Introduction and SIBO Causes
Hello, everyone, this is Josh from SIBO survivor and tonight I am joined by Dr. Leonard Weinstock. I’m really fortunate to be able to sit down and talk to talk to Dr. Weinstock. A little bio about him, so Dr. Weinstock received his medical training in Rochester, New York and completed a gastroenterology fellowship at Washington University in St. Louis. He is board-certified in internal medicine and gastroenterology. He has a clinical teaching appointment as an associate professor of clinical medicine and surgery at the Washington University School of Medicine. Dr. Weinstock’s lectures and research have been presented at national and international conferences on diseases of the esophagus, stomach, small intestine and colon and he is actively researching the connection between the gut and SIBO with several other medical syndromes and conditions. I’m excited to just sit down and talk with him about underlying causes in SIBO and maybe what other coexisting conditions someone should be familiar with if they’re dealing with these issues. So what’s going on Dr. Weinstock? Happy to have you.
Dr. Weinstock (1:30)
Thank you so much and I heard you’re in Thailand.
Yeah, so like I said in this interview I want to dive into the underlying causes and associated diseases you’ve seen in SIBO because I think it’s important for people to remember that SIBO is a secondary effect from another malfunction in the body so I think first can you kind of just give the listeners an overview of the most common underlying causes that they should at least be aware of and maybe even bring up to their doctor right about why this could be occurring?
Dr. Weinstock (2:10)
Okay, very good. Well let’s step back one second and say you could pick up a GI textbook and you could find the chapter on small intestinal bacterial overgrowth syndromes and you’ll find all sorts of things that I’m going to address, but the doctors who actually studied and read that chapter know that irritable bowel syndrome is not included in that chapter. So basically since 2000 that’s where the changes have occurred where small intestinal bacterial growth has been shown to have a big role in irritable bowel syndrome but the people who are very black and white in the industry of medicine, even though Xifaxan was approved in 2015 for treatment of irritable bowel just don’t get it. So when you say bring this information to your doctor you’re gonna have to realize that if they’re old-school then they may not get it. That’s a problem, but not all with SIBO and yet probably for diarrhea 60% is due to small intestinal bacterial overgrowth, okay? So what are the causes of the small intestinal bacterial growth in general? And what’s most common in irritable bowel? Well, let’s just jump to the irritable bowel for a second that 60% of patients with IBS-D have the auto antibody anti-vinculin. You’ve discussed that already?
Yeah, and on the about SIBO page I kind of go into more detail about that so you know it has to do with the autoimmune issue and when someone gets food poisoning.
Dr. Weinstock (4:04)
Yeah, that’s really critical and big and in the study where Xifaxan was approved, 2,600 patients in that study had blood testing and 60% had a positive anti-vinculin test. So large and this is damaging the migrating motor complex which allows bacteria to increase in population. So going back to your question there are basically four categories of conditions that lead to SIBO. Number one, malabsorption. So you’d include pancreatitis and celiac disease in that. Number two, anatomical disorders. So, post gastrectomy or blind loops or jejunal diverticulitis or Ehlers-Danlos syndrome or droopy loopy loops of the small bowel. Then number three would be immune dysfunction, like CLL, IGA deficiency and then number four would be motility disorders due to nerve and muscle disorders. So you have four things. Can’t absorb the nutrients, so the bacteria do. You have an anatomical condition that allows for a swamp to occur where the bacteria grow. Number three, you don’t have the immune defenses and bacteria clinging to the small bowel and stay there and then before you’ve got a disorder of the motility so you don’t sweep it out.
Diagnostics of SIBO Cause
Gotcha, gotcha. So I mean I guess let’s say someone is having these issues and they want to kind of check for these underlying causes is there any tests or is there anything that they can talk to their doctor about to say like hey you know one of those causes I think maybe possibly could be an issue what does someone do to kind of get into that, figure it out?
