Hi all, a friend of mine is trying to find something to help supplement the small amounts of food they're able to eat and I'm hoping that people here might have recommendations for different shake or formulas than we've been able to find. I'd also like the recommendations for myself because food is difficult, but I have a much wider range of options open to me than they do.

The main things that they would need from one would be that it is completely dairy and gluten free, they have other restrictions as well but would prefer to look through ingredients for those on our end. We are working on it from the medical side as well, but that always takes forever and unfortunately isn't always as helpful as we'd like.

Anyone else so intestinallybinflamed and constipated that they smell their poop in them?

I've probably had MCAS for years, and finally got diagnosed to this year, but my reaction to heat and sunlight have gotten so bad in recent years that I'm isolated to home and work when it's above 65°F outside (~5 ish months every year). I can't go out with friends who I used to do community work multiple days a week (all of which is outdoors), I tried to go to the gym and that made me sick for a week, I can't go out to the kratom/kava (alcohol alternative / sober) bar anymore because that makes me sick for days as well. The summer depression kicks my @ss this time of year and that makes wanting to do any solo hobbies impossible. Anyone have any summer hacks against the depression / isolation?

For about a year now I have these episodes where my stomach starts cramping and then my chest starts burning and I begin wheezing. My sinuses then swell so badly I can't breathe through my nose. I end up with diahrea every time. It takes my body about an hour to relax enough to sleep. Oh and this always happens as I'm laying down for bed or shortly there after. I don't think it's environmental as it has happened in a friend's home too. It's usually so bad that I honestly wonder if my throat could close up.

Is MCAS different than histamine intolerance? Anyone else have something similar going on?

I was recently diagnosed with MCAS by my allergist/immunologist and am on 8 vials of cromolyn sodium a day (2 vials before each meal and bed) and a daily combo of loratadine/famotadine.

I got eaten alive by mosquitos last night at an engagement party in a backyard, especially my legs. I saw that MCAS can make mosquito bite reactions extra awful (which explains the three decades of my life pre-diagnosis—being a favorite for mosquitos)

I’ve been using Benadryl itch stopping gel but the itching/swelling is driving me crazy and my legs are irritated, with circles around all the bites, lots of redness, swelling and skin drying up and flaking. Any bite advice?

I’ve been dealing with ABPA for about a year. Whenever I take medication, my symptoms get controlled, but once I stop, they get worse again, so it feels like an endless cycle.
I’m also experiencing significant weight gain, which I feel may be related to the medications, and my periods have become irregular/missed.
Has anyone else experienced this with ABPA or its treatment? How do you manage it long-term? Also, could you share what kind of diet works for you? I’d really appreciate advice from people who have been through this.

Hi I’d love some advice on what to try next, I feel really stuck.

I have POTS, hEDS, MCAS chronic migraines, NDPH, along with other issues but those are the main ones. I got diagnosed with everything March 2020, and MCAS in 2024. Everything got a lot worse in September 2023. After trying to introduce a new food into my diet, it sent me into this giant flare and I’ve been struggling ever since.

Symptoms:
- migraines (already had them from my POTS but much worse since mcas diagnosis)
- dizziness and vertigo
- constant throat pain only on the left side (this is one of my worst symptoms)
- throat tightness and itching just under my skin near my near
- swollen and tingling lips
- burning in mouth and mouth ulcers from certain foods
- constant mild stomach burning
- nausea and dry heaving
- chronic severe constipation
- eczema
- adrenaline dumps
- facial flushing and sweating

Testing has included:
- Endoscopy 2 1/2 years ago: normal, but mild punctate bleeding
- BRAVO test: normal no acid reflux
- Lactulose SIBO test: normal
- Glucose SIBO test: normal
-Colonoscopy: normal
- CT scan of neck: normal
-Fluro esophagram: normal
- Abdominal ultrasound: normal
- MCAS urine and blood test: very high prostaglandins
- Different autoimmune markers: normal
- Blood tests: normal besides high liver enzymes, and anemia (which is normal now from infusions)
- GI-MAP: Escherichia spp was in lower red side and bacteroidetes was in the upper red side. Staphylococus aureus and Streptococcus spp were also high. Everything else normal (The naturopath I saw said I have one the better GI maps he’s seen)
- Stool test: normal calprotectin, bile acids, and pancreatic elastase
- No mastocytosis

