I am a firm beleiver in the gluten-free diet as the heart of treatment for MC, and staying away from other food intolerances as well. I understand why people here recommend it as the best solution for MC, unless people prefer to take meds and not alter their diet.
But how do we know that there aren't other variables effecting our gastrointestinal tract like bacteria or parasites? For example, following the gluten free diet alone would not have solved my h. pylori problem...unless I am misunderstanding something.
I find it intresting that some people (not all) who have followed the diet for a number of years still react to intolerances like rice or other non-gluten grains or legumes whereas others like Tex are able to eat some of them, like dairy, again.
It could be that for some a genetic trigger has been turned on and won't turn off. But could it also be possible that there is a parasite or bacteria in play? Following a Paleo Diet, for example, should create an alkaline environment which is less favorable to such bugs. It might reduce them, but not entirely eradicate them. So when we try to eat certain intolerances they might thrive again.
This is conjecture on my part, but perhaps a worthwhile question to explore.
Celia
How Do We Know for Sure?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How Do We Know for Sure?
I beleive in magic!
Hi Celia!
Well, we don't!! When I was first diagnosed my GI explained that IBDs (Inflammatory Bowel Diseases) are widely thought to be caused by autoimmune inflammation. BUT it is still entirely possible there is an unidentified bacteria (c-diff was only fairly recently identified~20 years ago??) or parasitic agent at work. Baiscally medicine understands about as much about the digestive system as they do the brain
They seem to be relying on symptomatic treatment, as no one seems interested in finding the root cause and investigating ways to prevent/reverse it - yet there are new meds coming to market each year to relieve symptoms!
Anything is possible!
JMO,
Mary
Well, we don't!! When I was first diagnosed my GI explained that IBDs (Inflammatory Bowel Diseases) are widely thought to be caused by autoimmune inflammation. BUT it is still entirely possible there is an unidentified bacteria (c-diff was only fairly recently identified~20 years ago??) or parasitic agent at work. Baiscally medicine understands about as much about the digestive system as they do the brain
They seem to be relying on symptomatic treatment, as no one seems interested in finding the root cause and investigating ways to prevent/reverse it - yet there are new meds coming to market each year to relieve symptoms!
Anything is possible!
JMO,
Mary
I agree with Mary. MC is such a rare disease that virtually nothing is chiseled in stone. We have to learn as we go. That has always been the basic premise of the group at this support board. Sally Read set up the orignial discussion board 6 or 7 years ago, (I'm guessing here, so anyone feel free to correct me), then graduated to another one, and this is the second reincarnation of that support board. Ever since day one, the idea behind the board has been to learn together, how best to control this disease, and how to keep it from controling our lives, and that will always be the purpose of this board. The board does not exist just to educate, and provide and receive support--it's also here so that we can learn together, and from each other.
There is no doubt in my mind, that I can learn more about this disease here, than I can in my GI's office--in fact, there's no comparison. Yet we still need the medical profession, because they have the tests that we need to rule out all those other possible issues, that you mentioned. That's are what doctor's and their clinics are for, so why not use their services?
It's true that many of us have other problems that sometimes confound the main issue, and some of those problems do need to be dealt with. On the other hand, though, I see no reason to just assume that we all are victims of every conceiveable digestive system disease ever dreamed of. Trying to test for every possible problem is not only expensive, but some of those tests can be risky, and in some cases, it can cause adverse effects on our bodies, and, it usually turns out to be a big waste of time and energy. So many diseases have similar symptoms that it's easy to get caught up in the game and feel that we need to test for one possibility after another.
The bottom line is, it's pointless to argue with success. Usually, those other issues will disappear when the primary symptoms are brought under control. If other symptoms persist, then sure, they should be pursued also, but it's pointless to worry about all the secondary issues before you have the primary issue resolved, because gluten sensitivity has a propensity to dominate the primary organs of our bodies, and the signals that we receive from them.
At one time, at the height of my misery, I had sufficient symptoms to be diagnosed with rheumatoid arthritis, systemic lupus erythematosus, chronic fatigue syndrome, IBS, and a host of other diseases. I didn't bother trying to get those diagnoses though, because cutting out gluten, and all the other foods that were irritating my gut, resolved my symptoms.
