Highlighting GI Disorders with Leonard Weinstock, M.D.

[00:11] Jennifer 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 Bluestein. 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.
[00:49] Our very special guest today is Dr. Leonard B. 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. 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 leg syndrome, and the inflammatory condition rosacea. Dr. Weinstock, thank you so much for joining us today.

[02:02] Leonard Weinstock, M.D.: My pleasure.

[02:03] Jennifer Milner: How did you come to develop a special interest in hypermobility disorders and MCAS?

[02:09] Leonard Weinstock, M.D.: Well, it's a rabbit hole, as they say. Once you start figuring things out, you go deeper and deeper, and more things become clear, 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, or even in practice. So I discovered them on my own, in part by trying to figure out what was wrong with these two individuals.
[02:56] 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, and she said, "I have POTS and MCAS." I said, "What are those?" And basically those are conditions that hitherto had been relegated to allergists and cardiologists and neurologists, but they really didn't make their way to the gastroenterology literature. 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.
[03:38] And then the other one was a patient who had all kinds of symptoms, but she had SIBO and complex regional pain syndrome. In an effort to find out why she was having this terrible pain, we uncovered the diagnosis of Ehlers-Danlos syndrome as explaining her sleep apnea — basically OSA, the loose membranes that collapse when you're sleeping, leading towards sleep apnea. And this OSA then leads towards increased inflammation, which I thought had a role in causing her complex regional pain syndrome. Treating the sleep apnea, the SIBO, and then giving low-dose naltrexone helped a lot. Then later on, after her case report was published, it became clear that she developed more symptoms compatible with mast cell activation syndrome. So things came around in a circle, and I started discovering in more and more of my patients that they had the evil triad.

[05:07] Jennifer Milner: Dun dun dun! Sure.

[05:10] Leonard Weinstock, M.D.: Basically, it's EDS, it's MCAS, and it's POTS — Postural Orthostatic Tachycardia Syndrome.

[05:19] Jennifer Milner: That's interesting. So when you started diving deeper into people with EDS and researching all of those things that had come together through trying to uncover what was this issue and this issue and this issue with that one patient, what GI disorders have you discovered are more prevalent in EDS, hypermobility spectrum disorder, and MCAS?

[05:46] Leonard Weinstock, M.D.: 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 — let's start from the top — sores in the mouth, burning mouth, difficulty swallowing, chest pain, heartburn, upper abdominal discomfort, bloating, gas, constipation, diarrhea, and disordered bowel elimination. As far as symptoms, that covers from top to bottom.
[06:25] As far as syndromes — 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, and 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 — fibromyalgia syndrome, interstitial cystitis syndrome, irritable bowel syndrome — and you look at these symptoms, these are symptoms that patients with our friendly evil triad experience all the time, and they suffer from these syndromes. And when you get down to it, you can come up with a common denominator for many of them and say, all these syndromes in your body are caused by mast cell activation syndrome and/or POTS and Ehlers-Danlos.
So on the face of things, you'd say, well, why should a bendy body person have GI symptoms or mast cell symptoms or POTS? But in fact, they do have an increased frequency of those two syndromes. There is an idea that mast cell activation syndrome — with release of chemicals that cause growth — may actually be part and parcel of the cause for hypermobile EDS, with increasing growth of tissues, of ligaments, of joints, and tendons in the joints. We get into the trouble of the ultimate sequelae leading towards the hypermobility. So it may be that MCAS is at the heart of many patients who have hypermobile EDS.

[08:43] Jennifer Milner: That is so interesting. And I think that a lot of times people look at themselves as hypermobile and say perhaps they have EDS, and also think they might have some of this, this, and this — and the hypermobility or the EDS is the thing in the middle and 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 than in a clinical aspect, they're like, "I have this, but then I also have this and this, but it's not as big of a deal." But it really is. And dealing with one will absolutely help deal with the others. Like you said, they all sort of loop together.
[09:28] So if they've got these issues, if they've got some of these disorders, how would these be worked up and treated? I know that's a huge question.

