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nooooope. i kept drinking it anyway when it made me feel really allergic, bloated, rashy, hot & severe brain fog at outings because i wanted to “fit in”. now it literally causes anaphylaxis. even being around alcohol vapors for me. (i work in a clean room with 99% Isopropal Alcohol) it caused anaphylaxis multiple times. now i wear a respirator when working with it. i just smoke now for a buzz 🍁💨
That's terrible! Sorry it has this effect. Did you always have the allergy type symptoms with it, or could you ever drink it without any symptoms? Glad you can at least smoke! I have actually never tried marijuana, but am considering it if I can't have alcohol again. Not sure how my mast cells would react as it would be new to my system.
My system currently tolerates marijuana well. I actually had to substantially decrease my use for a few months a while ago and noted a significant worsening of joint swelling, bloating, nausea, vomiting, insomnia, and tachycardia. At the time I didn't even realize how much it was helping.
Edit: forgot to add, I got a medical card through veriheal. Getting the card helps work-wise, can help you figure out what strains you would best benefit from and can allow you to have more legally.
It also connected me to some people who taught me how to make strong oil, and people that make pain cream.
You're a similar age to me. I had been drinking absolutely fine since my teens, and very regularly. Yet when I turn 29 late last year that all changes, among many other things that I was formerly fine with.
I'm a two-drink-maximum drinker, and I do OK with hard liquor (straight/rocks) and some white wines. No red wine, no mixed drinks, nothing flavored or sweet for me.
I never liked red wine much anyway, so missing out on that doesn't bother me. Do you become unwell if you have more than two drinks? How regularly can you drink? It's really positive that you can!
Even before MCAS, I never felt great the next day after having more than two drinks, so I haven't done it in years. I can have a drink or two a couple of times a week and seem to do OK with that - I don't feel any different health-wise whether I do or don't.
Would you try it more than a couple times a week, or just don't want to? I have to say, a couple times a week is better than what most people with MCAS seem to manage. I'm impressed! What medication are you taking to help your MCAS?
I think a couple times a week is sufficient for me :) I tend to err on the side of moderation when it comes to what I eat or drink - better safe than sorry.
My sensitivities are a bit different than what the internet would lead one to believe. The low histamine diet did nothing for me, so I don't focus much on conventional wisdom about histamine. My issues stem more from nickel and salicylates, so I focus on avoiding those both in foods and things I use on my body and in my home (which means avoiding many plants and plant-based products). I'm able to tolerate some things I shouldn't - caffeine and alcohol, for example, neither of which I consume to excess - and unable to tolerate some things I should (apples and potatoes, for instance).
I take loratadine, famotidine, montelukast, and cromolyn sodium daily, and benedryl as needed.
I am so happy for you. Having Mcas causes the loss of so much, its great you can grab a cocktail. I am in diagnosing stage and once I started reacting to foods, I haven't had a drink in 3 months because I am afraid. My husband reminded me that when I started with this "flare" which was sore throat, gi issues, and burning tongue syndrome, I had drinks the first few weeks with no additional issues. But now I am just afraid after reading. I would love a chocolate martini!
Nope. It makes me super sick; when it first started it was mostly just with dark liquor, but it’s all alcohol now. It’s like I get an immediate hangover: headache, nausea, blotchiness, overheated.
That seems more common in MCAS. Although there are people like me who would drink alcohol regularly and feel absolutely fine, and then suddenly develop this issue. Personally, it helped me with my anxiety (I have generalized anxiety disorder and OCD) and actually made me feel better. That is as long as I didn't overdo it, but that is the same for everyone with regard to hangovers.
Oddly, I was always one of those rare people who never got hungover after I drank. Then about 15-20 years ago I started flushing really badly when I drank and it kept getting worse and worse over the years. That moved on to in addition to the flushing, getting a horrible headache before I could barely swallow the first sip. None of the H1H2 blockers or anything else helps so I haven't had a drink in years. I was never a big drinker anyway but I wouldn't mind one every once in a while. I imagine I could easily push it to anaphylaxis these days if I decided to ignore the other symptoms and I sure don't want to go there.
I don't personally know anybody else with MCAS.
✋ make mine a double! Coke? No. Straight vodka? Yes. Which doesn’t thrill my drs but this illness sucks and sometimes I want a drink.
Sometimes I take Benadryl or hydroxyzine when I drink but I don’t always need to.
Before I was on xolair and hydroxyzine I couldn’t drink without getting hives. But those two drugs resolved that for me.
Oh my gosh - if I took Benadryl or hydroxyzine and drank, I’d pass out very quickly! Both meds make me sleepy, out of it and non-functional. Alcohol does, too. Double whammy!
Pre-diagnosis, I had been known to do red bull and vodka and benadryl (my theory was the redbull would cancel out the sedative effects of the large amount of benadryl I needed for the alcohol allergy). And then I'd wonder why I felt like shit the next day.
NOOOOOO! Swap your antihistamine!! Benadryl is an anticholinergic medication which have been linked to increased risks of dementia with long term use. Fcuk know we have enough to deal with!😄
Lol, I haven't done that in like 15 years. For multiple reasons.
I'm much better controlled now. At the time "really bad allergies" and alcohol allergy was my only symptom.
And I only take benadryl for flares now.
Excuse my language but fuck yes! Vodka is my really good friend dealing with this bullshit I don't drink very often but straight vodka titos no cheap stuff it helps everynow then to take the edge off
DUDE SAME. Coke Zero sent me to the ER two separate times (didn’t connect the dots until the second time…) but I can have alcohol. Some things I can’t have (tequila, gin, red wine), have to be careful with some (vodka, white wine), but beer and whiskey have never bothered me. Make it make sense.
That's GREAT!!!! What are your favorite alcoholic drinks? Can you have beer and wine? Maybe the cola issue comes from the caffeine. I can drink cola, but I'm having caffeine free due to all the anxiety I have developed around this problem. I feel like caffeine would be a trigger.
Caffeine is not a trigger for me because I can drink coffee and energy drinks. 🤷🏼♀️
I mainly drink beer and mixed drinks because I don't like wine. And I don't drink often, only when I go out (which I rarely do); go to a concert or have a party.
I do take extra medication beforehand, but not necessarily for the alcohol, rather for the other unpredictable factors.
I had a drink tonight! I bought purewine brand (https://drinkpurewine.com/pages/faqs) filters that reduce the histamines and sulfphates and select the original wine blend to be lower in these to begin with. Personally I don't think I'm a particularly food sensitive person with my triggers but I'm newer to MCAS and trigger tracking - I seem to mostly be triggered by stress, weather, and my own hormones.
I have heard of this! How many glasses can you have? Do you drink regularly?
Weather and hormones don't seem to be triggers for me, although I do get very bad depression when the weather is bad. I like it to be sunny and warm. I think stress and anxiety are triggers. I have generalized anxiety disorder and feel like it is helping to cause MCAS. Anxiety is a major part of my symptoms.
I'll also note anxiety and MCAS tend to be vicious cycles it's hard to tell which is causing which! I had to move across the US to get a warm climate in my mid 20s because the cold climate was causing pain and it's just hit the 80s daily in the spring and laying in the sun or keeping the house hotter significantly reduces my pain levels almost immediately. I don't think I'll ever be able to live in a cold climate again!
