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]

Hi, the second thing that comes to mind is hypercortisolism (high levels of the hormone cortisol, from stress and/or other factors). Have your docs done the blood test for cortisol? There is an association between high cortisol and anorexia. High cortisol might contribute to having anorexia, and anorexia can make cortisol levels worse. There is an association between high cortisol and depression.

As for other symptoms, do you happen to have a rounded "moon" face? Body hair or acne? Even the blurry eyes and brain fog also fit with high cortisol. It's a condition that takes years to diagnose, and partly because it is rare.

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The first thing that comes to mind is generalized overactive immune system behavior. E.g., please take a look at a recent post on this forum "Daughter (13F) experiencing headaches + limb numbness, prickling, weakness". But things don't have to match exactly. Think of the general pattern.

Both of these ideas are for conditions that are 'heterogenous", meaning they vary a lot between individuals.

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I'd look at the constant vomiting as just an offshoot of the actual, central underlying problem - even though it is the most troubling symptom for now.

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"I have many other symptoms..."
They can be very important and might give major clues.

----------------------

I'd want the cortisol blood test for starters, because there's at least some chance of that pinning down the mystery. You can also find patient accounts on youtube, to compare yourself.

[Ken_PA]

Although high cortisol can be from stress, it otherwise can be from a very rare benign tumor - without stress as a cause.

Is your blood glucose high?

[kassielainai]

Hi, thank for commenting. I don't have body acne, I have a round face but I always have so I don't know if that is moon face or not. My cortisol levels have not been looked at but it's something I have thought about. When I got my labs in August, my glucose was 98mg/dL after fasting. I hadn't been throwing up at that point. My symptoms list is very long, I can try and put it in a comment if you'd like, lmk.

[Ken_PA]

"My cortisol levels have not been looked at but it's something I have thought about."
Bravo to you. Here's a moon face, which is due to the pattern of fat deposition and btw can also result from long term prednisone Rx: https://youtu.be/UePgRFZ3uus?si=C6EBG8zjCs44r5Vu&t=522
That patient had a benign pituitary tumor.

"When I got my labs in August, my glucose was 98mg/dL after fasting."
Well, that's almost over the 'normal' limit. If your postprandial BG is not high, that's a clue (to cortisol doing gluconeogenesis).

"I hadn't been throwing up at that point."
Well, presuming no toxin and no infection, then maybe cortisol is causing GI inflammation. And it is progressing.

"My symptoms list is very long, I can try and put it in a comment if you'd like, lmk."

Yes, absolutely. By the Dx'ing principle of Occam's Razor, we can start by assuming they are all related.

[kassielainai]

