Have you ever been driven crazy with a crawling, tingling, itsy feeling in your feet or legs? Or perhaps you have experienced persistent redness on your facial skin that won’t go away.
In this episode of The Healthy Gut Podcast, Rebecca Coomes talks to gastroenterologist Dr. Leonard Winestock about why Restless Leg Syndrome and Rosacea are connected to the gut and SIBO.
In Episode 7 of The Healthy Gut Podcast, we discuss:
✓ Why up to 60% of people with IBS have an autoimmune condition
✓ The impact damaged nerves have with people experiencing IBS
✓ The importance of taking a full history when uncovering what is going wrong in a person’s body
✓ Why bloating does not equal SIBO
✓ Why Restless Leg Syndrome can stem from your gut and why having it puts you at an increased risk of having SIBO
✓ How treating SIBO can lead to a permanent eradication or severe reduction of Restless Leg Syndrome
✓ How treating SIBO can lead to a marked improvement in Rosacea
✓ How an imbalance of gut bacteria may increase the risk of colon cancer
✓ SIBO: Cure vs Control
✓ How Dr. Leonard Winestock uses diet to support the treatment of SIBO patients
Dr. Leonard Winestock is Board Certified in Gastroenterology and Internal Medicine. He is president of Specialists in Gastroenterology and the Advanced Endoscopy Center. He teaches at Barnes-Jewish Hospital and is an Associate Professor of Clinical Medicine and Surgery at Washington University School of Medicine.
Dr. Weinstock is an active lecturer and has published more than 70 articles, abstracts, editorials and book chapters. He is an investigator at the Sundance Research Center and has participated over 30 research studies. He is currently researching the role and treatment of small intestinal bacterial overgrowth in restless legs syndrome, irritable bowel syndrome and rosacea
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Rebecca Coomes is an author, entrepreneur, passionate foodie and intrepid traveller. She transformed her health after a lifetime of chronic illness, and today guides others on their own path to wellness. She is the founder of The Healthy Gut, a platform where people can learn about gut health and how it is important for a healthy mind and body and coaches people on how to live well with SIBO. Rebecca is the author of the world’s first cookbooks for people treating Small Intestinal Bacterial Overgrowth (SIBO) and the host of the SIBO cooking show and The Healthy Gut podcast.
[1:44] REBECCA: Dr. Leonard Weinstock welcome to the Healthy Gut podcast.
WEINSTOCK: Thank you So much Rebecca.
REBECCA: It’s great to have you here. I first met you at the symposium this June in Portland, Oregon which was wonderful to hear you speak at the symposium. And I was really lucky to be able to spend a few minutes chatting to you and also give to you one of my cookbooks which was great.
[2:10] DR. WEINSTOCK: I enjoyed that. It’s a beautiful cookbook.
[2:15] REBECCA: thank you. I would love to start with your story. How did you end up with an interest in gastroenterology and why you are interested in SIBO in particular?
[2:29] DR. WEINSTOCK: Well my flight towards gastroenterology started with a strong background in internal medicine. I felt that internal medicine just gives somebody a viewpoint of the person as a whole like no other whereas surgery was very limited and pediatrics was your own little thing and GYN was your own thing. But internal medicine just covered so much and it often brought into these interesting differential diagnoses of patients who have been suffering with conditions for a long time and that’s what I found with GI that there were many people who had unusual disorders and so many of the gastrointestinal disorders were called syndromes and that just really intrigued me because I thought when I went to med school everything is a textbook and it’s all spelled out. When it comes down to things so many things in gastroenterology are syndromes and they are real mysteries. So I like to think of myself as trying to solve mysteries because I have enjoyed detective shows and so forth. And that was one thing.
And then the other aspect is you do things, you do surgical techniques as well. So if there is gastrointestinal bleeding, you are not just ordering the test, you are actually doing the test. So for me that is a combination of both thinking skills of medicine and the surgical techniques that makes it all happen.
[4:11] REBECCA: And I think that anyone that has suffered from gastrointestinal issues can appreciate the detective mode in that often one has to play real detective with uncovering what is going on with them.
[4:28] DR. WEINSTOCK: It’s so true
REBECCA: talk to me a little bit about why you then got interested in SIBO?
WEINSTOCK: Well SIBO was fascinating because for years I have been talking to patients about irritable bowel syndrome and it’s so fascinating to me that there could possibly be a condition that 15% of the population has but we don’t really know exactly what is causing it. So for the first half of my career from 1985- 2000 that was just a matter of waving my hands and saying, “Oh we think it’s your reaction to food and gas, hypersensitive, and the nerves therefore are abnormal and there could be stress.” And all these kind of hand holding and hand waving if you will. And then during the lot of part of those 15 years, I became interested really in motility and irritable bowel syndrome and was asked to be on a support group, on the internet support group for irritable bowel syndrome and so I was the pharmacology expert and would input on that, on new treatments and so forth. And somebody asked me, “what about the article that came out in 2000 for bacterial overgrowth? The treatment was neomycin and getting better from irritable bowel syndrome.”
