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I was just wondering, so here and there in messages of group members, you sometimes read about how the MC can be away for a couple of months and sometimes even years (I mean without diet, without medication, mostly before they ever got diagnosed). For one to the other moment the disease was there and in the same way, it went away (almost always to return later in life).
Also with Crohn and UC these (temporary) spontaneous remissions are not that rare.
I keep on wondering, how is that possible. With IBD's from one to the other moment the disease is there (active is maybe a better word) and sometimes also the other way around (not active).
Has anyone any idea, what the reason behind these spontaneous remissions can be? Because if we knew that, than maybe we also could figure out what could cure an IBD and what causes (triggers) the MC.
Is it a bacteria (or virus) that triggers it? One that our immune system can beat, but than hides somewhere in our body, waiting for a good moment for another attack? Or are it food intolerances that first come and go and get worse in time? Or a combination of a virus/bacteria and the triggering of genes for food intolerances?
Do we gradually build up our intolerances? Depends it on our genetic predisposition how quick it goes? I mean some people get intolerant to gluten the moment they eat them (6 month old babies) and others get much later in life problems with it (sometimes up to 70 years). Also it is not uncommon that celiac disease starts after for example a pregnancy or after a very emotional life event. But also, with early diagnosed it seems to be less active during the teenager years.
During my high school years in biology lessons the following principle was taught,
Genotype + environment give phenotype. Simple translated we are all the results of the genes we got from both our parents + the environmental influences we are exposed to. I have the impression this also counts for MC. You must have the genes the get it. But there must also be something in your environment to trigger it.
I know I am asking questions that can't be answered, but I can't help that I keep on thinking WHAT is causing my disease? And the whole story sounds very rambling, I know, I was just thinking out loud. But if anyone has any thought on this or want to add anything, please be my guest.
Actually I think we need a new breaktrough in science, a new way of looking at things before we actually can understand a bit more about these auto immune diseases, another way of looking at things, mechanism in the expression and regulation of genes science is unaware of now. But the way regular medicine is looking/studying it now, will never solve it.
Medical research at the moment is based on keeping the people ill thanks to the pharmaceutical industry. We really need a new way of looking at things, will we ever to able to solve lots of our health problems.
what's the mechanism behind a sponteneous remission
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Harma,
You raise the best questions! Spontaneous remissions are indeed fascinating. Of course, as you say, no one knows why they occur.
The infection theory is always interesting to me. Especially with regard to certain bugs, like mycobacteria. They have evolved to be able to withstand most antibiotic attempts to eradicate them. They are so tricky that they can change form - eliminate their outer "wall" or "capsule", which is what is usually targeted by antibiotics, and live/hide within a host cell for protection. Tex and I still believe that mycobacteria (from milk) might be playng a big role in IBD.
With regard to genes, I think there is a lot we need to learn about gene expression. It's true we are given certain genes at conception, but apparently they have "on-off" switches. Certain environmental factors (think infection, toxins, maybe antibiotics, stress, etc.) can alter these switches. The good news is that it may be possible to "undo" the expression of a gene that is making us sick. But we still don't know enough about it. That book I cited recently did prove that relaxation/meditation on a regular basis can alter gene expression for those genes that control health problems due to stress.
I can't agree with you more, that we need a breakthrough, a new paradigm, for looking at disease. Maybe we need to put you in a lab to carry out research!
Thanks for sharing you thoughts and making me think so early in the day!
Love,
Polly
You raise the best questions! Spontaneous remissions are indeed fascinating. Of course, as you say, no one knows why they occur.
The infection theory is always interesting to me. Especially with regard to certain bugs, like mycobacteria. They have evolved to be able to withstand most antibiotic attempts to eradicate them. They are so tricky that they can change form - eliminate their outer "wall" or "capsule", which is what is usually targeted by antibiotics, and live/hide within a host cell for protection. Tex and I still believe that mycobacteria (from milk) might be playng a big role in IBD.
With regard to genes, I think there is a lot we need to learn about gene expression. It's true we are given certain genes at conception, but apparently they have "on-off" switches. Certain environmental factors (think infection, toxins, maybe antibiotics, stress, etc.) can alter these switches. The good news is that it may be possible to "undo" the expression of a gene that is making us sick. But we still don't know enough about it. That book I cited recently did prove that relaxation/meditation on a regular basis can alter gene expression for those genes that control health problems due to stress.
I can't agree with you more, that we need a breakthrough, a new paradigm, for looking at disease. Maybe we need to put you in a lab to carry out research!
Thanks for sharing you thoughts and making me think so early in the day!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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natythingycolbery
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I asked my GI about this before I was discharged in October. He said they have started research into it, but so far its not known why. We will have to keep our eyes open for research into it!
