I don't even have a confirmed diagnosis. 7 years ago I started having sudden daily/occasionally nightly explosive D. After several months and several tests my GI doc diagnosed IBS. I lived like that for the next 6+ years, reading and occasionally posting on the IBS BB. Well, my doc retired and I have a new young doc that got a copy of my colonoscopy from nearly 7 years ago and lo and behold it said I had mild collagenous colitis and moderate lymphocytes. I guess my original doc didn't know about MC. I am currently waiting for my appointment for another colonoscopy. Then go from there. In the meantime I have been reading like crazy and found you guys. This really sounds like me although I am better than I was a year ago and I think it is due to some flax seed oil I began taking from a cosmetic company. I used to take 3-4 Immodiums a day before the flax seed oil. I didn't think it was the flax seed oil until recently, I thought my improvement was from the hypnotherapy cd's I have been listening to. After my recent revelation about MC I finally put it together. I guess the flax seed oil helped with the inflammation. At least that's what I think right now. Have any of you had any results from the Omega 3's? I recently started fish oil as well.
Pat
I'm new at this.
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pat,
Welcome! I'm pretty new here, too, so I can't weigh in on the fish oil and omega 3's since I've just started them myself. But there are a number of members here who have lots of experience who I'm sure will be glad to share with what's worked and what hasn't. So glad you found us! Hope you can find what you need here. I would say one of the first things you want to do is get onto a gluten-free diet if you're not already. That made an enormous difference for me, but I've also found that staying away from dairy and soy is helping, too.
Best of luck to you,
Beth
Welcome! I'm pretty new here, too, so I can't weigh in on the fish oil and omega 3's since I've just started them myself. But there are a number of members here who have lots of experience who I'm sure will be glad to share with what's worked and what hasn't. So glad you found us! Hope you can find what you need here. I would say one of the first things you want to do is get onto a gluten-free diet if you're not already. That made an enormous difference for me, but I've also found that staying away from dairy and soy is helping, too.
Best of luck to you,
Beth
Hi Pat,
Welcome to our internet family. A lot of GI docs seem to be ill equipped to handle MC. If they can't figure out what's wrong, or don't understand what the pathologist means when the report indicates CC, LC, or MC, they often call it IBS, (which, of course, is way off base). FWIW, my GI misdiagnosed me, also.
Back before I figured out that gluten was my main problem, I had arthritis so bad in my knees, that I had trouble walking without a cane. My brother recommended that I try flaxseed oil, since that's what vets often prescribe for horses and dogs with knee and hip problems. Within about 2 weeks after starting to take flaxseed oil, my knee problems were almost completely gone. I never stopped taking it, and added glucosamine sulphate, soon after that, and I still take them both, daily, and have no knee nor hip problems.
The flaxseed oil didn't stop the diarrhea, however, nor most of the other symptoms. Removing my food intolerances from my diet, however, eventually did the trick.
MC can't actually be "cured", but the symptoms can certainly be eliminated, and you can achieve remission, and stay in remission, once you work out a program that suits your lifestyle. There are various ways to go about it, using diet, meds, or a combination. We'll try to assist you in any way we can, to help you discover what works best for you, so that you can get your life back. Please feel free to ask anything - we've been there, done that.
It's good to "see" another Texan on the board, though I wish it could be under more pleasant circumstances.
Again, welcome aboard,
Tex (Wayne)
Welcome to our internet family. A lot of GI docs seem to be ill equipped to handle MC. If they can't figure out what's wrong, or don't understand what the pathologist means when the report indicates CC, LC, or MC, they often call it IBS, (which, of course, is way off base). FWIW, my GI misdiagnosed me, also.
Back before I figured out that gluten was my main problem, I had arthritis so bad in my knees, that I had trouble walking without a cane. My brother recommended that I try flaxseed oil, since that's what vets often prescribe for horses and dogs with knee and hip problems. Within about 2 weeks after starting to take flaxseed oil, my knee problems were almost completely gone. I never stopped taking it, and added glucosamine sulphate, soon after that, and I still take them both, daily, and have no knee nor hip problems.
The flaxseed oil didn't stop the diarrhea, however, nor most of the other symptoms. Removing my food intolerances from my diet, however, eventually did the trick.
MC can't actually be "cured", but the symptoms can certainly be eliminated, and you can achieve remission, and stay in remission, once you work out a program that suits your lifestyle. There are various ways to go about it, using diet, meds, or a combination. We'll try to assist you in any way we can, to help you discover what works best for you, so that you can get your life back. Please feel free to ask anything - we've been there, done that.
