MICROSCOPIC COLITIS SUPPORT

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

Hi Joan,

Welcome to the group. I'll try to answer your questions as best I can.

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?

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: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?

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.

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

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'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

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!

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