u/Wooden-Map-3188

34 y/o Female, 5'3", currently 100 lbs. I've recently been diagnosed with all of the above after struggling for over a year with my symptoms. In March of 2025, I had a gallbladder attack. That led to me having my gallbladder removed in April of 2025, and by that time I had lost 15 lbs in a month (went from 150 to 135).

After the gallbladder removal, symptoms did not improve: upper abdominal bloating and pain, early satiety, food sensitivities. By August of 2025, I was down to 125 lbs. I finally had a colonoscopy and upper EGD in January of this year, which found gastritis with bleeding, esophagitis, duodenitis, and GERD. By that time, I was 121 lbs. I also have diverticulosis. My GI put me on a PPI (Protonix) which made my symptoms way worse, and I started having worse reflux plus esophageal spasms. My intake became more and more limited, despite strictly following GERD/Gastritis diet protocols. I had a follow-up EGD in March that showed continued Gastritis. I was then diagnosed with chronic gastritis, and we did ANA panels to screen for autoimmune gastritis, but they were normal.

By April of this year, I was down to 115 lbs. I started seeing a nutritionist who hooked me up with Kate Farms. Because my insurance won't cover it, I've been paying out of pocket and the 1.0 standard is cheaper, so that's what I always get, but even that causes the same symptoms for me. In May, things began to really escalate. Intake became extremely limited (eggs, potatoes, gluten-free bread, rice cakes, jello, some fruit, heavily dependent on Kate Farms), and I started following a low-residue, low-FODMAP diet after an independent review of my MRI from the gallbladder attack by another specialist showed delayed gastric emptying. My nutritionist started sending me samples of the Kate Farms 1.4 formula, but I still continued to lose weight. Additionally, I started to have symptoms of POTS/Dysautonomia. I've always had issues like blacking out vision upon standing, dizziness, etc. But I never thought anything of it until I started to realize that my BP was really low. Over a month of measurements, my BP averages were in the 80s/50s. I also started to have episodes of Tachycardia when standing, walking, showering, and even sometimes randomly while at rest. At first, my heart rate would go up into the 120s/130s, but now I've been getting readings into the 160s-180s just from standing up. I've also always had symptoms of EDS but I didn't know what it was.

I finally went to the Underwood Center in Houston in July to see a neurogastroenterologist. He's the one that pointed out the possible EDS/Dysautonomia overlap causing all of my symptoms plus the GI issues. At that appointment, I was 111 lbs. We did a Gastric Emptying Study which showed 74% retention at 2 hours, but only 9% at 4 hours. Because of the 4 hour result, I was not diagnosed with Gastroparesis, but my symptoms and the 2 hour results pointed more to Functional Dyspepsia with impaired accomodation. He put me on Voquezna and referred me to cardiology. He's hesitant to try any neuromodulators yet because they can make my symptoms worse.

Over the following 3 weeks, my symptoms rapidly worsened and my intake became limited to liquids only, but even that results in severe abdominal pain, bloating, nausea, reflux, regurgitation, etc. I also started having days of constipation followed by one day of horrible diarrhea, then it starts all over again. I followed up with the Underwood Center, and my doctor decided to trial Remeron (the lowest dose). By day 2, my BP tanked into the 70s/40s and I ended up in the ER because I couldn't stand without passing out. By this time, I was down to 105 lbs.

We are now in August, and my symptoms have been severe for the last 3 weeks. I am profoundly weak, I'm down to 100lbs (an 11lb loss in 1 month), and I'm very limited on oral intake. I use one Kate Farms shake/day, and try to work in as much "real" food as I can so that my stomach doesn't forget that it still has to at least TRY to do its job. I rely on plain mashed potatoes, broth, jello, gluten-free waffles, and popsicles, but I'm only able to get about 500 calories a day. I'm barely getting any water because that also fills me up and I almost always regurgitate it, even when I take small sips. I always put electrolytes in my water, but I can't use the high-sodium ones because they make me even more nauseated. By the end of the day, I'm SO full, bloated, painful, nauseated, and I'm up all night with reflux and regurgitation.

