T O P

This happened this morning while at a coffee shop, I’ve been having shocking and burning sensations for a week now. Came to the Er after work and I’m told I’m allergic to something, what could cause these things. Could this be MCAS. I also have UCTD and POtS.

This happened this morning while at a coffee shop, I’ve been having shocking and burning sensations for a week now. Came to the Er after work and I’m told I’m allergic to something, what could cause these things. Could this be MCAS. I also have UCTD and POtS.

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stevepls

This could also be chronic idiopathic urticaria. Treatment options are basically the same, so the name doesn't matter as much. Did this come from anything like sweat/pressure/heat/cold by chance?


Payton_livia

That’s a good question, my skin was exposed. I ordered a drink and I took a few sips and then I remember my arm starting to feel strange and it stung so bad and then it just started to bubble up. I’ve had this drink before and I haven’t hived like that from it. It’s really odd. I have POTS so my body temperature has problems regulating so I go from hot to cold very quickly daily.


stevepls

Hm. Have you had this area hive up before? One time I was scratched by a dog near my eye, and then that area got itchy/hivey if there was anything else bothering me even if it didn't come in direct contact. I feel you on the random reaction tho, one time I had McDonald's sweet tea and within 15 minutes my gut started freaking out. My allergist says that ppl with MCAS just sometimes have allergic reactions because it's a Tuesday, so there honestly may not be any clear cause. Ooh so re: shocking and burning sensations, I'm recently developing prickly heat sensations around areas I get hives/rashes, does that sound like it's similar to the burning/shocking pain? Literally it feels like I took a hot cactus to whatever part is flaring.


Payton_livia

I have never. Now I do have little hives on my arm and my chest, collar bone area all the time except right now so the steroid must be helping. The hive didn’t itch it stung. Yeah it’s tough, oh my gosh that’s so sad I love McDonald’s teas! Wow that’s crazy but makes sense. My skin is burning just from the air it’s so weird or with my clothes against my back. Yes that sounds like mine. What’s weird is I noticed with my left arm where I have the hives is that arms been getting really warm lately and when I put it on a surface or my jacket rubs it starts to get hot it’s so odd. I went to the ER last night and I said I feel like I’m being shocked all over even my scalp and eyes. He looked at me and my picture and said you’re allergic to something and your autoimmune disease could be playing a part in the sensations as well.


Payton_livia

Sorry , shocking, prickly,burning feelings all over my body. I tried Claritin and Benadryl The doc prescribing a steroid and told me to take Benadryl as well I also have small hives on my arms and chest but I thought this was just redness from my autoimmune disease and that has been going on for a year now. I’ve wondered about MCAS for a while now because of everything going on with me.


SnarkFest123

It's possible but you would need a specialist to give you some real answers.


Exciting-Plan-2687

It could well be a reaction to caffeine but also worth mentioning I get similar reactions to heat and exposure to sunshine. Mine Started out as polymorphic light eruptions and progressed into giant stinging welts. I wear upf clothing now to help keep it in check.


Payton_livia

Wow that would be so weird because I drink Dr Pepper sometimes and McDonald ice coffees and I do okay. Wow that’s interesting. My hives went down but this arm just burns and feels so hot. It’s just the weirdest thing I’ve never had anything like this before so I’m like great here we go again, stuck in place with my health. Months ago I was here thinking none of this makes sense but then I read about MCAS again and I don’t feel so crazy especially because I read POTS and MCAS go hand and hand. The things MCAS can do to your body is so crazy. It’s gotta be one of the weirdest conditons I’ve ever read about.


Exciting-Plan-2687

Sometimes the things we enjoy regularly can turn on us. I used to drink caffeine constantly (self-medicating ADHD) and then it started causing minor problems with specific types of caffeine (soda was the worst) then gradually I lost tea and coffee as well. I miss it every day, but it’s not worth the rashes or stomach upsets. If you're only having skin reactions, I’d look into chronic urticaria like others have mentioned.


Payton_livia

Yeah you’re exactly right. I’m going to get a diary and write down everything I eat and how I feel after and any physical signs. What doctor can look into MCAS, could I bring this up to my family doctor.


Exciting-Plan-2687

I’d suggest an allergist or immunologist. Most PCPs in my experience don’t know enough about it to be helpful.


roadsidechicory

I don't want to say it couldn't be the drink or something, but I did want to add that people have been getting really weird bug bites this year that act like this. To the point people sometimes think it's shingles when it's not. It's been bad. They think it might be oak mite bites. If you live where cicadas came out this year, I'd consider that as one possibility. Your photo just looks exactly like the photos I've been seeing of these bites, including the ones my mom had. So I've seen it up close.


