I was diagnosed with MC and in rough shape for months. I asked my GI Doctor at a leading hospital here in Boston about probiotics, and he waved me off laughing saying there was no evidence of any of them working. (I was incline to believe him as I had tried other probiotic brands.)
I was prescribed Budesonide EC and days away from a lifetime regiment of the drug. In a last ditch effort I worked with a Nutritionist who tested me for food allergies and she instructed me to try VSL#3 packets (the strongest nonprescription option).
Result: I was put into remission within two days and have felt great for over a month now! I take VSL#3 every night before bed in a small glass on cold almond milk. Yes, it's expensive, but so is a cup of coffee every day at Starbucks. Even if you've tried other probiotics (as I did) VSL#3 is certainly worth a try. It's working for me! Good Luck!!
FYI - I read "Microscopic Colitis: What Really Causes Microscopic Colitis, Celiac Disease, and Other Autoimmune Diseases?" by Wayne Persky and it was excellent! I'm using it as a guide to avoid certain possible triggers.
VSL #3 is working for me!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Jake,
Welcome aboard. It's good to hear that you are in remission and doing well. For many years, GI specialists recommended probiotics to treat MC, but the members of this forum have always found that for most of us, probiotics either make no difference, or they make our symptoms much worse. It appears that probably fewer than roughly 3–5 % of us actually benefit from probiotics (at least during the recovery stage). After we are in remission, most of us are able to tolerate probiotics much better, but of course there is some question whether we need probiotics after we are in remission. And I notice that last December, the American Gastroenterological Association Institute finally changed their guidelines to officially recommend against the use of probiotics to treat MC, so that's why your doctor made that statement. You can download a copy of their guidelines at the link below (the probiotics recommendation is number 8 in their recommendation list):
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
If your browser doesn't show this as a complete live link (from one end to the other) you may have to copy and past the entire URL into your browser's address bar in order to get it to work correctly.
MC is a very complex disease and it seems to affect everyone differently. Likewise, treatments affect everyone somewhat differently because we all have different genetics, sensitivities, etc. But every so often, something that rarely works for others seems like a miracle treatment to certain individuals for whom the treatment happens to be surprisingly effective. When nothing seems to work, we have to keep looking for a solution, and in some of those cases there's always a possibility that there might be a probiotic that can help. And you are quite correct that the trick with probiotics is to find one that that will work work correctly on an individual basis. For most of us, probiotics are a low odds gamble, and unfortunately, many members here have tried VSL#3 (and many other types) over the years without success. It's good to hear that you are one of the lucky few who are able to find a probiotic that works for you.
Again, welcome to the group, and I hope that your remission continues forever.
Tex
Welcome aboard. It's good to hear that you are in remission and doing well. For many years, GI specialists recommended probiotics to treat MC, but the members of this forum have always found that for most of us, probiotics either make no difference, or they make our symptoms much worse. It appears that probably fewer than roughly 3–5 % of us actually benefit from probiotics (at least during the recovery stage). After we are in remission, most of us are able to tolerate probiotics much better, but of course there is some question whether we need probiotics after we are in remission. And I notice that last December, the American Gastroenterological Association Institute finally changed their guidelines to officially recommend against the use of probiotics to treat MC, so that's why your doctor made that statement. You can download a copy of their guidelines at the link below (the probiotics recommendation is number 8 in their recommendation list):
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
If your browser doesn't show this as a complete live link (from one end to the other) you may have to copy and past the entire URL into your browser's address bar in order to get it to work correctly.
MC is a very complex disease and it seems to affect everyone differently. Likewise, treatments affect everyone somewhat differently because we all have different genetics, sensitivities, etc. But every so often, something that rarely works for others seems like a miracle treatment to certain individuals for whom the treatment happens to be surprisingly effective. When nothing seems to work, we have to keep looking for a solution, and in some of those cases there's always a possibility that there might be a probiotic that can help. And you are quite correct that the trick with probiotics is to find one that that will work work correctly on an individual basis. For most of us, probiotics are a low odds gamble, and unfortunately, many members here have tried VSL#3 (and many other types) over the years without success. It's good to hear that you are one of the lucky few who are able to find a probiotic that works for you.
Again, welcome to the group, and I hope that your remission continues forever.
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 Tex and Gabes-Apg.
Tex - I agree with you 100%! We are all different and react to things differently.
