Why Do Some GI Problems Hide from Every Test? with Dr. Zachary Spiritos

[01:00] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we'll be talking with Dr. Zachary Spiritos, who is a neurogastroenterologist. I'm really excited about this conversation because I have had lifelong gastrointestinal problems. Now, I have not really been having any recently, knock on wood, but when I was a child, I had lots of problems. And when I was in my residency at the Mayo Clinic, I would get such severe episodic abdominal pain. They were working me up for all kinds of bizarre things, including porphyria. Later, of course, I had an irritable bowel diagnosis. And after I had my two children, my lower esophageal sphincter just decided to give way one day, and I started having horrible, horrible reflux and ended up having a surgery called a Nissen fundoplication. And that's where they wrap the top part of your stomach around the bottom part of your esophagus so that you don't get that reflux anymore. So my Nissen fundoplication has opened a little bit because I vomited a number of times, but anyway, this is about you, not me, but I just wanted to share that I've had lots and lots of GI issues as well.
So Dr. Zachary Spiritos is a neurogastroenterologist and founder of Ever Better Medicine, a specialty clinic focusing on treating complex digestive conditions, dysautonomia including POTS, and mast cell activation syndrome. He trained at Duke for gastroenterology and now works with patients who often have overlapping conditions such as disorders of the brain-gut interaction, EDS, MCAS, and dysautonomia. His approach combines conventional care with a strong focus on lifestyle, nutrition, and patient education. I am so excited to have this conversation because I know that gastrointestinal concerns are so common. This is such a common thing that I see in my practice. So I think this is going to be a really important episode. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[03:03] Okay, I am here with Dr. Zach Spiritos. Did I pronounce that right? I should have asked you before we started.

[03:08] Dr. Zachary Spiritos: You nailed it. It's a coin toss whether people get it right, but you got it.

[03:11] Dr. Linda Bluestein: Okay. I have to tell you, we got over 200 questions when I asked on Instagram what people wanted to know from you. I could not believe it. I was blown away by the number of questions that I got, and so we have a lot to cover today. In fact, I want to tell you some of the things — just to give you a little bit of a heads up, okay? We're going to talk about motility, dumping syndrome, gastroparesis, which of course is a motility problem, SIBO, visceral hypersensitivity, leaky gut, gluten intolerance, POTS, visceroptosis, compression syndromes, microbiome problems, malabsorption, inflammatory bowel disease, pelvic floor dysfunction, and of course treatment and diagnosis. We're not going to get to all of this, obviously, but I'm just trying to give you the big picture of what people asked about. So tons and tons of questions — lots of questions on medications and diet and all kinds of things. But I have to tell you the really funny thing first. Somebody actually put in the questions, "Is he a real doctor? He's too photogenic and great in front of the camera. Seems sus."

[04:28] Dr. Zachary Spiritos: All right, so I just had to mention that. I mean, these degrees you can get from Kinko's. You can do amazing things in Photoshop.

[04:38] Dr. Linda Bluestein: Exactly, exactly. So this is going to be such a great conversation. I know you've been doing such fabulous work in social media, really trying to raise awareness, which is really, really wonderful because we know that so many people are getting gaslit and they're just not getting the care that they need. So this is so important. Thank you so much for joining me today.

[04:59] Dr. Zachary Spiritos: I'm such a big fan of yours. I just started the social media journey last year and I've been listening to you for — I mean, this is how I started to learn about hypermobility when I saw it in my clinical practice. You provide such great, digestible information about how these patients present and talk about the challenges that they face and how to deal with them, and kind of hooking me up with other experts in the field so I can reach out to them. I told you about Dr. Hansen before, the slipping rib patient, and you've helped me make sense of this patient population that is now my entire clinic. You've been my mentor from afar, even though you had no idea who I was until a couple of weeks ago. So I'm grateful for you and I'm happy to be here.

[05:39] Dr. Linda Bluestein: Oh, well, thank you. That's great. I mean, that's the whole goal — to have as many patients, of course, get as much information as they need. But I also love hearing from physicians that have stories like that, because you obviously are helping a lot of patients. It has such a bigger butterfly effect when we can really help with physician education like that. So how did you get interested in this population of people?

[06:07] Dr. Zachary Spiritos: I'm a neurogastroenterologist by training, so I went to Duke, and early on in my attending career — I've been out of fellowship training for about 5 years — I did a lot of DGBI, which are disorders of the brain-gut interaction. So IBS, gastroparesis, functional dyspepsia, visceral hypersensitivity, pelvic floor dysfunction. And then as I grew my practice, I realized I was inheriting a lot of patients with dysautonomia and hypermobility, but I didn't know a lot about it. This is a couple years ago. We'd work on the bowel issues and their GI sensations and all of that, and we were making progress there, but then people still couldn't stand up, and they'd have all these complaints that I couldn't figure out. And their PCPs didn't have any idea either. So I just started to look things up, and I'd try to send patients to the local POTS cardiologist, but he was booked out for centuries — and that's at UNC — and the Duke cardiologist is booked out for centuries too. So I'm pretty savvy at cardiology. I went to a residency program with Dr. Hutchins, who's amazing, at Emory, and they train you to be effectively a de facto cardiologist. I was like, I can do this. And so I read and I read and I read, and I spoke to a lot of people and have amazing mentors in the field.
[07:20] And so I started to treat dysautonomia, and in that, I started to acknowledge a lot of the challenges that people with hypermobility face as well. I've diagnosed occult tethered cord and craniocervical instability and slipping rib, and obviously there are the vascular compression syndromes. Once you start learning about these things, these patients start to make a lot more sense. And then you start getting introduced to the wild world of MCAS, because that plays a big factor in all this pathophysiology. So that adds another wrinkle to everything. But it's been a learning process, and it was just a natural progression of my neurogastroenterology path and the patients that I see.

[08:06] Dr. Linda Bluestein: Yeah. And that's so fascinating because I think maybe we've heard about the connection between the nervous system and the digestive system, but it sounds like it's much more extensive than most of us realize. And treating the gut requires often more than just medications.

[08:24] Dr. Zachary Spiritos: Absolutely. Especially when patients come to clinic with whatever GI problem — the price of admission is usually an endoscopy or imaging of some sort. And when all the tests come back normal and the hardware is fine — so there's no cancer, no Crohn's disease, no peptic ulcer disease, no H. pylori — then you enter the neuro GI world. And that's where there is some disconnect between how the gut, the immune system, and the brain are communicating.
[08:57] Our gut sends signals to our brain via our spinal cord, and then the brain receives those signals and propagates signals back to our gut, informing how it moves. And so if there's any disruption there, you can have not only disturbed sensation — like heightened pain — but also altered motility as well. So you've got to get a focus on the gut and the central nervous system. And there's a lot of different ways to do that, but it can be tricky.

[09:25] Dr. Linda Bluestein: Yeah, definitely. And so let's start by talking about this population of people. You already mentioned dysautonomia, and one of the types of dysautonomia, of course, is POTS, or postural orthostatic tachycardia syndrome. And we know that people with EDS often have mast cell activation disorders, or mast cell activation syndrome, sometimes mastocytosis even. So let's talk about what are some of the most common gastrointestinal problems that this population faces. I'm sure we could talk about this for 20 hours or more, so if you could give us kind of a rundown of some of the most common things that you see.

[10:05] Dr. Zachary Spiritos: Yeah. Slow motility and pain, for sure. I kept it broad because there are so many different ways in which this can play out, but I think we could start with the slow motility first.

[10:19] Dr. Linda Bluestein: Okay.

