Hi Jean!
I saw your note on the "metallic" thread and decided to start a new thread. BTW, I agree with the explanation that Tex provided to you on that thread.
I just wanted to acknowledge your frustration and to reiterate that there is no doubt that MC is a "roller coaster disease". And that it often takes an inordinate amount to patience, time and detective work to tease out the culprits that are making you sick. The most discouraging thing, as you said, is that even when you think you have succeeded, the disease returns....often with a vengeance. I remain convinced that there are factors we still don't understand that can cause flares, despite our best efforts to avoid problem foods. For example, I wonder about seasonal influences of some kind. And the importance of stress, which is significant, in my experience. A case in point.....10 years after my MC diagnosis I was in longterm remission and even had normal biopsies during my colonoscopy showing no more evidence of MC. Shortly after that, my brother was diagnosed with pancreatic cancer, and I became his main caretaker. You guessed it..... Major flare which persisted for months! It started the minute I heard about his diagnosis. (that old brain/gut connection).
I'm not totally aware of how you have been coping with your MC. Did you have the enterolab tests? They are so helpful initially for determining those "major" sensitivities. Of course, it is possible to figure everything out with an elimination diet, but it is not easy. You have to start with one or 2 foods that you are positive are safe and then add one new food every few days. Along with that, you need to keep a detailed journal each day of the timing and quality of your poops as well as aches/pains/fatigue/bloating/nausea/gas, etc. The biggest problem is knowing which foods might be completely safe to start with. Many years after diagnosis I found out on the MRT (mediated release test) that I was sensitive to so many foods that I had never guessed (see list to the left under my avatar). You are eating pork and sweet potatoes. In my case, I am safe with the sweet potatoes, but MRT showed me sensitive to pork, which I had not guessed. However, most here have nowhere near the number of sensitivities that I do so and should have an easier time with the detective work. The second biggest problem with the elimination diet in my experience is that if you are having D constantly, how can you even tell any difference when adding a new food?
FWIW, here is my own personal experience to get to remission with diet alone:
*enterolab tests
*elimination of unsafe foods as per enterolab
*ongoing info and support from this forum
*regular aerobic and strength training
*vitamin D, 3000 IUs/day (from Freeda - contains none of my sensitivities)
*no herbs, supplements, or other OTC preps (I am lucky I don't need any prescription meds, but if I did, I would call the manufacturer to check on all inert ingredients)
*relaxation/meditation as many days as possible ("me" time for reducing stress)
*paleo diet, which got me to about 85% of normal
*MRT, which helped me to tweak the diet and get me to 99% normal (I will probably never be 100% normal - LOL)
*TIME....perhaps the most important!
*Claritin or Zantac as needed - at present I only need them if I eat something unsafe or if the BMs get a little soft
Of course, I am not advocating this approach for anyone else - we know that we are all different and each must find his/her own way.
Love,
Polly
Paging Jeanemcl
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Paging Jeanemcl
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
Thanks so much for the info. OK, I admit it. I got talked into taking supplements I shouldn't I guess, but I did feel so darn good for almost a month. Geez! I did get the enterlab testing in Nov. and have not intentionally included any gluten, soy or cassein in my diet since then. I also did the panel C. My overall score was ok, but it did list chicken and rice as 3+ so after I got so sick in Dec. I eliminated them. I understand though that they should be ok as my overall score was under 10. I don't know what the MRT testing is but I have been looking it up. Did you have that done locally? Maybe that will be my next investment.
I have settled somewhat now and am not as sick as I was a few days ago. I took 2 imodium in the am and that or divine intervention settled things somewhat. I am a functioning person at this point. I am thinking about taking imodium every third day so I can work and live in the outside world. I know Tex talks alot about Mast Cells so I added two allegra in the am and 2 benedryl in the pm. I tried this before but wasn't sure it was making any difference, but decided to try it again. I have had two days with pork, sweet potato, almond milk and my protein drink (soy free, cassein free and gluten free) which I have 2 times a day. My gut is not rumbling now (I am whispering that so not to jinx myself )
and I am feeling like eating today. so, this episode started a week ago for some reason. It blew up totally when I had eggs so I don't get that as I am supposed to be able to have them....or maybe it was a coincidence...that is the frustrating part. I had eggs before and seemed ok. so, I will do one more day of pork and sweet potato and then add one more of the foods I think I can eat if I stay ok. Stool still loose but somewhat formed and light in color which I understand means rapid digestion...