Yet with me I supposed I went into sponteneous remission, however that could be due to several reasons, was it due to the fact that the MC was caught so quickly and as such is still in its early stages? was it due to the anti-depressents and coming off them? was it due to my stress dissapearing?
Yet with me I supposed I went into sponteneous remission, however that could be due to several reasons, was it due to the fact that the MC was caught so quickly and as such is still in its early stages? was it due to the anti-depressents and coming off them? was it due to my stress dissapearing?
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Wow! You're really a heavy thinker, who's willing to think "out of the box", (as we say in this county).Harma wrote:Medical research at the moment is based on keeping the people ill thanks to the pharmaceutical industry. We really need a new way of looking at things, will we ever to able to solve lots of our health problems.
I agree that many/most drug treatments are simply ways to maintain low-level illness, (rather than provide a cure). IOW, they reduce the issues to a "tolerable" level, (by treating symptoms, rather than the source of the problem), without actually eliminating any problems. And, of course, many drugs have side effects, that are subsequently treated with other drugs. 
I agree with Polly that gene expression is the key. Gene expression, as she points out, is apparently controlled by environmental factors, and environmental factors are almost surely the source of influences which generate periods of remission. Of course, epigenetics, (the effects of environmental factors that were imposed upon our recent ancestors, that are passed on to our own epigenes), also plays a significant role, IMO.
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.
If you look at the past, all the things that help us humanity a step forward, we inventions of totally new things. Like for example the discovery of bacteria's (and not just a random punishment of god, what churches were more than happy to let people believe as part of their power, leaving people in fear), the discovery of antibiotics, DNA (before that it was just guessing why we had blond hair and blue eyes like our parents), but also internet. It were always totally new things, that helps the world forward, and they never come from any existing knowledge, but always come from people that think "out of the box" .
For example, steps made in science over the last 500 years, always had to do with a new way of thinking about reality (like that the earth was not flat but round, that we on earth are part of a galaxy and earth is turning around the sun and not the other way around). Another huge step was the last 100 years where we did go from classical physics (like newton who were in their days really pioneers, not only what they discovered and invented but also because they adopted a new way of looking at reality) to a new stage in physics: the quantum physics and only the idea that energy could transform in masse and back... really we won't have our technology today, going to the moon, communicate true internet all of the world, if we were still thinking the earth was flat. I am convinced that we are not going to solve all our problems we are facing at the moment, the over population of the world, the climate change (if you believe in it), how we pollute our environment, our diseases with the attitude, knowledge, way of looking at the world we are doing now. A new way of looking at the world will be needed. But that will come in time. The book Polly you were talking about earlier here in this part is in my view an example of it. I think I might want to read that.
That is also what frustrates me a lot when they (policy makers, politicians) are writing reports and discuss a lot of solving problems that may occur in 50 or 100 years. Like climate change. If history has predicted one thing, than it is that we a. can't predict very well what will happen in the future and b. we are looking with the eyes on now to something that will be in 50 or 100. And really why on earth should we all worry about something that might happen in 100 years. We all will be dead, gone by than!!! I suggest, let’s focus on the problems of NOW and the near future (like the next 10 years). Poverty and hunger in the world, the pollution of now, the spoiling of now. And first solve that, and than start worry about what might happen in 100 years. All that worrying about the long term problems and wanting to solve them has nothing to do with “doing it for our children and our childrens’children”, it has everything to do with passing on to them.
Another thing is, that almost never, is a new invention is done by one person. History sometimes may give that idea, but almost always it is a process of several steps done by several people, one person starts with a theory, the second alternate it a little and adds something to it and the third person comes with what is ready to be called a "brilliant idea". Also a lot of people, who did the greatest invention in the past, were especially in the beginning seen as crazy, useless and sometimes even as dangerous. And nowadays it is the same, for example Dr Fine and his glutentest en gluten story and the rest of the scientific celiac world.
I am reading another book at the moment of Jared Diamond, Collapse, about the collapses of societies in history. It is really interesting and should be mandatory for any political leader and policy advisers. Because what that book shows is that ruining our environment by over consuming is just normal human behavior. The only thing that is different now is that we do it on global scale. For the rest, really nothing new. There are no trees on Eastern Island. You know why?? Because people living there have just used them up, until the last tree, for their normal daily living. What normally happened than, or societies died out (people didn't reproduce or just died) or moved on to another island. Really the whole pollution, deforestation, eating all the fishes out the oceans, climate a change and whatever, the phenomenon is nothing new. What is new is the scale on which it is happening now.
Sorry for all this non MC stuff. But I had to get it off my chest.
