34. Highlighting GI Disorders with Leonard Weinstock, M.D.

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00:00 

Jen Milner 

Hello, and welcome to bendy bodies with the hypermobility MD, where we explore the intersection of health  and hypermobility for dancers and other artistic athletes. This is Jennifer Milner here with co-host Dr. Linda  boosting. Before we introduce today's guest, we'd like first to remind you about how you can help us help you  first subscribe to the bendy bodies podcast and leave us a review. This is helpful for raising awareness about  hypermobility and associated disorders. Second, share the bendy bodies podcast with your friends, family, and  providers. We really appreciate you helping us grow our audience in order to make a meaningful difference.  This podcast is for you. Our very special guest today is Dr. Leonard Weinstock board certified gastroenterologist and president of specialists in gastroenterology and advanced endoscopy center. Dr.  Weinstock is an associate professor of clinical medicine and surgery at Washington university school of  medicine.  

00:01:04 

Jen Milner 

He is a primary investigator at the Sundance research center and the St. Louis pain clinic. Dr. Weinstock has  published more than 135 articles, abstracts, editorials book, chapters, and poster presentations at national  meetings. He is currently researching the role of mast cell activation syndrome, small intestinal bacterial  overgrowth, restless legs syndrome, and the inflammatory condition rosacea Dr. Weinstock, thank you so much  for joining us today. My pleasure. How did you come to develop a special interest in hyper-mobility disorders  and MCAS?  

00:01:57 

Leonard Weinstock 

Well, it's a rabbit hole, as they say, once you start figuring things out, you go deeper and more things become  clear and then you more, and then you get wrapped up in them. I would say that each situation with the EDS and  MCAS came from two particular patients who wound up becoming case reports. Each of them, opened my eyes  to things that I never learned in medical school, GI fellowship, residency, even in practice. I discovered them on  my own in part by, learning, trying to figure out what was wrong with these two individuals. And, one of them  actually told me what MCAS was because she had it. She called me up and wanted to learn more about low dose  naltrexone, which I have expertise in. She said, I have pods and MCAS. I said, what are those? And, basically  those are conditions that hitherto had been relegated to allergists and cardiologists neurologists, but they really  didn't make their way to the gastroenterology literature.  

00:03:18 

Leonard Weinstock 

So, I learned a lot from her and then helped her figure out how to manage SIBO, which had not been connected  and also how to manage, naltrexone. The other one, was a patient who had all kinds of symptoms, but she had  SIBO and, complex regional pain syndrome. In effort to find out why she was having this terrible pain, we  undercovered, the diagnosis of Ehlers-Danlos syndrome, as explaining her, or sleep apnea, basically, OSD the,  loose membranes, that collapse when you're sleeping, leading towards, sleep apnea, and this OSA, then will lead  towards increased inflammation, which I thought had a role in causing her, complex regional pain syndrome and  then treating the sleep disturbance and sleep apnea disturbance, the SIBO, and then giving low dose naltrexone  had helped a lot. Later on, after her case report was published, it became clear that she developed more  symptoms compatible with mast cell activation syndrome.  

00:04:45 

Leonard Weinstock 

Things came around in a circle and started discovering in more and more of my patients. They had the evil triad,  basically EDS and cannabis, and it's pots postural orthostatic tachycardia syndrome.  

00:05:08 

Jen Milner 

That's interesting. You started diving deeper into, people with EDS and researching all of those things that had  kind of come together through all of the I'm trying to uncover, what was this issue and this issue with that one  patient, what GI disorders have you discovered are more prevalent in EDS hyper-mobility spectrum disorder  and MCAS.  

00:05:33 

Leonard Weinstock 

Okay. Wow. Well, first of all, you could say every single GI symptom known to mankind can be a common  problem in all of these patients with all of these syndromes, whether you're talking about difficulty swallowing,  sore lives to start from the top sores in the mouth, burning now, difficulty, chest pain, heartburn, upper  abdominal discomfort, bloating, gas, constipation, diarrhea, and disordered, bowel elimination, as far as  symptoms that covers from top to bottom, as far as syndromes. Well, that's the thing. I always hated the word  syndromes because it just didn't make sense that we had so much of our lives spent in medicine and research.  There were so many smart people, but there were so many conditions that are called syndromes and therefore  the underlying cause was never really known. Well, if you take a bunch of syndromes that you can imagine, like  fibromyalgia syndrome, interstitial cystitis syndrome, irritable bowel syndrome, and you look at these symptoms will, these are symptoms that patients with our friendly, evil triad experience all the time and, they suffer from  these syndromes.  