I actually had American Journal of Gastro on my desk ready to read and I haven’t gone to it. so I immediately turned to the article and I said, “That is interesting that you could actually get rid of irritable bowel syndrome with an antibiotic.” And by doing so it was remarkable thought. And so I started treating empirically patients with the antibiotic and seeing some good responses and then there were some written information that time about doing a breath test and I didn’t have access to one in my office but there was a little hospital that had been doing breath test for quite some time. So I started ordering them. And that put some science to what I was doing. And so I started treating with neomycin and then later Cyproflaxin and Metronidizole. Some patients would get a dramatic response. Nothing else had worked before. They get a dramatic response. They relapsed. They would retreat them and then they’d wean off the response and would not have the marked improvement that they once did before.
And so my interest waned a little bit but then it was peaked dramatically when Cyfaxin or Ryfaxamin was introduced into our country and then I went to an educational meeting about that and learned about how this drug was not absorbed in the GI tract but then it was working mainly in the gut bacteria and the small intestine because of its properties being able to work through bile were the small intestine had bile on the surface and you could get through this bile later with the antibiotic and treated the different kinds of bacteria. And the cool thing about is it doesn’t have a resistance factor like other antibiotics operating in a different way
And then at the meeting I also discussed that had a role in another condition called fibromyalgia which I think many of your listeners know about or have. And the breath test abnormalities are even greater in the patients with fibromyalgia. And so at that time I was taking care of a relative who had post infectious irritable bowel syndrome and restless leg syndrome. And this whole concept of post infectious irritable bowel syndrome came out which we will talk about later. And I asked my cousin whether he had acquired the restless leg syndrome after the irritable bowel started and he did. Then I started reading about fibromyalgia and 20% of fibro patients have restless leg syndrome which is much more the general population. So I started thinking, “Wow, was there a relationship here? If fibro patients had small intestinal bacterial overgrowth or SIBO, could the patients with restless syndrome had the same?”
And so I treated him and he had a dramatic improvement in the restless syndrome using Cyfaxin and that started my interest in looking at things outside the gut and basically getting back to internal medicine where I had interested in looking at how the body is affected and where does this stimuli come from. And so that’s how it got started.
[10:32] REBECCA: So I am interested to know, I think it’s fascinating that your journey and interest and what’s really interesting is that it’s looking at the whole body and realizing that they are connections between one condition and potentially another. I would love to know what you commonly see in your practice and who are the types of people that you are regularly treating?
[10:56] DR. WEINSTOCK: on the office side of things, a gastroenterologist will often treat irritable bowel syndrome and acid reflux disease and Crohns disease and all sorts of colitis. Those are the top 4 causes for unknown causes for pain and bloating that brings things up as well. And nausea is a big category of illness and in the morning most gastroenterologist are doing procedures and doing colonoscopy and looking for pile ups and causes for diarrhea. So these are some of the things that a gastro does with respect to who comes in with irritable bowel.
What they are like? I see more and more of second and third opinions because they are often dismissed. And this is one of the things about syndromes and patients that bother me in our society and doctor’s approaches is that many patients come in. their condition isn’t easily understood. It’s not like hypertension were you can try one drug or another and you can do one test or another and they say which kind of hypertension they have. Up until recently with both breath testing and special blood test we haven’t been able to dissect the patient’s out form this big pie of irritable bowel syndrome into different specific pieces. So for instance if I can take a syndrome like irritable bowel syndrome and view it like pie and slice out a portion who have it due to SIBO then I feel, “Ok I treat these people very specifically. If it’s gluten sensitivity, take out a portion, put it aside and work on that with diet.”
And so forth until you get to this idiopathic conditions of unknown were the same set of symptoms are dealt with by all these people in the syndrome. But if we can get out of our global view of irritable bowel syndrome as one unknown and stop treating them as if there is nothing specifically wrong with them then we can start getting ahead in how we treat our patients.
[13:38] REBECCA: and I just think that is music to my ears. I was one of those patients for years going backwards and forwards to doctors complaining of digestive complaints and being diagnosed with that broad sweeping term, you have IBS and there is nothing we can do about it. Just deal with it. Stop being stressed and be careful with what you eat. So it’s something I lament on as well that people unfortunately still today are being given a sweeping diagnosis with not much assistance on what they can do about it.
I am really interested to know if there are any figures around this piece of pie whether are stats on how many people with IBS are due to SIBO and how many are due to gluten sensitivity or other conditions. Is there any research around that we can kind of classify that piece of pie?
[14:38] REBECCA: Yes. So if you look at the data for this new antibody test, work has been recently showing that there is an antibody in quite a number of patients with irritable bowel syndrome and diarrhea that it is looking like up to 60% of patients with IBS-D (irritable bowel syndrome diarrhea) have an antibody and this goes back to this whole idea that some of our patients, perhaps many of them have post infectious irritable bowel syndrome. So just to put that concept into facts, there’s a 7 to 30% chance that when you get an infection with a bad bacteria, that you’ll get post-infectious irritable bowel syndrome. Never had IBS before but then sometime after usually three months or more you’ll get irritable bowel syndrome. And so with this antibody testing, anti-vinculin, and anti- CBD4, there is evidence that these antibodies destroys my interplexus nerves, nerves that are running alongside and into involving the small intestine and if you lose those nerves then you are losing the contractions at night that keep our small bowel clean. So if we damage the cells, interstitial cells with this antibody you lose the migrating motor complex, the sweeper wave that keeps the small bowel free of bacteria. And then you are at risk for getting bacterial overgrowth.
