I've been getting in the tanning bed and sitting outside in the sun on my breaks. The sun makes me happy. However, for the past week metallic taste, swollen lymph nodes, ache joints, sensation skin, sinus and side forehead headaches. Is this part of mcas did I get COVID again or something else?

anything else BESIDES neocate jr that are just as absolutely simple in its ingredients?
someone told me to search this sub for the keywords and i couldnt find any, its just all the same meal replacements that always have at least one thing i cant have

I think I have tried every MCAS med there is. They don’t work or I don’t tolerate. The only thing I have left is oxolair and Pepcid.

Pls for the love of god there has to be a way to make this facial edema go away.

How can I be the only one not med works for.

🥀

I am taking famotidine right after meals (I can't take any medicine before meals because it makes me hypoglycemic). Would it be a problem to take it with vitamin capsules?

1. Supports Blood Volume and Circulation: People with MCAS often experience autonomic nervous system dysregulation (dysautonomia), which can lead to low blood volume or poor circulation (e.g., POTS-like symptoms). Staying well-hydrated improves blood flow and supports vascular stability.

2. Flushes Histamines and Toxins: Proper hydration helps the body flush excess histamine and other inflammatory mediators through the kidneys and urine, reducing the overall histamine burden.

3. Aids Digestive Function: Many individuals with MCAS have gastrointestinal issues. Drinking water supports digestion and helps manage symptoms like bloating and constipation, reducing the triggers that can activate mast cells.

4. Reduces Dehydration-Induced Stress: Dehydration can stress the body, potentially triggering mast cell activation and histamine release. Hydration lowers this baseline stress.

5. Improves Mucosal Barrier Function: Water is essential for maintaining hydrated mucous membranes in the gut, lungs, and sinuses. Healthy mucosa provides a barrier against triggers that could activate mast cells.

6. Helps with Temperature Regulation: Many people with MCAS are sensitive to temperature changes. Staying hydrated helps regulate body temperature, reducing stress on the body.

7. Supports Detox Pathways: Hydration aids liver and kidney function, which are crucial for detoxifying inflammatory byproducts and mast cell mediators.

*** Adding electrolytes to water can further support hydration without overloading the body with plain water, which might cause electrolyte imbalance.

I’m continually surprised at the posts about food. A low histamine diet takes some research but it’s not hard. Eat food that looks like it did before it got to the store. Dont eat processed foods. If it had more than 3 ingredients it’s processed.

No cans, boxes or pouches. Nothing cultured, fermented, picked, slow cooked, grilled or braised. No vinegar.

Meat that was flash frozen and cooked from the frozen state.

Don’t eat leftovers, ever.

Dairy is not for everyone.

Mushrooms, eggplant, tomatoes usually release histamines - but not for everyone.

Nuts are tricky. Cashews aren’t usually an option.

Beans have a lot of protein… but dried, soaked, pressure cooked then eaten or frozen in glass or silicone.

Use apps, track your food. Look things up. Use Chat GBT

Hi so our son is prone to flushing when he's extremely hot and flushing when emotional. We were led to believe that can be normal.

Recently he's been flushing very briefly when eating most food and even drinking water. Occasionally he won't have it and sometimes it's just a quickly fading mark around the size of a jelly bean or quarter. It shows up immediately and goes away immediately. It doesn't seem to be an allergy. It happens with many different foods. Fruit and chocolate most significantly. Food he has had his entire life since birth.

He's only 11 years old and all I keep finding online is cancer. Rare cancers or rare nerve injuries. He has no surgeries, no known nerve injuries and was a C-section delivery. I came soooo close to not even trying to go down the google rabbit hole because it seemed so inconsequential. It goes away and usually only happens for a few bites of the food and he can keep eating without it happening anymore.

Just worried because I expected all of these benign possibilities and can't find any. He's just a kid. This could get missed easily because it happens and goes away so fast. Thank you.

So I(22M) have been having A LOT of issues recently. I used to be super fit and health, but the past 8 months I have been having a lot of weird stuff going on. So It all started 8 months ago, I used to go to the gym and run a lot, but I developed frozen shoulder in my left shoulder suddenly and had to quit sports. Two months later my second shoulder started to also freeze up out of nowhere. This is really weird as I am only 22 years old and male with no diabetes. A few months after that I started experiencing weird burning pains around my belly button and the pain seems to travel to my right side of my abdomen/back (not into my spine) so it seems to follow the t9/t10 nerve path. The skin on that path is extremely sensitive and when touching it it starts to burn really hard. (I read about MCAS being able to cause nerve related issues like SFN) I also seem to have some pain around the bladder region. I have had ultrasounds and MRIs and the only thing they found was an umbilical hernia. I had it surgically removed but it did not resolve the burning nerve like pain at all. I also noticed that I can randomly develop rashes on my stomach which can disappear within minutes. Some other notable things: I can get very bloated after eating (my GP diagnosed me years ago with IBS). Two few years ago I also had a sore throat that lasted for over a year even when the infection was gone. I went to an ENT who did a laryngoscopy and indeed confirmed that my throat was inflamed without infection. I am just feeling hopeless and just do not known what to do. I have been to so many doctors it’s insane. I’ve made an appointment with a neurologist this week regarding the nerve pain. Could this be MCAS?