00:07:09 

Leonard Weinstock 

When you get down to it, you can come up with a common denominator, for many of them and say, okay, all  these syndromes in your body are caused by mast cell activation syndrome. And, or, pots, Ehlers Danlos on the  face of things, you'd say, well, why should a bendy body person, have GI symptoms, or mast cell symptoms or  pats. In fact, if you're coming in from that angle, they do have an increased frequency of those two syndromes.  There is a idea that, mast cell activation syndrome with release of, chemicals that cause growth may actually be  part and parcel of the cause for hyper mobile, EDS with increasing growth of tissues, ligaments of joints, and  attendance in the joints. We get into the trouble of the ultimate, sequelae leading towards the hypermobility. It  may be, that, in fact, MCAS may be at the heart of many patients who have, hyper mobile EDS.  

00:08:31 

Jen Milner 

That is so interesting. That's really interesting. And, and I think that, a lot of times people look at themselves as  hypermobile and say, perhaps I have EDS. Also I might have some of this, and this and the hypermobility or the  EDS is the thing in the middle. The, all the other things seem to them to be offshoots. Rather than saying, no,  these things are all equal or these things are all just as important and need that attention. At least from the people  that I work with on a different side, then in a clinical aspect, they're like I have this, but then I have this and this,  but it's not as big of a deal, but it really is. Dealing with one will absolutely help deal with the others. Like you  said, they all looped together. If they've got these issues, if they got some of these disorders, how would these be  worked up and treated? I know that's a huge question.  

00:09:26 

Leonard Weinstock 

Well, that is a huge question. Well, let me just step back. I gave you a range of symptoms from top to bottom  north to south. But, you have to also then say the syndromes that EDS is associated with, and that would  include, motility disorders, loopy, droopy, connective tissue in the gut leading towards small intestinal bacterial  overgrowth or in the colon, chronic constipation, in patients who have pots who have EDS, they have a higher  frequency of gastrointestinal symptoms. It's probably, in that situation, they also have AMCAS, that's just not  diagnosed. There's a condition called, median arcuate ligament syndrome, which is, upper abdominal pain  syndrome where nothing is found unless you a very special cat scan. It may be for Ehlers Danlos syndrome that  ligaments are pulled down. The tissue pressure is pulled down and it tugs on the, median arguing ligament. The  artery gets trapped by the ligament causing, vascular steel and also, perhaps mast cell activation.  

00:10:56 

Leonard Weinstock 

How do you diagnose these conditions? well, let's just start with the triad. Okay. Of course I'm speaking to the  choir about HSDs and I don't think I need to elucidate that. The EDS, website is wonderful, especially, finding  professionals around the country, the MCAS, you just have to think of a variety of symptoms that are allergic  and inflammatory to stirred saying, how do you explain somebody who has 48 different symptoms? I see these  patients coming in who, check off the review of systems and there are check marks all over the place. How can  somebody conceivably have that? If they went to see another doctor would say, this is so mad at the CISM,  fabrication of illness, but they're actually, there is a validated questionnaire made by Dr. Moldrings on, checking  off the symptoms and coming up with a score to see whether you should suspect a mast cell activation syndrome  of one type or another, basically a release of, mast cell chemicals.  

00:12:22 

Leonard Weinstock 

What you need to do for mast cell activation syndrome is to measure the chemicals that we have available to  make a diagnosis, in that would be things like, prostate gland in D two histamine, both of those require spinning  in a cold centrifuge. So you don't get artificial low values. It a chemical called chromogranin a and tryptase, and  I'll give you my point of view on tryptase. According to Dr. Afrins work of a case series of over 400 patients,  only 15% at an elevated tryptase, and yet the allergists have their own set of criteria. If you don't have, increased  tryptase and, or, anaphylaxis you're out of luck with that diagnosis. They try to make it hard to diagnose  AMCAS. Whereas it's not that hard. If you're a little more liberal, you'll get more patients diagnosed and have  advantage of possibly helping more patients. Of course there are three urine samples that can be done. 