So, studies have been done suggesting body’s statistics and projection that up to 60% of patients have IBS due to this autoimmune condition. Which is interesting because if you look back at breath test results between 40 and 60% of breath tests were positive in patients with IBS-D. and so that is sort of one to one correlation there that now makes sense. We just said to deal however with the problems of breath test that is now very specific and there is a lot of none believers in the medical profession in the research community because of certain aspects to how sensitive it is that it just seems to be too non-specific. But with the blood test looking at an antibody, that gets to hard date it. That can be looked very clearly.
[18:00] REBECCA: Definitely. It’s such a shame that here in Australia we don’t have access to that test yet. So hopefully one day soon we are able to do that test here as well. But it is available in America and I don’t know if it’s available anywhere else in the world. Do you know if it is available in any other countries?
[18:21] DR. WEINSTOCK: Not to my knowledge
REBECCA: In terms of other pieces of that IBS pie who else makes that pie up? What other conditions can cause that?
WEINSTOCK: Ok. Certainly food sensitivities. Whether they be specific or non-specific. Certainly there are some celiac disease patients. They can be labeled incorrectly as irritable bowel syndrome because the symptoms are so similar many times. But hopefully we have taken them out of the idiopathic pie. Gluten sensitivity, I think it’s in it because most in general, we don’t have any biopsy proof that gluten sensitivity clearly exists. I have seen some electron microscopy were people are gluten sensitivity. They don’t have celiac disease and yet if you look under this extremely high powered microscope where you are really looking at a couple of cells at a time, it’s so high powered. You can see these little vacuoles or little balloons near the lining suggesting that gluten sensitivity is a real disease. But at this point I would say 2% of the population has gluten sensitivity and there can be other symptoms that go along with that including headaches and fatigue as well.
Other aspects… I think that the nerves are abnormal. Man patients who have irritable bowel syndrome. We do see mast cells that are deposited in line of patients with irritable bowel syndrome. And we see other inflammatory cells that come in to the lining. So I think there is an inflammatory type irritable bowel syndrome which is where I think some of my patients who have failed many times, get better with low dose Naltrexone because it reduces inflammation in particular lymphocytes. So mast cells, I don’t think receive the attention they deserve and there are some nice studies showing that the closer the mast cells to the nerves, the more pain a patient would have irritable bowel syndrome. And mast cells release a variety of chemicals like histamine and tyrosine which activate the pain sensory fibers.
So that may be some of the reasons why we have specific food sensitivities especially in irritable bowel syndrome, food obviously in your book is well demonstrated. It plays a big role in SIBO in terms of what we are feeding our bacteria. So if you feed you bacteria that you’ve got an excess, too much carbohydrates and indigestible sugars, they are going to have a feast and cause bloating and gas.
[21:50] REBECCA: They are. And uncomfortable symptoms as well.
WEINSTOCK: now finally I think there’s patients were they have these abnormal nerves. Are they inflamed or just abnormal for some other reason perhaps some tract in the brain, gut tract is off of kilter but we have visceral hypersensitivity at the heart of many patients with irritable bowel syndrome. You stretch the colon ,you stretch the small intestine and then you are going to cause problems with pain. Again that could be going on at the same time bacterial overgrowth is going on. So you increase your gas production. You stretch out the small intestine before the gas is able to travel to the colon to be expelled and takes longer to get absorption of the gas in the small intestine. So it stretches out and those nerves get activated and cause problems.
[23:07] REBECCA: So it’s really a bit like a vicious cycle in that if the gas continues, the nerve damage can continue which can lead to more motility issues which kind of keeps going around in circles amongst other things.
[23:23] DR. WEINSTOCK: And then of course we step towards – well what else do bacteria do? they cling on to the small intestine lining. The small bowel doesn’t like it. it’s not used to having bacteria. So it really is not used to have these toxic bacteria clinging on and then a lot of these cells, bacterial cells cause damage to the lining of the intestine and increase intestinal permeability so called leaky gut. When that happens then other chemicals, food antigens or bacterial byproducts get in there and that stimulates the lymphocytes to ultimately produce inflammatory proteins called cytokines. And draw in other inflammatory cells causing inflammation and then that damages the lining of the intestine which then has a vicious cycle of its own. It becomes leakier. With that toxicity comes in and more inflammation starts. And this is where i think the gut starts reaching out to other parts of the body. And maybe a lot of what you are going to get is what your biological make up is. So if you’ve got a certain genetic make-up or phenotype, you are more likely to get one disorder versus another.
But I have seen one of my patients who came in had all the symptoms. It was one after another. Post infectious irritable bowel syndrome then restless leg syndrome then fibromyalgia then interstitial cystitis. And it’s just one after another every two years she got a new syndrome. And she actually was able to reverse virtually all of her problems with antibiotic therapy and then ultimately with Naltrexone settling down the inflammation.
[25:48] REBECCA: Wow! That’s fascinating. So what is your approach when a patient presents for the first time in the clinic and they are in a bad way? What do you commonly say with someone that is complaining of irritable bowel syndrome and how do you approach their treatment?