It's good to "see" another Texan on the board, though I wish it could be under more pleasant circumstances.
Again, welcome aboard,
Tex (Wayne)
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.
Pat.........So glad you found us but I'm really sorry you needed to. I'm quite sure that you will find help here since so many already have and there are some really knowledgeable people here. They have been a lifesaver for me.
Hope you stick around and read, read, read all the good info available here and ask all the questions you can think of. As I said, there are some very knowledgeable people who are willing to help and we have some great "research talent".
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Thanks to you all for your kind words. Tex, the first thing I noticed when I started taking the flaxseed oil was that the arthritis knots on the last joint of my fingers stopped hurting and then as time went by they got smaller and the redness went away. I still have a teeny little bit of red and a teeny little bit of swelling but not pain. No pain is nice!
One of the tests they did back 7 years ago was a gluten intolerance test. And he said that was negative. I've tried a GF diet before and didn't notice an improvement. Maybe I didn't stick with it long enough. Does it take a long time?
I also have another question. A friend is recommending I take a product from Mannatech, called glyconutrients. Have any of you had an experience with it? It seems very expensive.
Thanks for your help!
Pat
One of the tests they did back 7 years ago was a gluten intolerance test. And he said that was negative. I've tried a GF diet before and didn't notice an improvement. Maybe I didn't stick with it long enough. Does it take a long time?
I also have another question. A friend is recommending I take a product from Mannatech, called glyconutrients. Have any of you had an experience with it? It seems very expensive.
Thanks for your help!
Pat
Good Morning Pat,
In general, the classic celiac blood tests that most doctors give for gluten intolerance are not sensitive enough to detect the type of gluten intolerance that we have. Most of us are not full-blown celiacs, and therefore will test negative. Dr. Fine, of Enterolab, in Dallas, is a GI who has MC himself, and he has developed stool tests that will accurately detect food intolerances such as gluten, soy, yeast, casein, etc. His research is so recent, however, that most GIs are not even aware of his work, and refuse to acknowledge that his tests are legitimate. Our experience has been that his tests are extremely accurate.
Anyway, the point is that the classic blood tests are not of much use to people with MC. One of our members, (I believe it was CAMary), created the term "celiac lite", to describe our type of gluten intolerance. Some people respond quickly to a GF diet, while for others, it can take months.
Some of us have other intolerances which must be avoided, in order to achieve complete remission. For example, a high percentage of us are casein intolerant, which means that we must avoid all types of dairy products. Lactose is not the issue here, (though some of us are certainly lactose intolerant), it is the proteins that bother us, casein in milk, gluten in wheat, rye, barley, and oats, zen in corn, etc. Until our gut fully recovers, many of us are intolerant to many foods that we can add back in to our diets, after we heal. Examples are sugars of various types, certain vegetables, such as lettuce, and generally, anything with a relatively high fiber content.
I'm not familiar with either glyconutrients, or Mannatech, so I'll have to look up that information. I don't believe that anyone here has ever mentioned using that particular product. Since many of us have a malabsorption problem, due to intestinal damage, certain supplements may possibly help, (especially B-12), but the problem is that most supplements on the market contain "inert" ingredients that we are intolerant of, and pharmaceutical companies are not required to list the composition of inert ingredients on the label, the way that food companies are. Many of them are beginning to voluntarily list those ingredients, but to my knowledge, there is no law requiring them to do so, so be very careful when using them. The safest route is to call the manufacturer, and ask for that information.
You're very welcome,
Tex
In general, the classic celiac blood tests that most doctors give for gluten intolerance are not sensitive enough to detect the type of gluten intolerance that we have. Most of us are not full-blown celiacs, and therefore will test negative. Dr. Fine, of Enterolab, in Dallas, is a GI who has MC himself, and he has developed stool tests that will accurately detect food intolerances such as gluten, soy, yeast, casein, etc. His research is so recent, however, that most GIs are not even aware of his work, and refuse to acknowledge that his tests are legitimate. Our experience has been that his tests are extremely accurate.
Anyway, the point is that the classic blood tests are not of much use to people with MC. One of our members, (I believe it was CAMary), created the term "celiac lite", to describe our type of gluten intolerance. Some people respond quickly to a GF diet, while for others, it can take months.