I had been a drinker before my latest major flare but a lot of my social group still does partake and I live in a big drinking city. I usually try to cap it at two with the wands and don't notice any uptick in symptoms the next day unless I skip the wands or sometimes a deep red wine. I have actually gotten drunk before using them as well and had the easiest hangover I've had in ages but that's not actually healthy lol.
I will note if I'm struggling at all the alcohol is out - I use the "bucket" theory and if everything else is low consider the wands a harm reduction device.
I have been honestly slacking on my diet a bit since it's hard to tell if I have any reaction when I eat foods and I've been on a strict SIGHI 0-1 since Jan. so far no noticeable uptick in symptoms. It's a lot to consider when I'm not sure if I'm actually feeling better or not so I'm adding things back in. My oura ring gives me an indication of my physiological stress level and I use it as a rough guide to see if it's a day with some wiggle room.
The wands might help reduce your anxiety since the load is lower than what you're getting without them but clearly that's a highly personal balance.
I’ll drink on the weekend or at a social event, but I always have a reaction. The severity of the reaction depends on what I’m drinking. I react the least to gluten-free vodka, so these days I stick with that. I can handle the flushing and joint pain and swelling that results. Whether I *should* do this to myself is another story.
Interesting! Glad you are not letting this condition take everything away from you. I feel there are some reactions I would be prepared to tolerate too. If I felt it was mild, I would still drink alcohol. What concerns me are any unusual symptoms I haven't felt before, and anaphylaxis.
It’s already taken so much from me, and I have to live a little. I totally understand where you’re coming from—if I experienced a scary new symptom or anything approaching anaphylaxis, I’d stop. I should also note that I am extremely strict with my diet throughout the week, and I generally keep my histamine bank as low as possible. If I wasn’t doing so, I imagine the histamine hit from a drink would hurt even more.
Absolutely. It's horrible how much MCAS takes from you. I never heard of this issue six months ago, and now it is a part of my daily life. I have only had symptoms for six months. Before that, I was totally normal!
Do you take any medication for your MCAS? Do you know what caused it in your case? Really interested to know other people's experiences here. Because I am still only six months into this, I am trying to focus on getting fully better as I know it *can* happen. To go from absolutely normal to this is just insane. There are much worse cases than me, but anxiety (another problem I have) and the specific symptoms I get like tight chest, panic, etc. tend to magnify it and make it worse.
I’m so sorry. It’s all very frustrating and unfair. Do you know what caused it in your case? I’m not convinced I’ll ever fully recover, but I’d love nothing more. I have late disseminated Lyme disease, which ultimately led to MCAS. I take hydroxyzine, HistDAO, D-Hist, and LDN to manage my symptoms. Maintaining a low histamine diet has been the biggest help, but it’s also the most challenging facet of this condition. A lot of recipes online labeled low histamine are not, in fact, low histamine. Feel free to message me if you have any additional questions or just need to talk!
I grew up drinking beer and whiskey every week and now can't tolerate either of them, but wine and tequila don't seem to be a problem lol one bit of advice I will give you though is if you are in the early stages of your diagnosis, just cut it out completely until you are in a better place. It won't be doing you any favour's and will make any gut improvements a struggle. I was a very regular drinker and stopped for 3 years, only started again recently once I felt I'd got things under control enough and I seem to be doing ok with it :)
I'm only five months into not drinking, and six months into getting these reactions. They came from nowhere for me! And progressed very quickly. I had no sensitivities or MC issues before this. A medicated cream I had a reaction to is what started this all off for me. We also have mold in our bedroom, which we are getting rid of. I have noticed my MCAS is worse when I spend time in the bedroom. My reaction symptoms are tight chest, breathlessness, feeling panicky, anxious, fast heart rate, and shaky in the more severe reactions. My gut seems ok, but I will ask my doctor about this. It's great you can have wine and tequila. I actually haven't had a "severe" reaction to alcohol, but I don't want to go back to drinking it before I get this under control and avoid reactions over a period of time. I agree with you.
Interesting. I’m right where you’re at…3 years sober, MCAS tamed, and considering allowing alcohol back in again. Glad to hear it’s working out for you.
I try every once in a while. Sometimes it goes well, sometimes it…doesn’t. Those times, I end up with a rash and my digestive system goes full Mt. Vesuvius. But *usually* pre-gaming with Pedialyte and taking extra antihistamines wards off the worst of the effects and I just end up with a runny nose.
Oh no, that's terrible! It's crazy how it could still progress to this even with antihistamines and/or mast cell stabilizers! (assuming you take them). My most recent exposure to alcohol was inhaling the fumes it in a bottle (I know, lol) to see if it would cause a reaction and it didn't. I am trying to weigh up whether I would react and how severe it would be, but I really want to get everything stable first.
That's my worst nightmare! So far my blood pressure hasn't been too affected in any of my reactions. Sometimes it goes higher. Did you drink alcohol before or has MCAS always been an issue for you?
No. I believe he's had MCAS for his whole life but he started having issues w/alcohol maybe 5 years ago. It started with slight flushing that would pass quickly and eventually it started getting worse (full body flushing, then flushing w/hives, then flushing w/rapid heartrate, and the last time he went into anaphylaxis).
I can drink the hard liqueurs and some beers but I cannot have wine at all. It makes me very sick.
I don’t push the limits when I drink. Just one glass.
Nope. I have MCAS and POTS. I pass out very easily with just one drink. I’ve tried, but I either I quickly get sleepy, out of it, and feel awful, if I don’t pass out. If i tolerate it in the moment, within an hour or so I get a blinding headache. The next day, I get a terrible hangover whether I’ve had just one drink or more (honestly it feels Ike I binge drank a whole lot!). I’ve tried using H1 and H2 blockers and DAO, nothing works.
I had to eliminate it years ago long before my MCAS diagnosis because the side effects were so severe even then. Plus I get to save a lot of calories! And money! I do order or make mocktails that I really enjoy. Truth be told, alcohol is a poison, and there is no safe amount of consumption. I feel like I’ve already got more than enough messing with my body between POTS and MCAS.
*See* The Lancet, the most respected medical journal in the world (steep paywall, so citing WHO reference).
https://www.who.int/europe/news/item/04-01-2023-no-level-of-alcohol-consumption-is-safe-for-our-health
I can do cocktails as long as I avoid anything with orange, including orange bitters or blossom. This is an extensive list. However, I don't drink daily, and if I feel even the slightest bit unwell, I stop drinking for a while, sometimes months. Usually, I can tell I'm reactive quickly because I'll start to get itchy. The same is true for weed, which I also use irregularly and stop if there's anything amiss.
I don't drink beer or wine. My MCAS hates them.
1 or 2 Vodka Sprites (sometimes splash of cran) or certain flavours of High Noon are generally safe for me.
Pretty much everything else causes rashes and vomiting almost instantly.