[26:12] DR. WEINSTOCK: IBS is generally defined as abdominal discomfort 3 months or more per year with associated changes in the bowel frequency and form and with partial relief of symptoms with illumination. And I say that partially because it doesn’t really account for all the patients with small bowel symptomatology because those patients are having issues with distention and bloating and ultimately if there is enough acidity that is created by the bacteria. It may cause contractions and increase output of fluid and then they get diarrhea or as we have gotten to know over the last 10 years that if they are making bacteria making methane they not only get bloating but they constipation.
So my history taking is really important in terms of defining their syndrome, seeing how bad their bloating is, seeing if it is visible bloating as opposed to feeling distended because if they are not visibly bloated, that somewhat decreases the likelihood of SIBO but not entirely. And on the vice versa aspect to that, abdominal bloating can occur without SIBO just because it’s a relaxation of the lower abdominal muscles in response to pain. And so you relax the muscles that helps alleviate some of the discomfort in general. So there are couple of different mechanisms for bloating asking about the type of gas that they have, malodors, if they have any passage of the gas/chemicals into their mouth with bad breath, or chemicals that are actually coming out of the urine. Those are important questions too.
Then the work up I do is perhaps not what everybody does I would say. We actually do quite a bit of breath testing to get a feel of how severe the abnormality is if they’ve got a very high peak on the hydrogen. Those patients can be tough to treat. We know that they may need several courses of therapy or drawn out courses of therapy, motility may be a big issue and that is where getting the blood test could be helpful. The IBS anti-vinculin could be helpful. Although I find that actually to be even more helpful when I have patients who have been relapsed or frequent relapse and what I think should have worked. I say, “Maybe it’s not this post infectious autoimmune disease. If it’s not, what is it?” do they have some other disease that is associated with the small intestine bacterial overgrowth such as scleroderma or pseudoobstruction or adhesive disease.
[29:44] REBECCA: I am quite interested in the comment you made about the bloating doesn’t necessarily mean it is SIBO and something that I hear from people quite frequently is that they have treated their SIBO, they have received a negative breath test but they are still bloating. And they are feeling particularly uncomfortable and embarrassed about that because no one wants to look pregnant when they are not man or woman. So what would be your advice to somebody that is listening to this podcast that are still bloating even though they have successfully at this point in time treated SIBO?
[30:27] DR. WEINSTOCK: there are other concepts for it. Ok. So that’s something that you need to think about. Air swelling, gastric outlet obstruction, small bowel adhesions, diseases like pseudo obstruction. Although that is often associated with bacterial overgrowth. Air swelling can be a tough one. There are people who have nervous habits of taking gulps, drinking out of the bottled water, and gulping down water with it. So that air which is typical atmospheric air does not get absorbed very well by the small intestine. So that is an aspect.
And then finally irritable bowel syndrome without bacterial overgrowth can be associated with pain and again it could be just relaxation of the gut wall to deal with pain. It’s kind of like undoing your belt buckle when you are uncomfortable. It makes a difference. It gives more room for the organs to move around.
[31:46] REBECCA: Definitely. I am really interested in this sort of gulping air or drinking from a bottle. Is that just literally when you are drinking from a water bottle that you can be taking in air? Or is there something that people are doing specifically when they are drinking that causes the air to go in?
[32:03] DR. WEINSTOCK: well, it’s the glug, glug, glug. When you hear the glug glug glug sound, that means air is going in. and if it doesn’t come out as a belch then it is going to stay in your gut.
[32:20] REBECCA: Ok, interesting. Wow that’s really interesting. I at times have been known to gulp down drinks. But my mum can’t. She just takes sips and we have always teased her about that but now I think that is probably a good thing that she is just sipping her liquid.
[32:41] DR. WEINSTOCK: Yeah she is prim and proper and taking sips and not running around. Sure that is good.
[32:49] REBECCA: And also not potentially swallowing air which is good for her.
Are digestive disorders and discomfort on the rise or is it that we are just getting more aware of them?
[33:01] DR. WEINSTOCK: I think there are two main factors. Number 1, a lot of people who are sitting at home are just dealing with this at home. People are traveling more and they may go to underdeveloped countries or to countries were cleanliness and safe water supplies are not at hand. And then on the flipside, if we are getting more fruits and vegetables from foreign countries, then it puts us at risk for getting infections because they are coming in and we are not washing our food as well as we should.
[34:26] REBECCA: and I am interested to know whether once you get some food poisoning or infection from contaminated food, whether that makes you more susceptible to it because I found personally that I have traveled almost extensively as an Australian. It’s almost the right of passage we leave our country and we go off wandering. And so I have travelled through Asia, South America. I lived in the UK for 7 years. So I have traveled throughout Europe and I have been into Northern Africa. I went to Egypt and it felt to me that every time I went away from the first time I left Australia, I would get food poisoning. I would always end up with food poisoning and I have picked up parasite infections as well. I have done that a couple of times. And it feels to me that I am susceptible because nobody that I am traveling with seems to get sick like I do.
So am I now more susceptible because of the infections I have received in the past?