The Dysautonomia symptoms are also way worse. When I stand, I feel like my legs will give out from under me, and I have a sensation of pins and needles at the soles of my feet. My vision goes black, I get dizzy, and my face/lips go numb. Even just walking to the kitchen raises my heart rate to the 150s/160s. I stay in bed because even just sitting at my desk to work, I get random episodes of tachycardia where my heart rate will fluctuate wildly between the 80s and 120s. I'll feel really dizzy, have vertigo, and feel short of breath. My HR went to 185 yesterday just from taking a shower. When it gets really high like that, I get this big bright spot in the center of my vision that keeps getting bigger and bigger until I sit down. I can't do basic housework anymore - it's completely exhausting and always gets my heart rate into the 150s to 160s, even when I move very slowly. I don't walk down to check my mail anymore. I don't drive myself anywhere anymore. I had a friend take me to the grocery store the other day, and I almost passed out on the way back to the car. I've had more bloodwork to check for all autoimmune disorders (lupus, RH, Sjögren's, etc); all were normal. My iron, B12, magnesium, thyroid panels, CBCs, and CMPs are all normal.

I finally get to go see a cardiologist in Houston who specializes in Dysautonomia this week, then in 2 weeks I get my EDS evaluation. My question is: how do I advocate for myself to trial a feeding tube? I feel like no one is taking my level of malnutrition seriously, and I feel like it's definitely contributing to all my other symptoms getting worse really fast. My physique is terrible - I can see every one of my ribs, my hip bones are protruding, my legs have a massive gap between them, etc. I don't have any muscle mass left - I can't even pick up my 20 lb dog anymore. But every time I bring it up to my GIs, they always tell me that there are too many risks and side effects, and they'll only do it if I'm in a critical/life threatening state. My problem is, I don't WANT to get that bad. I don't want to have to be literally dying to get the nutritional support I need. I don't want anything surgical or permanent; I just want to get the nutrition I need to function normally and be able to walk to my kitchen. I want to get the nutrients I need, get some weight back on my body, and feel at least a little bit normal and stable again. Honestly, I'm terrified.

Is there anyone out there who has the same type of issues that I do? Nothing is helping, everything that could help could make other issues worse (like the neuromodulators making Dysautonomia worse), and I don't have all the puzzle pieces put together yet to get the full picture. Has anyone been in that weird grey area with the overlap of these conditions and been able to get nutritional support?

EDIT: I am not asking if anyone knows what could be wrong. I know what's wrong. I've been diagnosed. I'm looking for anyone who has had the same overlapping issues as I do and whether or not they have been successful in advocating for nutritional support.

34 y/o Female, 5'3", currently 100 lbs. I've recently been diagnosed with all of the above after struggling for over a year with my symptoms. In March of 2025, I had a gallbladder attack. That led to me having my gallbladder removed in April of 2025, and by that time I had lost 15 lbs in a month (went from 150 to 135).

After the gallbladder removal, symptoms did not improve: upper abdominal bloating and pain, early satiety, food sensitivities. By August of 2025, I was down to 125 lbs. I finally had a colonoscopy and upper EGD in January of this year, which found gastritis with bleeding, esophagitis, duodenitis, and GERD. By that time, I was 121 lbs. I also have diverticulosis. My GI put me on a PPI (Protonix) which made my symptoms way worse, and I started having worse reflux plus esophageal spasms. My intake became more and more limited, despite strictly following GERD/Gastritis diet protocols. I had a follow-up EGD in March that showed continued Gastritis. I was then diagnosed with chronic gastritis, and we did ANA panels to screen for autoimmune gastritis, but they were normal.

By April of this year, I was down to 115 lbs. I started seeing a nutritionist who hooked me up with Kate Farms. Because my insurance won't cover it, I've been paying out of pocket and the 1.0 standard is cheaper, so that's what I always get, but even that causes the same symptoms for me. In May, things began to really escalate. Intake became extremely limited (eggs, potatoes, gluten-free bread, rice cakes, jello, some fruit, heavily dependent on Kate Farms), and I started following a low-residue, low-FODMAP diet after an independent review of my MRI from the gallbladder attack by another specialist showed delayed gastric emptying. My nutritionist started sending me samples of the Kate Farms 1.4 formula, but I still continued to lose weight. Additionally, I started to have symptoms of POTS/Dysautonomia. I've always had issues like blacking out vision upon standing, dizziness, etc. But I never thought anything of it until I started to realize that my BP was really low. Over a month of measurements, my BP averages were in the 80s/50s. I also started to have episodes of Tachycardia when standing, walking, showering, and even sometimes randomly while at rest. At first, my heart rate would go up into the 120s/130s, but now I've been getting readings into the 160s-180s just from standing up. I've also always had symptoms of EDS but I didn't know what it was.