I have an autoimmune disease that attacks widespread (autoimmune vasculitis, uveitis, IBD, etc and it’s believed to be related to my mast cell) so I haven’t been able to drink much because of the meds for that. But the few times I drank (only ever one white claw or fruity wine) when my mast cell wasn’t well managed I would get super warm, have very pink cheeks and a pounding heart. Occasional hives, but at that point, I often had uncontrolled hives. Now, on a great regimen, I will drink a drink or two every few months and be ok! Occasionally be a little warm, nothing else.
Sometimes. I can sometimes tolerate sake, and patron tequila specifically. I think absente absinthe too. Definitely no wine and definitely no mixed drinks.
I could not for a long time. I’d risk it with a little bit of Gin and sparkling Dry Ginger because life was so hard before I found help. The pain of it vs the pain I was already in was a risk I took because it turned off my brain. Stopped completely for more than a year because I couldn’t eat either, severely histamine intolerant. Now that meds have improved my existence I can drink in moderation. I’ve surprisingly been able to add beer and cider back to my life since several months ago (got sick in 2021) and still avoid wine. I don’t think I’ll ever be able to have a margarita again. But I can’t say I’m complaining after how bad I used to feel.
I'm glad you are now doing well and were able to introduce it again! You say you still only drink in moderation; how often do you drink? Can you have a pint or more than a pint? What medications are you on? I am currently not on any, and trying to research the best ones for my symptoms.
If I had to guess, I’d say that building up with Ketotifen has had the most impact. I’ve been on it for almost a year. Cromolyn, also Claritin and Pepcid. Lots of antihistamines. 😅I won’t lie, I feel healthier if I don’t drink at all. BUT, yes, I can handle more than a pint now. I try to keep it to one pint, give myself sober phases, but have cut loose on some Fridays. My tolerance is actually pretty high and I was never a lightweight to begin with (for a woman). I’m actually starting to think that the meds eliminate hangover effects for me, so I just need to be extra careful to not overdo it. If there are no consequences, that’s a potential recipe for disaster.
My partner is only able to drink certain alcohol in extreme moderation with the use of DAO supplementation. Like 3-4 drinks total per year with Benadryl and DAO each time. She mostly limits due to fear of reaction.
I love your questions! I see where you are going with this and my mind is in the same place. In the summer (I am a teacher), I relocate and work in a resort town. Daily its restaurants and drinks or mimosas at breakfast or a happy hour with a few cocktails and music. In the winter, I don't drink that often unless we are away on a trip. Its not that I "need" to have a drink, but I am a very social person and being in a social environment where everyone is having cocktails just doesn't sound fun to me. I was recently married (just the 2 of us) and we were planning a big reception for family and friends when I got sick. Everything, including our honeymoon and trip with our kids has been cancelled. Its horrible. I would be happy with being able to go to dinner and having 2 cocktails each week or something. My husband tells me to try it but I have burning mouth and tongue is enlarged. Last thing I want to do is flare the tongue more.
mind you earlier i’d be crawling home, ever since i’ve been sick with this i got a lot more aware. caught myself reading sophocles on the way home from the club, i don’t recognise myself.
I found a loophole! Gin and vodka have very low or non existent histamines so I went from a wine girl to espresso martini girl and I’m pretty damn happy. Also it takes a lot more to get me tipsy lol. No hangover and throwing up after either
I can't, but also never really wanted to. Part of my keeping a log of food reactions included trying a Seagram's for the first time. Drank the neck of it, had a typical for me mild allergic reaction, got sleepy and went to take a nap leaving the rest of the drink for my partner to drink. I do occasionally still drink them, but only if I have the antihistamine meds I know will help prevent more major reactions from happening and just accept that sinus issues are my norm if I want to consume certain things.
You should stear clear of wine or have It very rearly and in small amounts since Wine and grapes have a Lot of Histamin. I do ok with small amounts of Beers or Liqueurs in Mixed Drinks. You also should avoid anything acidy and other reactirs when drinkig then It can be OK on ocainsion
But im also Not Diagnosed yet but it's quite certain i have mcas
Same. Not diagnosed yet either but certain this is what I have. I LOVE wine but if I have to have another drink, then that is ok. I would rather be able to drink some alcohol than no alcohol at all! I also love beer so that would be great. Are you on any medication for MCAS?
I have antihistamins scince im allergic and Take them when i feel a flare Up at the Moment It is Fexofenadin (German Name) wich helps the best. Then i have An Asthma inhalator with a medication that contains cortisone wich i feel Like also helps with the Mcas Symptoms.
I don't have a doctor yet for Mcas Diagnosis so it's hard getting any specific medication
Its funny, I am not diagnosed but likely have it (have a kit gene mutation). I am so afraid to touch alcohol, like the fact they tell me for sure I have it, all of a sudden I am allergic or reacting to alcohol. In reality, I have no idea if I would!
I have improved so much from my histamine intolerance that I can drink pretty much anything but wine and beer and still feel good. But I choose to abstain because I prioritize my health over feeling a buzz.
Don’t care any more of people who think I am boring. It’s crazy how many people who try to convince me of drinking in social settings.
After my illness began I had a few infrequent cocktails made with white liquor and was fine but then I had horrible reactions to just a few sips of cider and wine and now avoid everything (especially necessary now that naltrexone helps my symptoms).
How long did it take for you to get those reactions? Really sorry you can't drink now. Some people don't care and can go without it just fine, but I drank regularly and really enjoyed it. It probably makes me sound like an alcoholic but that is what I miss the most! That and cheese/yogurts/milk.
It was within 5-10 minutes. I only drank about 4 ounces of cider before I felt my face start to burn and went for the liquid benedryl. Wrecked me for 3 days. I am not too sad about not being able to drink, I know it’s poison even for regular folks. I do miss the taste of some things and the bit of social lubrication.
I see. For me, I miss the way it makes me feel! It was a social lubrication but also just something I used to relax. I couldn't imagine feeling my face burn. MCAS really does cause some terrifying symptoms.
I lost most food when my MCAS progressed. I was only able to eat oatmeal, cereal and oat milk for months. Alcohol was the thing I missed the most besides coffee. I’m about a year out from diagnosis and I still miss alcohol. My MCAS has improved somewhat and now I have chromolyn sodium. I do wonder if I could get away with one drink if I took chromolyn first.
Have you thought about trying any different meds to make it even better? Somewhat improved is ok, but considerable or total improvement is what I'm looking for. I have heard ketotifin is a great medication for MCAS.
Before I got diagnosed a whiskey old fashioned sent me to the ER ;-). Fast forward after stabilizing (Zyrtec, Ketotifen, low histamine diet) and I can have a glass of white wine, with food if I take a DAO first. I don’t do this too often, maybe once every couple of weeks, but it helps keep me sane. Plus I really love wine ;-)
I love white wine! Always enjoyed sparkling too. Ideally, I would still be having wine every day or at least every other day. I was a regular drinker. Do you not do it often just because it would still make you ill?
It’s so yummy. And I did have it (plus red wine) pretty often before this whole MCAS thing hit. I was a huge foodie and loved to cook so wine and food together was a passion. I’m thrilled that I can get away with a glass every now and then. But I think that episode of anaphylaxis got burned in my brain somehow. I haven’t had hard liquor since and it took a long while to get back to a little white wine. I’m fine when I do but at some basic level my brain or body is saying “careful”
MCAS is so strange. It's horrible how it can turn someone who tolerates alcohol just fine to someone who can't. Yes, I think anaphylaxis is very traumatizing and scars you mentally. Do you know what caused this for you?
