The reason I changed to this was because a friend recommended a book called "Deliciously Ella" by Ella Woodward - she has healed herself (she suffered with Postural Tachycardia Syndrome) through diet alone, and I figured why not??
Anne
Astoundingly this works for me!!!
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Astoundingly this works for me!!!
Now some of you are going to be amazed at this but I think I have found a diet that really works for me and it is not what most of you would be able to tolerate. I have been experimenting for the last month with a gluten and soya free vegan diet and it really seems to be working! I am eating a huge amount of vegetables - some cooked and some raw - and I have had really significantly dramatic results with Norman only twice a day! Days when I have not stuck to it e.g. I had a steak the other night see some return of symptoms. It is early days but I find that I have so much more energy but when I eat "normal" food my energy drops and my need to go to the loo becomes more urgent. I am wondering if anyone else here follows something similar?
The reason I changed to this was because a friend recommended a book called "Deliciously Ella" by Ella Woodward - she has healed herself (she suffered with Postural Tachycardia Syndrome) through diet alone, and I figured why not??
Anne
The reason I changed to this was because a friend recommended a book called "Deliciously Ella" by Ella Woodward - she has healed herself (she suffered with Postural Tachycardia Syndrome) through diet alone, and I figured why not??
Anne
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
Anne,
I agree that's unusual, but whatever works best for you is the way to go when dealing with MC.
Please remember that with a vegan diet, your vitamin B-12 will slowly become depleted, so you will almost surely eventually need to take a B-12 supplement. Also, without soy or other legumes, it will be difficult to ingest enough protein to maintain optimum long-term health. You may need to consider a safe protein powder supplement.
Tex
I agree that's unusual, but whatever works best for you is the way to go when dealing with MC.
Please remember that with a vegan diet, your vitamin B-12 will slowly become depleted, so you will almost surely eventually need to take a B-12 supplement. Also, without soy or other legumes, it will be difficult to ingest enough protein to maintain optimum long-term health. You may need to consider a safe protein powder supplement.
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.
Som
Well here I am...another soldier in the battle of bulk and bowels. I (so THANKFULLY!!!!) just found this forum a couple nights ago after being diagnosed with MC a few months ago. Wow - what a blessing this is and all you wonderful, kind, folk that contribute and support each other - I am thrilled to be here (well you know what I mean)...
Can't believe how this MC has changed my life - I have been wondering what the heck just happened to me? I have been healthy as a horse for the past 59 years until - WHAM - I thought I was done for. All these years I have taken pride in my 5 great day a week meaningful, office job. And I was home on weekends chopping and stacking wood and gardening, pushing myself to the limit - then one morning late last fall I went to bed and couldn't get up for 3 days - sheer exhaustion. I said, "whew - I better buy a wood splitter and I did - thinking maybe cortisol was the culprit and I had just overworked my body???
Then the diarrhea struck with a vengeance some weeks later, and you know the rest. Strange, I had no real warning and wonder if any one does? I do know that prior to the "bomb" going off, I started having these real anxious feelings and started obsessing over STUPID little things and knew something was really wrong with me. Went to the Dr. and she put me on Zoloft and told me I was depressed. Told her, "no - I'm NOT depressed - I'm really, REALLY, anxious for no reason at all." (Normally I'm happy go lucky all the time.) Back and forth with her and I finally gave up. She diagnosed me as depressed - which almost made me depressed...
Then, (still prior to the D onslaught) uncontrollable sneezing and asthma started out of the blue. I had stopped my allergy shots a year prior but had a gut feeling it wasn't just my usual allergies because my usual allergy pills DID NOT WORK - AT ALL. I was very concerned and quizzed my allergist over and over, and she couldn't figure it out so put me back on shots.... And all this time, prior to the start of the extreme D, my stomach had this gnawing feeling all the time, just behind my navel. I couldn't figure out - like something chewing away in there. And my stomach made weird, loud, animal noises all the time too and I wondered what the heck was going on. One night my stomach woke me up and I thought there was a wild animal outside my bedroom window - actually scared me until it did it again and i realized it was my stomach...
To go back a bit: Back in the spring of 2017 I was eating a small tub of potato salad and found a piece of a floor mop in it when I was almost half way thru the little tub. I knew that was going to be really bad for me (the store that made it admitted it and gave me $20 gift card to shut up) so I started taking colloidal silver for a couple weeks then stopped hoping that might take care of any loose germs, etc.. I didn't start back up again until the diarrhea hit many months later - not knowing what else to do. Not sure if the floor mop potato salad started all this, or the extreme work I had been doing on weekends when my body really wasn't up to it (Weekend Warrior thing). I guess it doesn't really matter now what caused this, but I am curious because I have gone from a healthy, strong, 5 ft. 7 in., 137 lb. (most of my adult life at this weight - I love to eat and eat like a bear; and healthy stuff too, BTW) woman to a frail-looking and feeling 124 lb. weakling. Prior to my MC diagnosis, my PCP said losing 13 lbs. in 2 mos. was no big deal; that I was just one of the "lucky ones" that could eat what they wanted and didn't gain weight. I told her I don't usually gain or lose weight and can't afford to lose 13 lbs. but she just said she was envious - don't worry about it. What a MAROON!!!!!
After Dr. Colon broke the news to me about the MC (as well as the lesion on my pancreas that showed up on the CT scan -"Likely, IPMN" the report said - another unwelcome finding since my Grandmother died of pancreatic cancer....what the HECK, I say??!!!), I asked him what foods I should avoid, and he said I could eat anything I want as long as it doesn't bother me. He and my PCP were made for each other... He put me on 3 months of Budesonide 3 mg. - I have a couple weeks to go and will be done with it.
Luckily, prior to my diagnosis, I had already stopped all gluten and most sugars and dairy, so symptoms subsided after a bit with a couple bad relapses that were bad enough I couldn't do my usual shoveling, snow-blowing, roof raking, wood hauling, etc. and missed work, AGAIN - grrrrr. Scary, frustrating, stuff it tis....
