Hi, I'm new to the forum and the advice here has already helped enough (diet, phase1) that my 6-week "run" of LD has been stopped. I'm very thankful and have spent many hours reading the advice here, but I've got a bunch of questions specific to my history.
Prior to my CC diagnosis this summer, I've had a few years of off-and on D and three episodes of SIBO. The first-ever real gastric distress of my life was Dec of 2019 when I got food poisoning from clams I bought while traveling in Maine. They were frozen (raw) and I stupidly used them as though they were canned (cooked). The SIBO was life-changing because the D was accompanied by SO MUCH GAS. After kicking that with rifaximin, I rebuilt my gut and eliminated gluten and life was normal until a year later... more SIBO. Abd then again in May of 2023. So 3x SIBo (once diagnosed with breath test and twice assumed). Rifaximin and low FODMAP diet helped each time, but I've become more and more sensitive to gluten over that timeframe, so it's been off my plate for about 2.5 years.
This fall, after an extremely stressful few months where we lost my husband's mom and sister, I had accidental gluten exposure 5 dsys in a row from not readingba label on a food that had a changevto the recipe. I was hit with LD (13x in 12 hours), and I ASSUMED it was SIBO again because it was accompanied by a lot of gas. I messaged my PCP to ask about getting rifaximin and she said "let's try budesonide instead, because of the MC diagnosis."
I took 9mg per day for 4 weeks and only had 2 formed stools in that whole time frame, but continued to have a lot of gas. So I've gotten the breath test for SIBO and will be taking it very soon. I'm still on the Budesonide, just about to taper from 6mg to 3mg.
Meanwhile, starting 1 week ago, I began the bland diet as described here. Since then, the past 5 days have been the most "normal" toileting since Oct 2. And the gas is almost completely gone (but as my husband pointed out, I've stopped eating food that would cause any gas!)
So... my questions: 1) Is it common for for MC to cause a lot of gas? 2) is it possible (or common) to have BOTH MC and SIBO at the same time?
The SIBO breath test arrived yesterday and so did the Enterolab test kit. In order to do the SIBO test, I fast and then drink lactulose, and then breathe into the vials. I assume lactulose is dairy so I'm prepared for a temporary setback in symptoms, but feel it is important to know if Im fighting SIBO again in additionto MC. Question #3: Which test should I do first? Will ingesting the dairy cause my Enterolab results to skew? I'm thinking I should do Enterolab first and then the SIBO?
I'd appreciate any feedback on this. I do not yet have Tex's book, so I still have a lot to learn. Right now I need to navigate the testing, and then I'll learn everything I can about this (and I have a bunch more questions!) Thank you all in advance!
Joan
Wisconsin,.USA
SIBO and MC ? Trying to sort this out....
Re: SIBO and MC ? Trying to sort this out....
Hi Joan,
Welcome to the group. I'll try to answer your questions as best I can.
Most people don't seem to realize that their microbiome depends on their diet. There are precious few things we can actually do to change our microbiome, other than taking an antibiotic (which usually kills every bacteria in the gut, regardless of whether they're considered good or bad), or changing our diet. In the long run, even if we kill everything by taking an antibiotic, our microbiome is going to regenerate to whatever balance of species fits the foods in our diet, and our ability to digest those foods. When we develop poor digestion, our microbiome leans toward bacterial species that are generally considered to be undesirable, and as our digestion improves, our microbiome balance regains a more normal composition that's generally considered to be beneficial. But the specific species of gut bacteria that we carry around are always going to be determined by the types and amounts of foods in our diet (and our ability to properly digest them).
I hope this helps. Again, welcome to the group, and please feel free to ask anything.
Tex
Welcome to the group. I'll try to answer your questions as best I can.
MC itself doesn't create gas, but the incomplete digestion that the inflammation associated with MC causes allows opportunistic bacteria to generate gas as they ferment all the partially-digested food in our colon. And as your husband pointed out, certain foods tend to generate gas, such as cruciferous vegetables.Joni T wrote:So... my questions: 1) Is it common for for MC to cause a lot of gas? 2) is it possible (or common) to have BOTH MC and SIBO at the same time?
if it were me, I'd do the EnteroLab testing first, because virtually all of us have SIBO when MC is active, due to the poor digestion. Usually, any SIBO symptoms will resolve as the inflammation associated with MC is brought under control, and our digestion improves. The undesirable gut bacteria will die out and be replaced by other species as their food source (partially digested food) disappears, so there's usually no point in trying to treat those pathogenic bacteria in the first place (unless they are really, honest-to-goodness life-threatening bacteria, such as some species of E. coli. Clostridium botulinum, Yersinia pestis, or something of that sort.Joni T wrote:The SIBO breath test arrived yesterday and so did the Enterolab test kit. In order to do the SIBO test, I fast and then drink lactulose, and then breathe into the vials. I assume lactulose is dairy so I'm prepared for a temporary setback in symptoms, but feel it is important to know if Im fighting SIBO again in additionto MC. Question #3: Which test should I do first? Will ingesting the dairy cause my Enterolab results to skew? I'm thinking I should do Enterolab first and then the SIBO?
