My theory, and of course this is just a theory, but I have posted it a few times on PP...... is that refractory Celiacs are likely to also have MC with multiple intolerances, IN ADDITION to gluten.
If this theory is correct it explains much of the confusion. It could also help many refractory Celiacs to think outside-the-box and look at other intolerances beyond gluten. e.g. gluten, diary, legumes (including soy) and nightshades.
It also might illustrate why MC is, possibly, a more difficult condition to treat than "classic" Celiac.
best ant
what causes lymphocytic colitis?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi there Aquilegia!
I developed MC (Both CC & LC) after a nasty emergency appedectomy (3.5 hour surgery), which left me with a C. diff infection that almost killed me. My GI doctor did every test in the book, accused me of just wanting pain pills, diagnosed me with IBS, and wanted to put me on a "black box" drug for it. Before I took it, I insisted on another colonoscopy, and got the MC diagnosis. He prescriped Pepto and Asacol. The Pepto did nothing but turn my mouth black, and the Asacol went straight through me.
I am not mad at him. He is a great doctor--he really pulled me through the C. diff., and another doc in his practice saved my godfather's life with a new surgery that only they do. It is just that they are working with limited information.
When I first came to this site, Tex and I went for for a few rounds, too. I thought I knew everything. I got offended, angry, and thought he just didn't want to be challenged.
I was wrong. I learned that we all have different intolerances to food. I refused to believe that I was intolerant to gluten. I had already given up so many other things that I just could not handle the thought of giving up something else. Then I gave it a try, just for the heck of it. For the first time in years, the D stopped. I didn't have to refill my Lomotil script every week. I started gaining weight. My ankles stopped swelling, and much of my joint pain went away. I am now GF, mostly DF, SF, among other things, but it is different for everyone. For instance, I am lactose intolerant, but not casein intolerant, so I can still use lactose-free milk and butter.
My point is, please stick around. I did. One of the reasons the emphasis on a restricted diet is so strong is that with MC, it is often important to get the D stopped by any means necessary, and this strategy often works. It gives the gut time to heal.
I developed MC (Both CC & LC) after a nasty emergency appedectomy (3.5 hour surgery), which left me with a C. diff infection that almost killed me. My GI doctor did every test in the book, accused me of just wanting pain pills, diagnosed me with IBS, and wanted to put me on a "black box" drug for it. Before I took it, I insisted on another colonoscopy, and got the MC diagnosis. He prescriped Pepto and Asacol. The Pepto did nothing but turn my mouth black, and the Asacol went straight through me.
I am not mad at him. He is a great doctor--he really pulled me through the C. diff., and another doc in his practice saved my godfather's life with a new surgery that only they do. It is just that they are working with limited information.
When I first came to this site, Tex and I went for for a few rounds, too. I thought I knew everything. I got offended, angry, and thought he just didn't want to be challenged.
I was wrong. I learned that we all have different intolerances to food. I refused to believe that I was intolerant to gluten. I had already given up so many other things that I just could not handle the thought of giving up something else. Then I gave it a try, just for the heck of it. For the first time in years, the D stopped. I didn't have to refill my Lomotil script every week. I started gaining weight. My ankles stopped swelling, and much of my joint pain went away. I am now GF, mostly DF, SF, among other things, but it is different for everyone. For instance, I am lactose intolerant, but not casein intolerant, so I can still use lactose-free milk and butter.
My point is, please stick around. I did. One of the reasons the emphasis on a restricted diet is so strong is that with MC, it is often important to get the D stopped by any means necessary, and this strategy often works. It gives the gut time to heal.
Saw this just this morning . . . .don't know if it has been posted here before.
http://www.ncbi.nlm.nih.gov/pubmed/16775121
Mary Beth
http://www.ncbi.nlm.nih.gov/pubmed/16775121
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
-
TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Mary-Beth, Tex, Polly or any other person who can translate
can you translate this to layperson speak for me
thanks
can you translate this to layperson speak for me
CONCLUSIONS: MC demonstrates a T(H)1 mucosal cytokine profile with IFNgamma as the predominantly upregulated cytokine, with concurrent induction of nitric oxide synthase and down regulation of IFNgamma-related cell junction proteins. This pattern is similar to that in coeliac disease and suggests that it might represent a response to a luminal antigen.
thanks
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Ant, your theory makes sense to me.