[10:20] Dr. Zachary Spiritos: So with dysautonomia — it's an imbalance in your parasympathetic and your sympathetic nervous systems. You're more driven towards the sympathetic, and your parasympathetic is a little bit more dampened for a variety of reasons. And our parasympathetic nervous system is rest and digest. It helps your stomach squeeze and your sphincters relax, and pushes that food distally to where it ultimately reaches the rectum and then your anal sphincter relaxes and you can defecate. But when you're in more of that sympathetic drive, things just don't move as well. And so you can develop slow motility.
[10:55] So gastroparesis — well, let's start more proximally with ineffective esophageal motility. When we read manometry studies, we can often see that the esophagus just doesn't squeeze as well as it should. Gastroparesis. Small bowel dysmotility, which we have a tough time measuring — there are certainly tools to do so, but I don't do that in my practice. And then colonic inertia, or a slow-moving colon. And there are defecatory dysfunctions, which is kind of a different animal altogether — pelvic floor dysfunction, which we often see in hypermobility.
[11:29] And then pain. Let me talk really quickly about the hypermobility folks. They also have a relative neuropathy as well. I'm not quite sure why it happens. Maybe I can pick your brain about that. Is it the disrupted collagen? In turn, you get more lax tissue and that disrupts the nerve endings? But you can get this relative neuropathy. So they also are suffering from a type of dysautonomia, even if they don't have full-on POTS.
[12:00] And then let's talk about pain. So the vagus nerve conveys our parasympathetic afferent and efferent nerves. Our afferent nerves take signals from the gut to the central nervous system, and efferent nerves take signals from our brain to our intestines. So there are not only issues with movement — where the brain sends efferent signals to the gut in terms of how to move — but also the afferent signals are perturbed as well. So there's a disruption in pain signaling. You have intense nociception, more pain than you should, which we call visceral hypersensitivity. In gastroparetics, they sometimes get a lot of pain, but that pain is unique in the sense that you can give them promotility agents — agents that help the stomach move and squeeze — and that should make their pain better, but it doesn't. So you give these patients promotility agents, and you can document that the stomach is squeezing better on imaging, but their pain is still there. So it's more nuanced than just getting things to move. There's also a pain sensory disorder as well.
[13:07] You also have to be aware of everything else that can uniquely affect this patient population. MCAS can cause a lot of GI pain as well. So you have to tease out whether there's a mast cell disorder at play, because those mast cells really can hypersensitize these nerves. They live in the GI tract as well as essentially everywhere else in the body, and they release not only histamine — which can sensitize nerves — but TNF, which is a pro-inflammatory marker that can cause local inflammation and really sensitize those nerves. So that could cause pain. And then the patients who have pain with gastroparesis — you also have to ask, do they have MALS? That's another source of postprandial pain. So you just have to be aware of these things.
[13:47] All these conditions have different ways in which they present. There are certain questions you can use to tease it out, but it's also a little bit trial and error. We try certain things, we obtain some diagnostic data points, and then we touch base. I touch base with patients every 7 to 10 days, like, "Is this working?" Because that's also informative in terms of what the underlying pathophysiology may be. I know that was pretty long-winded, but hopefully that was helpful.

[14:13] Dr. Linda Bluestein: No, no — that was great and to the point. It's a good way to think about things and put them into some bigger buckets. So I really like that. And the visceral hypersensitivity problem — I was scoped, and I've had a lot of GI problems throughout my life. Knock on wood, not now, but I have in the past. And I think it's really tough when you get told, "Well, you have visceral hypersensitivity," because a lot of us — we gaslight ourselves as well as other people gaslighting us. And even if it's explained to us that no, this is a real phenomenon, we tend to think, "Oh, I'm just not strong enough, or I'm just not able to cope with this adequately."
[14:56] So I feel like there's a lot of misunderstanding around that and it's very challenging for people to deal with that as a diagnosis. I feel like there are certain diagnoses that are a lot easier for people to accept and wrap their heads around. And maybe part of it is because it's easier for their families. If they go to another physician and say, "Oh, I have this particular thing that can be measured," they tend to get more respect for that.

[15:22] Dr. Zachary Spiritos: Yeah. We could measure visceral hypersensitivity if we did functional MRIs — you can really pick it up there. We don't do them because they cost an arm and a leg and they don't really change treatments. But it is really challenging. And I think it's compounded by the fact that a lot of providers don't know how to explain it. So they're like, "You know, just take a load off, just de-stress a little bit."
[15:41] And that's problematic for a couple of reasons. One, it oversimplifies the problem because it is multifactorial. I'm a big fan of diaphragmatic breathing, but it won't solve all of these issues. And then it also puts the onus on the patient — like you're doing something wrong, like you're too stressed out, you aren't in tune with yourself, fix it and all of this will get better. I think it's very misleading and inappropriately puts a lot of blame on the patient, which is not great.

[16:06] Dr. Linda Bluestein: And a lot of people who have gastrointestinal problems in this population have been to a gastroenterologist, they've done probably some labs, they've had celiac testing and maybe a variety of different things. And then the ticket to admission, as you said, is an upper endoscopy and/or lower endoscopy depending on where their symptoms are. So what is your approach? Because I imagine your approach is quite different when it comes to working people up.

[16:37] Dr. Zachary Spiritos: Yeah. It starts with the interview. I always have to start with when did things begin? And it really is informative. Was it a huge GI bug? Was it an infection? Post-viral, post-COVID IBS is very, very real. Was it puberty, and then you developed POTS? Was it pregnancy, and then you developed postpartum MCAS? I think that's really helpful in terms of putting this all together, because our diagnostic tests aren't perfect. The clinical history informs a lot of where I'm going to go.
[17:07] And then understanding what your biggest symptom is really tells me what organ system we're going to start with. I also have to make sure you're pooping well, because a lot of people have a lot of issues, and constipation is really challenging. People come to me and they're like, "I think I'm dying. I think I have cancer." And we just realize they have a huge stool burden. It can really be quite painful. So yeah, it's tricky, but I definitely spend a lot of time with patients getting to understand the cadence of everything. What makes things worse? What makes things better? We talk about stress and sleep and your job and your relationships and your diet and your medications and all the symptoms. You have to do the whole review of systems to really understand if MCAS is at play, if hypermobility is at play.
[17:58] And then you do the physical exam. You do the Beighton score, but I don't really love the Beighton score. I've made some posts about that because I've had so many patients where I'm like, clearly you're hypermobile, but their Beighton score is underwhelming. Their skin is lax, and they have MALS and they have thoracic outlet syndrome. And I'm like, there's something else going on here. I don't care what the criteria says. I'm just going to treat you as such.

[18:20] Dr. Linda Bluestein: Right. And I do want to just quickly interject — MALS, median arcuate ligament syndrome, is one of the compression syndromes, and we'll get into that more in just a little bit. So you're starting with a very thorough history. I just want to make sure people who are not familiar with certain terms have them defined. It was Osler who said, "Listen to the patient — they're telling you the diagnosis." And I feel like this is such a huge problem now, especially in cardiology. I'm a lot older than you are, so when I was going through medical school and residency and everything, and as an anesthesiologist spending 3 months in cardiology in my intern year, you were taught all these things about how to determine what's causing a murmur. But now it's just, "Oh, there's a murmur, I'm going to get an echo." The art of the physical exam — even the medical history — just isn't what it used to be.

