I thought I’d give you an update and ask for your helpful advice once again.
I was diagnosed with LC in September 2014, have been GF and DF since October 2014, and EF and SF since November 2014 (once I received the Enterolab results on the big 4 offenders and they all came back positive). Budesonide did not help. I started with the elimination diet the day after Christmas and have been on it ever since. That’s what helped me get rid of the WD. My typical diet is:
Breakfast: banana and/or rice cakes (ingredients: brown rice, salt)
Lunch and dinner: lamb/chicken/cod/tuna with rice/potatoes, sometimes avocado, lots of olive oil, some salt/pepper
I have tried adding more vegetables or fruit, but it leads to bloating, sometimes loose bowel movements. So aside from bananas, I usually don’t have any fruits/vegetables. I have also tried cashew butter, I absolutely love the taste of it, but it results in terrible bloating. So I usually leave it away.
My bowel movements are normal if I stay on the diet mentioned above minus fruit/veggies/nut butter. That’s great and I am grateful for it!! Going out, though, is like gambling. I never noticed before how much socializing means eating, whether at friends' houses or in restaurants. My husband and I don’t really go out anymore since my diagnosis, and if we meet friends at a restaurant, I either eat at home beforehand and just order a cup of tea or I bring my own food. Both of which I find quite embarrassing. Some restaurants are really good at cooking according to the chef’s card, but if they use “extra virgin olive oil” (which is more often than not mixed with other cheap vegetable oils such as soybean oil even though that is never declared and the FDA stopped testing olive oils for that reason) I get sick. I have brought in a tiny bottle of the high-quality olive oil I order online and asked the chef to cook with it, which resulted in me not being sick the next day (another embarrassing option since I do not like to attract attention doing that). I have also found that if we are out of town and go to a sushi restaurant I am normally fine if I order Tekka Don (tuna sashimi on cooked rice). If I order Chirashi (different types of fish on cooked rice), I frequently get sick the next day. Sometimes I wonder if it is the kind of fish or if it is cross contamination with soy. I try to avoid eating out if I can, but sometimes it is not feasible, especially if traveling (dropping off kids at college a few states away, for example). I can definitely tell that the slightest change in diet or cross contamination will set me off resulting in nausea, diarrhea, abdominal pains, and worsening of the rash.
Despite having the bowel movements somewhat under control I still have other issues (that I did not have before LC). My naturopathic physician thinks they are related to the LC, my regular doctors don’t think so (but they have no idea what causes them). I continue to have intermittent issues with my right leg: pain in the right thigh, feeling of a sock on my foot, different temperature perception on the foot. The tingling has gotten better and I believe it is due to the B6/folate/B12 vitamins (Metanx equivalent) that I am taking. I also have intermittent pain in joints (right now the top of my hands), sometimes weakness/slight trembling in the hands, and I still have that rash on my right cheek, it comes and goes, and I do believe it is connected to what I eat. I still have pain in my lower/mid back (slightly higher than my belly button), and I think it is bothering me most when I have the bloating issue. I started with acupuncture in June of this year and I find that it helps with the leg symptoms. I found a great naturopathic physician in Pittsburgh who is specialized in Chinese Medicine and acupuncture. Here is the summary of what she initially recommended: continue with vitamin D3 but switch to lingual version once I run out of the tablets, continue with B vitamins, continue with Magnesium spray, but also rub castor oil on stomach at night (anti-inflammatory, remove toxins), take selenium and some homeopathic drops. She originally also wanted me to take fish oil, but the one she had contained soy, so I declined. She recommended testing for SIBO and I agreed to do that. I had to measure breath at baseline and every 20 minutes after taking lactulose for 3 hours total. They measured hydrogen and methane. It should not be higher than 20 ppm and mine went up to 88 ppm. So basically I tested positive for SIBO. According to my naturopathic physician, the treatment options are herbal antibiotics, regular antibiotics (she is against those, so am I), or elemental diet. She recommended a 6-week course of herbal antibiotics, to be started with FC-Cidal for two weeks, then Dysbiocide for two weeks, and I do not remember the last one for two weeks. She attended the second SIBO symposium and was surprised that they did not mention diet such as the specific carbohydrate diet as treatment. She advised me to continue with my colitis diet mentioned above and not worry about a SIBO diet for now.
