Long term effects of untreated MC
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Long term effects of untreated MC
I was just diagnosed with Collagenous Colitis. The dr wants to give me a steroid/anti-inflammatory drug. I choose to not go that route. I wonder what are the long term effects of this disease if it goes untreated. I have had symptoms for three years off and on, directly related to skin issues (itchy rashes) The skin issues have pretty much gone but the CC has not let up for months - some days better than others of course. I did go on an elimination diet about a year ago for 6 months with no concrete relief. I am now eating most everything but keep sugar, gluten, and beans to a minimum.
Hi Tanja,
Welcome to the board. The main long-term risk (other than the inconvenience of having the MC symptoms control our daily life) of not properly treating the disease, is a significantly increased risk of developing additional autoimmune diseases. There is an increased risk of developing non-Hodgkins lymphoma, also, but the overall risk of developing N-H lymphoma is still small, in absolute terms (it's basically the same increased risk associated with untreated celiac disease, and it's due to not preventing the damage done by untreated gluten sensitivity).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. The main long-term risk (other than the inconvenience of having the MC symptoms control our daily life) of not properly treating the disease, is a significantly increased risk of developing additional autoimmune diseases. There is an increased risk of developing non-Hodgkins lymphoma, also, but the overall risk of developing N-H lymphoma is still small, in absolute terms (it's basically the same increased risk associated with untreated celiac disease, and it's due to not preventing the damage done by untreated gluten sensitivity).
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.
Tanja
Another complication is Chronic Inflamation can cause a cascade of inflamatory cytokines that can wreak havoc with your system and spped the aging process. According to Dr. Russell Blaylock MD and many others that report the same long term imflamation left untreated Is what is responsible for many chronic conditions which is why it can lead to further autoimmune diseases and even cancer. I have had a tough case to treat and have already had one fairly serious new condition hit me, chronic recurrent pericarditis which is mostly under control and now I am getting a good hold on the MC. Good luck to you hope you figure it out.
KD
Another complication is Chronic Inflamation can cause a cascade of inflamatory cytokines that can wreak havoc with your system and spped the aging process. According to Dr. Russell Blaylock MD and many others that report the same long term imflamation left untreated Is what is responsible for many chronic conditions which is why it can lead to further autoimmune diseases and even cancer. I have had a tough case to treat and have already had one fairly serious new condition hit me, chronic recurrent pericarditis which is mostly under control and now I am getting a good hold on the MC. Good luck to you hope you figure it out.
KD
Two roads diverged in a wood, and I took the one less traveled by and that has made all the difference.
Robert Frost
Robert Frost
Welcome Tanja.
I couldn't help seeing you say you keep gluten to a minimum. Gluten intolerance is something almost ALL of us have here... even if it's not noticable. It's a very inflammatory food. But for going gluten free to work, you must go completely GF.
WHen You say "untreated", just know that all the drug treatments are temporary and only work on the symtoms while you clean up your diet. The right diet is the only LONG TERM SOLUTION TO MANAGING THIS DISEASE. Read as much as you can on this forum. Tex wrote a book that you might want to buy ( just click on it at the top of this page). It is full of tons od info.
If you want to know for sure what foods are causing your inflammation, check out Entolab's website. If you can afford the tests, they save you a lot of guesswork.
ask as many questions as you need to.
good luck
Leah
I couldn't help seeing you say you keep gluten to a minimum. Gluten intolerance is something almost ALL of us have here... even if it's not noticable. It's a very inflammatory food. But for going gluten free to work, you must go completely GF.
WHen You say "untreated", just know that all the drug treatments are temporary and only work on the symtoms while you clean up your diet. The right diet is the only LONG TERM SOLUTION TO MANAGING THIS DISEASE. Read as much as you can on this forum. Tex wrote a book that you might want to buy ( just click on it at the top of this page). It is full of tons od info.
If you want to know for sure what foods are causing your inflammation, check out Entolab's website. If you can afford the tests, they save you a lot of guesswork.
ask as many questions as you need to.
good luck
Leah
Hello Tanja and welcome,
I was just diagnosed at well. Lots of luck to you, sounds like you're on the right track with GF.
What Tex said was very interesting. I read that this could be genetic, so I was thinking about my mother, how she always had abdominal issues. Always bloated, gassy and she lived on pasta, she was Sicilian, right off the boat. She was never treated, she just lived with her symptoms.... she died from non-Hodgkin lymphoma. Now that's a wake up call!
I was just diagnosed at well. Lots of luck to you, sounds like you're on the right track with GF.
What Tex said was very interesting. I read that this could be genetic, so I was thinking about my mother, how she always had abdominal issues. Always bloated, gassy and she lived on pasta, she was Sicilian, right off the boat. She was never treated, she just lived with her symptoms.... she died from non-Hodgkin lymphoma. Now that's a wake up call!
Thank you everyone. I will research the tests. I guess I'm a little skeptical as I did that elimination diet a while back with no relief. I will definitely go gluten free and then take it from there. My mother is currently dying from a myriad of autoimmune diseases that the drs are throwing drugs at. They have no idea what they are doing. It's difficult to watch. Also a bit scary to know that genetics play a part in all this. I often wonder if it is all psychosomatic. The conditioning that we take on from our parents dig deep.
