I apologize if this may have formatting that goes against the norm of Reddit. I’ll use it to look up questions/read testimonials, but I’ve never been one to browse or post. I’m also writing this rather late for me, so bear with any run on sentences or grammatical errors. I know for sure I shifted tenses at some point, but I just want to get all this out there.
I’ll explain my health history and symptoms in depth, but if you want an overview of my symptoms I’ll provide one at the start. I’m not really sure how wordy these tend to be, so again, I apologize if that’s not preferred. I have experienced so much over these past few years, so there may be something I forgot to mention. Feel free to ask any questions. I’m not ever convinced that either my doctors or I have finally figured out what’s going on, so if this doesn’t sound SIBO related, PLEASE let me know. I want to enjoy life comfortably and actually have the energy to feel good and exist as a person.
Symptoms Overview: Facial flushing 20 minutes to 1 hour after eating, brain fog and a sensation that feels like my head is underwater, in worse flare ups a buzzed like sensation, fatigue that can be feverish, chronic constipation that has been unresponsive to diet since 2019 or so, cold intolerance that worsens after eating or drinking (I’ll sometimes need a winter coat in the summer), physical anxiety like being able to feel my heart without mental anxiety, bloating, distended stomach after meals, reactive hypoglycemia, something akin to rumination syndrome, malabsorption, diarrhea or an immediate bowel movement after eating depending on what was consumed and if I’m not constipated, worsened constipation after consuming fiber, burping but it’s more like small bubbles of gas that come up while eating or soon after eating, fullness/pain in the upper right abdomen after eating, an inability to recognize fullness or hunger, abrupt sensitivity to histamines (things like a sore throat or post nasal drip got better after starting medication), intolerances to gluten and dairy although the dairy reactions come and go, and a dryness or burning in my eyes after I eat.
Some of these have been ongoing issues since 2019 or so, while some are newer. They’re all triggered by the consumption of food and happen within a 20 to 3 hour time frame. I don’t always know how long it lasts. It feels as if my body adapts once I find something that works for me diet wise. I’ve always eaten well balanced diets, and I’ve never been one to like “unhealthy” foods. I do consume a lot of fiber and drink plenty of water. I did try eating small, frequent meals when diagnosed with hypoglycemia however, that made my days harder since food is a catalyst for a reaction. Triggering a reaction can consume the entire day and takes whatever energy and life I had. The reactions didn’t seem to follow a pattern. Recommended diets for my current diagnoses didn’t help, or only helped for so long. It does seem to fit in line with foods that would irritate SIBO. Currently, I am trying a low fermentation diet alongside eating 3 meals spaced out. It has helped me have a bowel movement, to my surprise.
Current diagnoses: POTS, Atrial Septal Defect, Reactive Hypoglycemia, Narcolepsy (type 2), Fibromyalgia, Cervical Dystonia, and Severe TMJ. I also regularly have low iron and vitamin D. There are a few unnamed issues like chronic constipation, stomach distention, regurgitation (this one is weird, but I’ll get into it later), and intolerances towards gluten, histamines, and dairy.
Possible Important Info: I did have a CT scan of my stomach a while back, and there was concern over possible fatty liver. I was told it's not a concern since I don’t drink, I try to stay active, and I eat healthy. I also live in a house with mold. I know that’s horrible, but it’s not by choice. I try to spend most of my time out of my home.
Starting around 2016, I had become rather weak and prone to illnesses. I stopped being able to be as active as I used to be and had to quit extracurriculars that I loved. I did end up having mononucleosis that year, and my cardiologist believes that might have been the catalyst for my POTS diagnosis. That diagnosis didn’t happen until 2019 or 2020 (I don’t recall the exact date) after I had covid.
I don’t remember too much of this time, but it was incredibly difficult for me. It ended up preventing me from going to college (which I had graduated early for) and working. Most of my days were spent in bed, and I did not even have the energy to do things I enjoy. I’m fairly stubborn and have a tendency to push myself, so I was probably making myself worse by trying to function like a normal person. I did not think I would ever be healthy enough to work. Over time, we found somewhat of a good combination of medications, and I wasn’t as miserable.
Unfortunately, the severity of my health comes and goes. It feels like every 6 months or so some kind of debilitating symptom pops up, and any progress I make (consistently working out, having a part-time job, etc.) gets reset back to zero. It’s like my body is actively working against me, and I cannot stress how much I do not wish to be sick. I don’t get anxious about potentially having something and then make myself sick from it. I do like trying to problem solve so I will look into things, but it’s more so to satisfy a curiosity in the torturous appointment limbo.