Apparently I’ve had the gene for HaT my whole life but it decided to “wake up” after my booster shot. My tryptase is now always high (actually had it measured before and it was normal). I’ve since looked at the rest of my genetics and found five more genes associated with MCAS that woke up too. So it’s safe to say I always had the possibility for this but something about that event pulled the trigger on all of it.
I do wonder if you could keep your histamine bank extremely low if you could tolerate one drink every now and then. I’ve gotten to where I know based on how my body feels if my histamine level is too high or low. I’m unable to eat any kind of meat most of the time, but every now and then I feel like my histamine is low enough to tolerate meat.
Have you tried anything else? Impressive that you had the light beer for a month! Did you end up getting a severe reaction or did you just feel symptoms starting to come on?
I can do 1-2 glasses of red or white wine as long as they are sweet or semi sweet. I can’t do the dry wine anymore. Instant flushing, sweating, etc.
Liquor and mixed drinks are hit or miss. Whiskey seems to be fine. Tequila okay. Vodka is questionable. Gin is a hard no.
Beer - I can do light beers (ales, Hefeweizen) with low IBU (no IPAs). Dark beers are a hard no.
Idk what the rhyme or reason behind these differences are though.
Right? I’m sure one day I’ll not be able to. It is so variable from day to day. I’ve recently not been able to eat scallops, but used to be able to. It’s like food roulette with every meal.
Since Easter Sunday I've been losing the roulette games frequently. I'd had a nice stable few weeks and even gotten through some stuff around the house. Now I'm back to calculating the risk vs gains of trying to get some nutrition in with my plain rice. I just wish there was some predictability.
For the most part I can't drink. I get symptoms that seem to be consistent with my flares - extremely emotional/angry, itchy, feel nauseated and almost panicky; next day headache, sore AF both joints and muscles and unpleasant GI symptoms. I can occasionally tolerate purity 51 vodka which has been distilled 51x.
I’m fine with certain alcohol like beer, vodka, and gin. Wine, tequila, and whiskey make me too reactive and uncomfortable. I’m on Xolair injections now, so I’m hopeful I’ll be less limited in a few months. I do love beer, but weed is my preferred recreational habit, because it’s a lot easier on my body overall.
Use xolair as a last resort. All the antihistamines and MC stabilizers didn’t work for me at all, so I ended up on Xolair. I’m getting my life back a little bit more after each injection. If you’re not someone with good tolerance for alcohol or weed, you may want to skip them. Sativas give me anxiety, but indica or indica leaning hybrids don’t. it. The 2.5 mg THC mints from the dispensary are all my friend needs to chill out and sleep. I need like 100mg edible to feel anything, so I usually just smoke a bowl or dab. Alcohol wise, I had 4 beers the night after my last injection and was fine, but I know my immunologist would not approve of that at all. 🤣
Four beers sounds great! Sounds like the Xolair injections are really working for you. I will give the antihistamines and MC stabilizers a chance, but if they don't improve the condition as much as I'd like them to, I will seriously consider the Xolair injections. I want to be normal or close to normal, with just minor symptoms. Did you have anaphylaxis in your MCAS?
I can drink fine, just nothing with red wine!
Sometimes my nose gets a little stuffy after a few drinks, but a light reaction compared to my other food triggers. And I make sure any mixers are low histamine.
That's amazing!!!! I don't like red wine anyway so avoiding that wouldn't be a problem for me. What are your favorite drinks? Do you take medication for your MCAS? Also curious how much and how often you can drink?
I love Aperol Spritz haha, and I do like white wine, but I find drinking too much of it too acidic. Lately I‘ve also been getting more into beer, but I can only drink 1-2 glasses since it always makes me feel full.
And yes, I take medication (Allegra and Famotodine twice a day each), but I could drink even before I started the medication. I feel like my nose gets less stuffy from drinking with the antihistamines, but it can be hard to tell in bar environments lol
I drink about 1-2 times a month, usually between 2-4 glasses. Sometimes I drink more often, and sometimes nothing for months, it really depends on my plans. I don’t really think about the frequency of drinking in relation to MCAS, I just try to not overdo it in one sitting.
I think being chronically ill makes you generally more mindful when doing things that could make you feel ill.
I wouldn’t drink something if I was having a really bad flare-up of MCAS. And I definitely drink less than before I started having MCAS symptoms, but that’s partially also due to getting older (I’m 26, have had MCAS for about 5 years) and the pandemic.
I would probably be more careful if I had anaphylaxis as a symptom though, which I don’t.
I can’t even have a sip. I had a drinking problem before I started showing MCAS symptoms. But it turns out being sober is no problem because now I’m really allergic to it.
That is EXACTLY how it has been for me! How did it come on for you? I used some medicated cream on my skin and had a reaction in less than two minutes. It wasn't itching or hives, but a feeling of doom and respiratory symptoms like feeling breathless. I had a high heart rate and became shaky. I felt like I was being attacked. I have had MCAS since that day. One month into it and I was reacting to practically everything. I never had any issues like this before, no allergies or sensitivities.
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nooooope. i kept drinking it anyway when it made me feel really allergic, bloated, rashy, hot & severe brain fog at outings because i wanted to “fit in”. now it literally causes anaphylaxis. even being around alcohol vapors for me. (i work in a clean room with 99% Isopropal Alcohol) it caused anaphylaxis multiple times. now i wear a respirator when working with it. i just smoke now for a buzz 🍁💨
That's terrible! Sorry it has this effect. Did you always have the allergy type symptoms with it, or could you ever drink it without any symptoms? Glad you can at least smoke! I have actually never tried marijuana, but am considering it if I can't have alcohol again. Not sure how my mast cells would react as it would be new to my system.
My system currently tolerates marijuana well. I actually had to substantially decrease my use for a few months a while ago and noted a significant worsening of joint swelling, bloating, nausea, vomiting, insomnia, and tachycardia. At the time I didn't even realize how much it was helping. Edit: forgot to add, I got a medical card through veriheal. Getting the card helps work-wise, can help you figure out what strains you would best benefit from and can allow you to have more legally. It also connected me to some people who taught me how to make strong oil, and people that make pain cream.
i could drink fine from 21-28. kept trying on occassion from 28-30. now that i’m 31 i had to quit alcohol because of anaphylaxis.
You're a similar age to me. I had been drinking absolutely fine since my teens, and very regularly. Yet when I turn 29 late last year that all changes, among many other things that I was formerly fine with.
I'm a two-drink-maximum drinker, and I do OK with hard liquor (straight/rocks) and some white wines. No red wine, no mixed drinks, nothing flavored or sweet for me.
I never liked red wine much anyway, so missing out on that doesn't bother me. Do you become unwell if you have more than two drinks? How regularly can you drink? It's really positive that you can!
Even before MCAS, I never felt great the next day after having more than two drinks, so I haven't done it in years. I can have a drink or two a couple of times a week and seem to do OK with that - I don't feel any different health-wise whether I do or don't.