I walk several days after work for about 2 miles, but I haven't felt like doing anything more (like aeorbic), but that is something to consider. I did have vitD in gummies that said they were soy free, gluten free and cassein free. I stopped taking them because I was overwhelmed with supplements...is there an emoticon for fool????
I must tell you I though the aloe vera leaf made my stomach calm....maybe my imagination and the enzymes made sense to me. Who knows.
I get the meditation thing....I am pretty spirtual, but when I don't feel good that all goes out the window and I obsess over what I am doing wrong or what will make me better, or am I going to be ok to go out of town, or can I go to work tomorrow, or will the school be mad at me if I don't show....on and on until I can't even stand MYSELF!!!
That is my weakest area and that is why I started the Kava Kava and Sam-e to get myself calmed down.... 
So, I see I have many things to work on and I appreciate any feedback you may have. I may try to add one food every three days (I think that is the drill right?) and maybe down the road consider the MRT testing.
Again, I can't tell you how grateful I am for everyone on this site that has helped me so much with this journey. Namaste
Jean
Thanks so much for the info. OK, I admit it. I got talked into taking supplements I shouldn't I guess, but I did feel so darn good for almost a month. Geez! I did get the enterlab testing in Nov. and have not intentionally included any gluten, soy or cassein in my diet since then. I also did the panel C. My overall score was ok, but it did list chicken and rice as 3+ so after I got so sick in Dec. I eliminated them. I understand though that they should be ok as my overall score was under 10. I don't know what the MRT testing is but I have been looking it up. Did you have that done locally? Maybe that will be my next investment.
I have settled somewhat now and am not as sick as I was a few days ago. I took 2 imodium in the am and that or divine intervention settled things somewhat. I am a functioning person at this point. I am thinking about taking imodium every third day so I can work and live in the outside world. I know Tex talks alot about Mast Cells so I added two allegra in the am and 2 benedryl in the pm. I tried this before but wasn't sure it was making any difference, but decided to try it again. I have had two days with pork, sweet potato, almond milk and my protein drink (soy free, cassein free and gluten free) which I have 2 times a day. My gut is not rumbling now (I am whispering that so not to jinx myself )
and I am feeling like eating today. so, this episode started a week ago for some reason. It blew up totally when I had eggs so I don't get that as I am supposed to be able to have them....or maybe it was a coincidence...that is the frustrating part. I had eggs before and seemed ok. so, I will do one more day of pork and sweet potato and then add one more of the foods I think I can eat if I stay ok. Stool still loose but somewhat formed and light in color which I understand means rapid digestion...I walk several days after work for about 2 miles, but I haven't felt like doing anything more (like aeorbic), but that is something to consider. I did have vitD in gummies that said they were soy free, gluten free and cassein free. I stopped taking them because I was overwhelmed with supplements...is there an emoticon for fool????
I must tell you I though the aloe vera leaf made my stomach calm....maybe my imagination and the enzymes made sense to me. Who knows. I get the meditation thing....I am pretty spirtual, but when I don't feel good that all goes out the window and I obsess over what I am doing wrong or what will make me better, or am I going to be ok to go out of town, or can I go to work tomorrow, or will the school be mad at me if I don't show....on and on until I can't even stand MYSELF!!!
That is my weakest area and that is why I started the Kava Kava and Sam-e to get myself calmed down.... So, I see I have many things to work on and I appreciate any feedback you may have. I may try to add one food every three days (I think that is the drill right?) and maybe down the road consider the MRT testing.
Again, I can't tell you how grateful I am for everyone on this site that has helped me so much with this journey. Namaste
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
Jean,
I take an Imodium every 2-3 days and I like that it just makes things more predictable and gives me a little more feeling of security, thus reducing anxiety. I also take Zyrtec in the AM and sometimes a Zantac at night. That little regimen has made a BIG difference for me, in addition to GF/DF/SF dietary changes. The mast cell issue was a missing piece of the puzzle for me for a while.
My PCP, GI doc and I have all agreed: less is more in terms of meds and supplements. I feel I have been way better off for that.