Anyway, I have ordered Tex's updated MC book and will be relieved to read something focusing on MY condition!! Thank you, Tex - you are an ANGEL on Earth. What would we DO without you?!! All I have been doing is googling, and talking to people that have their own colon issues (none with MC) and lyme, and autoimmune issues, and I have spent so much $ on food and thrown so much out and seems I am always so hungry no matter how much I eat and don't know why..... I am glad you said meat and over cooked veggies are OK because I CRAVE meat - more in the past couple years than ever, for some reason. So that is a good thing.
A final issue: I was diagnosed with lichen sclerosis a couple years ago. That was the 1st real eyeopener that maybe I'm not as healthy as I thought I was...also makes me feel I have lost the femininity I always took for granted. Has made me very sad. I am single, and no man is going to put up with that. I found that out the hard way. So, honestly, I got discouraged and gave up on that also. Has broken my heart.
I have been in a whirlpool with no real direction and although I have learned quite a bit about autoimmune issues, I still feel I have been wasting precious time...my poor body - I wondered what did I do to it?? What should I do....?? Then, the Divine intervened and here I am - FINALLY some direction and people "like me" (sorta!). Thank You, THANK YOU so much for this wonderful, Blessed, site....
I have read a lot of posts and have a lot more to read and have a lot of questions, still. I am sorry this post is so long, but I have been like a pressure cooker and had to vent - if you gave up reading this I don't blame anyone.
I will be in "the neighborhood" as often as I can - sometimes I am only able to turn my computer on a couple times a week so, unfortunately, the research is a bit slow.
Bless you all, and I wish you and yours the very best of health and happiness.
Edna
Can't believe how this MC has changed my life - I have been wondering what the heck just happened to me? I have been healthy as a horse for the past 59 years until - WHAM - I thought I was done for. All these years I have taken pride in my 5 great day a week meaningful, office job. And I was home on weekends chopping and stacking wood and gardening, pushing myself to the limit - then one morning late last fall I went to bed and couldn't get up for 3 days - sheer exhaustion. I said, "whew - I better buy a wood splitter and I did - thinking maybe cortisol was the culprit and I had just overworked my body???
Then the diarrhea struck with a vengeance some weeks later, and you know the rest. Strange, I had no real warning and wonder if any one does? I do know that prior to the "bomb" going off, I started having these real anxious feelings and started obsessing over STUPID little things and knew something was really wrong with me. Went to the Dr. and she put me on Zoloft and told me I was depressed. Told her, "no - I'm NOT depressed - I'm really, REALLY, anxious for no reason at all." (Normally I'm happy go lucky all the time.) Back and forth with her and I finally gave up. She diagnosed me as depressed - which almost made me depressed...
Then, (still prior to the D onslaught) uncontrollable sneezing and asthma started out of the blue. I had stopped my allergy shots a year prior but had a gut feeling it wasn't just my usual allergies because my usual allergy pills DID NOT WORK - AT ALL. I was very concerned and quizzed my allergist over and over, and she couldn't figure it out so put me back on shots.... And all this time, prior to the start of the extreme D, my stomach had this gnawing feeling all the time, just behind my navel. I couldn't figure out - like something chewing away in there. And my stomach made weird, loud, animal noises all the time too and I wondered what the heck was going on. One night my stomach woke me up and I thought there was a wild animal outside my bedroom window - actually scared me until it did it again and i realized it was my stomach...
To go back a bit: Back in the spring of 2017 I was eating a small tub of potato salad and found a piece of a floor mop in it when I was almost half way thru the little tub. I knew that was going to be really bad for me (the store that made it admitted it and gave me $20 gift card to shut up) so I started taking colloidal silver for a couple weeks then stopped hoping that might take care of any loose germs, etc.. I didn't start back up again until the diarrhea hit many months later - not knowing what else to do. Not sure if the floor mop potato salad started all this, or the extreme work I had been doing on weekends when my body really wasn't up to it (Weekend Warrior thing). I guess it doesn't really matter now what caused this, but I am curious because I have gone from a healthy, strong, 5 ft. 7 in., 137 lb. (most of my adult life at this weight - I love to eat and eat like a bear; and healthy stuff too, BTW) woman to a frail-looking and feeling 124 lb. weakling. Prior to my MC diagnosis, my PCP said losing 13 lbs. in 2 mos. was no big deal; that I was just one of the "lucky ones" that could eat what they wanted and didn't gain weight. I told her I don't usually gain or lose weight and can't afford to lose 13 lbs. but she just said she was envious - don't worry about it. What a MAROON!!!!!
After Dr. Colon broke the news to me about the MC (as well as the lesion on my pancreas that showed up on the CT scan -"Likely, IPMN" the report said - another unwelcome finding since my Grandmother died of pancreatic cancer....what the HECK, I say??!!!), I asked him what foods I should avoid, and he said I could eat anything I want as long as it doesn't bother me. He and my PCP were made for each other... He put me on 3 months of Budesonide 3 mg. - I have a couple weeks to go and will be done with it.
Luckily, prior to my diagnosis, I had already stopped all gluten and most sugars and dairy, so symptoms subsided after a bit with a couple bad relapses that were bad enough I couldn't do my usual shoveling, snow-blowing, roof raking, wood hauling, etc. and missed work, AGAIN - grrrrr. Scary, frustrating, stuff it tis....
Anyway, I have ordered Tex's updated MC book and will be relieved to read something focusing on MY condition!! Thank you, Tex - you are an ANGEL on Earth. What would we DO without you?!! All I have been doing is googling, and talking to people that have their own colon issues (none with MC) and lyme, and autoimmune issues, and I have spent so much $ on food and thrown so much out and seems I am always so hungry no matter how much I eat and don't know why..... I am glad you said meat and over cooked veggies are OK because I CRAVE meat - more in the past couple years than ever, for some reason. So that is a good thing.