Dr. Weinstock (6:12)
So let’s start from the top, so malabsorption, get yourself tested for celiac disease or even try a gluten-free diet in case you’re the wheat-sensitive type. Number two, in that same box we can test for pancreatic insufficiency important with aging there’s atrophy of pancreas or if you have a lot of hepatitis that can solve. So then you move on to the next box that’s anatomical so you think of anatomical conditions, if you’ve had surgeries and you might have adhesion or you’ve had surgery there might be a blind loop or you know just get a small bowel follow through to exclude that. Number three, get a blood count to think about immune disturbances, maybe get IGI immune globulin panel and number four that gets much more complicated but the top-notch thing to do is to get, and this can be done first, the IBS check test which looks for the anti-vinculin antibody.
Cool. So is that IBS check test available now? Cause I know in the past it went off and on.
Dr. Weinstock (7:40)
Well, it was on, then it went off, and now it’s back on at a commonwealth.
Ya, so that’s that’s a recommended test to see if someone basically if they’re SIBO was from food poisoning right and having that autoimmune motility issue right? Okay, gotcha. So awesome so those are all the things that someone can be aware of and talk to their doctor about to see what maybe is causing this so I guess next let’s talk a little bit about common coexisting diseases or syndromes that you see with SIBO so for example you know acne, restless legs, fibromyalgia, which of these conditions have you seen a lot alongside SIBO?
Dr. Weinstock (8:30)
Oh absolutely, so you know I like the Venn diagram I don’t know if you’ve ever seen the Venn diagram but you start with a disease like this and then you start overlapping the other conditions that are associated with it and irritable bowel is one such thing and what gets me excited are in fact these extraintestinal manifestations which can be caused by a number of different things but what I see is fatigue, muscle pain, possibly fibromyalgia, which is a wastebasket term, because probably there’s no real fibromyalgia, it’s certain disease states such as mast cell activation that triggers a number. Interstitial cystitis, chronic prostatitis, restless leg syndrome, rosacea. We don’t know enough studies about acne, but a lot of people have bad skin in a variety of ways. Eczema for instance. So those would be the top ones that come to mind when I think about conditions that are associated with it and then, of course, you’ve got psychological factors, anxiety and depression but as opposed to most Gastroenterologists who think well that’s what causes irritable bowel I think it’s vice-versa.
Coexisting Conditions with SIBO
Cool, yeah, so that leads me to my next question, right, when someone has one of these coexisting conditions does it usually happen because of the bacterial overgrowth or the IBS or could it be that coexisting condition that’s causing the SIBO, right, like it kind of gets kind of complicated right?
Dr. Weinstock (10:20)
Well, I think, and I’m doing research on this, that mast cell activation syndrome damages the autonomic nervous system and that causes SIBO and then it also causes muscle inflammation and chronic fatigue and the host of symptoms.
Yeah, so basically what you’re saying is a lot of these coexisting conditions could potentially be causing SIBO as well right?
Dr. Weinstock (10:58)
So you’re right, you gotta look at the venndiagram, at what’s causing what. I honestly think in light of the frequency of mast cell activation that it’s underlying a lot of patients but let’s just take you know 60% of the IBS, SIBO out of that pie and call it what it is, post-infectious irritable bowel with autoimmune dysfunction.
Yeah, exactly so basically right now we pretty much know that 60% of IBS is SIBO with that autoimmune from food poisoning is that correct? Okay and then the next 40% is basically could be due to some of these underlying causes potentially, right?
Dr. Weinstock (11:46)
Right so some of the SIBO, some could be inflammatory IBS, so even from a post infectious state you may not have SIBO but you may have inflammation causing visceral hypersensitivity and that’s where my work with LDN comes in because there’s some patients who just don’t get better with anything and they are finding relief by reducing inflammation.
Interesting, really really cool so what’s kind of the best approach to treating someone who maybe has coexisting conditions, is it something where you kind of try and investigate that and see if that may be something that you work on first before doing anything you know like antibiotics or anything like that, is that, how do you kind of process that?
Dr. Weinstock (12:42)
Yeah, well I think a thorough history is critical. So if you have a strong history and then you’re picking up signs of histamine release with hives, itching, rash, itchy eyes, runny nose and then you talk about fatigue, muscle pain, nausea, you know then you’re building a story that makes you worry about mast cell activation. See, you can’t just treat the SIBO you have to treat the mast cell activation with respect to the anti-vinculin. Well, we don’t have a cure for that at this point. I think we have treatments and we have treatments for motility associated with it, but again it’s more than just the antibiotic. You have to treat the chicken and the egg problem and help out heal the gut lining and improve the motility.