Most people don't seem to realize that their microbiome depends on their diet. There are precious few things we can actually do to change our microbiome, other than taking an antibiotic (which usually kills every bacteria in the gut, regardless of whether they're considered good or bad), or changing our diet. In the long run, even if we kill everything by taking an antibiotic, our microbiome is going to regenerate to whatever balance of species fits the foods in our diet, and our ability to digest those foods. When we develop poor digestion, our microbiome leans toward bacterial species that are generally considered to be undesirable, and as our digestion improves, our microbiome balance regains a more normal composition that's generally considered to be beneficial. But the specific species of gut bacteria that we carry around are always going to be determined by the types and amounts of foods in our diet (and our ability to properly digest them).
I hope this helps. Again, welcome to the group, 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.
Re: SIBO and MC ? Trying to sort this out....
Thank you so much! It's wonderful to have this resource and your years of experience! As you suggested, I did delay my SIBO test until yesterday after I did the Enterolab testing on Monday. (I just sent them both in today.) Over the weekend, however, I began to be constipated. I'd been on the stage 1 elimination diet for 2 weeks and was 5 or 6 days away from tapering the budesonide from 6 mg per day to 3 mg per day.
I searched for "constipation" here on the forum and found advice to begin tapering to the next lower level if constipation becomes a problem. So on Sunday morning I began the 3mg phase of my budesonide - about 5 days sooner than scheduled. Monday morning (with no changes at all in my diet) I went back to D, which persisted all day Monday and Tuesday. And of course, taking the LACTULOSE for the SIBO test on Tuesday added to the discomfort and by Tuesday evening I had gas and bloating along with LD. I barely slept last night. I'm still on the same diet that helped me so much 2 weeks ago. The only thing I can think to add to my "elimination" list is eggs. I've cut out everything else that is recommended for phase 1, and I was able to have very normal stools for almost 2 weeks, even while eating eggs. Could eggs have been OK last week, but no longer OK?
My vitamin D levels are between 90 and 100 -- my MD says they are a little TOO high but my ND says he likes to see levels that high! I've been taking a quality magnesium (Mag-Tech) at about 300mg elemental per day for the past 2 or 3 months but I've switched to the brand recommended here, and am taking 3 tablets per day. I don't imagine that I am extremely deficient but plan to increase to 4 tablets a day once this LD goes away.
The complicating factor right now is a case of shingles that I just can't seem to shake. It started 2 weeks before my life-changing LD event the first week of October. I lost my mother-in-law Sept 4 and my sister-in-law early summer, and we've had a very stressful fall in many ways. I've had mild, transitory episodes of shingles "feeling" on my shoulder (neuralgia) without any visible rash for about 20 years, anytime I was under a lot of stress, but this is the first time it's actually broken out in a rash with blisters. I thought I was almost over it a week ago, but it started itching and burning again the middle of last week. It looks like it's going to break out in blisters again. My MD has been pestering me to get the vaccine but when I read about it, the information says not to have the vaccine if you have an active case. My thinking is that the Budesonide isn't helping. I know it trains the immune system to ignore symptoms. The small but real amount that isn't staying in my gut is probably dumbing down my immune system and allowing the shingles to get the upper hand again.
So I would like to get off the Budesonide as soon as I can, but the fact that I immediately reverted to D after reducing the dose makes me wonder if perhaps I need to stay on it until I get my Enterolab results and can start a diet that is tailored to my food sensitivities. I'm not sure. Other people must have experience balancing steroid use for the MC with the issues it causes in the immune system. Has anyone else had experience with MC and shingles, and what do you do about the steroid?
Thank you for reading this long thing!
Joan
I searched for "constipation" here on the forum and found advice to begin tapering to the next lower level if constipation becomes a problem. So on Sunday morning I began the 3mg phase of my budesonide - about 5 days sooner than scheduled. Monday morning (with no changes at all in my diet) I went back to D, which persisted all day Monday and Tuesday. And of course, taking the LACTULOSE for the SIBO test on Tuesday added to the discomfort and by Tuesday evening I had gas and bloating along with LD. I barely slept last night. I'm still on the same diet that helped me so much 2 weeks ago. The only thing I can think to add to my "elimination" list is eggs. I've cut out everything else that is recommended for phase 1, and I was able to have very normal stools for almost 2 weeks, even while eating eggs. Could eggs have been OK last week, but no longer OK?