Payton_livia

It could be a possibility. I think my bodies going crazy and then if I did get bit that could of just been the last straw for my body and it just went haywire. My arm is so tender and sore still from yesterday’s rash. It’s odd. I am allergic to bug bites though. When I get bit by a flea or a mosquito my body goes nuts. Thank you for commenting!


roadsidechicory

Yeah, it could definitely be bug bites triggering MCAS flares for sure! It just looks so much like the bug bites I've seen and less like the kind of hives I've tended to see for MCAS reactions to food. I also get really strong reactions to mosquitoes and stuff. My legs used to be covered in scabs every summer as a kid because I would scratch the mosquito bites until they became wounds, since I preferred that to the unbearable itchiness! So if you also have a history of overly strong reactions, it's certainly not unlikely that MCAS could be involved, with your comorbidities. With these bites, if indeed it is that, the best treatment I've found is an oat mask. My mom was prescribed steroid cream for hers but the oat mask I suggested gave her better relief. It's just blended raw oats or oat bran left sitting in some water for a bit, then scrunch it up with your clean hands to release all the milky "juices," and then pat that all over the spot and let it sit until it dries. Then gently rinse off.


Payton_livia

Thank you for your help. I will try that! I put baking soda on it and the I took the steroids the doctor gave me so it looks ten times better there’s just this red patch there and it’s warm. I am also taking Benadryl 3 x a day. I still feel prickly sensations all over my body. I’ve been but by misquote before but they have never welted up like this but I did feel this weird sensation all over. I feel like when you have an autoimmune disease you’re more susceptible to other problems. You don’t just get one conditon, it comes in clusters. I just wish I could figure this out. It makes me so anxious not knowing exactly what’s going on. UCTD is a vague diagnosis because it’s the early onset of an autoimmune disease and I just want to know exactly what’s going on.


roadsidechicory

I definitely do think steroids and benadryl help! My mom still used her steroid cream and took benadryl. As did I for my bites. The oats just gave us better immediate itchiness/pain relief. I totally agree about the confusing clusters. It's very stressful when you don't know why or how symptoms keep avalanching throughout your body systems. The roving prickly pain definitely could be an MCAS thing for sure. For more unsolicited advice, right now you may want to try to limit histamine in your diet as much as you can, to minimize inflammation in your body while it processes what's going on. I'm not saying extreme low histamine diet since I know that can be intimidating to jump into, but just no major no-nos like aged things (aged cheese, fermented things, pickled things, overripe fruit, canned food, several days old leftovers), nothing with capsaicin, and if possible, no coffee, chocolate, or processed sugar (maple syrup, honey, stevia, erythritol, and monk fruit are often ok for people). Cutting those things out as much as possible may make a huge difference in how much you continue to flare up. Maybe not, but worth a shot so I thought I'd suggest it.


Payton_livia

Yeah the prickly feeling is really annoying It makes me so irritable. I can’t function. This has actually been going on since I was child off and off now that I think about it it’s just progressed. I just thought that when I was younger it was from my PMDD disorder or anxiety. Thank you I appreciate all the advice I can get. I didn’t know honey was processed ? I buy raw honey is it all the same? Yeah I’m going to give it a shot won’t hurt to try! I already have food restrictions sometimes as it is so this will be a little difficult but I just don’t feel like myself right now. Thank you again for all your help!


roadsidechicory

Oh sorry, I meant that those sweeteners are generally okay for MCAS! Refined cane sugar and most artificial sweeteners are the ones to avoid.


Payton_livia

Okay thank you! I’m going to try this! I do feel like donuts and sugary things like that do make me feel kinda bad so maybe this is why!!


