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Hi I'm new to this forum, but not new to lymphocytic colitis. I have not had in flare in over 5 years which I attribute to being on LDN. However, this past Feb I decided to do a liver detox and came off my LDN for 5 weeks and back came the colitis. My first bout of colitis was managed very poorly. I had a GI who was insistent that I had an infection and pumped me full of flagyl. There was never any lab work that came back indicative of an infection, so needless to say it took another year for a diagnosis. I never used any kind of meds after my diagnosis , just an awful lot of accupuncture. I do test positive for a gluten sensitivity, but never went gluten free. I dealt with the headaches, sinus problems, and fatigue for years just so I could eat food I liked. This flare has been different in that I was first put on 40mg prednisone, which helped a tiny bit. Then I found a new GI who switched me to Entocort. for the first 10 days there was an overlap of the two steroids while I tapered off the Prednisone. During that time I had no symptoms, so dummy me, I had pizza and cake. this was I'll timed because that was also the last day I used prednisone. So two days later I was back to D despite still being on 9mg of Entocort. Now I am 8 days into being gluten free again, still no improvement. I've started pepto 5-6 times a day, but still having a lot of discomfort. I restarted my LDN about 3 weeks ago and hope it can produce the same results it did in the past. When I first started LDN I was gastric symptom free so I don't know if I have to get this under control first for the LDN to keep this from recurring again. I have a moderate milk allergy so I am off that again too. Not sure if coming off the prednisone or eating the gluten caused everything to flare up again,but it seems I'm only symptom free if I'm on both steroids. Anybody's advice would be appreciated. I've learned a lot from everyone's posts. Tnanks
T
T
Welcome Christine!
You are lucky you already know your major food intolerances. If you are now being strict and avoiding gluten and dairy, you might consider the other biggie, soy. I am soy intolerant but can have tiny amounts from soy lecithin, GF soy sauce, soy oil, etc. However, if I cheat on gluten or dairy, I pay a heavy price, so I'm never willing to try that. If you've been continuing to eat the foods on your intolerance list, chances are you've been exacerbating your "leaky gut" and risking developing additional food intolerances, so you may need to go back to basics, avoiding eggs too, to see if symptoms improve.
I never used meds other than pepto, so I can't comment, but I wonder if you might be sensitive to the salicylates in Pepto?
You are lucky you already know your major food intolerances. If you are now being strict and avoiding gluten and dairy, you might consider the other biggie, soy. I am soy intolerant but can have tiny amounts from soy lecithin, GF soy sauce, soy oil, etc. However, if I cheat on gluten or dairy, I pay a heavy price, so I'm never willing to try that. If you've been continuing to eat the foods on your intolerance list, chances are you've been exacerbating your "leaky gut" and risking developing additional food intolerances, so you may need to go back to basics, avoiding eggs too, to see if symptoms improve.
I never used meds other than pepto, so I can't comment, but I wonder if you might be sensitive to the salicylates in Pepto?
Hi Christine,
Welcome to the board. I'm not sure where to start here - do you by any chance realize that anytime you eat gluten and casein, you are producing antibodies to them, (and possibly other foods, as Zizzle suggests), and those foods are the source of the inflammation that causes your LC flares? This is true even during the periods of spontaneous remission of symptoms. The corticosteroids can help to suppress the inflammation, but as long as you continue to eat those foods, your antibody levels can continue to climb. After 5 years, (even though you may have been asymptomatic for all that time), your antibody levels have probably reached a rather high level. Like many other things, antibodies have half-life values that determine how long it will take them to decay to a level where you will no longer be reactive, AFTER, you stop producing new antibodies in response to eating foods to which you are sensitive.
IOW, it may take a long time for those antibody levels to decline to below your personal threshold, below which a reaction will not be triggered. Most food antibodies decline rather quickly, once those foods are completely eliminated from the diet, but gluten antibodies are very persistent, and the stool tests at EnteroLab, for example, can reliably detect them for at least a year after gluten has been removed from the diet. In some cases, (where the antibody level is high, to begin with), those tests can still detect antibodies in stool samples up to 2 years after gluten has been excluded from the diet. That's why it takes some of us a long time to respond to the diet.
It's easy to assume that if we are not symptomatic, we are not producing antibodies, (and therefore, not generating new inflammation), but research proves that assumption is false - the antibodies are still there, and the damage to the intestines continues to accrue, whether we have clinical symptoms or not. The more damage we accumulate, the longer it takes to heal, once treatment is resumed. That's why most of us never stop following our treatment program - it's simply not worth it, to have to deal with the inevitable relapse that occur, sooner or later. (For most of us, it is much sooner, of course, so you are unusually fortunate to have been able to enjoy 5 years of spontaneous remission.
My thoughts on LDN are that it may help to maintain remission, in some cases, but so far, no one on this board has been able to use it exclusively, to achieve remission, (or to regain remission, once a relapses occurs). The diet is always the most effective line of treatment, because diet changes are the only way to stop the inflammation from being regenerated. A few members have seen benefits from taking L-glutamine, to help heal the intestines, (in addition to the diet).