Here's a bit more about my experience with VSL#3. My Nutritionist conducted a blood and stool test. The food test revealed I react somewhat badly to vanilla, cocoa, celery, cow's milk and banana, but I apparently react very badly to Spirulina and Squash. Squash?!?! ':roll:' Having a blood test tell me what food irritate me as an individual was huge for avoiding triggers. The stool test revealed I had Candida and a lot of Enterobacter. That test also helped me understand what natural remedies I could take to knock those pathogens out of my system. (I am not revealing what protocal worked for me as everyone is different and should look into what they should take as an individual. Something that works for one person may not work for another)
She did say VSL#3 in particular has a number of good outcomes for colitis (vs crohns). I am not sure why it's working for me, but I urge others to give this particular brand a try. BTW - I am not affiliated with VSL#3 or any pharma/ drug company. I'm just a 50 yr. old male musician who has a history of popping Pepcid's now and then after a night on the town. I did try another probiotic early on called - Ultimate Flora Adult Formula (15 billion) That did not help me at all. In fact, I think it made me feel worst. VSL#3 contains 8 strains and (450 billion vs. 15 billion)
I admit, it's VSL#3 is quite expensive and I've experienced a lot more gas, but the trade off for me is worth it. I still can't eat beans without a bit of an issue, as is the case for most of us; but I'm otherwise avoiding MY trigger foods and doing well so far. I'll try checking back in with progress in the coming weeks/months as I'm going to see if I can use every other day with the same results. Good luck to everyone here on this forum and have faith.
Tex - I agree with you 100%! We are all different and react to things differently.
Here's a bit more about my experience with VSL#3. My Nutritionist conducted a blood and stool test. The food test revealed I react somewhat badly to vanilla, cocoa, celery, cow's milk and banana, but I apparently react very badly to Spirulina and Squash. Squash?!?! ':roll:' Having a blood test tell me what food irritate me as an individual was huge for avoiding triggers. The stool test revealed I had Candida and a lot of Enterobacter. That test also helped me understand what natural remedies I could take to knock those pathogens out of my system. (I am not revealing what protocal worked for me as everyone is different and should look into what they should take as an individual. Something that works for one person may not work for another)
She did say VSL#3 in particular has a number of good outcomes for colitis (vs crohns). I am not sure why it's working for me, but I urge others to give this particular brand a try. BTW - I am not affiliated with VSL#3 or any pharma/ drug company. I'm just a 50 yr. old male musician who has a history of popping Pepcid's now and then after a night on the town. I did try another probiotic early on called - Ultimate Flora Adult Formula (15 billion) That did not help me at all. In fact, I think it made me feel worst. VSL#3 contains 8 strains and (450 billion vs. 15 billion)
I admit, it's VSL#3 is quite expensive and I've experienced a lot more gas, but the trade off for me is worth it. I still can't eat beans without a bit of an issue, as is the case for most of us; but I'm otherwise avoiding MY trigger foods and doing well so far. I'll try checking back in with progress in the coming weeks/months as I'm going to see if I can use every other day with the same results. Good luck to everyone here on this forum and have faith.
Interesting Jake-I may give this a try. It is expensive. I did some reading on it and looks like they mention IBS and UC and hit or miss for Crohns-like you said. I'll have to find a low key week and give it a shot. So glad to hear your story!
I have been very frustrated lately-I felt like I didn't have a "next thing" to try. I've gotten my diet in line, done Enterolab, 23andme, methylation, supplements, antihistamines, levels checked and still BM's not close to norman for well over a year. I never thought at the beginning this would be such a long road. Such a bizarre disease.
My friends/family cannot understand that after all this why things aren't "normal". Then, of course, I don't look sick (and I know on some level I'm healthier than I was last year) so people can't reconcile it. Doesn't help. Pity party over-onto the next thing!!!
Taia
I have been very frustrated lately-I felt like I didn't have a "next thing" to try. I've gotten my diet in line, done Enterolab, 23andme, methylation, supplements, antihistamines, levels checked and still BM's not close to norman for well over a year. I never thought at the beginning this would be such a long road. Such a bizarre disease.
My friends/family cannot understand that after all this why things aren't "normal". Then, of course, I don't look sick (and I know on some level I'm healthier than I was last year) so people can't reconcile it. Doesn't help. Pity party over-onto the next thing!!!
Taia
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Taia
every one is different... and to be fair, you are only about 4 months into fixing methylation cycle and correcting deficiencies/imbalances linked to that
it took me 2 years to resolve major methylation issues, and I still have B6 and zinc issues due to my combo of health issues.
For some, time and patience, and not overthinking things is our best healing agent.
every one is different... and to be fair, you are only about 4 months into fixing methylation cycle and correcting deficiencies/imbalances linked to that
it took me 2 years to resolve major methylation issues, and I still have B6 and zinc issues due to my combo of health issues.
