Brief recap: Diagnosed with CC MC in January 2022. Budesinide for eight weeks in February and March 2022 with success but regressed after stopping steroid. In June I discovered this forum and had Enterolab testing completed. My testing scores for gluten (14), dairy (15), egg whites (14), soy (8), 11 antigenic foods score of 11 (with no #3 in this category). I have been GF, DF, egg-white free, and soy free since I received those test results.
My success rate with my diet has been a bit of a roller coaster. Up to 8 weeks of #3/#4 and then something would set me back. Those things that set me back were things that I either tried to eat or a supplement I tried to add or I tried too many things at once, but I did eventually improve from WD to a period with #4/#5/#6 in a few days. I will admit that I had not been as strict as I should have been in controlling the variety of foods.
Since early November, WD began and during this time I've had a rare skinny stool a couple of times. I've had a very restricted diet and the WD has not abated, which led me to the decision two weeks ago to try the pepto-bismol protocol as I had upcoming travel plans. Pepto protocol taken has been 3 tablets 3 times a day.
Since early November, my diet for the most part consists of chicken, pork (including prosciutto and bacon but very limited quantities as I have an extremely high fecal fat score of 1529), turkey, white potatoes, and carrots. Two days ago I ate my first banana and yesterday, green beans for this time period. All of these foods mentioned have been on my safe food list in the past six months. During this eight weeks, I also did try a sweet potato/squash/pork soup recipe (found on this forum) but after two small servings decided it was disastrous for me.
Today is day 14 and the WD has not ceased except for one day when I had a #4. Don't know if it significant or not, but I'll mention it anyway - when I began the protocol, my WD was black (as expected) but the past week it is varying shades of brown. Additionally, trips to the toilet in a 24 hour period of time range from 1 - 19. In 13 days, I had 96 trips to the toilet for an average of 7.3 visits per 24 hour period.
My question for this forum - I am seeking thoughts on whether or not I should continue the pepto-bismol protocol after two weeks without change in the WD.
Thank you.
------beverlee
Two weeks on Pepto-Bismol
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Two weeks on Pepto-Bismol
Good question. Your fecal fat score is so high that it suggests that your diet is being cross contaminated with gluten. However, your EnteroLab anti-gladden antibody score contradicts that possibility. Consequently, I'm wondering if you might have selective IgA deficiency, which would cause your EnteroLab scores to be suppressed. It's a simple blood test. Has your doctor ever ordered one for you?
The original test trial for the Pepto treatment lasted for eight weeks, but the average time to remission was listed as two weeks. If I were in your situation, I would give the treatment at least one more week, because the most common reason for treatment failure when making diet changes is giving up too soon.
As general information, controlling MC symptoms by diet only works if every food sensitivity is avoided 100%, all the time. Every accidental exposure causes a significant setback, and if anything in our diet is cross contaminated, that normally prevents us from being able to reach remission, because the more we restrict our diet, the harder our immune system looks for exposures. That's why 100% avoidance is necessary, at least during recovery.
I hope this helps.
Tex
The original test trial for the Pepto treatment lasted for eight weeks, but the average time to remission was listed as two weeks. If I were in your situation, I would give the treatment at least one more week, because the most common reason for treatment failure when making diet changes is giving up too soon.
As general information, controlling MC symptoms by diet only works if every food sensitivity is avoided 100%, all the time. Every accidental exposure causes a significant setback, and if anything in our diet is cross contaminated, that normally prevents us from being able to reach remission, because the more we restrict our diet, the harder our immune system looks for exposures. That's why 100% avoidance is necessary, at least during recovery.
I hope this helps.
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.
Re: Two weeks on Pepto-Bismol
Tex - Thank you for your reply - it does help and gives me the needed encouragement I need and for that I am grateful.
Regarding cross contamination - my husband was diagnosed years ago as "gluten sensitive". Since we cook and prepare all our food from scratch, it was easy to eliminate gluten upon his diagnosis. I will admit that when the grandkids visit, I do make buttermilk pancakes from scratch with soft wheat berries (low gluten) that I grind myself. The griddle is only used for pancakes and everything else is thoroughly washed. I do believe I have had 100% avoidance of gluten since July when I received my test results - meaning I haven't eaten anything with gluten since that time. I'll review my calendar and spreadsheet when the November flare began to see if I can make any correlation to possible gluten exposure.
I'll send my doctor a message to ask about that particular blood test with him. Hopefully, I can get him to order it for me.
Thank you again for your kind response - you are greatly appreciated.
------beverlee
Regarding cross contamination - my husband was diagnosed years ago as "gluten sensitive". Since we cook and prepare all our food from scratch, it was easy to eliminate gluten upon his diagnosis. I will admit that when the grandkids visit, I do make buttermilk pancakes from scratch with soft wheat berries (low gluten) that I grind myself. The griddle is only used for pancakes and everything else is thoroughly washed. I do believe I have had 100% avoidance of gluten since July when I received my test results - meaning I haven't eaten anything with gluten since that time. I'll review my calendar and spreadsheet when the November flare began to see if I can make any correlation to possible gluten exposure.
I'll send my doctor a message to ask about that particular blood test with him. Hopefully, I can get him to order it for me.
Thank you again for your kind response - you are greatly appreciated.