[09:37] Leonard Weinstock, M.D.: Well, that is a huge question. Let me just step back. I gave you a range of symptoms from top to bottom, north to south, but you also have to say, what are 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 and EDS, they have a higher frequency of gastrointestinal symptoms — but it's probable that in that situation they also have MCAS that's just not diagnosed.
[10:29] There's a condition called median arcuate ligament syndrome, which is an upper abdominal pain syndrome where nothing is found unless you do a very special CAT scan. And it may be that in Ehlers-Danlos syndrome the ligaments are pulled down, the tissue pressure is pulled down, and it tugs on the median arcuate ligament, and the artery gets trapped by that ligament, causing vascular steal and also perhaps mast cell activation.
[11:08] So how do you diagnose these conditions? Well, let's just start with the triad. Of course, I'm speaking to the choir about hEDS — I don't think I need to elucidate that. But the EDS website is wonderful, especially for finding professionals around the country. For MCAS, you just have to think of a variety of symptoms that are allergic and inflammatory and start asking, how do you explain somebody who has 48 different symptoms? I see these patients coming in who check off their review of systems, and there are checkmarks all over the place. How can somebody conceivably have that? If they went to see another doctor, they would say this is somaticism, fabrication of illness. But in fact there is a validated questionnaire made by Dr. Mulderings 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.
[12:34] But then what you need to do for mast cell activation syndrome is to measure the chemicals that we have available to make a diagnosis, and that would be things like prostaglandin D2 and histamine. Both of those require spinning in a cold centrifuge so you don't get artificially low values. There's a chemical called chromogranin A and tryptase. I'll give you my point of view on tryptase: according to Dr. Afrin's work in a case series of over 400 patients, only 15% had an elevated tryptase. And yet the allergists have their own set of criteria, and if you don't have an increased tryptase and/or anaphylaxis, you're out of luck with that diagnosis. So they try to make it hard to diagnose MCAS, whereas it's not that hard. If you're a little more liberal, you'll get more patients diagnosed and have the advantage of possibly helping more patients. And then of course there are three urine samples that can be done.

[13:52] Jennifer Milner: You bring up a great point though. A lot of it depends on finding the right doctor, right? Most of the people that I've worked with have not been diagnosed with EDS or HSD through a GI specialist. So the people who've worked with you are so fortunate that you've been able to dig deeper and 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, but maybe do have some of these conditions, is there anything that you would want to share about things that patients could do on their own, or things you would want them to know — things like constipation and bloating or IBS, for example?

[14:35] Leonard Weinstock, M.D.: Right. 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 Google Scholar, 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.
[15:03] 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, for the last five years I've delved into MCAS, and I was seeing a 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 hand it off to me to see if I'll take on their patient who sounds like an MCAS patient.
[15:51] But it's tough, and when you're talking about any one disease that has multiple disciplinary activities — basically symptoms in many parts of the body — it's very difficult for a specialist to think outside the box and get away from their GI box where they've got a reflux problem: do an endoscopy. Abdominal pain: do an endoscopy. Change in bowel habits: do a colonoscopy. Unfortunately, people are taught to stay within their own box and not look outside, and that's a big problem. We just don't have a course in medical school about multidisciplinary approaches.

[16:47] Jennifer Milner: And that's such a great point. 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 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 who's willing, like you said, to look outside the box a little bit. That's absolutely true, right?

[17:17] Leonard Weinstock, M.D.: I just saw a patient last week whose geneticist said, "Yeah, you've got hypermobile EDS, and by the way, you have a lot of GI symptoms. Maybe you should see Dr. Weinstock to try to work that out." And I wound up seeing her, and yeah, she was an obvious case of MCAS.

[17:35] Dr. 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, so we really don't do much history-taking anymore. What really shocked me as I started doing this more and more is that 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.

[18:06] Leonard Weinstock, M.D.: The review of systems — for me in medical school, it was a difficult task to learn all the questions, to spit them 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 pneumonia or whatever. It's a skill that is hard to learn. And to this day, it's difficult. The questionnaire that Dr. Mulderings has is a great thing. I will have patients fill it out and rate the severity. But even then, going through those things can wind up leading to a long explanation. And as Linda said, you only have a certain amount of time in standard insurance-based medicine to see a patient and then move on to the next. It's challenging.