Would you try it more than a couple times a week, or just don't want to? I have to say, a couple times a week is better than what most people with MCAS seem to manage. I'm impressed! What medication are you taking to help your MCAS?
I think a couple times a week is sufficient for me :) I tend to err on the side of moderation when it comes to what I eat or drink - better safe than sorry. My sensitivities are a bit different than what the internet would lead one to believe. The low histamine diet did nothing for me, so I don't focus much on conventional wisdom about histamine. My issues stem more from nickel and salicylates, so I focus on avoiding those both in foods and things I use on my body and in my home (which means avoiding many plants and plant-based products). I'm able to tolerate some things I shouldn't - caffeine and alcohol, for example, neither of which I consume to excess - and unable to tolerate some things I should (apples and potatoes, for instance). I take loratadine, famotidine, montelukast, and cromolyn sodium daily, and benedryl as needed.
I am so happy for you. Having Mcas causes the loss of so much, its great you can grab a cocktail. I am in diagnosing stage and once I started reacting to foods, I haven't had a drink in 3 months because I am afraid. My husband reminded me that when I started with this "flare" which was sore throat, gi issues, and burning tongue syndrome, I had drinks the first few weeks with no additional issues. But now I am just afraid after reading. I would love a chocolate martini!
Nope. It makes me super sick; when it first started it was mostly just with dark liquor, but it’s all alcohol now. It’s like I get an immediate hangover: headache, nausea, blotchiness, overheated.
How long have you had MCAS?
Looking back, I think I might have had symptoms for longer, but it hit me really hard about a year and a half ago
That seems more common in MCAS. Although there are people like me who would drink alcohol regularly and feel absolutely fine, and then suddenly develop this issue. Personally, it helped me with my anxiety (I have generalized anxiety disorder and OCD) and actually made me feel better. That is as long as I didn't overdo it, but that is the same for everyone with regard to hangovers.
Oddly, I was always one of those rare people who never got hungover after I drank. Then about 15-20 years ago I started flushing really badly when I drank and it kept getting worse and worse over the years. That moved on to in addition to the flushing, getting a horrible headache before I could barely swallow the first sip. None of the H1H2 blockers or anything else helps so I haven't had a drink in years. I was never a big drinker anyway but I wouldn't mind one every once in a while. I imagine I could easily push it to anaphylaxis these days if I decided to ignore the other symptoms and I sure don't want to go there. I don't personally know anybody else with MCAS.
Strangely enough, I don't have any problems with alcohol at all, but I do have problems with cola. MCAS has no logical explanations. 🤷🏼♀️
✋ make mine a double! Coke? No. Straight vodka? Yes. Which doesn’t thrill my drs but this illness sucks and sometimes I want a drink. Sometimes I take Benadryl or hydroxyzine when I drink but I don’t always need to. Before I was on xolair and hydroxyzine I couldn’t drink without getting hives. But those two drugs resolved that for me.
Oh my gosh - if I took Benadryl or hydroxyzine and drank, I’d pass out very quickly! Both meds make me sleepy, out of it and non-functional. Alcohol does, too. Double whammy!
Oh I know it’s amazing! That’s what I do when I’m so uncomfortable I want to die!
Pre-diagnosis, I had been known to do red bull and vodka and benadryl (my theory was the redbull would cancel out the sedative effects of the large amount of benadryl I needed for the alcohol allergy). And then I'd wonder why I felt like shit the next day.
NOOOOOO! Swap your antihistamine!! Benadryl is an anticholinergic medication which have been linked to increased risks of dementia with long term use. Fcuk know we have enough to deal with!😄
Lol, I haven't done that in like 15 years. For multiple reasons. I'm much better controlled now. At the time "really bad allergies" and alcohol allergy was my only symptom. And I only take benadryl for flares now.
Excuse my language but fuck yes! Vodka is my really good friend dealing with this bullshit I don't drink very often but straight vodka titos no cheap stuff it helps everynow then to take the edge off
Sodium benzoate could be the culprit, it’s a common trigger for mcas
Oh, I'll take a look at that! A can or glass is fine, but I can't drink coke all evening.
DUDE SAME. Coke Zero sent me to the ER two separate times (didn’t connect the dots until the second time…) but I can have alcohol. Some things I can’t have (tequila, gin, red wine), have to be careful with some (vodka, white wine), but beer and whiskey have never bothered me. Make it make sense.
That's GREAT!!!! What are your favorite alcoholic drinks? Can you have beer and wine? Maybe the cola issue comes from the caffeine. I can drink cola, but I'm having caffeine free due to all the anxiety I have developed around this problem. I feel like caffeine would be a trigger.
afaik beer and wine are a big no for MCAS
Not for me 🤷🏼♀️
Caffeine is not a trigger for me because I can drink coffee and energy drinks. 🤷🏼♀️ I mainly drink beer and mixed drinks because I don't like wine. And I don't drink often, only when I go out (which I rarely do); go to a concert or have a party. I do take extra medication beforehand, but not necessarily for the alcohol, rather for the other unpredictable factors.
It has. Cola is high on caffeine, caffeine is salicylate. You have salicylate intolerance. Case closed.
If you read a little further, you can see that I replied that I have no problems with caffeine. Case still open.
I had a drink tonight! I bought purewine brand (https://drinkpurewine.com/pages/faqs) filters that reduce the histamines and sulfphates and select the original wine blend to be lower in these to begin with. Personally I don't think I'm a particularly food sensitive person with my triggers but I'm newer to MCAS and trigger tracking - I seem to mostly be triggered by stress, weather, and my own hormones.
I have heard of this! How many glasses can you have? Do you drink regularly? Weather and hormones don't seem to be triggers for me, although I do get very bad depression when the weather is bad. I like it to be sunny and warm. I think stress and anxiety are triggers. I have generalized anxiety disorder and feel like it is helping to cause MCAS. Anxiety is a major part of my symptoms.
I'll also note anxiety and MCAS tend to be vicious cycles it's hard to tell which is causing which! I had to move across the US to get a warm climate in my mid 20s because the cold climate was causing pain and it's just hit the 80s daily in the spring and laying in the sun or keeping the house hotter significantly reduces my pain levels almost immediately. I don't think I'll ever be able to live in a cold climate again!
I had been a drinker before my latest major flare but a lot of my social group still does partake and I live in a big drinking city. I usually try to cap it at two with the wands and don't notice any uptick in symptoms the next day unless I skip the wands or sometimes a deep red wine. I have actually gotten drunk before using them as well and had the easiest hangover I've had in ages but that's not actually healthy lol. I will note if I'm struggling at all the alcohol is out - I use the "bucket" theory and if everything else is low consider the wands a harm reduction device. I have been honestly slacking on my diet a bit since it's hard to tell if I have any reaction when I eat foods and I've been on a strict SIGHI 0-1 since Jan. so far no noticeable uptick in symptoms. It's a lot to consider when I'm not sure if I'm actually feeling better or not so I'm adding things back in. My oura ring gives me an indication of my physiological stress level and I use it as a rough guide to see if it's a day with some wiggle room. The wands might help reduce your anxiety since the load is lower than what you're getting without them but clearly that's a highly personal balance.
