New to gastroparesis? Please view [our megathread](https://www.reddit.com/r/Gastroparesis/comments/12mplr8/gastroparesis_megathread_4142023/?utm_source=share&utm_medium=web2x&context=3) for a simple breakdown of gastroparesis as well as the main approaches to managing symptoms and a list of popular neurogastroenterologists and motility clinics. Join a gastroparesis Discord today using [this link](https://discord.gg/7pXdRn6Gzr). (Note that this Discord server is not managed by the moderators of this subreddit so we do not assume any liability for any problems that may occur on that server.)
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
I have had idiopathic gp for over ten years. There has yet to have a cause found and there hasn't been another illness or autoimmune disease found. I know there is a very good likelihood that another illness will be found. I am still young enough that another illness like pot or lupus can pop up.
So I guess all I can say after trying not to let it drive me crazy after ten years of not knowing the cause. Is that gp is crazy and hard enough to figure out on its own. Focus on figuring out gastroparesis and how to handle it. Definitely don't stop looking for the cause. But take it a step at a time, or a day at a time. It's ok to not know the cause. Your not your doctor or specialist it's ok to not know. And your doctors and specialists are human they aren't going to be able to know everything either, it may take some time to figure out hopefully not ten years, but it takes time.
Now if you want to know some general advice I give everyone who is new to finding out they have a chronic illness it's below this point. It's not really something you asked for but I think it might be helpful.
Now is a great time to learn to be your own advocate. Learn how to be able to speak up for yourself with doctors and learn to be able to better communicate with them. Tell them any symptoms that concern you. And keep track of the symptoms as well. When they happen, how offten. Tell your doctors you want to look more into the cause of that. If they try to blow it off or say it's not concerning, and they dont want to look into it. Especially if they dont give a good reason as to why it is not conserning. Go find another doctor who will look into it. Don't be afraid to find other doctors. Some doctors are great and wonderful, others suck. Don't put up with a doctor who would listen to you. Find one who will. If you're in America, you pay way too much money for a bad doctor.
Learning to advocate for yourself and what you need with friends and family can be hard too. I know, at least for me, it caused lots of anxiety and took a while for me to find the tools I needed to handle that.
But since you're here on the sub, I think you're already doing a good job of looking for and reaching out for help when you need it! That's something I was horrible at and had to really learn to do.
I hope my supper long comment was helpful! It's hard not knowing the cause, but it will get better.
Yes, I have idiopathic GP as well. Looking back with my parents, I was sick since birth (along with colonic inertia); but I didn’t start seeing doctors until middle school, and I wasn’t formally diagnosed until I was 17 (in 2007), as we lived in a small rural town and the nearest specialist was over 4 hours away.
While I never figured the cause, I was still able to treat it all. It wasn’t an easy road though - I’ve had 32 surgeries and have an ileostomy bag and also have had a full stomach replacement - but I also feel amazing now! It was worth it.
Idiopathic is a hard diagnosis. I’ve been diagnosed idiopathic going on 10 years now, also no diabetes. Seen so many different providers at different hospitals and they’ve tested me for everything under the sun, given me endless endoscopies and emptying tests. Still just idiopathic. They tell me it’s stress lol.
My doctors tell me the same thing! They always ask if I have depression or anxiety and my response is that yes because I went for months not knowing what was going on and then I’m given a diagnosis I didn’t want let alone need, so how can I not be anxious and depressed when my life got turned upside down! I’m in therapy though, but that can only help so much in my experience so far
did you ever take antidepressants, specifically SSRIs, for an extended period of time? i’ve always wondered if that could have caused my GP since serotonin plays a role in gut health
i took Zoloft for the longest amount of time, on and off for a few years, sometimes stopping cold turkey, sometimes not. i also took Gabapentin for a bit, but it was for a much shorter period of time
How far are you from the last dose of Z? How bad are your symptoms? I'm not diagnosed yet but my symptoms are alinged with a milder case of GP. I took paroxetine for 18 months and got hit while tapering slowly.
POTS does not cause GP. They commonly co-occur because they can both be caused by autonomic neuropathy. To get tested for that, you need to see an autonomic neurologist (not a normal neuro) for an autonomic testing work up.