SIBO and Motility
Yeah, I think that’s really important just because you know I guess a lot of people out there who just hear the term SIBO right they just think that they need to work on only the bacterial issue but it’s important to remember that it’s caused by something else in that the case of 60% of IBS it’s the autoimmune anti-vinculin so the nerves aren’t functioning correctly, right, so there’s a motility issue so that’s a really important piece that people need to get support on right?
Dr. Weinstock (14:16)
Right, yeah. And if you look under the microscope the cells that are the nerve cells actually go away so you lose that but some people get over this I mean it’s probably 50% of people who get over post-infectious irritable bowel syndrome that autoimmune antibodies dissipate for whatever reason in time and then you regrow your nerve so yeah there is hope for some people that they will get better.
Yeah, that’s really encouraging so I mean does that take years or how long does it take sometimes for someone like that?
Dr. Weinstock (14:52)
All right so there was a study out of Ontario where they looked at a community that a big outbreak of food poisoning. 33 percent of the population got ill became IBS patients, after five years fifty percent were better. They didn’t look at a picture for bacterial overgrowth so we didn’t really know, but basically, they’re 50 percent better then universally 50 percent kept on with IBS.
Okay, gotcha then one other question on that topic is for the blood tests. Let’s say someone orders the blood test and it comes back positive definitely they have you know IBS- SIBO from food poisoning event and then if it comes back negative does that mean for sure that it wasn’t from the anti-vinculin is that test totally correct?
Dr. Weinstock (15:51)
Well, it’s got phases to it, so there are different levels. It’s just like having a lupus test, ANA test. You have low-level test and you have a super high level. I believe it when it’s super low you probably say no it’s not significant, but your question is excellent so the key thing there is when you look at the IBS chec test I mean it says check this is IBS but you know they’re confirming you know saying this causes infection antibodies and then a different spot is checked if it’s negative saying no this is not IBS, you need to look a little further. Well, it could be IBS but it could be IBS caused by adhesion, so we’re finding that adhesion, with or without a history of surgery, can play a big role and I just published a paper on that but you will want to keep your mind open, you’ll want to start thinking about what other things cause SIBO let’s say because your breath test is positive or what other things cause IBS.
Gotcha, so if someone has that test and it comes back negative, definitely kind of start thinking about those other underlying causes and what else could be happening whether it’s an adhesion or any of the other conditions, right, okay.
Dr. Weinstock (17:17)
Ehlers-danlos syndrome, 2% of the population have it and they can have loopy droopy loops of the bowel.
Mast Cell Activation Syndrome
Interesting, so next next kind of topic to touch upon here is just a little overview for anyone who doesn’t know what mast cell activation syndrome is and what you’re seeing as far as the research you’re doing and how this may be linked to SIBO.
Dr. Weinstock (17:49)
Okay, very good question. So, it’s really exciting. This is something that was first reported in 2008 and case report 2011 20 patients and then most recently a case series of 400 patients in 2017 so think about time, that’s a baby in terms of intro, and so most physicians don’t know about it. More patients than doctors know about it to be quite honest because of the internet, so that’s funny right there. So with respect to this, you’re either born with a mutated mast cell and I just saw a mother son combo who live near a radioactive waste and she developed mast cell activation syndrome and he did from birth so you’re either born with it or you get secondary mast cell from lyme, from mononucleosis, from a vaccine that basically mutates the vessel so that when it comes out of the bone marrow to live in your tissues it’s more highly activated and releases chemicals on its own for no good reason and then you suffer from well over 48 different problems or I have a patient just like this last week, irritable bowel, stuffy nose, runny nose and some painful periods and that’s all she has as her main symptoms of active mast cell disease. And so you know it’s a wide range from being terribly affected to the mild disorder.
Gotcha, so when someone has mast cell does the SIBO occur with that or how does that connection play into it?