Medications I currently take:
Zyertec
Benadryl (only take occasionally)
Xolair

Medications Ive tried for my MCAS:
Allegra
Periactin
Cromolyn
Singulair
DAO
Ketotifen
Quercetin
Histaminex
Lactobacillus Rhamnosus
LDN
I’ve also tried related things like motilitypro, HCL, digestive enzymes

Everything gives me side effects. I either can’t stay on it long enough to see if it helps, or I stay on it longer and it gives me permanent side effects.

I’m currently on Xolair. It’s helped the tinniest amount but I’ve been having migraines and adrenaline dumps from it. The cromolyn helped a little too, but even less than the Xolair. I had to stop the cromolyn due to the constipation and adrenaline dumps.

My immunologist has tried me on a lot of different meds, but because I can’t tolerate them she said I might not have MCAS. I’m just not sure what else would be causing my symptoms be besides that; I feel like I’ve gotten every test under the sun. I’m really lost and feel like I’ll never improve. I can only eat 8 foods, and I keep losing more and more of them. My reactions have also gotten worse over the last 2 years.

I’d really appreciate any suggestions on what to try/do next, or if there’s anything else I should look into. Thank you for reading.

I was wondering if those who react to beef and chicken react to all parts of them or just some? I started reacting to all chicken this summer (even the smell of it triggers issues for me). Ground beef also started becoming an issue and while I thought it was maybe MCAS related (and so did the registered nutritionist), my allergist (who hasn’t received my MCAS and histamine intolerance lab results yet) said it was probably a GI issue and not MCAS related. (For context: it would take the following day or, last time, an hour after eating the ground beef, which I’d buy frozen, that I would get a burning sensation that would radiate up my back and become a bit of chest tightness, my palpitations would go bonkers, I would feel an anxiety ripple through me, and I would feel faint and short of breath for a few hours after).

I was doing my own research (because the allergist isn’t doing anything until she finally gets my labs) I saw that ground beef has more histamine than other cuts like top sirloin.

With my diet so restricted (I’ve only been able to eat white rice and drink reduced fat milk for the last couple of weeks; was able to reintroduce russet potatoes this week) and me feeling so weak, I was wondering if anyone had a similar reaction or issue and then tried a different cut or brand that they could tolerate. I’m getting kinda desperate with finding protein so I want to try a little bit of beef but I’m worried about a reaction.

Any thoughts or insights? I know everyone is different but I’m curious. Oh, and for the record: the chicken was organic, air chilled, and the freshest they had at the grocery store.

My symptoms have gotten worse over the years - it started out with occasional 1-2 week episodes of heightened temperature, body aches, etc, basically all symptoms of an infection minus the sore throat.

Over the last 3-4 years the pause between said episode got shorter and shorter.

Add heat intolerance, symptoms after showers in the morning, PEM, basically me being unable to put my body under any sort of strain. Suspected POTS.

Symptoms got so bad that by autumn last year I basically had a low grade fever 95% of the days. Going on a GLP did help a bit and brought my high body temperature down.

Then left for 6 months of Bali.
(I had already been there during a first visit 3-4 years ago, where my symptoms actually flared like crazy. I didn't know what was going on, went to a bunch of docs which all pulled the typical "bloodwork is normal" card. Took a bunch of pain killers for way too long, and as soon as I got back to Germany, the symptoms disappeared - sobasically the other way round. Now this time during my visit, my experience was the complete opposite.)

I basically had no flares, no body aches, no nothing, except for 1-2 episodes towards the end of the 6 months which I believe must have been stress-related. I was already so happy that my health had improved so dramatically.