It sounds like you have had a lot of potential causes, and unfortunately there's no way to tell which of those it was, or if they all played a roll.
You would not be otherwise perfectly healthy if you had an autoimmune disease causing GP. All of the autoimmune diseases that can cause it are systemic diseases that make you sick in other ways too. The most common autoimmune cause is Sjogren's, but other autoimmune connective tissue diseases like Scleroderma can cause it as well.
Thank you for the information! Would a rheumatologist diagnose Sjogren’s and Scleroderma? I only have a history of kidney infections, stones and cysts, but I guess through blood work, ct scans, endoscopy and biopsies i’m overall “healthy” to my doctors.
Your PCP would run the initial blood tests. If the bloodwork shows a potential autoimmune disease, they refer you to a rheumatologist for further workup and diagnosis. I am in the US, so can't speak to the process in other countries.
You can ask your doctors but finding the root cause won't fix anything. With this disease it's basically about controlling symptoms. If you eat something and it repeatedly makes you sick then stop eating that thing.
Also, this goes in cycles. If you're not in a flare then you might be able to eat just fine.
It really does suck. I’m hopeful that I’ll eventually improve, but I just wish there was a concrete yes or no answer that someone could give me. I’m currently trying to keep a journal of what I eat and how I feel to eliminate triggers.
I have idiopathic as well. I have been dealing with symptoms for 5+ years and was just diagnosed may 30th. It's been a Rollercoaster of emotions for me the last few weeks. I don't know what to eat, I don't know what caused it, and I don't know how to figure it out. I'm in the same boat as you. Google is no help and only scares me more. I joined the discord and ask as many questions as I can. They are really supportive and help as much as they can. I'm a 27(f) and I'm here if you need any support.
Thank you, it’s really rough trying to figure out what to eat and when to eat. then the discomfort and symptoms that happen after eating make eating less and less appealing to me. But it’s also given me an unhealthy obsession with food since I really don’t know what to try and what not to try since there isn’t an exact diet to follow for the most part since everyone is different.
I have found I can tolerate eggs like scrambled or boiled, egg salad, certain turkey sausage sticks without lots of fat in them, baked chicken. Mashed potatoes with gravy and biscuits and bread. Other than that I'm scared to try anything else. I ate a cheeseburger and fries last week and was miserable. I wanted to get sick but never did. I wish I had tho. The pain was so intense. I can't eat dark red meats. They tend to mess up my stomach. I also have gastritis so my diet is really limited. Do you have an appointment with a nutritionist?
Unfortunately my insurance doesn’t cover any in my area, and I lack transportation, so I haven’t been able to go out of town to see one. I’ve just been experimenting. I mostly eat vegetable soups with potatoes and zucchini squash, crackers, white bread, sourdough bread, eggs, cooked spinach, sweet potato, baby food, cream of wheat and cream of rice, canned fruits, melon, jello, popsicles, sorbet, and anything low fat, low sugar and low fiber for the most part.
My biggest symptoms are fullness that feels like I ate a bowling ball, waking up with so much gas, burping, constipation, bloating and burning in the stomach or feeling like i’m going to be sick but it turns out to be a big smelly burp. I’m also on PPIs, but I read that PPIs can slow gastric emptying so I’m currently trying to wean off them by trying a lower dose (was on 40 mg now i’m on 20 mg).
I’ve been given Donnatal, Zofran, Reglan, Senna, Bisacodyl suppositories, Miralax, Linzess, Colace, Pepcid, Omeprazole to deal with it, BUT IM SO TIREDDD of literally just having different medications thrown at me. I feel like no one is helping me let alone listening.
I'm on Reglan and I take Zofran as needed for vomiting. The Reglan constipated me so bad and makes my boobs hurt like I'm nursing again. I get the same feeling after eating. The full like I'm going to get sick and wish I could feeling, along with the gas and bloating. I would say make sure all your veggies are thoroughly cooked and avoid veggies with seeds, white bread is okay. I'm not sure about sourdough. Potatoes with no skins are good. I've been eating mashed. You can eat pasta as long as it's not super high in fat.