She was also wondering if I had any other intolerances to foods I was currently eating. She suggested an Immunolabs test, but I am not sure how valid a blood test is for MC. I therefore decided on the 11 antigenic foods test of Enterolab. Before doing the tests I called Enterolab and asked them if I needed to have eaten those foods recently. I know that gluten can be detected up to 2 years later but I thought the other ones might not. They said that if I had eaten them within 6 months-2 years, they should still show up. I have kept a detailed symptom/diet diary since October of last year and based on that I know that I have not eaten oats or walnuts since October. I had a small amount of corn one time only in April. I have eaten the other foods, although some of them very rarely (such as almonds).
Here are the results I received:
Food to which there was no significant immunological reactivity:
Rice
White potato
Food to which there was some immunological reactivity (1+):
Corn
Oat
Chicken
Tuna
Beef
Pork
Cashew
Walnut
Almond
Food to which there was moderate immunological reactivity (2+):
None
Food to which there was significant and/or the most immunological reactivity (3+):
None
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Corn
Grain toward which you displayed intermediate immunologic reactivity: Oat
Meats:
Meat toward which you displayed the most immunologic reactivity: Chicken
Meat toward which you were next most immunologically reactive: Tuna
Meat toward which you displayed intermediate immunologic reactivity: Beef
Meat toward which you displayed the least immunologic reactivity: Pork
Nuts:
Nut toward which you displayed the most immunologic reactivity: Cashew
Nut toward which you displayed intermediate immunologic reactivity: Walnut
Nut toward which you displayed the least immunologic reactivity: Almond
I was very happy with the results, especially since rice and white potatoes show up as no significant immunological reactivity. And also because the other ones are only a 1+. I thought that since I did not have any 2+ and 3+ foods, I could just rotate the 1+ foods. But based on the other post of Linda I now question that. If I have rice and white potato every day, will they eventually move up to 1+ or more? And if I have the 1+ foods regularly, will they become 2+ and 3+ foods over time? Also, if I make homemade chicken broth, is that bad, since I tested 1+ for chicken?
And regarding SIBO: how common is that with MC? What comes first? SIBO or MC? And did any of you have any success treating SIBO? From what I have read it frequently comes back…. Does getting MC under control also help to get SIBO under control?
My last question is regarding hair. I had my regular hair cut appointment last week and my hairdresser told me that I looked thin (yes, I lost 25 pounds since fall) and that my hair looked like the hair of bariatric surgery patients she has. Obviously, malabsorption of nutrients would apply to both…..She recommended a different haircut to make the thin hair look better and to bring out the waves/curls of my hair (it is naturally every so slightly wavy). She used a mousse on it, which actually did make it look more curly, but when I looked at the product, it contained soy as one of the ingredients. Does hair absorb ingredients in mousse? Or do we just absorb shampoo through the skin on the head?
Thank you all so much for your help and advice,
Love, Patricia
SIBO - Enterolab results - Hair
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Patricia,
The most important result for those 11 antigenic foods is the overall test score. Was it above 10? That number tells you how significant all of the other test results are.
I always eat the same foods every day.
SIBO is caused by poor digestion. I have a hunch that as you suggest, all of us have SIBO while we are reacting (due to our poor digestion, which leaves plenty of half-digested for bacteria to ferment). IMO, after we are in remission, and all of our inflammation damage heals, the SIBO will take care of itself. IOW, it will fade away.
Absorbing soy in hair shouldn't cause any problems. It's soy on skin/scalp that can cause problems for some of us (but not necessarily everyone who is sensitive to soy).
Thank you for the update. And I hope that some of this is helpful.
Love,
Tex
The most important result for those 11 antigenic foods is the overall test score. Was it above 10? That number tells you how significant all of the other test results are.
I always eat the same foods every day.
SIBO is caused by poor digestion. I have a hunch that as you suggest, all of us have SIBO while we are reacting (due to our poor digestion, which leaves plenty of half-digested for bacteria to ferment). IMO, after we are in remission, and all of our inflammation damage heals, the SIBO will take care of itself. IOW, it will fade away.
