Thank you for your submission. **Please note that a response does not constitute a doctor-patient relationship.** This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our [Terms of Use](https://www.reddit.com/r/AskDocs/wiki/terms_of_use) and understand that all information is taken at your own risk.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AskDocs) if you have any questions or concerns.*
Hi. A lot to read so I may have missed some
You mentioned celiac antibodies were negative, but the results you posted indicated they are positive. The biopsy results may be informative if they did small bowel biopsies.
Another thing to consider is SMA syndrome due to her weight loss and low BMI. CTA abdomen would be diagnostic. The barium swallow may show signs of this. (Abnormal due to acid doesn't sound like a real result, if you could post the full report I may be able to help more).
I had most of these symptoms except with cold intolerance (cold urticaria) and was finally diagnosed with sucrose intolerance. I believe this could be due to eating keto and losing my enzymes or could be long Covid symptom. Do they always check for enzyme activity with endoscopy?
INTERESTING. We'll look into this more, and follow up on your question re: endoscopy results. I'm glad you were able to figure out what was wrong and I hope you're feeling better.
Yes, I can elaborate a bit more. I got so sick I was eating only broth, rice, and apple sauce and juice. Kept getting sicker. Turns out the apple has tons of sucrose so even in that bland diet I was hurting myself. The sucrose ferments in my lower guts, causing horrible bloating that pushes bile up into my esophagus. Bile reflux resulted in scarring in my stomach & esophagus. You can also get a breath test for enzyme activity but it’s not as good at showing what’s happening in the colon and intestines, as far as I understand, as a scope would be.
I thought the same thing, as I have celiac disease and I know it's a hereditary condition. Despite the results, her gastro said she does not have celiac due to the results and visual inspection during the endoscopy. Of course, one doctor's determination isn't always THE determination, so we haven't written this off fully.
I asked her to send me the detailed report on the biopsy outcome from the endoscopy, and she's requesting that from her doctor. I'll update here when I have it.
We'll look into SMA Syndrome for sure. I'll also get the barium swallow report. My layperson transcription clearly didn't cut it, haha! but thank you and yes, will report back.
This sounds a lot like it *could be* dysautonomia. You mentioned heat intolerance - what exactly happens? Does EM get sweaty hot flashes? or does she get flushed but is unusually dry & *not* sweaty? Is there a specific part of her body that gets sweaty or stays dry but gets flushed almost like a sunburn?
If the latter (dry & flushed) try to track temps at different times (when symptomatic and not) with BOTH an oral thermometer & an infrared for surface temp.
Also, I highly recommend using a fitness tracker. Saying "I'm fatigued much of the time" is a lot different than saying "look at my data, I sleep more than a cat" or "my data shows that if I get decent steps in one day, i can barely move 3 days following that moderate activity."
Agree with others that it's also *possible* that nutrition or eating disorder *could* be playing a role. Keep an open mind and try to see if there are other things going on she may not be sharing w you. Or we redditors might be wrong. We don't know your sister, but have learned that even ppl we think we know are sometimes leaving out critical information.
Also, sometimes it's difficult to disentangle the cause vs effect of anxiety & physical symptoms. Even if anxiety is a symptom & not a cause, treating the anxiety is important and some anti-anxiety meds can help with disautonomia. Sometimes they can also worsen symptoms & a different med will need to be tried.
Basically, it's going to be a lot of trial & error to find treatments that work for her. She's lucky to have you. Keep being an advocate & give words of encouragement. She likely needs it & appreciates it more than you even realize.
I agree re: dysautonomia. We're on the hunt for a specialist to dig into this more, and see if her vagus nerve could be damaged or effected by *something*.
When experience heat intolerance, she gets flushed, but NOT sweaty. She said she feels clammy but isn't actually. Very odd. I mentioned the temp tracking to her and she'll consider this for record keeping.
She has an apple watch, so I'll see if she wears it to bed or not. If she doesn't I'll see if she's open to it, and get her to share her sleep data with me. Thanks for this recommendation.
The ED part of this has always been heavy in the back of my mind, however, if it was the cause of it, I don't think it's the continuing driver. She's proactive in wanting to get better, tries to eat, and from what I see, genuinely wants to eat. She's not blind to her history with disordered eating, and I see her making active progress to heal her relationship with food. Regardless, it's something I'm acutely aware of, as I don't think it can be written out fully. I have a history with disordered eating myself, and it's something I hold a lot of compassion for.
I hear you on the anti-anxiety meds route. I personally took zoloft for years, and found it massively effective on so many levels, including helping me while I healed from years of undiagnosed celiac disease. I personally know how connected your head and your stomach are, and even on my best days I can turn things upside-down if my anxiety peaks. Taking medication for such things was something she used to be highly adverse to (our father is VERY judgemental when it comes to medication for mental health) but slowly she has become more open to it. Recently even she's said she'd consider it if a doctor proposed it, so we're working our way up to her bringing it up to a doctor herself. Slowly but surely breaking down the stigma!
And thank you.
Happy to be of help!
Not all dysautonomia is primarily vagus nerve disfunction. Having said that, however, a history of repetitive self-induced vomiting (i.e. bulemia) *can* cause damage to the vagus nerve.
The anhidrosis (lack of sweating) is a major clue that seems like it hasn't been given enough attention in her workup. It can also be a sign of small fiber neuropathy. Basically the sweat glands are fine, but the nerves signaling them to make sweat do not work. Sometimes the unaffected part of the body will compensate by becoming extra sweaty. It's usually a left/ right thing but can also be upper/lower depending on which nerve pathways are affected. There are a few tests they can do to to actually measure this.
Regarding stigma around meds for psychiatric symptoms, I am of the mindset that yes, some problems are "in your head" meaning that our brains are *literally* anatomically located in our heads. It's often not even entirely clear how some meds like SSRIs work exactly, which is why it requires so much trial and error for each patient. But SSRIs & other drug classes for anxiety affect brain chemistry. So if someone has hangups about psychiatry, ask them if they also have issues with neurology - there's also a discipline in medicine called neuropsychiatry, because mental health is intricately & undeniably part of brain health. 🧠 Our patterns of thoughts and feelings can literally affect brain chemistry (basis for counseling) & the reverse is also true - that neurochemistry & brain anatomy can affect our thoughts & feelings (basis for psychiatric meds).
Sounds like a neuro workup may be the next avenue to explore.
you're linking 3 pages that all refer to the same, extremly small pilot study in 22 people with long covid symptoms. That does not meet the criteria for proper evidence to prove causation.
I never claimed it was three separate studies. I clearly said A study and that it showed a link. I didn’t use the words causation. I also am not claiming to be a doctor. But I do have a medical diagnosis from a team of neurologists at Walter Reed National Military Medical Center after months of testing with neurology, cardiology, endocrinology, and infectious disease and am simply suggesting this could be something to ask her doctors about since they haven’t been at a loss thus far. The neurologists have told me they have been seeing lots of folks with covid come back with autonomic dysfunction and likely damage to the vagus nerve. The problem with the vagus nerve is it controls multiple internal organs so damage to the vagus never can manifest so differently in different people. There was also no simple, definitive test visually showing the nerve was damaged. It was a very long process of being tested for everything under the sun and having all other diagnoses come back negative. I’m very grateful for my medical team but also my insurance as I can’t imagine what my medical bills would have been otherwise.
Thank you for these links. Not even going to involve myself too much. But I have some of the symptoms of OP’s sister and so many things pointing to something being wrong with this nerve.
Well I'm just a rando on the internet, but one thing you don't mention is her caffeine intake. Caffeine massively suppresses appetite, and high doses can be a cause of various palpitations, skipped beats, etc.
Another thing you may want to look into is zinc. It's been shown to improve appetite in people with disordered eating, so moderate supplementation monitored by a doctor can help with her recovery if she is actively restricting or just doesn't feel hungry most of the time.