A final issue: I was diagnosed with lichen sclerosis a couple years ago. That was the 1st real eyeopener that maybe I'm not as healthy as I thought I was...also makes me feel I have lost the femininity I always took for granted. Has made me very sad. I am single, and no man is going to put up with that. I found that out the hard way. So, honestly, I got discouraged and gave up on that also. Has broken my heart.
I have been in a whirlpool with no real direction and although I have learned quite a bit about autoimmune issues, I still feel I have been wasting precious time...my poor body - I wondered what did I do to it?? What should I do....?? Then, the Divine intervened and here I am - FINALLY some direction and people "like me" (sorta!). Thank You, THANK YOU so much for this wonderful, Blessed, site....
I have read a lot of posts and have a lot more to read and have a lot of questions, still. I am sorry this post is so long, but I have been like a pressure cooker and had to vent - if you gave up reading this I don't blame anyone.
I will be in "the neighborhood" as often as I can - sometimes I am only able to turn my computer on a couple times a week so, unfortunately, the research is a bit slow.
Bless you all, and I wish you and yours the very best of health and happiness.
Edna
Hi Edna,
Welcome to the group. I was about your age when MC caught up with me, and I too thought at first that I would't be able to live but a few years longer before my heart would give out from the weight loss, dehydration and malnutrition. Fortunately I eventually figured out what was wrong and changed my diet.
I finally figured out what caused it — magnesium deficiency. I was already taking a magnesium supplement, but it obviously was not enough. MC depletes magnesium, so I was probably already deficient. The preceding year, I started drinking coffee (coffee depletes magnesium). Then after the symptoms were already bad enough, three antibiotic regimens in a row for some dental work had apparently finished off what was left of my magnesium reserves and my symptoms became severe. I've never taken budesonide, but incidentally, it also depletes magnesium.
I described my problem to several doctors and none of them had a clue, so it went on for several months. One morning it was so bad that I couldn't eat breakfast, so I went to the ER. I noticed that my serum magnesium test was flagged as low by the lab, but the doctors ignored that, and said everything looked good.
I went home and tripled my magnesium supplement. The next night, I slept like a baby. Case cured.
As a group, we're typically self-starters, perfectionists, and over-achievers. But this disease definitely teaches us to shift down a gear or two. At any rate, again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I was about your age when MC caught up with me, and I too thought at first that I would't be able to live but a few years longer before my heart would give out from the weight loss, dehydration and malnutrition. Fortunately I eventually figured out what was wrong and changed my diet.
This caught my eye, because it happened to me a few years ago. I would wake up in the wee hours of the morning with the symptoms of a panic attack. But I wasn't having a panic attack, I was only having the symptoms. I was suddenly anxious as all get out, for no obvious reason. After I ate breakfast, it would fade away until the wee hours of the next morning, then it would start over again, night after night.I do know that prior to the "bomb" going off, I started having these real anxious feelings and started obsessing over STUPID little things and knew something was really wrong with me. Went to the Dr. and she put me on Zoloft and told me I was depressed. Told her, "no - I'm NOT depressed - I'm really, REALLY, anxious for no reason at all." (Normally I'm happy go lucky all the time.)
I finally figured out what caused it — magnesium deficiency. I was already taking a magnesium supplement, but it obviously was not enough. MC depletes magnesium, so I was probably already deficient. The preceding year, I started drinking coffee (coffee depletes magnesium). Then after the symptoms were already bad enough, three antibiotic regimens in a row for some dental work had apparently finished off what was left of my magnesium reserves and my symptoms became severe. I've never taken budesonide, but incidentally, it also depletes magnesium.
I described my problem to several doctors and none of them had a clue, so it went on for several months. One morning it was so bad that I couldn't eat breakfast, so I went to the ER. I noticed that my serum magnesium test was flagged as low by the lab, but the doctors ignored that, and said everything looked good.
I went home and tripled my magnesium supplement. The next night, I slept like a baby. Case cured.
As a group, we're typically self-starters, perfectionists, and over-achievers. But this disease definitely teaches us to shift down a gear or two. At any rate, again, welcome aboard, and please feel free to ask anything.
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.
Hi Tex,
Thank you so much for the "welcome" and your speedy response! This is my first forum so I'm not very well oriented so pardon me if I posted in the wrong forum (I think I did)...
I am so sorry you have been so sick! Seems you have come such a long way, and how kind of you to set up this forum for us so we can all heal together - mentally and spiritually, as well as physically.
Anyway, I did read what you all posted about magnesium but I'm not sure if what I am taking is one of the good or bad ones: I take (one a day as is directed), Solaray Magnesium 200 mg., "Full range amino acid chelate in an herb base" Says it's Magnesium (As Magnesium Amino Acid Chelate, Magnesium Oxide)". Other ingredients are, Vegetable cellulose capsule, Magnesium Stearate, Organic Alfalfa and Parsley. Also says it is reacted with whole rice, not soy.
I will admit, none of that means a thing to me and didn't ring a bell from those on your list. Is this OK or nay? And if OK - is one a day enough for me do you think?
Thank you, thank you, so much again, Tex. I can't believe I finally have an honest to goodness, intelligent, "MC - knowledgeable", ally! I can't stress enough what a HUGE comfort this is, you know. Clearly, you are a TRULY caring soul.
And your last comment resounded with me about most of "us" being self starters, perfectionists, etc. - hard to change our ways, but critical that we do, isn't it?? I am learning to let go more and more but a long way from being "there".
I hope this evening finds YOU well.
Good night, for now....
Edna
Thank you so much for the "welcome" and your speedy response! This is my first forum so I'm not very well oriented so pardon me if I posted in the wrong forum (I think I did)...
I am so sorry you have been so sick! Seems you have come such a long way, and how kind of you to set up this forum for us so we can all heal together - mentally and spiritually, as well as physically.