My vitamin D levels are between 90 and 100 -- my MD says they are a little TOO high but my ND says he likes to see levels that high! I've been taking a quality magnesium (Mag-Tech) at about 300mg elemental per day for the past 2 or 3 months but I've switched to the brand recommended here, and am taking 3 tablets per day. I don't imagine that I am extremely deficient but plan to increase to 4 tablets a day once this LD goes away.
The complicating factor right now is a case of shingles that I just can't seem to shake. It started 2 weeks before my life-changing LD event the first week of October. I lost my mother-in-law Sept 4 and my sister-in-law early summer, and we've had a very stressful fall in many ways. I've had mild, transitory episodes of shingles "feeling" on my shoulder (neuralgia) without any visible rash for about 20 years, anytime I was under a lot of stress, but this is the first time it's actually broken out in a rash with blisters. I thought I was almost over it a week ago, but it started itching and burning again the middle of last week. It looks like it's going to break out in blisters again. My MD has been pestering me to get the vaccine but when I read about it, the information says not to have the vaccine if you have an active case. My thinking is that the Budesonide isn't helping. I know it trains the immune system to ignore symptoms. The small but real amount that isn't staying in my gut is probably dumbing down my immune system and allowing the shingles to get the upper hand again.
So I would like to get off the Budesonide as soon as I can, but the fact that I immediately reverted to D after reducing the dose makes me wonder if perhaps I need to stay on it until I get my Enterolab results and can start a diet that is tailored to my food sensitivities. I'm not sure. Other people must have experience balancing steroid use for the MC with the issues it causes in the immune system. Has anyone else had experience with MC and shingles, and what do you do about the steroid?
Thank you for reading this long thing!
Joan
Re: SIBO and MC ? Trying to sort this out....
I'm sorry to hear about the loss of your mother-in-law and your sister. The stress you are under probably triggered the shingles eruption. The loss of your sister may have triggered the development of microscopic colitis. Why? Because stress weakens the immune system and causes inflammation, and that opens the door to autoimmune diseases, such as MC. The loss of your mother-in-law almost surely added to your stress level, and with such a high level of chronic stress, that could easily explain the unexpected reaction earlier this week.
I doubt that the budesonide is affecting your case of shingles, although it's not impossible. Normally, long-term use of a corticosteroid may increase the risk of singles, but a short-term treatment is not so likely to have an effect, especially since budesonide targets the intestines, and only about 10 or 15% of the drug is able to cause systemic effects.
If I were in that situation, I would stay the course, and do my best to find ways to lower my stress level. That said, you might call or email your GP's office for an opinion on whether the budesonide might be contributing to the singles flare.
Tex
I doubt that the budesonide is affecting your case of shingles, although it's not impossible. Normally, long-term use of a corticosteroid may increase the risk of singles, but a short-term treatment is not so likely to have an effect, especially since budesonide targets the intestines, and only about 10 or 15% of the drug is able to cause systemic effects.
If I were in that situation, I would stay the course, and do my best to find ways to lower my stress level. That said, you might call or email your GP's office for an opinion on whether the budesonide might be contributing to the singles flare.
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: SIBO and MC ? Trying to sort this out....
Thank you! I think that does make sense... even at 6 mg budesonide I was probably getting less than 1mg systemically... not enough risk to the shingles healing to outweigh the benefits of calming the MC.
I am waiting for my enterolab results and reading (over and over) the posts about phase 1 and 2 for the diet, and I keep coming up with the same question: how will I know when I'm ready to move to stage 2? Is there a link or a post that you could point me to which would explain that? Its something i couldnt find. Obviously, I know it's going to be quitw awhile yet,.but it would be nice to have a roadmap in advance!
Thank you!
I am waiting for my enterolab results and reading (over and over) the posts about phase 1 and 2 for the diet, and I keep coming up with the same question: how will I know when I'm ready to move to stage 2? Is there a link or a post that you could point me to which would explain that? Its something i couldnt find. Obviously, I know it's going to be quitw awhile yet,.but it would be nice to have a roadmap in advance!
Thank you!
Re: SIBO and MC ? Trying to sort this out....
The Stage I Diet should put you in remission if you stick with it long enough. Once your bowel habits have returned to normal, it's safe to move on to stage 2.