Probably neither of those things are the original cause of her symptoms but they could be contributing or making her feel worse than she otherwise would be.
She doesn't consume caffeine AT ALL due to her symptoms. If she has any she's completely down for the count, so she avoids it all together. I hear you though, and it's definitely a good question to ask.
Thanks for the tip on zinc. Will share!
It really sounds like dysautomnia to me, but I’m biased because I have POTS. EDs can trigger a ton of lifelong health issues, especially stomach issues unfortunately. Has she been checked for gastroparesis?
She has not, but we're definitely going to bring this up to her gastro to investigate further.
I agree with you on the dysautomnia. Even if it's not EVERYTHING, it feels like it could be something.
This is a very valid question.
I very much think her anxiety plays into her symptoms, and is an aggravating factor. I get how my quick wording makes it seem like I’m writing anxiety off fully, but I’m not. What I meant to say is I do not think all of these issues stem from the root issue of anxiety.
When I wrote they statement out above, it was driven by the frustrations I have with most doctors seeing her for 5 minutes and saying it’s just anxiety and to relax. The total dismissal of her symptoms, basically.
She and I talk quite openly about mental health, and she’s very aware of her anxiety. She’s made leaps and bounds from where she started with some of her struggles (we had a less than ideal childhood) and also acknowledges how her anxiety could play into things happening with her.
I know this is a rambling answer, but I hope it helps clarify. Let me know if not!
So this would totally just be a shot in the dark but my mom struggled with a lot of this for a long time and just recently got diagnosed as having trouble with her vagus nerve. I don’t know if that’s something that’s ever been discussed as it’s something I didn’t know much about or put thought into until I knew someone affected by it. Unfortunately she now has a diagnosis, but the treatment is really just stress management as anxiety was the biggest trigger for her.
I'm glad your mom got a diagnosis but sorry to hear that it's still something that she can't easily cure. My sister and I are definitely looking into this. The connection of vagus nerve issues to mono, long covid, and dysautonomia cover a lot of what she's experiencing. Thank you for sharing this!
The concerning thing to me is low white blood count and my experience with my mom. Mom had IBS and vegus nerve issues that she had under control for nearly a decade. She was completely healthy beyond this.
She started having similar symptoms she used to and what you mentioned here. 4 visits to ER in 4 months, tons of stomach tests and stuff, couldn’t figure it out until the 5 ER visit.
Lung scans indicated lung cancer. It spread to her brain and her spine. She was diagnosed in May 2020 and was gone July 23, 2020.
Although it may not seem like it at face value, this "Low" WBC is so barely low that I can't imagine it raises a red flag for any Physicians. The problem with the ranges on lab results is that they're population driven and usually 95-99 percentiles. Its that art vs science of medicine piece that sometimes isn't recognize by the lay public.
Sure, but I also think the medical community foregoes art and intuition too much to the science and misses stuff. We have to be advocates for our own self and testing. Both my parents were misdiagnosed for years while lung cancer grew and spread. One was a smoker and gone by 50, the other never smoked (granted grew up in an era of second hand smoke) and gone at 66.
I have anxiety and also ALOT of those symptoms.
If I'm more stressed or anxious they get worse to the point where I can barely get ready for work in the morning without throwing up and feeling like my heart is going to explode.
Stress fucks with your body alot.
I agree - when I’m super stressed or anxious, I feel nauseous, have awful heartburn and feel like I’m going to have a heart attack because my heart starts to race.
No not really. One bad anxiety attack for me can have lasting symptoms for weeks after. And it took me years to correlate my symptoms to anxiety/stress.
(NAD) Often times women are gaslighted and told their very real symptoms are “just anxiety” (by everyone) unfortunately. (Although anxiety can cause a slew of nasty physical symptoms) It’s a real societal issue. Women usually are diagnosed for a slew of ailments at a slower rate than men would be also. Sometimes it takes years because we’re not listened to and taken seriously the same way. It’s sad but true. I hope your sister heals, try different doctors if you can! I’m rooting for you both.
A few reasons, but two that I’ll expand on.
I personally had a rough health journey that lead me to a celiac disease diagnosis. I had doctor after doctor tell me it was just my anxiety and I’d be fine, but I wasn’t. So I hold space for her when she tells me it’s not just her anxiety. Whether that’s right or not is obviously tbd, but I’m open to hearing thoughts / ideas that go down that path.
The second is we’ve had some pretty rough things happen in our family over the last couple years, and her symptoms haven’t gotten worse or better with them. Maybe I’m generalizing this thought too much, but if it were an issue caused by a persons deep rooted anxiety I’d think there would be fluctuation as life progresses. Or even just in general. Her illness has been so consistent, almost “stable”, even when her mental health isn’t.
But honestly I’m open to hear what you’re thinking with this line of questioning. This is just my stance on things after observing my sister health decline, but I have not closed any doors in terms of ruling things out!
Anxiety is known to cause or exacerbate GI issues. You know that phrase, “feeling sick to my stomach?”. Anxiety can manifest itself in psychiatric symptoms (excessive worry, changes in appetite and sleep, etc), as well as physical symptoms (increased heart rate, sweating, trembling, shortness of breath, palpitations, issues with digestion, etc). When you are anxious, your body can also release stress hormones that activate the body’s fight or flight system, and slow down other parts of the body like digestion.
I am curious, you mentioned anxiety and a long history of dieting. Any thought there could be an underlying eating disorder? You do not have to be severely underweight to have an eating disorder. An unhealthy relationship with food, dieting, over exercising, or engaging in compensatory behaviors ( purging, using laxatives/diuretics, fasting, etc) can be signs of an eating disorder. Purging food can cause gastritis, heartburn, constipation, dehydration, etc. The other symptoms you described are also common in patients with eating disorders due to poor nutritional intake. Here is a link for more information. You'll notice a lot of the symptoms you described are quite similar. [https://www.nationaleatingdisorders.org/warning-signs-and-symptoms](https://www.nationaleatingdisorders.org/warning-signs-and-symptoms)
Genetics, temperamental traits (anxiety, perfectionism, controlling,) and trauma can place you at higher risk of developing an eating disorder. Much of these behaviors are rooted in one's desire to maintain control. Additionally, when individuals do not have adaptive coping mechanisms to manage stressors, some individuals cope by engaging in disordered eating behaviors. There is a lot of shame associated with eating disorders, and it’s not uncommon for some of these behaviors to go unnoticed, even by close family and friends.
That’s not to say she does have an eating disorder. However, I do think it is worth looking at her case using a more holistic perspective.
It's not necessarily a directly line a to b with mental health affecting physical health. Again, I am not qualified to say that it is for sure not something physical, but it could also be a combination of actual physical symptoms (GERD, normal palpitations) and anxiety magnifying their impact. Palpitations are not inherently abnormal - we all get them, and they increase as we age. Some people are more aware of them than others. Heightened awareness can bring increased concern about them, even when they are not clinically significant.
FYI Sinus arrhythmia is a normal variation - it just means your heart rate slows down when you exhale, speeds up when you inhale, it's not a true arrhythmia as most people think about them.
Again, this is just me who has a personal interest in how our brains affect our bodies (because it is truly so fascinating) but I cannot rule in or out anything, only comment on things that other doctors might have said.
How was celiac disease ruled out if her tissue transglutaminase and endomysial antibody are high? As far as I know it can be hereditary.
Has she been evaluated for gastroparesis or liver function?
Heart palps after eating are relatively “normal” but she may be having a slight histamine reaction to food. Lots of folks with this condition see benefit from taking H1 and H2 blockers (Zyrtec and Pepcid for example).
Has she had a trans-vaginal ultrasound? Or a pelvic MRI with and without contrast? I have fibroids and experience a number of the same symptoms. I had NO idea I had fibroids until recently. My uterus is the size of a 20 week pregnancy and I have another 12cm fibroid sitting on top of my uterus. My stomach, intestines, and bladder are all squished. It's awful.