[19:16] Dr. Zachary Spiritos: Absolutely. Yeah. We've come to stop trusting patients because I think we were taught a certain way. In GI, there are dozens of pages on Crohn's disease and peptic ulcer disease, and irritable bowel syndrome is given 2 pages — but it's infinitely more complex than all of those other pathophysiologies. We just have a tough time understanding it. And so when someone comes to you with MCAS or hypermobility — goodness, there are diagnoses there that I hadn't heard about until I started reading about them. Craniocervical instability was not on my board exams.

[19:48] Dr. Linda Bluestein: No.

[19:48] Dr. Zachary Spiritos: Tethered cord was a new diagnosis to me. And so if people come to you with challenges and symptoms that don't fit within your paradigm of what you understand about medicine, then oftentimes it's dismissed — like this doesn't exist, or it's stress, or it's anxiety. People stop becoming curious about why someone's symptoms are what they are, and they blame it on anxiety. They're not taking the next step. It's really challenging for patients. People start to just not trust patients. And again, as you've mentioned, they'll tell you the story, they'll tell you what's going on. You just have to listen.

[20:20] Dr. Linda Bluestein: Yeah. I think as our labs and imaging have become more and more sophisticated, so many people think if it's not showing up in the labs and it's not showing up in the imaging, then therefore it does not exist. I've had people say to me so many times, "I had every lab test known to mankind. They tested for everything." And then I look at what they tested for, and obviously there's an almost infinite number of tests. So we should always be saying, "The tests that we ran didn't come up with anything conclusive, but we'll keep looking." And I wish that more people were in a position where they could do that.
[21:01] So I want to talk more about these motility problems because I feel like this is such a common issue. You know, you see a lot of people who eventually might end up on tube feeds or even TPN — total parenteral nutrition. And that's often because they started with a motility problem. And obviously that's a tragic outcome. You can get sepsis and clots forming on the line. So we really want to try to use the gut as much as we possibly can. Can you run us through the category of motility? Maybe starting with slow motility, because obviously there's also the opposite, although it sounds like that's less common. How do you kind of distill that out and what kind of things can actually be done for it?

[21:52] Dr. Zachary Spiritos: Yeah. The most common thing that I see is gastroparesis. And it's really tricky. The pathophysiology is elegant, but we have very elementary tools. We just don't get it right. And so it always starts with understanding the diagnosis first. Is it gastroparesis? Are they not eating because of SMA syndrome — superior mesenteric artery syndrome — where the fat pad is lost between the aorta and the SMA, clamping the duodenum? Do they have median arcuate ligament syndrome making it really challenging to eat? Do they have IBS and central sensitization where it hurts to eat?
[22:34] But if we're focusing on, okay, they have slow motility, they have gastroparesis — what do we do? We start with diet first, and that's the ground floor. It moves the needle for a lot of people, but for more severe cases it's not doing a whole lot and they've tried everything. We talk about small frequent meals, trying to introduce fiber that is blended up, de-seeded, de-peeled — not any of those hard soluble fibers. Less seeds, less nuts — kind of a blenderized diet. Our stomach is a blender, more or less. And if the blender's blade is a little dull — and gastroparesis is kind of like that — you just have to do it a favor. If you want to eat carrots, blend them up. If you want apples, blend them up, take the skin off. So I work hand in hand with the dietitian there, not only to identify what you should and shouldn't eat, but also calorie counting to make sure you're getting enough food and we don't have to go to parenteral nutrition or TPN.
[23:51] And then let's talk about medications. This is tough. We use promotility agents kind of apprehensively because they're not great and they have some side effects. So Reglan is the most notable one — it helps food move. But studies show that it doesn't work very well on its own. It works mechanistically, but it doesn't help with patient symptoms. However, if you do Reglan with diet, it does move the needle. If you use Reglan, diet, and a neuromodulator, it helps even a little bit more. The neuromodulator is for the pain element. You can use amitriptyline at low doses, nortriptyline at low doses. What they do is work at the level of the spinal cord to help tune out some of the inappropriate pain signaling from the gut. But you have to be careful because they can also slow down motility in the colon, and if you have dysautonomia, they can lead to more orthostasis. Fortunately, you can get away with low doses. You can use Buspar, which helps with gastric accommodation. You can use Cymbalta — less commonly — but Cymbalta can also worsen POTS in some regards because it increases your norepinephrine at the synaptic terminal. So there's a balance there.
[25:12] And then to go back to promotility agents — you can use erythromycin, which is an antibiotic that increases your motilin. But that has tachyphylaxis, so it doesn't work after a couple of months, and it has QTc prolongation. I usually blend a promotility agent. You can also use prucalopride, or Motegrity, which works not only proximally but distally as well. And in these dysautonomia patients where you're generally dealing with global dysmotility, it's not a bad agent, and it's now available on GoodRx for a reasonable price. So Motegrity is a good one — low side effects, hits the serotonin receptors in your gut.
[25:55] Then I'll use a neuromodulator as well to help with the pain. But everybody's different. Some people don't want to take pain medications. How can you help with the pain nociception centrally? You can also use hypnosis — hypnosis has pretty good data for it. You can use cognitive behavioral therapy if you have a lot of catastrophic thoughts about what's going to happen, like, "If I eat this, I'm going to have pain all day." CBT kind of enables you to challenge those thoughts, to understand whether they're real or not. And then there's functional dyspepsia, which is kind of a cousin of gastroparesis where the stomach is moving okay but you have a lot of pain — that's a different conversation.
[26:31] But generally speaking, we talk about diet. I use some promotility agent if needed, and complement it with something to help with central pain processing. And then we always talk about sleep, stress, getting outside, relationships, exercise. I recognize not everybody can do all of those things, but we tackle all of it because it blends together. I always tell patients this is really tricky, and when I see you in a couple of weeks, we're not going to be 100% better — but I'm looking for 10%. We're going to be working together for a long time to understand your body and what works for you. It's a dance, and we work at it together.
[27:21] Oh — another gastroparesis tip. You've got to poop. Everything in gastroparesis is worse when you can't poop. If there's a backup on I-95, you've got to fix where the car crash is first, and then things don't always rectify themselves entirely, but they get better. So you've got to get people pooping. But you're dealing with the same issues — why aren't you pooping? People want to poop. It's not just like, "Oh, go poop." You have to get into that too. But it's still a tube — an elegant tube, but still a tube. You've got to address the distal blockage first before you can confront anything proximally. That's how I think about gastroparesis.

[27:57] Dr. Linda Bluestein: Okay. That's a super helpful tip. And what I find happening very commonly with my patients — maybe because my practice is much more focused on pain on the whole — is that people don't necessarily bring up to me how often they're pooping. So I have to ask them specifically. And then sometimes they'll be like, "Oh yeah, once a week." And I'm like, once a week? That's not okay.

[28:29] Dr. Zachary Spiritos: They have so many other bigger things to talk to you about.

[28:31] Dr. Linda Bluestein: Exactly. Exactly.

[28:32] Dr. Zachary Spiritos: So it gets lost in the shuffle. Yeah.

[28:35] Dr. Linda Bluestein: Yeah.

[28:36] Dr. Zachary Spiritos: I also want to say that you've got to make sure a lot of patients have MCAS too. MCAS can cause pain as well. So before saying, "Okay, you have gastroparesis and there's a pain element to that," you have to make sure there's no MCAS, and make sure there's no MALS, because MALS can cause postprandial abdominal pain. We can talk about the pathophysiology there, or talk about the rectum and how challenging it is to poop. I'll let you drive the ship, though.

