anyone have experience mast cell disorder and it causes post exertion malaise? I’m having such a hard time doing normal exertion without getting a feeling of internal shakiness and crashing energy levels. My hives are way more active as of late and other feelings of orthostatic intolerance.

Hello, I have been dealing with heat induced hives for about 12yrs (started as a teen).

My first allergist suggested I stopped working out as it was causing near anaphylaxis level reaction (throat closing to the point of struggling to swallow liquid but can breathe).

My new allergist has tested my tryptase and came back high, twice. My hives are getting more easily activated than ever and it’s scary! I’m going to start doubling my levocitrizine dose.

I’m also going to start taking NaC, pepcid, quercin.

My gp today dismissed for a connection between mast cells, orthostatic intolerance (seems like pots), and exertional malaise.

She prescribed propRANolol. I’ve been using trazodone to sleep lately.

I changed my diet and my eosinophilic esophagitis got way better.

Has anyone in this sub reddit taken Barzolivumab for MCAS? Has it helped and how?

I just got my lab results from my endoscopy/colonoscopy and it showed 33 mast cells per high-power field in my colon. There says something on the pathology report that it could indicate mastocytic enterocolitis. I know I don’t have a definitive diagnosis until I see the doctor, but I feel relieved that my suspicions of mast cell disease are valid. I also have candida in my esophagus. I’m hoping to get treatment for both soon and am happy to have some sort or answers.

Has anyone here dealt with similar results?

Here is what it specifically said in my pathology report:
An immunohistochemical stain for CD117 demonstrates an average of 33 immunoreactive mast cells per high-power field (HPF), evenly distributed in the lamina propria.
Some patients with persistent diarrhea (often accompanied by abdominal pain), normal endoscopy findings, and this degree of mast cell infiltration have been shown to respond to antihistamines or mast cell stabilizer therapy. This condition is sometimes referred to as “mastocytic enterocolitis.” Some studies have also described an association with small intestinal bacterial overgrowth (SIBO).

just curious has anyone seen any success weightloss just by microdosing a GLP1? the weight gain from antihistamines has sucked ass lol

I have a very complex case of MCAS and am struggling to find treatments that provide relief. My symptoms are primarily neurological, without the typical hives, itching, or flushing. I experience internal tremors, intense burning sensations, and neuropathy.

Unfortunately, nothing I’ve tried so far has provided significant improvement. I have tried cetirizine, Allegra, ketotifen, famotidine, PEA, quercetin, luteolin, and DAO, but I continue to have significant symptoms.

I’m looking for doctors who have experience treating complex MCAS cases, particularly patients with predominantly neurological symptoms, and who may be able to help when standard antihistamine treatments haven’t been effective.

I’m having a MCAS flare day. I decided to try out a continuous glucose monitor about 10 days ago. Today is the first day I’ve dropped below 60 mg/dL. Even when I ate a handful of candy corn I haven’t been able to get my blood glucose over 91 mg/dL. My usual blood glucose has been squarely between 70-140 with an average blood glucose of 94. Does anyone have some insight to what is going on?

I posted in an another sub because I feel like it could help!

I hope this is okay to post, but I really feel like it could help so many people. Always consult your doctor, because this is just my personal experience, but KPV Peptide has been life changing for me as someone with MCAS.

I’m going on 3 weeks now, and I’d say about 90% of my flare-ups are gone. And when I do accidentally eat something that doesn’t agree with me, the flare-ups are barely there and don’t last long at all.

I would definitely do your own research and talk to your doctor before trying anything. Peptides can have real effects on the body, so I personally treat them with the same level of caution as I would any other treatment.

ANY ADVICE HELPS!! PLEASE I AM OPEN TO ANY IDEAS☺️

Hi!! I am a 24yr old female, recently got diagnosed with MCAS after years of having issues that have triggered these much more severe reactions out of nowhere. I have had random hives/flushing of face all my life and was dismissed as heat intolerance. Unfortunately most of my flare symptoms affect my GI now, so for the past 6 years I've had on and off SIBO and "IBS" after getting sick with a parasite in 2020.... I thought it was just normal to battle these symptoms until these past 6 months. I also notice that my hormones may be playing into these severe flares, so I'm starting to go down the endometriosis track to see if I have that, but my labs are phenomenal and I'm on a GLP 1 because I have "insulin resistance syndrome and metabolic resistance syndrome". After being on the GLP 1 for 6 months, I noticed my everyday IBS flares had calmed down, but when I would get in one, it would be much much more painful and bizzare than the normal stomach ache I had previously. I would have weeks of good days but my flares became more severe and more consistent with allergies (I could tell I had an upset stomach coming because my body would start having hives and itch around my belly button, or my palms on my hands would itch a ton). I went to an allergist and did a bunch of allergy testing (I've always had bad outdoor allergies) and all the allergy testing triggered my first aggresive flare up in May. I was down for four days with a low grade fever, flushing and bizzare abdominal bloating and pain. After that I started a bunch of medicines (h1/h2 antihistamine combo plus singulair and oral cromolyn sodium daily) and I have been able to have pretty solid days, but I triggered another flare back in June (I did a solidcore class, ate a plain dinner 30min later and then immediately took a hot shower) and was in that flare for over a month. It took taking 2 Benadryl on top of my medicine daily for two weeks and a dosage of Xanax to pull me out of the flare. My flares no longer are just an upset stomach... it's brain fog and intense body aches accompanied by extreme bloating and extreme abdominal pain. It's scaring me because the slightest amount of stress physiologically feels like it can put me right back in it. I was thinking of trying busparin as a daily anti anxiety med to lower my systemic stress levels because I get panic attacks when I start to feel a flare incoming (making it worse.)

