management of MC.
Here is some info on lectins:
http://www.krispin.com/lectin.html
and histamines:
http://www.ajcn.org/content/85/5/1185.full.pdf+html
http://www.urticaria.thunderworksinc.co ... tamine.htm
The vast majority of people with MC figure out that they are sensitive to particular lectins (gluten, dairy, soy, eggs). You can do testing at enterolab www.enterolab.com to determine these sensitivities. For a few others we seem to have multiple intolerances and an even smaller percentage find they have mast cell/histamine issues. If you use the search tool on this site you can read through previous posts on mastocytic enterocolitis or mast cell issues. Certainly not everyone needs to follow a low histamine diet, but those of us that have done MRT all have had many intolerances that were hard to pinpoint, which is why I suggest in these cases we investigate response to histamines to see if they play a role.
I couldn't agree with you more about how many medical professionals have lost their ability to be "exceptional thinkers". I agree that this board has an abundance of exceptional thinkers and we are very fortunate to have found each other.
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
Hi Sara and 
What a great, upbeat post! Will look forward to your "giant" post! LOL!
I was diagnosed in 2000, so I am an MC "oldtimer" too. I was lucky to find this original board (started by Sally Reed) and learn about the gluten connection and enterolab. So, even though I have multiple food sensitivities (I am aware of at least 40 to date) I have been able to manage my MC with diet alone. In fact, last summer my 10 year colonoscopy biopsies showed no evidence of MC. Shortly thereafter I had the worst flare I have ever had, which I now believe was to to the corrosive colonoscopy prep plus huge stress over losing my beloved golden retriever. Am back on track now and having normal BMs, mainly due to the MRT/LEAP diet (and of course, avoiding all of my original sensitivities).
I would strongly recommend getting the enterolab tests first, as Mary Beth suggested.
Looking forward to further chats!
Feel free to ask anything, and I mean anything. And yes, this is an EXCEPTIONAL group.
Love,
Polly
What a great, upbeat post! Will look forward to your "giant" post! LOL!
I was diagnosed in 2000, so I am an MC "oldtimer" too. I was lucky to find this original board (started by Sally Reed) and learn about the gluten connection and enterolab. So, even though I have multiple food sensitivities (I am aware of at least 40 to date) I have been able to manage my MC with diet alone. In fact, last summer my 10 year colonoscopy biopsies showed no evidence of MC. Shortly thereafter I had the worst flare I have ever had, which I now believe was to to the corrosive colonoscopy prep plus huge stress over losing my beloved golden retriever. Am back on track now and having normal BMs, mainly due to the MRT/LEAP diet (and of course, avoiding all of my original sensitivities).
I would strongly recommend getting the enterolab tests first, as Mary Beth suggested.
Looking forward to further chats!
Feel free to ask anything, and I mean anything. And yes, this is an EXCEPTIONAL group.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Sara - to our little internet family. As you have already figured out, this is the best place for knowledge about MC, as well as compassion and caring. Glad you found us. This place has actually been around going on 11 years now - which is pretty impressive!!!!! I found it last September, and it has been a true lifesaver for me. I look forward to hearing your story.
Polly - so glad for you that you were wise enough to have Mary Beth advise you at the start of your MRT/LEAP program - she is so kind with her efforts here. Have a feeling that if Gloria and I had the same, we would have seen improvements sooner, or a least avoided the big traps. Anyhow, like you, I'm so grateful that she is available here as I muddle along.
Mary Beth - I totally agree with you about dietitians and doctors - MC is certainly not in the forefront of what they have to focus on in their long, arduous studies/training. As I said, my dietitian has a lot of knowledge, just not about MC :(.
Gloria - that's interesting about your phase 1 food choices - at least I am still eating quite a few of them, and have added some new ones. I think the excess fiber is what my problem has been (I will now also check on the histamine issue) - should have paid closer attention to what people have been saying here. Guess it's that stubborn streak in me :).