[29:00] Dr. Linda Bluestein: Yeah, it's really hard not to jump around a little bit, so hopefully people are going to bear with us on that. I did have a question. Constipation, bowel movements, how frequent — what is the goal? What is the goal for bowel movements? I feel like that's an important one.

[29:20] Dr. Zachary Spiritos: Whatever makes you comfortable. Fecal stasis doesn't cause any problems if you're not symptomatic. There are people who poop once a week and they're okay with it. If they're not bloated and not uncomfortable, that's totally fine. There's this idea of like pooping 3 times a day or once every 3 days, but I find there's great variability. Once you get to like 7 or 8 days, people are generally pretty symptomatic. Or if you probe, they're like, "Yeah, I get full a little early and I've failed 4 colonoscopy preps in a row and I'm bloated." And then you're like, okay, maybe we have to deal with this. But generally speaking, if you're bloated and uncomfortable and in discomfort, we should address it.

[30:00] Dr. Linda Bluestein: So the goal of going every day is not necessarily something that we should apply to everybody.

[30:06] Dr. Zachary Spiritos: No — it's like saying, "I like my haircut, but if I had Dr. Bluestein's hair on my head..." I think your hair is fantastic. I don't want your hair on my head. You poop the amount that you need to poop, and you can't apply that template to anybody else because they're not going to feel great.
[30:25] Also, women and men have huge disparities in how well their colon moves. Men's colons move a lot faster than women's. Estrogen tends to be the brake on the colon. That's why in the perimenopause and postmenopausal phase, a lot of women get a little more constipated because the estrogen isn't there. There are also more twists and turns, and the pelvic organs have an impact on the relative movement of the colon too. So yeah, everybody's different.

[30:54] Dr. Linda Bluestein: Before we move on to compression syndromes and SIBO and visceroptosis and all these other things we want to cover — while we're still on motility problems — what are your thoughts about Mestinon or pyridostigmine for POTS and how that might potentially impact motility?

[31:17] Dr. Zachary Spiritos: Yeah, so I do use Mestinon for POTS. It is not the first thing I go to, but if we need a relative reduction in heart rate without compromising blood pressure, and there are concomitant GI issues like slow motility, then I will use it. I don't think it's a game changer. I think it's an adjunct therapy. If you think mechanistically — and I'm probably oversimplifying — you have this autonomic imbalance in postural orthostatic tachycardia syndrome where your sympathetic is a bit higher than your parasympathetic. The Mestinon kind of just nudges that. But does it really dampen your sympathetic drive? I don't think so. I think it just increases your parasympathetic arm, so it can take the edge off, but it's not everything. Mechanistically and theoretically it should work better than it does in practice, but it is a tool that I have and will certainly use.

[32:16] Dr. Linda Bluestein: One last comment on the motility issue — I had a patient the other day who had such bad colonic inertia that she actually had a massive amount of her colon removed. And she said it dramatically helped her from the standpoint of having bowel movements. But wow, that seems really aggressive, and then you'd have all kinds of other problems afterward, I would think.

[32:45] Dr. Zachary Spiritos: Yeah. That's a tough one. I've only sent one patient to surgery and she had some mitochondrial deficit that was just horrendous and we couldn't overcome it. But you can throw the kitchen sink at these patients. You want to make sure there's no outflow obstruction, no pelvic dyssynergia. And then diet, some low-fermentable fiber, laxatives. When we're really getting desperate, I'll combine a secretagogue like linaclotide — which effectively pulls water into the intestines and makes the stool softer — combined with a stimulant agent like Motegrity, which helps the colon squeeze. So you're making the stool soft while simultaneously helping the colon squeeze and increasing water movement, and making sure the patient has the proper pooping position. It's kind of an all-hands-on-deck approach.

[33:49] Dr. Linda Bluestein: Yeah. And I certainly hope that more gastroenterologists become interested in helping this population of patients, because I'm sure you can't see everybody, and there are way more people that need help than there are clinicians that can help them. It's a huge problem.

[34:08] Dr. Zachary Spiritos: Yeah. It's such a fascinating field. It really is. And you get to really connect with people, as opposed to just connecting with their colons. When I was just doing general GI days and fixing dysphagia and taking out polyps, I'd think, I just have a relationship with the mucosal layer of your colon — that's all I know about you. But the challenging thing, and also the beautiful thing, is that there are so many different levers to pull. You can talk about mental health and diet and movement — there are so many different inputs to your GI health and how you perceive it. You can either think of this as very overwhelming, or think of it as an opportunity to positively affect GI health through all of these avenues.

[34:51] Dr. Linda Bluestein: Yeah. No, I think that's great. I had my screening colonoscopy not that long ago, and I never saw the gastroenterologist beforehand. It was all scheduled, I got my instructions, showed up at the hospital. Same thing for my husband — we had different gastroenterologists, but literally showed up at the hospital and met this person for the first time right before the procedure. I'd already done the prep and everything. So yeah, it's a completely different relationship that you're talking about.

[35:17] Dr. Zachary Spiritos: It's pretty strange, isn't it? Being such a vulnerable person and someone says, "Hey, I'm Dave. I'm going to take a look in your colon and I'll probably never see you again."

[35:29] Dr. Linda Bluestein: Yeah. Yeah.

[35:30] Dr. Zachary Spiritos: It's very strange.

[35:31] Dr. Linda Bluestein: It is very strange. And when I was having more GI problems — back when I was living in Wisconsin — I remember I was going to be having a screening colonoscopy and I tried to start talking about some of the issues that I had. Like, I'm going to be having this colonoscopy, is there anything additional we should be doing for diagnostic purposes? And this is before I knew about MCAS, because otherwise I would have said, "Hey, could you do biopsies and look for mast cells?" But anyway, I think there are different ways that people practice and different interests people have. So we're going to take a quick break and when we come back, we are going to try to tackle SIBO, gluten intolerance, visceroptosis, and we'll see what we get to. We'll be right back.

[37:44] Dr. Linda Bluestein: Okay, we are back with Dr. Spiritos. This is such a great conversation, and I know there are so many things we could talk about. I feel like we just have to pick the most important ones, and I do want people to be able to walk away with some pearls. You've already given us tons — a bunch of different ideas of things that can be done for motility problems. I was wondering if maybe we could talk about SIBO. I hate to say briefly, but I guess the question is: when do you suspect it, what kind of workup do you do, and how do you treat it?