00:13:40 

Jen Milner 

You bring up a great point, though. A lot of it depends on, finding the right doctor, right? not most of the people  that I've worked with have not been diagnosed with EDS or HSD, through a GI specialist. The people who've  worked with you are so fortunate that you've been able to dig deeper and kind of tie those things together. For  those people who don't have access to a doctor, that's helping them find what they need to find out. Maybe do  have some of these conditions. There anything that you would want to share about things that patients could do  on their own or things you'd want them to know things like constipation and bloating or IBS, for example?  

00:14:24 

Leonard Weinstock 

Right. Okay. Well, see if you knew what was wrong with you, let's say you had a diagnosis of EDS and you had  GI symptoms. You could plug that into scholar, Google, which is a wonderful website and come up with  articles. Some of the articles are in full text mode. Some of them are just the, abstract, but if you're just dealing  with the symptoms, then it's tougher. Now. Once again, you say, if they had hypermobility and they had  constipation, could they just plug that into the computer and come up with a differential diagnosis? And I think  the answer is yes, but finding the right doctor is tough. I mean, I've for the last five years delved into MCAS. I  was seeing just tremendous amount of patients, but my, partners in practice don't want to make that diagnosis.  It's just too confusing for them. Once they get that diagnosis on somebody, they're willing, I think, more and  more to turf it off to me to see if I would take on their patient, who sounds like AMCAS patient.  

00:15:40 

Leonard Weinstock 

But it's tough. When you're talking about any one disease that has multiple disciplinary activities, if you will  basically symptoms in many parts of the body, it's very difficult for a specialist to think out of the box and get  away from their, GI docs where they've got reflux problem, do an endoscopy, abdominal pain, do an endoscopy  change bowel habits, do a colonoscopy. I mean, it's, unfortunately people are taught to start staying within their  own box and not looking outside. And that's a big problem. We just don't have a course in med school about  multidisciplinary approaches to things.  

00:16:35 

Jen Milner 

And that's such a great point. And that's something that Dr. Bluestein and I have talked about so many times  when people say what's the one doctor I should go to get my diagnosis, or what's the one place I should go. We  always say, it depends on where you are, but all it takes is one doctor. It could be your rheumatologist. It could  be your GI. It could be a geneticist. It's just finding that one doctor that's willing, like you said, to look outside  the box and to think a little outside the box. That's absolutely true.  

00:17:05 

Leonard Weinstock 

Right. I just saw a patient last week that, her geneticists, said, yeah, you've got EDS hypermobile. And, by the  way, you get a lot of GI symptoms. Maybe you should see Dr. Weinstock to try to work that out. I wound up  seeing her and she was the obvious case that MCAS,  

00:17:28 

Linda Bluestein 

I think part of that too, is that, we learned in medical school how to take a history, but then we get into practice  and we don't have very much time. We really don't do much of taking a history anymore because what really  shocked me as I started to do this more and more is in listening to the patient. Dr. Afrin says this a lot and it  really is true. The patient is telling you what's wrong with them. You just have to listen and take the time.  

00:17:56 

Leonard Weinstock 

The review of systems, for me in med school was very, it was a difficult task to learn all the questions, to spit it  out, to have a patient start talking about one, and then leading on to a five minute discussion of one symptom,  which was not, the reason why they came to the hospital with a pneumonia or whatever. It's a skill that is hard to  learn. And, to this day it's difficult. My, the questionnaire that Dr. Moldrings has is a great thing. I will have the  patients fill it out, rate the severity, but, even then going on to those things, it can wind up going with a long, explanation. That said it, as Linda said, you only have a certain amount of time in standard insurance-based  medicine to see a patient and then get on and get on to the next it's challenging.  