Dr. Weinstock (19:52)
So it’s one of two ways. The most likely is that the mast cells live next to the autonomic nerves that puts you in sympathetic dominance and when the sympathetic dominance, the small bowel doesn’t go into parasympathetic peristalsis you know you’re not in parasympathetic rest and digest phase. You gotta fight or flight phase, so you can’t relax, your eyes are wide open you know you your heart rate goes up when standing. These are the things that occur with sympathetic dominance and it’s because of the mast cells releasing chemicals next to the nerves and making the nerves misfire so if the small bowel is slow, you’re gonna have bacterial overgrowth, potentially, and that’s what I’m finding and I’m just doing this study now of 150 patients but I’m finding the breath has to be abnormal and 46% so far.
Really interesting, so this means that really anything that slows down the bowel or affects the function right has a potential to cause SIBO, is that correct?
Dr. Weinstock (21:04)
Postural Orthostatic Tachycardia Syndrome
Yeah, cool so next, another condition that’s being talked about I know that you’re researching as well is postural orthostatic tachycardia syndrome, right, so yeah what is that?
Dr. Weinstock (21:21)
Right, so POTS was first reported in 1993, once again all the articles on POTS are basically in the cardiology neurology literature so your doctor doesn’t know about POTS. He knows about orthostatic hypo-tension but basically, this is orthostatic intolerance, so what happens is if you’ve got this condition you stand up, your heart rate goes up like above 30 from lying to standing even more so in the morning and then you get sympathetic dominance with the things that I talked about. Your pupils are open, it’s hard to accommodate the light, your mouth may be dry, your urine is hard to pass and because of the sphincter increases tunicity, likewise with the rectum, with bad rectal tightening, so called speaker spasm, you have POTS. So pots can be caused by mast cell activation as I said, it could be caused by autoimmune disorders and it can be caused by random things like Lyme disease, Gardasil vaccine, trauma to the brain, post concussive state. So this is the known things that can cause it. EBV vaccine can cause it too.
Yeah and so I mean that kind of just shows how it just seems like IBS you know gut issues, in general, are just really linked to so many other things in the body right and something else is happening and they could potentially cause an issue in the gut or irritable bowel and what not.
Dr. Weinstock (23:14)
Yeah, so the thing is that I always emphasize is that IBS, a syndrome is a whole is basically a description of symptoms, with multiple causes that are not well defined. Well, I think we’re going into a golden age for IBS because we’re gonna identify all these things and then we will only be left with a handful of patients of idiopathic irritable bowel syndrome. Everybody will have irritable bowel disease or irritable bowel symptoms due to X Y or Z.
That’s really exciting especially for me as a patient when like a lot of people out there right who have IBS and SIBO are kind of put into this category right and it’s still like kind of very uncertain and we’re not really sure exactly sometimes what’s causing it for people so for me as a patient for a lot of people even watching this I think it’s exciting and I think you know it’d be awesome if we could get to the point where we can actually identify that underlying cause all the time.
Dr. Weinstock (24:25)
You’re so right.
Inflammation and SIBO
So lastly the connection between a couple more things. Restless leg syndrome and chronic fatigue, so I actually have had personal experience with both of these you know with the IBS -SIBO and then restless leg and fatigue right and I think a lot of people you’ve probably seen a lot of patients who also have these coexisting conditions going on as well right so what is the connection here between these?
Dr. Weinstock (25:00)
Inflammation. Inflammation, in an overview, in one word but that inflammation can come from many different things ranging from mast cell disease to gut disturbance change in microbiome it really can be so many different things if you look at mast cell disease, between 1 and 17 percent of the population have it and the two most common symptoms of it are fatigue and muscle pain. If I said that to any doctor or any lay person they would say oh that’s fibromyalgia. Well yeah, it is but it’s got a known cause. It’s not really fibromyalgia syndrome, its pain and fatigue due to something else and in this case mast cell. So but then again on the other hand when you have bad SIBO, you’ve got disruption of your tight junctions and gut lining, you have activation of lymphocytes and mast cells and creation of cytokines that circulate and go to the brain upset the HPA axis, the hypothalamic-pituitary-adrenal axis which causes fatigue. So that alone in SIBO plays a big role.
Yeah, interesting and it’s it’s kind of like, once someone gets into that cycle of you know this disrupted gut and maybe the microbiome change that you know it’s kind of like things just start to have a domino effect where other things start to occur, is that true?