[38:23] Dr. Zachary Spiritos: So small intestinal bacterial overgrowth is where there's a superfluous amount of bacteria in the small intestine. Mark Pimentel is a thought leader here. If you want to learn more, I would look up his talks — he's dedicated his whole life to this.
It's a tricky phenomenon. He describes it more as an infection, really — an overgrowth in the small bowel. We previously thought that bacteria should be in the colon, where it's more alkaline, and they kind of propagate up to the small bowel. But we're realizing it's just an overgrowth. It's almost like an infection. We're starting to understand the exact bacterial strains that cause SIBO as well, which is kind of cool.
[39:00] The biggest risk factors are really where the small bowel can't clear adequately. The small bowel has regulatory mechanisms like the migrating motor complex — kind of like a Zamboni — to clear the small bowel of bacteria, because it shouldn't be there, or should be there in relatively small amounts. Risk factors for that not working so well include dysautonomia, because that vagal input in your small bowel just isn't as effective as it should be, so you get poorly coordinated or dampened peristalsis. Narcotics are a big one because they're essentially a full stop brake for the entire GI system. Prior GI surgeries are also a risk, because you can get adhesions and stasis from the prior inflammation that distorts the way the bowel can move. Some people think prior cholecystectomy is a risk factor or PPI use as well, but the data isn't quite there — though I understand theoretically how that can happen.
[40:22] The cardinal symptom is bloating. It's tough to look past that — really look for SIBO if you're bloated. And then you can have either constipation if you have M. smithii, which is an archaea that increases your methane production and can slow down colonic motility — so that's called IMO, intestinal methanogen overgrowth — or traditional SIBO, which I believe involves E. coli and Klebsiella species that cause a lot of bloating and diarrhea or loose stools.
[40:55] So that's where I start: risk factors, the symptoms of bloating and bowel abnormalities, and then I test for it. I use a hydrogen breath test or a lactulose breath test — I usually use lactulose. It's a little bit more sensitive, so you'll get more false positives, but I'd rather have more false positives than false negatives.
[41:15] And then we treat. I go with the data and I use rifaximin a lot for hydrogen-producing, or traditional SIBO. Rifaximin works well. It's a eubiotic — it's not a traditional antibiotic, so it doesn't work everywhere in the body. It just shifts the bacteria to a healthier composition. Getting insurance approval can be a beast sometimes, but it works well and it's a 14-day course. Some people do want herbs, and I do have herbal approaches. There's just not a lot of studies for them — there are a couple, but they're in a handful of patients and haven't been reproduced on a larger scale in a randomized controlled fashion. So I'm a little bit hesitant. I always prefer rifaximin, but I try to meet patients where they are. If they want to do herbs, let's do some herbs. I've looked at what berberine does and what garlic does and what these other agents do. I'm not integrative trained, but I certainly embrace it when people want to go down that route. I will say the data hasn't shown that it's as effective as rifaximin. And if I'm wrong, please send me data.
[42:19] There's also a hydrogen sulfide SIBO variant that Dr. Pimentel has recently identified — that's a newer development. And for intestinal methanogen overgrowth, it's a combination of neomycin and rifaximin — a different antibiotic choice there.
[42:34] So I treat it when I see it, but I'll always say, this may not be it, and we may have to continue to investigate. Occasionally we treat SIBO and everything gets better, but that's usually in somebody who had recent bariatric surgery, developed tons of bloating, and then we treat it and it gets better. It's really rarely ever the whole story. There is a high recurrence rate — about 40% — just because you can't really fix the underlying pathophysiology unless the bowel is slow due to narcotics and you can wean off narcotics, which is obviously easier said than done. But if you have underlying dysmotility or stasis from prior bariatric surgeries, it certainly can come back.
[43:21] There are a couple of approaches for recurrence. You can continue to treat when it comes back, and people don't love that for obvious reasons. Or if someone wants to prevent recurrence, we can talk about promotility agents to keep the bowel moving. Motegrity is my first choice there because it works throughout the entire GI tract, both proximally and distally, helping the small bowel get rid of those excess bugs.
[43:47] Someone asked me about garlic. If you have IBS, garlic is a FODMAP bomb, so you have to take that into consideration. It's also just not well studied — there's not long-term data on how to use it, how to dose it, how long to use it for. That's where I always have a little bit of a hangup with herbal approaches. And if I'm wrong, please send me data. But Motegrity is my go-to. You can use erythromycin as well, but there are issues with tachyphylaxis — it stops working as well after about 6 months — and there are QTc prolongation issues too.

[44:27] Dr. Linda Bluestein: And what about patients who are taking Zofran or ondansetron for their nausea? That also slows transit, right? Could that contribute?

[44:44] Dr. Zachary Spiritos: I think so. Zofran can definitely cause constipation, and it works in opposition to the way Motegrity works — it acts on the same serotonergic receptors but in the opposite direction. I imagine it would contribute. I don't know how many people are on Zofran chronically, and obviously we want to stop it as soon as possible, but I don't know how well-studied that specifically is. What I do know is that when you're doing the SIBO test, it's very protocolized — you have to follow a specific diet and remove certain medications beforehand so you don't alter your native GI motility. So I imagine you'd probably take someone off Zofran before testing, but if they're on it chronically and that's potentially why they have SIBO, maybe you just test while on it. It's a really good question.

[45:28] Dr. Linda Bluestein: Yeah. And it's really interesting because I have a lot of patients who do take Zofran quite regularly because they have nausea from their POTS. So we try to get to the root cause and see if we can get their POTS better some other way, because Zofran can also cause headaches and QT problems. So anyway, I was just curious about that as a side note. And I'd never heard the term "eubiotic" before — that's fascinating. I know there are home tests for SIBO, and I was wondering if those direct-to-consumer tests are as accurate.

[46:06] Dr. Zachary Spiritos: I don't think so. I haven't fully evaluated them, but I use the TrioSmart — Dr. Pimentel's test. He's such a thought leader, and the TrioSmart picks up on the hydrogen sulfide variant of SIBO, which isn't picked up on other tests. Sometimes on other tests, if you have flat lines for both hydrogen and methane, it could suggest hydrogen sulfide SIBO, but it's really just guessing. I use the TrioSmart because it tests for all three. I want to talk about chronic nausea really quickly.

[46:44] Dr. Linda Bluestein: Okay.

[46:44] Dr. Zachary Spiritos: So it can definitely happen, and I have a lot of patients with dysautonomia — and without dysautonomia — who have chronic nausea and get sent to a GI doctor. But chronic nausea is a bit different from postprandial nausea. After-eating nausea points toward ulcers, dysmotility, gastroparesis. Chronic nausea that is around the clock and often worse in the morning — I often find that's due to an overly active sympathetic drive. The nausea receptor, the signal for nausea, is in the hindbrain — it's not actually in the GI tract. Zofran works primarily in the brain, not peripherally. Reglan works in both areas.
[47:12] So I use a medication called mirtazapine a lot for that. Obviously you want to work on sleep and cerebral perfusion if someone has dysautonomia. But mirtazapine works really well to dampen down those nausea receptors in the brain.
[47:36] I often find these patients also have a difficult time sleeping, and mirtazapine helps with sleep and helps with appetite a little bit. It's really safe. It was used as an antidepressant many years ago, but you're using it at subtherapeutic doses — 7.5 or 15 mg at night. I think it's a really nice adjunct to at least get people off Zofran, just because of the QTc concerns and because being handcuffed to taking a medication a couple of times a day is not ideal. Does it work all the time? No. But it's a nice option to try to make that change to something a little safer.

[48:02] Dr. Linda Bluestein: Okay. No, that's excellent to know, because chronic nausea — with or without dysautonomia — is a common thing. Thank you for sharing that. So would it be okay to move on to compression syndromes?

[48:18] Dr. Zachary Spiritos: For sure.

[48:19] Dr. Linda Bluestein: I want to be respectful of your time, so I'm watching the clock. What should we know about compression syndromes? I understand that's a very big question because there are multiple different ones and their presentations differ a bit. But if you could give us kind of a 10,000-foot overview — who should be evaluated, and what kind of workup and treatment might be considered?