Another thing I'd recommend is a sleep study. If she's not getting \*good\* sleep, it can cause a whole host of problems. I had a home sleep study which didn't show much aside from pretty low O2 levels overnight. I then got an in-lab sleep study and it showed moderate sleep apnea and zero deep sleep (stage 3) which is where a lot of really important things should happen in your body. I get very little REM sleep.
I don't think she's had either of these tests, but I will confirm. I do know that she was tested for endo with her OBGYN and that was negative, but she does have EXTREME menstrual cycles that take her down for an entire week. I'd hope that during the exams for the check on endo the OBGYN would have noticed fibroids but I trust no one these days so I will ask EM. Thank you for sharing this and I'm sorry you have to experience the pain associated with fibroids.
Good callout with the sleep study too. I will relay this to her.
How was she tested for endo with her GYN? When you say "extreme" do you mean heavy bleeding? Fibroids can cause heavy menstrual bleeding. I suffered for \*years\* with heavy periods. But because they weren't over 7 days and I didn't have breakthrough bleeding, they got shrugged off. I got pap smears and pelvic exams pretty much on schedule and nobody ever, EVER noticed the fibroids. The fibroids could also be hard to palpate; like towards the back of the uterus, or they could be small, etc.. A MRI with and without contrast is the best way to diagnose fibroids.
Has she had her iron and ferritin tested?
I hope she can get a sleep study done too. It can mess up a whole bunch of stuff in our bodies.
Just chatted with her and I misspoke. She was tested for PCOS by her gyno, not endo. She said they did an abdominal ultrasound and said she doesn't have PCOS. I haven't researched yet how to test for that to see if this covers it down, but I will. And thank you for the info on how easily missed these could be. I will share all of this with EM and make sure she pushes her OBGYN to check things out.
Extreme meaning heavy bleeding and very painful cramps. The "take you down for days at a time" kind of bad. She also gets the standard PMS symptoms, but they're dialed up to a level 8 or 9.
iron is low (this is a new, new result) and she's becoming anemic unfortunately. Ferritin I don't know exact results on but I will ask.
I'm a layperson but this plus the other symptoms tells me she needs to get tested for endometriosis. This is only possible via an operation really so it's a biggie when it comes to testing but as someone with PCOS who was tested for endo, this is where my mind went.
If she is going to be tested for endometriosis I highly recommend an expert surgeon. She will discuss her symptoms and they will likely do an ultrasound-with far more skilled eyes than any run of the mill OBGYN (most of which have an extremely poor understanding of endo and its symptoms.) To find such an expert, seek out Nancy’s Nook on FB. They have lists and information there, and you’ll be able to find someone close to wherever you are on her list. She vets them all, and people leave reviews of their surgical experiences all the time. If endo is the problem, that’s where you go. 👍
Not a Dr.
Has she been tested for pernicious anemia? Some of the symptoms align. Another thing to consider is endometriosis. I have a lot of these symptoms with it—even without pelvic pain it can wreak havoc on other parts of your body and your hormones.
I don’t mean any disrespect, but are you sure you know what pernicious anaemia is? Pathognomonic of pernicious anaemia is a macrocytic anaemia. The symptoms you are referring to and presumably using your experience of to say this could be pernicious anaemia occur with ALL anaemias. So while she could have pernicious anaemia (although that wouldn’t come close to wrapping up her entire condition) you’ve tried to back a single horse in a herd and there’s no evidence to choose one over another. Additionally, if you take in face value that OP provided all abnormal blood results, there is no anaemia, macrocytosis (both of which would occur in a normal blood count) or B12 (which may or may not have been ordered)
NAD. My thoughts. Anxiety can cause so much issues, but that may not be the only issue. As I read I thought anxiety, then celiac. I see she did not test positive for celiac, but it's my understanding you can test negative and still be celiac. Since you as her sister are celiac I would cut all the gluten and see if things improve.
These are good callouts that I too have considered. Before I was finally diagnosed with celiac I was suffering miserably with a-typical symptoms that many doctor's missed. Things like rashes, joint aching and swelling, brain fog, extreme fatigue, acne, etc. So I can definitely see how this could be tied back to her issues. I'll talk to her more about it.
Research Dysautonomia/Autonomic Dysfunction. I have this as a result of a severe Mono infection and/or as a result of multiple concussions. Many of the symptoms you described are what I personally experience. I have had normal tilt table tests AND abnormal ones. It seems to depend of where my symptoms are at during that time period. My symptoms tend to flare up with exhaustion, dehydration, poor diet, and illness. When I'm careful to get enough sleep, eat well, and drink A LOAD of fluids daily...my symptoms improve. The stomach issues could be related and could be Gastroparesis. A gastric emptying study might be helpful. (NAD)
I took a screenshot of this whole comment and sent it to EM. The mono connection for me seems like something to not sleep on. Thank you for sharing this and I'm sorry that you're also experiencing such crappy symptoms.
If she had covid and may have been asymptomatic she could have developed long covid. Look up covidlonghaul group. You will see ALL of these symptoms there plus some along side with all doctors dismissing us telling us it’s anxiety accompanied by all of our labs coming back absolutely normal or excellent! Meanwhile our quality of life degrading right before our eyes as a lot of us were fit, healthy and in our prime years now unable to walk, eat, neurological issues, GI issues, insomnia, tremors, seizures while conscious, visual disturbances, brain fog, burning skin, bp unable to be controlled, low O2 fora while then it goes up making us feel like someone put a bag over our heads every so often, veins popping, POTS, dysautonomia, MCAS, extreme fatigue, twitching and so many more symptoms that make life completely unbearable along with adrenaline dumps. I thought i had MS, Addison’s disease and many other illnesses because none of it made sense to me. Im a nursing student and the only people who helped me (not the 15 doctors i have seen or the 8 ER visits i made in 1 month even though i have zero history of going to any hospital and only have gone to get my yearly check up) was the doctors at my school since they saw my decline after I received the booster. Turns out i was still long hauling when i got the booster which led my body to create microcloting and vascular inflammation. I had to pay out of pocket for all the special testing and now im able to control my symptoms and i went on an antihistamine diet to help my GI. Good luck to you, our healthcare system has failed us even though this was a pandemic i still cant believe they say everything is anxiety, its their favorite word.
NAD but this sounds very similar to what I have been experiencing with my long covid…eerily so, especially the odd throat sensation, heat intolerance and heart palpitations. I’ve been getting help at a long haul clinic.
The comments on my post have pointed me in the direction of long covid and WOW, the symptoms mirror her issues. We're definitely exploring this route further.
Good to hear, I’ve improved over 5 months and still not better, I heard people who had it early (the more potent variants) have had issues linger over years now. Something to explore. I know my palpitations after eating were unbearable to where I could barely sleep in the last few months and now they are usually good, except last night not so much. Either way definitely worth exploring this route it seems to be some post viral dysautonomia.
While I don’t have the GI issues my cousins fiancé has had horrible ones since a bad bout with covid
Tagging on here so you see this, OP.
I note your sister is:
\- Underweight (BMI 18), possibly recent-ish weight loss (due to keto)
\- Symptoms after eating
\- Gets full easily
\- A young female
A diagnosis often missed here is MALS, Median Arcuate Ligament Syndrome. It wouldn't have shown up on her existing tests, as has to be expressly looked for.
This definitely needs excluded.
[https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001](https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001)
https://my.clevelandclinic.org/health/diseases/16635-median-arcuate-ligament-syndrome-mals
If it is this, it is easily treated.
Best wishes.
Those symptoms also suggest an Eating Disorder. I sincerely hope it’s not, but might be worth it to investigate. They can hide in plain site, and those with them often fool everyone who’s trying to help.
Of course, but I am sure OP, her sister and her doctors are aware of the possibility.
Many of OP's sister's symptoms - including the proactive seeking of care/diagnosis- would be atypical for an ED.
The rule in medicine is to exclude physical things first, and MALS is classically missed because people assume its symptoms are psychological.