Some of us have other intolerances which must be avoided, in order to achieve complete remission. For example, a high percentage of us are casein intolerant, which means that we must avoid all types of dairy products. Lactose is not the issue here, (though some of us are certainly lactose intolerant), it is the proteins that bother us, casein in milk, gluten in wheat, rye, barley, and oats, zen in corn, etc. Until our gut fully recovers, many of us are intolerant to many foods that we can add back in to our diets, after we heal. Examples are sugars of various types, certain vegetables, such as lettuce, and generally, anything with a relatively high fiber content.
I'm not familiar with either glyconutrients, or Mannatech, so I'll have to look up that information. I don't believe that anyone here has ever mentioned using that particular product. Since many of us have a malabsorption problem, due to intestinal damage, certain supplements may possibly help, (especially B-12), but the problem is that most supplements on the market contain "inert" ingredients that we are intolerant of, and pharmaceutical companies are not required to list the composition of inert ingredients on the label, the way that food companies are. Many of them are beginning to voluntarily list those ingredients, but to my knowledge, there is no law requiring them to do so, so be very careful when using them. The safest route is to call the manufacturer, and ask for that information.
You're very welcome,
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.
I wondered what it was in dairy that bothered me. I haven't used dairy, well at least cow milk, in years. I still eat cheese. It is very hard to give up. I was tested for lactose intolerance and it was negative, but he said that the curve was unusual and he couldn't explain it. I' going to look up casein intolerance.
My friend that recommended the glyconutrient said that she had sciatica, her husband had IBS, one son had ADD, another son had allergies, one daughter had depression, another would get sick after every test in college. They are all much better after taking these products. It supposedly makes your body healthier so that your body heals itself. Seems too good to be true. Makes me leary, but curious.
Pat
My friend that recommended the glyconutrient said that she had sciatica, her husband had IBS, one son had ADD, another son had allergies, one daughter had depression, another would get sick after every test in college. They are all much better after taking these products. It supposedly makes your body healthier so that your body heals itself. Seems too good to be true. Makes me leary, but curious.
Pat
Hi again, Pat,
Okay, I read a bunch of the information at Mannatech's web site:
http://www.glycoscience.com/glycoscience/home.wm
While there is a huge amount of techincal jargon there, I found it a little tricky to get to the meat of the issue in their articles. If you go far enough, though, basically, it appears that this is the gist of what they are promoting, with regard to gluconutrients and inflammation:
While that's a very desirable feature for "normal" infections, I'm not so sure that it's a desirable trait, for an autoimmune response, (which applies to MC, according to conventional wisdom). Additionally, increasing the aggressiveness of an already corrupt immune system, would seem to just make the problem worse. IOW, most meds that successfully treat MC, (the corticosteroids), do so by suppressing the immune system, not by enhancing it's activities. Also, as is the problem with most meds, it does not address the original problem, namely, the cause of the inflammation in the first place. It merely helps the immune system to fight it more aggressively, which, presumably, will just cause more inflammation, in the case of an autoimmune response.
Okay, that's the verdict in the situation where MC is considered to be a result of an autoimmune response, (a corrupt attack by the immune system, on the body itself). Some of us, (myself included), question "conventional wisdom", and suspect that the initial cause of MC may be due to a virus, (rather than an autoimmune response), in which case a product such as gluconutrients might not necessarily have a detrimental effect. On the other hand, however, it might not help much either, since viruses are very complex issues to deal with.
I realize that I've probably just confused the issue here, for which I apologize, but that's my 2 cents worth, on the issue of gluconutrients, as related to MC.
Tex
Okay, I read a bunch of the information at Mannatech's web site:
http://www.glycoscience.com/glycoscience/home.wm
While there is a huge amount of techincal jargon there, I found it a little tricky to get to the meat of the issue in their articles. If you go far enough, though, basically, it appears that this is the gist of what they are promoting, with regard to gluconutrients and inflammation:
Soooooooo, unless I am misinterpreting the information on their site, it appears that they are suggesting that neutrophil granulocytes, (commonly known as neutrophils), should be properly nourished, (by the use of Mannotech's products), in order to be more aggressive in attacking a site of inflammation. IOW, they suggest that their "gluconeutrients will make the neutrophils more "robust", so that they will be more likely to leave the bloodstream sooner, in order to attack an invading pathogen.Clearly, good nutrition enables the body to deal more effectively with many pathologic conditions, including inflammation. This concept is supported by our own research in which administration of mannans, polymers of mannose, prevented arthritic flares in rats.1 2 Also, mannose, as well as N-acetylglucosamine, inhibit radical production by neutrophils.3 4 This implies that saccharides limit tissue damage.