------beverlee
Re: Two weeks on Pepto-Bismol
Beverlee,
I initially thought that I was being very meticulous with my diet also, but another individual in the house was occasionally baking with regular wheat flour. I discovered that being careful was not enough, because any time a bag of flour was opened, the flour dust is so fine, that it drifts everywhere, including into other rooms, into cabinets, drawers, and everywhere else, to settle out. It settles on dishes in cabinets, knives, forks, and spoons in drawers, and on countertops. So everything gets contaminated after touching the countertop, if it isn't already contaminated by the drifted flour. Grinding your own flour might seem safer, but I doubt that it will prevent cross-contamination in the long run.
I'm speaking from experience. I had to move into my own place, and do my own cooking in order to stay in remission. And there is absolutely no gluten to be found anywhere, here. Growing up on a farm, and still living on a farm, I have to stay on the lookout for rattlesnakes here in central Texas. But frankly, I'd rather see a rattlesnake than a bag of wheat flour, because I can always see (or hear) where that rattlesnake is located. By contrast, flour dust can sneak up on us, undetected.
Tex
I initially thought that I was being very meticulous with my diet also, but another individual in the house was occasionally baking with regular wheat flour. I discovered that being careful was not enough, because any time a bag of flour was opened, the flour dust is so fine, that it drifts everywhere, including into other rooms, into cabinets, drawers, and everywhere else, to settle out. It settles on dishes in cabinets, knives, forks, and spoons in drawers, and on countertops. So everything gets contaminated after touching the countertop, if it isn't already contaminated by the drifted flour. Grinding your own flour might seem safer, but I doubt that it will prevent cross-contamination in the long run.
I'm speaking from experience. I had to move into my own place, and do my own cooking in order to stay in remission. And there is absolutely no gluten to be found anywhere, here. Growing up on a farm, and still living on a farm, I have to stay on the lookout for rattlesnakes here in central Texas. But frankly, I'd rather see a rattlesnake than a bag of wheat flour, because I can always see (or hear) where that rattlesnake is located. By contrast, flour dust can sneak up on us, undetected.
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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Gabes-Apg
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Re: Two weeks on Pepto-Bismol
just to expand on Tex's point about gluten contamination
there is also the plates, cutlery and utensils, mixing bowl having contact with the gluten
and the dust from the flour will contaminate the kitchen
(there is a MC foundation newsletter about this)
keep in mind that we can also react to non gluten items such as soy, and gluten replacement flours
are you eating any gluten free processed food items? using gluten free flours?
what oils are you using for cooking? what are you drinking each day?
have you checked all the bathroom and beauty products for gluten/ wheatgerm?
there is also the plates, cutlery and utensils, mixing bowl having contact with the gluten
and the dust from the flour will contaminate the kitchen
(there is a MC foundation newsletter about this)
keep in mind that we can also react to non gluten items such as soy, and gluten replacement flours
are you eating any gluten free processed food items? using gluten free flours?
what oils are you using for cooking? what are you drinking each day?
have you checked all the bathroom and beauty products for gluten/ wheatgerm?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Two weeks on Pepto-Bismol
Gabes -
Thanks for the reply - appreciate your time and sharing of your expertise (Tex too).
Personal Products - I've been meaning to check my personal products - and your reply inspired me to do just that. Most of my products are single ingredient but the exception would be my makeup/sunscreens. That meant getting out the gigantic magnifier to verify that they are GF. It's pretty interesting the list of ingredients on my foundation/sunscreen make-up, such as green tea extract, goji berry extract, etc.. but even more interesting after squinting my way through the long list is that at the top it is marked "GF" (insert eye roll here).
GF Processed Foods- None of these in the house - mostly because they all contain bad seed oils.
GF Flour - Is a blend that I make myself (almond, coconut flours and arrowroot).
Oils - Single Source Olive Oil, lard, tallow (I render both of these), and bacon grease. Occasionally I use coconut oil or avocado oils but I have not used them in several months.
Beverages - Water and carbonated water - unflavored. A mug of loose leaf black tea in the mornings.
The good news is that the past 96 hours have been good - no D - all #4. YEEHA!!
-----beverlee
Thanks for the reply - appreciate your time and sharing of your expertise (Tex too).
Personal Products - I've been meaning to check my personal products - and your reply inspired me to do just that. Most of my products are single ingredient but the exception would be my makeup/sunscreens. That meant getting out the gigantic magnifier to verify that they are GF. It's pretty interesting the list of ingredients on my foundation/sunscreen make-up, such as green tea extract, goji berry extract, etc.. but even more interesting after squinting my way through the long list is that at the top it is marked "GF" (insert eye roll here).
GF Processed Foods- None of these in the house - mostly because they all contain bad seed oils.
GF Flour - Is a blend that I make myself (almond, coconut flours and arrowroot).
Oils - Single Source Olive Oil, lard, tallow (I render both of these), and bacon grease. Occasionally I use coconut oil or avocado oils but I have not used them in several months.
Beverages - Water and carbonated water - unflavored. A mug of loose leaf black tea in the mornings.
The good news is that the past 96 hours have been good - no D - all #4. YEEHA!!
-----beverlee
Re: Two weeks on Pepto-Bismol
It's good to see that you're making some good progress. And it appears that you've been doing your homework on all those products you use, so you've certainly earned that progress with hard work. Good for you. Hopefully you'll soon be in stable remission, as long as nothing rocks the boat.
Tex
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.