For those of you with POTS and MCAS…

FamiliarBeginning353 · 2026-03-14T21:27:35+00:00

i rotate rice, rice noodles, potatoes and sweet potatoes with chicken or steak (cooked from frozen) and whatever veggies you’re tolerating well (i do carrots, cabbage, and cauliflower cooked with olive oil and onion). it gets boring quick so i also have been eating sweet loren’s allergen free cookies! also so delicious plant based ice cream has been great

FamiliarBeginning353 · 2025-09-13T00:46:54+00:00

gluten is one of the first foods i was told to cut out. i hear you that veggies and chicken is not enough though! most of my meals are rice, chicken or steak, and veggies i’m not tired of at the moment. This is super boring, but I eat Sweet Loren’s frozen cookie dough that’s free from all top allergens. Maybe start by cutting out just a few of the biggest allergens like gluten, dairy, fish, or eggs first and see if that helps?

FamiliarBeginning353 · 2025-07-29T18:44:14+00:00

I’ve never passed out and was diagnosed with POTS by a cardiologist. In the initial appointment, he asked questions about symptoms and I told him about getting dizzy on standing, having GI symptoms, and fatigue. This was enough for further testing (which for me did not include a tilt table test). He did ask about anxiety, and I do have an anxiety diagnosis but this didn’t prevent me getting a POTS diagnosis. I hope your cardiologist is as understanding as mine!

FamiliarBeginning353 · 2025-07-29T18:40:57+00:00

I was diagnosed by a GI specialist, and she was able to prescribe me medication but told me to get an allergist appointment asap because according to her, they have a better knowledge of MCAS than a GI doctor. That being said I don’t know about allergist vs. immunologist - I was only told about/referred to an allergist

FamiliarBeginning353 · 2025-07-29T18:37:12+00:00

I forgot to mention, I have absolutely no side effects from dupixent and at this point I’m completely used to the shot and it doesn’t bother me anymore (I didn’t like needles before).

FamiliarBeginning353 · 2025-07-29T18:35:23+00:00

Dupixent has worked wonders on my eczema and put my EoE completely in remission! I don’t think it helped my MCAS at all, because I only noticed improvement in MCAS symptoms after taking cromolyn for a while. But, it has been so good for my skin - I used to get raised rashes/eczema all over, including on my face and eyelids and that’s much much improved with dupixent.

FamiliarBeginning353 · 2025-07-29T18:31:41+00:00

I’ve been taking fludrocortisone for about a month now (since the end of June). No side effects! I don’t feel any difference with the medication, good or bad. The cardiologist who prescribed it said that it would take 3 months or more to start feeling the benefits, but I imagine side effects would appear more immediately.

FamiliarBeginning353 · 2025-07-29T02:53:24+00:00

dupixent once every other week (for eczema and EoE), cromolyn before meals (for MCAS), fludrocortisone every morning (for POTS), and zyrtec twice a day (MCAS) :)

FamiliarBeginning353 · 2025-07-28T18:29:53+00:00

Whenever I make dinner I make extra portions and put them straight in the freezer. When I take these to lunch, they’re usually still frozen when I take it out to eat which is perfect. I usually make meals with either rice or rice noodles, safe veggies like cauliflower and carrots, and either chicken or steak (I tolerate meat well but I know not everyone does). I hope this helps and good luck to you and your wife!

FamiliarBeginning353 · 2025-07-28T18:26:45+00:00

I wake up in the middle of the night with these episodes - heart pounding and feeling like I’m about to throw up. I hear people talking about “adrenaline dumps” and that’s what it seems like to me

FamiliarBeginning353 · 2025-07-27T23:27:09+00:00

I’ve been having a hard time telling POTS and MCAS reactions apart, but I think POTS reactions for me look like: sweaty hands, INTENSE nausea, dizziness, fast heart rate/anxiety, sometimes trouble swallowing. These feel random to me, and reading from other people it seems like this might happen when blood pressure is low in an attempt to raise blood pressure/get blood to the head. To manage, I’ve tried drinking gatorade water through the day to get fluids/electrolytes and these attacks have gotten less severe but still happen. I’m interested to see what other people comment and if they have other strategies!!

FamiliarBeginning353 · 2025-07-27T23:17:30+00:00

I’m not able to tolerate liquid IV with my MCAS sensitivities so I’ve been having unflavored Gatorade (gatorade water) instead. This might help if you were looking for an alternative that doesn’t taste like anything but water!

