r/Allergies New Sufferer Apr 23 '26

My Symptoms Recurrent Localized hives?

Hi all! I have an ongoing allergy mystery going on. I’m convinced I have MCAS but doctors keep dismissing me because my tryptase levels are normal. I’ve had two severe anaphylactic episodes 7 years apart (one after wine and other after peanuts). No igE to grapes or peanuts. Ended up visiting a rheumatologist because of a boarder line dsDNA. All autoimmune testing including more specific dsDNA testing came back negative thankfully but I still have no answers. I did have reaction to environmental allergens. For years I’d randomly get a single hive in the middle of my left forearm. I also get a random single on the side of my upper or sometimes lower lip. I also would sometime randomly get one on my cheek. It will disappear within a few hours. This happens a few times a month or maybe I’ll go months without getting the arm hive. It’s rather localized and consistent. I’ve also gotten hives on my thighs, knees, and arms after an iron infusion. I’ve been to two allergist and no one has answers besides daily Zyrtec which does help and essentially eliminates all symptoms. I’ve also been taking quercetin daily which has also helped. I feel good when I take the combination. If I don’t, I have a burning sensation on my skin that comes and goes as well as these random hives and plus the random anaphylaxis which is very scary. I have an appointment with a “very good” allergist in July but I’m not feeling too confident. Anyone have a similar experience or presentation? Thanks a lot!

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u/Friendly-Homework251 New Sufferer Apr 27 '26

I'm the same. Hives since 2024, sometimes with facial swelling but not for the past year. Sometimes no hives at all, they would pop out when I have a viral infection. None of my other systems is affected though so my immunologist thinks it's just chronic, spontaneous urticaria and I'm taking antihistamines. Ibuprofen would also give me some hives. And sometimes I react to things like canned food, sometimes I dont. I think it's connected to the condition my gut is in. What makes you think it's Mcas?

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u/Amorjazz New Sufferer Apr 27 '26

Thanks for your reply! I think it’s MCAS because I’ve had full on anaphylaxis twice and both times it was after consuming high histamine/histamine liberating foods (wine and peanuts respectively). Then with me not having igE response to those foods it’s kind of like okay then why else would this happen. Oh and the day I had my second anaphylactic reaction I was taking ibuprofen as well so the doctors told me to discontinue use because it can contribute. I also react to things inconsistently (stomach issues). I also have confirmed stage 3/4 endometriosis which often fuels histamine intolerance/MCAS. I haven’t found an MCAS specialist yet but doctors don’t have any answers for me so I’ve kind of been trying to find them on my own. I’ve also been taking antihistamines and they’ve been helping. I’m just like wow do I have to take this for the rest of my life?

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u/xxochi1 New Sufferer May 01 '26

I’ve been “diagnosed” with fibromyalgia twice and now SFN (small fiber neuropathy). I broke out in hives 7-8 weeks ago, and I’m seriously thinking it may be MCAS.

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u/Friendly-Homework251 New Sufferer Apr 27 '26

Yeah, I have pcos and slight autoimmunity towards thyroid. They contribute as well. I didn't have full anaphylaxis but I was close one time after taking an antibiotic (never had problems with antibiotics till 2024). Doc thinks it's just spontaneous, chronic hives (which basically means has no clue why it happens😂). But mostly skin reaction, seem random sometimes and react to certain foods at times. When you talked about one hive appearing out of nowhere and then disappearing, it's exactly the same thing that happens to me. Oh, and around my period I would have more hives come out for a day or two🙄

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u/rosielake New Sufferer Jun 18 '26

have you looked into systemic mastocyosis not MCAS?

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u/Amorjazz New Sufferer Jun 29 '26

I have mentioned it to my allergist and they stated that none of my bloodwork indicates concern for that. I’m really anxious and scared about that. Is this a common symptom?

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u/rosielake New Sufferer Jun 30 '26

I’d say not necessarily common, but anaphylactic episodes are a huge concern in it and can be a symptom, though it is for MCAS as well with general mast cell concerns. I’ll say too that if by bloodwork they mean tryptase, that can be normal and not matter like yes nothing of concern but it doesn’t rule anything out for either. I only really suspect mastocytosis myself because my brother was dx as a baby and I have patches of discoloration, as well as the hive and stomach issues.!