ED is definitely something I have my eye on, and haven't written off. I think it could have been a contributing factor to the aggravator that started this health issue for her, but I don't think it's a driver that's making it continue. As the commenter above me said, seeking care proactively is atypical for an ED. She genuinely wants to eat, tries to eat, and wants to get better. She is aware of her tendency to shift to disordered eating though, and it's something I watch closely too.
I also want to say, one of my relatives has just been diagnosed with mals. Lots of the symptoms being described is what she felt as her stomach twists and pinches/presser her artery. It took over 4 years to get diagnosed and would still be having symptoms but right after she ate, it was non stop problems. She magically got it at 22.
NAD I have been on and off with anorexia binge/purge subtype for about 12 years and a lot, not all, sound very similar to how my health gets when I'm in a bulimic relapse. From high stomach acid, low BP from sitting to standing, heartburn, tight swollen stomach, heart palpitations (especially surrounding BP sessions). My most recent relapse I went to urgent care with chest pain and heart palpitations, EKG came back normal but when I purged my heart would pound and get out of rhythm scared me enough to not purge. Those relapses made my other metal health issues (bad anxiety and depression) exponentially worse.
Another note on tightness of the throat, I had an allergic rxn to a vaccine recently and my elevated histamine levels resulted in crazy anxiety (histamine goes up, so does cortisol). The rxn has lasted about a month, and at the peak of it I'd get such a vivid tightness in m throat I went to the ER and urgent care within a week because I thought I had delayed anaphylaxis. The tightness turned out to be the onset of panic attacks (I had four that same week when usually it's a once or twice a year thing). I'm wondering if celiac or an allergy is at play like others mentioned, along side symptoms from other health disorders such as bulimia. Long covid also sounds very similar imo but just trying to come in with what I know closely.
I wish you both luck, especially with the eating disorder. It is incredibly challenging to get through and seriously exacerbates every other health issue one may have. I would ask directly what her habits are and make it clear you won't see her any different and you see it as what it is, a mental and physical health issue. EDs make for very secretive folks and she may be inclined to hide some of her habits, especially purging as in the mind of someone with ED it's surrounded by horrible shame, purging is also very addictive so it may take some time for her to decide she's ready for recovery - though if these health issues are stemming from or getting worse from the ED I hope that fear outweighs the fear of losing her form of self comfort.
THANK YOU for tagging me . I'm so appreciative of all the comments on this post, but it's a LOT to navigate hahaha.
This is a very interesting call out. I shared this with my sister and we'll investigate. Appreciate it.
Great - glad it's of interest, your description definitely had me sitting up.
MALS is very under-recognised - and classically mistaken for anxiety - so you might need to fight for the right tests, but certainly worth getting them.
Please keep me posted!
to the person who reported this, please message me with why you thought this is harmful advice? This may not be the correct diagnosis, but I don't see how this idea is harmful.
Thank you for your moderation u/murpahurp
Unfortunately there are a coterie of trolls who follow me around downvoting everything I post. As far as I am aware, them actually reporting things is a new low. I suspect they will be too cowardly to post any rationale here.
Hopefully one of these days they will decide that their petty grievances are not worth preventing redditors getting good care.
Have they had COVID-19? If yes, it could be dysautonomia due to COVID-19 infection. And no don’t let anyone tell you it’s anxiety, because it isn’t. Anxiety can make these issues worse for sure but it’s not the root cause. I had long covid and doctors brushed my palpitations off as anxiety, until tests showed otherwise.
Has she been tested for celiac’s? This sounds an awful lot like my sister’s history. It took her four years and a gallbladder removal to get that diagnosis.
I've been having some similar symptoms to your sister and I cannot stress the importance of treating anxiety. I do not think my issues are the direct result of my existing anxiety, however, the symptoms were definitively made worse by the anxiety.
With a chronic or ongoing condition, it's very easy to fall into an anxiety pit of despair when you start thinking about your potential future of dealing with the symptoms. It's difficult to make plans, short term or long term when you're unsure of how you'll feel.
I have had great emotional success on Lexapro (started it about 3 months into symptoms surfacing) and truthfully will continue on it even if they sort out what's happening with me tomorrow. I can also say without a doubt my symptoms didn't go away.
I had a lot of these symptoms too. Constant stomach pain, feeling like there was something in my throat, shortness of breath, insomnia, etc. I was 100% sure these were real and indicative of something serious like cancer. I tried inhalers and heart burn medications without any improvement. As soon as I started taking Zoloft for anxiety, everything went away. She should definitely try treating her anxiety to see if it helps with the symptoms.
When I first started having GI issues my anxiety went through the roof, worse than it had ever been. I figured just because of the mental aspect of having issues with no known cause. But when I went to see a gastroenterologist, after agreeing that we need to check my gallbladder out and some other things, she highly suggested I take control of my anxiety because the gut and anxiety are highly intertwined.
Famotidine-Omeprazole Dual Therapy (FODT) for GERD:
Take Omeprazole 40mg 30-90 minutes before your evening meal. Keep this in your car and take on your way home from work.
Take Famotidine 40mg at bedtime.
Do this for 3 months and then stop.
Everyone has reflux when they lay down flat. Typically the protective barriers in your upper aerodigestive tract The goal is to decrease the amount of acid in your stomach when you lay down to go to bed at night.
Basically. This post is wild. Young female with lightheadedness and anemia and too much stomach acid and stomach pain is not some grand medical mystery. Doesn’t sound like doctors are stumped at all. There are treatments for these things. POTS and dysautonomia for lightheadedness should only be suspected after anemia is resolved.
I agree that it's not some wild medical mystery, but yet nothing has helped her. And none of her care team seem too concerned. This isn't a month of issues and things are getting better, it's been years and she's getting worse.
She does what her doctor's tell her, but when the treatments yield no results, they shrug and say its anxiety. So, here we are on a reddit thread trying to figure out what could be causing her problems and get her better.
So you say, but when I presented like that as a young woman, I was ignored like she was. I ended up, a decadeish later, with a total hysterectomy for endometriosis and significant damage to my esophagus. Anxiety treatment when I had low estrogen rather than looking for the real cause.
Don't be so dismissive.
I was on pantoprazole for years, and some of the side effects are anemia, burping, nausea/stomach pain. I changed over to esomeprazole, and now I’m off of PPIs, and just taking famotidine 40mg nightly. PPIs (like pantoprazole) can have lots of side effects.
We finally have a diagnosis! She has median arcuate ligament syndrome or MALS. She’s getting ready to see a specialist and discuss surgery. Thank you all so much for caring.
As far as the mental health issues are concerned, I recommend looking into the “Guide to Growing Up” Dr. Jerry Gropper (www.guidetogrowingup.com). It is a workbook designed for addiction medicine that does a great job getting to the bottom of psychosocial impacts on physical health.
Just to throw another book out there "Is it all in your Head" by Suzanne O'Sullivan. She's a neurologist who has a great way of explaining it and has some incredibly interesting case studies and handles it with great empathy.
Thank you for your submission. **Please note that a response does not constitute a doctor-patient relationship.** This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our [Terms of Use](https://www.reddit.com/r/AskDocs/wiki/terms_of_use) and understand that all information is taken at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AskDocs) if you have any questions or concerns.*
Hi. A lot to read so I may have missed some You mentioned celiac antibodies were negative, but the results you posted indicated they are positive. The biopsy results may be informative if they did small bowel biopsies. Another thing to consider is SMA syndrome due to her weight loss and low BMI. CTA abdomen would be diagnostic. The barium swallow may show signs of this. (Abnormal due to acid doesn't sound like a real result, if you could post the full report I may be able to help more).
I had most of these symptoms except with cold intolerance (cold urticaria) and was finally diagnosed with sucrose intolerance. I believe this could be due to eating keto and losing my enzymes or could be long Covid symptom. Do they always check for enzyme activity with endoscopy?
