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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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@vostie I am JUST finding these support groups. I spent the past 3 years trying to navigate this alone. Live and learn. How did you get diagnosed with Long Covid and MCAS? I cannot find anyone locally who can offer much of anything on this.
@jgk177 I had to hire a concierge doctor. They charge you a monthly fee but you can see them for long appointments and can get an appointment in a day or two once you join the practice. She did not have experience with long covid but consulted with an expert here in Minnesota whose practice was full of long haulers. She had a long list of treatments to try and we just started checking them off.
MCAS was very hard to diagnose as few allergists here even try a diagnosis but with my mass cell load, it was easy when the right doctor was found. My concierge doc helped me with that as well as plenty of other referrals to specialists.
@vostie That is not surprising to hear at all. The fact that a person can spend thousands of dollars a year on health insurance and get sub par results is a huge part of this problem. Doctors don't have the time or the energy to "dig in" to anything that is out of very narrow list of aliments and as a result, millions of people suffer and never get the care they pay for, unless they can pay even more. I've been referred to THREE immunologists, none of whom test for MCAS. I now know before I even give them my last name, to ask first. The doctor that keeps referring me to people who can't help is a temp doctor in a practice I have been struggling with for almost 2 years. I recently tried to find a new PCP and the wait time is MINIMUM a year as a new patient. If not for the RD I have been working with for 2 years, (paying out of pocket) I would not even know what MCAS is.