For some, time and patience, and not overthinking things is our best healing agent.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Taia,
Dr. Scot Lewey was one of the first well-known celiac docs to prescribe VSL#3 to his patients. Part of the problem is the dairy ingredients. Also, the sweetened versions apparently contain maltose (which is a sweetener usually derived from barley malt, therefore making it a potential source of gluten). The question is, "How much gluten remains in the finished product"? Here's part of what he says about it:
Good luck, and if you try it, please keep us posted.
Tex
Dr. Scot Lewey was one of the first well-known celiac docs to prescribe VSL#3 to his patients. Part of the problem is the dairy ingredients. Also, the sweetened versions apparently contain maltose (which is a sweetener usually derived from barley malt, therefore making it a potential source of gluten). The question is, "How much gluten remains in the finished product"? Here's part of what he says about it:
http://thefooddoc.blogspot.com/2008/01/ ... -only.htmlThe unflavored packets and capsules are free of the sweetener maltose, as is the DS powder but all of the preparations may contain traces of dairy. There is extensive scientific data on VSL#3 in the literature. Based on some of that data, I am prescribing VSL#3 DS powder and recommending over the counter VSL#3 capsules and unflavored powder to my patients regularly. I am advising my patients to avoid the flavored form of VSL#3. Some of my patients report nausea with VSL#3, especially the double strength powder. Reducing the dose often helps prevent this side effect. I also caution those who are dairy allergic or sensitive to avoid VSL#3.
Good luck, and if you try it, please keep us posted.
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 can remember on another more general IBD forum I visit, in a poll conducted it was reported that different probiotics helping some and not others. Opinions varied greatly on how much they helped, with everything from remission to feeling somewhat better. In my opinion probiotics seemed to be something worth trying, most are not terribly expensive, but they were not widely helpful.
For me personally, I've tried many probiotics over the years. I believe VSL was one of them. None were helpful for me. My reactions varied from not noticing a difference, to developing headaches, causing an upset stomach I suspected, to turning ghostly deathly pale. As my father put it, I appeared death warmed over.... from that probiotic.
For me personally, I've tried many probiotics over the years. I believe VSL was one of them. None were helpful for me. My reactions varied from not noticing a difference, to developing headaches, causing an upset stomach I suspected, to turning ghostly deathly pale. As my father put it, I appeared death warmed over.... from that probiotic.
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nsaidcolitis
- Adélie Penguin
- Posts: 92
- Joined: Mon Nov 04, 2013 4:25 pm
I also had good results with VSL#3 I think it might help in keeping harmful bacteria under check by overcrowding the place of inflammation with it....who knows?
Does the one you have need to be refrigerated and do you refrigerate it? The reason why i stopped is that it needs refrigeration and since im no longer in the usa , shipping it outside and getting it refrigerated is troublesome expensive and almost impossible.
Does the one you have need to be refrigerated and do you refrigerate it? The reason why i stopped is that it needs refrigeration and since im no longer in the usa , shipping it outside and getting it refrigerated is troublesome expensive and almost impossible.
Hello! Yes, it must be emphasized that everyone is different, and the best we can do (and a huge thanks to all who share what they've tried and what works) is to tell others a bit about our own discoveries.
I, also, tried many probiotics per my first naturopathic doctor when I started having my MC symptoms, before my diagnosis. I do believe they may have made things worse. However, after my MC diagnosis, my GI doctor told me about the VSL3 probiotics, and that they were in a different league from all the others. I've been taking them for over 3 months now, and while I can't say for certain they are helping, my entire "regime" has me in or close to remission.
What I do is to take the CONTENTS of 3 VSL3 unflavored capsules (remove insides from the capsules themselves so I'm not ingesting the capsules) and pour that into a glass. Then I add 5 mg. l-Glutamine to the glass, and fill with 8-10 ounces of water. I drink this usually around 3 am (when I get up to go to the loo, luckily not with D!), so that it is definitely on an empty stomach. Until a week ago, I took another dose between lunch and dinner, again, on an empty stomach. The past week, I've been experimenting with taking this only once a day; so far, so good. (And for the first 4-6 weeks, I was taking 2 VSL3 capsules with the l-Glutamine; I definitely felt improvement, such as much less loud tummy rumbling, etc., when I upped my VSL3 dosage to contents of 3 instead of 2.)
I think everyone's comments are very valid. I guess my 2 cents are that I make sure I take them on an empty stomach, and I take them with the l-Glutamine, which I believe has definitely calmed down my intestines. I've also been very vigilant with my diet, and have been keeping my magnesium, methylated B's and Vit D levels high daily. My "brain fog" and depression have finally been much improved, also (my kitties are surprised to hear laughter in the house again!), and I've just received Tex's book (can't put it down) plus sent my EnteroLab sample in, so will see what else needs fine-tuning.