[48:52] Dr. Zachary Spiritos: Yeah. In terms of compression syndromes that cause GI symptoms — not talking about May-Thurner or Nutcracker, which are a little different and can affect people with dysautonomia and their volume status — but for compression syndromes that affect the GI tract specifically, the first one we talk about is median arcuate ligament syndrome.
[49:10] The median arcuate ligament originates from the diaphragmatic crura — the crosshatch where our diaphragm lives. It's supposed to sit superior to our celiac artery and our celiac ganglion. The traditional teaching was that MALS is incredibly rare — a zebra — which to be fair it is in patients who don't have dysautonomia and don't have hypermobility. The pathophysiology is that the ligament starts to compress the celiac artery, and so when you eat, you get relative ischemia of your stomach. It just hurts — it's like a heart attack of your gut, because the celiac artery perfuses a good part of the stomach. You tend to get pain after eating, pain with exercise. There are certain ways people can manipulate their body to relieve that pressure — leaning forward, downward dog, exhalation can help.
[50:10] But there's also another school of thought, which I very much believe in, which is that it's not only the ligament compressing the artery, but compressing the celiac ganglion — the family of nerves that innervate the stomach. So it can be an ischemic presentation where it's compressing the artery, but I think the majority of patients who have pain are experiencing a neuropathy where it's pressing on the nerve bundle. It's kind of like a complex regional pain syndrome of the gut.
[50:43] The traditional testing we use for MALS is an ultrasound with inhalation and expiration to see if during inhalation that ligament squeezes the artery. But if it's negative, it doesn't really tell us how the ligament interacts with the celiac ganglion. And even CT scans that can show the "hooking sign" of MALS — which is pathognomonic — or an MRI, it's tough to see the relationship between the celiac ganglion and the ligament.
[51:13] So if we have a high degree of suspicion — the symptoms fit, we can't account for your symptoms with any other pathophysiology, you're not responding to other treatments — then I'm going to send you for a celiac ganglion plexus block. It can be tough to get approved because the established indication is for pancreatic cancer pain. Is it completely benign? No, but I think it's a reasonably safe procedure. So it's a risk-benefit conversation. If we don't have any other options and the testing is negative, I'll empirically refer for this after a thoughtful discussion with the patient. And it's a proof of concept — if it makes you feel better, then we can talk about identifying a surgeon who can decompress the area by peeling that ligament off of the plexus.

[52:06] Dr. Linda Bluestein: Yeah. I used to do celiac plexus blocks during my pain rotations in residency. And like you said, it's not a completely benign procedure — it's not super high risk with modern imaging, but you definitely don't want to do that casually. You want to be very selective for a wide variety of reasons, and it is expensive and invasive. So, okay, that's super helpful. And then what about SMAS?

[52:33] Dr. Zachary Spiritos: Yeah, so SMAS is Superior Mesenteric Artery Syndrome, where the third part of the duodenum — as it crosses midline — lives between the bifurcation of the aorta and the superior mesenteric artery. The traditional thinking is that people lose that fat pad that lines the joining of these two arteries. If you lose a lot of weight quickly, or you have some kind of spinal manipulation, that can close off that space. And so it just shuts down D3. You get a lot of obstructive symptoms like what you see with gastric outlet obstruction — nausea, inability to eat a lot, some pain — but the nausea element is particularly strong. It can behave somewhat like gastroparesis.
[53:34] I think this can also happen to people with hypermobility outside of the classic circumstances of rapid weight loss or spinal manipulation — just because they're hypermobile. The takeoff of the SMA from the aorta may be positioned a little differently. There's ptosis of everything, not only the organs but the vasculature, and that can compress the duodenum as well.
This is a little bit more straightforward to diagnose. The clinical history, negative endoscopy, normal gastric emptying study. And then you can do a small bowel follow-through where people drink contrast and it passes through the stomach into the small bowel. If there's a hangup between D3 and the level of L3, that raises suspicion. And the treatment is weight gain — building up that fat pad so that angle becomes a little more obtuse. Sometimes we have to do TPN to accomplish that. You can also try a GJ tube past the obstruction, which is easier said than done, but sometimes an advanced endoscopist can do that. It's a tricky situation. You have to weigh the options, what the patient wants to do, and what resources are available locally.

[54:44] Dr. Linda Bluestein: That's great to have those two syndromes clearly defined and know what our options are. So let's also talk about something that's a little bit more — I don't want to say mundane, but super common, I think. Gluten intolerance. Not celiac, but it seems like this is something that a lot of people are dealing with when they have mast cell activation and this complex of conditions.

[55:14] Dr. Zachary Spiritos: Yeah, that's a good point. Gluten intolerance is tricky. Obviously you want to make sure people don't have celiac disease, which is a distinct autoimmune condition. And then you kind of take the patient's lead to see how they feel after eating gluten. Some people have non-celiac gluten sensitivity, where they get not only GI symptoms but brain fog, fatigue, and muscle aches. And the question is: is that mast cell, or is that non-celiac gluten sensitivity? We're quickly learning that some conditions that were previously poorly defined — like interstitial cystitis — have a mast cell component to them. So is non-celiac gluten sensitivity just gluten irritating your mast cells? I don't think we know.
[56:01] And then in irritable bowel syndrome, some people think they are gluten intolerant, but it's actually the FODMAPs that cause a lot of bloating, distension, and pain. A FODMAP is a fermentable oligosaccharide, disaccharide, monosaccharide, and polyol — a long name for a poorly absorbed carbohydrate that evades digestion in the small intestine, makes its way to the colon, and the native bacteria there turn it into a lot of gas. That distension can cause pain in patients with IBS. But those symptoms are more localized to the GI tract. And it's not gluten per se — it's the fructans in wheat. Wheat simultaneously has fructans and gluten, so it's really tough to tease them apart.
[56:48] I don't empirically put people on a gluten-free diet, although I'm hearing more and more that maybe I should. You don't want to overly restrict people when there's not a lot of data to support it. It certainly helps some people, but not everybody. So keeping a very detailed symptom diary alongside a food diary is really helpful, to understand what your triggers are. When you eat something, it can affect you 30 minutes later — like with histamine intolerance — but with IBS or non-celiac gluten sensitivity, it can be 6 to 8 hours later. So I'm a big proponent of keeping a strict food and symptom diary to understand what's what.
[57:34] It's a hot-button topic, and I gave a pretty nebulous answer. But the bottom line is: we have to make sure you don't have celiac disease, because that carries real risk — vitamin deficiencies, nutrient deficiencies, small bowel lymphoma. But for the most part, if going gluten-free makes you feel better, by all means cut it out. I just have an incomplete understanding of gluten and how it works in the body.

[57:59] Dr. Linda Bluestein: Yeah. I feel like it's so complicated. And so much of what you were talking about earlier feeds into this. People eliminate one thing and then another, and next thing you know, I've had people come to me eating literally only 3 things.

[58:18] Dr. Zachary Spiritos: Yeah — and that's called avoidant restrictive food intake disorder. It's really tricky, because there's so much anxiety around eating. Eating should bring us together. It should be a happy moment, shared and enjoyed. One of the challenges, but also one of the great pleasures I get in clinic, is identifying the underlying pathophysiology so we can definitively say, "Okay, this is what you can eat, this is what you should avoid." And then working with a GI-savvy dietitian to reintroduce foods in a safe way. That partnership is really important — identifying a dietitian on your team who can help not only with identifying what to eat and what not to eat, but also with addressing the anxieties around eating. That's tough. It's really challenging.

[59:04] Dr. Linda Bluestein: So you do have a dietitian on your team?

[59:06] Dr. Zachary Spiritos: I do.

[59:07] Dr. Linda Bluestein: Okay. Yeah. I think that is so important. I get so many questions about that. In fact, that's part of the last batch of questions, but we're going to be running out of time. Low histamine diet — do you do it forever? And of course, with the low histamine diet, what is a problem for some people is not a problem for others. Just because a food is supposed to be higher in histamine doesn't mean it affects everyone the same way. Somebody also asked how to increase tolerance to foods. Others asked about over-restriction, about meal timing — a lot of questions related to food. But it would be really hard to get into all of those, and I want to make sure we focus on the things that are more specific to what you're doing.
[59:50] So can we talk in the last few minutes we have about PPIs — proton pump inhibitors — the good, the bad, the ugly? Because people tend to get started on them and then they never get stopped.

