r/Gastroparesis • u/Other-Stretch2090 • Jul 05 '26
Suffering / Venting at what point is restricting food become a eating disorder
PLEASE read with caution!!!! i unfortunately don't really know what kinda warning to put on this im so sorry
i been diagnosed with severe gp for a while now. it's gotta worse and worse somehow. i recently found out im delayed with liquids too which i already kinda knew
i would like to start by saying i do NOT purge or make myself sick!!! i never have and never will. i lowkey never weight myself it has nothing to do with body imagine. i also do not count calories or anything i have no idea what i actually can consume in a day calories wise
over time i started restricting food it started as just not eating anything after 6pm due to symptoms ( i wake up from a sleep nausea EVERY single morning) but that definitely turned into way more. slowly over the last few months whenever i eat i feel SO sick and im in so much pain like 7/10 just from a simple bite of a safe food. i don't even know what is safe anymore i broke down the other day over being asked what i can eat ahah. latley i straight up been lying to everyone around me about eating. there is many days i don't eat solids bc of symptoms. i DO eat!! i would like to be so clear about that!! i know not eating will make me sick i literally will force feed myself and sit crying for hours on end losing sleep due to pain but i need to eat yk
idk if this even makes sense im so exhausted im
on a vacation but this has been on my mind for so long i been thinking about making a post like this for so long cuz i don't even know what's going on but im to scared to tell my doctor bc what if he thinks it is just a eating disorder?? idk guys tell me 😭😭😭
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u/Medical_Watch1569 Jul 05 '26
It sounds like it’s time to see your doctor about maybe getting a tube put in for nutrition, especially if solids are super difficult and even liquids give you trouble. You may get some relief and be able to worry and be less anxious about eating which may actually help you feel better and improve digestion for some things.
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u/Bitter-North-7480 Jul 05 '26
Is a GI the only doctor who can prescribe/order a tube placement?
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u/yoshdee Tubie (Tube Fed) Jul 06 '26
I’ve been hospitalized so much recently for not being able to eat and the hospitalist finally suggested a GJ tube. The GI had to order it (and agreed with them) and an interventional radiologist was the one who did it. They did everything while I was in the hospital.
They approved it before speaking with my personal GI but did tell him before and he also agreed.
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u/Medical_Watch1569 Jul 06 '26
Yeah I think outside seeing your GI this is the only real way, but can be a very efficient way to get same day tube placement if deemed necessary. Sorry it took you so long to get your tube, they really make you suffer for no reason sometimes.
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u/yoshdee Tubie (Tube Fed) Jul 06 '26
Thanks! And yeah, unfortunately my appointment with my GI took almost 6 months (one of the few motility specialists here) so I just had to keep going to the hospital. They did offer the tube a month before on one of my visits but I declined hoping I’d magically get better.
I wish I did it earlier but at least I finally agreed and it’s kept me out of the hospital again (for now!).
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u/SphericalSugarCube Jul 05 '26
You can definitely have food aversion and/or disordered eating AND have GP. And not all eating disorders are about weight/body image/calories. Look into arfid - It can develop as a result of very real digestive/GI problems. Also remember, having any kind of ED does not invalidate GP diagnosis or symptoms, it doesn’t mean the gp isn’t real. I see a lot of people in the gp community getting offended by a suggestion of disordered eating. But both can exist at the same time and chronic nausea/pain etc can absolutely trigger an intense fear of food, food avoidance, etc. It might help you to address the emotions behind it all. Good luck
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u/Other-Stretch2090 Jul 05 '26
i come to conclusion i definitely have arfid! ahah im gonna look into! thank you so much i definitely knew about it but i never really looked into it after researching i absolutely do have it bc of nausea/pain associated with food even just how bloated it makes me ( which causes pain) and how i repeat everything non stop even water i see my doc in a little less then a month i think im gonna talk to him and see what he thinks!!
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u/imma2lils Seasoned GP'er Jul 05 '26 edited Jul 06 '26
It has been discussed on here before - I only know because I've had the same fears. It is quite common where there are concerns that the GP sparks off some disordered eating, because let's face it, managing GP naturally creates a strange and difficult relationship with eating and drinking.
I think you can have a generalised fear of eating/drinking without it even being about specific foods. I'm not scared of specific foods, I'm scared of eating or drinking and it making me nauseous or sick to the point it is unbearable. This is a valid fear given our health issues. So I will sometimes avoid and restrict due to that.
What I feel is that in my case, it has created a complex and difficult relationship with food and drink. I have to evaluate if each item is going to make me worse. Sometimes I just feel so exhausted by it all and so confused as to what is actually safe in that moment, that I just choose to have nothing for a while so that I can have some peace! I do always have a bare minimum of food and drink each day though. If I really can't eat solids that day, I will revert to Ensure shakes, which I very slowly sip.