[19:12] Jennifer Milner: It is. And knowing the questions to ask, and as a patient, knowing what information to give, can be really tricky.

[19:20] Leonard Weinstock, M.D.: Absolutely.

[19:21] Jennifer Milner: There are some symptoms that we've talked about — like constipation and bloating — that I think a lot of people are aware of and sort of already understand. There are 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 talk for a moment about gastroparesis and SIBO? I think those are two that are serious and should be discussed and may not be on everyone's radar.

[19:50] Leonard Weinstock, M.D.: Gastroparesis is delayed emptying of food from the stomach. 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. The parasympathetic, or 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 get jejunal feeding tubes, and it doesn't always respond to medications. It's tough. You can use mestinon, which is a vagal activator. There aren't many great motility medicines. There's prucalopride that came out recently that has some activity there. But if you have such a sympathetic imbalance, it's hard to override it. You can change the diet; you could ultimately feed somebody liquids, because liquids usually empty out of the stomach a lot better than solids.
[21:18] 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 duodenum too fast, and then they get expansion of their small intestine and nausea from that. And then there's yet one other condition to think about when you're working up somebody for delayed gastric emptying: could they have Superior Mesenteric Artery Syndrome, where they've lost weight, they've lost fat around the artery, and the artery basically puts pressure on the duodenum and shuts it off?

[22:01] Jennifer Milner: That's interesting — I've had two different dancers somewhere on the hypermobility spectrum who have both had Superior Mesenteric Artery Syndrome, SMAS. And I wondered if there was a link, but never had anybody mention that together. So that's really interesting. Can you circle back to SIBO really quick? Because that's one I don't think is on a lot of radars.

[22:27] Leonard Weinstock, M.D.: Absolutely. There are many great sites to learn about SIBO — siboinfo.com is one. But when you talk 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 hEDS 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 the small intestine — you basically get a sewer situation with regards to the small intestine. The viscerostasis, the sinking of the small bowel when you stand up, creates a situation where it's hard for contraction to move things along. But there are other causes in EDS for small intestinal bacterial overgrowth: defective collagen synthesis, deficiency of certain proteins, and also autonomic dysfunction. So if we're losing contractility, the small bowel will again get a sump situation where bacteria just sit around not getting cleared by the migrating motor complex waves at night — the sweeper wave that cleans out the small bowel.
[24:00] What happens is the small bowel bacteria bind to the small intestine lining and can cause inflammation. And of course it causes gas, because you get carbohydrates that are poorly digested coming down, sitting in the small intestine — the sugars sit there and the bacteria start consuming them, causing gas production, bloating, and distension. If it's hydrogen, then it's usually diarrhea. And if it's methane production, it's usually constipation.

[24:33] Dr. Linda Bluestein: I have a question about SIBO and the breath test. How accurate is that?

[24:39] Leonard Weinstock, M.D.: Great question. It's in the 70% accuracy range. Nothing is perfect, because direct measurement by putting a tube down into the small intestine risks contamination. And then the other issue is that you may only be sampling the upper jejunum, but the problem is in the upper ileum, so you're not getting down far enough. But in 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.

[25:23] Dr. Linda Bluestein: And 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? How do you approach that usually?

[25:42] Leonard Weinstock, M.D.: As far as bloating, there are many causes. People always assume it's bacterial indigestion and production of gas, but in MCAS, patients can have a spontaneous bloating not related to eating — or sometimes related to eating as well — because the mediators cause a paralysis of the small bowel with distension. We did look at a study of 139 patients who had MCAS, did breath tests on them, and compared them to controls. Thirty percent of the MCAS patients had typical SIBO with hydrogen elevation versus 10% of controls. And a number of the mast cell patients also had elevations of their methane levels. So certainly slow movement in MCAS can lead towards bacterial overgrowth.
[26:54] But if they don't have it, think about treating the underlying mast cell activation syndrome. Should you treat a patient who's got a negative breath test? 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, or a quick response to eating, 30 to 60 minutes after eating — then you could consider giving empirical therapy.