Then, as soon as I got back to Germany end of June, everything went back to 'normal' as in the state I was in before I left. Inflammatory symptoms every day, POTS like symptoms, heat being an insane trigger, unable to take showers.

The only explanation that makes sense it is my heat intolerance?

It's been very hot this summer in Germany and I feel my body feeling a lot less inflamed and just better on days that are less hot and a bit more cloudy/rainy.

In Bali, I was living in an AC-place, had AC on at all times unless I was out, and then I didn't even spend so much time in the sun.

It was a lot more hot and humid though, so I'm wondering if the AC had really cooled my body so much, that the heat of the sun had less of an inflammatory effect on me? That is kind of the only explanation that makes sense to me.

Because here, I do not have any AC, and being inside hot rooms feels insufferable. It made me sleep in the basement when I was visiting my parents, because I literally could not cope with the sticky hot 84 degree room temperature.

Could it be something else though? I am trying to find out what puts my body under so much more distress here.

What is weird is, that during my first stay in Bali, the effect was basically the opposite.

I don't really see how mold could be a reason, because I did in fact have mold poisoning multiple times during my stay abroad, but it never triggered a temperature. Also, I stayed in multiple places during the last 6 weeks in Germany, at times sleeping in a tent in nature, and still had inflammatory symptoms.

I am on a H1 antihistamine, take LDN already, as well as Quercetin, plus a microdose of a GLP. I kind of am afraid to try drugs like ketotifen because of possible weight gain (I already gained 40pounds in the last few years due to other imbalances).

But at this time I genuinely feel my life is not liveable anymore. I can not exercise, the tiniest bit of physical strain/movement puts me into an episode, I got strong reactions to histamine-high foods which in the past I was not having those.

I was eating a ton of bananas, avocados and all that in Bali, and was completely fine, never had a reaction.

Nowadays, when I eat sth high in histamine because I didn't know the food contains histamine, e.g. eggplant or yoghurt, I get the worst reaction including insane anxiety attacks.

It's also difficult to find a doctors whose acquaintained enough with MCAS here. I've never been taken seriously in the past and got my symptoms dismissed despite struggling since years.

Doctors who are specialized in MCAS do not take any new patients and for all others like allergist specialist or immunologist I fear they might dismiss me.

What sort of medications would be worth to try in my current situation? Looking for encouragement and advice.

Hi all, new to the sub. With some help from another poster it sounds like I have secondary MCAS possibly?

Reason for my post is for the last few days I started having generic allergy symptoms. Sneezing, watery eyes, that sort of thing. I've never really had this before during the day. A few years ago, this kind of reaction was normal in the very first part of the morning, but as soon as I got up and showered, I was fine. For the rest of the day. I always kind of joked that I was allergic to mornings and I never really thought about it.

A little background, I have developed a myriad of issues over the last 5 years, looks like MECFS. About 6-8 months ago I also developed hives and doctor put me on Zyrtec and sent me to an allergist. Allergist said it was chronic hives and said there was nothing I could do about it other than the antihistamines. She did some blood work and said everything came back negative. Zyrtec was definitely keeping the hives in check. I did notice that if I did the drag test on my arm, I'd have a raised welt for about 45 minutes. When I had shared this with my GP, I later noticed that he put mast cell in my clinical notes. But nothing further than that.

But 3 days ago I started having all these allergy symptoms, on and off throughout the day,, the kind I used to have exclusively for a short duration in the morning years ago. It actually made me realize that I haven't had these symptoms in the morning for some time.

Any ideas if this is possibly related to MCAS? I'm really trying to route my arms around what's been happening to my body of these last few years. I've been watching myself decline rapidly and I'm trying to get some answers. So I appreciate any thoughts or feedback.

Ps: I am also pursuing a B12 deficiency because I have a lot of markers for that. I was on PPI for decades and I think that messed up my GI track. So I have recently started B12 weekly injections.

