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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@jgk177, COVID can certainly do some crazy things to your body.
Personally, I would recommend going to an Integrative Medicine doctor (out of pocket) and get his/her take on this. I question if you have Long Covid. I do. One of the OTC things prescribed for Long Covid was antihistamine. That rang a bell about Long Covid since you said it helped. Only a doctor specializing in Long Covid can diagnose this. COVID did a number on my immune system and pre-existing issues. I am better than I was, Praise the Lord, but, it has taken a lot of trial and error with supplements to get there.
To be honest, Primary Physicians and even some specialists are not that aware of Long Covid. I found out I have Gene Mutation issues for folates (your B vitamins) and my body does not detox like it should from the Integrative Medicine Doctor. He was phenomenal.
I had the infusions for my immune system and I could not tolerate them. It's costly, but, worth it if you can tolerate them.
I went to a Covid Recovery Clinic and was there for 2 hours answering questions. They were very thorough and diagnosed me. Is there one in your area?
I am so sorry you are going through this. I am praying for you right now. Blessings & Prayers.....
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1 Reaction@covidstinks2023 Thank you so much for taking the time and sharing ideas. Unfortunately I have already spent a fair amount of money seeing naturopaths and nothing they have offered has helped. I saw a TCM practitioner and she had me stop eating salads and anything cold which really helped a lot with my energy, but it's been 3 years. (I remain mostly 100% devoted to her ideas and although it's helped, I am no where even close to better). I am very very limited in what I can eat without creating absolute misery in my body which includes inflammation that creates both pain (pelvis and lower back) and fatigue that makes it impossible to function. This started after the first covid infection as daily headaches and fatigue. That lasted 2 months, everyday I headache at around 4PM. I could count on one hand the # of headaches I'd had in my life prior to that. I think it is long covid because it ruined my already struggling digestive system. I've been working with an RD for 2+ years and she believes its MCAS brought on by Covid. It may have also been the shots.. because once i got the last booster, my fatigue and GI symptoms exploded. I am going to contact a local clinic.. there is one nearby. THANK you again. So much.
@jgk177 I am sorry and empathize with what you shared. I have had this "virus" in my body for almost 4 years now. I believe it to be an autoimmune disease all it's own. Inflammation is at the heart of this. These are all my opinions from reading others' symptoms, my own symptoms and some of the research that has occurred. I have found that I can only drink water, sugar, and salt affect how I feel the next day. Fatigue, brain fog, post-exertion malaise, joint pain and other symptoms are things I go through. I never know how I will feel when I wake in the morning. My doctor has helped treat some of the symptoms. At first, in 2022, I had a positive ANA titer, RA, reactivation of Epstein Barr Virus, Folate was off the chart and yet my B12 was okay. I was told I had RA, which was not true as I have subsequently had labs over the last several years. My ANA is not flagged, no RA (although it feels like it some days) my folate is back to normal, B12 is okay and yet I am still having symptoms that inhibit my activities. It is brutal and yet, there is no one that seems to know what to do yet. At one point, I had GI issues, in fact it seems that Long COVID runs through so many symptoms from other autoimmune diseases. I did not get the vaccines due to fear and it turns out that some people that got the vaccines have bad effects, similar to what you have mentioned. If you get good or helpful information from your local clinic, please share here. Thank you for sharing.
There is some research regarding Mast Cell activation and Long COVID. I am posting a link here. It may only be the abstract, but sometimes it is possible to get the whole paper. There is other research as well. If you got to Google Scholar and type in Mast Cell Activation and Long COVID, there are some research papers that come up.
https://doi.org/10.5415/apallergy.0000000000000022
And another...
https://doi.org/10.1016/j.ijid.2020.09.016
@diverdown1 Thank you so much for your heartfelt reply and the links to those studies. I so understand how you feel, and I have had very much the same situation. I never really know how I am going to feel. I've spent decades taking care of myself, eating right, not drinking, getting plenty of exercise, including weight training, yoga etc.. I often feel as though my body has been taken over by an unseen undetectable force (I know it sounds crazy but the symptoms are nuts). I get acupuncture which always helps me feel at least slightly better for even a few hours. My latest issue is tooth sensitivity. I have been to the dentist and he finds no reason as all why my front lower teeth should be sensitive. It comes and goes.. along with a psoriasis patch on my back, joint pain, extreme bloating, bloodshot eyes, the fatigue from hell etc. My younger daughter lived with me when i (we ) got covid and she pointed out I have never been the same. The GLP-1 I started last week was a miracle. I felt amazing for a few days, but then it starts to wear off.. the important thing is as you said, this is inflammation which the GLP tamps down and then I feel like myself. I am longing to have my life back, to feel like I have some control over how I feel. The fear around eating something that will create a "flare" is not healthy, so I avoid social situations, and making any real plans because if I feel whatever this is I'm almost unable to function. Last time I traveled, all I could think about was when do I get to lay down.. this is not ok. And the medical community has failed me so many times, as is the case with so many other people. I'm sincerely grateful for the response and support. It's been a lonely 4 years..
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1 ReactionYou say Claritin seems to help some-my DR, suggested Musinex. Also helps a little, but I don't take it all the time.
@djg3012 thank you.. how do you feel musinex helps? And have you ever taken prescription antihistamines? Like Cromolyn Sodium (Oral) or Ketotifen (Oral)? What about double dosing? I have very specific symptoms.. mostly I get debilitating fatigue after eating almost anything and everything. My eyes get red and sometimes a get a runny nose. No hives, sneezing or wheezing. I have gone through elimination numerous times and apparently when someone with MCAS starts eating a food too regularly it becomes a "trigger" so as soon as I feel like I know what I can eat, 3 days later it starts over again.
Well-It's when I get a pressurie fealing in my head and when drainage in my throat causes hoarseness that I take it.But it doesn't do 100%. so sometimes I do Claritin for the price difference -either one only helps a little.And no, I do not take any oral prescription antihistamines-I do Flonase.And fatigue is my biggest issue ,seems to attack 2 or so hours after I wake up.I call it my 9:00 slump. I need to pay attention to the after I eat fatigue.
@djg3012 The post food exhaustion is my biggest issue. It took me a long time and a lot of consults (2 years) with an RD to notice and connect the exhaustion post meal.. sometimes even post snack. I have a single slice of sprouted toast with 1/4 avocado and 20 minutes later I start to feel like I was run over by a truck. I was so focused on the post meal bloat I did not even notice the connection. Some foods are worse than others. Apparently (for me anyway) anything fermented makes me want to lay down immediately. And all we hear is how healthy fermented foods are for your gut. I was taking fermented supplements and suffered like that for over a year. When I think about it now, how much better I feel since I stopped eating yogurt and taking those supplements, it's amazing. I still am struggling with all of these symptoms but they have been greatly reduced, and the GLP-1 pretty much stops most every single one of them.. it tamps down all inflammation. I found this to share about post meal MCAS reactions: Inflammatory Cytokine Storm: Digestion is an immune-heavy process. In people with MCAS, food can act as a trigger, causing mast cells to release not just histamine, but a cascade of inflammatory cytokines (like TNF-α and IL-6). This localized immune response causes a deep, systemic "sickness behavior" and flu-like exhaustion. I hope maybe this can help you!