The reason why there is so much variation in effects, among patients with MC, is because it is not a simple, well-behaved disease. MC has now been identified in at least five different forms, (the last time I checked), IOW, there are five unique types of markers. It does not have a single, unique cause, the way many diseases do, (like celiac disease, for example). True, once the disease is triggered, then gluten sensitivity becomes an issue, and avoiding gluten may well be all that is necessary to resolve all symptoms, but the initial triggering of the disease can occur in many ways.
Yes, intestinal bacteria can trigger MC, but they are only one of many causes. It's a complex disease. Trying to pin it on bacteria, and resolve it by either killing those bacteria, or replacing them with other bacteria, is difficult to support, in light of the fact that many of us have resolved our symptoms by diet alone, and without the aid of a probiotic. The only logical conclusion that could be reached there, if bacteria is the cause, is that the bacteria cannot survive without gluten. Who knows? Maybe that's the case, but I would be rather surprised it it were.
I believe that the cause of MC, as I have mentioned before, is a virus, not a bacteria--the bacteria are simply opportunists. If you will reread those earlier posts, you will see the logic of why that is not only possible, but highly likely. If you find this claim confusing and would like some additonal explanation of the reasoning behind it, please don't hesitate to ask. One of these days, (I hope during our lifetimes), research will verify it.
Excellent topic, by the way. Thanks for posting it.
Tex
There is no doubt in my mind, that I can learn more about this disease here, than I can in my GI's office--in fact, there's no comparison. Yet we still need the medical profession, because they have the tests that we need to rule out all those other possible issues, that you mentioned. That's are what doctor's and their clinics are for, so why not use their services?
It's true that many of us have other problems that sometimes confound the main issue, and some of those problems do need to be dealt with. On the other hand, though, I see no reason to just assume that we all are victims of every conceiveable digestive system disease ever dreamed of. Trying to test for every possible problem is not only expensive, but some of those tests can be risky, and in some cases, it can cause adverse effects on our bodies, and, it usually turns out to be a big waste of time and energy. So many diseases have similar symptoms that it's easy to get caught up in the game and feel that we need to test for one possibility after another.
The bottom line is, it's pointless to argue with success. Usually, those other issues will disappear when the primary symptoms are brought under control. If other symptoms persist, then sure, they should be pursued also, but it's pointless to worry about all the secondary issues before you have the primary issue resolved, because gluten sensitivity has a propensity to dominate the primary organs of our bodies, and the signals that we receive from them.
At one time, at the height of my misery, I had sufficient symptoms to be diagnosed with rheumatoid arthritis, systemic lupus erythematosus, chronic fatigue syndrome, IBS, and a host of other diseases. I didn't bother trying to get those diagnoses though, because cutting out gluten, and all the other foods that were irritating my gut, resolved my symptoms.
The reason why there is so much variation in effects, among patients with MC, is because it is not a simple, well-behaved disease. MC has now been identified in at least five different forms, (the last time I checked), IOW, there are five unique types of markers. It does not have a single, unique cause, the way many diseases do, (like celiac disease, for example). True, once the disease is triggered, then gluten sensitivity becomes an issue, and avoiding gluten may well be all that is necessary to resolve all symptoms, but the initial triggering of the disease can occur in many ways.
Yes, intestinal bacteria can trigger MC, but they are only one of many causes. It's a complex disease. Trying to pin it on bacteria, and resolve it by either killing those bacteria, or replacing them with other bacteria, is difficult to support, in light of the fact that many of us have resolved our symptoms by diet alone, and without the aid of a probiotic. The only logical conclusion that could be reached there, if bacteria is the cause, is that the bacteria cannot survive without gluten. Who knows? Maybe that's the case, but I would be rather surprised it it were.