[35:26] DR. WEINSTOCK: Well perhaps your gut is not yet healed completely. It’s one possibility that if you don’t have an intact bile layer protecting your small intestine. And let’s say the mix of bacteria in the colon have been altered by antibiotics or by bacteria, you may not have the protective balance in the colon that you once did putting you at risk for other bacteria coming in. so your immunity may be altered in the setting of SIBO such that you are at risk for other insults.
[36:12] REBECCA: definitely. And I know that I have done all of that travel I have talked about was prior to me discovering I had SIBO and then working on healing my gut. I haven’t left Australia since so it will be interesting to see what happens next time I travel after taking a lot of effort to heal the lining of my gut.
Let’s talk about restless leg syndrome. I know when I first heard about SIBO and I heard that restless leg syndrome was a common symptom, I felt like a hallelujah moment after years of having very annoying restless legs. I now had an answer of what had happened that I no longer suffer from it now that i have treated SIBO. Can you talk a little bit about why that occurs and what restless leg syndrome actually is?
[37:04] DR. WEINSTOCK: Well restless leg syndrome is defined as the compelling urge to move your legs while you are awake in the evening, getting worst at bedtime with usually in a disagreeable sensation. It could be a creepy crawly feeling, tingling and aching. And with that urge to move you will get temporary relief. You are walking, you get up and walk and you can get relieved. So it makes it difficult for people to get to bed. Now it may be associated with kicking and jerking in the evening while you are actually sleeping. That’s purely motor limb disorder. So it runs in parallel but it doesn’t necessarily mean that if you just kick your legs while you are sleeping that means you have restless leg syndrome.
Restless leg syndrome again is you are conscious. People could be on long trips, in a car or plane and they just have that oopsy feeling. They got to get up and walk. They just can’t keep their legs still. So it’s very bothersome. And it is associated with significant…two significant problems – hypertension and stroke. There’s a higher risk. So whether that’s through an increase sympathetic nerve tone. We are not sure. So it’s not just a…it’s a bothersome problem. It actually interferes getting to sleep and people can wake and then they have and they can’t get back to sleep. So it’s a real problem. But what is fascinating to me is when you look at the condition you’ve got primary or restless leg syndrome of unknown cause. You got familiar restless leg syndrome and then you got secondary restless leg syndrome. And there have been 50 conditions that have been reported to be associated with and or contributed to restless leg syndrome of which 40 have been looked at to have comparison to control groups. So there’s very specific disorders. 15 different neurological disorders. Five different GI problems. 5 different rheumatological problems. 6 different metabolic problems. 5 pulmonary disorders that actually are associated with restless leg syndrome.
And for years people have thought well there is none of iron in the brain. There have been studies looking at that because if the dopamine cells don’t have enough iron they don’t function well. And so that gives rise to this feeling. And why it occurs at night, we are not a hundred percent sure. Although, there is thought that influx of iron occurs more at night in normal people and if you have restless leg syndrome that is not happening.
But of these 40 conditions 15 have been previously tested on their own for small intestinal bacterial overgrowth and all 15 have had positive tests. So people with irritable bowel syndrome, liver disease, pulmonary problems, rheumatological conditions and rheumatoid arthritis have been associated with small intestinal bacterial overgrowth. So that really made me exciting to say, “Ok well maybe it’s all about the gut.” And the problem is when I started looking at drug studies just aimed at treating the gut only for SIBO, I get good response but not everybody was responding and there would be a limitation to how good people got. But when I started adding naltrexone to it, then I had better improvement. And what happened was, I started looking at the literature and it turns out one of my research partners in Vanderbilt had looked at the amount of endorphins in the brain in patients with restless leg syndrome and there was less endorphins in the brain and the endorphins protected dopamine cells in the setting of iron deficiency.
So now what we are doing is we are treating SIBO and giving endorphins to increase…sorry… we are giving low dose Naltrexone to increase endorphins to help get into the brain and protect the brain cells and dopamine functioning. So that’s part of it.
And then finally, inflammation and/or immunological disorders with these 40 conditions is very common. So we are looking at – is there abnormality of the T-cells. Remember I said with this in the gut we could have abnormal T-cells and conceivably antibodies can be formed by these T-cells and then perhaps those are attacking the endorphin cells in the brain and contributing towards this. So our life could be going on with restless leg syndrome but with what I called sequential treatment, I have gotten very good results. We treat the SIBO first and then we give the therapy with the LDM afterwards in terms of one study that I looked at with 40 patients, 65% had a remarkably better and or moderately better response than they did before treatment.
Some of these patients were markedly better, went into complete remission which just generally doesn’t happen in treating restless leg syndrome with conventional therapy.
[44:13] REBECCA: that is so interesting. And I am kind of also living proof that once you start working on the gut, restless leg syndrome kind of vanishes. It’s amazing. I used to get driven crazy at night with my feet feeling like they were just full of ants and the worst place for me to get restless leg syndrome which I always got was on long haul flights and I used to fly backwards and forwards between Australia and the UK every year. So 24 hours of travel and by the end of it I felt like I was ready to rip my feet off. I was going crazy. And I found actually as well for me that my restless leg syndrome got worst when I was tired which obviously you get very tired on long haul flights. So the sign for me that I was getting tired of the day or the night was my feet would get very uncomfortable.