[28:32] Jennifer Milner: You had mentioned earlier a relationship between MALS — median arcuate ligament syndrome — and MCAS. Would you circle back to that and explain a little more?

[28:43] Leonard Weinstock, M.D.: Sure. There are patients who have MCAS and POTS who are then discovered to have median arcuate ligament syndrome on a breath-hold, deep-expiration angiogram CAT scan — basically an angio-CAT scan. When these patients have undergone the appropriate surgery, their mast cell symptoms improve. Exactly why, we really don't know. And then their POTS can improve as well. It used to be thought, "Oh, this is just upper abdominal pain." You may or may not hear an abdominal bruit when you listen with your stethoscope in the upper abdomen. But now we know so much more. It's associated with the evil triad.

[29:36] Dr. Linda Bluestein: You have written extensively about low-dose naltrexone and various different applications. Can you talk about low-dose naltrexone a little bit — what patients might want to know about that particular treatment?

[29:58] Leonard Weinstock, M.D.: First of all, I don't think I could practice without it, and I've been using it since 2005. I've been using it for conditions that are painful, including EDS, joint pain, autoimmune conditions, and inflammatory conditions. What it does is basically trick the body into making 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. When you use a low dose — 1 to 4.5 milligrams as opposed to 50 to 100 milligrams — something unique happens. It only stays in our body for about six hours, and during that time it binds to the nerve cells, endorphin cells, and endocrine cells that produce endorphins and enkephalin. The body senses it's not getting enough of its normal circulating endorphins, so it starts to build more receptors and starts to build up more endorphins — but can't release them because they're being blocked. Then when the drug is excreted in the urine, the cells that produce endorphins give us a big burst, and we have more receptors for the endorphins so that they work better.
[31:46] 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 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 are microparticles that come from T cells that activate the mast cell, and by tamping down on the T cell activation, mast cell activation syndrome can get better. I looked at 116 patients who had MCAS treated with LDN, and 60% found improvement in a whole variety of symptoms. About 20% couldn't tolerate it — maybe because of the endorphin surge, or just general intolerance of medications by MCAS patients — and 20% it just didn't work. But to have a drug that's more than 50% effective in MCAS is significant.

[33:09] Jennifer Milner: Absolutely.

[33:10] Leonard Weinstock, M.D.: Sarcoidosis was an 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 symptom of severe fatigue was dramatically improved. That was a case of sarcoidosis outside of the lung. And then we've had a couple of cases where pulmonary sarcoidosis patients have had significant improvement as well.

[33:46] Dr. Linda Bluestein: LDN is absolutely one of my preferred treatments as well, and I don't know what I would do if I couldn't prescribe it. I totally agree. What other therapies do you frequently recommend?

[34:02] Leonard Weinstock, M.D.: So in EDS, PEA and LDN. In MCAS, your ground steps or building blocks would be antihistamines — H1 and H2 blockers. For the H2 blocker, we primarily have famotidine. You can use cimetidine, but it has more drug interactions. And then there's nizatidine, which is just harder to find. Unfortunately, Zantac is gone from the market because that used to work pretty well as well. And then there's loratadine and a host of others — Allegra, fexofenadine — which are the non-sedating H1 blockers. Each of those drugs should be given twice a day. Sometimes patients take it three times a day because it fades off.
[35:06] Then I love vitamin C and D. Who couldn't benefit from C and D? Well, sometimes people taking C have trouble with it, so I like the sustained-release C. And actually Dr. Mulderings — one of the experts and discoverers of MCAS — feels that we should be trying 500 mg of vitamin C as opposed to 1,000, because there may be a sweet spot for many patients. I also very quickly will try LDN for patients with MCAS. And quercetin can be helpful in stabilizing the mast cell as well. So that's step one, basically.
[36:00] And then the biggest step is also saying to the patient, you have to look for your triggers, and diet plays a dramatic role in MCAS. You need to try gluten-free, dairy-free, yeast-free, and look for histamine foods that could be exacerbating the problem.