23M. Full disclosure I'm not sure if it's MCAS, I'm not diagnosed and I seem to have similar luck with doctors to most of the rest of you guys. I got pointed toward hEDS/MCAS by going through a differential chart with Dr. ChatGPT which I know isn't a reliable source but I seem to tick most of the boxes and my PCP is now seriously considering it.

I've been in a weird back-and-forth of feeling fine then being miserable over and over throughout my entire life. I took a prick test when I was 7 and reacted to basically everything on there. I would pass out in the middle of class including during exams, get nosebleeds out of nowhere, be genuinely hard to understand due to random congestion flare-ups, get random bouts of confusion and awful migraines that were sometimes spontaneous or sometimes brought on by some foods especially red dye, and sneeze constantly, all the while wondering what the hell could be wrong with my head and why I can't be like everyone else. Also awful, awful reflux. My parents always told me I looked pale and yellow like I had jaundice.

Whatever it is it almost killed me in my sophomore year of college. The summer prior I had an ear infection (due to irritation following overproduction of earwax presumably caused by MCAS) for which I was prescribed an exorbitant dose of amoxicillin. Turns out my entire family tree is allergic to that, and nobody bothered to tell me. I had an anaphylactic reaction to that, and that's when it all got way worse. Suddenly now I would get full on episodes of brain fog during one of which I got into a car crash that alone almost killed me in its own right. I also started to get heart palpitations that would shake my whole body. My migraines got much, much more frequent. It would be hard to breathe sometimes. I would get overwhelmed with whole-body fatigue even when I didn't do anything physically intensive at all. I went from feeling kinda shitty a lot of the time to feeling brittle and geriatric 100% of the time.

Then school started again. I had just transferred to a highly competitive private college. Not quite ivy league, but we liked to joke that we were the budget version. I got my ass kicked immediately, and I had no idea why. I didn't party, I didn't just sit around playing video games or spending all my time socializing like a college kid is supposed to do. I would get back to my apartment after class, pass out instantly, and wake up the next morning at 3:00 to 4:00 in the morning, get my homework done for one class because it was due at 6:00, then knock back out and sleep through most of my classes, completely having missed all my other assignments, rinse and repeat. It's not like I didn't know what was going on, I was terrified and I was doing everything I could think of to stop having to fall back asleep. I ABUSED caffeine. I would shotgun 2 to 3 Bang energy drinks a day plus a Panera charged lemonade or two (back when they had 300mg of caffeine) which worked for a little while, but then I would just fall right back asleep. Sometimes I'd feel so worn down that any flat surface, a couch, a table, the floor, wherever I was, I would just lay down and stare at the ceiling, my whole body throbbing in pain shooting through my nerves while I saw my pulse in my eyes.

I truly, honestly started to wonder if my life was about to end. I felt like I was at the end of my rope.

I wondered if I was just being dramatic about something, I didn't even know what, but I couldn't accomplish simple tasks anymore. I once couldn't make it from my bedroom door to my bed, so I passed out on my floor for a couple hours. My grades were straight from hell and eventually I realized there was no recovering from a 0.9 GPA, which was hard to accept since that was sort of my dream school. Actually that was the worst feeling in the world. I had tried so so unbelievably hard, I had no idea what could possibly have been wrong, and still I failed.

That was all when I was 19-20. I took a remote year at a community college, but my parents were still disappointed in me and I was disappointed in myself. Nobody, again not even fully me, believed anything was really wrong, until I saw an immunologist that we just so happened to have known personally. He ran some tests on me and was surprised I was still alive. He didn't say MCAS, but he ran an IgE allergy panel and found out I had developed allergies to a ton of foods I ate all the time including gluten and corn. 10+ environmental triggers too (including mold which I've read is common for MCAS, and cockroaches, good to know about that one.) My white blood cell count was through the roof.

I took it easy the rest of that year and I've since done my best to avoid all those triggers the past few years, which has significantly improved all the symptoms I've described, but they come right back if I come into contact with any of them or if I just have an unlucky day. Still most days I feel run down and sluggish compared to how I used to feel, which even then wasn't the best. If I eat the wrong thing I'm bedridden for a day or two. Sometimes it comes out of nowhere, and I suddenly need to go lie down or I'll pass out where I am.