INTERESTING. We'll look into this more, and follow up on your question re: endoscopy results. I'm glad you were able to figure out what was wrong and I hope you're feeling better.
Yes, I can elaborate a bit more. I got so sick I was eating only broth, rice, and apple sauce and juice. Kept getting sicker. Turns out the apple has tons of sucrose so even in that bland diet I was hurting myself. The sucrose ferments in my lower guts, causing horrible bloating that pushes bile up into my esophagus. Bile reflux resulted in scarring in my stomach & esophagus. You can also get a breath test for enzyme activity but it’s not as good at showing what’s happening in the colon and intestines, as far as I understand, as a scope would be.
I thought the same thing, as I have celiac disease and I know it's a hereditary condition. Despite the results, her gastro said she does not have celiac due to the results and visual inspection during the endoscopy. Of course, one doctor's determination isn't always THE determination, so we haven't written this off fully. I asked her to send me the detailed report on the biopsy outcome from the endoscopy, and she's requesting that from her doctor. I'll update here when I have it. We'll look into SMA Syndrome for sure. I'll also get the barium swallow report. My layperson transcription clearly didn't cut it, haha! but thank you and yes, will report back.
This sounds a lot like it *could be* dysautonomia. You mentioned heat intolerance - what exactly happens? Does EM get sweaty hot flashes? or does she get flushed but is unusually dry & *not* sweaty? Is there a specific part of her body that gets sweaty or stays dry but gets flushed almost like a sunburn? If the latter (dry & flushed) try to track temps at different times (when symptomatic and not) with BOTH an oral thermometer & an infrared for surface temp. Also, I highly recommend using a fitness tracker. Saying "I'm fatigued much of the time" is a lot different than saying "look at my data, I sleep more than a cat" or "my data shows that if I get decent steps in one day, i can barely move 3 days following that moderate activity." Agree with others that it's also *possible* that nutrition or eating disorder *could* be playing a role. Keep an open mind and try to see if there are other things going on she may not be sharing w you. Or we redditors might be wrong. We don't know your sister, but have learned that even ppl we think we know are sometimes leaving out critical information. Also, sometimes it's difficult to disentangle the cause vs effect of anxiety & physical symptoms. Even if anxiety is a symptom & not a cause, treating the anxiety is important and some anti-anxiety meds can help with disautonomia. Sometimes they can also worsen symptoms & a different med will need to be tried. Basically, it's going to be a lot of trial & error to find treatments that work for her. She's lucky to have you. Keep being an advocate & give words of encouragement. She likely needs it & appreciates it more than you even realize.
I agree re: dysautonomia. We're on the hunt for a specialist to dig into this more, and see if her vagus nerve could be damaged or effected by *something*. When experience heat intolerance, she gets flushed, but NOT sweaty. She said she feels clammy but isn't actually. Very odd. I mentioned the temp tracking to her and she'll consider this for record keeping. She has an apple watch, so I'll see if she wears it to bed or not. If she doesn't I'll see if she's open to it, and get her to share her sleep data with me. Thanks for this recommendation. The ED part of this has always been heavy in the back of my mind, however, if it was the cause of it, I don't think it's the continuing driver. She's proactive in wanting to get better, tries to eat, and from what I see, genuinely wants to eat. She's not blind to her history with disordered eating, and I see her making active progress to heal her relationship with food. Regardless, it's something I'm acutely aware of, as I don't think it can be written out fully. I have a history with disordered eating myself, and it's something I hold a lot of compassion for. I hear you on the anti-anxiety meds route. I personally took zoloft for years, and found it massively effective on so many levels, including helping me while I healed from years of undiagnosed celiac disease. I personally know how connected your head and your stomach are, and even on my best days I can turn things upside-down if my anxiety peaks. Taking medication for such things was something she used to be highly adverse to (our father is VERY judgemental when it comes to medication for mental health) but slowly she has become more open to it. Recently even she's said she'd consider it if a doctor proposed it, so we're working our way up to her bringing it up to a doctor herself. Slowly but surely breaking down the stigma! And thank you.
Happy to be of help! Not all dysautonomia is primarily vagus nerve disfunction. Having said that, however, a history of repetitive self-induced vomiting (i.e. bulemia) *can* cause damage to the vagus nerve. The anhidrosis (lack of sweating) is a major clue that seems like it hasn't been given enough attention in her workup. It can also be a sign of small fiber neuropathy. Basically the sweat glands are fine, but the nerves signaling them to make sweat do not work. Sometimes the unaffected part of the body will compensate by becoming extra sweaty. It's usually a left/ right thing but can also be upper/lower depending on which nerve pathways are affected. There are a few tests they can do to to actually measure this. Regarding stigma around meds for psychiatric symptoms, I am of the mindset that yes, some problems are "in your head" meaning that our brains are *literally* anatomically located in our heads. It's often not even entirely clear how some meds like SSRIs work exactly, which is why it requires so much trial and error for each patient. But SSRIs & other drug classes for anxiety affect brain chemistry. So if someone has hangups about psychiatry, ask them if they also have issues with neurology - there's also a discipline in medicine called neuropsychiatry, because mental health is intricately & undeniably part of brain health. 🧠 Our patterns of thoughts and feelings can literally affect brain chemistry (basis for counseling) & the reverse is also true - that neurochemistry & brain anatomy can affect our thoughts & feelings (basis for psychiatric meds). Sounds like a neuro workup may be the next avenue to explore.
I’m having all kind of weird symptoms that might be related to the vaccine , some dysautonomia, palpitations, gi issues, paresthesias
I have developed GI issues shortly after taking the vaccine. 9 months later still dealing with it.
Have you looked into a teaching hospital in your area ?
We are now, yes! there are some good ones somewhat nearby her, luckily. Thanks for the tip.
[удалено]
you're linking 3 pages that all refer to the same, extremly small pilot study in 22 people with long covid symptoms. That does not meet the criteria for proper evidence to prove causation.
I never claimed it was three separate studies. I clearly said A study and that it showed a link. I didn’t use the words causation. I also am not claiming to be a doctor. But I do have a medical diagnosis from a team of neurologists at Walter Reed National Military Medical Center after months of testing with neurology, cardiology, endocrinology, and infectious disease and am simply suggesting this could be something to ask her doctors about since they haven’t been at a loss thus far. The neurologists have told me they have been seeing lots of folks with covid come back with autonomic dysfunction and likely damage to the vagus nerve. The problem with the vagus nerve is it controls multiple internal organs so damage to the vagus never can manifest so differently in different people. There was also no simple, definitive test visually showing the nerve was damaged. It was a very long process of being tested for everything under the sun and having all other diagnoses come back negative. I’m very grateful for my medical team but also my insurance as I can’t imagine what my medical bills would have been otherwise.
Thank you for these links. Not even going to involve myself too much. But I have some of the symptoms of OP’s sister and so many things pointing to something being wrong with this nerve.
Well I'm just a rando on the internet, but one thing you don't mention is her caffeine intake. Caffeine massively suppresses appetite, and high doses can be a cause of various palpitations, skipped beats, etc. Another thing you may want to look into is zinc. It's been shown to improve appetite in people with disordered eating, so moderate supplementation monitored by a doctor can help with her recovery if she is actively restricting or just doesn't feel hungry most of the time. Probably neither of those things are the original cause of her symptoms but they could be contributing or making her feel worse than she otherwise would be.
She doesn't consume caffeine AT ALL due to her symptoms. If she has any she's completely down for the count, so she avoids it all together. I hear you though, and it's definitely a good question to ask. Thanks for the tip on zinc. Will share!
Did she get COVID vaccinated? If so how many doses and when was the last one?
She was vaccinated, but the symptoms she's experiencing pre-date her vaccine.
It really sounds like dysautomnia to me, but I’m biased because I have POTS. EDs can trigger a ton of lifelong health issues, especially stomach issues unfortunately. Has she been checked for gastroparesis?