I believe that the cause of MC, as I have mentioned before, is a virus, not a bacteria--the bacteria are simply opportunists. If you will reread those earlier posts, you will see the logic of why that is not only possible, but highly likely. If you find this claim confusing and would like some additonal explanation of the reasoning behind it, please don't hesitate to ask. One of these days, (I hope during our lifetimes), research will verify it.
Excellent topic, by the way. Thanks for posting it.
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.
Yup, Dr. Fine also thinks there's some sort of pathogen underlying all this.
Also, I think it's safe to state that it's been determined that the gene pair one has determines the exact allergens that we have, so it's not a sign that something's not working right when we find additional ones.
For example, we have another member here who has the EXACT same gene pair that I have, and as it turns out, we have the exact same allergens.
My sister has a variant of the HDL DQ 1 gene from the one I have, but that still makes for the same allergens when combined with our other gene, the HDL DQ2, so she too has the same allergens. I've also heard that this is true across the board.
In other words, whatever it is that sets the wheels in motion, does not determine which allergens we have.
Let's not forget that those of us with celiac and other gs diseases have more permeable guts than the general population, which puts the right proteins in the right place at the right time to generate these allergic reactions.
What I'd really like to know is WHY we have so much more zonulin than other people? This must include those with the same HLA genes, so why don't they produce as much zonulin as their counterparts with the same HLA genes?
Not sure if that list is posted somewhere on this site or not, but remember, there was a LONG list of things that make the gut more permeable. Perhaps if we can't find that actual list, we can try to remember what all was on that list, if you happened to see it.
The 2 things I remember in particular -- no big surprises -- were that 1) gluten itself can increase the permeability, and 2) that stress can actually increase it as well.
OK, let's see how good your memories are.
Anyone remember any more of them? There were quite a few.
Uh oh, 'nother interuption. Luce
Also, I think it's safe to state that it's been determined that the gene pair one has determines the exact allergens that we have, so it's not a sign that something's not working right when we find additional ones.
For example, we have another member here who has the EXACT same gene pair that I have, and as it turns out, we have the exact same allergens.
My sister has a variant of the HDL DQ 1 gene from the one I have, but that still makes for the same allergens when combined with our other gene, the HDL DQ2, so she too has the same allergens. I've also heard that this is true across the board.
In other words, whatever it is that sets the wheels in motion, does not determine which allergens we have.
Let's not forget that those of us with celiac and other gs diseases have more permeable guts than the general population, which puts the right proteins in the right place at the right time to generate these allergic reactions.
What I'd really like to know is WHY we have so much more zonulin than other people? This must include those with the same HLA genes, so why don't they produce as much zonulin as their counterparts with the same HLA genes?
Not sure if that list is posted somewhere on this site or not, but remember, there was a LONG list of things that make the gut more permeable. Perhaps if we can't find that actual list, we can try to remember what all was on that list, if you happened to see it.
The 2 things I remember in particular -- no big surprises -- were that 1) gluten itself can increase the permeability, and 2) that stress can actually increase it as well.
OK, let's see how good your memories are.
Anyone remember any more of them? There were quite a few.
Uh oh, 'nother interuption. Luce
Thanks, Polly, the lectins cover alot of ground, all by themselves, don't they?
I think there were LOTS more in that list. Am I wrong?
Wow, I was going to post something else in a new thread, but Mom's worn me down bigtime. Matter of fact, I've not even had a balanced meal since yesterday afternoon. I have many things prepared for her to eat with all her many feedings, but I can't eat any of them. I may make myself sick due to NOT eating anything but junk!
Wish I could find that list!
Yours, Luce
I think there were LOTS more in that list. Am I wrong?
Wow, I was going to post something else in a new thread, but Mom's worn me down bigtime. Matter of fact, I've not even had a balanced meal since yesterday afternoon. I have many things prepared for her to eat with all her many feedings, but I can't eat any of them. I may make myself sick due to NOT eating anything but junk!
Wish I could find that list!
Yours, Luce
Hello ya'll
I usually don't post. I read the posts almost every day. If I avoid gluten, wheat, barley etc, I don't have any symptons of LC. I don't seem to have any other intolerances. At least part of this topic pertains to my current situation.