Anyway, I did read what you all posted about magnesium but I'm not sure if what I am taking is one of the good or bad ones: I take (one a day as is directed), Solaray Magnesium 200 mg., "Full range amino acid chelate in an herb base" Says it's Magnesium (As Magnesium Amino Acid Chelate, Magnesium Oxide)". Other ingredients are, Vegetable cellulose capsule, Magnesium Stearate, Organic Alfalfa and Parsley. Also says it is reacted with whole rice, not soy.
I will admit, none of that means a thing to me and didn't ring a bell from those on your list. Is this OK or nay? And if OK - is one a day enough for me do you think?
Thank you, thank you, so much again, Tex. I can't believe I finally have an honest to goodness, intelligent, "MC - knowledgeable", ally! I can't stress enough what a HUGE comfort this is, you know. Clearly, you are a TRULY caring soul.
And your last comment resounded with me about most of "us" being self starters, perfectionists, etc. - hard to change our ways, but critical that we do, isn't it?? I am learning to let go more and more but a long way from being "there".
I hope this evening finds YOU well.
Good night, for now....
Edna
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Gabes-Apg
- Emperor Penguin
- Posts: 8343
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Edna
welcome to the group! and sympathies that you had to find us
and for embracing your first forum - very brave of you. I will mention that this group is very unique compared to most forums, the group here are wonderful caring people, more than that they are trusted friends.
and my sympathies regarding the lichen sclerosis, I too have this, and understand your emotions about feminity being taken away. coupled with the MC it can make some days tough. I was age 40 when diagnosed with the MC and 43 with the lichen sclerosis. ( i am now 48)
long story short - the LS is autoimmune like the MC, the eating and lifestyle plans we recommend for the MC will help reduce the inflammatory nature of the LS. some learnings from my 8 years of life with MC and healing journey that may help
- the underwear liners and diapers I wore as protection for MC accidents and leaks exacerbated the LS - (the chemicals in the liners are the issue) i now use strips of cotton on top of the liners so there is no skin contact
- I use steroid cream when there is LS flares, other times i use natural organic moisterisers like Shea Butter or lanolin on the skin.
- post shower, use a fan/cool air to dry skin before using creams
- do not use commercial wipes on the skin. if you need to use this type of thing for MC issues, make home made ones with cotton cloth soaked in water and coconut oil.
- do not use commercial soaps - use something as pure and natural as possible - organic and GMO free ingredients
inline with your reply to Tex above,
https://perskyfarms.com/phpBB2/viewtopic.php?t=22350
take some long deep breathes, and feel the assurance that you found caring people who can help you on the journey
healing hugs
welcome to the group! and sympathies that you had to find us
and for embracing your first forum - very brave of you. I will mention that this group is very unique compared to most forums, the group here are wonderful caring people, more than that they are trusted friends.
and my sympathies regarding the lichen sclerosis, I too have this, and understand your emotions about feminity being taken away. coupled with the MC it can make some days tough. I was age 40 when diagnosed with the MC and 43 with the lichen sclerosis. ( i am now 48)
long story short - the LS is autoimmune like the MC, the eating and lifestyle plans we recommend for the MC will help reduce the inflammatory nature of the LS. some learnings from my 8 years of life with MC and healing journey that may help
- the underwear liners and diapers I wore as protection for MC accidents and leaks exacerbated the LS - (the chemicals in the liners are the issue) i now use strips of cotton on top of the liners so there is no skin contact
- I use steroid cream when there is LS flares, other times i use natural organic moisterisers like Shea Butter or lanolin on the skin.
- post shower, use a fan/cool air to dry skin before using creams
- do not use commercial wipes on the skin. if you need to use this type of thing for MC issues, make home made ones with cotton cloth soaked in water and coconut oil.
- do not use commercial soaps - use something as pure and natural as possible - organic and GMO free ingredients
inline with your reply to Tex above,
it takes time - in our guidelines to recovery there are some good resources of good reads, podcasts etc that can help with the emotional and mental part of the healing journeyhard to change our ways, but critical that we do, isn't it?? I am learning to let go more and more but a long way from being "there".
https://perskyfarms.com/phpBB2/viewtopic.php?t=22350
take some long deep breathes, and feel the assurance that you found caring people who can help you on the journey
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
Edna,
The product you're using contains magnesium oxide. Magnesium oxide contains a lot of magnesium, but unfortunately we can only absorb about 2 to 3 % of it, so it's pretty much worthless as a supplement. Some brands use it because it allows them to produce a much cheaper magnesium supplement. Vitacost was sued (and lost) several years ago in a class action suit because they were selling their product as "Buffered" magnesium chelate. Someone discovered that about 50 % of the product was magnesium oxide, so their customers were actually getting about half as much useful magnesium as they thought they were getting. The reason I know this is because this is the product that I had been using for years when I became magnesium deficient, so I'm proof that it doesn't work. Magnesium oxide makes a good laxative, but it doesn't work as a supplement.
My doctor wanted to prescribe an antidepressant also. The drug companies sell a tremendous amount of antidepressants to treat magnesium deficiency.
Tex
The product you're using contains magnesium oxide. Magnesium oxide contains a lot of magnesium, but unfortunately we can only absorb about 2 to 3 % of it, so it's pretty much worthless as a supplement. Some brands use it because it allows them to produce a much cheaper magnesium supplement. Vitacost was sued (and lost) several years ago in a class action suit because they were selling their product as "Buffered" magnesium chelate. Someone discovered that about 50 % of the product was magnesium oxide, so their customers were actually getting about half as much useful magnesium as they thought they were getting. The reason I know this is because this is the product that I had been using for years when I became magnesium deficient, so I'm proof that it doesn't work. Magnesium oxide makes a good laxative, but it doesn't work as a supplement.
My doctor wanted to prescribe an antidepressant also. The drug companies sell a tremendous amount of antidepressants to treat magnesium deficiency.
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.
Tex and Gabes - THANK YOU BOTH SO MUCH for your input and advice!! I have learned so much and am comforted greatly, already!