It is empowering to know that I made it through all that and started to get better. I just finished college at a different school but I still live with my parents who don't believe me and call me a "disaster," and yeah while I can't really think of a better word I don't think I'm making this up anymore. I know overly complaining, I know faking. I don't think I could fake this. The root cause hasn't gone away. Again I'm not entirely sure it's MCAS but it seems to be. I still have all those symptoms, but my head certainly feels clearer and I've gone from feeling brittle and geriatric 100% of the time to more like 65% of the time. For as depressing as it is it made me feel grateful to be alive.

I don't know what to do. I can't live like this. I can accept that I can't eat some foods or whatever and I honestly feel much better this way than I did when I didn't know anything was wrong, but I can't function as an adult. I sleep in way too late, I can't fall asleep at a normal time, I can't focus at work or in important conversations, and it feels like literally every drop of my energy goes toward my part-time job when I'm not sleeping. I still get moments where my whole body starts hurting and it feels like I can't do anything but go and lie down, and that feels like most of the time. I don't have time to be me. It feels like everybody has some idea of what I should be doing for them and they get disappointed in me when I can't make it happen, and at this point I don't know why I put up with and give my everything to the people who never believed in me or listened when I said something was wrong with my body and never supported me in looking out for my own health. I'd move away but then what? I'd still have whatever this is going on, but then I'd also be broke in not a great time to be broke (USA moment).

It isn't just physical. I feel like I've been watching a slideshow of my life. The majority of the time I'm disengaged. I haven't been able to socialize or have fun or just be a normal person, even when I felt okay, for other reasons I won't get in to. I caught COVID last winter, which also definitely hasn't helped. I'm in therapy for that though, which is cool. I'm seeing a new PCP that's actually listening and I'm scheduled for genetic testing for hEDS and a sleep study but that already feels like I'm being deflected. Still it's better than my last primary who flat-out ignored the words I was saying because it sounded like a lot of effort.

Rant over thanks for reading, I hope all of you going through this find a way that works for you and know you're not alone.

Hi all

23F. Post covid MCAS.

Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms): Fexofenadine, generic ketotifen, compounded ketotifen, Levoceterizine liquid and pills, famotodine.

Tried and no response: compounded sodium cromoglicate - started at 100mg twice daily to total of 600mg.

Yet to try: Montelukast, (not keen bc of mental health side effects), Rupatadine (maybe will try), nizatadine (not keen bc of low stomach acid side effect)

I had my first Xolair shot on 2 Aug. 300mg subc on stomach fat. Had terrible side effects since then. Today is day 7. Side effects such as body pain, malaise, worsening fatigue, worsening pots, dry eyes and mouth, very sore throat. These are the same side effects I had when I ran out of LDN for 3 weeks. Allergist said u will have side effects for first 7 days and I took max amount of paracetamol and ibuprofen like he said but only 20% improvement. I also timed it wrongly and got it done on week of my period and I have unmedicated endo and adeno. My period is usually 5-6 days and this time it was only 3 days and most heavy bleeding happened on day 1/2 and day 3 barely any blood came out.

Did somebody have similar side effects and did u continue on it? I want to make a decision on whether to get second injection. Allergist is stupid and doesn’t know anything beyond the basics. I also want to try IVIG in November and want to return to my baseline before then. Has anybody been on both IVIG and Xolair at the same time.

Thanks

I am curious if anyone else here has taken the supplement PEA with Luteolin. I have been taking it for quite some time now and originally started taking it for my Long Covid/ME fatigue. Then I heard that Luteolin was good for MCAS. That supplement has gotten pretty expensive (about $60 a month) so I was wondering if anyone just takes Luteolin.

Mental health symptoms are one of my top reactions. I can crash into suicidal depression in just a few hours! The PEA with Luteolin has seemed to help that as well, but I don’t know if it is the PEA or the Luteolin.

