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I happened to come across this old message written by Dr. Fine, on July 13, 2001, in one of the newsletters in the archives of Judy Malinowski's original CC/MC Club (it preceded Sally's board). Sally started her board when Judy decided to stop hosting her CC/MC Club. I knew that Dr. Fine had changed his mind about the Pepto treatment roughly 10 years ago, but it's interesting to read it straight form the horse's mouth (so to speak ).
CC/MC Club Newsletter #192
13 July 2001
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Message from Dr. Fine
Dear MC/CC Newsletterers:
I want to thank you again for leading the way towards my new found mechanism of helping as many people as I can via my research and experience with MC/CC and the internet.
This begun with some of you internet pioneers searching for medical articles on the treatment of MC/CC when there was almost none to be found. In 1997 my research group first published an abstract, and in 1998, a full length article showing that Pepto Bismol can help the diarrhea and inflammation of MC/CC. A new publication on our placebo controlled-study proving Pepto is better than placebo (the latter doing nothing) will be published in the next year I hope.
The reason I am writing is to let you know that I no longer consider Pepto Bismol the first line approach to MC/CC. The reason is as follows. Although 90% of people improve on Pepto, 30-40% realpse. We now know that these relapses are due to gluten sensitivity. In fact 100% of people who relapse or never respond have the gluten sensitivity genes and stool antibody sensitivity; virtually all have mild small bowel inflammation as well. (However, normal biopses of the small intestine do not rule out gluten sensitivity.)
My first line approach to MC/CC is to get at its cause directly. To reduce the immune barage of the diet by testing for and eliminating gluten and possibily other immune-stimulating foods (dairy for example), and altering the intestinal flora so that it is less immuogenic.
I felt it necessary to report this since many people seem to request the abstract regarding treatment with Pepto Bismol, and/or try it on their own (which I discourage). It seems that people may get only one good beneficial round of Pepto Bismol treatment and if it is going to be used, it should be saved for ideal conditions. These ideal conditions would be after gluten is removed from the diet if people test positive in the stool for antibodies to gliadin. Blood tests have been shown in my study and another to be worthless for gluten sensitivity in MC/CC because the small bowel damage is too mild to allow them to be positive.
If anybody needs guidance in this area, feel free to email me at email@enterolab.com
Note that in the message he suggests that the Pepto Bismol treatment may only be effective a single time for each patient. I wasn't aware of that. Also note that he verifies that the blood tests are worthless for detecting the type of gluten sensitivity that we have with MC, which, of course, we already knew.
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.
Thanks for posting this. I am seeing some new people are trying that treatment.. wonder if the clueless doctors who are so far behind the curve on our illnesses.. are just catching up to using the now discarded pepto idea...:)
I especially like that he pointed out that it isn't wise to try that treatment on your own.
grannyh
GrannyH wrote:wonder if the clueless doctors who are so far behind the curve on our illnesses.. are just catching up to using the now discarded pepto idea...:)
I'm guessing than in about 10 years, they'll stop recommending it. For them, that's utilizing cutting edge technology.
You'll notice that when they recommend it, they conveniently forget to mention the need for a GF diet, concurrent with the treatment.
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.
I still reach for the Pepto tabs when I'm in a flare and one pill really calms things down. I find the black D it causes strangely comforting. I also notice it takes all the odor of the D away - not sure by what mechanism it does that.
I am on my FIFTH GI doc in a year and half and this one I have now told me about the elimination diet the first day he saw me, told me to take pepto in large quantities if needed, told me to go gluten free, dairy free and soy free...He must be an enlightened one! (I live in Atlanta if someone wants his name).
Best to all,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I'm currently taking the Pepto regimen under doctor's orders after Asacol made me worse. I've been GF since July 1 and DF since Aug. 24. Hoping with the combination of all that, I can hopefully go into remission. I'm on week 6 of Pepto (6 tablets a day now). It has given me my life back for now and have gained some weight back as well. After reading about Bismuth Subsalicylate toxicity, I kind of freaked out and started lowering my dosage as of last week (though I'm having no symtoms from the Pepto). I will continue to wean over the next couple of weeks. I suppose if this doesn't work then Entocort would be the next option for me but hoping I can do without meds by just tweaking my diet but hoping I have tweaked it enough already.