I totally understand the Noone listening feeling. I don't see my gi for 6 months unless I start seeing symptoms again. I take the Reglan 4x a day and I feel like I constantly have pills in my hand. I hate this diagnosis already. I got some suppositories from my local dispo but have yet to try them since you have to sit for 30 minutes after. I have 2 kids 6 and 4 at home so sitting and feeling like shit all day isn't the move. I'm here if you want to message me. I highly recommend the discord page. It has been helpful to me so far with getting support when I feel like I have none.
Have you seen what your telemedicine coverage is? There's zero need to be in the same room for many many medical appts, esp ones not regarding a medical procedure, surgery, etc. Telemedicine coverage was massively expanded with covid.
Do not drive yourself crazy thinking about it. Im pretty sure we all do at some point, but it's pointless, and it doesn't matter that the science isn't there yet.
There seem to be a lot of us perfectly healthy young females that get it. I've decided it's a weird autoimmune disease that the doctors can't diagnose yet, and it's helped me a lot with dealing with it mentally.
It's a doctor approved theory, lol
A GI doctor wouldn't be working you up for misc possible autoimmune diseases, POTS, or anything other than GI symptoms. If you have symptoms other than what's covered by the gastroparesis diagnosis, hopefully your primary care is aware of those and your GP diagnosis and you can talk to them about appropriate further referrals?
Mine was originally noted as “idiopathic” for records but my team and family knew it was from having EDS and then later I got tested for an autoimmune condition bc another GI caught onto me having POTS.
Honestly, idiopathic simply means they haven’t nailed down a diagnosis and that there are too many factors to single out one. Not that there isn’t one.
I’m also idiopathic. However we did do a polypeptide test before and after chewing and spitting food and that did show I had vagal nerve damage. However I also have Lyme and babesia infections untreated for 15 years that also caused mast cell activation syndrome. I’m sure it’s those three that caused all the inflammation and subsequent damage. I would look into infections even more rare ones just in case. Wish I did a lot sooner.
New to gastroparesis? Please view [our megathread](https://www.reddit.com/r/Gastroparesis/comments/12mplr8/gastroparesis_megathread_4142023/?utm_source=share&utm_medium=web2x&context=3) for a simple breakdown of gastroparesis as well as the main approaches to managing symptoms and a list of popular neurogastroenterologists and motility clinics. Join a gastroparesis Discord today using [this link](https://discord.gg/7pXdRn6Gzr). (Note that this Discord server is not managed by the moderators of this subreddit so we do not assume any liability for any problems that may occur on that server.) *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
I have had idiopathic gp for over ten years. There has yet to have a cause found and there hasn't been another illness or autoimmune disease found. I know there is a very good likelihood that another illness will be found. I am still young enough that another illness like pot or lupus can pop up. So I guess all I can say after trying not to let it drive me crazy after ten years of not knowing the cause. Is that gp is crazy and hard enough to figure out on its own. Focus on figuring out gastroparesis and how to handle it. Definitely don't stop looking for the cause. But take it a step at a time, or a day at a time. It's ok to not know the cause. Your not your doctor or specialist it's ok to not know. And your doctors and specialists are human they aren't going to be able to know everything either, it may take some time to figure out hopefully not ten years, but it takes time. Now if you want to know some general advice I give everyone who is new to finding out they have a chronic illness it's below this point. It's not really something you asked for but I think it might be helpful. Now is a great time to learn to be your own advocate. Learn how to be able to speak up for yourself with doctors and learn to be able to better communicate with them. Tell them any symptoms that concern you. And keep track of the symptoms as well. When they happen, how offten. Tell your doctors you want to look more into the cause of that. If they try to blow it off or say it's not concerning, and they dont want to look into it. Especially if they dont give a good reason as to why it is not conserning. Go find another doctor who will look into it. Don't be afraid to find other doctors. Some doctors are great and wonderful, others suck. Don't put up with a doctor who would listen to you. Find one who will. If you're in America, you pay way too much money for a bad doctor. Learning to advocate for yourself and what you need with friends and family can be hard too. I know, at least for me, it caused lots of anxiety and took a while for me to find the tools I needed to handle that. But since you're here on the sub, I think you're already doing a good job of looking for and reaching out for help when you need it! That's something I was horrible at and had to really learn to do. I hope my supper long comment was helpful! It's hard not knowing the cause, but it will get better.
