Visit the Microscopic Colitis Foundation Website
Hi All,
I found your site a few weeks ago after I first got diagnosed with CC.
My symtoms came on fast and furious around mid September. After about a week and a half I went to my PC and he said to knock out the dairy, had me submit a stool sample, and said to try some Pepto Bismol. After another visit a couple of weeks later and a round of fun with Flagyl, ( I was like a fire hydrant with that stuff), he sent me to a gastro.
Just before Thanksgiving, I had completed all the upper GI, Colonoscopy and biopsies. He made the determination that it is CC and started me on Asacol and Lomotil. (Could have been that I ate crazy on Thanksgiving, but the Lomotyl seems to have made things worse).
Symptoms seem to fluctuate from not too bad, (almost normans) to frequent D, or at least the urgent feeling along with cramps and severe gas.
I haven't seriously started watching my diet yet other than mostly stopping dairy(I had some lasagna on Xmas eve, and so far so good), but I intend to do that after the holidays. And I just want to hear what my gastro has to say about the food tests, before I try Enterolab. (Next visit is on Jan 8th)
Now back to the beginning. When I first went to my PC and he said to cut out the dairy, I was trying to think of anything I was doing differently that could be giving me the D. I remembered that about a week before it started I had been to the dentist for a cleaning and was advised to try a mouth rinse called "Closys" for bad breath. Long story short, this stuff's active ingredient is chlorine dioxide, which is claimed to kill the anaerobic bacteria living on the back of your tongue. So I thought maybe it could be causing an imbalance in my gut, since I seem to read about all kinds of bacteria being in there as well.
I stopped using the Closys, but when I mentioned it to both my PC and gastro, they both dismissed it.
So I thought I would ask the experts here. Does this make any sense, or even seem possible? Or are the doc's right?
My thought would be to try it again, whenever I get back to normal, but I haven't been there long enough yet for a test to seem worthwhile.
Honestly, I think I'm just looking real hard for any other reason than food intolerances. I just love to eat. I've always been like Mikey on the old cereal commercial, (Give it to Mikey, he'll eat anything).
I'm glad to have found you guys, but not glad you're here... you know what I mean. From what I've read, many of you have dealt with much more than I have had to up to now, and for much longer.
Steve
Chlorine Dioxide
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Steve. We are glad you found us.See this thread: http://www.perskyfarms.com/phpBB2/viewt ... ht=lomotil
You may want to change to Imodium AD.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Steve,
You said you wanted to talk to your GI about food tests before you went to Entrolabs. My GI, who did order the Entrolab tests for me, said there was no test that would help me with food issues. I did keep a diary and it helped me determine my reaction to oats and spinach. I would suggest you might start with keeping one before your next visit. In it I also kept track of all my BMs and consistency. It helped also to prove that the Asacol they had me on was making me worse.
Good luck with this journey.
Jan
You said you wanted to talk to your GI about food tests before you went to Entrolabs. My GI, who did order the Entrolab tests for me, said there was no test that would help me with food issues. I did keep a diary and it helped me determine my reaction to oats and spinach. I would suggest you might start with keeping one before your next visit. In it I also kept track of all my BMs and consistency. It helped also to prove that the Asacol they had me on was making me worse.
Good luck with this journey.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Hi Steve,
Welcome to our internet family. As Jan mentioned, though some doctors will order the Enterolab tests for you, (some insurance companies will pay for those tests, if a doctor orders them), most GI docs consider stool tests to be totally worthless for food intolerance testing, because historically, they have been, and still are, for that matter, except for the tests offered by one single lab, located in Dallas, Texas, namely, Enterolab. Because of the track record of all the other tests, most doctors still don't trust the tests offered by Enterolab, either, but I can assure you that they are extremely accurate, and reliable, and even if you end up paying for the tests out of your own pocket, (as most of us have done), it is money well spent.