Absorbing soy in hair shouldn't cause any problems. It's soy on skin/scalp that can cause problems for some of us (but not necessarily everyone who is sensitive to soy).
Thank you for the update. And I hope that some of this is helpful.
Love,
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.
Thank you so much, Tex. As always, your input is very helpful!!!
I checked the Enterolab results and here is what it said:
Mean Value 11 Antigenic Foods: 12 Units (Normal Range is less than 10 Units)
So if it says 12 units, does that mean that it's a minor issue since 12 is not much higher than 10? Or is that wishful thinking? Should I rotate those #1 foods or try to avoid them as much as possible?
Love, Patricia
I checked the Enterolab results and here is what it said:
Mean Value 11 Antigenic Foods: 12 Units (Normal Range is less than 10 Units)
So if it says 12 units, does that mean that it's a minor issue since 12 is not much higher than 10? Or is that wishful thinking? Should I rotate those #1 foods or try to avoid them as much as possible?
Love, Patricia
Yes, the lower that score, the less likely those foods are to be a serious problem. Of course any positive score (above 10) means that the potential for problems is still there, but it's less likely that any or all of the foods will cause the same level of problems that would occur if the score were much higher.
A score less that 10 would indicate that none of the foods would be likely to cause a significant problem.
Rotating 1+ foods should be a reasonable possibility, especially if you are doing well. If you were still in a serious flare, then it would be a good idea to avoid them. Of course if you decide to try to add them to your diet, even in a rotation pattern, keep an eye on them, in case symptoms should begin to develop.
Love,
Tex
A score less that 10 would indicate that none of the foods would be likely to cause a significant problem.
Rotating 1+ foods should be a reasonable possibility, especially if you are doing well. If you were still in a serious flare, then it would be a good idea to avoid them. Of course if you decide to try to add them to your diet, even in a rotation pattern, keep an eye on them, in case symptoms should begin to develop.
Love,
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.
-
ObsessedMrFixit
- Adélie Penguin
- Posts: 53
- Joined: Wed Dec 05, 2012 9:45 am
Hi there,
I'm a long-time member, but been away for a while. Something caused me to have a look at the MC forum here, and I found your post. Your symptoms and mine have some eyebrow-raising similarities, so I thought I'd offer my $0.02. That may be all its worth, but here goes anyway...
Lots of folks are going to disagree with me on this, but I'm gonna say it anyway: I'm not convinced that MC (LC, in particular) is a disease in and of itself. I'm thinking its a symptom of some other problem. Lymphocytes are part of inflammation, which is the body's immune system kicking in. Seem to me that would be in response to something....like leaky gut (low zonulin, low vinculin, or something that causes the ephithelial barrier to lose its integrity). OK, that's my own theory, substantiated by nothing other than my own opinion. Enough soap box.
Whether or not SIBO comes before MC or t'other way round, your SIBO can be treated. I was at the SIBO symposium this past June. Like you, I am against pharmaceutical antibiotics in general, unless they are strongly indicated. That being said, I have nothing against Xifaxan (the antibiotic used to treat SIBO). The safety studies on it are vast. A patient can be treated six times, and it does not cause antibiotic resistance, does not noticeably affect the large bowel flora (it is inactivated in a normal person in their large bowel, once the bilt salts are re-absorbed). I'm not trying to convince you to switch to Xifaxan. Just want you to have the information. Herbal "antibiotics" are fine, as long as you're willing to spend the time to let them work. At least your ND gave you the ones that were studied for SIBO (lots of them use their own favorite "equivalent"). In case your ND didn't mention it, a score of 88 on the SIBO test means you probably need somewhere between 3 and 5 treatments to kill the bad guys in your gut. The SIBO symposium guidance was 4 weeks of herbals is a treatment. So I'm not sure why your ND said 6, but it's not a huge point to debate. All other things being equal, you should expect to spend 3-5 months on the herbals (Dysbiocide and FC-Cidal).