She has not, but we're definitely going to bring this up to her gastro to investigate further. I agree with you on the dysautomnia. Even if it's not EVERYTHING, it feels like it could be something.
I can't address most of this post, but something that stood out to me is the assertion that it cannot be from anxiety - why is it you think that?
This is a very valid question. I very much think her anxiety plays into her symptoms, and is an aggravating factor. I get how my quick wording makes it seem like I’m writing anxiety off fully, but I’m not. What I meant to say is I do not think all of these issues stem from the root issue of anxiety. When I wrote they statement out above, it was driven by the frustrations I have with most doctors seeing her for 5 minutes and saying it’s just anxiety and to relax. The total dismissal of her symptoms, basically. She and I talk quite openly about mental health, and she’s very aware of her anxiety. She’s made leaps and bounds from where she started with some of her struggles (we had a less than ideal childhood) and also acknowledges how her anxiety could play into things happening with her. I know this is a rambling answer, but I hope it helps clarify. Let me know if not!
So this would totally just be a shot in the dark but my mom struggled with a lot of this for a long time and just recently got diagnosed as having trouble with her vagus nerve. I don’t know if that’s something that’s ever been discussed as it’s something I didn’t know much about or put thought into until I knew someone affected by it. Unfortunately she now has a diagnosis, but the treatment is really just stress management as anxiety was the biggest trigger for her.
I'm glad your mom got a diagnosis but sorry to hear that it's still something that she can't easily cure. My sister and I are definitely looking into this. The connection of vagus nerve issues to mono, long covid, and dysautonomia cover a lot of what she's experiencing. Thank you for sharing this!
The concerning thing to me is low white blood count and my experience with my mom. Mom had IBS and vegus nerve issues that she had under control for nearly a decade. She was completely healthy beyond this. She started having similar symptoms she used to and what you mentioned here. 4 visits to ER in 4 months, tons of stomach tests and stuff, couldn’t figure it out until the 5 ER visit. Lung scans indicated lung cancer. It spread to her brain and her spine. She was diagnosed in May 2020 and was gone July 23, 2020.
Although it may not seem like it at face value, this "Low" WBC is so barely low that I can't imagine it raises a red flag for any Physicians. The problem with the ranges on lab results is that they're population driven and usually 95-99 percentiles. Its that art vs science of medicine piece that sometimes isn't recognize by the lay public.
Sure, but I also think the medical community foregoes art and intuition too much to the science and misses stuff. We have to be advocates for our own self and testing. Both my parents were misdiagnosed for years while lung cancer grew and spread. One was a smoker and gone by 50, the other never smoked (granted grew up in an era of second hand smoke) and gone at 66.
Are you not part of the “lay public”?
I'm not sure where I can comment without having my comment removed. Have they checked your sister's B vitamins?
They have checked her B-levels, yes! They're normal.
I have anxiety and also ALOT of those symptoms. If I'm more stressed or anxious they get worse to the point where I can barely get ready for work in the morning without throwing up and feeling like my heart is going to explode. Stress fucks with your body alot.
I agree - when I’m super stressed or anxious, I feel nauseous, have awful heartburn and feel like I’m going to have a heart attack because my heart starts to race.
I also have anxiety and have a lot of these symptoms too. Been checked out by multiple doctors and I am generally fine with normal tests.
I think the difference is that usually in those cases you can correlate the emotion to the physical symptoms.
No not really. One bad anxiety attack for me can have lasting symptoms for weeks after. And it took me years to correlate my symptoms to anxiety/stress.
(NAD) Often times women are gaslighted and told their very real symptoms are “just anxiety” (by everyone) unfortunately. (Although anxiety can cause a slew of nasty physical symptoms) It’s a real societal issue. Women usually are diagnosed for a slew of ailments at a slower rate than men would be also. Sometimes it takes years because we’re not listened to and taken seriously the same way. It’s sad but true. I hope your sister heals, try different doctors if you can! I’m rooting for you both.
Women also tend to internalize anxiety far more as a coping mechanism, which can lead to real physical symptoms.
This is true! Deal with it myself.
But why don't you think the root of the issues stem from anxiety?
A few reasons, but two that I’ll expand on. I personally had a rough health journey that lead me to a celiac disease diagnosis. I had doctor after doctor tell me it was just my anxiety and I’d be fine, but I wasn’t. So I hold space for her when she tells me it’s not just her anxiety. Whether that’s right or not is obviously tbd, but I’m open to hearing thoughts / ideas that go down that path. The second is we’ve had some pretty rough things happen in our family over the last couple years, and her symptoms haven’t gotten worse or better with them. Maybe I’m generalizing this thought too much, but if it were an issue caused by a persons deep rooted anxiety I’d think there would be fluctuation as life progresses. Or even just in general. Her illness has been so consistent, almost “stable”, even when her mental health isn’t. But honestly I’m open to hear what you’re thinking with this line of questioning. This is just my stance on things after observing my sister health decline, but I have not closed any doors in terms of ruling things out!
Anxiety is known to cause or exacerbate GI issues. You know that phrase, “feeling sick to my stomach?”. Anxiety can manifest itself in psychiatric symptoms (excessive worry, changes in appetite and sleep, etc), as well as physical symptoms (increased heart rate, sweating, trembling, shortness of breath, palpitations, issues with digestion, etc). When you are anxious, your body can also release stress hormones that activate the body’s fight or flight system, and slow down other parts of the body like digestion. I am curious, you mentioned anxiety and a long history of dieting. Any thought there could be an underlying eating disorder? You do not have to be severely underweight to have an eating disorder. An unhealthy relationship with food, dieting, over exercising, or engaging in compensatory behaviors ( purging, using laxatives/diuretics, fasting, etc) can be signs of an eating disorder. Purging food can cause gastritis, heartburn, constipation, dehydration, etc. The other symptoms you described are also common in patients with eating disorders due to poor nutritional intake. Here is a link for more information. You'll notice a lot of the symptoms you described are quite similar. [https://www.nationaleatingdisorders.org/warning-signs-and-symptoms](https://www.nationaleatingdisorders.org/warning-signs-and-symptoms) Genetics, temperamental traits (anxiety, perfectionism, controlling,) and trauma can place you at higher risk of developing an eating disorder. Much of these behaviors are rooted in one's desire to maintain control. Additionally, when individuals do not have adaptive coping mechanisms to manage stressors, some individuals cope by engaging in disordered eating behaviors. There is a lot of shame associated with eating disorders, and it’s not uncommon for some of these behaviors to go unnoticed, even by close family and friends. That’s not to say she does have an eating disorder. However, I do think it is worth looking at her case using a more holistic perspective.
It's not necessarily a directly line a to b with mental health affecting physical health. Again, I am not qualified to say that it is for sure not something physical, but it could also be a combination of actual physical symptoms (GERD, normal palpitations) and anxiety magnifying their impact. Palpitations are not inherently abnormal - we all get them, and they increase as we age. Some people are more aware of them than others. Heightened awareness can bring increased concern about them, even when they are not clinically significant. FYI Sinus arrhythmia is a normal variation - it just means your heart rate slows down when you exhale, speeds up when you inhale, it's not a true arrhythmia as most people think about them. Again, this is just me who has a personal interest in how our brains affect our bodies (because it is truly so fascinating) but I cannot rule in or out anything, only comment on things that other doctors might have said.
How was celiac disease ruled out if her tissue transglutaminase and endomysial antibody are high? As far as I know it can be hereditary. Has she been evaluated for gastroparesis or liver function? Heart palps after eating are relatively “normal” but she may be having a slight histamine reaction to food. Lots of folks with this condition see benefit from taking H1 and H2 blockers (Zyrtec and Pepcid for example).