While that's a very desirable feature for "normal" infections, I'm not so sure that it's a desirable trait, for an autoimmune response, (which applies to MC, according to conventional wisdom). Additionally, increasing the aggressiveness of an already corrupt immune system, would seem to just make the problem worse. IOW, most meds that successfully treat MC, (the corticosteroids), do so by suppressing the immune system, not by enhancing it's activities. Also, as is the problem with most meds, it does not address the original problem, namely, the cause of the inflammation in the first place. It merely helps the immune system to fight it more aggressively, which, presumably, will just cause more inflammation, in the case of an autoimmune response.
Okay, that's the verdict in the situation where MC is considered to be a result of an autoimmune response, (a corrupt attack by the immune system, on the body itself). Some of us, (myself included), question "conventional wisdom", and suspect that the initial cause of MC may be due to a virus, (rather than an autoimmune response), in which case a product such as gluconutrients might not necessarily have a detrimental effect. On the other hand, however, it might not help much either, since viruses are very complex issues to deal with.
I realize that I've probably just confused the issue here, for which I apologize, but that's my 2 cents worth, on the issue of gluconutrients, as related to MC.
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.
-
harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Hi Pat.
Welcome & glad you could join us!
Best wishes from Alaska..
Joanna
Welcome & glad you could join us!
Best wishes from Alaska..
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Hi Pat,
I suppose it's possible that your colon could heal sufficiently in a month, such that a colonscopy might not reveal an inflammation presence adequate to prompt a pathologist to diagnose MC. We all probably heal at varing rates, and this is uncharted territory. A stool test will show the presence of gluten antibodies up to a year after the initiation of a GF diet, and intuitively, one would assume that if that's the case, then a set of biopsies taken during colonoscopy would also show the markers of MC, but we don't know that to be the case - we can only guess.
Therefore, if you want a legal medical diagnosis of MC, and living with the symptoms of MC for another month does not seem intolerable, then you might want to considering continuing the gluten "challenge", to ensure you will qualify for a valid "test" during the colonscopy.
I wouldn't be at all surprised if you end up with a diagnosis of celiac sprue. In the United States, the average length of time, from the onset of symptoms, until a valid diagnosis is made, is over 11 years, for celiac disease. The doctors are still way out of step with reality, in regard to gluten sensitivity, in this country.
Unfortunately, the biopsies taken during a colonscopy will not serve for a diagnosis of, (or to rule out), celiac disease. The classic diagnosis test for celiac sprue requires biopsies taken from the duodenum, (the proximal third of the small intestine).
Tex
P S Joanna, that's an excellent article, regarding the current status of how the medical profession addresses the gluten sensitivity issue.
I suppose it's possible that your colon could heal sufficiently in a month, such that a colonscopy might not reveal an inflammation presence adequate to prompt a pathologist to diagnose MC. We all probably heal at varing rates, and this is uncharted territory. A stool test will show the presence of gluten antibodies up to a year after the initiation of a GF diet, and intuitively, one would assume that if that's the case, then a set of biopsies taken during colonoscopy would also show the markers of MC, but we don't know that to be the case - we can only guess.
Therefore, if you want a legal medical diagnosis of MC, and living with the symptoms of MC for another month does not seem intolerable, then you might want to considering continuing the gluten "challenge", to ensure you will qualify for a valid "test" during the colonscopy.
I wouldn't be at all surprised if you end up with a diagnosis of celiac sprue. In the United States, the average length of time, from the onset of symptoms, until a valid diagnosis is made, is over 11 years, for celiac disease. The doctors are still way out of step with reality, in regard to gluten sensitivity, in this country.
Unfortunately, the biopsies taken during a colonscopy will not serve for a diagnosis of, (or to rule out), celiac disease. The classic diagnosis test for celiac sprue requires biopsies taken from the duodenum, (the proximal third of the small intestine).
Tex
P S Joanna, that's an excellent article, regarding the current status of how the medical profession addresses the gluten sensitivity issue.
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.
Research the difference between flax seed oil and fish oil. I particularly like www.mayoclinic.com. Do a search on both. It seems fish oil has more properties than flax. I just happened to be using a product from a cosmetic company (Origins) which has flaxseed oil and some other ingredients for inflammation of the skin. I am now taking both. Why not?
Pat
Pat