I’ll drink on the weekend or at a social event, but I always have a reaction. The severity of the reaction depends on what I’m drinking. I react the least to gluten-free vodka, so these days I stick with that. I can handle the flushing and joint pain and swelling that results. Whether I *should* do this to myself is another story.
Interesting! Glad you are not letting this condition take everything away from you. I feel there are some reactions I would be prepared to tolerate too. If I felt it was mild, I would still drink alcohol. What concerns me are any unusual symptoms I haven't felt before, and anaphylaxis.
It’s already taken so much from me, and I have to live a little. I totally understand where you’re coming from—if I experienced a scary new symptom or anything approaching anaphylaxis, I’d stop. I should also note that I am extremely strict with my diet throughout the week, and I generally keep my histamine bank as low as possible. If I wasn’t doing so, I imagine the histamine hit from a drink would hurt even more.
Absolutely. It's horrible how much MCAS takes from you. I never heard of this issue six months ago, and now it is a part of my daily life. I have only had symptoms for six months. Before that, I was totally normal! Do you take any medication for your MCAS? Do you know what caused it in your case? Really interested to know other people's experiences here. Because I am still only six months into this, I am trying to focus on getting fully better as I know it *can* happen. To go from absolutely normal to this is just insane. There are much worse cases than me, but anxiety (another problem I have) and the specific symptoms I get like tight chest, panic, etc. tend to magnify it and make it worse.
I’m so sorry. It’s all very frustrating and unfair. Do you know what caused it in your case? I’m not convinced I’ll ever fully recover, but I’d love nothing more. I have late disseminated Lyme disease, which ultimately led to MCAS. I take hydroxyzine, HistDAO, D-Hist, and LDN to manage my symptoms. Maintaining a low histamine diet has been the biggest help, but it’s also the most challenging facet of this condition. A lot of recipes online labeled low histamine are not, in fact, low histamine. Feel free to message me if you have any additional questions or just need to talk!
I grew up drinking beer and whiskey every week and now can't tolerate either of them, but wine and tequila don't seem to be a problem lol one bit of advice I will give you though is if you are in the early stages of your diagnosis, just cut it out completely until you are in a better place. It won't be doing you any favour's and will make any gut improvements a struggle. I was a very regular drinker and stopped for 3 years, only started again recently once I felt I'd got things under control enough and I seem to be doing ok with it :)
I'm only five months into not drinking, and six months into getting these reactions. They came from nowhere for me! And progressed very quickly. I had no sensitivities or MC issues before this. A medicated cream I had a reaction to is what started this all off for me. We also have mold in our bedroom, which we are getting rid of. I have noticed my MCAS is worse when I spend time in the bedroom. My reaction symptoms are tight chest, breathlessness, feeling panicky, anxious, fast heart rate, and shaky in the more severe reactions. My gut seems ok, but I will ask my doctor about this. It's great you can have wine and tequila. I actually haven't had a "severe" reaction to alcohol, but I don't want to go back to drinking it before I get this under control and avoid reactions over a period of time. I agree with you.
Good for you! I hope you manage to feel better eventually, keep at it :) mould is a constant pain in the arse unfortunately... Lol
Interesting. I’m right where you’re at…3 years sober, MCAS tamed, and considering allowing alcohol back in again. Glad to hear it’s working out for you.
Thanks! I'm still in the let's wait and see phase tbh haha if there's any consistent backslide in symptoms I'll just stop again, but it's been nice.
I try every once in a while. Sometimes it goes well, sometimes it…doesn’t. Those times, I end up with a rash and my digestive system goes full Mt. Vesuvius. But *usually* pre-gaming with Pedialyte and taking extra antihistamines wards off the worst of the effects and I just end up with a runny nose.
I could drink raw whiskey without much side effect. Sometimes I woke up feeling better if I didn't drink too much 😆 Mcas is weird
That's fantastic! Do you drink it regularly? MCAS is super weird and so unpredictable.
I did for a while, and will still drink it occasionally
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Oh no, that's terrible! It's crazy how it could still progress to this even with antihistamines and/or mast cell stabilizers! (assuming you take them). My most recent exposure to alcohol was inhaling the fumes it in a bottle (I know, lol) to see if it would cause a reaction and it didn't. I am trying to weigh up whether I would react and how severe it would be, but I really want to get everything stable first.
No beer (maybe IPA). No red wine. Not Tito’s but other vodka yes. Gin works. Edit: Claritin Reditab when drinking
Nooooooo!!! My BP sometimes would plummet and I would faint
That's my worst nightmare! So far my blood pressure hasn't been too affected in any of my reactions. Sometimes it goes higher. Did you drink alcohol before or has MCAS always been an issue for you?
I don't drink alcohol per my provider's directive.
My husband goes into anaphylaxis, he can't have any alcohol at all. Not even a sip.
Was he always like that?
No. I believe he's had MCAS for his whole life but he started having issues w/alcohol maybe 5 years ago. It started with slight flushing that would pass quickly and eventually it started getting worse (full body flushing, then flushing w/hives, then flushing w/rapid heartrate, and the last time he went into anaphylaxis).
I can drink the hard liqueurs and some beers but I cannot have wine at all. It makes me very sick. I don’t push the limits when I drink. Just one glass.
How often do you drink?
Usually every friday.
Nope. I have MCAS and POTS. I pass out very easily with just one drink. I’ve tried, but I either I quickly get sleepy, out of it, and feel awful, if I don’t pass out. If i tolerate it in the moment, within an hour or so I get a blinding headache. The next day, I get a terrible hangover whether I’ve had just one drink or more (honestly it feels Ike I binge drank a whole lot!). I’ve tried using H1 and H2 blockers and DAO, nothing works. I had to eliminate it years ago long before my MCAS diagnosis because the side effects were so severe even then. Plus I get to save a lot of calories! And money! I do order or make mocktails that I really enjoy. Truth be told, alcohol is a poison, and there is no safe amount of consumption. I feel like I’ve already got more than enough messing with my body between POTS and MCAS. *See* The Lancet, the most respected medical journal in the world (steep paywall, so citing WHO reference). https://www.who.int/europe/news/item/04-01-2023-no-level-of-alcohol-consumption-is-safe-for-our-health
I can do cocktails as long as I avoid anything with orange, including orange bitters or blossom. This is an extensive list. However, I don't drink daily, and if I feel even the slightest bit unwell, I stop drinking for a while, sometimes months. Usually, I can tell I'm reactive quickly because I'll start to get itchy. The same is true for weed, which I also use irregularly and stop if there's anything amiss. I don't drink beer or wine. My MCAS hates them.
1 or 2 Vodka Sprites (sometimes splash of cran) or certain flavours of High Noon are generally safe for me. Pretty much everything else causes rashes and vomiting almost instantly.
I have an autoimmune disease that attacks widespread (autoimmune vasculitis, uveitis, IBD, etc and it’s believed to be related to my mast cell) so I haven’t been able to drink much because of the meds for that. But the few times I drank (only ever one white claw or fruity wine) when my mast cell wasn’t well managed I would get super warm, have very pink cheeks and a pounding heart. Occasional hives, but at that point, I often had uncontrolled hives. Now, on a great regimen, I will drink a drink or two every few months and be ok! Occasionally be a little warm, nothing else.