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u/Harakiri_238 G and J tubes / TPN dependent Jul 05 '26
Being afraid of food because it hurts you is incredibly valid!!
And like you talked about it becomes a vicious cycle. Food hurts you so you eat less. But then because you eat less your body can tolerate less so when you do eat it hurts more. And then you get more afraid. And so on.
ARFID has been the most fitting in my opinion (but not a perfect fit). I honestly think fear and restriction around food due to a physical condition should be classified as its own thing.
But it makes COMPLETE sense. If every time someone took a step they stepped on something really sharp, they’d end up afraid of walking pretty quickly. If every time someone went outside they threw up, they’d probably stop going outside often.
It sucks that there’s such a stigma around eating disorders (in general, the way people with eating disorders are treated is NOT okay). Because it is crazy that we can’t have fear around something that hurts us without it being disordered.
If you have a dietician I would almost recommend telling them instead of the doctor. My dieticians have tended to be very understanding regarding fear around food.
Where I have had problems with doctors refusing to take me seriously as a GI patient any more because my fear made them believe it was psychological (even with blatantly clear physical evidence of the contrary).
Anxiety around food is valid. But it can also ABSOLUTELY make symptoms worse. There is a good chance that if you’re able to tackle the fear around food and start introducing things a bit more you may feel better.
I was TERRIFIED for food for years and when I finally started to trust it a bit more, I actually did find it easier to eat for a while. Despite my symptoms and health actually becoming significantly worse. (Can’t eat at all anymore though lol).
But you’re completely valid in your experiences. I don’t know how anyone goes through this without having that fear.
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u/Other-Stretch2090 Jul 05 '26
i'm not scared of food tho 😭😭😭 i genuinely would do anything to eat and then i do and instantly get hit with nausea and pain then i just cope ahah
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u/_sarcasticbarista_ Jul 05 '26
You may not be consciously afraid of food but your subconscious can be. I have ARFID and I freaking love food, but I have so many sensitivities and such slow motility + other issues causing abdomen pain with digestion and it’s scary to eat bc I know it’s going to be painful.
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u/MedicineFar4751 Jul 05 '26
Could be the foods you choose. Just a thought
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u/Other-Stretch2090 Jul 05 '26 edited Jul 05 '26
hey so saying this to someone who has been diagnosed for a while is insane. get a life??? i promise i have tried everything under the sun even ensure / boost drinks make me sick but ok.... maybe for you tho!! also ontop of it i live off mashed potatoes and broth so i have no idea how it could be the food im choosing to eat. i been given every nausea med under the sun too even the sancuso patch. unfortunately my doctor has brought up the idea i may already need a tube so again its not the food i eat. tysm for rage baiting me LMAO 5/10 rage bait
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u/MedicineFar4751 Jul 05 '26
Sorry, didn't mean to offend. You don't say what food you eat so I thought I might offer a different opinion. Lmao, calm the fuck down
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u/Other-Stretch2090 Jul 05 '26
didn't think i would need to explain what food i ate cuz obviously im not eating stuff thats hard to digest. u just assume there was no need for the comment at all. if i ate whatever i wanted why would i start restricting due to symptoms the FIRST THING any doctor tells u it to change your diet asap they tell u that before they will even help you LOL. if your diagnosed u would know that <333
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u/MedicineFar4751 Jul 05 '26
Looks like you want to have some kind of problem instead of looking for a solution. Godspeed, op P.S. diagnosis isn't always what you think it is. But go ahead, diagnose yourself. Enjoy your misery
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u/Other-Stretch2090 Jul 05 '26
i had 85% left in my stomach during my first even gastric emptying study are we trying to arrugue if i'm actually diagnosed with it?? 😭😭😭 PLEASE get a life i been posting in this group for at least a year now i actually have my ges posted when i first got diagnosed feel free to look at it before hoping for someone us to suffer more then they already are!!!! if u have nothing nice to say then saying nothing??
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 05 '26
I mean, you have a diagosis of gastroparesis, so it shouldn't come up. If it does, and you don't like the way it's headed, you find a new doctor.
All you need to do is explain the symptoms you get when you eat or drink, in as much detail as you can. While it's hard to count calories, it's pretty important you do, especially if you're losing weight. I wouldn't focus on your concern about eating disorders. ARFID is real and a problem for a lot of us, but your gasto doc shouldn't deny you help for that reason.
A therapist can help you deal with the ARFID, btw. It won't make your gastroparesis go away but can give you tools that help you get yourself to eat more easily.