Actually, both Asacol and Lomotil contain lactose, and any GI doctor worth his or her salt will tell you that there is not enough lactose in them to make any difference. Unfortunately, however, it is not the lactose that is the problem - it's the casein that's in the lactose, (in trace amounts), as an impurity. Most of us are very, very sensitive to casein, (the primary protein in milk). Lactose is a sugar, and while the medical profession refers to the inability to properly digest lactose, as "lactose intolerance", it's really only a minor issue, due to insufficient production of lactase, (the enzyme responsible for splitting lactose). On the other hand, the proteins to which we are intolerant, tend to cause autoimmune reactions, when we have MC, and they therefore trigger the inflammation which is a marker of MC. The problem is, when the genes that predispose to MC are triggered, the genes that cause food sensitivities are also triggered, in the vast majority of us. In order of highest probability, those proteins are gluten, (the primary protein in wheat), hordein, (the primary protein in barley), secalin, (the primary protein in rye), casein, (the primary protein in all dairy products), soya, (the primary protein in soy), avenin, (the primary protein in oats), egg albumen, etc. You can see that many of us have our food sensitivities listed under our avatars.
Anyway, if I had to guess, I would guess that your GI doc will ridicule the Enterolab tests, unless he happens to be one of the few GI docs who stay abreast of current technology in his field, (most don't seem to bother to learn new things, once they get their certification as a bona fide "expert").
As far as the possibility of chlorine dioxide causing an intestinal bacteria imbalance, that's probably a stretch, but not completely out of the question. It is a fact that the tonsils are an important part of the immune system, and there is a theory that they may act as a reservoir for gut bacteria, (that's also claimed for the appendix, incidentally). Actually, it's not very easy for most bacteria to reach the intestines, in the first place, because the acid in the stomach has such a low pH, that it can easily kill most bacteria, with a few exceptions, the most noteworthy of which is E. coli, for example.
At the risk of sounding like a fool, I would have to say that the main thing that theory has going for it, is the fact that the docs dismissed it. We have found that most doctors misunderstand MC to such an extent, that one can often do just the opposite of what they recommend, and be much better off.
Sad but true, in many cases. FWIW, though, IMO, they are probably right, in this case.
Scope mouthwash contains cetylpyridinium chloride as the active ingredient, and after years of use, Scope became the first commercial product to which I developed an honest-to-goodness allergy. One day, I noticed that my mouth felt as though it had been burned, after I used it. The next day, a few seconds after I poured some in my mouth, it burned so badly that I immediately spit it out, and looked in the mirror, and saw that my mouth was almost beet red, and burning like fire, from the inflammation. I never used it again. I was in my late 20s - early 30s, at the time. Maybe it somehow contributed to my developing MC, in my late 50s. Who knows?
It definitely triggered a severe inflammatory response from my immune system.
Trust me, most of us have to be virtually dragged, kicking and screaming, to the GF diet, because no one wants to give up the things we are accustomed to eating. We have to do what we have to do, though, and each of us has to decide how we want to handle this disease, for the rest of our life. Basically, there are four options:
1. Medications, (either Entocort EC, or one of the 5-ASA meds)
2. Diet
3. A combination of medication and diet
4. Learn to live with the symptoms.
Actually, the diet is not a condemnation to a life of deprivation. If you know how to cook, check out the gourmet recipes in Dee's Kitchen. They are all gluten-free, casein-free, and soy-free, and Dee has perfected and listed several hundred recipes there. Believe it or not, most of them taste just as good, and many of them taste better, than conventional dishes. http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Again, welcome aboard, and please feel free to ask anything. Rest assured that we will support you, and try to help in any way we can, regardless of the treatment plan that you decide to follow.