00:19:01 

Jen Milner 

It is. Knowing the questions to ask and as a patient, knowing what information to give can be really tricky.  Absolutely. There are some symptoms that we've talked about, like constipation bloating that I think a lot of  people are aware of and already understand. There's a, there's a few things that come up consistently in people  with hEDS or other connective tissue disorders that may not be as well understood though. Can you just talk for  a second about, gastro-paresis and SIBO as well? I think those are two that are serious and should be discussed  and may not be on everyone's radar.  

00:19:38 

Leonard Weinstock 

Okay. Gastroparesis is delayed emptying of the food from the stomach, and you can see it in patients who have  MCAS, but more often in postural orthostatic tachycardia syndrome, since it's, a case of autonomic dysfunction  and, parasympathetic or the vagal tone is responsible for the contraction waves to allow food to exit from the  stomach. I've seen some very severe cases of it. I've had several patients on a good, general feeding tubes, and it  doesn't always, respond to medications and it's tough, you can use Mestinon, which is a, vagal, activator. There  aren't many great motility medicines. There was Prucalopride that came out recently that has some activity  there, but if you have such a sympathetic imbalance, it's hard to override it. So, you can only do so much, you  can change the diet. You could, ultimately, feed somebody liquids because usually liquids empty out of the  stomach a lot better than salads.  

00:21:02 

Leonard Weinstock 

So, that's some of the things, and then there are patients who have nausea, you think it's gastroparesis, but in  fact, they're emptying the food too fast. They fill up the duodenoscope too fast and then they get expansion of  their small intestine and nausea from that. There's yet one other condition that you have to think about when  you're working up. Somebody for delayed gastric emptying is could they have a superior mesenteric artery  syndrome where they've lost weight, they've lost fat around the artery and the artery complaint, basically  contracts, or puts pressure on the duty Dean and ships it off.  

00:21:48 

Jen Milner 

Do you see, that's interesting because I've had two different dancers, somewhere on the hypermobility spectrum  who have both had a superior mesenteric artery syndrome. Right. SMAS and I have wondered if there was a link  between those or not, but never had anybody mentioned that together. So that's really interesting. The SIBO, can  you circle back to that really quick? Cause that's what I don't think is on a lot of radars.  

00:22:15 

Leonard Weinstock 

Absolutely. It's there are many great sites to learn about SIBOinfo.com, but when you're talking about small  intestinal, bacterial overgrowth, you're dealing with a syndrome. There are many different causes over 40  different causes for small intestinal bacterial overgrowth. When we look at the patients, they can have it for  several different reasons. They can have the loopy droopy, small intestine, and then it's hard to get around, this  small intestine to basically you get basically a sewer with regards to the small intestine. The visceroptosis, the  sinking of the small bowel. When you stand up, you just have a situation where it's hard for the contraction to  move things up, but there are other causes in, EDS to cause small intestine, bacterial overgrowth, there's  defective collagen synthesis, there's a deficiency of a protein, and also autonomic dysfunction. So, for losing  contractility, the small bowel, we'll again, get some, situation where we just have this bacteria sitting around, not  getting cleared with good old, migrating motor complex waves at, to do a sweeper wave, to clean out the small  bowel.  

00:23:48 

Leonard Weinstock 

What happens is the small bowel bacteria bind to the small intestine lining. It can cause inflammation. Of course  it can cause gas because you get, carbohydrates that are poorly digested coming down, sits in the small intestine,  or the sugars sit there. The bacteria start consuming it causing, gas, production, bloating, distension. If it's  hydrogen, then it's usually diarrhea. If it's methane production, it's usually constipation. 

00:24:21 

Linda Bluestein 

I have a question about the, with SIBO and the breath test. How accurate is that.  

00:24:27 

Leonard Weinstock 

Great question? so it's in the 70% accuracy, it's nothing is perfect, because, direct measurement by putting a tube  down into the small intestine res contamination. The other issue is that you may only be sampling the upper  GGM, but the problem is the uppers ileum, and you're not getting down far enough. But, the studies where  people have had too many bacteria in the duodenum, which is the first part of the small intestine beyond the  stomach, if they've got bacterial overgrowth, they've got severe symptomatology, and it does correlate well with  the aspiration and the breath test.  