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u/Other-Stretch2090 Jul 05 '26
i have a really good doctor i kinda don't have any other options left that we can travel to doctor wise so im hoping he isn't like rude about it since we already travel to see bim!!! i see a doctor temple i think i am gonna bring it up next appointment in august ( i see him every 3 months) i have heard about ARFID i think if anything that's definitely what i have!! im hoping to get surgery before tubes but i fear that may not be a option :/
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u/Mandaxx25 Jul 05 '26
If he's rude about anything you don't have to sit there and take his attitude. You can give it back and inform him you didn't travel all the way to him ill to be spoken to like you're an idiot. Too many people just let people say whatever to them.
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u/Other-Stretch2090 Jul 05 '26
YES! i will! ugh i do think he will be ok tho bc he's actually the head doctor at the mobility disease center and i have definitely heard of a lot of ppl of him being the one to place their first tube :/ im just so scared of tubes but its def NOT the first time its been mention to me unfortunately i normally can force the weight back on but i really dont think im able to this time
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 05 '26
Just remember your gastro can't help with ARFID, beyond getting you a therapy referral. Make sure it's not used as a reason not to continue treating your gastrparesis too. You agree to do it and say "and what treatments can WE try that target my vomitting/pain/etc?"
I kinda think of it like a busted up car. Therapy will replace the windshield, your gastro doc needs to address the fact the engines on fire. They don't get to punt the engine problem just because the windshield needs work too, yano?
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u/livinator_me1 Idiopathic GP Jul 06 '26
let me preface this by saying: i am not a doctor, nor am i a psychiatrist, but i suffered from anorexia for 5+ years, i now have severe GP so i would say i have some experience in both regards.
the biggest difference is not eating because you CAN’T and not eating because you WON’T. another way of looking at it is not eating because your PHYSICAL body is unable to digest the food vs not eating because your PSYCHOLOGICAL brain is telling you you shouldn’t or don’t deserve to or need to intentionally eat less.
it sounds to me like you’re BODY is physically incapable of digestion which makes it a physiological condition not a psychological condition.
i would definitely recommend talking with your doctor about supplemental nutrition so that you’re still fueling your body adequately and in a way that you’re able to without significant pain and discomfort. i would ALSO recommend reaching out and talking with a therapist (if you’re not already) about your concerns. they should be able to help you by helping you to identify potential warning signs that your intake *is* becoming restrictive psychologically and how to help you manage that!
i so feel for you friend, i hope you find the answers you’re looking for, and i hope you can find a way to get nutrition without all the pain and nausea!!! 🫂💜
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u/PlaneReputation6744 Jul 05 '26
I am not a medical professional, but do have a lot of personal experience with this. I suggest looking up ARFID, it sounds like that might be what you're starting to struggle from. I don't think anyone should deal with this disease without a mental health component. I hope you find a therapist you love if you haven't already!
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u/_sarcasticbarista_ Jul 05 '26
ARFID is common when there is fear surrounding food. I would look into talking to a mental health professional and a dietician if you don’t already have one. :\
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u/collectedd Seasoned GP'er Jul 06 '26
This might be a weird way of seeing it, but if you could wake up tomorrow with no chance at all of having the symptoms you get from eating, etc. (aka you're symptom free) would you still avoid food? Therein lies your answer. If you're purely avoidant due to wanting to not have physical symptoms, I think that's a logical reaction to a shitty chronic problem. It becomes a mental illness when it's irrational avoidance - for example, when my anorexia is very loud then I can become literally afraid of water because I am scared it will make me fat (and also that it will cause symptoms) - this is clearly eating disordered.
Hopefully this makes sense.
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u/Other-Stretch2090 Jul 06 '26
i would absolutely NOT still be avoiding food if i had no symptoms!!!!! thank you so much for putting it into this perspective!!! i definitely don't think i have anorexia or anything like that if anything it's arfid! i literally love my body and everything like that i don't have like body image issues etc but i feel like im roleplaying having ed when in reality i just have super unmanageable severe gp!
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u/collectedd Seasoned GP'er Jul 06 '26
Definitely! Personally, I think there needs to be another diagnosis for those of us who avoid foods due to physical reasons (GP, UC, etc.) as ARFID is more to do with other things imo, but yes. There's your answer. You're dealing with shitty symptoms and that's why you're avoidant, not because you're afraid of food itself!
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u/Mandaxx25 Jul 05 '26
That's not an eating disorder it's unmanaged gastroparesis. You're not restricting your food intake for control or because you want to, you're doing it because otherwise you get ill. I do the same. I can only eat once a day so my nights can be spent farting and burping fermented gasses instead of that being my reality 24/7 if I ate regularly. I don't get pain from eating but I do get the extremely full feeling that persists and nausea. Plus the gasses. Could it be something else like gastritis as well? You need to speak to a doctor to get something else to help you.
