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Has anyone developed MCAS since Covid?

Posted by jgk177 @jgk177, 5 days ago

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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jgk177 | @jgk177 | 15 hours ago
In reply to @vostie "Thanks JGK...I am in several long covid support groups (over 1 million people in the USA..." + (show)
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Thanks JGK...I am in several long covid support groups (over 1 million people in the USA alone) and am in the Scrippts LaJolla study on GLP1 for long covid. I sadly received the placebo, or am a GLP1 non-responder, but some of the other 1000 members of the study are feeling better. This study is using the GLP1 at the dosage schedule for diabetes but other studies are getting better numbers using micro dosing. I think when this study ends I will try the micro dosing to see if I can feel even better.

And I know what you mean about eating...I could fall asleep in a meeting if I ate just a little bit of food. That symptom is much better for me unless I have not paced myself. Then I eat and I sleep whether I want to or not.

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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.

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vostie | @vostie | 6 hours ago
In reply to @jgk177 "@vostie I am JUST finding these support groups. I spent the past 3 years trying to..." + (show)
Profile picture for jgk177 @jgk177

@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.

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@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.

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