For example, steps made in science over the last 500 years, always had to do with a new way of thinking about reality (like that the earth was not flat but round, that we on earth are part of a galaxy and earth is turning around the sun and not the other way around). Another huge step was the last 100 years where we did go from classical physics (like newton who were in their days really pioneers, not only what they discovered and invented but also because they adopted a new way of looking at reality) to a new stage in physics: the quantum physics and only the idea that energy could transform in masse and back... really we won't have our technology today, going to the moon, communicate true internet all of the world, if we were still thinking the earth was flat. I am convinced that we are not going to solve all our problems we are facing at the moment, the over population of the world, the climate change (if you believe in it), how we pollute our environment, our diseases with the attitude, knowledge, way of looking at the world we are doing now. A new way of looking at the world will be needed. But that will come in time. The book Polly you were talking about earlier here in this part is in my view an example of it. I think I might want to read that.
That is also what frustrates me a lot when they (policy makers, politicians) are writing reports and discuss a lot of solving problems that may occur in 50 or 100 years. Like climate change. If history has predicted one thing, than it is that we a. can't predict very well what will happen in the future and b. we are looking with the eyes on now to something that will be in 50 or 100. And really why on earth should we all worry about something that might happen in 100 years. We all will be dead, gone by than!!! I suggest, let’s focus on the problems of NOW and the near future (like the next 10 years). Poverty and hunger in the world, the pollution of now, the spoiling of now. And first solve that, and than start worry about what might happen in 100 years. All that worrying about the long term problems and wanting to solve them has nothing to do with “doing it for our children and our childrens’children”, it has everything to do with passing on to them.
Another thing is, that almost never, is a new invention is done by one person. History sometimes may give that idea, but almost always it is a process of several steps done by several people, one person starts with a theory, the second alternate it a little and adds something to it and the third person comes with what is ready to be called a "brilliant idea". Also a lot of people, who did the greatest invention in the past, were especially in the beginning seen as crazy, useless and sometimes even as dangerous. And nowadays it is the same, for example Dr Fine and his glutentest en gluten story and the rest of the scientific celiac world.
I am reading another book at the moment of Jared Diamond, Collapse, about the collapses of societies in history. It is really interesting and should be mandatory for any political leader and policy advisers. Because what that book shows is that ruining our environment by over consuming is just normal human behavior. The only thing that is different now is that we do it on global scale. For the rest, really nothing new. There are no trees on Eastern Island. You know why?? Because people living there have just used them up, until the last tree, for their normal daily living. What normally happened than, or societies died out (people didn't reproduce or just died) or moved on to another island. Really the whole pollution, deforestation, eating all the fishes out the oceans, climate a change and whatever, the phenomenon is nothing new. What is new is the scale on which it is happening now.
Sorry for all this non MC stuff. But I had to get it off my chest.
and about the expression of genes, I think it is called epi-genetics or at least one part of this new field is called like that. Epi-genetics (well what I know about it) is about how the life’s of your parents, grandparents and maybe even great grand parents can influence the expression of your genes nowadays. For example if your mother or grandmother have experienced a famine during her live, that may affect the expression of certain genes of her daughter and her granddaughters. What I have been reading about it, is that it more goes through the female line, but I am not sure about this. The example I know of is a Swedish research in which they could prove that if the first generation suffered from a famine the second and even third generation had a significant higher rate of diabetes.
I think I want to know more about this epi-genetics. I have a bachelor degree in biotechnology/biochemisty, so I know a little about genetics and DNA. But I left that field 18 years ago and when I finished my study they even never had heard of epi-genetics.
I think I want to know more about this epi-genetics. I have a bachelor degree in biotechnology/biochemisty, so I know a little about genetics and DNA. But I left that field 18 years ago and when I finished my study they even never had heard of epi-genetics.
My GI doc has no clue why I went into remission or how long it will last... or if entocort the second time around .. if the CC comes back again full force.
One thing for sure.. after all of the post colon prep cases he is seeing..he sure isn't suggesting another scope to see what is going on...LOL
Like he said.. he never hears from patients unless they are in trouble again once he has them stable with entocort.. they never call:) Seems no one ever calls the doc when they are ok...
grannyh
One thing for sure.. after all of the post colon prep cases he is seeing..he sure isn't suggesting another scope to see what is going on...LOL
Like he said.. he never hears from patients unless they are in trouble again once he has them stable with entocort.. they never call:) Seems no one ever calls the doc when they are ok...
grannyh
Hi Harma,
I reckon something must cause those spontaneous remissions, and it can't be too far different from the sort of things that causes the spontaneous flares. Finding the something would be very hard.
I remember how it took months for my HRT to cause a flare. I had been letting my diet slip for years before my original diagnosis, so must have been badly deficient in all sorts of things. I wonder if the same thing can happen in reverse. It could be a simple change that affects our immune response, and takes a long time to show up.
