u/haylw

I’ve gotten down to one food still (graham crackers) and I’m not really tolerating that. I am so malnourished. No hospitals can help me, they won’t tube feed me. I can’t tolerate any food but I just want to fucking eat (pardon my language) I’m on ketotifen, cromolyn, allegra, pepcid and benadryl as needed. What am I supposed to do, if not die?
I get extreme GI symptoms no matter what I eat, internal itching/buzzing, brain fog, I crash by 3-5pm and feel like garbage. Does it even matter anymore?

I’m 88lbs 5’7. My outpatient team is taking way too long to help me, I’m on public insurance so my resources are limited. I’ve been trying to get some single case agreement set up to go out of state but that process is lengthy, but I’m running on borrowed time.
I keep posting in here hoping someone will give me a magical answer but I fear my time is running up and I am genuinely scared.
I don’t want to die

I have been in and out the hospital at main campus cleveland clinic (in my home city) and they have been absolutely NO help. I am severely malnourished and unable to tolerate foods or formulas. They will not give me enternal feeding because I can’t tolerate a formula or NG tube. All they do is tell me to follow up with outpatient team but I am worsening as the days go on.

I need care, but I’m wondering how good the care is with UPMC in complex gastrointestinal cases? What would they do for me? I don’t want to drive hours and just be sent home after an ER visit.

But first I wanted to ask the general public who struggling with this. I am at a loss at what is wrong with me and what is going on, no provider has been a help to me.

But over the past 7ish months I experience INTERNAL itching/burning (and also leads to abdominal pain) all throughout my body, mostly after eating and sometimes it can be localized to my gut alone. It doesn’t matter what I eat.

For those of you who might suggest it’s MCAS, I am actively being treated for it by using mast cell stabilizers.. HOWEVER, they are NOT helping with this internal itching/burning I get after eating. (I’m on cromolyn and ketotifen, allegra, pepcid.. none are targeting this very well).

So what is it that I am experiencing. Please help it’s driving me crazy and causing me so much stress.

So last night I believe I was reacting really badly to a food. I had diarrhea followed by EXCRUCIATING abdominal pain and nausea. It was pretty close to 10/10 pain. No other symptoms really followed, so I’m not sure if it was anaphylaxis or not. Usually I have adrenaline surge, itching, high HR and high BP— but everything was relatively “normal” except the GI.
I ended up taking a benadryl and it helped some but I ended up falling asleep because it knocked me out.

Today, I got some bloodwork done and my AST/ALT were SKYROCKETED.
AST: 361 (normal range: 10-35)
ALT: 507 (normal range: 10-35)

I’ve only ever had them slightly elevated (40) when I have reacted to something. But this is actually insane. I’m not sure if this is even MCAS causing it or not, but I’m curious if this has been something significant for anyone else when they have reacted? Or is there something else completely going on that I’m unaware of?

I’m severely malnourished because i CANNOT tolerate ANY food. and my GI has been worsening as time goes on and nobody has done anything about it or knows what to do.

I’m on Cromolyn, Pepcid, Allegra, Ketotifen and Benadryl as needed.

I have been in and out of the hospital all year. Inpatient bound because I have been so unstable and malnourished. Nobody can help me, they don’t understand what is going on or how to help. Hospitals are useless. They discharged me today knowing I have 0 foods I am able to tolerate or eat, my weight is deathly low. I am reactive to literally EVERYTHING I put into my body. All my tests have come back normal (tryptase, histamines, prostoglandins, leukotrines) I’m so lost and defeated. I can’t find not a singular food I don’t react to, or any formulas. I wanted to try to get a PEG tube placed, but inpatient was reluctant about that because they said I’d need to try corpak (NG tube) placed first— I have tried that before and it did not go well, I could not tolerate that without constantly gagging, and that puts me at risk for aspirating.

I don’t know what to do. Doctors are not helping me.
How am I supposed to eat? I’m really scared about how my reactions are manifesting.
I have been getting mouth blisters, diarrhea, dizziness, lip numbness, mouth numbness, ear pressure that goes down to the sides of my neck, tingling in lips (sometimes), HR goes up.
I have also dealt with extreme fatigue, adrenaline surges, tight throat, SOB, whole body tingles, internal itching…

What are my resources? I’m on state/public insurance in the state of Ohio, I’m super limited to where I can go. Cleveland Clinic SUCKS! I have been at Main Campus every single month and they have done absolutely nothing but let me get worse and worse. Things are so serious. I am 5’7 83lbs. They discharged me today with no plan.

I have tried to look around for out of state care, not sure how I would even pay for it. I can’t go to ACUTE Denver, nor Gaudiani route because they don’t accept public insurance or insurance at all. I am 100% disabled.
I’ve looked into Brigham and Women’s Health Hospital for their inpatient but the likeliness of my insurance providing a prior authorization slim to none.

I think I am really going to die and I don’t know how to compartmentalize with it anymore. I am so depressed and feel robbed, I don’t know how it’s gotten to this point.
Can anyone help me, be my friend, support me, call me? If you are in the state of Ohio, or close to my city please DM ME!

Hi everyone,

I’ve been trying to figure out what’s going on with my GI system for over 6+ months now and I’m wondering if my symptoms sound consistent with gastroparesis. It seems to be getting worse over time, and I’m not really tolerating any foods without getting terrible pains.

For background, I have POTS and hEDS, GERD, and I’m currently being evaluated for MCAS. I’ve been dealing with worsening GI issues and extreme malnourishment, and I feel like my digestion has slowed down a lot.

My symptoms include:

•	Dull cramping and uncomfortable pressure in my stomach/abdomen (located primarily on left side)

•	Burning sensation in my gut, especially after eating

•	Internal itching/crawling sensation (hard to explain, feels like irritation inside my stomach/intestines)

•	Sulfur-smelling gas and stools

•	Alternating constipation and diarrhea

•	Feeling like food just sits in my stomach or like there’s a big iron ball, tender to touch

•	Symptoms often get worse after eating, and my bowel movements make me feel sick afterward

•	I also get episodes of throat tightness, chest tightness/burning, and respiratory symptoms that feel like reactions (which is why MCAS is suspected)

I also noticed that I sometimes react to certain supplements/medications (for example potassium citrate powder caused a delayed reaction after about a day).

I’m scared that I might have gastroparesis or severe dysmotility, especially because I’ve become malnourished and I’m worried my stomach isn’t emptying properly.

For those of you diagnosed with gastroparesis, does this sound familiar?

Did your symptoms start like this? And what testing helped confirm it for you?

Any advice is appreciated.