Fascinating. Such fascinating stuff. The other condition is rosacea and I would love to hear a little bit more about what that condition is and its connection to the gut.
[45L24] DR. WEINSTOCK: Well rosacea has different forms. It generally involves the skin and the face, the cheeks, the chin, nose, and forehead. And it’s reddening, flushing, bumps with papule’s or pustules or thickening of the skin but it can also involve the eyes and the area of the eyes that are involved or the lids. And the glands that produce the mucus and the tears, the meibomian glands. And it should be considered a syndrome too. It’s funny that they don’t call it rosacea syndrome but it is yet another condition that we don’t really know in the majority up until 2008. So I was reading one of my journals in 2008 and lo and behold there was a study out of Italy were they made a correlation of rosacea and SIBO and they took 113 consecutive rosacea clinic patients and gave them breath tests. And 46% of those patients had a positive lactulose breath test. Now I would like to say one thing about breath testing that we do the study of completely healthy patients, 30 completely healthy volunteers and 10% had an abnormal breath test. So you know and yet there was no reason to expect it, no symptoms and so forth. So it’s not 100%. But even if you look at 10% positivity of controls versus 46% of the rosacea patients, it’s still very significant. And I looked at 63 consecutive patients that came to my clinic mainly for colonoscopy.
I identified them as, “would you like to get a breath test and see if you could treat you in a different way?” and my percentage was about the same too 41% had a breath test that was positive who had rosacea. So in the Italian study they looked at age match controls and they have 5% that had a positive breath test.
So in there study if the patients had a positive breath test and they were treated with Rifaxin or Cyfaxin basically for 10 days, they had a relatively smaller dose of recurrently using now. They use 1200 mg a day rather than 16-50. They had a significant response. Approximately 70% cleared the rosacea completely. And 21% had a marked improvement. So close to 92% had a dramatic improvement if their breath test normalized. So that is pretty exciting and at the same time we compared them to placebo and the placebo patients 2 out of 20 worsened and the rest 18 were unchanged. So that is pretty powerful statistics and their GI symptoms got better as well.
So when they looked at patients who did not have a positive test for bacterial overgrowth, none of those patients got better. And so that’s pretty good evidence that we have an effective treatment and then it looked at my statistics and basically 46% of my patients had a clear or marked response. 25% had a moderate response. 11% mild and 18% unchanged. And these were patients that had positive breath test and were treated. And I am getting similar results in patients who have ocular rosacea and a number of the patients I see with ocular rosacea had the disease limited to their eyes. But only about 30% had a positive breath test in that setting. So dermal involvement is a bit more significant and yet it can play a role in patients who have the ocular rosacea where you get dry eyes and foreign body sensation and redness of the cornea as a secondary phenomenon.
[50:50] REBECCA: interesting. And do we understand why SIBO can lead to or what the correlation is I should say between SIBO and rosacea.
[51:05] DR. WEINSTOCK: it hasn’t been tested but my feeling is it is related to systemic cytokines. Mainly these chemicals that are triggered by our leaky gut that then travel systemically and if you’ve got a gene that makes you predisposed to having rosacea then you are going to get your skin activated, inflamed and affected.
[51:38] REBECCA: and I hear from lots of people that they often have skin complaints as well as abdominal or gastrointestinal complaints as well. So they very much seem to go hand in hand.
[51:51] DR. WEINSTOCK: Absolutely.
REBECCA: one of the things that I used to be absolutely terrified of when I was quite unwell was when all of these was leading to cancer and I know I am not alone in that fear. I hear from people all the time saying, “I am so scared. I am just waiting for a diagnosis of cancer.” Are there studies to show that undiagnosed or untreated digestive disorders can then lead to digestive or gastrointestinal cancers or is it us just being a little bit nervous or hypochondriacs?
WEINSTOCK: Well I think you have to look at 2 things. You have two big organs in your body. You got the small intestine that is 15 feet and you got the colon that is 6 feet of intestine. And then the colon, you’ve got anywhere between 13 and 100 trillion bacteria in the gut. And I think there are some studies to suggest that colon cancer can have a different set of bacteria in the colon that predisposes towards colon cancer. So I think if anything is going to increase the risk for cancer will be an imbalance or what we call disbiosis in the colon and there are many medical conditions ranging from Parkinson’s disease to diabetes were an imbalance in the gut bacteria are playing a role and mainly in the colon.
So I think that SIBO per say I have not seen research to really support risk of cancer in that setting.
[53:47] REBECCA: And how do we find out…. Is there a way to find out if we have an imbalance in gut bacteria?
[53:52] DR. WEINSTOCK: So there are companies that do analyze the bacteria. Send a stool sample into a company like Genova and then Rocky Mountain company. There is one other that you can send stool samples in to get a bacterial balance to see to what is out of what, to see if you have a narrow group of bacteria that are there as opposed to a wide spectrum of healthy bacteria.
The trick is, how do you treat that if you do have that? And at this point there are some evidence that the FODMAP free diet can swing yourself to a healthier state. I think the same could probably be said for a specific carbohydrate diet. Although I haven’t seen evidence of that but I think it’s possible. And probiotics may or may not play a significant role. Just because we are talking about taking in billions o bacteria, when that is thrown in a mix of trillions and the degree that those billions can make a big difference is questionable. I think that is not to say that you can’t get benefit, symptomatic benefit but can you turn your whole gut bacteria around is uncertain.