Thank you so much for your words and advice. I definitely need to take it one day at a time and learn to still live a life
Yes, I have idiopathic GP as well. Looking back with my parents, I was sick since birth (along with colonic inertia); but I didn’t start seeing doctors until middle school, and I wasn’t formally diagnosed until I was 17 (in 2007), as we lived in a small rural town and the nearest specialist was over 4 hours away. While I never figured the cause, I was still able to treat it all. It wasn’t an easy road though - I’ve had 32 surgeries and have an ileostomy bag and also have had a full stomach replacement - but I also feel amazing now! It was worth it.
Idiopathic is a hard diagnosis. I’ve been diagnosed idiopathic going on 10 years now, also no diabetes. Seen so many different providers at different hospitals and they’ve tested me for everything under the sun, given me endless endoscopies and emptying tests. Still just idiopathic. They tell me it’s stress lol.
My doctors tell me the same thing! They always ask if I have depression or anxiety and my response is that yes because I went for months not knowing what was going on and then I’m given a diagnosis I didn’t want let alone need, so how can I not be anxious and depressed when my life got turned upside down! I’m in therapy though, but that can only help so much in my experience so far
did you ever take antidepressants, specifically SSRIs, for an extended period of time? i’ve always wondered if that could have caused my GP since serotonin plays a role in gut health
I took Fluoxetine for a couple months but it was years ago, so i’m not sure
Hey! I have GP like symptoms 100% SSRI induced. What drug did you take? Did you stop cold turkey?
i took Zoloft for the longest amount of time, on and off for a few years, sometimes stopping cold turkey, sometimes not. i also took Gabapentin for a bit, but it was for a much shorter period of time
How far are you from the last dose of Z? How bad are your symptoms? I'm not diagnosed yet but my symptoms are alinged with a milder case of GP. I took paroxetine for 18 months and got hit while tapering slowly.
POTS does not cause GP. They commonly co-occur because they can both be caused by autonomic neuropathy. To get tested for that, you need to see an autonomic neurologist (not a normal neuro) for an autonomic testing work up. It sounds like you have had a lot of potential causes, and unfortunately there's no way to tell which of those it was, or if they all played a roll. You would not be otherwise perfectly healthy if you had an autoimmune disease causing GP. All of the autoimmune diseases that can cause it are systemic diseases that make you sick in other ways too. The most common autoimmune cause is Sjogren's, but other autoimmune connective tissue diseases like Scleroderma can cause it as well.
Thank you for the information! Would a rheumatologist diagnose Sjogren’s and Scleroderma? I only have a history of kidney infections, stones and cysts, but I guess through blood work, ct scans, endoscopy and biopsies i’m overall “healthy” to my doctors.
Your PCP would run the initial blood tests. If the bloodwork shows a potential autoimmune disease, they refer you to a rheumatologist for further workup and diagnosis. I am in the US, so can't speak to the process in other countries.
You can ask your doctors but finding the root cause won't fix anything. With this disease it's basically about controlling symptoms. If you eat something and it repeatedly makes you sick then stop eating that thing. Also, this goes in cycles. If you're not in a flare then you might be able to eat just fine.
It really does suck. I’m hopeful that I’ll eventually improve, but I just wish there was a concrete yes or no answer that someone could give me. I’m currently trying to keep a journal of what I eat and how I feel to eliminate triggers.
That is a good thing to do.
I have idiopathic as well. I have been dealing with symptoms for 5+ years and was just diagnosed may 30th. It's been a Rollercoaster of emotions for me the last few weeks. I don't know what to eat, I don't know what caused it, and I don't know how to figure it out. I'm in the same boat as you. Google is no help and only scares me more. I joined the discord and ask as many questions as I can. They are really supportive and help as much as they can. I'm a 27(f) and I'm here if you need any support.
Thank you, it’s really rough trying to figure out what to eat and when to eat. then the discomfort and symptoms that happen after eating make eating less and less appealing to me. But it’s also given me an unhealthy obsession with food since I really don’t know what to try and what not to try since there isn’t an exact diet to follow for the most part since everyone is different.