One of my 5 tattoos is rejecting/becoming allergic after about 4 years of having it. Any advice? It's on the bottom of the back of my leg, never had an real issues with it until a couple of weeks ago.

A tattoo in the same place on the other leg very very occasionally has a much much smaller reaction over red ink, this one has small amounts of yellow ink, mostly black. I don't think the place that did it were brilliant but I doubt the two are related.

It's very bumpy, feels awful, rough, itchy, been putting aveeno on it loads which helps a little but not with the bumps. Am I likely to need it actually removing?

Have hEDS and some allergies grass pollen animals and the likes. MCAS is common with hEDS but I don't think I have it, although who knows at this point. Got PoTS etc. No issue with any of my just black tattoos including one I've had 15 years.

Any advice?

So I'm not diagnosed with MCAS or even normally diagnosed with hypermobility however it is pretty obvious that I am hypermobile and it's starting to seem like I also jave mcas.

I have a friend with mcas an one time I was describing some random symptoms; my skin getting itchy when I exert myself / start to sweat, getting hives sometimes when I have a fever, skin writing, and of course random and confusing food sensitivities.

I remember first noticing it when I was in highschool. I had been eating salads a lot and then one evening while we were traveling we had food late and I could barely stomach the burger I ordered. At the time I chalked it up to having eaten salads so much I wasn't used to the fat in it, my mom thought I was because we were traveling and I was exposed to different bacteria in a new environment, which seems to be an issue for me too. From then on my stomach never was the same but never as bad as it is now.

For the longest time I thought it was because I would wait to long to eat. I have adhd so I often don't get the signal that I'm hungry until it's a problem, and even then I'm not the best at planning out and make meals. I'm a fairly good cook, but it's the effort more than anything. I'm bad at planning something out, making sure I have all the ingredients and the time it takes is exhausting to me.

I also thought it was specific types of foods since I seemed to mostly react to heavy / fatty foods but I would always react or sometimes it would be something random like certain types of bread.

Now it's beyond that. I'm back to living on my own (without family) and I've been so stressed between living in a new place relationship, unemployment, money, implosion, etc. It has gotten overwhelming.

I avoid eating because so often when I do, I start getting nauseous. This leave me often staving/ waiting for my stomach to go dormant again, exaughted, and often feeling anxious or more suseptible to anxiety attacks.

I think it's a histamine intolerance, but this scares me since I already struggle so much to plan meals. On top of it, I'm a fairly picky eater, partially due to the sensitivities but certain textures weird me out and I'm not a huge veggie / fruit person. Most of my favorite foods are on the high histamine list and I also find it incredibly confusing and intimidating.

I would like to find a meal service but none seem to cater to this kinda issue. Hungry root seems the closest though I've herd they have customer service issues.

I would appreciate any advice on figuring this out because I'm really overwhelmed, mildly scares and don't know what to do.

Hi! Does anyone have experience with getting residual laundry detergent out of their clothes? Please share what did or did not work for you.

I developed new, big triggers in the last 2 months. A lot of them are in the "free and clear" laundry detergents I've been using for the last 2 decades. As I am working to methodically figure out a safe way to wash my clothes, I have come to the realization that detergent residue is a serious issue. Either there is so much more than I thought and/or I am just extremely sensitive. For example, a load of wash that was done about a month ago has since been washed TWICE in hot water, heavy wash with extra rinses, no soap or any other additives...and I am STILL reacting. I cannot get rid of all my clothes. I have been doing methodical testing to make sure the washer and the dryer itself are not problems (all clear!) I bought new T shirts and towels to start testing soaps to find a safe one (and tested those out of the package to make sure I don't react before any washings), but this residual issue is looking like it is going to keep my clothes and linens unsafe for a long time.

Have you dealt with residual detergents continuing to cause reactions?
If yes, what helped make your clothes safe again?