Here are my symptoms

Vomiting after consuming everything
Bad abdominal pain when eating / drinking
Throwing up bile
feeling of it taking effort to breathe
Potential weight loss
Giant hard painful bumps around body
Worsening chest pain
Nonstop loud abdominal noises/ movement
Leg cramps as if I was on period
Blood spots all over body + in mouth
Thin stool
Sudden trouble discerning where sound is coming from
yellow stool
Pelvic pain
Phantom smells
Early, shortening, much more painful menstrual cycle
Feeling of being on period when not
Bruises on fingers
Potential acquired dyslexia
constant feeling of something in / moving up and down esophagus
small white bump clusters on inner lips, maybe fordyce bumps
vibrating muscles
Lot of acid regurgitation
painfully exhausted but can’t fall asleep
Unwarranted sore breasts
Some petechiae scattered around body
Extremely hard to keep eyelids open, not sleepiness
visual hallucinations
swelling bumps around body
Intense pressure moving from abdomen through chest + neck
really bad lower back/hip pain inhibiting sleep
dry cough
hard to swallow
narrower throat feeling
very out of breath
very lightheaded
sudden weakness/pain/tingling in limbs
limbs falling asleep suddenly / slight control loss
bad neck pain, often burning
bad shoulder pain, often burning
heart palpitations / rapid heartbeat
dizzy
Tiny painful hairs all over that are barely in skin, not ingrown
burning pain around different parts of body (every day)
rash on neck, bunch of tiny red bumps, lasted a couple weeks
stumbling / balance issues
intense aching / pressure everywhere above shoulders
Confused
Increased saliva output
Struggling to process info
Out of it
Hard to read
Bad jaw pain
intense pressure in ears
sore neck / throat, not like when sick
sharp pain in eyes
plugged ears / pressure
painful lymph nodes
bad back pain
dairy products started tasting weird
Face pain
Spider angiomas
pinching/needle feeling around body
orange urine
Joint pain
easily sore feet
decreased urine output
muscle spasms
Funny bone like pain in head
extreme early satiety
feeling of not finishing bowel movement
chest pressure
chest pain
strong smelling urine
itchy all over
hot feeling in chest
mood swings
Excess sweating / quite bad smelling
rib pain
lot of burping, painful/aggressive
stomach pressure
weird feeling with heart
sudden extreme hunger, no warning
sudden blurry vision
brain fog
memory loss, especially rapidly worsening short term memory
earaches
very hard to focus / concentrate (zero past history w/ this)
little/no appetite
restless legs
chronic headaches, often really bad
really light sensitive & physically sensitive eyes
pain behind eyes
sore skin all over
stomach movements / bubbling  
hip / side pain
Small irritating bumps on waterline
Bad noise sensitivity
lot of hiccups
feeling of needing to pee nothing comes out
skin smells like chlorine
hot feeling in stomach
ringing ear
muffled ears/hearing
hard to focus eyes
lot of gas
feeling of not fully emptying bladder
large lump in armpit, went away after 4-5 months
slow wound healing + easy scarring/hyperpigmentation
intense constant bloating
chronic acid reflux, often very painful
chronic heartburn
super nauseous always
hot ears
recent gluten sensitivity (labs show not celiac)
hot flashes, especially at night
abdominal discomfort  
scalp issues
Extreme fatigue
chronic abdominal pain, various kinds / places
sudden waves of extreme tiredness
general discomfort
blotchy red skin after shower
can’t eat early in the day
skin problems on jaw / neck
Mucus in stool, had for a long time
Swollen eyes in morning, as long as I can remember

[Ken_PA]

"17"
That's not a typo, right?

Btw, would you say you are a perfectionist?

And also btw, yes cortisolism can cause slow gastric emptying. You can ask the techs doing the exam if they have seen such a case. It's a long shot; but you never know what useful info you might pick up, while you're forced to hang around for hours.

[kassielainai]

Yes I am 17, I would say that I have lived my life as a perfectionist but veering away from that a little.

[Ken_PA]

Wow, that is quite a list, kassie. You are quite a trooper to keep going onward. So if you like, I'll hang in with you on this as long as you keep replying. Strike while the iron is hot.

I now think you have a mast cell disorder. MCs line the GI tract, the skin and the airways. They have over 100 receptors (sensors) and 200 mediators (secreted biochemicals), so they can cause a wide variety of problems.

And severe gut dysbiosis - have you had lots of antibiotics over the years? MCs are at the heart of sensit.

Examples:
"feeling of needing to pee nothing comes out"
Irritable bladder, because of overactive mast cells lining the urinary tract. Possibly. The bladder wants to empty what it thinks is some toxic substance, but since you are restricting water, it hasn't anything much to empty.

"rash on neck"
Classically skin MCs, reacting to something. Btw, it's said that the skin reflects what happens in the gut. Sort of mirroring.


But you have more things wrong also. Anything in particular you'd like to discuss, from the long list?

Back to cortisol: yes, perfectionism is maybe linked to that. At least it's been looked into, so there was sufficient justification to do that.

[kassielainai]

I don't believe I've had antibiotics before. Maybe the exhaustion is something to discuss, I am so tired, even more so than when my iron was at a 3 and the iron pills didn't ever make me feel better. Also, the hair thing. I haven't been able to find anything like it on the internet.

[kassielainai]

My headaches are also one of my biggest problems. I had them constantly of course when I was eating restrictively but they never really went away, and they have just gotten a lot worse this year, - it's constant.

[Ken_PA]

You already feel pretty sure you have delayed stomach emptying, right? The test is just a formality. Hopefully they do not go astray on the *why* of that.

Some not-so-random thoughts:

- does food ever get stuck in esophagus? (possible eosinophilic esophagitis)
- is it possible you have acalculus cholecystitis (inflammation/destruction of gallbaldder with no stones seen on scan)?