The known cause of SIBO is food poisoning. That doesn't mean its the only cause. But its a dominant one (60% according to the research). If you had food poisoning before, its possible that your SIBO stems from it. The cause is the toxin produced by the bad bugs. Your body forms anti-bodies to it that bear enough resemblance to some of the cells in your gut that the antibodies attack the toxin and also your own gut. Hence, its characterized as an auto-immune response. The part that really sucks is that your body will take a loooong time (it can take 5-15 years, depending on the severity of the infection) to clear itself of those antibodies. And that's assuming you don't get food poisoning again. From my own experience, i'm not convinced that food poisoning is the only cause of my troubles. But it certainly is one of the causes.
From my own experience, once your SIBO is sufficiently resolved, you should be able to expand your diet. I have had MC (LC, specifically) for 3 years (or maybe its four....its been a long time IMHO). I was able to add rice to my diet 6 months ago, and navy beans about a year ago, I think it was. Also sugar.....man, that was super nice to add. Also apples, pears, peaches....and other fruit. My SIBO test result was over 100. You might be tempted to think that, since yours is lower, that you should be able to have more foods than I. Not true. All other things being equal, you will not be able to noticeably add foods until your test result is in the 30 or 20 range (depends on exactly what is overgrown in your gut).
Your observations about socializing being linked to food match my own. I feel very socially isolated because of this stupid disease. There is an app (and website) that may help you choose restaurants. Its called Allergy Eats. I had a quick look at Pittsburg, and saw some restaurants that, at the least, sounded promising, so it might be worth a try. In my town, there are actually three restaurants I can go to. Even with "so many", the family is tired of them. So we mostly cook at home.
OK, that's probably enough for a first post/reply. I hope my experience can help you. I'll gladly answer any questions you have. I am curious if your SIBO test result showed any methane? I'd guess no, but its always worth asking. My only disclaimer is that I'm not a doctor. Sometimes I use words that doctors use. It's only because I've read so many medical research papers. But I'm not a doctor, so please add your own judgement and grain of salt to everything I say. :-)
I'm a long-time member, but been away for a while. Something caused me to have a look at the MC forum here, and I found your post. Your symptoms and mine have some eyebrow-raising similarities, so I thought I'd offer my $0.02. That may be all its worth, but here goes anyway...
Lots of folks are going to disagree with me on this, but I'm gonna say it anyway: I'm not convinced that MC (LC, in particular) is a disease in and of itself. I'm thinking its a symptom of some other problem. Lymphocytes are part of inflammation, which is the body's immune system kicking in. Seem to me that would be in response to something....like leaky gut (low zonulin, low vinculin, or something that causes the ephithelial barrier to lose its integrity). OK, that's my own theory, substantiated by nothing other than my own opinion. Enough soap box.
Whether or not SIBO comes before MC or t'other way round, your SIBO can be treated. I was at the SIBO symposium this past June. Like you, I am against pharmaceutical antibiotics in general, unless they are strongly indicated. That being said, I have nothing against Xifaxan (the antibiotic used to treat SIBO). The safety studies on it are vast. A patient can be treated six times, and it does not cause antibiotic resistance, does not noticeably affect the large bowel flora (it is inactivated in a normal person in their large bowel, once the bilt salts are re-absorbed). I'm not trying to convince you to switch to Xifaxan. Just want you to have the information. Herbal "antibiotics" are fine, as long as you're willing to spend the time to let them work. At least your ND gave you the ones that were studied for SIBO (lots of them use their own favorite "equivalent"). In case your ND didn't mention it, a score of 88 on the SIBO test means you probably need somewhere between 3 and 5 treatments to kill the bad guys in your gut. The SIBO symposium guidance was 4 weeks of herbals is a treatment. So I'm not sure why your ND said 6, but it's not a huge point to debate. All other things being equal, you should expect to spend 3-5 months on the herbals (Dysbiocide and FC-Cidal).
The known cause of SIBO is food poisoning. That doesn't mean its the only cause. But its a dominant one (60% according to the research). If you had food poisoning before, its possible that your SIBO stems from it. The cause is the toxin produced by the bad bugs. Your body forms anti-bodies to it that bear enough resemblance to some of the cells in your gut that the antibodies attack the toxin and also your own gut. Hence, its characterized as an auto-immune response. The part that really sucks is that your body will take a loooong time (it can take 5-15 years, depending on the severity of the infection) to clear itself of those antibodies. And that's assuming you don't get food poisoning again. From my own experience, i'm not convinced that food poisoning is the only cause of my troubles. But it certainly is one of the causes.