I went to the doctor (minor emergency) this evening because I was feeling terrible. I had moderately severe abdominal pain all day. It hurt to walk, stand up, sit down, you name it. I could not get into see a doctor until this evening. I didn't go to the emergency room because I did not think the pain was that bad. I had a fever of almost 100. Anyway, the physician on duty told me the location of my abdominal pain was classic symptoms of diverticulitis. He gave me perscriptions for antibiotics - metronidazol & ciprofloxacn. I told him about my MC, he suggested I contact my GI if I didn't get better in a couple of days.
I plan to call the GI in the morning because I plan to leave early Friday morning to drive three teenagers to a youth bowling tournament near Houston.
I seem to remember someone this board had been diagnosed with diverticulitis. Is it you, Wayne?
Thought I would share. I'll let you know what the GI says.
TXBrenda
I usually don't post. I read the posts almost every day. If I avoid gluten, wheat, barley etc, I don't have any symptons of LC. I don't seem to have any other intolerances. At least part of this topic pertains to my current situation.
I went to the doctor (minor emergency) this evening because I was feeling terrible. I had moderately severe abdominal pain all day. It hurt to walk, stand up, sit down, you name it. I could not get into see a doctor until this evening. I didn't go to the emergency room because I did not think the pain was that bad. I had a fever of almost 100. Anyway, the physician on duty told me the location of my abdominal pain was classic symptoms of diverticulitis. He gave me perscriptions for antibiotics - metronidazol & ciprofloxacn. I told him about my MC, he suggested I contact my GI if I didn't get better in a couple of days.
I plan to call the GI in the morning because I plan to leave early Friday morning to drive three teenagers to a youth bowling tournament near Houston.
I seem to remember someone this board had been diagnosed with diverticulitis. Is it you, Wayne?
Thought I would share. I'll let you know what the GI says.
TXBrenda
Brenda,
Where exactly will you be around Houston, and for how long? I certainly hope your antibiotics are working well by then and that you feel good because it will be some kinda hot here this week. This will be the hottest week we've had so far.
Wish you would happen to somewhere where I could run by to just say "hi."
Yours, Luce
Where exactly will you be around Houston, and for how long? I certainly hope your antibiotics are working well by then and that you feel good because it will be some kinda hot here this week. This will be the hottest week we've had so far.
Wish you would happen to somewhere where I could run by to just say "hi."
Yours, Luce
Hi, Luce
I'll be in the Conroe/Huntsville area. I think we will be at Huntsville Lanes on Saturday & 300 Bowl in Conroe on Sunday. I'm not sure of the times. Our other coach has all the information and we will meet up with her Friday night at the Hotel. We are staying at the Baymont in Conroe Friday and Saturday night. Unfortunately I have to get back to Amarillo by Monday.
Thanks for replying to my post.
Brenda
I'll be in the Conroe/Huntsville area. I think we will be at Huntsville Lanes on Saturday & 300 Bowl in Conroe on Sunday. I'm not sure of the times. Our other coach has all the information and we will meet up with her Friday night at the Hotel. We are staying at the Baymont in Conroe Friday and Saturday night. Unfortunately I have to get back to Amarillo by Monday.
Thanks for replying to my post.
Brenda
Hi Brenda,
Yep, it was me. At least that's what the pathologist called it, after he examined the biopsies taken from the section of colon that they removed during the surgery.
The problem is that I didn't have any pain, nor fever. My gut wasn't even tender, let alone painful, in the lower left quadrant, where the pain should have been centered, (they removed part of my sigmoid colon).
As you can attest, I should have had severe pain, if I had acute diverticulitis.
There's no question that I have diverticulosis, but I think the problem that I had, that caused the need for emergency surgery, was diverticular colitis, not acute diverticulitis, as per the diagnosis, but that's just a guess, since I'm not a doctor.
Good luck with the treatment. Those two antibiotics should bring relief, without causing an MC reaction, with any luck at all.
Wayne
Yep, it was me. At least that's what the pathologist called it, after he examined the biopsies taken from the section of colon that they removed during the surgery.