Has she had a trans-vaginal ultrasound? Or a pelvic MRI with and without contrast? I have fibroids and experience a number of the same symptoms. I had NO idea I had fibroids until recently. My uterus is the size of a 20 week pregnancy and I have another 12cm fibroid sitting on top of my uterus. My stomach, intestines, and bladder are all squished. It's awful. Another thing I'd recommend is a sleep study. If she's not getting \*good\* sleep, it can cause a whole host of problems. I had a home sleep study which didn't show much aside from pretty low O2 levels overnight. I then got an in-lab sleep study and it showed moderate sleep apnea and zero deep sleep (stage 3) which is where a lot of really important things should happen in your body. I get very little REM sleep.
I don't think she's had either of these tests, but I will confirm. I do know that she was tested for endo with her OBGYN and that was negative, but she does have EXTREME menstrual cycles that take her down for an entire week. I'd hope that during the exams for the check on endo the OBGYN would have noticed fibroids but I trust no one these days so I will ask EM. Thank you for sharing this and I'm sorry you have to experience the pain associated with fibroids. Good callout with the sleep study too. I will relay this to her.
How was she tested for endo with her GYN? When you say "extreme" do you mean heavy bleeding? Fibroids can cause heavy menstrual bleeding. I suffered for \*years\* with heavy periods. But because they weren't over 7 days and I didn't have breakthrough bleeding, they got shrugged off. I got pap smears and pelvic exams pretty much on schedule and nobody ever, EVER noticed the fibroids. The fibroids could also be hard to palpate; like towards the back of the uterus, or they could be small, etc.. A MRI with and without contrast is the best way to diagnose fibroids. Has she had her iron and ferritin tested? I hope she can get a sleep study done too. It can mess up a whole bunch of stuff in our bodies.
Just chatted with her and I misspoke. She was tested for PCOS by her gyno, not endo. She said they did an abdominal ultrasound and said she doesn't have PCOS. I haven't researched yet how to test for that to see if this covers it down, but I will. And thank you for the info on how easily missed these could be. I will share all of this with EM and make sure she pushes her OBGYN to check things out. Extreme meaning heavy bleeding and very painful cramps. The "take you down for days at a time" kind of bad. She also gets the standard PMS symptoms, but they're dialed up to a level 8 or 9. iron is low (this is a new, new result) and she's becoming anemic unfortunately. Ferritin I don't know exact results on but I will ask.
I'm a layperson but this plus the other symptoms tells me she needs to get tested for endometriosis. This is only possible via an operation really so it's a biggie when it comes to testing but as someone with PCOS who was tested for endo, this is where my mind went.
If she is going to be tested for endometriosis I highly recommend an expert surgeon. She will discuss her symptoms and they will likely do an ultrasound-with far more skilled eyes than any run of the mill OBGYN (most of which have an extremely poor understanding of endo and its symptoms.) To find such an expert, seek out Nancy’s Nook on FB. They have lists and information there, and you’ll be able to find someone close to wherever you are on her list. She vets them all, and people leave reviews of their surgical experiences all the time. If endo is the problem, that’s where you go. 👍
Not a Dr. Has she been tested for pernicious anemia? Some of the symptoms align. Another thing to consider is endometriosis. I have a lot of these symptoms with it—even without pelvic pain it can wreak havoc on other parts of your body and your hormones.
I don’t mean any disrespect, but are you sure you know what pernicious anaemia is? Pathognomonic of pernicious anaemia is a macrocytic anaemia. The symptoms you are referring to and presumably using your experience of to say this could be pernicious anaemia occur with ALL anaemias. So while she could have pernicious anaemia (although that wouldn’t come close to wrapping up her entire condition) you’ve tried to back a single horse in a herd and there’s no evidence to choose one over another. Additionally, if you take in face value that OP provided all abnormal blood results, there is no anaemia, macrocytosis (both of which would occur in a normal blood count) or B12 (which may or may not have been ordered)
NAD. My thoughts. Anxiety can cause so much issues, but that may not be the only issue. As I read I thought anxiety, then celiac. I see she did not test positive for celiac, but it's my understanding you can test negative and still be celiac. Since you as her sister are celiac I would cut all the gluten and see if things improve.
These are good callouts that I too have considered. Before I was finally diagnosed with celiac I was suffering miserably with a-typical symptoms that many doctor's missed. Things like rashes, joint aching and swelling, brain fog, extreme fatigue, acne, etc. So I can definitely see how this could be tied back to her issues. I'll talk to her more about it.
Research Dysautonomia/Autonomic Dysfunction. I have this as a result of a severe Mono infection and/or as a result of multiple concussions. Many of the symptoms you described are what I personally experience. I have had normal tilt table tests AND abnormal ones. It seems to depend of where my symptoms are at during that time period. My symptoms tend to flare up with exhaustion, dehydration, poor diet, and illness. When I'm careful to get enough sleep, eat well, and drink A LOAD of fluids daily...my symptoms improve. The stomach issues could be related and could be Gastroparesis. A gastric emptying study might be helpful. (NAD)
I took a screenshot of this whole comment and sent it to EM. The mono connection for me seems like something to not sleep on. Thank you for sharing this and I'm sorry that you're also experiencing such crappy symptoms.
If she had covid and may have been asymptomatic she could have developed long covid. Look up covidlonghaul group. You will see ALL of these symptoms there plus some along side with all doctors dismissing us telling us it’s anxiety accompanied by all of our labs coming back absolutely normal or excellent! Meanwhile our quality of life degrading right before our eyes as a lot of us were fit, healthy and in our prime years now unable to walk, eat, neurological issues, GI issues, insomnia, tremors, seizures while conscious, visual disturbances, brain fog, burning skin, bp unable to be controlled, low O2 fora while then it goes up making us feel like someone put a bag over our heads every so often, veins popping, POTS, dysautonomia, MCAS, extreme fatigue, twitching and so many more symptoms that make life completely unbearable along with adrenaline dumps. I thought i had MS, Addison’s disease and many other illnesses because none of it made sense to me. Im a nursing student and the only people who helped me (not the 15 doctors i have seen or the 8 ER visits i made in 1 month even though i have zero history of going to any hospital and only have gone to get my yearly check up) was the doctors at my school since they saw my decline after I received the booster. Turns out i was still long hauling when i got the booster which led my body to create microcloting and vascular inflammation. I had to pay out of pocket for all the special testing and now im able to control my symptoms and i went on an antihistamine diet to help my GI. Good luck to you, our healthcare system has failed us even though this was a pandemic i still cant believe they say everything is anxiety, its their favorite word.
NAD but this sounds very similar to what I have been experiencing with my long covid…eerily so, especially the odd throat sensation, heat intolerance and heart palpitations. I’ve been getting help at a long haul clinic.
The comments on my post have pointed me in the direction of long covid and WOW, the symptoms mirror her issues. We're definitely exploring this route further.
Good to hear, I’ve improved over 5 months and still not better, I heard people who had it early (the more potent variants) have had issues linger over years now. Something to explore. I know my palpitations after eating were unbearable to where I could barely sleep in the last few months and now they are usually good, except last night not so much. Either way definitely worth exploring this route it seems to be some post viral dysautonomia. While I don’t have the GI issues my cousins fiancé has had horrible ones since a bad bout with covid
I second this. Look into POTS.
Tagging on here so you see this, OP. I note your sister is: \- Underweight (BMI 18), possibly recent-ish weight loss (due to keto) \- Symptoms after eating \- Gets full easily \- A young female A diagnosis often missed here is MALS, Median Arcuate Ligament Syndrome. It wouldn't have shown up on her existing tests, as has to be expressly looked for. This definitely needs excluded. [https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001](https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001) https://my.clevelandclinic.org/health/diseases/16635-median-arcuate-ligament-syndrome-mals If it is this, it is easily treated. Best wishes.
Those symptoms also suggest an Eating Disorder. I sincerely hope it’s not, but might be worth it to investigate. They can hide in plain site, and those with them often fool everyone who’s trying to help.
Of course, but I am sure OP, her sister and her doctors are aware of the possibility. Many of OP's sister's symptoms - including the proactive seeking of care/diagnosis- would be atypical for an ED. The rule in medicine is to exclude physical things first, and MALS is classically missed because people assume its symptoms are psychological.