- do you have Fx of odd inflammatory/immune-system conditions? lupus, sjogren's, raynaud's, RA etc?

- what was your earliest health oddity?
- aside from "Swollen eyes in morning, as long as I can remember" Do you mean dark under eyes, as in allergy?

[kassielainai]

Delayed gastric emptying has most if not all my symptoms so I think it could definitely be likely. Food has felt like it is stuck in my chest before but not like I'm choking, just like it's not moving. I haven't had any other diagnoses so I'm not sure if I have the gallbladder issue. I have been overweight since I was a toddler and had earaches a lot growing up, still Do. I had pin worms as a kid and have had low vitamin D for most of my life. My eyelids are swollen or puffy when I wake up, I don't think it's an allergy and I don't think my under eyes are especially dark.

[Ken_PA]

With your brain power and drive, you must certainly have theories. What are your top two?

[kassielainai]

I am honestly not sure, there are so many things that have so many of my symptoms. I was thinking maybe it could be an ovarian thing but it could be caused by restrictive eating damage. I am not a hypochondriac but I've definitely even considered cancer.

[Ken_PA]

"exhaustion"
That's very non-specific. But is common in hyper immune dysfunction. Consider even the naming of Chronic Fatigue Syndrome, a mystery immune condition. Or consider the example of synthetic interferon, used as an Rx for hepatitis. It causes fatigue, and then so would endogenous interferon that the immune system might unleash. (That's just ajn example of the many ways the immune system can cause tiredness.) Plus low O2 and low water contribute.

If we can get your stomach calmed down so you can absorb water, and also get sufficient sleep, a lot of side issues might be resolved. Or what if you ask for IV liquids for hydration? That seems a fair thing to do.

Anemia? Well, maybe poor absorption of B12 and/or iron because of gut inflammation. So that'd be a secondary effect. (Or was it from autoimmune destruction of RBCs? Probably not.)

"Also, the hair thing. I haven't been able to find anything like it on the internet."  and "Tiny painful hairs all over that are barely in skin, not ingrown"
Well, how about linking to MCs and eczema or contact dermatitis or folliculitis?

[kassielainai]

Sure, I have pili multigemini, Do you think that could be related?

[Ken_PA]

"Food has felt like it is stuck in my chest before but not like I'm choking, just like it's not moving."
Any doc should have jumped to eosinophilic esophagitis over that, and done an endoscope biopsy of the esophagus, looking for the eosinophils with staining the snipped tissue sample. Eosinophils don't normally belong there. They count the numbers of eos found and that gives the Dx. Also, EoE sufferers have to severely restrict the foods that cause the sensitivity reactions. Some even have to get a food tube surgically inserted into the stomach to bypass the esophagus.

(Right, you don't choke because it's in the esophagus, not the trachea airway.)

I'm going to leave this answer by itself because to me it stands out as easily diagnoseable. Whereas so much of immune dysfunction is not easily diagnoseable.

You really really should pursue this most of all right now because it has a clear pathway of diagnosis to treatment.

[Ken_PA]

"I have pili multigemini, Do you think that could be related?"
I'd have to say probably - but yet I don't know how offhand. It'd be too much of a coincidence to have various oddities being unrelated, though.

"have had low vitamin D for most of my life"
vit D is anti inflammatory, so being low exacerbates your pro-inflammatory tendencies. I'd supplement it.

[Ken_PA]

"My headaches are also one of my biggest problems. I had them constantly of course when I was eating restrictively but they never really went away, and they have just gotten a lot worse this year, - it's constant."
Although I very much dislike trendy fad diets, for some people the carnivore diet does wonders - because it is the ultimate elimination diet while preserving calorie intake instead of starvation. Are you familiar?

[kassielainai]

Yes I am, but I have just never liked the taste of meat, I don't eat it mostly because of that. I don't generally eat restrictively since I stopped being anorexic but  still have headaches always. I haven't eaten anything in days though and not much over the last month now because of the discomfort it causes.

[Ken_PA]

"I am honestly not sure, there are so many things that have so many of my symptoms. I was thinking maybe it could be an ovarian thing but it could be caused by restrictive eating damage. I am not a hypochondriac but I've definitely even considered cancer."

