Gastroparesis and the Impact of Autoimmune Diseases

Podcast Transcript

Dr. Scott Steele: Butts & Guts, a Cleveland Clinic podcast, exploring your digestive and surgical health from end to end. Hi again, everyone and welcome back to another episode of Butts & Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. And I'm always pleased to have a repeat guest back on, and we're pleased again to have Dr. Michael Cline, who is the director of Cleveland Clinic's Gastroparesis Clinic. And today we're going to talk a little bit about gastroparesis, but also talk about the impact of autoimmune diseases on this. Mike, welcome back to Butts & Guts.

Dr. Michael Cline: Thank you for the invite. I'm happy to be back.

Dr. Scott Steele: And I always like to refer our listeners back to your prior episodes. And so for those of you can scroll back, go on back to 2018, where Dr. Cline had the opportunity to discuss a little bit about gastroparesis background. But Mike, for our new listeners, give us a little bit about your background, where you're from, where'd you train, how did it come to the point that you're here at the Cleveland Clinic?

Dr. Michael Cline: Sure. I did my GI training in Pittsburgh at Allegheny General, and that was where I really became into the motility world. Was in private practice for just shy of 20 years prior to coming to the clinic. And I've been with the clinic now going on over eight years, at which time, about seven years ago, we started this gastroparesis center. We've expanded significantly number-wise when it comes to the patient volumes, but we're constantly looking for new areas, new ideas, new treatments, and new workups. And one of them we're going to talk about today will be the autoimmune, because it's becoming huge in our practice.

Dr. Scott Steele: Yeah. So let's start at the high level for our listeners who may not remember. First, let's talk about gastroparesis. What is it, do we know what causes it, and what type of symptoms may lead to this diagnosis?

Dr. Michael Cline: Gastroparesis, gastro means stomach, paresis means paralyzed or slow, and that's where that word comes from. The most common cause, if you took everybody in the country, would be a large number of patients who have diabetes for a long time, who develop a slow stomach because of damage to the stomach from the diabetes. It also can affect younger people. In fact, a very large portion of our patients are under the ages of 40 and they're ultimately young women. And that's what we'll get into in a minute here with the talking about the autoimmune.

The symptoms most patients have, if you had to rank them, number one is nausea 24/7/365. The second most common is vomiting. They also fill up quickly when they eat and they have a significant loss of appetite. So a lot of these patients will either they'll lose weight dramatically, or they'll convert to an all-carbohydrate diet where they eat nothing, I call it the Twinkie diet. They eat all carbohydrates and all sugars. Then they end up actually gaining weight because they're eating horrible nutrition, but because they can't eat regular foods, foods like high fiber foods or high protein like meats cause a lot of symptoms and fibrous foods will lay in the stomach way too long.

Dr. Scott Steele: Dr. Cline, can you give us a little bit of a ... How common is this? Do you have any numbers there and why is it so hard to identify, and once you do diagnose these patients, just give us a little bit of an overview in terms of how it's best treated.

Dr. Michael Cline: We don't really have a lot of numbers on gastroparesis, unfortunately. We need to get more numbers, but if you took diabetes as the main cause, there are estimates somewhere between three and four million Americans with, and I've never been diagnosed. What's concerning me is that the average person that we see in clinic will have symptoms for over two and a half to three years prior to ever getting diagnosed.

And the test that most people will choose to start with is a gastric emptying test. It's a nuclear medicine test. I call it the egg and toast test because that's typically what they use. And honestly, one of the delays in diagnosis is that doctors aren't very well educated in this. Even in gastroenterology, there's not a huge interest in motility and so it's not something that comes to mind. As one of my trainers used to say, if you don't think about it, you'll never make the diagnosis. So you have to think about it.

So I think part of it is getting the word out to physicians about appropriate testing with the right symptoms, and part of it is we just don't have the background data to know how common this disease really is. I think it's a lot more common than we admit. And I think a lot of the times it's either not brushed off, but not thought of as a diagnosis. So you do the gastric emptying test to figure that out and then typically when a patient comes in, what we do is we kind of work them up as a whole. We work the entire intestinal tract up to make sure that there's nothing else going on other than gastroparesis.

At the Cleveland Clinic here in our motility clinic and gastroparesis clinic, we don't really have great medicines available for motility. The drugs are limited, number one. They have significant side effects, potentially number two. So we are turning more and more to procedures to help get the stomach to empty faster. And so a lot of the times these patients will end up with procedures which do help and frequently work for gastroparesis. So medications, unfortunately, are fairly limited.

Dr. Scott Steele: Truth or Myth: only people with diabetes typically have gastroparesis.