I finally went to the Underwood Center in Houston in July to see a neurogastroenterologist. He's the one that pointed out the possible EDS/Dysautonomia overlap causing all of my symptoms plus the GI issues. At that appointment, I was 111 lbs. We did a Gastric Emptying Study which showed 74% retention at 2 hours, but only 9% at 4 hours. Because of the 4 hour result, I was not diagnosed with Gastroparesis, but my symptoms and the 2 hour results pointed more to Functional Dyspepsia with impaired accomodation. He put me on Voquezna and referred me to cardiology. He's hesitant to try any neuromodulators yet because they can make my symptoms worse.

Over the following 3 weeks, my symptoms rapidly worsened and my intake became limited to liquids only, but even that results in severe abdominal pain, bloating, nausea, reflux, regurgitation, etc. I also started having days of constipation followed by one day of horrible diarrhea, then it starts all over again. I followed up with the Underwood Center, and my doctor decided to trial Remeron (the lowest dose). By day 2, my BP tanked into the 70s/40s and I ended up in the ER because I couldn't stand without passing out. By this time, I was down to 105 lbs.

We are now in August, and my symptoms have been severe for the last 3 weeks. I am profoundly weak, I'm down to 100lbs (an 11lb loss in 1 month), and I'm very limited on oral intake. I use one Kate Farms shake/day, and try to work in as much "real" food as I can so that my stomach doesn't forget that it still has to at least TRY to do its job. I rely on plain mashed potatoes, broth, jello, gluten-free waffles, and popsicles, but I'm only able to get about 500 calories a day. I'm barely getting any water because that also fills me up and I almost always regurgitate it, even when I take small sips. I always put electrolytes in my water, but I can't use the high-sodium ones because they make me even more nauseated. By the end of the day, I'm SO full, bloated, painful, nauseated, and I'm up all night with reflux and regurgitation.

The Dysautonomia symptoms are also way worse. When I stand, I feel like my legs will give out from under me, and I have a sensation of pins and needles at the soles of my feet. My vision goes black, I get dizzy, and my face/lips go numb. Even just walking to the kitchen raises my heart rate to the 150s/160s. I stay in bed because even just sitting at my desk to work, I get random episodes of tachycardia where my heart rate will fluctuate wildly between the 80s and 120s. I'll feel really dizzy, have vertigo, and feel short of breath. My HR went to 185 yesterday just from taking a shower. When it gets really high like that, I get this big bright spot in the center of my vision that keeps getting bigger and bigger until I sit down. I can't do basic housework anymore - it's completely exhausting and always gets my heart rate into the 150s to 160s, even when I move very slowly. I don't walk down to check my mail anymore. I don't drive myself anywhere anymore. I had a friend take me to the grocery store the other day, and I almost passed out on the way back to the car. I've had more bloodwork to check for all autoimmune disorders (lupus, RH, Sjögren's, etc); all were normal. My iron, B12, magnesium, thyroid panels, CBCs, and CMPs are all normal.

I finally get to go see a cardiologist in Houston who specializes in Dysautonomia this week, then in 2 weeks I get my EDS evaluation. My question is: how do I advocate for myself to trial a feeding tube? I feel like no one is taking my level of malnutrition seriously, and I feel like it's definitely contributing to all my other symptoms getting worse really fast. My physique is terrible - I can see every one of my ribs, my hip bones are protruding, my legs have a massive gap between them, etc. I don't have any muscle mass left - I can't even pick up my 20 lb dog anymore. But every time I bring it up to my GIs, they always tell me that there are too many risks and side effects, and they'll only do it if I'm in a critical/life threatening state. My problem is, I don't WANT to get that bad. I don't want to have to be literally dying to get the nutritional support I need. I don't want anything surgical or permanent; I just want to get the nutrition I need to function normally and be able to walk to my kitchen. I want to get the nutrients I need, get some weight back on my body, and feel at least a little bit normal and stable again. Honestly, I'm terrified.

Is there anyone out there who has the same type of issues that I do? Nothing is helping, everything that could help could make other issues worse (like the neuromodulators making Dysautonomia worse), and I don't have all the puzzle pieces put together yet to get the full picture. Has anyone been in that weird grey area with the overlap of these conditions and been able to get nutritional support?