Tex (Wayne)
Welcome to our internet family. As Jan mentioned, though some doctors will order the Enterolab tests for you, (some insurance companies will pay for those tests, if a doctor orders them), most GI docs consider stool tests to be totally worthless for food intolerance testing, because historically, they have been, and still are, for that matter, except for the tests offered by one single lab, located in Dallas, Texas, namely, Enterolab. Because of the track record of all the other tests, most doctors still don't trust the tests offered by Enterolab, either, but I can assure you that they are extremely accurate, and reliable, and even if you end up paying for the tests out of your own pocket, (as most of us have done), it is money well spent.
Actually, both Asacol and Lomotil contain lactose, and any GI doctor worth his or her salt will tell you that there is not enough lactose in them to make any difference. Unfortunately, however, it is not the lactose that is the problem - it's the casein that's in the lactose, (in trace amounts), as an impurity. Most of us are very, very sensitive to casein, (the primary protein in milk). Lactose is a sugar, and while the medical profession refers to the inability to properly digest lactose, as "lactose intolerance", it's really only a minor issue, due to insufficient production of lactase, (the enzyme responsible for splitting lactose). On the other hand, the proteins to which we are intolerant, tend to cause autoimmune reactions, when we have MC, and they therefore trigger the inflammation which is a marker of MC. The problem is, when the genes that predispose to MC are triggered, the genes that cause food sensitivities are also triggered, in the vast majority of us. In order of highest probability, those proteins are gluten, (the primary protein in wheat), hordein, (the primary protein in barley), secalin, (the primary protein in rye), casein, (the primary protein in all dairy products), soya, (the primary protein in soy), avenin, (the primary protein in oats), egg albumen, etc. You can see that many of us have our food sensitivities listed under our avatars.
Anyway, if I had to guess, I would guess that your GI doc will ridicule the Enterolab tests, unless he happens to be one of the few GI docs who stay abreast of current technology in his field, (most don't seem to bother to learn new things, once they get their certification as a bona fide "expert").
As far as the possibility of chlorine dioxide causing an intestinal bacteria imbalance, that's probably a stretch, but not completely out of the question. It is a fact that the tonsils are an important part of the immune system, and there is a theory that they may act as a reservoir for gut bacteria, (that's also claimed for the appendix, incidentally). Actually, it's not very easy for most bacteria to reach the intestines, in the first place, because the acid in the stomach has such a low pH, that it can easily kill most bacteria, with a few exceptions, the most noteworthy of which is E. coli, for example.
At the risk of sounding like a fool, I would have to say that the main thing that theory has going for it, is the fact that the docs dismissed it. We have found that most doctors misunderstand MC to such an extent, that one can often do just the opposite of what they recommend, and be much better off.
Sad but true, in many cases. FWIW, though, IMO, they are probably right, in this case.Scope mouthwash contains cetylpyridinium chloride as the active ingredient, and after years of use, Scope became the first commercial product to which I developed an honest-to-goodness allergy. One day, I noticed that my mouth felt as though it had been burned, after I used it. The next day, a few seconds after I poured some in my mouth, it burned so badly that I immediately spit it out, and looked in the mirror, and saw that my mouth was almost beet red, and burning like fire, from the inflammation. I never used it again. I was in my late 20s - early 30s, at the time. Maybe it somehow contributed to my developing MC, in my late 50s. Who knows?
It definitely triggered a severe inflammatory response from my immune system.Trust me, most of us have to be virtually dragged, kicking and screaming, to the GF diet, because no one wants to give up the things we are accustomed to eating. We have to do what we have to do, though, and each of us has to decide how we want to handle this disease, for the rest of our life. Basically, there are four options:
1. Medications, (either Entocort EC, or one of the 5-ASA meds)
2. Diet
3. A combination of medication and diet
4. Learn to live with the symptoms.
Actually, the diet is not a condemnation to a life of deprivation. If you know how to cook, check out the gourmet recipes in Dee's Kitchen. They are all gluten-free, casein-free, and soy-free, and Dee has perfected and listed several hundred recipes there. Believe it or not, most of them taste just as good, and many of them taste better, than conventional dishes. http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Again, welcome aboard, and please feel free to ask anything. Rest assured that we will support you, and try to help in any way we can, regardless of the treatment plan that you decide to follow.