00:25:17 

Linda Bluestein 

If the breath test is negative, but you strongly suspect SIBO, do you go ahead and treat with antibiotics or do  you, do further investigation or how do you approach that? So,  

00:25:30 

Leonard Weinstock 

As far as bloating, there are many causes for bloating. People always assume, well, it's bacterial, indigestion and  production of gas, but, in MCAS, those patients can have that spontaneous bloating, not related to eating or  sometimes related to eating as well because the mediators cause a paralysis of those small bowel with the  stanchion. So that's one thing that can occur. We did look at a study of, 139 patients who had MCAS and breath  tests on them and compared them to controls. 30% of the AMCAS patients had typical SIBOE with hydrogen  elevation versus 10% of controls. One out of 30 had a false positive breath test, you might say. A number of the,  mast cell patients also had elevations of their methane levels. So, certainly, slow movement, in emptiness can  lead towards bacterial overgrowth, but if they don't have it, think about the treating the underlying mast cell  activation syndrome.  

00:26:50 

Leonard Weinstock 

So, should you treat a patient, who's got a negative breath as well, if they give you additional symptomatology  to make you think, let's say there's hydrogen, sulfide, or other bacteria in there with a terrible odor, quick  response to eating, 30 to 60 minutes after eating, then you could consider, giving, empirical therapy.  

00:27:19 

Jen Milner 

You had mentioned, earlier a relationship between, median arcuate ligament syndrome and AMCAS would you  just circle back to that and explain more on that?  

00:27:31 

Leonard Weinstock 

Sure. There are patients who are the AMCAS and pots who are then discovered, to have, a median arcuate  ligament, syndrome on basically a breath hold deep expiration breath, hold angiogram, cat scan. It's angio cat  scan, and, when these patients have undergone the appropriate surgery, their mast cell symptoms improve now  exactly why we really don't know and their pots can improve as well. It used to be thought, oh, this is just  abdominal pain, upper abdominal pain. You may or may not hear, abdominal Bruie when you listen with your  stethoscope and the upper abdomen. But, now we know so much more it's, associated with the evil triad.  

00:28:31 

Linda Bluestein 

You have written extensively about low dose naltrexone and various different applications. Can you talk about  low dose naltrexone what patients might want to know about that particular treatment?  

00:28:45 

Leonard Weinstock 

First of all, I don't think I could practice without it, and I've been using it since 2005, and I've been using it for  conditions that are, painful, including, EDS, joint pain auto-immune conditions or inflammatory conditions. And, what it does, it's basically tricking the body to make more endorphins. High dose naltrexone, which has  been out since 1984 for prevention of, narcotic and alcohol abuse, was discovered very early on to work in a  totally different way when low doses were used. It was found out that when you use a low dose of it, one to 4.5  milligrams, as opposed to 50 to a hundred milligrams, something unique happens. Basically it only, stays in our  body for six hours. During that six hours, it bind to the nerve cells, endorphin cells, endocrine cells that basically  produce, endorphins and enkephalins, and basically what is happening, during that time, the body senses, it's not  getting enough of its normal circulating endorphins.  

00:30:08 

Leonard Weinstock 

It's starting to build more of the receptors and starting to build up more endorphins, but can't release it because  it's being blocked. When the drug goes out and is excreted in the urine, then our cells that produce endorphins,  give us a big burst of endorphins, and we have more receptors for the endorphin so that they work better. And so  endorphins by themselves, reduce pain. They also attach to T and B cells, lymphocytes that are responsible for  causing inflammation. When we have a particular disease, like let's say, sarcoidosis or mast cell activation  syndrome, where there's too much inflammation going on, we can decrease it by, changing the T and B cell  activation. The T-cells are wrapped up with mast cell activation. There they're these micro particles that come  from T-cells that activate the mast cell. By, tamping down on the T-cell activation, mast cell activation  syndrome can get better.  