So I think that changing the food that your bacteria eating in the colon are probably the best ways to get a healthier mix of bacteria.
[55:47] REBECCA: What about fecal matter transplants? What do you think about that?
[55:52] DR. WEINSTOCK: I was going to say about that.
I mean I think there are some patients who have totally refractory irritable bowel syndrome and changes in the gut bacteria in the colon have been associated with irritable bowel with diarrhea that may be a very good future way to change it. My only concern is how effective will it be because we do these colonoscopies. You clean out the colon perfectly and then two days later you are having bowel movements half of which are fecal byproducts. So it comes back very rapidly. So putting in healthy groups of bacteria, it may require treatment after treatment after treatment to possibly to really get a foothold of this new bacteria to overwhelm your unhealthy mix. But I think it is possible. I think that it is possible that manufacturers of spores, capsules with spores of bacteria where you can get anaerobic bacteria into the colon which is really important could be helpful when we are taking probiotics or generally aerobic bacteria.
So there may be matters likely to survive in the colon which is anaerobic setting.
[57:26] REBECCA: I am just going back to SIBO. I’d love to know whether how often do you see success cases with SIBO and if you feel that SIBO can successfully be treated and kept away for good?
[57:42] DR. WEINSTOCK: So is it curable? I think it is highly treatable and some patients can be cured in time. And that is a question to be addressed with future studies. So if we had a wonderful treatment for let’s say the autoimmune aspect to irritable bowel syndrome or this anti-vinculin then it has been shown that if you can get rid of the anti-vinculin by experimental means, these cells that are causing slow motility could get better. And that is where I am hopeful that some of my patients who are being treated with Naltrexone where there may be lessening of the antibody and perhaps with herbal therapies could get better and their nerves could regenerate. In time, some people who have autoimmune diseases do get better. The stimulus to the production of them get better. So if we are aggressive in treating the bacteria, we are aggressive in treating the gut lining disturbance, it may lessen the production of those T-cell activities and the antibodies are producing.
So what percent get better with standard two week courses antibiotic therapy… I’d say about 80% and then other 20% you have to re-treat, re-treat and then many of those get better. If they are due to motility disturbance, keeping it away by medications such as low dose erythromycin or sometimes low dose Naltrexone or prucalopride can stimulate the small intestine and keep the bacteria out by keeping the motility going. But if a patient comes to me, they have it for ten years, I’d say, “Well there is a concern that we are not going to get this into a cure but we can control it.” the diet I think plays a big role in getting into somebody into remission faster and perhaps keeping them there because let’s say you have got a situation where 90% of the bacteria in the small intestine have been killed up but you are feeding them food, SIBO friendly food if you will. Or bacteria friendly food. Then, at some point it is going to tip the scales and the symptoms are going to be active because the number of bacteria in the gut have overwhelmed what a motility medicine can do.
[1:01:00] REBECCA: In terms of the nutritional component and that is something that I think people get very… they can get quite upset about because food is something that they can’t control, that they are eating every day, do you advise that people do…remove or reduce their carbohydrates when they are treating SIBO if they are taking say Rifaxamin or do you have them on what would be a standard American or Australian diet? What is your approach?
[1:01:33] DR. WEINSTOCK: I do low FODMAP diet, no artificial sugars except Stevia. But no alcohol sugars at all and as low carb as they deal with especially during the first four weeks of therapy.
[1:01:57] REBECCA: And how long do you have them stay on that diet?
WEINSTOCK: Generally about 8 to 12 weeks and then start reintroducing foods that they desire. But they always stay away from fructose, high fructose corn syrup which is like gasoline to a fire.
REBECCA: And so readily available in our processed food. Unfortunately.
One of the things that I realized as I started to get well as I worked on my health was there was not just the SIBO that I needed to address. There was other areas in my life and I sort of as my 5 key pillars to success when it came to my health. My first step was awareness. I had to start to get aware of what was happening to me. How important do you believe being aware is in a person’s journey to health?
[1:03:00] DR. WEINSTOCK: Well I think they have to be aware they have got a condition and if they are going to partner with their doctor in terms of giving better. So awareness that they are not at fault for this condition I think plays an important role.
[1:03:20] REBECCA: And I really like what you say about partnering with their physician. It’s so important to find people that you can work with because it’s not always a quick fix. In terms of nutrition and we have talked about it a little bit I know for myself when I first had to strip out a lot of foods, I felt pretty angry about that. What do you see with your patients? Are they happy to eliminate foods or are they often a little bit angry like I was?
[1:03:54] DR. WEINSTOCK: they didn’t express the anger to me. They may do it at home but they don’t express the anger to me. They just kind of what to know a time zone, when am I going to be able to eat pizza? It’s really… it comes down to simple things like that.
[1:04:13] REBECCA: And do you feel that people can go back to what they would consider a normal diet of being able to eat pizza or burgers or fries?