Since the start of my POTS diagnosis to the current date, I’ve been diagnosed with several other illnesses (the ones listed up top) as well as experienced episodes of issues that went seemingly nowhere. Some of which come and go. I don’t recall if this happened before or after my POTS diagnosis, but I started having gastrointestinal issues. I would become severely constipated, and my stomach would distend to the point of looking pregnant. I’m fairly skinny at 5’7”, so it was a rather drastic look. I was treated by a GI specialist however, we never found out the cause. The GI and my mother decided to try cutting out gluten, and for a long while it seemed to help. This is where I got my first ever intolerance label.
Starting in 2023, my food related reactions started to get worse. I did have to cut dairy on occasion (starting around when I cut out gluten), which was always strange to me that it was something that would come and go. I did have a colonoscopy in 2019 or 2020, and there was nothing to indicate lactose intolerance. I randomly had what looked like an “allergic reaction” to some kind of flavored popcorn. Still not exactly sure what happened there, but my tongue started swelling/throbbing, and I found it hard to swallow. I went to go tell my mom, and the next thing I knew, I was waking up on the floor because I had passed out. She said my pulse and blood pressure were dangerously low and that when she saw me, I looked blue. I could not keep myself awake, but I was terrified every time my consciousness faded. It just felt wrong. In the moments I was able to speak, I pleaded with her not to take me to the ER because the thought of her having to spend 1k or more on medical bills scared me even more. She gave me Benadryl, and the next morning sucked, but the immediate reaction stopped. I had SEVERE abdominal gas, though. Nothing is comparable. I did some self-experimentation to figure out that it was dairy that caused that reaction. I genuinely have no clue why it happened or why it stopped happening. I’ve had dairy in the current time, and the worst I feel is inflammation, so I just avoid eating it.
Not too long after this, I started regurgitating food. I have no better way of putting this. It could be 20 minutes or even 2 hours after I ate. It would not come up like vomit or with any kind of bile. Sometimes there’d be mucus, but it wasn’t all the time. Certain foods seemed to trigger it more often, but they didn’t follow an exact pattern. I did see a new GI doctor for this in 2024 (I had aged out of my previous one). She treated it as GERD, but none of the treatment helped, and it didn’t exactly fit with the food triggers. I had a throat X-ray with contrast and was told that it looked like the fluid got stuck (I don’t recall at what point). When I went to speak to the techs, it passed. They both said they have never seen that happen. My GI doctor did as well. They all sort of had a “huh, that’s neat, I guess” reaction. Since we never came to a conclusion, she put me in physical therapy for diaphragmatic breathing and planned on treating it like rumination. We had a follow-up that was very weird, and I have not seen her since. I was basically asked if I was doing well, outside of the fact that I’m throwing up everything I eat. Acknowledging that if I were to remove the variable that’s causing me to visit, I am, in fact, good somehow meant to her that I no longer need treatment. I was extremely confused in the moment. This issue persisted until late 2025. I’m not sure what caused it to subside, but it did. It will happen on occasion now, depending on what I eat. There’s an uncomfortable fullness in my upper right abdomen that comes with it, and it feels like I can feel the food stuck in my throat.
In early 2025, I had asked my cardiologist if it was normal to get excessively tired after meals. I naively assumed it was. I would take naps or get feverish after eating. I was already struggling with sleeping far too much, but this was also during the time I was ignoring my narcolepsy diagnosis. I believe I had a sleep study done in 2021, and I was put on sunosi. My somnologist said she preferred a stimulant like adderall but was hesitant due to my cardiology issues. I hated how sunosi made me feel so much that I ignored it all. All that being said, my cardiologist ordered a 5 hour glucose test. This test ended up having to be stopped at the 3 hour mark because my blood sugar had dropped to 47mg/dL. I was referred to endocrinology, but the earliest they could see me was late 2025.
During the period of time between the glucose test and my endocrinology appointment, I had my first histamine flare ups (?). I would get severely flushed within 20 minutes to 1 hour after eating, and alongside it, get brain fog. The brain fog made me feel like my head was underwater or almost like I’m drunk. I wouldn’t say I got anxious mentally, but I would get the physical feeling. Most of which is feeling my heart fluttering. I get severely cold as well, but It’s not isolated to these kinds of reactions. My reactions to foods continued to devolve. More and more things triggered a reaction, including just water with lemon juice. I was so lost on how I was supposed to operate normally.
Late 2025 (prior to endo), I started having what I assume to be inflammation issues. I developed a chronic headache on the left side of the back of my head. It was sharp and never went away. The pain was so bad that I ended up going to the ER once, but that was an unrelated mess (compazine is an evil thing). My TMJ worsened during this time as well. My face was constantly swollen, and my entire body ached in a way I hadn’t experienced. I’d go to bed, and it would feel like everything was throbbing. It came with a pulsating tinnitus that had several tones to it that drove me insane. I ended up seeing neurology for this and was told I had cervical dystonia on my left side. I was given Botox, and it was awful. It’s like it aggravated everything even more. Physical therapy (didn’t happen until early to mid 2026) helped some, but what ended up helping more didn’t come until mid 2026.