For most of us, once we are in a fully-developed flare, it takes at least several months of treatment to reacquire stable remission, without the use of a corticosteroid, because of the need to allow time for the intestines to heal. Of course, we are all different, so YMMV.
Note that research, (and our experience here), shows that each time we discontinue the use of a corticosteroid, and then we begin to use it again, the body builds up an increased degree of tolerance for the drugs, so that each time we relapse, it takes longer, (or a stronger dose), in order for us to regain control of our symptoms. Eventually, we reach a point where the drugs are no longer effective. That's another reason why most of us continue to follow our treatment program at all times, in order to avoid reaching a point where we might need the drugs, but they are no longer effective for us.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I'm not sure where to start here - do you by any chance realize that anytime you eat gluten and casein, you are producing antibodies to them, (and possibly other foods, as Zizzle suggests), and those foods are the source of the inflammation that causes your LC flares? This is true even during the periods of spontaneous remission of symptoms. The corticosteroids can help to suppress the inflammation, but as long as you continue to eat those foods, your antibody levels can continue to climb. After 5 years, (even though you may have been asymptomatic for all that time), your antibody levels have probably reached a rather high level. Like many other things, antibodies have half-life values that determine how long it will take them to decay to a level where you will no longer be reactive, AFTER, you stop producing new antibodies in response to eating foods to which you are sensitive.
IOW, it may take a long time for those antibody levels to decline to below your personal threshold, below which a reaction will not be triggered. Most food antibodies decline rather quickly, once those foods are completely eliminated from the diet, but gluten antibodies are very persistent, and the stool tests at EnteroLab, for example, can reliably detect them for at least a year after gluten has been removed from the diet. In some cases, (where the antibody level is high, to begin with), those tests can still detect antibodies in stool samples up to 2 years after gluten has been excluded from the diet. That's why it takes some of us a long time to respond to the diet.
It's easy to assume that if we are not symptomatic, we are not producing antibodies, (and therefore, not generating new inflammation), but research proves that assumption is false - the antibodies are still there, and the damage to the intestines continues to accrue, whether we have clinical symptoms or not. The more damage we accumulate, the longer it takes to heal, once treatment is resumed. That's why most of us never stop following our treatment program - it's simply not worth it, to have to deal with the inevitable relapse that occur, sooner or later. (For most of us, it is much sooner, of course, so you are unusually fortunate to have been able to enjoy 5 years of spontaneous remission.
My thoughts on LDN are that it may help to maintain remission, in some cases, but so far, no one on this board has been able to use it exclusively, to achieve remission, (or to regain remission, once a relapses occurs). The diet is always the most effective line of treatment, because diet changes are the only way to stop the inflammation from being regenerated. A few members have seen benefits from taking L-glutamine, to help heal the intestines, (in addition to the diet).
For most of us, once we are in a fully-developed flare, it takes at least several months of treatment to reacquire stable remission, without the use of a corticosteroid, because of the need to allow time for the intestines to heal. Of course, we are all different, so YMMV.
Note that research, (and our experience here), shows that each time we discontinue the use of a corticosteroid, and then we begin to use it again, the body builds up an increased degree of tolerance for the drugs, so that each time we relapse, it takes longer, (or a stronger dose), in order for us to regain control of our symptoms. Eventually, we reach a point where the drugs are no longer effective. That's another reason why most of us continue to follow our treatment program at all times, in order to avoid reaching a point where we might need the drugs, but they are no longer effective for us.
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.
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Chris,
L-Glutamine was my first line of defense in lieu of taking steroids when I was first dx w/MC in late '09. Worked wonders for me, still does when I need it and aren't feeling too sorry for myself to take it. Also took ProBoulardi and a high count pro-biotic. If you do a search of my posts you can find out what brands I used in a post that I think was titled "my protocol". I got it from my ND, you can order it online but the cost for me was the same.
Connie
L-Glutamine was my first line of defense in lieu of taking steroids when I was first dx w/MC in late '09. Worked wonders for me, still does when I need it and aren't feeling too sorry for myself to take it. Also took ProBoulardi and a high count pro-biotic. If you do a search of my posts you can find out what brands I used in a post that I think was titled "my protocol". I got it from my ND, you can order it online but the cost for me was the same.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Thanks for everyone's info
I greatly appreciate all of your knowledge. I have learned my lesson and will not be returning to gluten and dairy. I wish I would have found this forum sooner. sometimes it seems like you're the only person in the world with these problems. My next plan is to ask my doctor about L-Glutamine. I have been fortunate enough to have doctors the past couple years that are more holistic than prescription happy. thanks again.
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Tex. do you have a link to that research about producing antibodies that do damage even when we are not experiencing symptoms? I am gathering ammo for my brother and my son. THX!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Here is the link, Chris, in case you couldn't find it: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10784
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Hi Marliss,
My observations were based on my own personal experience, and the personal experience of others on this board, who have been in such situations. For example, I am asymptomatic to casein, but my antibody level is relatively high, at 26. Another member, Deb, is in a similar situation. I have a hunch, if more people did followup tests, we would see much more evidence of this. I have a hunch that everyone here, who had a positive EntoeroLab test result, is still sensitive, despite the fact that they may have developed a tolerance to certain foods. Lack of clinical symptoms never guarantees a lack of sensitivity.