Believe me, I too am prone to obsessing about what to do/not do, but since I have gotten myself calmed down, I have been able to get things to a place where I live what I consider to be a mostly normal life, including travel.
If I have a day when I don't feel good, I work hard not to beat myself up--just step back, re-group and go on. My GI doc made it very clear that I should expect periodic flares, despite all my best efforts at diet, due to stress primarily. And that has played out as true.
Exercise really helps me, including yoga. Namaste.
I take an Imodium every 2-3 days and I like that it just makes things more predictable and gives me a little more feeling of security, thus reducing anxiety. I also take Zyrtec in the AM and sometimes a Zantac at night. That little regimen has made a BIG difference for me, in addition to GF/DF/SF dietary changes. The mast cell issue was a missing piece of the puzzle for me for a while.
My PCP, GI doc and I have all agreed: less is more in terms of meds and supplements. I feel I have been way better off for that.
Believe me, I too am prone to obsessing about what to do/not do, but since I have gotten myself calmed down, I have been able to get things to a place where I live what I consider to be a mostly normal life, including travel.
If I have a day when I don't feel good, I work hard not to beat myself up--just step back, re-group and go on. My GI doc made it very clear that I should expect periodic flares, despite all my best efforts at diet, due to stress primarily. And that has played out as true.
Exercise really helps me, including yoga. Namaste.
Suze
Jean,
Glad to hear you are feeling a little better!
Please don't beat yourself up for experimenting with supplements. One of the important facts I neglected to mention is that figuring out those steps listed above that helped me to get well took almost 14 YEARS! LOL. And there was MUCH trial and error during that time period. It was a process. I tried things other than those listed that didn't work for me ie. different brands of probiotics, Pepto Bismol, Asacol, etc. I do not see any problem with using Imodium (so long as it is the "A-D" preparation which is free from lactose and most major sensitivities), and I agree that the histamine blockers like Allegra and Benadryl may be quite beneficial (as I found with the Claritin and Zantac).
It has been a very short time since you eliminated your enterolab sensitivities. Did you know that it took me 9 mo. to see a formed BM after I eliminated the initial offenders I learned about? And some on this Board took even longer -as much as a year (one even took 18 mo.). The good news is that very few here have as many sensitivities as I do, so it should be easier for most others to go into remission. And it sounds like you didn't have too many issues beyond the big 3 on your enterolab tests, which is encouraging.
One potential red flag for me is the "protein drink" you are taking twice a day. What are the ingredients, if you don't mind me asking? Also, the commercial nut milks often contain thickeners like carrageenan , guar gum, or xanthan gum, all of which can be problems. I cannot tolerate guar or carrageenan but seem to do OK with small amounts of xanthan gum, for some reason. In general, it is best initially to avoid any commercial products if it is at all possible. Plain, natural food is the best. But of course, it takes more time to shop for and prepare it.
I find that meditation is just what I need to calm that old "monkey mind" as the Buddhists call it......those obsessive thoughts that you noted ("should I?, why didn't I?, If only I had", etc. It IS extremely difficult to learn to control the mind, but it is possible. It's a discipline like anything else - you have to make time each day (even if it's only 5 minutes) and JUST DO IT (as Nike says, lol). One of my favorite sayings is: "Yes, life is indeed painful. But we don't have to suffer". It is the MIND that causes the suffering - much more so than the actual life events. Have you ever noticed how things usually don't turn out nearly as badly as the way we imagine they will? The worst case scenario rarely happens, although we spend a lot of time worrying/obsessing about it.
Anyway, good luck on your journey to health!
Namaste,
Polly
Glad to hear you are feeling a little better!
Please don't beat yourself up for experimenting with supplements. One of the important facts I neglected to mention is that figuring out those steps listed above that helped me to get well took almost 14 YEARS! LOL. And there was MUCH trial and error during that time period. It was a process. I tried things other than those listed that didn't work for me ie. different brands of probiotics, Pepto Bismol, Asacol, etc. I do not see any problem with using Imodium (so long as it is the "A-D" preparation which is free from lactose and most major sensitivities), and I agree that the histamine blockers like Allegra and Benadryl may be quite beneficial (as I found with the Claritin and Zantac).