From my own experience, once your SIBO is sufficiently resolved, you should be able to expand your diet. I have had MC (LC, specifically) for 3 years (or maybe its four....its been a long time IMHO). I was able to add rice to my diet 6 months ago, and navy beans about a year ago, I think it was. Also sugar.....man, that was super nice to add. Also apples, pears, peaches....and other fruit. My SIBO test result was over 100. You might be tempted to think that, since yours is lower, that you should be able to have more foods than I. Not true. All other things being equal, you will not be able to noticeably add foods until your test result is in the 30 or 20 range (depends on exactly what is overgrown in your gut).
Your observations about socializing being linked to food match my own. I feel very socially isolated because of this stupid disease. There is an app (and website) that may help you choose restaurants. Its called Allergy Eats. I had a quick look at Pittsburg, and saw some restaurants that, at the least, sounded promising, so it might be worth a try. In my town, there are actually three restaurants I can go to. Even with "so many", the family is tired of them. So we mostly cook at home.
OK, that's probably enough for a first post/reply. I hope my experience can help you. I'll gladly answer any questions you have. I am curious if your SIBO test result showed any methane? I'd guess no, but its always worth asking. My only disclaimer is that I'm not a doctor. Sometimes I use words that doctors use. It's only because I've read so many medical research papers. But I'm not a doctor, so please add your own judgement and grain of salt to everything I say. :-)
Thank you so much for your fascinating post!!!
I did have either food poisoning or the stomach flu in August 2013. It was not the first time I had food poisoning, but it was really bad. My naturopathic physician asked me during my first visit whether I ever had food poisoning and if so, when. As soon as I gave her the date, she smiled knowingly. She thought it was really interesting that I had it in August 2013, and in spring 2014 all the different gastrointestinal symptoms popped up.
Regarding the SIBO test and the question about methane, here are my results (I also have the results for H2, CH4, H2+CH4 for every 20 minutes of the test, if you are interested):
Result Flag (Normal)
Combined baseline total 2 (≤ 20 ppm)
Greatest H2 increase within first 120 mins 83 H (≤ 20 ppm)
Greatest H2 level within first 120 mins 84 H (≤ 20 ppm)
Greatest CH4 increase within first 120 mins 5 (≤ 12 ppm)
Greatest CH4 level within first 120 mins 6 (≤ 12 ppm)
Greatest combined H2 and CH4 increase within first 120 mins 88 H (≤ 15 ppm)
Methane Producer 6 H (≤ 2 ppm)
Interpretation and notes
Positive - Elevated hydrogen and combined hydrogen and methane
Based on this analysis, bacterial overgrowth of the small intestine is suspected. Levels of hydrogen greater than 20 ppm within the first 120 minutes are indicative of bacterial overgrowth. In addition, combined levels of hydrogen and methane greater than 15 ppm within the first 120 minutes is indicative of bacterial overgrowth.
Methane producer
Based on this analysis, irritable bowel syndrome - constipation type or methanogen-induced constipation is suspected. Methane levels greater than 2 ppm are indicative of IBS-C or methanogen-induced constipation.
I'd be curious to know what symptoms you had that are similar to mine, whether you think they were due to SIBO or LC, whether they resolved in the meantime, how long it took for them to resolve, and what you think helped you the most.
I honestly find it very comforting when other people mention the same symptoms. Not that I am happy to have other people suffer with me, but according to my PCP "none of my symptoms make sense". She either thinks I am making them up to make her job harder or she mentions things like "well, maybe it is multiple sclerosis or some connective tissue disease that can be confusing in the beginning until it gets worse and then it becomes clear what it is". Not helpful at all!
Did you take Xifaxan? And if so, were you able to get rid of SIBO? How many courses of treatments did you have?
Thank you so much!!!