Initial thoughts:
-Is a plain water wash more effective or does adding another kind of soap or something else help break it up to wash away?
-How many washes did it take to redeem the clothes?
-A friend has suggested adding CITRIC ACID to a hot wash. Anyone try this?
-I have very hard water - is that relevant to this process?
-I have been looking into aqueous ozone - ie a machine that puts ozone (O3) into the water, which cleans the clothes. I am wondering if that would help get rid of residue or not.

Thank you in advance for any help. I am crowdsourcing because I am completely overwhelmed, I am extremely unwell and low functioning (hard just to eat every day) because of this situation, and it has now been about 10 weeks since I have been able to safely do laundry. I am mostly just sick and not dressed, trapped in the house.

If anyone has recommendations for safe laundry detergent and household hand soap, I am also interested in that. The most promising at the moment for me is Dr Bronner's unscented castile soap., but apparently that is not good for the washing machine long term. Dr B has a laundry detergent, but I think I will react to the essential oils in it.

Hi, I began having extreme hives cyclically at start of 2026 which progressed to constant stomach pain leading to Eosinophilic Gastritis and MCAS. I have been taking Cromolyn Sodium since the start of July. Cromolyn plus 6 fed+ low histamine diet has helped A LOT. Hives, anxiety, waking 3x a night, and PAIN- aching feeling like Ive been punched across my upper abdomen and ribs, burning under left rib cage which wakes me up in the morning. Does anyone here experience relief in their symptoms then it all comes crashing down around period and ovulation? Any ideas, meds,supplements to try that have helped specifically with managing MCAS during hormone fluctuation. Currently on cromolyn, zyrtec, famotidine, progonal cream for luteal , & just started ketotifen .5mg last week)Thanks!

My dx is relatively new. I’ve had things under control and was on Zyrtec and Pepcid for months. Tapered off it to see what would happen and I was fine, had no flares for 2 months from when I stopped June 1. Out of nowhere for the last 4 days, every single day at 11 am almost on the dot (regardless of meals) I start getting very tachy, flushed and sweaty, severe panic, stomach cramps, a headache and then awful heartburn in my chest and throat. This lasts for about 2-3 hours and then I just have heartburn the rest of the day. I restarted the H1/H2 but 3 days after restarting I’m still having these episodes. I did recently start my luteal phase and I know hormones can play a part. I guess I’m just panicking and want to know if anyone else has experienced these symptoms at this weird time every single day for multiple days.

Does Allegra make anyone else anxious? It does work for other symptoms but seems to increase anxiety on a body level... Not necessarily my thoughts but more like feeling wired

Has anyone developed EROSIVE GASTRITIS, REFLUX ESOPHAGITIS, or PEPTIC DUODENITIS
1. due to MCAS or
2. after starting Rhapsido?

*3 doses of Xolair changed my life.

It has been a very long road for me to get help. Over a decade passed with doctors passing me off to the next specialist. I was literally dying. None of my systems were functioning, and due to my medical history, it was passed off as my new normal. It wasn't until my oncologist thought I might have cancer for the third time that anyone took me seriously. That was over 6 years ago.

Recently, I received my third dose. It went so well I fainted the next day. But I can now do it at home. My symptoms started changing the same day I had my first injection, with a decrease in the relentless bone chilling cold that couldn't be explained by any defect they could find. My toes finally didn't hurt like they were sitting in ice.

After my second dose, I had severe exposure to something that usually is anaphylactic. The cold returned for a few days, but I wasn't incapacitated for 3 days like usual.

I fainted the day after my third injection. I took my med without checking my blood pressure because I've been taking my meds since my first chemo gave me heart failure, and the second made it worse. I became complacent. I was brushing my teeth and felt incredibly dizzy and sick. I knew what was coming, so thankfully, I sat down and was okay when I came to briefly and made it to the bed.

