I'm trying to understand whether being diagnosed with LC means I will have the label of LC/MC forever. Once you have it, is it a chronic disease that can only be interrupted by remissions, but not a cure? When we talk about genes being triggered for MC, does that mean there is an MC-specific gene, or it is simply the food intolerance genes? I understand that my major food intolerances are forever, but could someone like me get a clean colonoscopy and claim that my MC was cured? Does Polly still consider herself as having MC or simply as having food intolerances?
Is MC forever, or can you cure yourself and add MC to your medical history, instead of an always with you diagnosis in remission?
Is MC diagnosis forever?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Look at it this way:
MC is an IBD. The other IBDs include Crohn's, UC, and celiac disease. Do you consider them to be a lifetime diagnosis? Is a Chron's patient who is in remission cured of the disease? Nope. Is a celiac who is in remission cured? Hardly. Neither is an MC patient who is in remission, because as Polly conclusively proved last year, remission that even includes normal mucosal histology can quickly become a fleeting memory.
The absence of clinical symptoms and/or diagnostic markers simply implies remission, because there is no known cure (outside of genetic changes) for any IBD. Even surgery is not a "cure", as any Crohn's patient who has had multiple surgical procedures can tell you.
I don't even have a colon (nor a cecum, nor the last few inches of my terminal ileum), but late yesterday, I decided to try almonds one more time, and I awoke early this morning with serious D.
I've been dealing with the disease for over 12 years now, and outside of diet slips, I've been in remission for over 8 years. If it's not forever, it sure has me fooled. 
Tex
MC is an IBD. The other IBDs include Crohn's, UC, and celiac disease. Do you consider them to be a lifetime diagnosis? Is a Chron's patient who is in remission cured of the disease? Nope. Is a celiac who is in remission cured? Hardly. Neither is an MC patient who is in remission, because as Polly conclusively proved last year, remission that even includes normal mucosal histology can quickly become a fleeting memory.
The absence of clinical symptoms and/or diagnostic markers simply implies remission, because there is no known cure (outside of genetic changes) for any IBD. Even surgery is not a "cure", as any Crohn's patient who has had multiple surgical procedures can tell you.
I don't even have a colon (nor a cecum, nor the last few inches of my terminal ileum), but late yesterday, I decided to try almonds one more time, and I awoke early this morning with serious D.
I've been dealing with the disease for over 12 years now, and outside of diet slips, I've been in remission for over 8 years. If it's not forever, it sure has me fooled. 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.
A gene (or genes) that predispose to MC (other than the genes that predispose to gluten-sensitivity) has not been "officially" defined, though Dr. Fine has published research studies that suggest that all of the DQ genes except for DQ4 are associated with gluten-sensitivity, and are therefore associated with MC.Leah wrote:Bummer for us, huh? What about the gene thing? Is there a known gene for 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.
After numerous comments about nuts I decided to give them up a few months ago. I'm not sure if it's helping but on several times when I ate them out of frustration for variety I definately felt that they bothered me. I alternated almonds and pecans daily. I miss them since they're a good protien source and convenient. However, I do consume large quantities of chocolate almond milk and almond milk and that doesn't seem to be a problem. I enjoyed nutella until I found out soy and dairy are a no-no for me. I find with most of the food that doesn't agree with me, the consequence isn't always D but a general malaise that lasts for days, sometimes an immediate "yuk" feeling as a stomach ache, and eye burning and eye pain. I hope to add them again someday but for now I'll do without.
Interestingly, I don't seem to have any problems with almond milk either, and I can eat Smuckers All Natural Peanut Butter without any problems. The nuts themselves, though, and other brands of peanut butter cause either D, or as you say, GI distress and a generally cruddy feeling.
Tex
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 Z!
That is such a good question! I think Dr. Fine says that the food intolerance predisposition is on the same gene as the MC predispositon. Something (antibiotics, HRT, NSAID, PPI, etc.) flips the "switch" on that gene and problems result. I'm not sure if the gene can ever be switched back, which I guess would mean a cure.
It is possible to treat the symptoms effectively and go into remission with diet and meds, but a cure? Not yet, I'm afraid. As you know I did have a biopsy 10 years after diagnosis that showed no more microscopic colitis, although my 5 year biopsy was still positive. And, as Tex noted, I had a relapse immediately after that "clean" biopsy. So, I guess once the gene switch occurs, the predisposition becomes reality and is always with us.