It has been a very short time since you eliminated your enterolab sensitivities. Did you know that it took me 9 mo. to see a formed BM after I eliminated the initial offenders I learned about? And some on this Board took even longer -as much as a year (one even took 18 mo.). The good news is that very few here have as many sensitivities as I do, so it should be easier for most others to go into remission. And it sounds like you didn't have too many issues beyond the big 3 on your enterolab tests, which is encouraging.
One potential red flag for me is the "protein drink" you are taking twice a day. What are the ingredients, if you don't mind me asking? Also, the commercial nut milks often contain thickeners like carrageenan , guar gum, or xanthan gum, all of which can be problems. I cannot tolerate guar or carrageenan but seem to do OK with small amounts of xanthan gum, for some reason. In general, it is best initially to avoid any commercial products if it is at all possible. Plain, natural food is the best. But of course, it takes more time to shop for and prepare it.
I find that meditation is just what I need to calm that old "monkey mind" as the Buddhists call it......those obsessive thoughts that you noted ("should I?, why didn't I?, If only I had", etc. It IS extremely difficult to learn to control the mind, but it is possible. It's a discipline like anything else - you have to make time each day (even if it's only 5 minutes) and JUST DO IT (as Nike says, lol). One of my favorite sayings is: "Yes, life is indeed painful. But we don't have to suffer". It is the MIND that causes the suffering - much more so than the actual life events. Have you ever noticed how things usually don't turn out nearly as badly as the way we imagine they will? The worst case scenario rarely happens, although we spend a lot of time worrying/obsessing about it.
Anyway, good luck on your journey to health!
Namaste,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Jean,
You mentioned that you were surprised that you were bothered by eggs and that you are sometimes ok with eggs. I have the same situation with both eggs and chicken. I have eliminated both although I don't concern myself with "trace" or contact for either. On the other hand, I'm GF, DF, and SF.
One of the early pearls I remember from this Board is Tex saying that we MC'ers have in common that we are high-achieving perfectionists. Then, of course, if this is true, we should be able to "fix" this in no time flat as long as we STEP UP TO THE PLATE AND GIVE IT OUR BEST, DAY AND NIGHT, 24/7, RAIN OR SHINE, GOOD TIMES AND BAD, SIX SIGMA EFFORT! Hahahaha! I wonder how much this personality type contributes to MC. I'm with Polly, my difficult life events live in my gut. I'm learning to chill. If anyone knows of classes for the "chilling impaired", please sign me up.
Feel better!
DJ
You mentioned that you were surprised that you were bothered by eggs and that you are sometimes ok with eggs. I have the same situation with both eggs and chicken. I have eliminated both although I don't concern myself with "trace" or contact for either. On the other hand, I'm GF, DF, and SF.
One of the early pearls I remember from this Board is Tex saying that we MC'ers have in common that we are high-achieving perfectionists. Then, of course, if this is true, we should be able to "fix" this in no time flat as long as we STEP UP TO THE PLATE AND GIVE IT OUR BEST, DAY AND NIGHT, 24/7, RAIN OR SHINE, GOOD TIMES AND BAD, SIX SIGMA EFFORT! Hahahaha! I wonder how much this personality type contributes to MC. I'm with Polly, my difficult life events live in my gut. I'm learning to chill. If anyone knows of classes for the "chilling impaired", please sign me up.
Feel better!
DJ
Jean,
I am 2 1/2 years into this illness, and haven't yet achieved healing, no matter what I do. So I am chilling a little. Not being as obsessive as I was about everything. Don't get me wrong. I don't touch gluten, dairy soy, corn, rice, chicken, turkey and many other foods. However in the past few weeks I have relaxed just a little and have added a little home made chicken stock into home made soup, eggs into baked goods, and some almond meal too. This, for me, is REALLY relaxing, since I haven't touched any of these things for over 2 years.
And while I am not getting N I am not getting horrible C either. BMs once a day, strange color (yellow - probably malabsorbtion of fats or something like) formed, and floating; some cramping and discomfort, but WAY less than I was.
It takes time and effort. You will get all the help you need here.