Love,
Kari
to our little internet family. As you have already figured out, this is the best place for knowledge about MC, as well as compassion and caring. Glad you found us. This place has actually been around going on 11 years now - which is pretty impressive!!!!! I found it last September, and it has been a true lifesaver for me. I look forward to hearing your story.Polly - so glad for you that you were wise enough to have Mary Beth advise you at the start of your MRT/LEAP program - she is so kind with her efforts here. Have a feeling that if Gloria and I had the same, we would have seen improvements sooner, or a least avoided the big traps. Anyhow, like you, I'm so grateful that she is available here as I muddle along.
Mary Beth - I totally agree with you about dietitians and doctors - MC is certainly not in the forefront of what they have to focus on in their long, arduous studies/training. As I said, my dietitian has a lot of knowledge, just not about MC :(.
Gloria - that's interesting about your phase 1 food choices - at least I am still eating quite a few of them, and have added some new ones. I think the excess fiber is what my problem has been (I will now also check on the histamine issue) - should have paid closer attention to what people have been saying here. Guess it's that stubborn streak in me :).
Love,
Kari
Thanks so much, Mary Beth, Polly and Kari, for your welcome. I've already learned so much here.
Mary Beth, I had actually been looking into Enterolab testing before this latest recurrence, in my search to figure out whether my suspicions about gluten were justified. So I was astonished (and thrilled, and relieved) to find it so highly regarded and helpful here. Thanks hugely for the clear suggestions for a way forward. I've been trying to piece together a plan, and it helps so much to have a clear next step.
Polly, thanks for seconding the vote for testing. I'm late for my 50yo colonoscopy, because I've always been uneasy that it might "upset the apple cart." 'm sorry that happened to you, and sorry for the loss of your dog. I'm sure the conversation with the gastro doc I need to seek out will be interesting, because I have been thinking of requesting a virtual colonoscopy anyway, and I know they don't like that. Amazing that your biopsy showed no MC - what a powerful proof that what you're doing is working.
Kari, I have been finding your posts so inspiring. My husband, like your SO, has been having some special meals or snacks outside the house. Our morning coffee routine is a sacred tradition around here, and I'm lucky that I seem to be tolerating it. But I know if it stops working for me, I will do what must be done.
You all have given me an enormous optimism about this. I was just reading about a 'weekend getaway special deal' at a fabulous place - all meals included (including, of course, their famous tea and cookies - and I don't even care for cookies!). And then I just burst out laughing. I'm sure I won't always be this amused, but it's a great place to start recovering from.
And I appreciate that you are all when I'm a little on the whinier side, truly.
Back to my "first" post - best of health to all,
Sara
Mary Beth, I had actually been looking into Enterolab testing before this latest recurrence, in my search to figure out whether my suspicions about gluten were justified. So I was astonished (and thrilled, and relieved) to find it so highly regarded and helpful here. Thanks hugely for the clear suggestions for a way forward. I've been trying to piece together a plan, and it helps so much to have a clear next step.
Polly, thanks for seconding the vote for testing. I'm late for my 50yo colonoscopy, because I've always been uneasy that it might "upset the apple cart." 'm sorry that happened to you, and sorry for the loss of your dog. I'm sure the conversation with the gastro doc I need to seek out will be interesting, because I have been thinking of requesting a virtual colonoscopy anyway, and I know they don't like that. Amazing that your biopsy showed no MC - what a powerful proof that what you're doing is working.
Kari, I have been finding your posts so inspiring. My husband, like your SO, has been having some special meals or snacks outside the house. Our morning coffee routine is a sacred tradition around here, and I'm lucky that I seem to be tolerating it. But I know if it stops working for me, I will do what must be done.
You all have given me an enormous optimism about this. I was just reading about a 'weekend getaway special deal' at a fabulous place - all meals included (including, of course, their famous tea and cookies - and I don't even care for cookies!). And then I just burst out laughing. I'm sure I won't always be this amused, but it's a great place to start recovering from.
And I appreciate that you are all when I'm a little on the whinier side, truly.
Back to my "first" post - best of health to all,
Sara