For example, vitamin supplementation that is continued for long enough (months+) to raise your blood levels to a point where the body can cope. Or a long standing infection that eventually clears up. Or subtle changes in mineral or toxin intake (going from plastic bottled water to a water filter at work). The sort of things you would have long forgotten about, if you had even registered it as a change. We all change what we eat as a result of the diet. Imagine if carrots became a much larger part of your diet and as a result you slowly slowly got your vitamin A levels up to a level where your mucosa could cope without causing D.
Now, if we all had routine vitamin and mineral studies it might be possible to find the successful factor, but otherwise we have no way of knowing.
Lyn
I reckon something must cause those spontaneous remissions, and it can't be too far different from the sort of things that causes the spontaneous flares. Finding the something would be very hard.
I remember how it took months for my HRT to cause a flare. I had been letting my diet slip for years before my original diagnosis, so must have been badly deficient in all sorts of things. I wonder if the same thing can happen in reverse. It could be a simple change that affects our immune response, and takes a long time to show up.
For example, vitamin supplementation that is continued for long enough (months+) to raise your blood levels to a point where the body can cope. Or a long standing infection that eventually clears up. Or subtle changes in mineral or toxin intake (going from plastic bottled water to a water filter at work). The sort of things you would have long forgotten about, if you had even registered it as a change. We all change what we eat as a result of the diet. Imagine if carrots became a much larger part of your diet and as a result you slowly slowly got your vitamin A levels up to a level where your mucosa could cope without causing D.
Now, if we all had routine vitamin and mineral studies it might be possible to find the successful factor, but otherwise we have no way of knowing.
Lyn
remission
Hi,
I went into remission 4 years ago, and I don't know why. I also got an MC flare in April of last year and have been battling this disease all over again.
I had MC for about 6 years before remission.
I read somewhere, sorry I don't remember the source, that MC runs it's course in about 7 years. So, I figure it will be awhile before I see remission again.
I was on Entocort (one pill a day) for 6 years before remission, and I am on it again or this flare.
I can't think of anything I did that was different to bring on remission, nor do I know why I had a flare. I wish I knew the answer....I am sure I would be very wealthy, if I could figure this one out!
I went into remission 4 years ago, and I don't know why. I also got an MC flare in April of last year and have been battling this disease all over again.
I had MC for about 6 years before remission.
I read somewhere, sorry I don't remember the source, that MC runs it's course in about 7 years. So, I figure it will be awhile before I see remission again.
I was on Entocort (one pill a day) for 6 years before remission, and I am on it again or this flare.
I can't think of anything I did that was different to bring on remission, nor do I know why I had a flare. I wish I knew the answer....I am sure I would be very wealthy, if I could figure this one out!
well, sorry, that was wrong. I was on Prednisone for about 6-8 months or longer, then Imuran for several months, then Entocort (3 pills a day) for a couple of months, then 1 pill a day, then remission...for a total of about 6 years of hell....also when I first was diagnosed, Entocort was not available in the US, and not approved by the FDA. As soon as it was available, I think that was in 2001....I started taking it. Thank heavens for Entocort!
yes that is the puzzling part of spontaneous remission (and to flares again), most people have the idea they don't do anything different. Well won't that be an interesting thing for scientists to figure out?
On the dosage of entocort, from the first day I started medication immediately after the diagnoses I have been on one pill a day. I don't know why a low dose is enough for me and others need 3 pills a day. Another MC mystery.
On the dosage of entocort, from the first day I started medication immediately after the diagnoses I have been on one pill a day. I don't know why a low dose is enough for me and others need 3 pills a day. Another MC mystery.
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MaggieRedwings
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Morning Harma,
"Collapse" is an excellent read and definitely would suggest it to all leaders/politicians.
So far as spontaneous remisssion, I surely cannot address that issue after waiting so many years and being diligent at it, not giving up and finally it seems that I am mostly there. Still will not use the "R" word in relation to myself. No jinxing there.
Love, Maggie
"Collapse" is an excellent read and definitely would suggest it to all leaders/politicians.
So far as spontaneous remisssion, I surely cannot address that issue after waiting so many years and being diligent at it, not giving up and finally it seems that I am mostly there. Still will not use the "R" word in relation to myself. No jinxing there.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Re: remission
Funny you should mention the seven years. My MIL has had flares of chronic idiopathic urticaria (full-body hives) for many decades. She swears she only gets a flare once every seven years. How can that be??? Her streak ended last year when she started dealing with hives on a much more regular basis. She also has Hashimoto's Thyroiditis, IBS, and I suspect celiac, but the every 7 years phenomenon is totally puzzling to me.klhale wrote:I read somewhere, sorry I don't remember the source, that MC runs it's course in about 7 years.