00:31:23 

Leonard Weinstock 

I looked at 116 patients treated who had, AMCAS treated with LDN low dose naltrexone, and 60% found  improvement in a whole variety of symptoms. 20% could in, tolerated, because maybe the endorphin storm or  just general intolerance of medications by MCAS patients in 20%, it just didn't work. To have a drug that's more  than 50% effective in MCAS is significant. Absolutely sarcoidosis was a amazing case that led to a case report  where, these, nodules, low density, lesions in the spleen, and the liver went away entirely with LDN and the  patient's main symptoms of severe fatigue, was dramatically improved. That was a case of sarcoidosis outside of  the lung and the new we've had a couple of cases where pulmonary sarcoidosis patients have had significant  improvement as well.  

00:32:33 

Linda Bluestein 

LDN is absolutely one of my, preferred things as, and I don't know what would happen if I couldn't prescribe  that either. So it's, I, I hear you. I totally agree. What other therapies do you frequently recommend?  

00:32:49 

Leonard Weinstock 

In, EDS, the PEA and the LDN in MCAS, your ground, steps, our building blocks would be anti-histamines H1  and H2 blockers. Now for the H two blocker, we primarily have, famotidine. Unfortunately, Zantec has gone  from the market because they used to work, pretty well as well. There's a and a host of the, Allegra,  fexofenadine, which are the H one blockers, the non-sedating H one blockers, and each of those drugs should be  given twice a day. Sometimes patients take it three times a day because it fades off. Then, I love vitamin C and  D who couldn't benefit from C and D, but sometimes this C patients, people are taking C have trouble. I liked  the sustained release C and then actually, Dr. Moldrings, one of the experts and discovers of MCAS feels that  we should be trying 500 of vitamin C as opposed to the thousand, cause there's a sweet spot that may be out  there, for some, for many patients.  

00:34:28 

Leonard Weinstock 

I, again very quickly will, try LDN for patients with MCAS and, of course, certain, can be helpful with  stabilizing the mast cell as well. So that's step one, basically. The biggest step is also saying to the patient, you  got to look for your triggers and diet plays a dramatic role in MCAS. So, you need to try gluten-free dairy-free  used free and look for histamine foods that, could be exacerbating the problem.  

00:35:09 

Linda Bluestein 

That makes sense. And speaking of Dr. Moldrings, you wrote a paper with, published a paper with doctors,  Afrin and Moldrings called COVID-19 hyper inflammation and post COVID-19 illness may be rooted in mast 

Page 7 of 11 

Episodes have been transcribed to improve accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us as soon as possible. 

Transcript for Bendy Bodies Podcast, Episode 34: Highlighting GI Disorders with Leonard Weinstock, MD 

cell activation syndrome. This was published fairly recently. Could you talk about what you would like for  people to know about COVID-19 and hyper inflammation?  

00:35:35 

Leonard Weinstock 

Okay. Well, when you look at those cells that are involved in, somebody gets a bad case of COVID. They have  this wild cytokine storm that goes on that destroys their organs, and it's not necessarily the virus itself doing it's  the reaction by our bodies to, the virus creating the inflammation. There's a cascade that goes down on people  where the variety of, cytokines, which are inflammatory chemicals will destroy our body. The, also there's a  hyper, coagulability, which can cause heart attacks and, pulmonary embolism and so, and strokes. When we  started thinking about this, and this was actually driven a lot by Dr. Afrin, he said, a lot of the symptoms that  patients are having with COVID and post COVID syndrome, they just really sound like a patient with severe  MCAS. Basically it was his philosophy that, if you've got a N diagnosed unrecognized, untreated MCAS patient  of which we have a lot in our population, possibly up to 10 to 17%, then when you get a cytokine storm and  you're activating the extremely, mutated, hyperactive mast cell that this explodes and creates a continued and  exaggerated cytokine storm.  

00:37:22 

Leonard Weinstock 

We looked at our own patients and, we have a research study group, a study group of man cell experts, we've,  asked, well, were any of your patients getting very ill, seriously ill or dying? The ones that you're treating and  the answer was no. It really started coming, to our philosophy, coming to a philosophy that if we could, look at  our own patient base, that if we could protect the bad patients that we have now who are sick, maybe this will  apply to other people in the country. And, when we looked at all the symptoms from head toe that a patient  experience and compared them to what the symptoms were that patients would COVID, acute and chronic have  the overlap was dramatic. So, so many of the symptoms that these poor patients were having were the same as  what we see with patients who have MCAS.  