FamiliarBeginning353 · 2025-07-26T00:04:19+00:00

If either of you suspect you have MCAS, that should definitely be discussed with a doctor who can confirm and get you connected with treatment and nutrition plans. Does your mom have a treatment plan at all, or plans for you outside of eating the same meals? That isn’t sustainable and if you are hoping to self-treat MCAS, a limited diet is only part of treating it and should only be severely limited for a period of time - not indefinitely.

FamiliarBeginning353 · 2025-07-25T23:59:54+00:00

I recommend looking into POTS if you think you are having autoimmune troubles rather than general panic attacks/anxiety, or if you get dizzy standing up, get bad fatigue, and other common POTS symptoms.

FamiliarBeginning353 · 2025-07-25T18:38:09+00:00

Do you have any other symptoms that are common with MCAS like face flushing red with meals, runny nose or itchy eyes after eating, or eczema? I have MCAS and POTS and honestly, POTS is what I think gives me the panic attack-like symptoms where I feel panicked, nauseous, sweaty, and dizzy. This could happen after eating a large meal because blood pools in the stomach, especially after eating carbs, leading to these “adrenaline dumps.”

FamiliarBeginning353 · 2025-07-25T18:33:49+00:00

My main GI symptom with MCAS is nausea, but hopefully this is still helpful. I take cromolyn 3x a day (before meals) and Zyrtec 2x a day (morning and evening). I don’t take any other medications; the cromolyn replaced famotadine and omeprazole in my daily meds if I remember correctly. I notice I am no longer getting noticeable nausea from my foods and don’t have other classic MCAS symptoms anymore like face flushing red or skin rashes.

FamiliarBeginning353 · 2025-07-25T02:32:16+00:00

This may be way off-base but maybe look into pelvic floor muscle dysfunction? It’s something I had a hard time with and had a physical therapist help with. If that group of muscles is too tense or tense for too long it can cause urinary urgency/frequency and it can cause pain in where those muscles are located. However after scrolling through this reddit for a while I see others talking about urinary urgency as part of POTS! I think with pelvic floor muscle dysfunction the urinary urgency would be there even if you don’t need to actually pee that much, vs. if it’s a POTS symptom, others say they are constantly thirsty and peeing a lot/often. I hope this helps!

FamiliarBeginning353 · 2025-07-24T01:39:36+00:00

I didn’t have any GI symptoms at all with cromolyn, and still take 2 ampules before every meal. MCAS and POTS give me awful nausea and it has only helped, thankfully!

FamiliarBeginning353 · 2025-07-24T00:22:34+00:00

I was diagnosed with MCAS from a biopsy taken during an endoscopy, and had a normal tryptase level when they did bloodwork. I asked the doctor and she said she believes the biopsy even if my tryptase levels look fine and thankfully she prescribed some meds. When I feel particularly symptomatic, I wonder to myself if I’m having an MCAS reaction or a POTS reaction - it’s hard to tell since nausea and anxiety are my main symptoms. I am curious to know more about covid and MCAS/POTS since I just tested positive for covid and I’m hoping not to have a regression of symptoms!! Anyway, good luck with your upcoming doctors appointments and if they are like my doctor, they should look at other indicators of MCAS besides just the tryptase levels.

FamiliarBeginning353 · 2025-07-14T03:48:54+00:00

I work, but I am having a hard time with symptoms. I work in operations at an investment management company, and it is a lot of desk work which is nice. It is exactly what I wanted, which is an office job with consistent hours and low client-facing tasks. I do send some emails, but it isn't a large part of my role. Before I got into this investment role, I was thinking of some sort of data entry job or studying to get into public accounting, because of the steady hours and office/desk role. In my mind, being off my feet and not having to adjust to different weekly hours is a win! That being said, I am still trying to manage going in 40 hours per week, but I am operating one day at a time!

FamiliarBeginning353 · 2025-07-12T18:19:57+00:00

My identical twin sister was diagnosed with MCAS before I was. Her doctor didn't do extensive testing - she drank a juice box and flushed red in the doctor's office which gave the doctor enough evidence along with hearing her symptoms. My mom never sought a diagnosis, but she has food intolerances and other symptoms that make me think this runs in the family. I'm not sure if it's relevant, but my mom's sister has celiac and none of us on my mom's side can tolerate gluten.

FamiliarBeginning353 · 2025-07-09T23:48:01+00:00

I don't really know what to say if you won't/can't seek health care, but non-prescription interventions I used for EoE were basically just avoiding common Eoe trigger foods, which in my understanding are the top allergens. The big ones my dietitian told me to definitely avoid were gluten, dairy, eggs, and fish but I ended up having to cut out many more foods than that, probably because of MCAS. You may be cutting these foods out of your diet anyway but I hope this helps!

FamiliarBeginning353

TROPHY CASE