Tex: Not much to say about the mg I'm taking except, IT FIGURES. Thanks for the head's up on that! I keep getting cramps in both my lower legs and feet almost nightly (drives me out of bed to my feet!), so I assumed SOMETHING was wrong with the mg (thought it was supposed to help with cramps too?). Also eating a banana daily... I dunno- got worse issues to figure out...
So interesting, as you mentioned earlier, that low magnesium affects mood and MC drains mg levels - so that is why I felt like I was completely losing my marbles prior to the MC D & nausea, etc. My whole system was screwed up!!
I have also wondered about the non-stop sneezing bouts and asthma that also started up prior to the MC D, etc. - I do have allergies & asthma but things HAD been WELL under control and then "BANG" - I couldn't get relief! I read somewhere that some colon issues can set off allergies and asthma. I asked the emergency room Dr. about it and she said, probably that had something to do with my (undiagnosed at that time) colon issue (I liked her - she had common sense!). Anyway, I had to start the allergy shots but can't help but wonder if it may have straightened out on it's own with my diet, etc. changes.
I told you about my disgusting "mop potato salad" story because I thought maybe that got the "MC party" started - I read somewhere (in here??) MC is sometimes triggered by bacteria, viruses, etc.. I don't know about that either. Guess it doesn't matter - no sense in looking back, now - only forward...
Gabes, if you're still here: I'm sorry to hear you have suffered with these afflictions for so long - you are so young (& too sweet) to have been through so much already. I consider myself very lucky I have been free of issues up 'til now - and that I have such a wonderful support group now, also - no longer "alone" with the nightmare.
I went to a dermatologist that specializes in LS and she did tell me LS was autoimmune (but she DIDN'T recommend excluding inflammatory foods, so I kept on eating everything that was hurting me). She looked at it and said it WASN"T LS as my gyn claimed - she said it was ATROPHY- from lack of use (9 yrs. waiting for my Prince. Still waiting - still atrophied.) I don't have ANY of the usual LS symptoms thankfully(!!) but next visit, I brought the lab report from the biopsy to show her, and it said "LS". So, we can't figure that one out, and I still don't believe it is, but again, what does it matter I guess. Another of life's mysteries, but I am curious how accurate those LS biopsies are?? Most importantly, like you said, I have gotten rid of all the chemical soaps, cleaners, etc. so my body doesn't have to fight those things any more. I will keep everything in mind that you shared - all still useful and SO VERY MUCH APPRECIATED.
I am wondering if either of you can tell me why I eat so much and still feel hungry? Do us folks with MC also have leaky gut as a result?? I drink a protein shake almost every morning (Spirutien) with coconut milk, flax, banana, almond and p. butter, cinnamon, etc. hoping that is getting some nutrients into me if whole food isnt'. Like I mentioned, I'm slim to skinny naturally, anyway - have ALWAYS eaten a lot - and lost 13 lbs. in 2 mos. during the onset of "the episode" but get RAVENOUS at times. I have to eat 3 times a day and snack in between.
Finally, (lucky for you) also, embarrassingly, my stools smell very strong, like bad turnip most of the time - and I KNOW that is not right. I am eating better than ever, so why the strong smell that lingers long after a BM? (Thank goodness for this forum - so I can ask these awful questions without feeling like I'm creeping anyone out - I hope I'm not anyway?!!!)
Will let you both go, now. Thank you for listening and assisting. You are Angels on Earth you know. I respect you and appreciate you more than you know...
Goodnight, for now, and biggest hugs back to you!!
Edna
Tex: Not much to say about the mg I'm taking except, IT FIGURES. Thanks for the head's up on that! I keep getting cramps in both my lower legs and feet almost nightly (drives me out of bed to my feet!), so I assumed SOMETHING was wrong with the mg (thought it was supposed to help with cramps too?). Also eating a banana daily... I dunno- got worse issues to figure out...
So interesting, as you mentioned earlier, that low magnesium affects mood and MC drains mg levels - so that is why I felt like I was completely losing my marbles prior to the MC D & nausea, etc. My whole system was screwed up!!
I have also wondered about the non-stop sneezing bouts and asthma that also started up prior to the MC D, etc. - I do have allergies & asthma but things HAD been WELL under control and then "BANG" - I couldn't get relief! I read somewhere that some colon issues can set off allergies and asthma. I asked the emergency room Dr. about it and she said, probably that had something to do with my (undiagnosed at that time) colon issue (I liked her - she had common sense!). Anyway, I had to start the allergy shots but can't help but wonder if it may have straightened out on it's own with my diet, etc. changes.
I told you about my disgusting "mop potato salad" story because I thought maybe that got the "MC party" started - I read somewhere (in here??) MC is sometimes triggered by bacteria, viruses, etc.. I don't know about that either. Guess it doesn't matter - no sense in looking back, now - only forward...
Gabes, if you're still here: I'm sorry to hear you have suffered with these afflictions for so long - you are so young (& too sweet) to have been through so much already. I consider myself very lucky I have been free of issues up 'til now - and that I have such a wonderful support group now, also - no longer "alone" with the nightmare.
I went to a dermatologist that specializes in LS and she did tell me LS was autoimmune (but she DIDN'T recommend excluding inflammatory foods, so I kept on eating everything that was hurting me). She looked at it and said it WASN"T LS as my gyn claimed - she said it was ATROPHY- from lack of use (9 yrs. waiting for my Prince. Still waiting - still atrophied.) I don't have ANY of the usual LS symptoms thankfully(!!) but next visit, I brought the lab report from the biopsy to show her, and it said "LS". So, we can't figure that one out, and I still don't believe it is, but again, what does it matter I guess. Another of life's mysteries, but I am curious how accurate those LS biopsies are?? Most importantly, like you said, I have gotten rid of all the chemical soaps, cleaners, etc. so my body doesn't have to fight those things any more. I will keep everything in mind that you shared - all still useful and SO VERY MUCH APPRECIATED.