Dr. Michael Cline: That's a myth. In fact, the majority of our patients are non-diabetics. I looked at this last year and over 80% of my patients come to see us in this clinic are between the ages of 17 and 35. And they're all young women, predominantly. It's very, very rare in men. For every one male, we'll have probably a hundred or more women. When a male comes into the clinic with the diagnosis of gastroparesis, a lot of times we are trying to rule it out, not rule it in, because it is so uncommon in men.

Dr. Scott Steele: Truth or Myth: lifestyle changes such as changes in diet can treat gastroparesis instead of any surgery or medication.

Dr. Michael Cline: That would be a myth. It will help, but it doesn't fix anything. And unfortunately, the diet that they use, this high carbohydrate, low fiber diet, is not a healthy diet. And if you already have diabetes that will drive your blood sugars crazy. So we use the diet for symptom control, but we're not fixing anything with diet.

Dr. Scott Steele: Truth or Myth: patients with gastroparesis have a higher rate of mental health disorders.

Dr. Michael Cline: That is actually true. There is a connection between anxiety, depression. We don't know what the connection is. A lot of this has never been studied, but we know there's a connection just by the volumes of patients that we see. There's a connection with previous history of trauma in your past, PTSD, but anxiety, depression, mental illness. And then the other thing is I like to tell patients and even medical staff that I speak to, this disease is a physical illness that can become a psychiatric illness very quickly because it's very isolating.

These patients are socially isolated. They don't want to go out to eat because they get sick when they eat. So they don't want to go to a restaurant, it's very uncomfortable. When they have friends over you feed them. Well, you don't want to eat. When you're invited to a friend's house, you don't want to eat. One of my patients came in with a t-shirt that I absolutely loved. It said not all diseases are visible. Because a lot of these patients don't look sick and so it's hard for them to explain to their friends or their family, how sick they really are inside. And it becomes very psychologically damaging and very depressing because they become very socially isolated.

Dr. Scott Steele: And Mike, I just want to clarify here the fact that it may be concomitant with some mental health issues, but this is certainly a real disease and not quote unquote in their head.

Dr. Michael Cline: Correct. So there's an association, but not a cause. And I tell everyone, that is another problem that we have in our medical field. Because a lot of these are young women, 17 to 35 year old women, a lot of physicians will automatically jump to eating disorders because eating disorders are common. Well, that's fine. Except when you do the appropriate testing and they have a delayed gastric emptying, that's not an eating disorder. And that's one of the things I tell all my patients right off the bat is yes, you might have had a history in the past. There might still be some issues, but you can't fake a gastric emptying test. Your mental issues don't cause your gastric emptying to be slow.

Dr. Scott Steele: So tell us a little bit about your research on the connection between some of the auto immune disease, and if you could just tell the audience who is unfamiliar with that term autoimmune disease, as well as the onset of gastroparesis.

Dr. Michael Cline: We're actually right now involved in a project where we're actually looking at patients that we have already diagnosed with autoimmune gastroparesis and looking at how they respond to treatment. So autoimmune, basically the way I think of it is autoimmune is your body's attacking itself. It's at war with itself. For people out there that may be more familiar with other autoimmune diseases, a lot of people know what rheumatoid arthritis is, or lupus is. It's in that same family of illnesses, but really totally different. And we believe at this clinic that when we see these 17 to 35 year old women, that is why these young women are getting gastroparesis is because their body's attacking their own nerves and muscles.

This was only diagnosed, or found to be a case four years ago. Prior to four years ago, we didn't know that these antibodies could hurt the stomach, that these things in the blood could cause your stomach to slow down. There was a study done with Mayo Clinic and the NIH that looked for these things. And so they have found at least 10 different antibodies now that could cause your stomach to slow down. These are all found through blood work. There may or may not be total body symptoms, so even if the patient doesn't have joint pain or a rash or muscle pain, which are some typical symptoms of other autoimmune things, we still look for them.

Dr. Scott Steele: So are there specific autoimmune diseases that are most connected to gastroparesis or is it just kind of this whole idea of the body attacking itself in general?

Dr. Michael Cline: There are several that are directly associated with gastroparesis. One of the most common ones is a syndrome called GAD antibody, GAD antibody. This is an antibody that was known about in Type 1 diabetes. So Type 1 diabetics, almost all of them, in one article 95% of Type 1 diabetics will have GAD antibodies in their blood, Type 2s a little less. If you're non-diabetic, you should have zero. It should never be there. And we have found that this GAD antibody, when it's really, really high, will cause your stomach to slow down. So that's a direct association with diseases like Type 1 diabetes and GAD antibody causing gastroparesis.

Another one is an antibody that is an antibody to calcium. There's calcium channels in your nerves. And these calcium channels will build up, your body can attack those. Patients might know a disease called myasthenia. Some people have heard of myasthenia. It's a muscle disease, a muscle disorder that can affect you everywhere. Well you can have myasthenia of the gut only, and we can find that through blood work. So that's another one that's very specific. You know, it was only four years ago that we found these. My concern is what do we not know? What are we missing? Are there other antibodies that we should be looking for that we haven't found yet?