Hugs,
Polly
That is such a good question! I think Dr. Fine says that the food intolerance predisposition is on the same gene as the MC predispositon. Something (antibiotics, HRT, NSAID, PPI, etc.) flips the "switch" on that gene and problems result. I'm not sure if the gene can ever be switched back, which I guess would mean a cure.
It is possible to treat the symptoms effectively and go into remission with diet and meds, but a cure? Not yet, I'm afraid. As you know I did have a biopsy 10 years after diagnosis that showed no more microscopic colitis, although my 5 year biopsy was still positive. And, as Tex noted, I had a relapse immediately after that "clean" biopsy. So, I guess once the gene switch occurs, the predisposition becomes reality and is always with us.
Hugs,
Polly
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Polly, I was wondering how you were doing with the "no MC anymore." I guess we just have to be very, very careful with what we eat - forever.
Good analogy, Tex. And oh yeah - I can eat the Smuckers Natural PB just fine; not so sure about peanuts even though I've been eating them. I have more half-Normans while eating them so I suppose they're an issue.
Good analogy, Tex. And oh yeah - I can eat the Smuckers Natural PB just fine; not so sure about peanuts even though I've been eating them. I have more half-Normans while eating them so I suppose they're an issue.
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Just to be a devil's advocate...no I'm not in denial, just curious. What if someone with drug-induced MC stops the offending med and gets better, without diet or meds, and never has a relapse. Is drug-induced MC temporary (not a forever diagnosis?). What about our 2 yr old member -- what if undetected celiac was the cause of her MC. If she stays GF and symptomless, does she still have MC when she's 40?
Hi Z!
I recall a few folks folks who dropped in here over the years who seemed to be OK after stopping the offending agent. But very few. I think 2 people were fine after stopping PPIs. There may have been a few who were OK after stopping NSAIDs. Tex, do you remember? But of course, we don't know the longterm followup.
Remember, MC is a "wastebasket" term. It just means that SOMETHING is causing inflammation - and, of course, there are a myriad of causes. Once one is in remission and is avoiding all offenders, there will be no findings of MC on biopsy. Until........there is an new exposure to an offender. In your example of the 2 yr. old, I would say that the predisposition would still be there at 40, although the biopsy could be negative for many years.
Polly
I recall a few folks folks who dropped in here over the years who seemed to be OK after stopping the offending agent. But very few. I think 2 people were fine after stopping PPIs. There may have been a few who were OK after stopping NSAIDs. Tex, do you remember? But of course, we don't know the longterm followup.
Remember, MC is a "wastebasket" term. It just means that SOMETHING is causing inflammation - and, of course, there are a myriad of causes. Once one is in remission and is avoiding all offenders, there will be no findings of MC on biopsy. Until........there is an new exposure to an offender. In your example of the 2 yr. old, I would say that the predisposition would still be there at 40, although the biopsy could be negative for many years.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
That happens all the time. I agree with Polly. We have at least several members in that situation. Of course, they don't post anymore, because they are in stable remission and have no reason to post. Drug-induced MC is the main reason why some doctors are able to claim that they are successful in treating MC. For some individuals, all that is necessary to maintain remission is to stop taking the drug that caused the inflammation, and never take any drug in that family again. The reason why this phenomenon isn't more common, is because if discontinuing the drug that caused the inflammation isn't done soon enough, food sensitivities almost always develop.Zizzle wrote:What if someone with drug-induced MC stops the offending med and gets better, without diet or meds, and never has a relapse. Is drug-induced MC temporary (not a forever diagnosis?).
In such cases, the drug-induced MC is forever, but as long as the patient avoids that family of drugs, the MC will remain dormant.
Sure, she will always have MC. As long as she controls her diet, though, she will remain in remission.Zizzle wrote:What about our 2 yr old member -- what if undetected celiac was the cause of her MC. If she stays GF and symptomless, does she still have MC when she's 40?
Incidentally, celiac disease does not cause MC. Gluten-sensitive enteropathy can cause MC though, just as gluten-sensitive enteropathy can cause just about any autoimmune disease. Please be aware that the medical community equates celiac disease with gluten-sensitive enteropathy, but IMO, they are way off base with that assumption, and it's one of the reasons why they remain so confused about this issue. Gluten-sensitive enteropathy is much more extensive than just celiac disease -- it's associated with an entire spectrum of disorders.
I'm almost positive that undetected celiac disease was the cause of my MC, but so what? It's a moot point now, because in order to stay in remission I have to avoid a number of foods other than just gluten. Once the genes are triggered, it's a whole new ballgame.
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.