[36:17] Dr. Linda Bluestein: That makes sense. And speaking of Dr. Mulderings, you published a paper with Drs. Afrin and Mulderings called "COVID-19 Hyperinflammation and Post-COVID-19 Illness May Be Rooted in Mast Cell Activation Syndrome." This was published fairly recently. Could you talk a little bit about what you would like people to know about COVID-19 and hyperinflammation?

[36:48] Leonard Weinstock, M.D.: Well, when you look at all the cells that are involved and somebody gets a bad case of COVID, they have this wild cytokine storm that goes on and destroys their organs. And it's not necessarily the virus itself doing it — it's the reaction by our bodies to the virus creating the inflammation. There's a cascade where the variety of cytokines, which are inflammatory chemicals, will destroy our body. There's also hypercoagulability, which can cause heart attacks, pulmonary embolism, and strokes.
[37:38] When we started thinking about this — and this was driven a lot by Dr. Afrin — he said a lot of the symptoms that patients are having with COVID and post-COVID syndrome really sound like a patient with severe MCAS. Basically, his philosophy was that if you've got an undiagnosed, 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, you're activating the extremely mutated, hyperactive mast cell, and it explodes and creates a continued and exaggerated cytokine storm.
[38:35] When we looked at our own patients — we have a research study group of mast cell experts — we asked, were any of your patients getting very seriously ill or dying, the ones that you're treating? And the answer was no. So we started developing a philosophy that if we could look at our own patient base, that if we could protect those who are currently sick, maybe this will apply to other people in the country. And when we looked at all the symptoms from head to toe that a patient experienced and compared them to what the symptoms were that patients with acute and chronic COVID have, the overlap was dramatic. So many of the symptoms that these poor patients were having were the same as what we see with patients who have MCAS.

[39:43] Dr. Linda Bluestein: And I think that so many of the treatments for MCAS — I know the whole debate about whether you create a bigger basket or a smaller basket for the MCAS diagnosis — but so many of the therapies are so safe that it seems logical to say, whether it's because you have COVID or because you potentially have MCAS but don't have COVID, in many cases it's worth a try. We're not talking about some of the more toxic types of treatments.

[40:15] Leonard Weinstock, M.D.: Right. And they are absolutely being studied. One of our members talked about his experiences with high-dose vitamin D — very exciting information about how that dramatically helped people. And clearly, 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. There was a study published in the GI journal about using high-dose famotidine showing an improvement in hospital survival.

[40:54] Dr. Linda Bluestein: Speaking of famotidine — would you be willing to briefly comment on famotidine versus proton pump inhibitors? Because I feel like PPIs are prescribed so readily. So many patients go on them and then they're never really revisited about whether or not they could wean off. And they can interfere with nutrient absorption and cause some other problems. Would you be willing to talk about that a little bit?

[41:23] Leonard Weinstock, M.D.: Well, when you've got a patient and you're doing an endoscopy and they've got an ulcerated esophagus and scar tissue and narrowing — really stage 4 of an acid condition — there's really no other choice short of surgery to fix a hiatal hernia than 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: work on dietary and behavioral modifications and try to start with the H2 blocker, because it's a lot easier to ultimately take somebody off an H2 blocker than a proton pump inhibitor. You have this hyperacid phenomenon when you take somebody off a PPI — whether because they've built more pumps, and then when the PPI goes away they just start pumping out acid like crazy. So it's easy to write the prescription but tougher to deal with the consequences.
[42:47] As far as the real problems — if you could come up with 10 different things that PPIs could do to you — I don't see that much in terms of B12 deficiency or malabsorption in practice. Most patients allow enough acid to come in to digest meat, so you don't always get iron deficiency or B12 deficiency. So you're not shutting the acid down completely, you're diminishing it. You may diminish it enough that your risk for C. difficile increases. You may be depressing acid enough that you're allowing excess bacteria in your stomach, and if you're regurgitating all the way up into the high esophagus, your risk for infection — like pneumonia — increases. Calcium is a consideration as well. There's calcium citrate, which you could take with your PPI to assure that your calcium will get absorbed. And even for osteoporosis, there's still some debate, but I do believe there's an increased risk of fractures. There are studies for and against that.