WEINSTOCK: Many do. I would say many many do but I would say I have got several patients who say, “I just fell off the bandwagon. I had much more fruit and wine and that triggered a flare.” So I will hear that from time to time. And that is where they got their living well with the 90% clearance. But there is still 10% of the original bacterial load in their small intestine. They feed it then they are in trouble. And that’s why I think your book, I think is very helpful for people to come up with good diets that are healthy for the long run.
[1:05:13] REBECCA: definitely. I know for myself that I allow myself little treats here and there. But on the whole I feel so much better for eating clean healthy food that I don’t really want to go back to the way I ate before. And I am really happy to make food from scratch and to know where my food has come from and to really limit the amount of processed food that now is in my diet because I feel good for it. and if you had said to me 2 years ago when I first started this journey into getting well with my digestive health, if you said to me that I would be really happy to drink alcohol very rarely and not eat much processed food, I would have laughed and said sure. Right, ok. In another parallel universe maybe but not this one.
Another component that I worked on was movement. I am one of those people…I am lying on the coach or I am running a triathlon and when I was feeling very unwell my movement suffered. I have been feeling pretty flat and I just wasn’t moving my body. Do you feel that there is benefit in people moving and that could just be walking or doing yoga or it could be going into a cross fit session? Do you see any correlation with your patients in whether they are being active and moving versus being sedentary?
[1:06:48] DR. WEINSTOCK: Excellent question. Conceivably indirectly. In other words, if exercise which it does increases colonic activity, then there is less bacteria sitting around in the cecum where retroactive movement of the stool up into the iliocecal valve could put more bacteria there and at risk for ascension into the upper small intestines. So it’s conceivable that that’s the factor involved. I haven’t actually discussed that with too many of my patients but that is very good. Plus exercise in general just makes people feel better.
[1:07:37] REBECCA: It does. I know when I…and for me my exercise these days is walking. So I have gone away from the really intense exercise and am a podcast addict. Not only do I do my own podcast but I love listening to others and it is my time out when it is just me, myself, my podcast, the fresh air and I love it. I love getting out and walking now. Makes me feel great.
The fourth component that I had work on was my mindset because I had identified as being a sick person for my entire life because I always shad been and I didn’t know how to think of myself as as a well person. I also found that I was pretty negative about things. I have already said I was pretty angry about removing foods and feeling really like the world was unfair that I couldn’t eat burgers and fries and pizzas. So I had to change how I thought about things. Do you see that with that in any of your patients in terms of those that start to look at the positives rather than focus on the negatives get well quicker?
[1:08:49] DR. WEINSTOCK: Interesting. I haven’t evaluated that. I certainly recognized seeing patients see patients who get well and feel better psychologically. And then there are some evidence that SIBO inflammation directly affects the brain in terms of cosyntropin releasing factor which then results in depression and changes in serotonin and the brain. So I have seen people come in for follow ups who have like just their GI symptoms are better, they feel lighter on their feet so to speak and their color is better and they just have much better mood. So is it direct or indirect? I am not sure. But I think that it can play a big role in their own mood. So SIBO itself and the inflammation can be associated with change in their adrenal… pituitary adrenal access. So it’s hypothalamic pituitary adrenal access is all important about fatigue and perhaps if we improve that we get less inflammation, less of the bacterial shells coming into our blood stream that will help in terms of how they feel as opposed to wishing for better health and getting better health.
[1:10:31] REBECCA: Yeah sure. The final piece that I had to work on was my lifestyle. So I had been chronically stressed. I wasn’t sleeping well. I was getting to bed really late. So not getting enough hours of sleep at night and I needed to readdress some relationships in my life of people that perhaps weren’t the best influence on me. And so I needed to do that to support my journey to health.
Do you see any correlation between sleep or stress levels or even perhaps toxic relationships that people might be experiencing and their ability to manage or work through a condition like SIBO?
[1:11:19] DR. WEINSTOCK: Well in general with irritable bowel and abdominal discomfort, the more stressed the worst the discomfort. So there is a definitely a brain- gut relationship going on from north to south with respect to rest. Rest is important because during that time you are fasting, obviously you are sleeping and you are giving yourself a little more time for whatever migrating motor complex you have or can generate with medicine to wash the bacteria out.
[1:12:00] REBECCA: Since coming through my SIBO treatment I now do intermittent fastings. I fast two days a week were I just eat dinner and I feel fantastic for it. it really makes me feel really great. So that has been an interesting self-experiment for me.
REBECCA: Yeah it is really interesting. I feel I have so much more energy. I feel really positive. And for me I feel like on the days where I do eat 2 or 3 meals a day that i don’t have as much energy as I do on the days that I am fasting. So it has been fascinating personal experiment of one.
WEINSTOCK: well you have enlightened me on many aspects this evening.
REBECCA: That’s great. Dr. Weinstock, it was been an absolute pleasure to have you on the show. Thanks so much for coming on. I have learned a lot and I am sure my listeners have as well. If anybody wants to connect with you what is the best place for… or how is the best place for them to do that?
WEINSTOCK: Short questions, little questions. If they want to learn about my research, it’s all on my email site, my website GIdoctor.net. And then inquiries as long as they are kept simple, I can handle some. LW@GIdcotor.net.
REBECCA: Wonderful. It has been an absolute pleasure and thank you so much for your time today.
WEINSTOCK: Have a great day
REBECCA: Thank you.