Patricia
I did have either food poisoning or the stomach flu in August 2013. It was not the first time I had food poisoning, but it was really bad. My naturopathic physician asked me during my first visit whether I ever had food poisoning and if so, when. As soon as I gave her the date, she smiled knowingly. She thought it was really interesting that I had it in August 2013, and in spring 2014 all the different gastrointestinal symptoms popped up.
Regarding the SIBO test and the question about methane, here are my results (I also have the results for H2, CH4, H2+CH4 for every 20 minutes of the test, if you are interested):
Result Flag (Normal)
Combined baseline total 2 (≤ 20 ppm)
Greatest H2 increase within first 120 mins 83 H (≤ 20 ppm)
Greatest H2 level within first 120 mins 84 H (≤ 20 ppm)
Greatest CH4 increase within first 120 mins 5 (≤ 12 ppm)
Greatest CH4 level within first 120 mins 6 (≤ 12 ppm)
Greatest combined H2 and CH4 increase within first 120 mins 88 H (≤ 15 ppm)
Methane Producer 6 H (≤ 2 ppm)
Interpretation and notes
Positive - Elevated hydrogen and combined hydrogen and methane
Based on this analysis, bacterial overgrowth of the small intestine is suspected. Levels of hydrogen greater than 20 ppm within the first 120 minutes are indicative of bacterial overgrowth. In addition, combined levels of hydrogen and methane greater than 15 ppm within the first 120 minutes is indicative of bacterial overgrowth.
Methane producer
Based on this analysis, irritable bowel syndrome - constipation type or methanogen-induced constipation is suspected. Methane levels greater than 2 ppm are indicative of IBS-C or methanogen-induced constipation.
I'd be curious to know what symptoms you had that are similar to mine, whether you think they were due to SIBO or LC, whether they resolved in the meantime, how long it took for them to resolve, and what you think helped you the most.
I honestly find it very comforting when other people mention the same symptoms. Not that I am happy to have other people suffer with me, but according to my PCP "none of my symptoms make sense". She either thinks I am making them up to make her job harder or she mentions things like "well, maybe it is multiple sclerosis or some connective tissue disease that can be confusing in the beginning until it gets worse and then it becomes clear what it is". Not helpful at all!
Did you take Xifaxan? And if so, were you able to get rid of SIBO? How many courses of treatments did you have?
Thank you so much!!!
Patricia
Patricia,
I'm not saying that you might not have SIBO, because many of us have it as a side effect of MC. But I can tell you from past experience of other members of this board that Xifaxan (rifaximin) works for SIBO the same way that budesonide works for MC. Some members have tried it multiple times, but always with the same effect — it seems to help for a few weeks, and then the symptoms return. Why does this happen? Because the gut bacteria balance is determined by many things, but there are 3 factors that have by far the biggest effect, and they work together to determine our gut bacteria balance at any given time. The factors are antibiotics, diet, and environment (environment determines the bacteria available to repopulate the gut whenever either of the other factors are changed).
Homeostasis is dependent on diet, and in the long run, diet determines our gut bacterial balance. But when antibiotics are used, this alters the bacteria balance (among various species), and opens the door for other species to invade (from the species available in the environment) and/or thrive. And after a while, homeostasis will return, and the bacterial balance will once again settle down with a demographic distribution dependent on diet.
Similar to treating MC with budesonide, an antibiotic can provide temporary relief. But unless the cause of the problem is corrected (the diet), the symptoms will eventually return. In the long run, our gut bacterial balance is solely dependent on our diet, and every time we change our diet (or use an antibiotic) we force a change in our gut bacterial balance. But after a few hundred generations of bacteria have evolved, the bacterial balance will once again settle down in a composition that is ideally suited to the particular diet in use at the time.
Yes, most of us have SIBO while we are reacting (because we can't properly digest food). But when our ability to digest food returns (as our gut heals), the SIBO will fade away, because the bacteria causing the SIBO problems cannot survive when digestion is good. Trying to treat MC by treating SIBO is similar to trying to treat MC with an anti-inflammatory medication — it doesn't address the cause of the problem, so it's only a temporary solution. Until our digestive system is properly digesting the food we eat, SIBO will continue to be a recurrent problem. If our digestive system is compleytely digesting the food we eat, the SIBO will fade away, because the bacteria that cause the problem cannot survive without poor digestion.