00:38:30 

Linda Bluestein 

Okay. I think that, so many of the treatments for MCAS, I know the whole debate about, do you create a bigger  basket or a smaller basket for MCAS, but so many of therapies are so safe that it seems logical to say, well, you  can, whether it's because you have COVID or because you potentially have, MCAS, but you don't have COVID  that in many cases, it's worth a try because, we're not talking about some of the, more toxic types of treatments,  

00:39:03 

Leonard Weinstock 

Right. They're being studied, and they are absolutely being studied. And, one of our members talked about his  experiences with the high dose vitamin D very exciting information, how that dramatically help people. There  clearly is if you're low in vitamin D in general, your chances of getting out of the hospital are much lower than  if you have high vitamin D levels. So, there was a study looking at, and published in the GI journal about using  high dose. Showing an improvement in, hospital survival.  

00:39:41 

Linda Bluestein 

Speaking of promoting actually, would you be willing to briefly comment on famotidine versus PPIs? Because I  feel like proton pump inhibitors are prescribed so readily. Many patients go on them and then they never really  get addressed again about whether or not they could wean off and, they can interfere with nutrient absorption,  right. And, and cause some other problems. Would you be willing to talk about that ?  

00:40:09 

Leonard Weinstock 

Sure. Well, it's, when you've got a patient and you're doing an endoscopy and they've got an ulcerated esophagus  and they've got scar tissue in narrowing, and they're really basically, stage four of a, acid condition, there's really  no other choice other than surgery to fix a hiatus hernia, then to give a proton pump inhibitor. If somebody has  mild to moderate heartburn, it really is important for the doctor to try as much as possible to keep it simple. That  would be working on, dietary and behavioral modifications and trying to start with the H two blocker, because  it's a lot easier to take somebody ultimately off of H two blocker than it is a proton pump inhibitor. You had this  hyper acid phenomenon when you take somebody off of proton pump inhibitor. And, whether it's because they've built more pumps. When basically the antagonist goes away, the PPI goes away, then they just start  pumping out acid like crazy.  

00:41:26 

Leonard Weinstock 

So it's tough. It's easy to write the prescription, but tougher to deal the consequences at far as, the real problems,  if you could come up with, 10 different things, that PPIs could do for you. I don't see that much, in terms of B12  deficiency or malabsorption, most of them, allows enough acid to come in to digest meat, and not get into  gestion because of that, or, iron deficiency or B12 deficiency. You're not shouting iron and the acid down  completely you're diminishing it. You may diminish it enough that your risk for, C difficile increases, you may  be doing enough to partition so that you're allowing excess bacteria to be in your stomach. If you're  regurgitating all the way up into the highest savages, your risk for infection increases for like pneumonia. The  other even, so the calcium is a consideration as well. So that's a concern.  

00:42:46 

Leonard Weinstock 

There's calcium citrate, which you could take with your PPI to assure that your calcium will get absorbed, but  even osteopetrosis there's some debate still about it. Yet I do believe that there's increased, risk of fractures.  There are studies, for and against that.  

00:43:10 

Linda Bluestein 

Okay. And, and what do you recommend that patients do if they have difficulty finding a gastroenterologist who  understands complex and frequently missed conditions like Ehlers Danlos syndrome is mast cell activation  syndrome and some of the other things that we've been discussing.  

00:43:27 

Leonard Weinstock 

Okay. Well, you could try to educate your current gastroenterologist because, I wrote a article along with Dr.  Moldings Afrin, Dr. Pais and Dr. Rezai about M gas, basically called, and CAS primer for the  gastroenterologist. I initiated the project after seeing and reading in our own GI journal pots, a primer for the  gastroenterologists. And, and there's some recent studies that were published on, a review of EDS by Dr. On  Ehlers-Danlos and GI symptoms. You could try to bring those into your doctor and see if they've have access to  them on their computer, or just print it out on your own. We're keep on looking around now. There's some  allergists who ranged from, I don't believe it exists too. I won't make the diagnosis unless the tryptase is high  too.. An allergist may be helpful for MCAS the EDS.  