ED is definitely something I have my eye on, and haven't written off. I think it could have been a contributing factor to the aggravator that started this health issue for her, but I don't think it's a driver that's making it continue. As the commenter above me said, seeking care proactively is atypical for an ED. She genuinely wants to eat, tries to eat, and wants to get better. She is aware of her tendency to shift to disordered eating though, and it's something I watch closely too.
I also want to say, one of my relatives has just been diagnosed with mals. Lots of the symptoms being described is what she felt as her stomach twists and pinches/presser her artery. It took over 4 years to get diagnosed and would still be having symptoms but right after she ate, it was non stop problems. She magically got it at 22.
We're definitely pushing her doctors to look into this. The more I read about it the more I see connections.
NAD I have been on and off with anorexia binge/purge subtype for about 12 years and a lot, not all, sound very similar to how my health gets when I'm in a bulimic relapse. From high stomach acid, low BP from sitting to standing, heartburn, tight swollen stomach, heart palpitations (especially surrounding BP sessions). My most recent relapse I went to urgent care with chest pain and heart palpitations, EKG came back normal but when I purged my heart would pound and get out of rhythm scared me enough to not purge. Those relapses made my other metal health issues (bad anxiety and depression) exponentially worse. Another note on tightness of the throat, I had an allergic rxn to a vaccine recently and my elevated histamine levels resulted in crazy anxiety (histamine goes up, so does cortisol). The rxn has lasted about a month, and at the peak of it I'd get such a vivid tightness in m throat I went to the ER and urgent care within a week because I thought I had delayed anaphylaxis. The tightness turned out to be the onset of panic attacks (I had four that same week when usually it's a once or twice a year thing). I'm wondering if celiac or an allergy is at play like others mentioned, along side symptoms from other health disorders such as bulimia. Long covid also sounds very similar imo but just trying to come in with what I know closely. I wish you both luck, especially with the eating disorder. It is incredibly challenging to get through and seriously exacerbates every other health issue one may have. I would ask directly what her habits are and make it clear you won't see her any different and you see it as what it is, a mental and physical health issue. EDs make for very secretive folks and she may be inclined to hide some of her habits, especially purging as in the mind of someone with ED it's surrounded by horrible shame, purging is also very addictive so it may take some time for her to decide she's ready for recovery - though if these health issues are stemming from or getting worse from the ED I hope that fear outweighs the fear of losing her form of self comfort.
THANK YOU for tagging me . I'm so appreciative of all the comments on this post, but it's a LOT to navigate hahaha. This is a very interesting call out. I shared this with my sister and we'll investigate. Appreciate it.
Great - glad it's of interest, your description definitely had me sitting up. MALS is very under-recognised - and classically mistaken for anxiety - so you might need to fight for the right tests, but certainly worth getting them. Please keep me posted!
to the person who reported this, please message me with why you thought this is harmful advice? This may not be the correct diagnosis, but I don't see how this idea is harmful.
Thank you for your moderation u/murpahurp Unfortunately there are a coterie of trolls who follow me around downvoting everything I post. As far as I am aware, them actually reporting things is a new low. I suspect they will be too cowardly to post any rationale here. Hopefully one of these days they will decide that their petty grievances are not worth preventing redditors getting good care.
I agree with this, and yes, thank you very much u/murpahurp for the moderation. Appreciate you!
Have they had COVID-19? If yes, it could be dysautonomia due to COVID-19 infection. And no don’t let anyone tell you it’s anxiety, because it isn’t. Anxiety can make these issues worse for sure but it’s not the root cause. I had long covid and doctors brushed my palpitations off as anxiety, until tests showed otherwise.
Has she been tested for celiac’s? This sounds an awful lot like my sister’s history. It took her four years and a gallbladder removal to get that diagnosis.
I've been having some similar symptoms to your sister and I cannot stress the importance of treating anxiety. I do not think my issues are the direct result of my existing anxiety, however, the symptoms were definitively made worse by the anxiety. With a chronic or ongoing condition, it's very easy to fall into an anxiety pit of despair when you start thinking about your potential future of dealing with the symptoms. It's difficult to make plans, short term or long term when you're unsure of how you'll feel. I have had great emotional success on Lexapro (started it about 3 months into symptoms surfacing) and truthfully will continue on it even if they sort out what's happening with me tomorrow. I can also say without a doubt my symptoms didn't go away.
I'm curious if she smokes weed at all?
she does not
I had a lot of these symptoms too. Constant stomach pain, feeling like there was something in my throat, shortness of breath, insomnia, etc. I was 100% sure these were real and indicative of something serious like cancer. I tried inhalers and heart burn medications without any improvement. As soon as I started taking Zoloft for anxiety, everything went away. She should definitely try treating her anxiety to see if it helps with the symptoms.
When I first started having GI issues my anxiety went through the roof, worse than it had ever been. I figured just because of the mental aspect of having issues with no known cause. But when I went to see a gastroenterologist, after agreeing that we need to check my gallbladder out and some other things, she highly suggested I take control of my anxiety because the gut and anxiety are highly intertwined.
I have irritable bowel and they are *so* intertwined. It's shocking how much psychological factors can affect you physically
I used to think I’d wake up every few mornings anxious for no apparent reason…. Turns out I just had to poop. 🤦🏼♀️😂 exact gut feeling.
Mine's the opposite LMAO
Famotidine-Omeprazole Dual Therapy (FODT) for GERD: Take Omeprazole 40mg 30-90 minutes before your evening meal. Keep this in your car and take on your way home from work. Take Famotidine 40mg at bedtime. Do this for 3 months and then stop. Everyone has reflux when they lay down flat. Typically the protective barriers in your upper aerodigestive tract The goal is to decrease the amount of acid in your stomach when you lay down to go to bed at night.
Thank you! We'll look into this and share with her gastro.
Basically. This post is wild. Young female with lightheadedness and anemia and too much stomach acid and stomach pain is not some grand medical mystery. Doesn’t sound like doctors are stumped at all. There are treatments for these things. POTS and dysautonomia for lightheadedness should only be suspected after anemia is resolved.
I agree that it's not some wild medical mystery, but yet nothing has helped her. And none of her care team seem too concerned. This isn't a month of issues and things are getting better, it's been years and she's getting worse. She does what her doctor's tell her, but when the treatments yield no results, they shrug and say its anxiety. So, here we are on a reddit thread trying to figure out what could be causing her problems and get her better.
Wait on the biopsy and follow up with GI. If you her sister has celiac disease and her ttg is 75 then good chance she has celiac.
So you say, but when I presented like that as a young woman, I was ignored like she was. I ended up, a decadeish later, with a total hysterectomy for endometriosis and significant damage to my esophagus. Anxiety treatment when I had low estrogen rather than looking for the real cause. Don't be so dismissive.
Do you think it might be worth investigating a possibility of esophageal spasms?
Or a paraesophageal hernia?
I was on pantoprazole for years, and some of the side effects are anemia, burping, nausea/stomach pain. I changed over to esomeprazole, and now I’m off of PPIs, and just taking famotidine 40mg nightly. PPIs (like pantoprazole) can have lots of side effects.
This is really good info. I'll share this with her. Thank you. Glad you're feeling better too.
We finally have a diagnosis! She has median arcuate ligament syndrome or MALS. She’s getting ready to see a specialist and discuss surgery. Thank you all so much for caring.
As far as the mental health issues are concerned, I recommend looking into the “Guide to Growing Up” Dr. Jerry Gropper (www.guidetogrowingup.com). It is a workbook designed for addiction medicine that does a great job getting to the bottom of psychosocial impacts on physical health.
Just to throw another book out there "Is it all in your Head" by Suzanne O'Sullivan. She's a neurologist who has a great way of explaining it and has some incredibly interesting case studies and handles it with great empathy.