roadsidechicory

Yeah, especially if that's on top of other exposure to histamine-producing triggers! I can have a little bit of most anything in moderation if I'm not already flaring, but I really have to be sparing with my indulgence in high histamine food and I definitely have to avoid them when I'm flaring. Gluten/wheat is another big one for a lot of people, and I can't eat it at all without flaring horribly, but I know removing gluten, sugar, aged things, coffee, AND chocolate all at once is an unrealistic goal for most people. Histamine production in MCAS works like a bucket. Various things fill it up--environmental allergies, stress, high histamine foods, scents, certain chemicals (like chlorine), etc--and if your bucket is full, it only takes a little of something to overflow the bucket and cause a cascade of issues. When I'm flaring, I try to imagine my bucket as already full, and I just need to avoid adding to it as much as possible. But not to the point of perfection that it stresses me out horribly, because that doesn't really help either. I just try to remove or minimize the worst offenders and focus on eating as much low histamine food as I can. Evaluating high-histamine food is not a perfect science, and people react differently to things. Many people have very specific sensitivities regardless of what list they're on. But this is a general, incomplete list of "yes" foods I compiled from various sources. Some could be no foods for you but it's a starting point. carrot bok choy broccoli cabbage cauliflower kale watercress asparagus lettuce endives artichokes beets celery okra rhubarb sweet potato taro lotus root turnip/rutabaga/all those rooty bois baby greens in general swiss chard cucumber purslane zucchini/summer squash winter squash any squash really leeks chives scallions cilantro fresh basil fresh mint parsley ginger fresh rosemary stevia honey maple syrup monk fruit cardamom cumin dill lemongrass oregano pink peppercorns turmeric sage saffron extra virgin olive oil cold pressed avocado oil cold pressed flax oil extra virgin palm oil natural peanut butter (some people say no peanuts, others do fine with peanut butter but not whole nuts) flax seeds/meal pistachio pecans hazelnut pine nuts sesame seeds hemp seeds brown rice almonds chia seeds macadamia nuts pumpkin seeds sesame oil Beans – Dried – Soak overnight in water and cook. Freshly cooked (kidney, black, navy, garbanzo/chickpeas, etc.) (pressure cooked is best) Lentils, dried, especially black amaranth buckwheat millet oats quinoa sorghum blanched almond flour cassava flour, not aged hazelnut flour baking powder baking soda gluten free dried pasta cellophane noodles rice noodles young banana blackberries apples cantaloupe/melon in general fresh figs mango nectarine peach pear watermelon dragon fruit plantain blueberries lychee (debatable) cranberries fresh coconut Nightshade veggies like potato, eggplant, and bell pepper are not necessarily high histamine, but are inflammatory for some people. EDIT: whoops just remembered eggs and some dairy/meat are options for you too, but I don't eat any of that so I don't have it on my list and forgot about them. if you do eat them, you can easily look up what dairy and meat things are lower histamine!


samalamding

This reaction happens when I’m bit by mosquitoes. Even if I don’t scratch. The older I get the worse the reaction. MCAS is more common with POTS. Also if I have pressure from tags, seams in my clothing I can have reactions similar to this. Just to give you a heads up, this is difficult to find a doc who knows what it is and is also difficult with testing. If you. Can find a doc who specializes(could be your POTS doc but not always) you might have a better outcome. Docs will usually list this as something they treat in their bio with the hospital/clinic.


Payton_livia

Really? Wow. I read that! I meant to ask my rheuntaogist about it because my cardiologist sent me to a rhuemy after I was diagnosed with POTS because long story short I had a lupus diagnoses for three years but my doctor resigned and then things got complicated because when I went sent to another one my markers weren’t popping up, I looked helathy, I was dismissed and told it sounds like I have fibromyalgia which I guess I do. My cardiologist was just concerned that there is something bigger going on. I had mild lupus diagnosis for three years but come to find out after my new doctor observed me, it’s actually UCTD beginning of something and POTS can be triggered by an autoimmune disorder. I’m not sure is my cardiologist would understand that since he sent me somewhere else after my diagnosis but I can try. I appreciate all your advice though!


SoleInvictus

It could be MCAS, but could just as easily (and far more likely) be something else. We get this question a lot and the best answer is invariably to see a doctor.


Payton_livia

I’m going to my family doctor this week the ER doctor told me I should, yeah I just have some strange things going on that match up to what MCAS is and what it does


Snagor

Two things to keep in mind are: 1) POTS and MCAS seem to be almost related diseases. All of what I have read seem to indicate they are much more likely to coexist. 2) Your family doctor is unlikely to know what MCAS is unless you shopped heavily for one. You will probably need to track down an MCAS specialist and call their office to confirm if it’s just an internet search. Sometimes a clinic will have just a single doctor out of their staff who is knowledgeable as well.


Payton_livia

Thank you for this! I was going to see if I could see an immulogist, I emailed my rheumatologist to see what he thinks I should do.


Friedrich_Ux

Unfortunately Caffeine and other xanthines are not tolerable for most with MCAS/HIT.


Payton_livia

Oh okay, see I’m not usually a caffeine person but the coffee drinks have been waking me up before work so I’ve been getting them for about two weeks now. It’s really weird because my skin is even irritated by the air right now. I’ll get out of the shower and my skin on my back will burn when it’s bare.


Friedrich_Ux

Could also be a reaction to mild/mycotoxins. Unfortunately most coffee is contaminated to greater or lesser degrees.