The problem with the elimination diet is it takes soooo long that people give up. Welcome to the forum, Tanya. I am sorry that it sounds like you have the same problems we all do because its just not a fun disease, but what disease is??
I just sent my test kit to Enterolab last week. I had the genetic panel run because I have two young adult children and a granddaughter. If we can prevent this early on, I'd like to.
I'm sorry your mother is so sick. Tex really has good information about what happens with folks who can't seem to change their diet, as they just acquire more and more autoimmune illnesses. Many of us have more than one disease. He has the stats on how many of us are hypothyroid. It is a very high rate.
Good luck to you as you make this lifestyle change---we're here to help and support.
I just sent my test kit to Enterolab last week. I had the genetic panel run because I have two young adult children and a granddaughter. If we can prevent this early on, I'd like to.
I'm sorry your mother is so sick. Tex really has good information about what happens with folks who can't seem to change their diet, as they just acquire more and more autoimmune illnesses. Many of us have more than one disease. He has the stats on how many of us are hypothyroid. It is a very high rate.
Good luck to you as you make this lifestyle change---we're here to help and support.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
As far as genetics goes....Both my mother and oldest brother have MC. My mother was diagnosed almost 30 years ago. She went into remission for many of those years but has chronic constipation. Recent stress has caused a flair for her and she is alternating between bouts of D and C. My oldest brother was diagnosed about a year and a half ago, he uses Cholestyramine (? sp) to control his symptoms. He tried a GF diet for 6 weeks and said he did not notice any difference so he stopped. When I had my Enterolab testing done I had genetic testing done also and I carry 2 genes for gluten intolerance. That means I got one from each parent. I have tried to educate my family what that means but only one sister and my son listen at all. There is a huge history of allergies in my family so they just chalk up all of their ills on the allergies and do not adhere to any diets strictly like I do. My family is a perfect example of the genetic connection to all of this. We should be studied. Everyone has GI problems ranging from GERD to MC, all os the females have early onset osteopenia and my dad was even diagnosed with osteoporosis at an early age which is rare for males. I have 5 siblings, 13 nices and nephews and both of my parents are still alive but aging fast.
Two roads diverged in a wood, and I took the one less traveled by and that has made all the difference.
Robert Frost
Robert Frost
Hi Tanja. The thing about the elimination diet is that it has to be done completely to work. For some, just taking gluten out helps right away, but for most of us it doesn't. The thing is that if we continue to eat raw fruits and vegetables, acid foods, and fiber foods when our guts are inflamed, we never get that much better from going gluten free. It's like putting sand paper on an open, infected wound. How can that wound heal, even if you are taking antibiotics, when you are rubbing sand paper on it? Once you can get the inflammation down, you can "test" those foods back in.
Dairy is also a HUGE problem for most of us. It's the food that will get to me the most and the fastest.
We all are resistent to this way of eating at first. I mean, who wants to change their diet this much? Maybe doing the Enterolab testing will give you more clarity as to what you should eliminate.
Good luck
Leah
Dairy is also a HUGE problem for most of us. It's the food that will get to me the most and the fastest.
We all are resistent to this way of eating at first. I mean, who wants to change their diet this much? Maybe doing the Enterolab testing will give you more clarity as to what you should eliminate.
Good luck
Leah
I'm so sorry that your mother is suffering from autoimmune problems. I'm sure you wish there is something you can do to help her. My heart goes out to you.
As far as I know, I'm the only one in my family with an autoimmune problem. I have one brother with asthma, but that's the only condition I know of. Neither of my parents had any autoimmune problems, either.
We are having a physical response to a physical product or products we are putting into our bodies. Our task is to determine what products or foods are causing the reactions. Once we can determine that, we are home free, and can get our lives back. It's not in our heads, it's in our gut. Don't let anyone tell you that it's all psychosomatic.
Gloria
As far as I know, I'm the only one in my family with an autoimmune problem. I have one brother with asthma, but that's the only condition I know of. Neither of my parents had any autoimmune problems, either.
Now I have to get on my soap box. Many here have been told by their doctors that it's "all in your head," are given antidepressants, and told there's not much that can be done. I don't buy a word of it. I used to hear that when I had extreme nausea when I was pregnant. My response then is the same as it is for MC. Why would anyone want to have this disease (or extreme nausea)? Do people really think we want to run to the bathroom all day so we can get sympathy?I often wonder if it is all psychosomatic.
We are having a physical response to a physical product or products we are putting into our bodies. Our task is to determine what products or foods are causing the reactions. Once we can determine that, we are home free, and can get our lives back. It's not in our heads, it's in our gut. Don't let anyone tell you that it's all psychosomatic.
Gloria
You never know what you can do until you have to do it.
Oh, you misunderstood me. I KNOW it's real! I am just contemplating the ways we take on disease.