I am wondering if either of you can tell me why I eat so much and still feel hungry? Do us folks with MC also have leaky gut as a result?? I drink a protein shake almost every morning (Spirutien) with coconut milk, flax, banana, almond and p. butter, cinnamon, etc. hoping that is getting some nutrients into me if whole food isnt'. Like I mentioned, I'm slim to skinny naturally, anyway - have ALWAYS eaten a lot - and lost 13 lbs. in 2 mos. during the onset of "the episode" but get RAVENOUS at times. I have to eat 3 times a day and snack in between.
Finally, (lucky for you) also, embarrassingly, my stools smell very strong, like bad turnip most of the time - and I KNOW that is not right. I am eating better than ever, so why the strong smell that lingers long after a BM? (Thank goodness for this forum - so I can ask these awful questions without feeling like I'm creeping anyone out - I hope I'm not anyway?!!!)
Will let you both go, now. Thank you for listening and assisting. You are Angels on Earth you know. I respect you and appreciate you more than you know...
Goodnight, for now, and biggest hugs back to you!!
Edna
Edna,
Yes, enough of the right kind of magnesium will stop those leg and foot cramps. Bananas actually don't contain all that much magnesium.
We all have leaky gut. It's triggered by the gluten sensitivity. Then all of the other food sensitivities are a result of the leaky gut. It's a self-perpetuating cycle until we change our diets to eliminate the inflammation.
Our immune system wastes most of our energy fighting the inflammation when MC is active, leaving us short of energy for doing work. The inflammation associated with MC causes malabsorption of many nutrients, so we have to eat more if we intend to keep working. The inflammation compromises the ability of our small intestine to produce the enzymes we need to digest many foods (especially carbs), so we end up unable to digest larger meals because we run out of enzymes. We usually do better if we eat smaller, more frequent meals.
The especially bad odor is a side effect of the poor digestion and opportunistic bacteria species that take advantage of the partially-digested and undigested food. They ferment it in our gut, causing the odor.
Most protein drinks (Boost, Encore, Ensure, etc.) contain many ingredients that most of us cannot tolerate. Whole foods are usually a better (safer) choice.
It would be pretty tough to creep out anyone here — we've experienced virtually everything that this disease can do, ourselves.
Tex
Yes, enough of the right kind of magnesium will stop those leg and foot cramps. Bananas actually don't contain all that much magnesium.
We all have leaky gut. It's triggered by the gluten sensitivity. Then all of the other food sensitivities are a result of the leaky gut. It's a self-perpetuating cycle until we change our diets to eliminate the inflammation.
Our immune system wastes most of our energy fighting the inflammation when MC is active, leaving us short of energy for doing work. The inflammation associated with MC causes malabsorption of many nutrients, so we have to eat more if we intend to keep working. The inflammation compromises the ability of our small intestine to produce the enzymes we need to digest many foods (especially carbs), so we end up unable to digest larger meals because we run out of enzymes. We usually do better if we eat smaller, more frequent meals.
The especially bad odor is a side effect of the poor digestion and opportunistic bacteria species that take advantage of the partially-digested and undigested food. They ferment it in our gut, causing the odor.
Most protein drinks (Boost, Encore, Ensure, etc.) contain many ingredients that most of us cannot tolerate. Whole foods are usually a better (safer) choice.
It would be pretty tough to creep out anyone here — we've experienced virtually everything that this disease can do, ourselves.
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.
Welcome Edna,
I have been pondering making this suggestion since I have been using the product for a week now and am having really great results, but wonder if it may help here an there especially the likes of the Lichen Sclerosus....it is Nano Silver Biotics liquid and/or Gel. I have used the gel on a deep cardboard cut on my thumb and it literally healed in 3 days, I was so impressed, almost in disbelief actually. I read where this can be applied to the sensitive areas of our bodies too so I looked it up and sure enough it treats Vaginitis....I initially started the Nano silver to start removing Candida Yeast from my body....I have also starting taking S Boulardii in hopes that it will help remove unwanted bacteria in my small intestine and work with this Nano Silver to help create a better gut environment.
I can say I am noticing much more improved stools than I have ever had in the last 3 years, so something is leaving the body and my gut is responding to these two products I have introduced. Oh and I am also bumping up my stomach acid by taking a HCL Betaine at lunch and dinner time....and that I feel is working also!
I just wanted to welcome you here and give my two cents worth...there is still lots of homework as far as diet and mental strategy to work on with LC, but it's all worth it
I have been pondering making this suggestion since I have been using the product for a week now and am having really great results, but wonder if it may help here an there especially the likes of the Lichen Sclerosus....it is Nano Silver Biotics liquid and/or Gel. I have used the gel on a deep cardboard cut on my thumb and it literally healed in 3 days, I was so impressed, almost in disbelief actually. I read where this can be applied to the sensitive areas of our bodies too so I looked it up and sure enough it treats Vaginitis....I initially started the Nano silver to start removing Candida Yeast from my body....I have also starting taking S Boulardii in hopes that it will help remove unwanted bacteria in my small intestine and work with this Nano Silver to help create a better gut environment.
I can say I am noticing much more improved stools than I have ever had in the last 3 years, so something is leaving the body and my gut is responding to these two products I have introduced. Oh and I am also bumping up my stomach acid by taking a HCL Betaine at lunch and dinner time....and that I feel is working also!
I just wanted to welcome you here and give my two cents worth...there is still lots of homework as far as diet and mental strategy to work on with LC, but it's all worth it
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Thank you, Erica & Tex for taking the time to give me additional input! I do hope you are both well today! I do have questions & comments for the 2 of you here if you don't mind....
First, Hi Tex - How important and interesting the information you have given me is - THANK YOU so much. I am putting all this info in a Word Document so I can review it from time to time, easily...it's all starting to make sense to me now....a few questions for you please?
1.) Initially, my Gastro Dr. put me on 3 Budesonide/day for a mth, then 2/day another month, and now, I'm on my last couple weeks of 1/day for a mth. Someone posted in here they recommend tapering off longer. It was also recommended to take antihistamines daily for a certain period of time - not sure about this or how long to taper or take the antihistamines (you have to stop sometime).... Do you agree with these?