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.
Re: SIBO and MC ? Trying to sort this out....
Greetings MC Friends,
Once again I am so grateful to have this community of people who have gone through, grappled with, and been frustrated by, the very same issues as me. What a relief to find I am not alone in this process!
I just started a course of Budesonide 3 days ago, and immediately went from D multiple times a day to C - no action for the 3 days. I do have some gas, and "dishwasher belly", but not too bad. Now that I am on the Budesonide, I feel I have lost the natural bio feedback I had before, but I have stopped losing weight which feels important.
I have been diagnosed with SIBO in the past, and treated it with an herbal anti-microbial called Atrantil, along with something called Bio Film Defense, which as I understand it helps break down the protective coating of the "bad" bacteria. I'm trying to decide if I should take the Atrantil and Bio Film Defense again, or hold steady with just the Budesonide.
I am on an elimination diet based on A1 Entero Lab results - only eating chicken, chicken bone broth, oats, sweet potato, well cooked carrots, coconut oil, salt, and water. My lab results said cashews are okay for me but I read here that nuts are better as part of a phase 2 diet, so I am not eating them at this time. I didn't test for sweet potato, carrots, or coconut oil, but in the past I have found them to be safe in a colitis flare up. I am also taking a gluten (dairy, soy, sugar, etc.) free electrolytes supplement.
Normally when I have C, I reach for fruit, baked beans, prune juice - all things no longer on my safe list.
From what I just read in the exchange above, it sounds like my best bet is to just stay on my phase 1 diet, and be patient. I'm a little concerned that my "signal" to start tapering the Budesonide is C...which I already have after only 3 days on the Budesonide. Obviously its not time to start tapering yet.
Looking forward to hearing any thoughts, suggestions, or advice. Thanks so much!
Lisa
Once again I am so grateful to have this community of people who have gone through, grappled with, and been frustrated by, the very same issues as me. What a relief to find I am not alone in this process!
I just started a course of Budesonide 3 days ago, and immediately went from D multiple times a day to C - no action for the 3 days. I do have some gas, and "dishwasher belly", but not too bad. Now that I am on the Budesonide, I feel I have lost the natural bio feedback I had before, but I have stopped losing weight which feels important.
I have been diagnosed with SIBO in the past, and treated it with an herbal anti-microbial called Atrantil, along with something called Bio Film Defense, which as I understand it helps break down the protective coating of the "bad" bacteria. I'm trying to decide if I should take the Atrantil and Bio Film Defense again, or hold steady with just the Budesonide.
I am on an elimination diet based on A1 Entero Lab results - only eating chicken, chicken bone broth, oats, sweet potato, well cooked carrots, coconut oil, salt, and water. My lab results said cashews are okay for me but I read here that nuts are better as part of a phase 2 diet, so I am not eating them at this time. I didn't test for sweet potato, carrots, or coconut oil, but in the past I have found them to be safe in a colitis flare up. I am also taking a gluten (dairy, soy, sugar, etc.) free electrolytes supplement.
Normally when I have C, I reach for fruit, baked beans, prune juice - all things no longer on my safe list.
From what I just read in the exchange above, it sounds like my best bet is to just stay on my phase 1 diet, and be patient. I'm a little concerned that my "signal" to start tapering the Budesonide is C...which I already have after only 3 days on the Budesonide. Obviously its not time to start tapering yet.
Looking forward to hearing any thoughts, suggestions, or advice. Thanks so much!
Lisa
-
Gabes-Apg
- Emperor Penguin
- Posts: 8339
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: SIBO and MC ? Trying to sort this out....
my suggestion
reduce the budenside to 6mg per day
gentle approaches to resolving C
- increase magnesium intake. - orally and use magnesium spray on your tummy to help stomach push through the poop
- increase water intake
- increase safe oil intake and fatty meat intake
- peeled apple eaten slowly
- increase safe veggies well cooked intake
avoid high fibre as this tends to bulk the stool and will make it harder to pass
be patient - reducing the dosage and doing these things it may take 2-3 days to see improvement.
reduce the budenside to 6mg per day
gentle approaches to resolving C
- increase magnesium intake. - orally and use magnesium spray on your tummy to help stomach push through the poop
- increase water intake
- increase safe oil intake and fatty meat intake
- peeled apple eaten slowly
- increase safe veggies well cooked intake
avoid high fibre as this tends to bulk the stool and will make it harder to pass
be patient - reducing the dosage and doing these things it may take 2-3 days to see improvement.
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: SIBO and MC ? Trying to sort this out....