It would be interesting to know whether celiac patients who are diagnosed younger, before a lot of damage to the system, are less likely to develop other sensitivities, and/or MC later on - perhaps a lifelong GF diet would be protective for many.
Probably it's more complex than that, but I think you're pointing in a helpful direction.
Sara
It would be interesting to know whether celiac patients who are diagnosed younger, before a lot of damage to the system, are less likely to develop other sensitivities, and/or MC later on - perhaps a lifelong GF diet would be protective for many.
Probably it's more complex than that, but I think you're pointing in a helpful direction.
Sara
Gabes, and Sara,
I haven't seen that abstract before, so here's my take on it, FWIW:
The research project appears to be sort of a follow-up project for MC, based on an article that was published in Belgium, about 5 and a half years earlier, for Crohn's and UC. With Crohn's or UC, the IFNgamma level apparently decreases in the lamina propria, (LPL produced cytokines), but not in the mucosa, (IEL cytokines, {that is, cytokines produces by intraepithelial lymphocytes}, because these were the same as controls). (A link to that article is provided below.) They measured somewhat different markers, but in general, while the nitric oxide synthase level seems to be consistent for all IBDs, the distinction for MC is in the down regulation of interferon-related cell junction proteins. It appears that this phenomenon may not occur with either Crohn's or UC.
Extrapolating from this, as the integrity of the tight junctions, (also known as zonula occludens), are threatened by the downregulation of cell junction proteins, then another cell junction protein apparently comes into play, (the one discovered about 10 years ago, and labeled zonulin, by Dr. Fasano, et al), and it delivers the coup de grâce.
Anyway, it appears that this distinction is the primary reason why the researchers felt that this marker of MC associates the disease with celiac disease, and why they suggested that the disease may be a response to a luminal antigen, (luminal refers to the interior of the intestines). While this doesn't constitute proof, it's certainly at least a "smoking gun".
http://www.ncbi.nlm.nih.gov/pubmed/11531945
Thanks for the link, Mary Beth.
Tex
I haven't seen that abstract before, so here's my take on it, FWIW:
The research project appears to be sort of a follow-up project for MC, based on an article that was published in Belgium, about 5 and a half years earlier, for Crohn's and UC. With Crohn's or UC, the IFNgamma level apparently decreases in the lamina propria, (LPL produced cytokines), but not in the mucosa, (IEL cytokines, {that is, cytokines produces by intraepithelial lymphocytes}, because these were the same as controls). (A link to that article is provided below.) They measured somewhat different markers, but in general, while the nitric oxide synthase level seems to be consistent for all IBDs, the distinction for MC is in the down regulation of interferon-related cell junction proteins. It appears that this phenomenon may not occur with either Crohn's or UC.
Extrapolating from this, as the integrity of the tight junctions, (also known as zonula occludens), are threatened by the downregulation of cell junction proteins, then another cell junction protein apparently comes into play, (the one discovered about 10 years ago, and labeled zonulin, by Dr. Fasano, et al), and it delivers the coup de grâce.
Anyway, it appears that this distinction is the primary reason why the researchers felt that this marker of MC associates the disease with celiac disease, and why they suggested that the disease may be a response to a luminal antigen, (luminal refers to the interior of the intestines). While this doesn't constitute proof, it's certainly at least a "smoking gun".
Be aware that in this article CD does not stand for celiac disease - it stands for Crohn's disease. The red emphasis is mine, of course.In colonic LPL, a significant proportional decrease of IFN-gamma and IL-2 producing CD3+ cells was observed in patients with CD and UC compared to controls. In ileal LPL, a similar tendency was found although differences were not significant. In IEL no differences in cytokine profiles could be observed. Flow cytometric analysis of intracytoplasmic cytokines at single cell level showed a proportional decrease of IFN-gamma and IL-2 producing T cells in colonic lamina propria in patients with inflammatory bowel disease.
http://www.ncbi.nlm.nih.gov/pubmed/11531945
Thanks for the link, Mary Beth.
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.