None of this is something I wish to go back to. It felt like so many wasted months of suffering. When I finally saw endo, the recommendation was to eat cornstarch before meals, eat several small meals throughout the day, and follow a reactive hypoglycemia-friendly diet. None of this worked. I have always eaten healthy like my endo recommended. I did let her know that, but that’s really all she had to offer me. She did do blood work (A1C, TSH, and something for PCOS), but all of it came back normal except my cortisol, which was elevated. More accurate testing showed normal levels, so that didn’t go anywhere. The frequent meals honestly made me feel worse. If I could prolong having to eat, I would have at least some of the day not suck. The reactions usually last 4ish hours, and then I finally start feeling somewhat normal but not good.
Starting in early 2026, I was diagnosed with fibromyalgia when referred to a rheumatologist by my cardiologist. He had referred me for genetic testing for EDS due to me being incredibly hypermobile and that potentially causing joint pain and my headaches. The rheumatologist assessed my body and had me use the Beighton Scoring System for hypermobility. He listened to what I had been struggling with in relation to joint inflammation and body aches and essentially told me that It’s likely I have EDS, but testing for that would be pointless. He explained fibromyalgia and how he believes that I have it and what he recommends. Which was water aerobics and staying physically active. Which is what he would also recommend for someone with EDS and hypermobility. He was not a fan of giving his younger patients medications for these issues, which, after hearing what he usually prescribes, is not something I would want to be on either. Forgive the tonal change, but it was a nothingburger appointment.
That diagnosis did lead to my boss’ wife informing me about a fibromyalgia lifestyle clinic at the university she works for. This clinic helped me because they set me up with a nutritionist who told me about MCAS and histamine intolerances. With her help, I followed a low histamine diet, and for a moment I really thought it was going to help. My reactions to food lessened. They were still happening, just not as severely. Most of my diet was grilled salmon and oatmeal. Annoyingly, it was like my body adapted and went right back to how it was. The few things I thought were safe foods weren’t anymore. Not being able to find a pattern that connected the reactions drove me insane. I went back to my cardiologist with this information, and this is where he explained to me that POTS patients can have MCAS-like symptoms without elevated tryptase levels, but that MCAS is comorbid with POTS. This led to me seeing an allergist and being put on a double dose of an antihistamine, famotidine, and montelukast. I’m not sure why, but a little after a month or so, all of my severe body aches, joint pain, TMJ flare ups, and head pain calmed down. My reactions to foods got better, but I would not say they calmed down. They still persist and almost adapt. I was also put on a stimulant, and that helps combat some of the reactions. I feel like I can operate as a person for once, but eating is such a pain.
Currently, I still can’t predict what is going to cause a reaction or not. I did start following a low fermentation diet recently, and so far it has been positive. I’ve had consistent bowel movements for once. It’s not much, but it really beats not having one for a week. I did wear a CGM in early October because I have been waking up every hour and having sleep paralysis where I feel as If i’m suffocating but cannot move. My dad has sleep apnea, and I may get another sleep study done, but my mom said the same thing happened to her when her blood sugar was dropping in the middle of the night. It didn’t happen every night, but I did notice my blood sugar would drop below 70mg/dL. I also noticed my blood sugar would peak about 20-30 minutes after consuming carbohydrates or sugar. That being said, my blood sugar does not seem to be tied to the food reactions I’ve been having.
There are certain foods that trigger a bowel movement after consumption (if I’m not constipated). Oats would be the worst offender. I feel like when I’m not constipated, it’s almost like things pass through me too quickly or cause diarrhea. Alongside that, I noticed malabsorption. I feel a bit naive for not knowing that I was not supposed to see chunks of undigested food in my stool. There was also a time when I was finding undigested pills. Those pills were my salt tablets, which had a vegan casing. I have no evidence for this, but when I was taking slow FE for my iron levels, it never felt like it was helping. Most things cause me to become severely constipated, especially fiber (which I’m only just now figuring out). I do drink a LOT of water, so I don’t believe that’s the issue. I just got over a horrible bout of constipation that laxatives did not help for several days. I do deal with abdominal gas and distention after every meal still. I’ve also noticed that after I eat, there are bubbles of air or gas that come up. It’s not a burp, which is why I used the word bubble. I am curious if other people have dealt with something similar and have SIBO. Regardless, I think I have something wrong that I need to see a GI for. I did see that with SIBO, people typically lose weight. However, I feel like it’s the opposite for me. When a food triggers a reaction for me, it’s like my brain is telling me I need to eat more. I do feel a fullness due to gas, but it isn’t a satiated fullness. I have struggled with hunger cues since all of this started devolving. I think hearing that someone may think of a binge eating disorder or a bodily reaction to starvation mode, but I do regularly eat normal amounts even if I want to put off eating so I can feel better for most of the day. I know that’s not healthy, and I don’t want to actively make something worse.