Dr. Weinstock (26:49)
There is a vicious cycle that goes on. Because SIBO actually stimulates mast cells to be active and to deregulate again. It’s a vicious cycle and even if you don’t have the whole syndrome and you were dealing just with inflammatory cells locally, this bacterial overgrowth. There’s stimulation of the lymphocytes and mast cells locally causing trouble so people who have histamine intolerance they may, in diet foods, they may not have histamine intolerance because the mast cell activation syndrome but just locally they could have a problem.
Solutions for SIBO and Coexisting Conditions
Yeah, gotcha, awesome so I guess the last thing is just anyone who has a recurring or a tough case, so what would you advise them, basically to look at when they’re going to their doctor right to kind of be educated on maybe some underlying causes and you know really try and look into that first what would be your advice there? Someone’s having recurring issues and they cannot figure it out right?
Dr. Weinstock (28:00)
So I do find the breath test to be helpful to get an estimate of how bad their condition is and confirm it so if I you know treat with Rifaximin for instance and they don’t get clear this is perfect time to do breath test although that’s it, I often do it first to see how high the numbers are to get some feeling, A am I correct and B are they at high risk of relapse because of high numbers also do they have methane and need more than one antibiotic. So that’s a little bit of an answer.
Yeah, and then so let’s say they do a blood test that test comes back and it shows they have post-infectious IBS with the autoimmune component do you usually recommend a prokinetic in that situation?
Dr. Weinstock (28:58)
Absolutely, well I do, especially when you get a history that they’ve had it for ten years. You know one course of antibiotics, they’re gonna have relapses, their numbers are high, and if they have an associated condition that’s bad I also will use a low dose naltrexone, so it increases endorphins which modulate inflammatory responses and may reduce the antibody levels themselves.
Okay, cool, so that’s another good medicine right that someone should at least be aware of that could potentially help them, low dose Naltrexone.
Dr. Weinstock (29:37)
Right, and I have a lot of information and lectures I’ve given on my website GIdoctor.net.
Awesome, well so I guess you just said it but where can the audience find you to learn more about your research or maybe get in contact or something like that? What’s your website one more time?
Dr. Weinstock (29:59)
GIdoctor.net. And so yeah so that would be a way to learn and educate your own doctor and actually yourself so you come in and you know you see your Gastroenterologist and say hey I’ve done reading about small test bacterial overgrowth, I want that IBS Check test. I want a diagnosis and I want if it’s negative I want you to explore other avenues with me on my being and hopefully you’ll have an open-minded doctor or if you don’t move on.
Yeah, I mean that’s such a good piece of advice because at the end of the day we’re just trying to figure out what’s going on right and whatever we can do to figure out. Maybe even if it’s from food poisoning if it’s not that allows us to maybe start looking for these other causes that we’ve talked about, coexisting conditions and kind of just really dive more into it, kind of just a good baseline. So, awesome and I think that’s gonna be super helpful for my listeners. Really appreciate you taking the time to come on and chat tonight.
Dr. Weinstock (31:19)
Thank you so much.
For more in depth information on SIBO causes see the SIBO Causes and Co-existing conditions article.
SIBO and Coexisting Conditions Interview Summary
- Some doctors do not have an understanding of SIBO.
- There are four categories of conditions that lead to SIBO. Number one is malabsorption. Number two is anatomical disorders. Number three is immune dysfunction. Number four is motility disorders.
- Testing is important to rule out any potential disorder and/or anatomical abnormalities.
- The IBS check test looks for the autoimmune antibody, anti-vinculin, which could be the cause of IBS for some people.
- There are many coexisting conditions with SIBO, such as fibromyalgia, acne, anxiety/depression, restless leg syndrome, etc.
- Mast cell activation syndrome damages the autonomic nervous system, causing SIBO, muscle inflammation, chronic fatigue and a whole host of symptoms.
- Some people may not have SIBO, but actually have inflammation and visceral hypersensitivity which causes irritable bowel symptoms.
- One can be born with mast cell activation or can acquire it in their lifetime. Mast cell activation can put one in sympathetic dominance which slows the bowels down, oftentimes causing SIBO.
- POTS can be caused by a multitude of other illnesses.
- IBS is basically just a description of symptoms, with various causes.
- Inflammation is a huge cause of most SIBO symptoms, such as acne, restless legs and fatigue.