2.) My Naturopath wanted me to stop taking the Budesonide and wait a few days, then, have bloodwork for: TSH, freeT3, freeT4, TPQ, Thyroglobulin, & Vit D. She also wants me to have a Food Allergy Panel (yay - finally!), a GI stool panel, Adrenal Function Salivary panel, and Complete Hormone Panel. Are there any others you would recommend not listed here? I assume she is probably addressing the "Lichen Sclerosus" (I still don't think I have) as well as the MC.
3.) Don't you think I should wait until a couple weeks or month after I finally stop the Budesonide so the tests will show the "true picture" of what is going on with my system? Isn't the steroid bound to alter the results? This concerns me - I want to get the most bang for my buck since I'm paying for the majority of these tests, and won't really know where things stand until I am DONE with the Budesonide for a while, is this right?
I may be pushing the envelope asking you these questions - if I am I am sorry, but I have to ask someone because I have only been floundering around up until now. Finally, I feel I can find my best direction, but am proceeding with caution til then....
Erica - thank you for the kind welcome and YOUR input as well. Although the lab results said LS, I don't believe it. I still think it's atrophy (which is what my dermatologist that specializes in LS told me initially until she saw the results from my Gyn's biopsy) since no typical symptoms except very pale skin and extreme shrinkage - thank goodness for that!!
Interesting about your experience with the silver. I have MesoSilver Colloidal Silver in my fridge now i was taking prior to my MC diagnosis. I researched it quite a bit and need to do more I think. My main concern was that I assume the silver wouldn't discriminate against only the bad gut bacteria - that it would destroy the good also, so stopped taking it internally. I'm not clear about this, but would like to know! Also, I will look into the s Boulardi (is this not our daily probiotics anyway, or is there not enough in there? Also, I read in here that we should stop taking probiotics with MC as it actually can exacerbate matters? So much to figure out!
I will look into the HCL Betaine you mentioned as well...sure sounds like something is working well for you and I sure appreciate you sharing with me! I see you help a lot of people in here so am pleased you found me too.
Thank you, Tex & Erica - so much. Tex, I hope I'm not wearing you out. I will try to figure out more on my own once I get these big question marks out of my head. Things I have asked you have been on my mind for quite so time and had no one to ask. I thought my Naturopath could help with the MC, but she has no experience with it. That's OK seems she's willing to order the tests I need which my PCP and Gastro Dr. WON'T.
My best to you,
Edna
First, Hi Tex - How important and interesting the information you have given me is - THANK YOU so much. I am putting all this info in a Word Document so I can review it from time to time, easily...it's all starting to make sense to me now....a few questions for you please?
1.) Initially, my Gastro Dr. put me on 3 Budesonide/day for a mth, then 2/day another month, and now, I'm on my last couple weeks of 1/day for a mth. Someone posted in here they recommend tapering off longer. It was also recommended to take antihistamines daily for a certain period of time - not sure about this or how long to taper or take the antihistamines (you have to stop sometime).... Do you agree with these?
2.) My Naturopath wanted me to stop taking the Budesonide and wait a few days, then, have bloodwork for: TSH, freeT3, freeT4, TPQ, Thyroglobulin, & Vit D. She also wants me to have a Food Allergy Panel (yay - finally!), a GI stool panel, Adrenal Function Salivary panel, and Complete Hormone Panel. Are there any others you would recommend not listed here? I assume she is probably addressing the "Lichen Sclerosus" (I still don't think I have) as well as the MC.
3.) Don't you think I should wait until a couple weeks or month after I finally stop the Budesonide so the tests will show the "true picture" of what is going on with my system? Isn't the steroid bound to alter the results? This concerns me - I want to get the most bang for my buck since I'm paying for the majority of these tests, and won't really know where things stand until I am DONE with the Budesonide for a while, is this right?
I may be pushing the envelope asking you these questions - if I am I am sorry, but I have to ask someone because I have only been floundering around up until now. Finally, I feel I can find my best direction, but am proceeding with caution til then....
Erica - thank you for the kind welcome and YOUR input as well. Although the lab results said LS, I don't believe it. I still think it's atrophy (which is what my dermatologist that specializes in LS told me initially until she saw the results from my Gyn's biopsy) since no typical symptoms except very pale skin and extreme shrinkage - thank goodness for that!!
Interesting about your experience with the silver. I have MesoSilver Colloidal Silver in my fridge now i was taking prior to my MC diagnosis. I researched it quite a bit and need to do more I think. My main concern was that I assume the silver wouldn't discriminate against only the bad gut bacteria - that it would destroy the good also, so stopped taking it internally. I'm not clear about this, but would like to know! Also, I will look into the s Boulardi (is this not our daily probiotics anyway, or is there not enough in there? Also, I read in here that we should stop taking probiotics with MC as it actually can exacerbate matters? So much to figure out!
I will look into the HCL Betaine you mentioned as well...sure sounds like something is working well for you and I sure appreciate you sharing with me! I see you help a lot of people in here so am pleased you found me too.
Thank you, Tex & Erica - so much. Tex, I hope I'm not wearing you out. I will try to figure out more on my own once I get these big question marks out of my head. Things I have asked you have been on my mind for quite so time and had no one to ask. I thought my Naturopath could help with the MC, but she has no experience with it. That's OK seems she's willing to order the tests I need which my PCP and Gastro Dr. WON'T.
My best to you,
Edna
Hi Edna
I have learned that silver only pokes bad bacteria it leaves the good bacteria alone because there is a layer around them that the silver can not penetrate. So bad bacteria, Protozoa, fungi, viruses all are vulnerable to silver.
The S Boulardii was not in the professional probiotic I was taking....so I have set that one aside until I grasp how this is attending to the gut for now. So far I’m becoming more impressed as each day passes.
Also a quick comment about the tapering....those that have done it find a 4-6 month taper worked best for them.