Cancer is always possible - but not likely at all in your case.

No, your likely cause is immune dysfunction. Your most diagnoseable aspect of that is the EoE. For starters, it's not the end all, be all. It's the tip of the iceberg.

It is not unsual for someone like you to get wrongly accused of being a hypochondriac by docs who don't know what to do. Even wrongly referred to a shrink.

Tired now? This was quite a marathon session :) Lots of progress though, I'd say.

[kassielainai]

Hehe, well thank you so much for your insight!

[Ken_PA]

"I haven't eaten anything in days though and not much over the last month now because of the discomfort it causes."
That could be a problem for sure. Maybe:
- try plain white sugar just for calories?
- look up "elemental nutrition" which gets Rx'ed for EoE. Maybe you could DIY with that approach.
- butter fat, or polyunsaturated oils?


There are two ways foods can give you a problem:
- your immune system gives a hypersensitivity reaction, pretty much like allergy
- the food feeds bad gut bacteria, which then exude bad chemicals
- leaky gut lets proteins into the bloodstream, which then causes havoc with the immune system

(that's *three* ways :)

[Ken_PA]

Okay, at it again tomorrow?

[kassielainai]

I'm free now but didn't want you to get bored, we can keep going. What Do you think about the jaw pain? Also, I haven't gotten the tissue biopsies from the colonoscopy and endoscopy yet, but it seemed like they took one from the back of my throat (if not then it was just damage from the scope bc there was a blood spot)

[Ken_PA]

"it seemed like they took one from the back of my throat (if not then it was just damage from the scope bc there was a blood spot)"
It's good that you are so observant. But no, that would not have been a snip biopsy there for EoE.

"My jaw really hurts all the time too along with earaches and face pain."
Probably inflammatory molecules (such as cytokines and bradykinin and Substance P) leeched from the ear to the jaw and causes inflammation there. Probably not infection. Everything is mostly probabilities, except for Dx'ing EoE via biopsy which is much much more certain. Eosinophils do the damage to the esophagus, but Mast Cells summon them there.

"had the bloating for 2 years"
Probably gas from gut bacteria doing fermenting.

"tissue biopsies from the colonoscopy and endoscopy"
I hope the pathologist has been told to look for inflammatory cells and not just for cancer, which IMO would be a wasted opportunity.

"we can keep going"
You are tough, kassie. Once you get over this, you might take over the world :)

[kassielainai]

I never actually mentioned the thought of cancer to them, (or anything for that matter bc I didn't want them to feel insulted), so I think they are just testing for whatever is standard. I'm not really sure what I should Do at this point. My GI doctor doesn't really give me much info or instructions. He just said (to my dad) that my biopsy results won't be back for a week or so and my next follow up appointment from the original one will be in December.

[Ken_PA]

"painfully exhausted but can’t fall asleep"
Both cortisol and histamine can cause insomnia. MCs make histamine. The sleep aid Sominex is the same thing as the antihistamine Benadryl/diphenhydramine, which is an H1 receptor blocker. The class of antacids such as Tagamet and Pepcid are actually antihistamines (H2 blockers). Histamine is instrumental in producing stomach acid. You might react badly to histamine containing foods, look them up some are surprising.

Btw bodyfat, especially visceral fat, is pro-inflammatory. Especially fat around the internal organs. Also, the very process of losing weight is anti-inflammatory. If you can lift weights a little but without that destroying you, then do so. That will help to retain muscle. Muscle produces anti-inflammatory molecules like IL-10. But do not push through suffering like Rocky, that is bad for you.

Your goal is to do everything anti-inflammatory that is possible, and not do anything pro-inflammatory.

Here is the grand theory. Your are genetically susceptible to excess inflammation. Then your GI problems are *driving* systemic inflammation which manifests in many ways, including ear canals. And also middle ear, unless you are taking NSAIDs which cause the tinnitis.

"I have clinical depression"
Who wouldn't, in your shoes? :)  Except maybe it's situational, and as you improve it will lift.

"I have just never liked the taste of meat"
But can you tolerate it? If so, you probably have to force yourself, for nourishment not for pleasure.


(Do you know who Rocky is?)