I hope that some of this is helpful.
Love,
Tex
I'm not saying that you might not have SIBO, because many of us have it as a side effect of MC. But I can tell you from past experience of other members of this board that Xifaxan (rifaximin) works for SIBO the same way that budesonide works for MC. Some members have tried it multiple times, but always with the same effect — it seems to help for a few weeks, and then the symptoms return. Why does this happen? Because the gut bacteria balance is determined by many things, but there are 3 factors that have by far the biggest effect, and they work together to determine our gut bacteria balance at any given time. The factors are antibiotics, diet, and environment (environment determines the bacteria available to repopulate the gut whenever either of the other factors are changed).
Homeostasis is dependent on diet, and in the long run, diet determines our gut bacterial balance. But when antibiotics are used, this alters the bacteria balance (among various species), and opens the door for other species to invade (from the species available in the environment) and/or thrive. And after a while, homeostasis will return, and the bacterial balance will once again settle down with a demographic distribution dependent on diet.
Similar to treating MC with budesonide, an antibiotic can provide temporary relief. But unless the cause of the problem is corrected (the diet), the symptoms will eventually return. In the long run, our gut bacterial balance is solely dependent on our diet, and every time we change our diet (or use an antibiotic) we force a change in our gut bacterial balance. But after a few hundred generations of bacteria have evolved, the bacterial balance will once again settle down in a composition that is ideally suited to the particular diet in use at the time.
Yes, most of us have SIBO while we are reacting (because we can't properly digest food). But when our ability to digest food returns (as our gut heals), the SIBO will fade away, because the bacteria causing the SIBO problems cannot survive when digestion is good. Trying to treat MC by treating SIBO is similar to trying to treat MC with an anti-inflammatory medication — it doesn't address the cause of the problem, so it's only a temporary solution. Until our digestive system is properly digesting the food we eat, SIBO will continue to be a recurrent problem. If our digestive system is compleytely digesting the food we eat, the SIBO will fade away, because the bacteria that cause the problem cannot survive without poor digestion.
I hope that some of this is helpful.
Love,
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.
Believe it or not, you and I are in complete agreement on that point. I covered that argument in detail in pages 110—117 of my book. The area of disagreement lies in exactly which problem/disease MC is a symptom of. IMO, there are many, many issues involved with MC, and many of them are blamed for causing MC, when actually they are only co-symptoms of MC. But after weighing all the facts, and looking at all the combined experiences of the members of this discussion board (over a period of over 10 years), it appears to me that SIBO is only one of many satellite issues associated with MC. Why? because despite the fact that many/most of us have SIBO while we are reacting, the SIBO will resolve automatically (without targeted intervention), when our MC symptoms are resolved by eliminating the inflammation that causes MC in the first place.ObsessedMrFixit wrote:Lots of folks are going to disagree with me on this, but I'm gonna say it anyway: I'm not convinced that MC (LC, in particular) is a disease in and of itself. I'm thinking its a symptom of some other problem.
So what will not resolve automatically without intervention? The inflammation. And that's because the inflammation is caused by food sensitivities (triggered by gluten sensitivity). The SIBO bacteria are only there because like all bacteria, they are opportunistic, and when they find an opportunity, they take advantage of it. That opportunity is poorly-digested or partially-digested food, which occurs as a consequence of the inflammation that causes the clinical symptoms associated with MC.
IOW, I maintain that both MC and celiac disease are symptoms of gluten sensitivity. That said, I certainly respect your opinion enough to leave the door open to further discussion, because there are no research data to prove what either or us are suggesting (nor are there any data available to prove that either of us is wrong). But if you consider the evidence I presented above (that SIBO resolves [for the vast majority of us] as the inflammation caused by food sensitivities is resolved), and the observation that the inflammation can only be resolved by eliminating the inflammatory foods from the diet, that evidence at least appears to be sufficiently substantial to suggest that MC is a symptom of food sensitivities, particularly gluten sensitivity (because gluten sensitivity causes increased intestinal permeability, which opens the door to other food sensitivities).