[44:24] Dr. Linda Bluestein: What do you recommend that patients do if they have difficulty finding a gastroenterologist who understands complex and frequently missed conditions like Ehlers-Danlos syndromes, mast cell activation syndrome, and some of the other things we've been discussing?

[44:40] Leonard Weinstock, M.D.: Well, you could try to educate your current gastroenterologist. I wrote an article along with Dr. Mulderings, Dr. Afrin, Dr. Pace, and Dr. Raza about MCAS, basically called "MCAS: A Primer for the Gastroenterologist." I initiated that project after reading in our own GI journal an article called "POTS: A Primer for the Gastroenterologist." And there are some recent studies published on a review of EDS by Dr. Fritzay on Ehlers-Danlos and GI symptoms. So you could try to bring those to your doctor — see if they have access to them, or just print them out yourself — or keep on looking around.
Now, there's a wide range among allergists: from "I don't believe it exists," to "I won't make the diagnosis unless the tryptase is high," to "Yeah, this sounds like MCAS, I'll treat it." So allergists may be helpful for MCAS. For EDS, I'd say look for physical therapists — they're the ones who can tell you which doctors are in tune with EDS. And some of those doctors are going to be aware of POTS and MCAS. But it's tough, and it's not going to get better until medical school changes.

[46:41] Dr. Linda Bluestein: We will have a link to those articles in our show notes as well, to make it a little easier for people to find specific things that Dr. Weinstock has mentioned today. As we're wrapping up, would you be able to let us know what patients you're able to see and treat?

[46:58] Leonard Weinstock, M.D.: Me personally?

[47:00] Dr. Linda Bluestein: Yeah.

[47:03] Leonard Weinstock, M.D.: Because I have a Missouri license, I only see Missouri patients. I will see patients — but if they just have POTS, I would prefer that they see cardiologists or neurologists. There are autonomic neurologists around who specialize in autonomic disease, and there are some cardiologists who are on board with treating POTS. And because the literature for POTS has been in the cardiac and neurology literature all this time — for EDS patients only, if they don't have symptoms in other parts of the body, I think basically going to pain specialists makes sense. If everybody 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. And then for MCAS — yeah, I'm seeing MCAS patients if they have predominant GI symptoms.

[48:26] Dr. Linda Bluestein: That makes sense. And could you let people know where they can find you? And is there anything else that we should have asked you about?

[48:33] Leonard Weinstock, M.D.: Well, gidoctor.net — I've got a lot of information there, and I post my articles, so you may find some of the articles we talked about in full length. Also, for mast cell activation syndrome, TMS for a Cure — tmsforacure.org — has a lot of good things on it.
[49:15] And I think it's really important that people look for resources on surgical management of EDS, and whether it's the mast cells that you have to deal with at the time of sedation — that's really important. So if you have a crossover of EDS and MCAS, you have to make sure that you're getting intravenous pre-sedation therapy to reduce complications of the sedatives. And Dr. Bluestein has made some wonderful handouts addressing operative problems, including intubation and how the surgeon stitches you up.

[50:09] Dr. Linda Bluestein: Definitely not enough awareness in that arena, for sure. Thank you for mentioning that.

[50:17] Jennifer Milner: It is a great handout.

[50:20] Dr. Linda Bluestein: 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 a really great conversation. I'm sure a lot of people are going to learn a lot.

[50:33] Leonard Weinstock, M.D.: My pleasure. Thank you so much.

[50:35] Dr. Linda Bluestein: Yes, absolutely. And 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 so very much for taking the time to come on the Bendy Bodies Podcast and share your expertise with us today.

[50:59] Leonard Weinstock, M.D.: My pleasure.

[51:00] Dr. Linda Bluestein: Thank you for joining us for this episode of Bendy Bodies with the 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 and associated conditions. Visit our website at www.bendybodies.org for more information.
[51:31] For a limited time, you could win an autographed copy of the popular textbook Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders just by sharing what you love about the Bendy Bodies Podcast. On Instagram, tag us @bendy_bodies, and on Facebook at Bendy Bodies Podcast.
[51:47] The thoughts and opinions expressed on this podcast are solely those 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.