Vomiting for a Month Straight pls help

[kassielainai]

Hello everyone, 17F, 5'2 overweight (Idk the lbs) No substance use of any kind.

I was wondering if anyone had any ideas on what the issue could be based on the symptoms / info below, it's not stress I promise. Or, if anyone had any insight on what to Do next, I have a gastric emptying exam scheduled in a couple days but please let me know what you think, thank you so much!

I’ve been throwing up for over a month now every time I consume anything; solids and liquids, even water, it seems that liquids actually trigger the vomiting more than food. It seems like I'm losing weight but I don't have a scale so I can only go on appearances.

I’ve had constant and extreme nausea for over a year now but it’s gotten worse and I have very little appetite. Back in March and February I had no appetite for 2 months and then it came back but now I just never have it.

I feel really extreme and uncomfortable early satiety and have non stop bad bloating, I’ve had the bloating for 2 years.

I had bad acid reflux and heartburn for over a year and I took the 2 week dose of omeprazole and the reflux stopped then but once I finished the omeprezole it got worse and now it's just masked by the vomiting.

I have bad abdominal pain all over that changes places, I have for a long time and some chest pain in the past couple months.

I’ve been super lightheaded and dizzy which makes sense because I'm likely dehydrated but it’s pretty bad. I also always have a headache and have been having unusual and uncomfortable neurological issues since this year, including memory issues, limb weakness/numbness/tingling, visual hallucinations, difficulty comprehending, ringing and muffled ears, can't focus eyes, blurry eye sections, eye pain, severe light sensitivity, muscles spasms, and it seems like I've suddenly developed minor dyslexia.

My jaw really hurts all the time too along with earaches and face pain.

Sleeping has gotten bad because I always wake up prematurely with really bad lower back pain and can't fall back asleep. I’m always extremely exhausted but it's hard to fall asleep.

It was also difficult to swallow around when the vomiting started but that’s gotten better.

My periods have suddenly gotten very painful this year and exacerbate the nausea and other GI issues.

I got an endoscopy and a colonoscopy but there weren’t any visible issues, haven't gotten the tissue biopsies yet though. I got tested for H. Pylori and it was negative. My celiac blood test was also negative.

My doctor has me on Miralax every day but I didn’t have a lot of constipation to begin with, as shown in the abdominal x-ray which was normal. My labs were normal but I have low vitamin D which I’ve had for a long time.

Background,

I had anorexia for a year and a half back in 2020-2021 and lost 50lbs, then gained it back if that could be causing anything.

There’s no chance I’m pregnant.

I had extremely low iron and took pills for it for a little under a year, now I'm just slightly low.

Never had Covid before to my knowledge

I have clinical depression

I have many other symptoms but I just want to figure this out first.

[Ken_PA]

I think you should ask the doc to switch from the useless PPI drug, to a possibly very useful H2 blocker like Pepcid.

The rationale: if you do indeed have overactive mast cells running amok everywhere, including your stomach, then there is a good chance the Pepcid will help. An H2 blocker is generally used to inhibit stomach acid, but in your case it will also inhibit histamine-based INFLAMMATION caused by your overactive stomach mast cells.

This is a very strong recommendation and there is very very little risk of any harm whatsoever.

[Ken_PA]

Why were you given a PPI (Proton Pump Inhibitor) instead of an H2 blocker anyway? Just because that's the standard thing to do. But you are not standard.

[kassielainai]

I have had really bad acid reflux and heartburn so they just gave me that, it was only the 2 week dose of omeprezole so I haven’t taken it for a couple weeks. They may not be very thorough because I’m a kid.

[Ken_PA]

There is a theory (by MC doc Afrin) that the ligaments and tendons in EDS are malformed because malfunctioning MCs cause then to be made badly. A speculation.

EDS is also highly heterogenous, and if i recall correctly there are 4 subtypes. Ok, more tomorrow.

[Ken_PA]

Oh I forgot, regarding the 'what to do': in addition to pushing for checking for EoE, also get the blood test for hyper cortisolism.

cortisolemia = high blood levels
while the term cortisolism includes that but also the condition caused by high cortisol


As for allergy testing, skin prick testing on the back might be negative but you still can be positive when taking in the food. That's because MCs do not circulate as blood cells do. The ones that reside in the skin of the back might very well not have the same receptors as the MCs in the GI lining.

[Ken_PA]

"I’ve been super lightheaded and dizzy..."
1) Might be dehydration (low circulatory volume).

2) Or orthostatic hypotension, which is a feature of mystery conditions including Ehlers Danlos Syndrome and CFS.

We can't differentiate between the two now, but if you get well hydrated and the symptom persists, that is telling.

Btw, are you hyper flexible or inflexible? (EDS, a Connective Tissue Disorder with many mysterious other featiures)

[kassielainai]

Yes I've looked into Ehlers Danlos before and have some of the things on the diagnostics checklist, but not severe enough I would say for that, though the symptoms have a lot of similarities to mine. I am flexible but not in an extreme way. I can Do some thing flexibility wise that others find hard, but there are some things I really can't Do that a lot of people can.

[Ken_PA]

"i questioned whether you used to be a teacher because you're good at explaining things, more than just someone with a lot of health /medical knowledge."

Well, thank you :)  It's my aim to get you to be expert on your own condition because that's the best chance you have of getting better. Understanding + relentless self observation + intelligence + motivation to experiment. That's rare, and you have the possibility of being a stupendous turnaround. You might end up giving talks one day, like TEDx.

Btw, if I say things like "you should do this and that", that isn't being imperious, it's just efficient. If I waste time saying, "well it's not my place to day but maybe you should possibly think of perhaps doing so and so...", that just wastes mental effort. I figure you know that anyway, I'm just being sure to be clear about it.

Okay, now that I have cleverly paved the way about giving talks, try this talk, which is about very successful self-observation and self-experimenting in the setting of a mystery immune condition: https://www.youtube.com/watch?v=0ka9WBEijhk

It's just 11 minutes, and it's also about how mainline establishment medicine often can't handle unusual cases. And sometimes ignores or suppresses what it can't handle.

[kassielainai]

I understand, I didn't take offense to you saying I should Do something. Yes, I have definitely noticed that people ignore things when they don't know what to Do/ can't handle it, that's most of what I hear when people with undiagnosed symptoms / conditions talk about their experiences with doctors.

[Ken_PA]

"I will let my doctor know after the gastric emptying test tomorrow and see what he says."
Nope, should be told *before* because your situation might affect the test. Or vice versa, you throw up and then the test is over. (They put food into your stomach and then take x-rays at intervals. You probably have looked that up.) I'm guessing you're just going to see some tech tomorrow that does the test.


"Did you used to be a teacher?"
I'll have to mull why you said that :)

[kassielainai]

I was thinking of telling my doctor today but he's already off work and my appointment is early in the morning. I was planning on just trying my absolute best at not vomiting like with the colonoscopy prep, which was horrible, but I managed to barely vomit. I also think I vomit much easier if I drink liquid and I am just gonna have oatmeal. i questioned whether you used to be a teacher because you're good at explaining things, more than just someone with a lot of health /medical knowledge.