But regardless of whether either of us is right or wrong, I'm not holding my breath while waiting for the medical community to prove any of what we have suggested.
SIBO is definitely a significant issue for many of us. Looking back, I'm convinced that it affected me for many months back when I was reacting. And while I agree that rifaxamin is a relatively safe antibiotic (as if any antibiotic is actually "safe"), in the experience of various other members here who have tried it (multiple times in some cases), it is only a temporary "fix", and no one else has reported that it actually resolved their issues for longer than just a few weeks. It's promoted as a "wonder drug", but so far, I haven't seen any evidence that it has lived up to that claim. I suspect that if it were used continuously as a maintenance treatment, it might have the effect claimed. But is that safe?
We have at least 1 member who tried using Ciprofloxacin that way (because Cipro brings remission of symptoms for virtually all of us who take it) but the side effects eventually caught up with her, and now she has debilitating physical and neurological issues caused by the Cipro.
Thank you for sharing your insight. As closely associated with MC as SIBO appears to be, we all need to know more about it. And the available medical research literature on the topic leaves a lot to be desired, especially as related to MC.
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.
Did you know that all patients with fibromyalgia seem to have SIBO?
http://ard.bmj.com/content/63/4/450.full
How many of the patients in Sweden with fibromyalgia will be treated for SIBO? Answer: Probably no one.
Jonas
http://ard.bmj.com/content/63/4/450.full
How many of the patients in Sweden with fibromyalgia will be treated for SIBO? Answer: Probably no one.
Jonas
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jonas
I have fibromyalgia and do not have SIBO (I have done tests for SIBO)
I think people with fibromyalgia do have gut inflammation / leaky gut and this impacts the intensity of the fibromyalgia
Also - most of the symptoms of fibromyalgia can be reduced / near eliminated once digestion is improved and key nutrient deficiencies are fixed
I have fibromyalgia and do not have SIBO (I have done tests for SIBO)
I think people with fibromyalgia do have gut inflammation / leaky gut and this impacts the intensity of the fibromyalgia
Also - most of the symptoms of fibromyalgia can be reduced / near eliminated once digestion is improved and key nutrient deficiencies are fixed
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Jonas,Jonas wrote:Did you know that all patients with fibromyalgia seem to have SIBO?
http://ard.bmj.com/content/63/4/450.full
How many of the patients in Sweden with fibromyalgia will be treated for SIBO? Answer: Probably no one.
Jonas
Your link doesn't work. I would like to print it out, since my neighbour (81) has awful pains from fibromyalgia.
Hope the site is just temporarily out of order.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Jonas,
Fibromyalgia is a commonly-misdiagnosed disease. Did you know that magnesium deficiency is often misdiagnosed as fibromyalgia? I've forgotten where I read that, so I can't list a reference, but I think it was in one of Chris Kressor's blogs.
Tex
Fibromyalgia is a commonly-misdiagnosed disease. Did you know that magnesium deficiency is often misdiagnosed as fibromyalgia? I've forgotten where I read that, so I can't list a reference, but I think it was in one of Chris Kressor's blogs.
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.
Gabes,
What works best for you in controlling your fibromyalgia symptoms, is it magnesium? I know that relaxing and meditation are also important.
Basically the calmer you are the better digestion you will have, and the more nutrients you will get.
Is it not true that most of our symptoms are due to nutrient deficiency? And we get nutrient deficient after we have had an active MC for some time.
And as long as the MC is active we will probably be nutrient deficient.
And that’s probably why nutrient dense diet, like the paleo diet work so well for some of us. Especially those with an autoimmune disease (gut problems)
Jonas
What works best for you in controlling your fibromyalgia symptoms, is it magnesium? I know that relaxing and meditation are also important.
Basically the calmer you are the better digestion you will have, and the more nutrients you will get.
Is it not true that most of our symptoms are due to nutrient deficiency? And we get nutrient deficient after we have had an active MC for some time.
And as long as the MC is active we will probably be nutrient deficient.
And that’s probably why nutrient dense diet, like the paleo diet work so well for some of us. Especially those with an autoimmune disease (gut problems)
Jonas