Not everything that's supposed to be good for us is good for us!!! That includes (IMO) probiotics, prebiotic foods (initially I tolerated them well, but after eliminating gluten, dairy, eggs and as much soy as possible, now I find I can't tolerate the fiber in sauerkraut or the fruit/veggie smoothies I used to ingest in early days before and right after MC diagnosis), fiber, and other foods we may not be expecting. As I read Tex's book, I'm realizing perhaps this is because now that I've removed the gluten and dairy from my diet and my gut seems to be healing well, my intestines are targeting other things (such as fiber, asparagus, avocado, etc.).
I personally think that the right probiotics may help with some forms of MC, and maybe not at all with others. It makes sense to me that they might help with certain gut flora balances, and that their effectiveness may also depend upon the amount and type of damage to the intestinal/digestive areas, plus a myriad of other things. I also have malabsorption issues, so that may be a factor they are helping with, along with the digestive/pancreatic enzymes I take prior to each meal/snack.
It is so great to see this forum grow, and see how much information between all of us we really have .... awesome!
~ Holly
I, also, tried many probiotics per my first naturopathic doctor when I started having my MC symptoms, before my diagnosis. I do believe they may have made things worse. However, after my MC diagnosis, my GI doctor told me about the VSL3 probiotics, and that they were in a different league from all the others. I've been taking them for over 3 months now, and while I can't say for certain they are helping, my entire "regime" has me in or close to remission.
What I do is to take the CONTENTS of 3 VSL3 unflavored capsules (remove insides from the capsules themselves so I'm not ingesting the capsules) and pour that into a glass. Then I add 5 mg. l-Glutamine to the glass, and fill with 8-10 ounces of water. I drink this usually around 3 am (when I get up to go to the loo, luckily not with D!), so that it is definitely on an empty stomach. Until a week ago, I took another dose between lunch and dinner, again, on an empty stomach. The past week, I've been experimenting with taking this only once a day; so far, so good. (And for the first 4-6 weeks, I was taking 2 VSL3 capsules with the l-Glutamine; I definitely felt improvement, such as much less loud tummy rumbling, etc., when I upped my VSL3 dosage to contents of 3 instead of 2.)
I think everyone's comments are very valid. I guess my 2 cents are that I make sure I take them on an empty stomach, and I take them with the l-Glutamine, which I believe has definitely calmed down my intestines. I've also been very vigilant with my diet, and have been keeping my magnesium, methylated B's and Vit D levels high daily. My "brain fog" and depression have finally been much improved, also (my kitties are surprised to hear laughter in the house again!), and I've just received Tex's book (can't put it down) plus sent my EnteroLab sample in, so will see what else needs fine-tuning.
Not everything that's supposed to be good for us is good for us!!! That includes (IMO) probiotics, prebiotic foods (initially I tolerated them well, but after eliminating gluten, dairy, eggs and as much soy as possible, now I find I can't tolerate the fiber in sauerkraut or the fruit/veggie smoothies I used to ingest in early days before and right after MC diagnosis), fiber, and other foods we may not be expecting. As I read Tex's book, I'm realizing perhaps this is because now that I've removed the gluten and dairy from my diet and my gut seems to be healing well, my intestines are targeting other things (such as fiber, asparagus, avocado, etc.).
I personally think that the right probiotics may help with some forms of MC, and maybe not at all with others. It makes sense to me that they might help with certain gut flora balances, and that their effectiveness may also depend upon the amount and type of damage to the intestinal/digestive areas, plus a myriad of other things. I also have malabsorption issues, so that may be a factor they are helping with, along with the digestive/pancreatic enzymes I take prior to each meal/snack.
It is so great to see this forum grow, and see how much information between all of us we really have .... awesome!
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
So I did end up ordering VSL#3 capsules. I started by taking 1/day about 10 days ago-just wanted to make sure I didn't have any adverse reactions. All good. Then about 5 days in I started taking 2 capsules every morning before eating/coffee etc. I have to say, they seem to settle everything down, fewer bathroom trips and stools beginning to become more normal than they have been. I'm going to play more with dosage as I see 4 capsules equal one packet and it seems many take at least 1 packet a day.
I wish it wasn't so $$$. Seems some pharmacies carry the non prescription capsules I have so I'll make a few calls based on their "finder" function on their website. Will keep you guys posted after I experiment with dosage more. So far, so good.
Taia
I wish it wasn't so $$$. Seems some pharmacies carry the non prescription capsules I have so I'll make a few calls based on their "finder" function on their website. Will keep you guys posted after I experiment with dosage more. So far, so good.
Taia