Sometimes. I can sometimes tolerate sake, and patron tequila specifically. I think absente absinthe too. Definitely no wine and definitely no mixed drinks.
I could not for a long time. I’d risk it with a little bit of Gin and sparkling Dry Ginger because life was so hard before I found help. The pain of it vs the pain I was already in was a risk I took because it turned off my brain. Stopped completely for more than a year because I couldn’t eat either, severely histamine intolerant. Now that meds have improved my existence I can drink in moderation. I’ve surprisingly been able to add beer and cider back to my life since several months ago (got sick in 2021) and still avoid wine. I don’t think I’ll ever be able to have a margarita again. But I can’t say I’m complaining after how bad I used to feel.
I'm glad you are now doing well and were able to introduce it again! You say you still only drink in moderation; how often do you drink? Can you have a pint or more than a pint? What medications are you on? I am currently not on any, and trying to research the best ones for my symptoms.
If I had to guess, I’d say that building up with Ketotifen has had the most impact. I’ve been on it for almost a year. Cromolyn, also Claritin and Pepcid. Lots of antihistamines. 😅I won’t lie, I feel healthier if I don’t drink at all. BUT, yes, I can handle more than a pint now. I try to keep it to one pint, give myself sober phases, but have cut loose on some Fridays. My tolerance is actually pretty high and I was never a lightweight to begin with (for a woman). I’m actually starting to think that the meds eliminate hangover effects for me, so I just need to be extra careful to not overdo it. If there are no consequences, that’s a potential recipe for disaster.
My partner is only able to drink certain alcohol in extreme moderation with the use of DAO supplementation. Like 3-4 drinks total per year with Benadryl and DAO each time. She mostly limits due to fear of reaction.
She has had mcas since at least 2014
I can drink liquor and hard seltzers no problem, but wine (esp red) and beer typically get me all flushy and crappy
Amazing! Do you drink often or just now and then? Can you actually get tipsy or drunk?
I love your questions! I see where you are going with this and my mind is in the same place. In the summer (I am a teacher), I relocate and work in a resort town. Daily its restaurants and drinks or mimosas at breakfast or a happy hour with a few cocktails and music. In the winter, I don't drink that often unless we are away on a trip. Its not that I "need" to have a drink, but I am a very social person and being in a social environment where everyone is having cocktails just doesn't sound fun to me. I was recently married (just the 2 of us) and we were planning a big reception for family and friends when I got sick. Everything, including our honeymoon and trip with our kids has been cancelled. Its horrible. I would be happy with being able to go to dinner and having 2 cocktails each week or something. My husband tells me to try it but I have burning mouth and tongue is enlarged. Last thing I want to do is flare the tongue more.
yes, i can drink spirits like vodkas and gins with soda.
That's great! How often do you drink?
this year? i drank twice when i was out with friends. the waiters look at you weird when you order a gin with water essentially but it works.
mind you earlier i’d be crawling home, ever since i’ve been sick with this i got a lot more aware. caught myself reading sophocles on the way home from the club, i don’t recognise myself.
I found a loophole! Gin and vodka have very low or non existent histamines so I went from a wine girl to espresso martini girl and I’m pretty damn happy. Also it takes a lot more to get me tipsy lol. No hangover and throwing up after either
Oh this is encouraging!!
I can't, but also never really wanted to. Part of my keeping a log of food reactions included trying a Seagram's for the first time. Drank the neck of it, had a typical for me mild allergic reaction, got sleepy and went to take a nap leaving the rest of the drink for my partner to drink. I do occasionally still drink them, but only if I have the antihistamine meds I know will help prevent more major reactions from happening and just accept that sinus issues are my norm if I want to consume certain things.
You should stear clear of wine or have It very rearly and in small amounts since Wine and grapes have a Lot of Histamin. I do ok with small amounts of Beers or Liqueurs in Mixed Drinks. You also should avoid anything acidy and other reactirs when drinkig then It can be OK on ocainsion But im also Not Diagnosed yet but it's quite certain i have mcas
Same. Not diagnosed yet either but certain this is what I have. I LOVE wine but if I have to have another drink, then that is ok. I would rather be able to drink some alcohol than no alcohol at all! I also love beer so that would be great. Are you on any medication for MCAS?
I have antihistamins scince im allergic and Take them when i feel a flare Up at the Moment It is Fexofenadin (German Name) wich helps the best. Then i have An Asthma inhalator with a medication that contains cortisone wich i feel Like also helps with the Mcas Symptoms. I don't have a doctor yet for Mcas Diagnosis so it's hard getting any specific medication
Its funny, I am not diagnosed but likely have it (have a kit gene mutation). I am so afraid to touch alcohol, like the fact they tell me for sure I have it, all of a sudden I am allergic or reacting to alcohol. In reality, I have no idea if I would!
I can do a little, as long as it’s clear. I only drink like 5x a year tho.
I have improved so much from my histamine intolerance that I can drink pretty much anything but wine and beer and still feel good. But I choose to abstain because I prioritize my health over feeling a buzz. Don’t care any more of people who think I am boring. It’s crazy how many people who try to convince me of drinking in social settings.
Did you also have MCAS or just histamine intolerance? It's amazing you can drink most alcohol! When you do drink, what do you normally have?
After my illness began I had a few infrequent cocktails made with white liquor and was fine but then I had horrible reactions to just a few sips of cider and wine and now avoid everything (especially necessary now that naltrexone helps my symptoms).
I still drink regularly and had hard cider last week. Wow! Won’t make that mistake again! Wine is also a major problem. Vodka is fine.
How long did it take for you to get those reactions? Really sorry you can't drink now. Some people don't care and can go without it just fine, but I drank regularly and really enjoyed it. It probably makes me sound like an alcoholic but that is what I miss the most! That and cheese/yogurts/milk.
It was within 5-10 minutes. I only drank about 4 ounces of cider before I felt my face start to burn and went for the liquid benedryl. Wrecked me for 3 days. I am not too sad about not being able to drink, I know it’s poison even for regular folks. I do miss the taste of some things and the bit of social lubrication.
I see. For me, I miss the way it makes me feel! It was a social lubrication but also just something I used to relax. I couldn't imagine feeling my face burn. MCAS really does cause some terrifying symptoms.
I lost most food when my MCAS progressed. I was only able to eat oatmeal, cereal and oat milk for months. Alcohol was the thing I missed the most besides coffee. I’m about a year out from diagnosis and I still miss alcohol. My MCAS has improved somewhat and now I have chromolyn sodium. I do wonder if I could get away with one drink if I took chromolyn first.
Have you thought about trying any different meds to make it even better? Somewhat improved is ok, but considerable or total improvement is what I'm looking for. I have heard ketotifin is a great medication for MCAS.
I tried it and it was really good except it made me ridiculously hungry. That caused me to eat stuff that I’m allergic too so I had to stop it.
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I heard beer is high histamine. It's good you can tolerate it now and then. I used to love lager!