Has anyone tried anything to help reduce thier stress aside from therapy and stress reduction? I work fully in person and that has been contributing to my stress load but I am not in the position to switch jobs right now! Also any tips or advice in general since I am new to this whole MCAS journey... I feel like I could survive more if my symptoms were just hives and flushing, but the extreme GI pain on top of my average "IBS" and body aches that are new and not something I experienced in the past 6 years have been wiping me out.

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Hello, beginning of 2026 I began having extreme hives cyclically, 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 every morning no matter what I take.

Does anyone here experience relief in their symptoms then it all comes crashing down again around period and ovulation? Please share any additional ideas, meds,supplements that have helped specifically with during hormone fluctuation. Thanks!

How to get through a flare when already on Allegra 2x a day, 2x Claritin, 2x Pepcid, low dose steroid, waiting to start low dose Ketotifen and Nemluvio shot next week. I started developing new triggers these past few months. I found a routine to get through the day with meds but now that I entered a flare and having more consistent throat tightness, and today some short of breath, lightheaded faint feeling (unsure if it’s allergy symptom, steroids give me anxiety too) not sure how to get through this with some new allergies around me at home that are typically well controlled but bc of the flare, I’m more reactive. Trying to regulate myself and manage stress. Resting. Trying to take care of myself but even having family pick up grocery orders for me, I’m reacting coming into contact with it (and no trigger foods in the orders). I’m not sure what I’m reacting to half the time so it feels like extreme sensitivity to cross contamination

Diagnosed with Hereditary Alpha Tryptasemia

I have a PCP visit coming up. Is it worthwhile to request labs, and if so, does anyone have a list?

Not sure if I have it, but it makes sense with what’s going on.

Thanks.

Long story short but had an endoscopy and I have reactive gastritis and an ulcer . Said it’s from drinking alcohol (which I don’t do) or taking too many NSAIDs (haven’t taken one since Feb) and said it as likely from bile reflux since I rarely take NSAIDS and since I barely drink. I had an ultrasound of gallbladder and everything looked normal. Now getting a HIDA scan in Oct. I’ve read bile reflux could also be due to motility issues which I’m
Leaning more towards that being it. Curious if that’s linked to HaT?

Hey guys! I’ve seen some discussion on this but wanted to know if anyone has more Information. I take ketotofin and cromalyn to control my symptoms and it works wonderfully. I am 4 weeks pregnant and asked the pharmacist if it’s safe to continue. He said to ask an OB who I won’t be able to see for a few weeks. He did mention it could be safe but there is no studies so he couldn’t say for sure. Does anyone have experience using these medications in pregnancy? Was your OB concerned at all?

I've tried everything for 8 years to figure out these flare-ups.

Everything has led me to MCAS / histamine intolerance. Has anyone experienced severe and chronic rhinitis with MCAS and/or histamine and tolerance? Tell me any insights into preliminary testing and then treatments that have helped you with diagnosis and the management 🙏🙏🙏 I have got a referral to an ENT and another allergy specialist so any insight you can give me would be awesome.

Does this happen to anyone else? During a flare up I will sneeze literally hundreds of times.... Copious amounts of clear watery drainage. I have to use pillow cases or t-shirts instead of tissues. ... I can't drive. I can't attend to any task really. And trying to be at work is out of the question.

When it's really bad I can't look at my phone or any localized bright lights without triggering even more rapid fire sneezes.

So far, negative test results for all allergy testing.

Sometimes it seems completely random, sometimes I'll have flare-ups for 5 days in a row. Sometimes I'll get a little mini flare-ups that will only last an hour or less. Benadryl does nothing loratadine does nothing I'm about to try in Allegra pepcid combo

When I sit still in one place or lay down in bed my symptoms subside, sometimes even halting the flare up all together. But if I get back up and move around, it's sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze and so forth.

Through I've dealt with intermittent hives and other skin flare ups that obviously had to do with some dysfunction of my immune system.

And I've spent this last year learning about and trying different dietary approaches to it's a possibility of histamine intolerance and the foods I was eating.

It seems like every time I tried something new I thought I saw some progressive benefits for a short time but then things will go back to these chronic flare ups at any given time.