[1:00:06] Dr. Zachary Spiritos: Yeah. So there are clear examples where they are incredibly helpful, and everything in medicine is a risk-benefit conversation. If you just have some random GI cramp and you're put on a PPI, you've got to get off it. But if you have horrible erosive esophagitis from gastroesophageal reflux disease, peptic ulcer disease that is recalcitrant, a marginal ulcer from bariatric surgery, Barrett's esophagus, or eosinophilic esophagitis, there is clear data that it has benefit. Obviously we want to get you off it if we can, but it is a safe medication — that's just what the data tells us.
[1:00:45] The best studies out there suggest it can potentially cause two different conditions. One is intestinal infections. The thought is that your stomach's low pH should kill off bacteria — say you ate Uncle Bob's undercooked chicken and there's some E. coli there. Your stomach acid should be able to kill it. But if you're on a PPI, that could potentially allow pathogens to propagate and lead to colitis. That's one risk, though I've personally never seen it happen. And then potentially bone density loss — the studies haven't been consistent in showing that, but if I have a patient who is postmenopausal, thin, and a smoker, I'm going to say, okay, we should move towards something else here so we don't increase the osteoporotic risk.
But all the studies suggesting that PPIs cause mineral loss, Alzheimer's, cancers — they're all correlation studies. They look at people who have advanced renal dysfunction and dementia and cancer and find that at some point they were put on a PPI. But that doesn't suggest causation. The bottom line is the same as for any intervention in medicine: weigh the risks and the benefits. But it is a safe medication.

[1:02:16] Dr. Linda Bluestein: Okay. What about GLP-1s — glucagon-like peptide-1 receptor agonist medications? This could obviously be its own episode. A lot of people have come across a case study where it improved mast cell symptoms in one patient. I've had patients who experienced some weight gain and were concerned about it, didn't have much in the way of gastroparesis symptoms, and really wanted to try it. So I've started them on a very, very low dose and some have felt real improvement — plus there are anti-inflammatory effects. Do you prescribe these at all? What are your thoughts?

[1:03:06] Dr. Zachary Spiritos: It's a fantastic medication, really, if used appropriately. I have people who end up in my clinic with horrible constipation and nausea because somebody put them on a GLP-1 or GIP medication and said, "Take this dose for 4 weeks, then increase it, and then increase it again after that." It's just on autopilot. That's not how it should be used. It's like saying, "I'm on amlodipine 10 — let's just increase it every week until I feel better." That's just not how medications work.
But the benefits are incredible. There's weight loss, obviously. For people who have a lot of food noise — where their brain is constantly telling them to eat — it can turn that down, and in turn helps with liver health and decreases metabolic-associated steatotic liver disease, or what was previously known as fatty liver disease. It's now FDA-approved for sleep apnea. It has all these amazing benefits for people with underlying metabolic dysfunction.
[1:04:23] But then you take it to the MCAS patient population who may have underlying gastroparesis, and it gets a little tricky. Does it create delayed gastric emptying? Yes. But if symptoms are fairly well controlled and the patient can eat reasonably well — for patients with a milder or moderate phenotype of gastroparesis — you can say, "We're going to try it at a very low dose, touch base every week or two, and see how you do." We can always pull back if it's not working. So I don't think having gastroparesis is a non-starter for GLP-1s. For the right person, it's a really nice option.

[1:05:17] Dr. Linda Bluestein: Getting to the end of my list of questions — I want to come back and talk about visceroptosis at some point, maybe for a part 2. What about finding a good specialist when you have a lot of GI symptoms, and what questions to ask a gastroenterologist to see if they're a good fit? And one of my followers, Kate, specifically asked: why do doctors treat GI issues as if they're not connected to EDS?

[1:05:51] Dr. Zachary Spiritos: I think doctors just don't know a lot about EDS. I didn't know about it until a couple of years ago, throughout all of my training. The EDS body behaves so differently than someone without an underlying connective tissue disorder. There are new diagnoses, new pathophysiology. And traditional GI doctors work with hardware issues — plumbing issues. Is something wrong with the tube? Is there an ulcer? Is there inflammation? Can I biopsy and find H. pylori or some pathology? And if I can't, then it's probably IBS. And that's where it gets a little tricky.
Does IBS even exist as a distinct entity? I'm not sure. I think IBS is a catch-all diagnosis for people who have symptoms but nothing showing up on testing. And to Kate's question — a lot of people just don't understand EDS, and I'm still learning it. I have an incomplete understanding of it, and I get taught by patients every day about how their body works. As a medical community, we fall short in our understanding of this condition.
We also don't understand IBS very well. The majority of GI doctors don't understand IBS deeply. I read about IBS and think about IBS every day, every single day, and I'm still learning, because we're still understanding what connects to what — and everybody's IBS is different. Is it located in the gut? Is it due to too much gut stress? Is it due to dysbiosis? Is it due to altered serotonin pathways? Is it due to altered bile salt metabolism? It can get incredibly complex and heterogeneous.
[1:07:22] So finding your team is the other part of the question, and it's really tricky. Finding a neuro GI physician is really helpful, but there are certainly other doctors who want to be creative and think outside the box. You just have to find someone who's on your team. Even if they say, "Look, I'm not quite sure how this fits together right now, but I'm going to read, I'm going to ask questions, and I'm going to find you someone who can help" — that's what you need. But when someone shuts the door and says, "This is IBS," and offers some banal, unoriginal advice that probably won't move the needle, that's when it's time to move on.
[1:08:05] You need a partner in this. I'm relatively savvy in this area, I read a lot, and I think about this all the time — and I'm still rather unclear about how things are going to go with my patients. I'm very upfront about that. A lot of this is trial and error. This is not an opacity on a chest X-ray or a broken ankle. This is going to require us to work together, start things, stop things, and communicate closely. You just need someone who will listen to you and fight on your behalf. And I think you can know pretty quickly in that first interaction whether that person is the right fit.
[1:08:43] Patient forums are great — they'll tell you who's POTS-savvy and who's EDS-savvy. The bigger websites like Dysautonomia International, the MCAS website, the EDS Society — there are resources there as well.

[1:08:57] Dr. Linda Bluestein: Okay, that's great. And as you know, we end every episode with a hypermobility hack. Do you have one for us?

[1:09:04] Dr. Zachary Spiritos: You've got to learn how to poop. Everybody's got to learn how to poop. That stupid, stupid toilet they made — that porcelain throne — it's not conducive to good pooping. A lot of people with hypermobility and dysautonomia have issues pooping, whether that's slow transit, difficulty eating fiber, or visceroptosis where everything just kind of sags, or pelvic floor dysfunction, because in EDS you kind of compensate for the collagen laxity and all those muscles get really tight and tense.
[1:09:39] So we all have to be able to poop, and it's kind of low-hanging fruit. I'm going to walk through a couple of steps here if that's okay with you. First: the Squatty Potty is fantastic. You want to get your knees above your waist or hips when you're pooping to really open up that rectal angle. There's something called the puborectalis muscle — it's a sling that kind of cuts off the rectum, and it opens when our knees are above our waist. That's where I would start.
[1:10:19] And then a lot of people who are constipated have very tense pelvic muscles. Diaphragmatic breathing on the commode is really nice, as opposed to doom scrolling on Instagram or checking your FanDuel. You really want to work on relaxing your pelvic floor. I like Megan Riehl's video — she's from Michigan, she's brilliant, and she's a GI psychologist with a great demonstration of diaphragmatic breathing. One hand on your chest, one hand on your belly. Breathe and push out your belly, making sure the hand on your chest stays relatively still. Practice a couple of times a day for 5 minutes each, and just think about your pelvic floor relaxing.
[1:10:53] And then step 3 is pushing. You don't want to strain, but a gentle push — breathe in through your nose, then breathe out through your mouth like you're fogging up a mirror, and try to feel that rectum evacuate. There's more nuance to it, and I am by no means a pelvic floor physical therapist — but I love my pelvic floor physical therapist colleagues.