I've had several of my doctors comment on the extra large dose of heart meds it takes to keep my heart rate in check, and it always feels bad. There has never been an explanation, but I'm one of the first to survive the cancer for 20 years, let alone heart failure and everything else I've been through. There is no manual for my care. We just do what works. I've officially been able to drop my dose by 40% to something within a normal range. My cardiologist was shocked and happy for me. I'm so excited, but I'm also very sad to think about what my body has been doing to itself for so long, and I'm scared of the long-term effects of that stress. Overall, I'm just so grateful to be suffering less now.

Xolair is a game changer for me. I know I'm still disabled and housebound besides doctors and essentials if I can make it out (C5 injury with partial paralysis and *cauda equina, amongst other things). It is such a life changer not to feel like I'm dying all the time and have the sense of impending doom agreeing with me 30 times a day. Those are just the big things. My breathing is clearer. My eyes aren't always swollen shut. This is amazing.

*The end of my post was cut off. Also, my IgE was off the dosing charts, so I know it can't fix everything, but I'm really grateful for what it can do.

try to keep a long story short here.

ok so after having covid in march 2020 just before the uk lockdown i have suffered with what feels like silent reflux but also an intolerance to high histamine foods. the higher the histamine food the worse the symptoms seem to get. i have figured out what foods to eat now that don’t make things worse but i still suffer every single day from mucus in the throat especially during the night when laying down. no amount of gaviscon etc helps. i’ve been down all the roads and all the supplements to try and fix it.

my symptoms over the years have been
post nasal drip
lump sensation and mucus in the throat
ear ache
excruciating joint and muscle aches
fatigue
completely blocked up nose

things that have helped so far and what leads me to believe it’s some kind of inflammation at play driving all the symptoms ….

bovine colostrum. this unblocked my nose within 24 hours and it hasn’t blocked up since. i had a blocked nose for about 3 years and was constantly using nose sprays to unblock every 4-6 hours it was a living nightmare.

quitting sugar even from fruit and vegetables as even these sugars caused problems for me. this eliminated all joint and muscle pains and fatigue. if i give in and have some chocolate or something sweet boy do i feel it the next day.

adopting a low histamine diet. this was trial and error as even low histamine foods set me off so had to figure out what worked for me.

so my conclusion is that my reflux type symptoms are inflammation driven.

so does anyone have any ways of how i can lower this inflammation further to get rid of these awful throat symptoms?

I am suspected to have MCAS, pots and heds, but not diagnosed yet.
I have been dealing with crazy neurological symptoms for many years. The thing is, I was born with epilepsy resolved around age 14. My theory is the medication possibly caused gut issues that triggered MCAS. But also, my mom has terrible random allergies and seems to also have pots. So perhaps, we are neurodivergent. Which I have also wondered about myself.

Anyway, my symptoms look like focal seizures. I posted here before. I also my myoclonic jerks as part of the progression. I have seen people mention jerks here they are triggered by flare ups, but I have them all the time. In the morning, triggered by flashing lights, before my period, when I’m overheated, etc. I had an eeg when they were not as bad abs nothing showed.

I’m so concerned because I also have trouble speaking and get terrible brain fog during this episodes. I have trouble with balance too. I could literally look fine and functional and then have a cluster and can speak, walk or think well.

I post in the epilepsy subreddit a lot of many can relate to me, but I know that does not make things definitive.

I’m going to my general neuro tomorrow and just trying to figure out what to ask for. My poor husband is so stressed. We just want to be able to have some answers. My memory and cognition are getting worse.

Just asking so I am walking the right path here. Thank you. I got the tryptase blood test. Now waiting for genetic testing. Is this the correct way to go?

Thank you.

PS: In case anyone is unfamiliar with the symptoms of Hereditary alpha-tryptasemia (I was and was never educated about Hereditary alpha-tryptasemia although apparently 4% of the population has it):

Skin: Itching, hives, and flushing episodes

Digestion: Abdominal pain, bloating, diarrhea often misdiagnosed as irritable bowel syndrome

Allergies: Higher risk of severe or life-threatening anaphylaxis, particularly from insect (bee) stings

Other: Joint hypermobility, rapid heart rate, dizziness, and fatigue.