Thanks Gabes! I will try these things. If I have success, should I stay on the 6 MG of Budesonide per day, or go back up to the 9 MG day. I didn't know you could get magnesium in a spray form, I will look for it.
Thanks again,
Lisa
Thanks again,
Lisa
-
Gabes-Apg
- Emperor Penguin
- Posts: 8339
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: SIBO and MC ? Trying to sort this out....
If being on 6mg means you are not having D and not having C I would stay on that dosage while you fine tune diet (ie how much mild fibre you need that won't cause D)
topical magnesium and foot soaks have been a key saviour to my wellness
topical magnesium and foot soaks have been a key saviour to my wellness
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
jessica329
- Adélie Penguin
- Posts: 215
- Joined: Thu Oct 11, 2012 6:47 pm
- Location: CT
Re: SIBO and MC ? Trying to sort this out....
Regarding SIBO, I cleared mine by eating plain sheep milk's yogurt daily. After about 6 months, I stopped eating the yogurt (I have to go to a specific store to get the yogurt and I was too lazy to continue going to this store just to get yogurt) and the SIBO came roaring back. Restarted the yogurt and the SIBO went away.
Jessica
Lymphocytic colitis August 2012
Lymphocytic colitis August 2012
Re: SIBO and MC ? Trying to sort this out....
Good Wednesday morning, I am starting to feel a little stronger, thankfully! But I am still struggling with C. When I started the Budesonide, I went from multiple D per day to nothing for 3 days. Then I tried Gabes' suggestion of reducing Budesonide to 6 MG per day, and adding fat, apple, magnesium, more water into my diet, and had a poop. Keeping all those additions and reductions the same, I have gone 4 more days with no poop. I feel like I need to do something more- reduce Budesonide to 3 MG per day? Add in some dates or other dried fruit? Thanks so much for any suggestions, and J thanks for the suggestion about sheep's milk yogurt!
Best,
Lisa
Best,
Lisa
Re: SIBO and MC ? Trying to sort this out....
Lisa,
Budesonide is constipating, and a few people seem to be extremely sensitive to corticosteroids and you appear to be one of them. I would suggest that if you want to continue using budesonide, drop the dose down to 3 mg per day, and if that's too much try 3 mg every other day, or every third day, or every fourth day, or stop using it.
During the 20 years that this discussion forum has been in existence, I can remember two or maybe three other members who had the same problem — they were extremely sensitive to corticosteroids and had to either cut the dose way down, or stop using budesonide. I believe I would simply stop using it, because constipation is no better for our enjoyment of life, and our long-term health, than diarrhea.
Tex
Budesonide is constipating, and a few people seem to be extremely sensitive to corticosteroids and you appear to be one of them. I would suggest that if you want to continue using budesonide, drop the dose down to 3 mg per day, and if that's too much try 3 mg every other day, or every third day, or every fourth day, or stop using it.
During the 20 years that this discussion forum has been in existence, I can remember two or maybe three other members who had the same problem — they were extremely sensitive to corticosteroids and had to either cut the dose way down, or stop using budesonide. I believe I would simply stop using it, because constipation is no better for our enjoyment of life, and our long-term health, than diarrhea.
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: SIBO and MC ? Trying to sort this out....
Lisa,
Budesonide is constipating, and a few people seem to be extremely sensitive to corticosteroids. You appear to be one of them. I would suggest that if you want to continue using budesonide, drop the dose down to 3 mg per day, and if that's too much, try 3 mg every other day, or every third day, or every fourth day, or stop using it.
During the 20 years that this discussion forum has been in existence, I can remember two or maybe three other members who had the same problem — they were extremely sensitive to corticosteroids and had to either cut the dose way down, or stop using budesonide. I believe I would simply stop using it, because constipation is no better for our enjoyment of life, and our long-term health, than diarrhea.
Tex
Budesonide is constipating, and a few people seem to be extremely sensitive to corticosteroids. You appear to be one of them. I would suggest that if you want to continue using budesonide, drop the dose down to 3 mg per day, and if that's too much, try 3 mg every other day, or every third day, or every fourth day, or stop using it.
During the 20 years that this discussion forum has been in existence, I can remember two or maybe three other members who had the same problem — they were extremely sensitive to corticosteroids and had to either cut the dose way down, or stop using budesonide. I believe I would simply stop using it, because constipation is no better for our enjoyment of life, and our long-term health, than diarrhea.
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: SIBO and MC ? Trying to sort this out....
Thank you so much Tex, I so appreciate your guidance!
Grateful,
Lisa
Grateful,
Lisa