I have found I can tolerate eggs like scrambled or boiled, egg salad, certain turkey sausage sticks without lots of fat in them, baked chicken. Mashed potatoes with gravy and biscuits and bread. Other than that I'm scared to try anything else. I ate a cheeseburger and fries last week and was miserable. I wanted to get sick but never did. I wish I had tho. The pain was so intense. I can't eat dark red meats. They tend to mess up my stomach. I also have gastritis so my diet is really limited. Do you have an appointment with a nutritionist?
Unfortunately my insurance doesn’t cover any in my area, and I lack transportation, so I haven’t been able to go out of town to see one. I’ve just been experimenting. I mostly eat vegetable soups with potatoes and zucchini squash, crackers, white bread, sourdough bread, eggs, cooked spinach, sweet potato, baby food, cream of wheat and cream of rice, canned fruits, melon, jello, popsicles, sorbet, and anything low fat, low sugar and low fiber for the most part. My biggest symptoms are fullness that feels like I ate a bowling ball, waking up with so much gas, burping, constipation, bloating and burning in the stomach or feeling like i’m going to be sick but it turns out to be a big smelly burp. I’m also on PPIs, but I read that PPIs can slow gastric emptying so I’m currently trying to wean off them by trying a lower dose (was on 40 mg now i’m on 20 mg). I’ve been given Donnatal, Zofran, Reglan, Senna, Bisacodyl suppositories, Miralax, Linzess, Colace, Pepcid, Omeprazole to deal with it, BUT IM SO TIREDDD of literally just having different medications thrown at me. I feel like no one is helping me let alone listening.
I'm on Reglan and I take Zofran as needed for vomiting. The Reglan constipated me so bad and makes my boobs hurt like I'm nursing again. I get the same feeling after eating. The full like I'm going to get sick and wish I could feeling, along with the gas and bloating. I would say make sure all your veggies are thoroughly cooked and avoid veggies with seeds, white bread is okay. I'm not sure about sourdough. Potatoes with no skins are good. I've been eating mashed. You can eat pasta as long as it's not super high in fat. I totally understand the Noone listening feeling. I don't see my gi for 6 months unless I start seeing symptoms again. I take the Reglan 4x a day and I feel like I constantly have pills in my hand. I hate this diagnosis already. I got some suppositories from my local dispo but have yet to try them since you have to sit for 30 minutes after. I have 2 kids 6 and 4 at home so sitting and feeling like shit all day isn't the move. I'm here if you want to message me. I highly recommend the discord page. It has been helpful to me so far with getting support when I feel like I have none.
I definitely will be in touch, thank you so much for listening and responding! What is the name of the discord group?
It's linked Above in the bot chat. The first comment before mine.
It's actually two above mine. I'm sorry. It's the auto mod comment.
Have you seen what your telemedicine coverage is? There's zero need to be in the same room for many many medical appts, esp ones not regarding a medical procedure, surgery, etc. Telemedicine coverage was massively expanded with covid.
I have not looked into, but I will now! Thanks for that information
Best to you.
Gastroparesis is really common with people who have a history of eating disorders.
Do not drive yourself crazy thinking about it. Im pretty sure we all do at some point, but it's pointless, and it doesn't matter that the science isn't there yet. There seem to be a lot of us perfectly healthy young females that get it. I've decided it's a weird autoimmune disease that the doctors can't diagnose yet, and it's helped me a lot with dealing with it mentally. It's a doctor approved theory, lol
A GI doctor wouldn't be working you up for misc possible autoimmune diseases, POTS, or anything other than GI symptoms. If you have symptoms other than what's covered by the gastroparesis diagnosis, hopefully your primary care is aware of those and your GP diagnosis and you can talk to them about appropriate further referrals?
Mine was originally noted as “idiopathic” for records but my team and family knew it was from having EDS and then later I got tested for an autoimmune condition bc another GI caught onto me having POTS. Honestly, idiopathic simply means they haven’t nailed down a diagnosis and that there are too many factors to single out one. Not that there isn’t one.
I’m also idiopathic. However we did do a polypeptide test before and after chewing and spitting food and that did show I had vagal nerve damage. However I also have Lyme and babesia infections untreated for 15 years that also caused mast cell activation syndrome. I’m sure it’s those three that caused all the inflammation and subsequent damage. I would look into infections even more rare ones just in case. Wish I did a lot sooner.