00:44:58 

Leonard Weinstock 

I'd say, if you look for physical therapists, they're the ones to tell you which doctors are in tune with EDS. Some  of those doctors are going to be aware of pots and MCAS, but it's tough. I will say it's tough and it's a difficult  problem, and it's not going to get better until medical school changes.  

00:45:27 

Linda Bluestein 

Okay. And, and we will have a link to those articles in our show notes also to make it a little easier for people to  find specific things that Dr. Weinstock has mentioned today. Could you, as we're wrapping up here, would you  be able to let us know, what patients you're able to see and treat.  

00:45:46 

Leonard Weinstock 

Me personally? so, first of all, because a, you have a Missouri license, I only will see Missouri patients. I, I will  see patients, so if they just have pots, I would prefer that they see cardiologist and neurologist. There are,  autonomic neurologists around, they specialize in autonomic disease. There are some cardiologists who are on  board with treating pots. Because basically the literature for pods has been in the cardiac and neurology  literature all this time. EDS patients only, if they don't have symptoms in other parts of the body, I think,  basically going to pain specialists, pain, if every, buddy had, access, to doctors like you, or, in Providence,  Rhode Island where there's a great doctor, life would be different if you could clone yourself. That'd be great.  Then, yeah, so I'm seeing MCAS patients if they have predominant, GI symptoms. 

00:47:13 

Linda Bluestein 

Okay. That makes sense. And, and could you let people know where they can find you? And is there anything  else that we should have asked you about,  

00:47:21 

Leonard Weinstock 

Okay, well, GIdoctor.net, I've got a lot of information and, I, my articles there, so you may find, some of the  articles we talked about full length, and, what to do, I mean, try and find. So, also for, mast cell activation  syndrome, T M as for a cure tmsforacure.org has a lot of good things, on it. I think it's really important that you  look for resources, which you've probably made people avail, made aware of on surgical management of EDS  and, whether it's, the mast cells, that you have to deal with at the time of the sedation. And that's really  important. If you have a cross over with EDS and MCAS, you gotta make sure that you're getting intravenous  pre sedation therapy to reduce complications of, the sedatives. There's, you've made some wonderful handouts  for the operative, addressing operative problems and including, intubation and, how the surgeon stitches you up.  

00:48:56 

Linda Bluestein 

Definitely not, enough awareness in that arena. For sure. Thank you for mentioning that it is a great handout.  Well, good. Well, well, Dr. Weinstock, I can't thank you enough for coming on the podcast today. We've really  enjoyed chatting with you. And, it's been really a great conversation. I'm sure a lot of people are going to learn a  lot.  

00:49:21 

Leonard Weinstock 

My pleasure. Thank you so much. Yes,  

00:49:23 

Linda Bluestein 

Absolutely. You all have been listening to bendy bodies with the hypermobility MD today. We have been  speaking with Dr. Leonard Weinstock board certified gastroenterologist and primary investigator at the  Sundance research center and the St. Louis pain clinic. Dr. Weinstock, thank you again. Very much for taking  the time to come on the bendy bodies podcast and sharing your expertise with us today. My pleasure, thank you  for joining us for this episode of bendy bodies with hypermobility MD, where we explore the intersection of  health and hypermobility for dancers and other artistic athletes. Please leave us a review on your favorite  podcast player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the bendy  bodies, YouTube channel as well. Thank you for helping us spread the word about hypermobility at associated  conditions. Visit our website, www.bendybodies.org. For more information, for a limited time, you could win an autographed copy of the popular textbook disjointed navigating the and management of hyper mobile Ehlers  Danlos syndrome and hypermobility spectrum disorders just by sharing what you love about the bendy bodies  podcast on Instagram, tag us at bendy underscore bodies and on Facebook at bendy bodies podcast.  

00:50:45 

Linda Bluestein 

The thoughts and opinions expressed on this podcast are solely of the co-hosts and their guests. They do not  necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute  medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for general  education only, and does not constitute medical advice. Your own individual situation may vary, do not make  any changes without first seeking your own individual care from your physician. We'll catch you next time on  the bendy bodies podcast.