I can, however, cite a reference that studied 61 cases of childhood celiac disease, who supposedly "outgrew" celiac disease, and they had resumed eating a normal diet. The research shows that 79% of them, (48 out of 61), actually had some degree of villus damage, even though their clinical symptoms were "silent". And, of course, even the latent cases were subject to relapse, at any time, so obviously, there's no free pass, with gluten-sensitivity.
http://gut.bmj.com/content/early/2007/0 ... 006.100511
Based on the results of that study, other researchers have pointed out that:
Tex
My observations were based on my own personal experience, and the personal experience of others on this board, who have been in such situations. For example, I am asymptomatic to casein, but my antibody level is relatively high, at 26. Another member, Deb, is in a similar situation. I have a hunch, if more people did followup tests, we would see much more evidence of this. I have a hunch that everyone here, who had a positive EntoeroLab test result, is still sensitive, despite the fact that they may have developed a tolerance to certain foods. Lack of clinical symptoms never guarantees a lack of sensitivity.
I can, however, cite a reference that studied 61 cases of childhood celiac disease, who supposedly "outgrew" celiac disease, and they had resumed eating a normal diet. The research shows that 79% of them, (48 out of 61), actually had some degree of villus damage, even though their clinical symptoms were "silent". And, of course, even the latent cases were subject to relapse, at any time, so obviously, there's no free pass, with gluten-sensitivity.
http://gut.bmj.com/content/early/2007/0 ... 006.100511
Based on the results of that study, other researchers have pointed out that:
and:In the follow-up examination, 48 out of these 61 patients had, as expected, developed small bowel mucosal villous atrophy with crypt hyperplasia; 70% of them were also suffering from osteopenia or osteoporosis, which may well have been due to untreated coeliac disease.
Note this observation that validates the possibility that celiacs can develop tolerance to gluten:The current study again shows nicely that the “2 years rule” in gluten challenge is no longer valid. It further supports the view that coeliac disease clearly exists beyond villous atrophy. The current diagnostic criteria (the European Society for Pediatric Gastroenterology and Nutrition diagnostic criteria2) based on mucosal damage, and forgetting early developing coeliac disease and dermatitis herpetiformis, are no longer valid. Small intestinal villous atrophy is only one manifestation of genetic gluten intolerance
http://ukpmc.ac.uk/articles/PMC2000254/ ... lPKnEgNr.6Surprisingly, two out of the 13 patients evinced mucosal atrophy shortly after the beginning of the gluten challenge, but their mucosa eventually normalised when the gluten ingestion continued. The authors concluded that there might be some patients with coeliac disease who may develop true latency and tolerance against dietary gluten.
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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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Yes, very interesting, Tex. So, I wonder how celiac disease ever actually got allowed to become something western medicine EVER allowed to be considered an "actual illness" in the first place? I can't imagine how the drug companies ever let this go unchallenged. This goes back a LONG time, I remember being friends with another "new mom" in the 70's who already knew her son was celiac. How did it ever get past the drug companies in their effort to suppress an actual cure for celiac related illnesses?
Obviously those of us who are non-celiac are in a huge majority here,....... I just find the (lack of) progression of knowledge among the vast majority of western med doctors to be appalling. I just talked to my daughter (also GS) who is in her first year of Nursing School a few minutes ago. This subject is 101 for the class she is taking right now, they are teaching nutrition and food sensitivities as a cause of illness to the Nursing students now, so why are so many of our MD's and GI's still so ignorant?
Seriously, what happened to the curiosity that made them become doctors in the first place? It's not an easy path to become a doctor, it couldn't be a just a desire to make $. So, why don't so many of them stay informed? Are they just "too busy"? I adapt, we here all adapt and learn, why can't they?
Forgive my negativity, I'm hopeful to see what my daughter is being taught and just still really shocked that we all still need to be our own doctors.
Obviously those of us who are non-celiac are in a huge majority here,....... I just find the (lack of) progression of knowledge among the vast majority of western med doctors to be appalling. I just talked to my daughter (also GS) who is in her first year of Nursing School a few minutes ago. This subject is 101 for the class she is taking right now, they are teaching nutrition and food sensitivities as a cause of illness to the Nursing students now, so why are so many of our MD's and GI's still so ignorant?
Seriously, what happened to the curiosity that made them become doctors in the first place? It's not an easy path to become a doctor, it couldn't be a just a desire to make $. So, why don't so many of them stay informed? Are they just "too busy"? I adapt, we here all adapt and learn, why can't they?
Forgive my negativity, I'm hopeful to see what my daughter is being taught and just still really shocked that we all still need to be our own doctors.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Because they're forced by laws, convention, and threat of litigation, to march to the beat of a different drum, than the one we march to. We're driven by an incentive to get our life back - their main incentive is to just stay out of court.Stanz wrote:I adapt, we here all adapt and learn, why can't they?
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.