Cheers
Erica
I have learned that silver only pokes bad bacteria it leaves the good bacteria alone because there is a layer around them that the silver can not penetrate. So bad bacteria, Protozoa, fungi, viruses all are vulnerable to silver.
The S Boulardii was not in the professional probiotic I was taking....so I have set that one aside until I grasp how this is attending to the gut for now. So far I’m becoming more impressed as each day passes.
Also a quick comment about the tapering....those that have done it find a 4-6 month taper worked best for them.
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
You need to do a long taper because you started the diet late in the treatment. Your chances of relapsing are higher because of that. An antihistamine is almost as effective as budesonide for a week or so after stopping the budesonide. It will help prevent a relapse in many cases.Edna wrote:1.) Initially, my Gastro Dr. put me on 3 Budesonide/day for a mth, then 2/day another month, and now, I'm on my last couple weeks of 1/day for a mth. Someone posted in here they recommend tapering off longer. It was also recommended to take antihistamines daily for a certain period of time - not sure about this or how long to taper or take the antihistamines (you have to stop sometime).... Do you agree with these?
Those tests should cover most of the bases.Edna wrote:2.) My Naturopath wanted me to stop taking the Budesonide and wait a few days, then, have bloodwork for: TSH, freeT3, freeT4, TPQ, Thyroglobulin, & Vit D. She also wants me to have a Food Allergy Panel (yay - finally!), a GI stool panel, Adrenal Function Salivary panel, and Complete Hormone Panel. Are there any others you would recommend not listed here? I assume she is probably addressing the "Lichen Sclerosus" (I still don't think I have) as well as the MC.
A few months of budesonide don't affect the immune system much, but 8 or 10 months of it can begin to suppress the immune system somewhat. Clearing it probably requires close to 2 months if there is a strong effect. One month is probably more than sufficient if you've done a long taper.Edna wrote:3.) Don't you think I should wait until a couple weeks or month after I finally stop the Budesonide so the tests will show the "true picture" of what is going on with my system? Isn't the steroid bound to alter the results? This concerns me - I want to get the most bang for my buck since I'm paying for the majority of these tests, and won't really know where things stand until I am DONE with the Budesonide for a while, is this right?
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8343
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Thank you for your kind words - most main stream doctors/specialists will not suggest diet changes for auto immune issues.Gabes, if you're still here: I'm sorry to hear you have suffered with these afflictions for so long - you are so young (& too sweet) to have been through so much already. I consider myself very lucky I have been free of issues up 'til now - and that I have such a wonderful support group now, also - no longer "alone" with the nightmare.
I went to a dermatologist that specializes in LS and she did tell me LS was autoimmune (but she DIDN'T recommend excluding inflammatory foods, so I kept on eating everything that was hurting me). She looked at it and said it WASN"T LS as my gyn claimed - she said it was ATROPHY- from lack of use (9 yrs. waiting for my Prince. Still waiting - still atrophied.) I don't have ANY of the usual LS symptoms thankfully(!!) but next visit, I brought the lab report from the biopsy to show her, and it said "LS". So, we can't figure that one out, and I still don't believe it is, but again, what does it matter I guess. Another of life's mysteries, but I am curious how accurate those LS biopsies are?? Most importantly, like you said, I have gotten rid of all the chemical soaps, cleaners, etc. so my body doesn't have to fight those things any more. I will keep everything in mind that you shared - all still useful and SO VERY MUCH APPRECIATED.
long story short they follow the protocols of the health system that pays their wages - and majority of those protocols involve medications to treat symptoms. Only functional practitioners will look at 'root cause' rather than take a medication to reduce inflammation, why not minimise the items that cause inflammation in the first place, this is our approach with the guidelines to recovery, gut healing low inflammation eating plan and lifestyle.
a bit like the digestion health journey - whether doctors call it IBS or Colitis - the symptoms are indicators of inflammation in the gut.
the same for conditions like asthma, ezcema. there is a slow acceptance that these health issues are symptoms of inflammation, NOT a health condition on their own.
the same for the sclerosis. the combo of auto immune (excess inflammation) and hormones cause skin issues in genital region. my approach is - doesnt matter what name it has, it is your body telling you that there is excess inflammation
aside from the Mc and the LS - i have had other auto immune issues, and kidney issues during my worst times of excess inflammation ( I spent 12 months chronically ill on temporary disability) the suggestions that we (tex, erica and others here) have worked for many...
and like the banner at the top says, you can get your life back!
hope this helps
healing hugs
so far as getting my life back - check out some of the photos in the 'land downunder' section of the forum (towards the bottom of the main page) you will see me living and loving life!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you, Erica, Tex and Gabes! You have all been so helpful once again in these last posts. I still feel so blessed to have your input - it is a comfort - like a warm, safe, blanket - you have eased my stress level GREATLY, you know and that will also help my healing. I hope this post finds YOU 3 doing VERY WELL.
I finally did some reading in here about mg, and today, I bought Magnesium L-Theonate. I'm so excited to finally be taking mg that will actually HELP me!!
Anyway, you have all gotten me on a good, stable track now, and I have a lot of reading to do - in here, and Tex's book (which was on my doorstep today - yay!!!!) and that is going to take up some time after work each day...
Thanks to you 3 for reading my long posts - I look at them now and still can't believe it, myself - you poor things! Thanks so much for your patience and input.
Wonderful blessings to you all - I will be "following you around in here" and will probably throw a question or 2 at you now and again.
Edna
I finally did some reading in here about mg, and today, I bought Magnesium L-Theonate. I'm so excited to finally be taking mg that will actually HELP me!!
Anyway, you have all gotten me on a good, stable track now, and I have a lot of reading to do - in here, and Tex's book (which was on my doorstep today - yay!!!!) and that is going to take up some time after work each day...
Thanks to you 3 for reading my long posts - I look at them now and still can't believe it, myself - you poor things! Thanks so much for your patience and input.
Wonderful blessings to you all - I will be "following you around in here" and will probably throw a question or 2 at you now and again.
Edna