Only time will tell. I probably will never go back to Pepto as Immodum works great for me as well and is safer to take.
Wish me luck!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I'd like to add your GI doc to our list, if you're willing to share him with other patients.
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.
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.
Monique,
You HAVE TO dine at a restaurant I just visited last week while on a business trip to CDC. Have you been to Anis Bistro in Buckhead? I was so impressed I wrote a review on the Gluten Free Travel Site.
Terri,
Regarding the Pepto Regimen, I truly believe you don't need the full dose to get the same effect. I was taking one tablet three times a day, or 2 tablets twice a day. When I'm in a flare, I only take one dose for the entire day and it really helps. One single tablet even makes a noticeable difference for me.
I heard about Anis in Buckhead. I'll go when I feel safe with food. Right now I am going through a food phobia phase---mostly restaurants. I am sure I'll love it! sounds like my kind of place. I love Bistro food! Didn't know about their GF menu...
Thanks,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Zizzle....I would probably still do good taking less just paranoid right now. I keep thinking about toxicity as I've been taking it for 6 weeks. Next week I will do 4, then go down to 2. I haven't gone in remission yet so hoping the high doses have worked. I was taking just one Imodium a day and keeping the D away so I'm sure one or 2 Peptos a day would work just as well....just afraid right now that I have too much of the chemical inside me. I will take it occasionally if I have to but would rather just take Imodium. I'm glad that Pepto works for you so well.....have heard otherwise from a lot of people. I just consider myself one of the lucky ones I suppose. Before I got on Pepto I was having WD 1 to 3 times a day so not too bad....but not happy with that.....want Normans again without the meds. I do realize I may be taking Imodium (very small dosage) for a long time. When I hear about people going GF/SF/DF/EF and legume free and STILL have problems, it's really very discouraging as I've only given up Gluten and Dairy. I can't imagine giving up all that and still having D....why? Just doesn't make sense unless there is some contamination involved. Why do our bodies have to reject practically everything we eat? Just a little scared right now as I don't want to be that bad off. If I lose anymore weight, I'll look anorexic.
Just PMS-ing right now. Will be in a better frame of mind next week....lol! Sometimes I wish I just had Celiac disease and not LC....sounds easier to control. I thought getting off my (trigger drug) would cause me to go into remission but no such luck. Oh...to better days ahead hopefully. Knowing my drug therapy is almost over has me a little tense....so scared of going back to 1 to 3 WD a day like I was 7 weeks ago.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I don't have normans as a result of taking Pepto. I'm not sure I ever have. I take it to relieve discomfort after I've eaten something my body has rejected. It calms things down and slows things down, but not to Norman levels. I seem to have multiple food and chemical sensitivities, not just the biggies, so I rarely see Norman. But I feel good overall, despite WD once or twice a day. Oh, and a freakin' itchy rash that's gonna make me jump off a bridge someday!!
Wow...that's great that you feel good while still having a little WD every day. Like I said I was having it 1 to 3 times a day and eventually, the weakness and fatigue hit. Yes, Pepto is very calming. Pepto and Imodium always give me Norms every day but I can tell a difference between the two. Imodium tends to give me a full feeling and maybe an occasional stomach ache but Pepto is calming everywhere in the digestive tract for me. Gonna miss taking it every day....sad but true.
Oh I can't imagine an itchy rash. Hope you don't have it all the time! I don't get the skin issues associated sometimes with Celiac and MC which is good cause I can barely tolerate 2 to 3 times of WD a day. I'm too puny!
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
).
I wasn't aware of that. Also note that he verifies that the blood tests are worthless for detecting the type of gluten sensitivity that we have with MC, which, of course, we already knew.
For them, that's utilizing cutting edge technology. 