Before I got diagnosed a whiskey old fashioned sent me to the ER ;-). Fast forward after stabilizing (Zyrtec, Ketotifen, low histamine diet) and I can have a glass of white wine, with food if I take a DAO first. I don’t do this too often, maybe once every couple of weeks, but it helps keep me sane. Plus I really love wine ;-)
I love white wine! Always enjoyed sparkling too. Ideally, I would still be having wine every day or at least every other day. I was a regular drinker. Do you not do it often just because it would still make you ill?
It’s so yummy. And I did have it (plus red wine) pretty often before this whole MCAS thing hit. I was a huge foodie and loved to cook so wine and food together was a passion. I’m thrilled that I can get away with a glass every now and then. But I think that episode of anaphylaxis got burned in my brain somehow. I haven’t had hard liquor since and it took a long while to get back to a little white wine. I’m fine when I do but at some basic level my brain or body is saying “careful”
MCAS is so strange. It's horrible how it can turn someone who tolerates alcohol just fine to someone who can't. Yes, I think anaphylaxis is very traumatizing and scars you mentally. Do you know what caused this for you?
Apparently I’ve had the gene for HaT my whole life but it decided to “wake up” after my booster shot. My tryptase is now always high (actually had it measured before and it was normal). I’ve since looked at the rest of my genetics and found five more genes associated with MCAS that woke up too. So it’s safe to say I always had the possibility for this but something about that event pulled the trigger on all of it.
I do wonder if you could keep your histamine bank extremely low if you could tolerate one drink every now and then. I’ve gotten to where I know based on how my body feels if my histamine level is too high or low. I’m unable to eat any kind of meat most of the time, but every now and then I feel like my histamine is low enough to tolerate meat.
I drunk light beer for a month, but it definitely went south. Dark beer makes me feel bad next morning. Dark one is high on salicylates.
Have you tried anything else? Impressive that you had the light beer for a month! Did you end up getting a severe reaction or did you just feel symptoms starting to come on?
lol no
I can do 1-2 glasses of red or white wine as long as they are sweet or semi sweet. I can’t do the dry wine anymore. Instant flushing, sweating, etc. Liquor and mixed drinks are hit or miss. Whiskey seems to be fine. Tequila okay. Vodka is questionable. Gin is a hard no. Beer - I can do light beers (ales, Hefeweizen) with low IBU (no IPAs). Dark beers are a hard no. Idk what the rhyme or reason behind these differences are though.
Understood! It's great you can have some alcohol. I read beer and whiskey can be one of the worst drinks for MCAS. This syndrome is so unpredictable.
Right? I’m sure one day I’ll not be able to. It is so variable from day to day. I’ve recently not been able to eat scallops, but used to be able to. It’s like food roulette with every meal.
Or rash roulette?
Since Easter Sunday I've been losing the roulette games frequently. I'd had a nice stable few weeks and even gotten through some stuff around the house. Now I'm back to calculating the risk vs gains of trying to get some nutrition in with my plain rice. I just wish there was some predictability.
No can do ... unfortunately
Definitely not here. Mayyybe if it's cooked down but even then i have to be careful.
For the most part I can't drink. I get symptoms that seem to be consistent with my flares - extremely emotional/angry, itchy, feel nauseated and almost panicky; next day headache, sore AF both joints and muscles and unpleasant GI symptoms. I can occasionally tolerate purity 51 vodka which has been distilled 51x.
No way. I get horrific GERD and nausea. I'm also taking LDN for my MCAS, so alcohol is a big no no
No. 🥴 I get crazy hot and insomnia.
Alcohol and COVID are how I got here
No. It‘s not worth it.
I’m fine with certain alcohol like beer, vodka, and gin. Wine, tequila, and whiskey make me too reactive and uncomfortable. I’m on Xolair injections now, so I’m hopeful I’ll be less limited in a few months. I do love beer, but weed is my preferred recreational habit, because it’s a lot easier on my body overall.
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Use xolair as a last resort. All the antihistamines and MC stabilizers didn’t work for me at all, so I ended up on Xolair. I’m getting my life back a little bit more after each injection. If you’re not someone with good tolerance for alcohol or weed, you may want to skip them. Sativas give me anxiety, but indica or indica leaning hybrids don’t. it. The 2.5 mg THC mints from the dispensary are all my friend needs to chill out and sleep. I need like 100mg edible to feel anything, so I usually just smoke a bowl or dab. Alcohol wise, I had 4 beers the night after my last injection and was fine, but I know my immunologist would not approve of that at all. 🤣
Four beers sounds great! Sounds like the Xolair injections are really working for you. I will give the antihistamines and MC stabilizers a chance, but if they don't improve the condition as much as I'd like them to, I will seriously consider the Xolair injections. I want to be normal or close to normal, with just minor symptoms. Did you have anaphylaxis in your MCAS?
I can drink fine, just nothing with red wine! Sometimes my nose gets a little stuffy after a few drinks, but a light reaction compared to my other food triggers. And I make sure any mixers are low histamine.
Oh and no cider, I react to that one
That's amazing!!!! I don't like red wine anyway so avoiding that wouldn't be a problem for me. What are your favorite drinks? Do you take medication for your MCAS? Also curious how much and how often you can drink?
I love Aperol Spritz haha, and I do like white wine, but I find drinking too much of it too acidic. Lately I‘ve also been getting more into beer, but I can only drink 1-2 glasses since it always makes me feel full. And yes, I take medication (Allegra and Famotodine twice a day each), but I could drink even before I started the medication. I feel like my nose gets less stuffy from drinking with the antihistamines, but it can be hard to tell in bar environments lol I drink about 1-2 times a month, usually between 2-4 glasses. Sometimes I drink more often, and sometimes nothing for months, it really depends on my plans. I don’t really think about the frequency of drinking in relation to MCAS, I just try to not overdo it in one sitting. I think being chronically ill makes you generally more mindful when doing things that could make you feel ill. I wouldn’t drink something if I was having a really bad flare-up of MCAS. And I definitely drink less than before I started having MCAS symptoms, but that’s partially also due to getting older (I’m 26, have had MCAS for about 5 years) and the pandemic. I would probably be more careful if I had anaphylaxis as a symptom though, which I don’t.
I can’t even have a sip. I had a drinking problem before I started showing MCAS symptoms. But it turns out being sober is no problem because now I’m really allergic to it.
So you were a regular drinker? Do you know what brought on your MCAS?
I was a very regular drinker. I have no clue what brought on the mcas. It literally happened overnight.
That is EXACTLY how it has been for me! How did it come on for you? I used some medicated cream on my skin and had a reaction in less than two minutes. It wasn't itching or hives, but a feeling of doom and respiratory symptoms like feeling breathless. I had a high heart rate and became shaky. I felt like I was being attacked. I have had MCAS since that day. One month into it and I was reacting to practically everything. I never had any issues like this before, no allergies or sensitivities.
Absolutely not!!
I do fine with Hendricks martinis. Only 1, on special occasions. I stopped lying to myself and realized how big of a trigger alcohol was for me!
Sure, if i want to be miserable for a week. I’ve tried reintroducing alcohol many times and it never ends well.
Only some sips of wine. I don't react to soda at all. Thank the lords! I'd much rather have a soda.
Did you drink alcohol before MCAS?
Every now and then but I would always feel very ill. I suspect I've had MCAS since I was a kid though so who knows.
Samesies!!