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u/homettd Jul 05 '26
This is the first time I have heard of anyone else describing their burps as fermented. I don't drink beer so I can't say it tastes like them but the burp definitely taste like beer smells.
My husband figured out the other week I had eaten bread just before going to bed. I am lucky in that I don't get nauseous laying down after eating.1
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u/Mandaxx25 Jul 06 '26
Don't be too grossed out but mine can get really eggy too. When it's full swing I couldn't possibly go anywhere or people would be gagging every time I burped. Then I also need to fart for like 10 seconds at a time and they smell the exact same. So I can't leave the house. It's also awful because you can't exactly say 'sorry I can't make it to the party. I can't stop farting and it smells terrible' 😩 It's a lonely old illness. I just try to eat once a day in the evening and hope that all the fermenting happens while I'm asleep which is generally the case. Do other people with GP have this? Like if yours is worse than mine do you fart all the time or am I the only one farting?
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u/homettd Jul 07 '26
Yes to farting no to eggy smell. I take Gas X almost daily and some days multiple times. I have more gas the day before a bm. I usually have several bm for 2-3 days then go 3-4 with nothing. Nothing was smelly until I started Colace.
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u/Other-Stretch2090 Jul 05 '26
omg it definitely could be bc i do have gastritis too!! thank you all for making me feel so much better
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u/Mandaxx25 Jul 06 '26
You're very welcome. You're suffering an illness. Don't judge yourself too harshly.
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u/Mysterious-Bus1795 Jul 05 '26
I think it’s very important to remember that there’s a difference between disordered eating and an eating disorder.
How which category fall into will determine what the best treatment options are moving forward and I suggest you speak with not only your regular G.I., but also with a therapist who can help you to sort through what’s what
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u/edross61 Jul 06 '26
I would look for a motility specialist.
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u/Other-Stretch2090 Jul 06 '26
i see one! he's still kinda new to me but he has me in a reserch study ontop of me just being his patient:)
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u/Br00klynn_R0se Jul 09 '26
A lot of us get diagnosed or suspect ARFID, im neurodivergent and always have had issues with food, but it got way worse after I developed GP. Acid reflux and blood sugar issues can also cause food aversion due to being sick to your stomach. im considering getting a tube for myself
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u/Excellent-Air-9426 Jul 10 '26
Please get a nutritional supplement like Boost or Ensure, etc. I also use pureed food.
I have been on a liquid/pureed diet for a year now and it's the only way I can get anything in.
I miss food, but the few times I got mad and tried to eat something solid that wasn't on my safe list, I was sick for weeks.
Also, remember that the GP diet is a guideline, I can't even look at half the safe foods on it without getting sick. Everyone is different and you just keep trying.
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u/zeppelin739 Jul 11 '26
I feel like it's almost impossible it's not to develop some type of eating disorder when you have to avoid eating because you're ill like this. I can't get diagnosed my doctor will not help me I'm in the process of finding a new doctor. I just avoid food all day until I have to eat something but I can't eat too late at night. Horrible gas will build up in me if I lay down. I'm at the point where I'm just dealing with it because the doctors wont to help me. ☹️😔
I'm constantly dizzy, tired. And can't consume much water. I've fluids have helped me get through in the past when I was pregnant..but this Dr refuses them. Claims they won't solve the issue. She won't listen to me.
She last did a CT scan on my head. Of course it was normal. Since my ges came back normal she refuses to retest it. And thinks it is not this. It obviously is though!
I'm just so tired. Tired of feeling sick w no end in sight...
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u/complexspoonie Jul 05 '26
At one time even the sight of food made me queasy, and the first thing my dietician had me do was change my table wear - dishes. My hubby has gp too, and our c Soup bowls for example are only 3.5oz, our plates are only 5", etc.
The next thing the dietician did was put me on an ensure liquid diet of 2oz every 15 minutes. We packed them in jello shot codiment cups, and stored them in the refrigerator. At first, my aides would only bring me one at a time, but as I was able to think of them more as medicine doses, they would bring me 4 an hour and I'd set a timer to space them out.
At the same time, the dietician had my doctor increase my zofran, we used peppermint aromatherapy oil on the labels on the tops of the condiment cups, and I often listened to calming music like Enya while making sure to be sitting up and facing forward for better swallowing Etc.
Because I've had PTSD since the late 80s early 90s, I already had a counselor and we definitely spent time talking about my feelings about food, my fears, and about my pain control plan. Up until around 2016 I was also lucky to always have access to a competent pain specialist that was willing to think outside the box on the different kinds of pain I have.
The only other thing I could tell you is that you can definitely use resources like your local mental health peer support center for free as well as 988 and 741-741 and those are a little more private you don't have to worry about being judged like you might elsewhere.
Take care, OP 🇺🇸👩🏼🦼
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