Our conditionings, or ways we are taught to believe, play a part in how we respond to situations in our lives. The nature of Autoimmune diseases is that the body attacks itself. I know that I am the sort of person that internalizes stress. I guess I wonder how much of that plays a part in my body beating itself up. Another person who is more emotionally open and shares their feelings and is easier with mistakes may not be so susceptible to this type of disease. I'm not saying it's right or wrong. We all do something! My husband is a spiritual teacher and one thing he often says is "the awareness IS the healing" or something like that - he's much more poetic than I. (mountsoma.org) If we are aware of what we are doing, how we behave, how we interact with others, how we treat ourselves, that is the first step to healing a situation.
I believe that with any disease - especially one as misunderstood as autoimmune - we need to approach it from every angle possible. Including the necessity of healing the physical body.
Thank you, Gloria.
Tanja
Our conditionings, or ways we are taught to believe, play a part in how we respond to situations in our lives. The nature of Autoimmune diseases is that the body attacks itself. I know that I am the sort of person that internalizes stress. I guess I wonder how much of that plays a part in my body beating itself up. Another person who is more emotionally open and shares their feelings and is easier with mistakes may not be so susceptible to this type of disease. I'm not saying it's right or wrong. We all do something! My husband is a spiritual teacher and one thing he often says is "the awareness IS the healing" or something like that - he's much more poetic than I. (mountsoma.org) If we are aware of what we are doing, how we behave, how we interact with others, how we treat ourselves, that is the first step to healing a situation.
I believe that with any disease - especially one as misunderstood as autoimmune - we need to approach it from every angle possible. Including the necessity of healing the physical body.
Thank you, Gloria.
Tanja
Hi Tanja and !
I can relate to what you say. My doc also wanted me to go on steroids. I declined and went the diet route instead. That was 12 years ago. But it took me almost 9 mos. to see a formed BM initially. Of course, I have a HUGE number of sensitivities, so it took a long time to tease everything out. Even though it may take months to see a normal BM, you should experience gradual improvement in brain fog, aches/pains, fatigue, bloating, and frequency/urgency of BMs.
Good luck finding your path to health!
Love,
Polly
I can relate to what you say. My doc also wanted me to go on steroids. I declined and went the diet route instead. That was 12 years ago. But it took me almost 9 mos. to see a formed BM initially. Of course, I have a HUGE number of sensitivities, so it took a long time to tease everything out. Even though it may take months to see a normal BM, you should experience gradual improvement in brain fog, aches/pains, fatigue, bloating, and frequency/urgency of BMs.
Good luck finding your path to health!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dear Tanja,
So sorry your mum is suffering as well.
Tex has a theory in his book that there is actually no such thing as Autoimmune Disease. If I understand him correctly the immune system may just be reacting to the things we ingest (i.e. from outside ourselves, thus not from inside ourselves or "auto.."). People with the right genes actually correctly recognizes these things (post paleo foods and substances created by the modern food "industry", and some drugs, that are bodies were never designed to eat in the first place) as poison. That is probably everyone on this board and......also..... all people with Celiac disease (Dx and not Dx), MS, Rheumatoid arthritis, Crohn's, UC, Gluten sensitivity, so called "IBS",.....etc .... etc... That's a huge % of humankind (and actually animals like pets and factory fed cattle too).
Now.....here is the confusion....once we do recognize these foods for what they are (and what our distant ancestors never ingested) i.e. poison, our bodies can for a while also mistake things our bodies internally produce that look to the immune system to be similar to such external things (e.g. transglutaminase, which has a similar, but not exactly the same, structure to gluten) as 'poison', which they are not. But once the offending externally ingested poison is removed from the diet, over time our internally produced stuff can stop being attacked by our immune system.
Bottom line......in theory if we can find out what triggers the reaction from what is ingested outside (and that is the hard part to prove and discover) so called autoimmune diseases could be cured.
I am sure Tex will correct me if I have misinterpreted the thinking,
Best wishes and prayers to you and your mother, Ant
So sorry your mum is suffering as well.
Tex has a theory in his book that there is actually no such thing as Autoimmune Disease. If I understand him correctly the immune system may just be reacting to the things we ingest (i.e. from outside ourselves, thus not from inside ourselves or "auto.."). People with the right genes actually correctly recognizes these things (post paleo foods and substances created by the modern food "industry", and some drugs, that are bodies were never designed to eat in the first place) as poison. That is probably everyone on this board and......also..... all people with Celiac disease (Dx and not Dx), MS, Rheumatoid arthritis, Crohn's, UC, Gluten sensitivity, so called "IBS",.....etc .... etc... That's a huge % of humankind (and actually animals like pets and factory fed cattle too).
Now.....here is the confusion....once we do recognize these foods for what they are (and what our distant ancestors never ingested) i.e. poison, our bodies can for a while also mistake things our bodies internally produce that look to the immune system to be similar to such external things (e.g. transglutaminase, which has a similar, but not exactly the same, structure to gluten) as 'poison', which they are not. But once the offending externally ingested poison is removed from the diet, over time our internally produced stuff can stop being attacked by our immune system.
Bottom line......in theory if we can find out what triggers the reaction from what is ingested outside (and that is the hard part to prove and discover) so called autoimmune diseases could be cured.
I am sure Tex will correct me if I have misinterpreted the thinking,
Best wishes and prayers to you and your mother, Ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....