  

[kassielainai]

Yes I know who Rocky is. I'm really too tired to Do anything right now, even while laying down I think to myself, "I'm so tired, I need to lay down". I’m very dizzy and lightheaded. I can't really eat, and can barely drink anything either. I have extreme early satiety so even just a sip or 2 of water has me feeling really nasty, and of course the nausea and no appetite. I took ibuprofen every day for over a year but stopped and barely take them unless I have certain pain so that isn't a super common thing for me. I have looked at the low histamine diet before when this all began. I've had depression since a was pretty young.

[Ken_PA]

"I'm really too tired to Do anything right now"
Okay, that's certainly fair enough. So your job for tonight is to do progressive relaxation or mindful meditation or whatever, and try to get at least 8 hours sleep. I know, it can be like torture to try.

Also, assess if it's really tiredness or is instead better characterized as malaise.


"I'm not really sure what I should Do at this point"
Push for them to investigate for EoE. Also watch some videos of EoE sufferers, that are your age if possible. That gives you a beach head to later expand other inflammatory diagnoses.

Just about every treatment for autoimmune and other inflammatory conditions involve suppressing the immune system.

I'm going for a walk around the block. More tomorrow.

[Ken_PA]

You can mentally prepare an effective case to present that they should investigate for EoE. Make it compelling enough that they are convinced. The food sticking in the esophagus is 'almost' pathognomonic for EoE. (You'll notice I present these terms so you can look them up, as you become expert in your own condition. I'm not merely showboating with jargon.)

[kassielainai]

Thanks :)

[Ken_PA]

You're very welcome  :)

Btw, ibuprofen for a year might have damaged your stomach. Look up the 'mechanism of action' for that, aka pathophysiology.

[shadowmed]

I am sorry to hear of the vomiting and other problems. It must be very wearing. I think you are doing the right thing by getting checks done. One thing to consider is food allergy. A friend of mine’s daughter was unwell for several years before she was diagnosed with several food allergies by a senior consultant immunologist. She was allergic to maize, milk and other foods. She suffered vomiting after eating certain foods and felt permanently unwell, but did not suffer anaphylaxis.  She is much better now and living an active life. I hope you find solutions. It sounds like you’ve been through enough

[kassielainai]

Thank you for your response ! I've never had any allergies before, though I know they can manifest later in life it's just kind of unusual. I have done a bunch of elimination diets before but nothing really made a difference. Even water causes this reaction so I'm just not sure but will look into it.

[Ken_PA]

Think of your stomach and bladder as each being similarly inflamed. The response of each is to want to empty itself.

Think of anybody's arm being badly inflamed from sunburn. Even the simple pressure of being touched is then unbearable. Just as the pressure of water in your stomach is now unbearable to the stomach lining.

Yes, you likely have food sensitivities as we've discussed; but you are for the time being way beyond that.

You haven't eaten for 4 days now? I'm assuming you haven't been able to hold water down for days also. So tell your father to call the doctor to demand to know what they are going to do about that. "We don't know what to do, so you're on your own" is of course not a valid answer. Merely being given a PPI acid-reducer drug is not sufficient - obviously it's not enough.

The doctor then might be required to admit you to the hospital to get IV hydration fluids and very possibly IV 'parenteral  nutrition'. (That doesn't mean parent, the 'para' + 'enteral' means bypassing the intestine, as the liquid food goes directly to the bloodstream.) Another name is intravenous feeding.

You, or anybody, has enough of fat stores so it's not a matter of starving after only 4 days or even 2 weeks. But electrolyte imbalances might be a significant problem, along with severe dehydration.

Another possible option, maybe BETTER for you, is to go instead to the ER and get the IV fluids there. After that, there is even such as thing as 'home total parenteral nutrition', which may or may not be an available option to you.

Or else call the doctor and ask if they think you should go to the ER after these 4 days. I don't know. This is for doctors to decide, not me and even not you. We don't know what risks you are under at this moment.

Just make 100% sure not to say anything even remotely outlandish so no one can claim that it is emotional and just all in your head. They are not your friend.

I'm worried about you, let me know how things go.


(Your blood glucose might be elevated just because you are dehydrated.)

[kassielainai]

That makes sense. Alright, I will let my doctor know after the gastric emptying test tomorrow and see what he says. Did you used to be a teacher?

[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.

[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’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]

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]

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.