[1:11:17] Dr. Linda Bluestein: Yes.

[1:11:17] Dr. Zachary Spiritos: They are just an invaluable member of the team. But that's where I start with everybody. If you don't assume proper pooping position, you're fighting an uphill battle, and you can throw all the laxatives and fiber and belly massages you want at it — that positioning is pretty critical.

[1:11:33] Dr. Linda Bluestein: Yeah, no, that's great. And we did an episode on pelvic floor PT that I will also link in the show notes so people can check that out. That's super important. Can I take 3 to 5 more minutes of your time?

[1:11:44] Dr. Zachary Spiritos: Yeah, absolutely.

[1:11:46] Dr. Linda Bluestein: Okay. Because I do want to give people something on visceroptosis. What is it, why do people with EDS need to know about it, and how do you work it up and what do you do about it? I know that's an unfair question to squeeze into 3 to 5 minutes, but we did mention it several times and it seems unfair not to give people something to walk away with.

[1:12:14] Dr. Zachary Spiritos: Yeah. It's a diagnosis we make, but the interventions are tough. Ptosis just means sagging — ptosis of the eye in myasthenia gravis, for example, the eye sags. Visceroptosis is ptosis of all of your organs, because the scaffolding of your organs isn't as robust as it should be, due to those innate defects in collagen and hypermobility. So everything sags. A lot of people have a more protuberant lower belly because all the organs just kind of settle further down into their abdominal cavity.
[1:12:51] One thing that makes people feel better is just an abdominal binder — holding everything up. Ideally you'd want to hoist everything up, but we can't do that surgically in any reliable way. Going in and doing surgery is generally not a good idea.
[1:13:06] So: abdominal binders, decreasing the amount of gas load in your intestines. I generally recommend a lower-FODMAP diet — picking out the higher-FODMAP foods, those nonabsorbable carbohydrates that cause a lot of gas. I'll treat SIBO if there's concomitant SIBO, because if you have sagging organs the motility won't be as robust. Introducing fiber in a safe way — a lot of these folks have slow motility, so fiber that gels up and gunks up creates a lot of fermentation that is uncomfortable. Partially hydrolyzed guar gum is a nice non-gelable, low-fermentation fiber supplement that I often use in these patients. Proper pooping position is really helpful. Working with a pelvic floor physical therapist is great. Promotility agents if needed to help the colon squeeze.
[1:14:01] Obviously we can't reverse the ptosis, but we can alleviate some of the symptoms — the bloating, the sagging feelings — with an abdominal binder. Constipation can be treated with laxatives, diet, proper pooping position, and working with a pelvic floor physical therapist. And as a last resort, some people may need an ileostomy or a colostomy — which is not our goal, and I've actually never seen that happen. There are usually workarounds. We just have to deal with what we have — we can't improve the underlying hardware or improve the collagen.
And then you also have to rule out rectoceles, which are outpouchings of the rectal wall into the vagina or adjacent structures, because those can hold stool and create outflow obstruction. But that's kind of where I would start.

[1:14:57] Dr. Linda Bluestein: That's fabulous. That's so helpful. This is something that does come up in my practice. I've had people ask about it — I actually had one person who was looking into surgery somewhere in Canada for possible treatment. So I love some of those ideas, especially something like an abdominal binder, which can also help with dysautonomia. At least giving people something they can think about, discuss with their doctors, and consider trying. So that's wonderful.
[1:15:31] Okay, great. Well, thank you so much. This has been such a great conversation, and I know all of the listeners are really taking notes and getting so much information. I just want to thank you for taking the time. Before we wrap up, can you tell us a couple of quick things — where people can find you, what kind of practice you're doing nowadays, if you can see people from certain states and how that works, and if you have any special projects you want us to know about?

[1:16:06] Dr. Zachary Spiritos: Yeah, thank you for the platform. You can find me on Instagram at Dr. Zach Spiritos. We just opened up our new clinic called Ever Better Medicine. I was previously with UNC, and Ever Better is a telehealth clinic that is in North Carolina and Illinois, aimed to treat — we have a weight management division, but also a dysautonomia, MCAS, and chronic complex digestive symptoms division as well. So we treat POTS, MCAS, all these tricky GI conditions — whether it's gastroparesis, cyclic vomiting syndrome, chronic pseudo-obstruction — really, you name it. And we want to make identifying and treating these complex disorders accessible. So you don't have to go to Mayo or Cleveland Clinic or one of those amazing motility centers. We can come to you. You can be in your pajamas and we can work through this together.
It is a hand-holding operation. It is not set it and forget it. I will never put you on anything and say, "See you in 6 months." We are working together. It is a partnership. We have an amazing dietitian. We partner with GI psychologists. We're going to hire a pelvic floor physical therapist. We're creating exercise plans for core and lower extremity for people with dysautonomia. We're trying to create this kind of network of support for these folks who are misunderstood, whose symptoms are minimized, and to try to get them a better quality of life. We're starting to see our first patients in the next couple of weeks. If we are not licensed in your state, please send me a message about where you want us to expand to, because we are going to expand over time. But we've got to crawl before we can walk and make sure our EMR and website are working first. We're excited to get out there.

[1:17:48] Dr. Linda Bluestein: Yeah. The whole state licensure thing is such a nuisance. So right now you can see people from North Carolina and what did you say — Illinois?

[1:17:59] Dr. Zachary Spiritos: Illinois. Yep.

[1:18:01] Dr. Linda Bluestein: Okay. Very good. So if people are in different states — as you said, reach out to you on Instagram and say, "Hey, think about getting a license in Colorado so I can send you all my Colorado patients."

[1:18:13] Dr. Zachary Spiritos: Yeah, we're super receptive to that. And you don't have to be a resident of either of these states. If you want to take a vacation in Wilmington or Chicago, we can see you while you're there.

[1:18:23] Dr. Linda Bluestein: So they have to be physically sitting in that state when they have the telehealth appointment with you.

[1:18:29] Dr. Zachary Spiritos: Exactly.

[1:18:29] Dr. Linda Bluestein: Okay. Very good. Well, thank you so much again for taking time out of your very busy schedule to chat with me and share some really great clinical pearls. Thank you.

[1:18:44] Dr. Zachary Spiritos: My pleasure. Thanks for having me.

[1:19:49] Dr. Linda Bluestein: So I'm so grateful to Dr. Spiritos for coming on the show today and talking about gastrointestinal concerns that people have with EDS, dysautonomia, and mast cell activation. We know that this is so common, and I know so many of you are suffering from these symptoms. I'm excited that he's opened his clinic, and I know that he doesn't currently accept insurance, but he's hoping to in the future. So just wanted to give you a heads up about that.
[1:20:13] And I also want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions. If you would like to dig deeper, you can meet with me one-on-one. Check out the available options on the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at hypermobilitymd. You can find Human Content, my producing team, at humancontentpods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies Podcast disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.