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.
When I found Tex, Dr. Polly and the PP, I decided to just try the diet alone (no meds) like Tex and Polly. I got my diagnosis on a Friday and by Monday I was GF.
I decided if that's what I had to do to stop the D, I would be GF the rest of my life. It worked very well at first but then good old soy started giving me problems. I had suspected that from the experiences of other PP and EnteroLab confirmed it. I hate that intolerance more than gluten and dairy........
I decided if that's what I had to do to stop the D, I would be GF the rest of my life. It worked very well at first but then good old soy started giving me problems. I had suspected that from the experiences of other PP and EnteroLab confirmed it. I hate that intolerance more than gluten and dairy........
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Greetings Steve~~~~~
sorry to read of your issues--but as U wander about-reading stories-I am sure U will see that *U* have to be your own doctor too~~
SHort story---first GI was ignorant--and he started me on Flagyl and VanCo---worked partially--got worse but stayed cus I didnt know what to do-- he was HIGHLY spoken of??? for what--I couldnt tell U~~~he was not knowledgeable of this disease!!!
Pepto is a no-no for me= Asacol==was useless--and Entocort caused me bad problems--
Got to a GI in New York City---due to the stupidity of GI 1---
He was my savior---had to go on Prednizone AND Colazaol---
I had a LACTOSE problem----
Went to a nutrictionist who mapped out an eating plan===CUS I was always a JUNK eater--
Took time but gradually I got better==as I have said here a zillion times---I never suffered with so many issues as many here do--
A few INGREDIANTS bothered me---which started me to check what was in a store bought product!!
U might have to stop being MIKEY and get down to brass tacks and start to elimate stuff that might be your irritating issues!!
Sadly sometimes it is TRIAL and ERROR but better this than NOT LIVING a GOOD LIFE~~
And at times U might wanna throw in the towel and say to hell with it BUT dont---getting back on that *wellness road* is well worth every effort that *U* have to go thru~~~
Best wishes --
Barbara
sorry to read of your issues--but as U wander about-reading stories-I am sure U will see that *U* have to be your own doctor too~~
SHort story---first GI was ignorant--and he started me on Flagyl and VanCo---worked partially--got worse but stayed cus I didnt know what to do-- he was HIGHLY spoken of??? for what--I couldnt tell U~~~he was not knowledgeable of this disease!!!
Pepto is a no-no for me= Asacol==was useless--and Entocort caused me bad problems--
Got to a GI in New York City---due to the stupidity of GI 1---
He was my savior---had to go on Prednizone AND Colazaol---
I had a LACTOSE problem----
Went to a nutrictionist who mapped out an eating plan===CUS I was always a JUNK eater--
Took time but gradually I got better==as I have said here a zillion times---I never suffered with so many issues as many here do--
A few INGREDIANTS bothered me---which started me to check what was in a store bought product!!
U might have to stop being MIKEY and get down to brass tacks and start to elimate stuff that might be your irritating issues!!
Sadly sometimes it is TRIAL and ERROR but better this than NOT LIVING a GOOD LIFE~~
And at times U might wanna throw in the towel and say to hell with it BUT dont---getting back on that *wellness road* is well worth every effort that *U* have to go thru~~~
Best wishes --
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Steve
I second Ants comment
This is the best place to help you on your journey to remission. With best wishes, Ant
I was diagnosed 11 days ago Joined this site 7 days ago- and the information, advice and support from this wonderful group of people has meant that in this short period i am very close to being D free. After months of chronic symptoms
I second Ants comment
This is the best place to help you on your journey to remission. With best wishes, Ant
I was diagnosed 11 days ago Joined this site 7 days ago- and the information, advice and support from this wonderful group of people has meant that in this short period i am very close to being D free. After months of chronic symptoms
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama