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Has anyone developed MCAS since Covid?
I have had Covid twice - in 2022 and again in 2025. I took all the shots so when I got sick it wasn't serious, miserable but not serious. Ever since the first bout I haven't been the same. I had the infection in 7/22 and I started gaining weight because I was extremely fatigued and out of breath alot and my appetite kicked up. By January of 2023 I could not tolerate a long list of food that previously were not a problem. Example: oatmeal. the gas, bloating, fatigue and shortness of breath after eating oatmeal was off the charts. Then yeast, then quinoa, then chick peas.. it just goes on. In 2/23 I started getting severe pelvic and lower back pain that was relentless and connected to almost anything I ate. I tested positive for UTI and took 3 rounds of antibiotics because it kept "coming back" which killed my diarrhea but also the rest of my GI system. I've gained 15 pounds in 3 years, have crazy food sensitivities that seem to come from no where and I literally can't keep my eyes open after I eat. I sweat after a shower, and have the chills and cold hands when it's 80 degrees outside. Bloodshot eyes, smelly urine and gas from hell. I started taking claritin a few weeks ago- seems to help a teeny bit, but started Wegovy last week and felt like a normal human being again for the first time in 4 years. I'm trying to find a doctor who can help. I have seen 10 in 3 years and all tests come back "normal".
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BTW @djg3012 , @diverdown1 , @covidstinks2023 all- look at this: I just found this online TODAY!!
The Core Science: Mast Cells Express GLP-1 ReceptorsMechanism of Action: Peer-reviewed immunological data shows that human mast cells express GLP-1 receptors on their cellular surfaces.Stabilization Effect: When a GLP-1 receptor agonist (such as semaglutide) binds to these receptors, it acts as a direct mast cell stabilizer. It down-regulates the release of pro-inflammatory mediators, pro-inflammatory cytokines (like IL-6 and TNF-α), and systemic histamine.2. The Landmark July 2025 Case Series (Afrin, Weinstock, Dempsey)Study Citation: Afrin LB, Weinstock LB, Dempsey T, et al. "Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome." The American Journal of the Medical Sciences.The Cohort: The study evaluated 47 patients with treatment-resistant, refractory MCAS who had failed conventional histamine-blockade therapy.The Efficacy Rate: An astounding 89% of MCAS patients demonstrated meaningful clinical benefit across a wide range of multisystem symptoms, including gastrointestinal inflammation, neurological flares, and profound fatigue.Clinical Observation: Many patients reported rapid, dramatic improvements in food tolerances and a reduction in localized GI pain within weeks of initiating therapy.
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2 Reactions@covidstinks2023 ...HUH?Yeah...this person has LONG COVID.Wow.WE ALL here have been infected with the killer from China.We wouldn't be on this forum if we didn't have this deal.This isn't the first time China has developed viruses that kill people.
@h2998sc Are you 100% sure it is from China? The US has done some shady testing on its people as well. This is a group sharing helpful information to try and combat this virus, no matter where it came from. That is beside the point now.
@jgk177 Thank you. I want to know more about this.
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2 Reactions@diverdown1 Yes.I'm sure.Even the Chinese admitted it 'escaped' from their own lab in Wuhan.I'd ask you...what shady doctors?In the US.I'm just curious why you'd say something like that.Our doctors were left trying to pick up the pieces and get people well.Many good doctors out there.MANY.That are working on this 24/7.
Can we please not get into these theories here? I want to be notified when people respond to this board, (and I am) but it's not about where Covid came from. Please.. that's history, in the past, and I am focusing my energy on moving forward and finding help for the lingering effects of what happened four years ago. Getting into philosophical debates does not help anyone seeking relief for long term suffering, and it's safe to say anyone on these boards is suffering and hoping for helpful information and relief.
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3 Reactions@jgk177 Agreed.
I feel for you...I had nearly the same symptoms post COVID 2020. I would put off eating because as soon as I did, I would fall asleep. I was suddenly allergic to dairy, gluten, and sugar, gaining weight from anything I did eat, out of breath with a short walk from the bedroom to the bathroom, racing pulse/blood pressure sporadically, severe fatigue, sensitivities to temperature, low blood oxygen, and more. I feel lucky that 6 years later I have about 50% of my life back. I do have to take an antihistamine every day to minimize the MCAS like symptoms, low dose naltrexone to manage the fatigue and pain, magnesium for leg cramps, and a vitamin D supplement to improve my sleep and immune system, I still have to watch my diet and still have to pace myself like crazy or I will run out of energy, But I am losing weight again and have slowly worked up to .7 of a mile of walking a day.
@vostie Just wow. I'm so sorry for your suffering and blown away that our symptoms seem to line up to the letter. I've also worked very hard, through a maze of medical failures and ever changing foods that bother me vs foods that don't. The weight gain made everything SO much harder, I finally found a doctor who was willing to write me a prescription for a GLP-1 because my weight shifted past over weight on the the verge of being obese.. that idiotic BMI chart still rules decisions. The GLP-1 has brought down the inflammation (at least for the first 3 days after a shot) so I can feel almost normal for 48 hours a week.. I'll take it for now. In the meantime I'm finally shedding some of the weight that makes me feel even more sluggish. I do feel the exhaustion and other symptoms (insomnia, red eyes, sensitive teeth, chills, sweats, etc) by day 4 after the shot, but I'm only in my second week. I have hope that aside from losing another 15 pounds, the meds will continue to tamp down the inflammation in my body everytime I eat. The ONLY way I can eat without falling asleep is if I eat 1/2 cup of food and not a bit more. Who can live like that? I mean I can when I'm home alone, but how do you do anywhere or do anything like that? I never gave up the gym because it's my mental health care.. if I had stopped working out, I don't think I'd still be here. But for sure I cannot do what I did 3 years ago before this started. I am trying to get into a Long Covid program in NYC, if I do, I will share whatever I learn here. Please take care of yourself!!