The problem is that I didn't have any pain, nor fever. My gut wasn't even tender, let alone painful, in the lower left quadrant, where the pain should have been centered, (they removed part of my sigmoid colon).
As you can attest, I should have had severe pain, if I had acute diverticulitis.
There's no question that I have diverticulosis, but I think the problem that I had, that caused the need for emergency surgery, was diverticular colitis, not acute diverticulitis, as per the diagnosis, but that's just a guess, since I'm not a doctor.
Good luck with the treatment. Those two antibiotics should bring relief, without causing an MC reaction, with any luck at all.
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.
Luce,
I don't know if this is the one that you're looking for, but here's a list of the causes of LGS, (and also a list of the issues that are associated with it):
http://altmedicine.about.com/od/healthc ... akyGut.htm
Tex
I don't know if this is the one that you're looking for, but here's a list of the causes of LGS, (and also a list of the issues that are associated with it):
http://altmedicine.about.com/od/healthc ... akyGut.htm
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.
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Thanks, Wayne
I feel some relief this morning, but I'm still going to call my GI today. Thanks for the information on the medication prescribed. I usually don't have a problem with antibiotics causing D, but there is always a first time. This is a good thing since I have to be premedicated for so many procedure after having my knees replaced.
Brenda
I feel some relief this morning, but I'm still going to call my GI today. Thanks for the information on the medication prescribed. I usually don't have a problem with antibiotics causing D, but there is always a first time. This is a good thing since I have to be premedicated for so many procedure after having my knees replaced.
Brenda
If it is the genes that determine our intolerances, then why/how do some people overcome their intolerances? Is it possible that some are genetically determined (gluten, for example), and some are not?
I am not trying to argue that a particular pathogen is the single cause of MC. I belive that the causes of any chronic or degenerative illness are multi-factoral. What I am trying to say is how do we know that a pathogen isn't continuing to cause problems for us?
I've observed that people in the forum are able to turn off their MC symptoms with the gluten free diet, but that doesn't seem to be the end of the story for a number of people. Karen, for example, recently reported having D. again after eating rice for a few days. It seems that quite a few people can't eat their intolerances without initiating symptoms even though they have been on an intolerance-free diet for quite some time. Tex, you seem to be the one person I recall who is able to eat former intolerances again. Many of us now have multiple auto-immune conditions as well.
It definitely is a success to be able to turn off one's MC symptoms. I am not arguing that. I'm just wondering if there could be a pathogen that is still hanging around and causing problems for some of us, making it difficult to overcome some of our intolerances. It may not be the original trigger, it may have been acquired because our systems are weak. In my case, h. pylori is definitely a factor, and possibly a parasite.
I do recall your theory about a virus being the cause of MC. We will see! I completely beleive in the gltuen free diet as the way to alleviate symptoms. I myself beleive that there are supplements that can complement the diet.
All the best, Celia
I am not trying to argue that a particular pathogen is the single cause of MC. I belive that the causes of any chronic or degenerative illness are multi-factoral. What I am trying to say is how do we know that a pathogen isn't continuing to cause problems for us?
I've observed that people in the forum are able to turn off their MC symptoms with the gluten free diet, but that doesn't seem to be the end of the story for a number of people. Karen, for example, recently reported having D. again after eating rice for a few days. It seems that quite a few people can't eat their intolerances without initiating symptoms even though they have been on an intolerance-free diet for quite some time. Tex, you seem to be the one person I recall who is able to eat former intolerances again. Many of us now have multiple auto-immune conditions as well.
It definitely is a success to be able to turn off one's MC symptoms. I am not arguing that. I'm just wondering if there could be a pathogen that is still hanging around and causing problems for some of us, making it difficult to overcome some of our intolerances. It may not be the original trigger, it may have been acquired because our systems are weak. In my case, h. pylori is definitely a factor, and possibly a parasite.
I do recall your theory about a virus being the cause of MC. We will see! I completely beleive in the gltuen free diet as the way to alleviate symptoms. I myself beleive that there are supplements that can complement the diet.
All the best, Celia
I beleive in magic!