I am 2 1/2 years into this illness, and haven't yet achieved healing, no matter what I do. So I am chilling a little. Not being as obsessive as I was about everything. Don't get me wrong. I don't touch gluten, dairy soy, corn, rice, chicken, turkey and many other foods. However in the past few weeks I have relaxed just a little and have added a little home made chicken stock into home made soup, eggs into baked goods, and some almond meal too. This, for me, is REALLY relaxing, since I haven't touched any of these things for over 2 years.
And while I am not getting N I am not getting horrible C either. BMs once a day, strange color (yellow - probably malabsorbtion of fats or something like) formed, and floating; some cramping and discomfort, but WAY less than I was.
It takes time and effort. You will get all the help you need here.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
To chime in....
Over my 4 year mc (and other medical issues) journey, I have tried a few supplements and figured out that, sub lingual D, and B are good. I use liquid zinc. And a bit of magnesium powder for gerd/fibro pain.
I have tried many whole of body treatments, most are really good at reducing and calming the symptoms. None of them eliminate symptoms.
A key part of my journey was my thoughts.... Rather than put my energy (and money...) into trying to remove, eliminate, exterminate even!! The symptoms. Mindfulness and acceptance of what is has taught me to come to peace with the symptoms... Learn to live with them, befriend them, understand them, listen to my body and go with the flow (rather than try and make it conform to my timetable.
This mind body journey has been a 2 -3 year journey, and it is still going....
Some of what worked 2 years ago, does not work now...
I do know that until we get the mind and the body settled, in synch, calm, having a good friendship together, no amount of external treatments, supplements, healing foods, 'superfoods' will help
To add to Polly's list, our teeth and gums are an important link to the health of our gut, every meal, every drink, bacteria (some good and most bad) from teeth/gums goes into the gut...
Dental treatments are big mast cell /histamine issue.
I know Polly has had some pretty full on root canals etc in the same period.
In addition to being a roller coaster, it is also a crazy dance of 1 step forward, side step, 2 steps backward, another side step, spin in confusion, then try to step forward again while dizzy...
No where near the gentleness of a waltz, more like an out of control jive!!
The good part, we are all dancing around together! You are not alone
Healing hugs
Over my 4 year mc (and other medical issues) journey, I have tried a few supplements and figured out that, sub lingual D, and B are good. I use liquid zinc. And a bit of magnesium powder for gerd/fibro pain.
I have tried many whole of body treatments, most are really good at reducing and calming the symptoms. None of them eliminate symptoms.
A key part of my journey was my thoughts.... Rather than put my energy (and money...) into trying to remove, eliminate, exterminate even!! The symptoms. Mindfulness and acceptance of what is has taught me to come to peace with the symptoms... Learn to live with them, befriend them, understand them, listen to my body and go with the flow (rather than try and make it conform to my timetable.
This mind body journey has been a 2 -3 year journey, and it is still going....
Some of what worked 2 years ago, does not work now...
I do know that until we get the mind and the body settled, in synch, calm, having a good friendship together, no amount of external treatments, supplements, healing foods, 'superfoods' will help
To add to Polly's list, our teeth and gums are an important link to the health of our gut, every meal, every drink, bacteria (some good and most bad) from teeth/gums goes into the gut...
Dental treatments are big mast cell /histamine issue.
I know Polly has had some pretty full on root canals etc in the same period.
In addition to being a roller coaster, it is also a crazy dance of 1 step forward, side step, 2 steps backward, another side step, spin in confusion, then try to step forward again while dizzy...
No where near the gentleness of a waltz, more like an out of control jive!!
The good part, we are all dancing around together! You are not alone
Healing hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I love all of your posts on this thread! This is such a great group of people.
One thing that struck me Jean, is that you are trying to test a new food every three days ( which is a good rule) BUT you may be doing it too soon in your healing process. I stuck to the same diet ( mostly meats, rice,eggs, a few cooked veggies,avocados and chex with almond milk) for at least six months. When I was feeling much better and only having one soft BM a day, did I even try a new food. …. just a thought.
Leah
One thing that struck me Jean, is that you are trying to test a new food every three days ( which is a good rule) BUT you may be doing it too soon in your healing process. I stuck to the same diet ( mostly meats, rice,eggs, a few cooked veggies,avocados and chex with almond milk) for at least six months. When I was feeling much better and only having one soft BM a day, did I even try a new food. …. just a thought.
Leah