Dr. Scott Steele: So walk us through... A patient comes in, they're having all these symptoms. They're a little bit worried about going to the doctor to begin with. Can you walk through what they're going to experience when they come for an evaluation or for treatment for gastroparesis here at the Cleveland Clinic?

Dr. Michael Cline: We preemptively interview the patients by nurse coordinator. Natalie Wiesel is her name. She actually does a pre-interview on the phone with every new patient. So she gets all their history, gets all their records, and she gets a very detailed history of their symptoms and their past workup and their past treatments. And then when the patient comes, and by doing that pre-workup, we also try to group appointments.

So if they need to see surgery, or if they need to see nutrition, we can arrange that ahead of time. The patient will then come in, they'll be seen by myself and nutrition or whoever else needs to see them. Or if my surgery partner needs to see them, Dr. Allemang is one of my partners, he'll see them. Typically that day we will get blood work, looking for these autoimmune things. And then we also typically get an x-ray because one of the concerns we have is that their stomach is the majority of their symptoms.

However, they may have severe constipation, or they may have other issues with the lower intestine, where the lower intestine doesn't work. And that adds more to the diagnosis as well as potential treatments. Makes common sense, as I tell everybody, if your stomach and your colon both don't work, well then working on your stomach alone won't help you. We need to help all the parts. And I give them that analogy all the time. And then we also typically will rely on a test called the wireless motility capsule or smart pill, which has a device that you can use to measure entire gut motility or movement.

It will measure the stomach, the small intestines, and then the colon, that test is usually done at a later date because of insurance approvals and things like that. But we get a complete workup. We work them up from start to finish, top to bottom, and really try to hone in on what specifically is wrong. And if we find the antibody positive, then we go down that road and treat it. And frequently it works, and this is why it's so exciting to talk about this. This is a new area of gastroparesis that we didn't have five years ago.

Dr. Scott Steele: That's extremely exciting stuff. And we're so glad that you're leading the charge in this arena.

So as you know, as a repeat guest, we'd like to find out a little bit more about you. Just some quick hitters, but because you've been asked some questions, we'll ask you some slightly different ones this time around. So, first of all, what is your favorite music or band?

Dr. Michael Cline: I'm actually a classical music fan. I grew up playing classical string bass. I gave up music to become a physician.

Dr. Scott Steele: Fantastic. And what's your favorite spot for vacation?

Dr. Michael Cline: My farm.

Dr. Scott Steele: And what's your favorite ice cream flavor?

Dr. Michael Cline: Strawberry.

Dr. Scott Steele: And final one: if you could have any car or vehicle, no matter the price, you had it, we're going to give it, what would it be?

Dr. Michael Cline:A Land Rover Defender.

Dr. Scott Steele:Fantastic. I don't know what that is. I'll have to look it up.

Dr. Michael Cline: It's a safari vehicle. It looks like the safari vehicles that you drive outside in safaris.

Dr. Scott Steele: Got it. So give us a final take home message for our listeners regarding this whole concept of autoimmune diseases and gastroparesis.

Dr. Michael Cline: One, push to get the right testing. Two, once you get the right testing, I always tell patients, we got to think outside the box. We can't just assume that it's pure gastroparesis. Even if you have diabetes, you can't assume that this is diabetic gastroparesis, because it may not be. And one of my old time trainers used to tell us, don't ever tell a patient, "Well, all that is wrong with you is ..." because 95 to 99% of the time, you're going to be wrong. You're going to have other things you're going to find. So he used to say, work it up, then figure it out.

But one of my favorite comments is thinking outside the box, don't assume it's diabetes. It may or may not be. If you're young, 17 to 35-year-olds, young women, if you don't think it's an eating disorder and your symptoms don't fit an eating disorder, don't let anybody convince you that it is an eating disorder. Have them work it up.

Dr. Scott Steele: Well, that's absolutely great take-home points. And so for more information on Cleveland Clinics Gastroparesis Center, please visit ClevelandClinic.org/gastroparesis. That's ClevelandClinic.org/ G-A-S-T-R-O-P-A-R-E-S-I-S. You can also call the center at 216.491.7853. That's 216.491.7853.

And again, please remember, during these times it's extremely important for you and your family to continue to receive medical care, receive your regular checkups, as well as screenings. And be rest assured, here at the Cleveland Clinic, we're taking all necessary precautions to sterilize our facilities and protect our patients and caregivers. Dr. Cline, thanks so much for joining us on Butts & Guts.

Dr. Michael Cline: Thank you so much for the opportunity. I appreciate it.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.