-
natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Sara, reversing what you said about celiac patients developing MC, I was diagnosed with MC 8 weeks after I first presented symptoms, and was told that I was likley to develop celiac at some point in the future. I shall, obviously let you all know if this is the case.sarkin wrote:Ant, your theory makes sense to me.
It would be interesting to know whether celiac patients who are diagnosed younger, before a lot of damage to the system, are less likely to develop other sensitivities, and/or MC later on - perhaps a lifelong GF diet would be protective for many.
Probably it's more complex than that, but I think you're pointing in a helpful direction.
Sara
Which, actually, thinking about it, might be why when i was discharged from outpatients in October I was informed that if i lost a lot of weight or had a bad flare of MC again i had to get myself reffered back to the hospital.
Tbh, I am kind of rebelling against the food thing atm. I refuse to change my diet completley. Which possibly doesn't help.
(sorry complete tangent)
'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
Dear Naty, not a tangent at all. That is interesting evidence your doctors are aware of a link between MC and Celiac (chicken or egg/ egg or chicken....IMHO is moot)and was told that I was likely to develop celiac at some point in the future.
Hope all goes OK with you, I am rooting for your academic successes.
Best, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Naty, my sympathies on your rebellion. It is hard to avoid foods perfectly in any case, especially when you don't know exactly which foods are the culprits. Yesterday at my favorite middle-eastern shop, I bought almonds and hazelnuts to make my own nut milks. And of course, on the way out, walked past a lot of foods I've not been thinking about, but once I saw them, I did have a tiny pang...
I think it must be terrifically difficult to work with certain diet restrictions at university. I have much better control over my schedule now than I did 30 years ago as a student (and my budget, and a nicer kitchen... the list goes on and on, before we even get to the "hey, join us for a beer" aspects of student life).
Perhaps it's more accurate to say that MC and CD have common causes, including related but not identical genetics.... and which part of the digestive system gets affected first could depend on a long list of variables.
I'm with Ant in rooting for your successes - health included, of course!
Sara
I think it must be terrifically difficult to work with certain diet restrictions at university. I have much better control over my schedule now than I did 30 years ago as a student (and my budget, and a nicer kitchen... the list goes on and on, before we even get to the "hey, join us for a beer" aspects of student life).
Perhaps it's more accurate to say that MC and CD have common causes, including related but not identical genetics.... and which part of the digestive system gets affected first could depend on a long list of variables.
I'm with Ant in rooting for your successes - health included, of course!
Sara
Naty,
I was told by my GI that the presence of lymphocytes in my small bowel biopsy would seem to indicate a predisposition to future celiac. So, as much as I resent having to deal with dietary changes, have gone GF, LF, SF on a trial basis. I'm not seeing much effect yet; am assuming that the gut needs more time to heal.
I was told by my GI that the presence of lymphocytes in my small bowel biopsy would seem to indicate a predisposition to future celiac. So, as much as I resent having to deal with dietary changes, have gone GF, LF, SF on a trial basis. I'm not seeing much effect yet; am assuming that the gut needs more time to heal.
Suze
-
natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
I'm planning to go down the elimination thing though if/when things take a turn for the worst. At the moment, things seem to be going alright.
'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
Suze,
I hope you start seeing some results soon. As I begin to feel a little better, I'm reluctant to tamper with what seems to be working. I don't feel rebellious, like Naty, but I think that's because I'm old... at university age, one gets told a lot of things to do/not do, so there's more to rebel against ;) I put these restrictions on myself, so only have myself to blame. Or thank.
I'm sure I would feel something more like resentment if I didn't feel some improvement.
It's been very up and down - my worst symptoms stopped quickly, but the lingering fatigue and weakness and brain fog seem to fluctuate.
Hope you're feeling better and better,
Sara
I hope you start seeing some results soon. As I begin to feel a little better, I'm reluctant to tamper with what seems to be working. I don't feel rebellious, like Naty, but I think that's because I'm old... at university age, one gets told a lot of things to do/not do, so there's more to rebel against ;) I put these restrictions on myself, so only have myself to blame. Or thank.
I'm sure I would feel something more like resentment if I didn't feel some improvement.
It's been very up and down - my worst symptoms stopped quickly, but the lingering fatigue and weakness and brain fog seem to fluctuate.
Hope you're feeling better and better,
Sara