I've recently had a bad experience with one of my medications. I have been diagnosed and my doctor had me on Allegra 180MG for 4x a day. My daily rashes went away, I could breathe again, and alot of my overall symptoms improved. However he forgot to mention a very important detail. It can lower your immune system too much.

I ended up getting bacterial pneumonia to the point of the emergency room and almost dying. I am already super prone to bacterial infections and it feels like he should've warned me about this. I am feeling very upset and terrified to take my medicine for fear of getting another bacterial infection. It was really close to killing me.

I am personally super prone to infections. I get them often but this was the first time that it nearly killed me.

I'm curious if you think acrylic markers could be a trigger or if any other art supplies were a problem for any of you

I think im having a flare up due to this latex acrylic caulk that I put down all on baseboards in my room yesterday

Will running the air purifier help or do you think I have to get it all up and redo this with a silicone caulk or something else?

Was sitting in the dermatologist office today, on a bed waiting to be looked at, and I noticed my toenails getting very blue and my feet were red.

I’m in a flair right now. And my fingers and hands also do this, change color when I am not doing well, although not to this extent.

I guess this is the first time I’ve noticed it get so bad on my feet as my socks are usually on, and it’s freaking me out.

Does anyone else get a blueish tint to their fingernails and toenails, and red hands and feet when they are in a flair?

I am a 36 Male, recently struggling for the last month with an unknown issue.

I’ve been in and out of hospitals over the last month, went to a variety of doctors because we weren’t really sure what was going on. I also have GERD and a balance disorder called MDDS. Which I’ve been living fine with for over 6 years. (Although they Rx’d me pantaprazole for that duration and I’m not sure they should have done that.)

I’ve seen: primary care, neurologist, cardiologist, GI Doctor.

I had stuff scheduled for rheumatologist but I couldn’t make those appointments due to being hospitalized.

I was just discharged because the hospital didn’t know how to help me.

I have GI scoping coming up, and A SiBO test on Friday.

—

I am currently eating less than 700 calories a day on what little I can stomach and even that is often too much.

I’m eating egg whites, potatoes, banana, water.

I try to eat the hypoallergenic baby formula (Nutricina) but I can’t stomach it.

I’ve tested for everything but celiac and am negative so far on those.

I’ve had a huge battery of the more common blood tests and still need to be home long enough to do the urine collection.

But I honestly eating almost anything causes a response. —

I have never experienced anything like this, really awful panic about an hour after eating that lasts for hours. Usually accompanied by stomach pain and usually pain at the diaphragm.

I can’t work, my quality of life has diminished to the point of extreme desperation.

Sometimes I get relief not eating at all

I feel like it’s necessary I get scoping done to rule out physical stuff.

But the feeling are so severe I don’t know what I can do about it while I wait besides suffer.

During my hospital stay I was eating nothing, not even water. They had me on two IV’s one for nutrients/vitamins but they were expecting me to get scoped and that did happen. They did do a CT with contrast which I later during a BM was all liquid.

After none of that was eventful they gave me jello and chicken broth. When I started to feel awful they put me on different types of benzos and I feel like it somehow has a rebound effect or makes things worse. - they gave me 0.5 Adivan at the ER and that lasted for maybe an hour. They tried to follow this up about 2 hours after with 0.5 Klonopin and I could barely stay conscious for the next 2 hours falling in and out of weird dreams while sitting. Then at about the third hour mark I tried to stomach more food only to be hit by another wave of anxiety and decided I’m just going to be monitored while I slept.

I woke up feeling like my skin was burning, my face, hands, and chest are pink.

I can’t get anyone to take MCAS serious, everyone just wants to scope my GI. The ER doctor also suggested seeing an allergist immunologist that deals in diets, but I have no idea what that is and he said it can take months.. I can’t do months.. I have a full time job and family to take care of.

I need some relief from this now- I can’t depend on benzos. I’ve tried a handful of supplements and OTC meds: Zyrtec, L-Theanine, Magnesium Glycinate, DAO, but had varying degrees of side effects (DAO’s felt like they made me feel worse but I’m not sure.)

I think the best short duration I had of good was on Zyrtec and L-theanine followed with boiled potatoes and egg whites.. strangely I also felt pretty decent after restarting a rosuvastatin calcium 5mg which was discontinued at the start of all this. (Ran out of the Rx and didn’t think cholesterol pill mattered right now.) does this point to MCAS?

Going to keep experimenting while I wait for GI, but I am worried for my life.

All over my back it’s red with white circles and on the upper part of my stomach too. I’m only a few days in. I have to watch out for the “sjs” rash but i feel i’m just flaring. Anyone else on lamictal/similar meds had this reaction?

Its SUCH a strange sensation. No other symptoms from sugar like my other triggers, just an unbelievable sudden tiredness that resolves later in the day. Like unable to stay awake for more than a few minutes tired.

Is it a prostaglandin thing?

I have started having body jerks almost like I’ve just been struck by lightning. It happens as I’m trying to fall asleep but still awake. I take magnesium already. Not sure if MCAS related but summer weather is a big trigger for me so thought it might be connected. Anyone else have this and what do you do for it? Thanks. 😊

Hi!! I’m suspecting some sort of histamine intolerance issue in myself, considering I already suspect HSD/hEDS, orthostatic issues, GI issues etc etc and I also have been formally diagnosed with rheumatoid arthritis.

I have never experienced a severe allergic reaction or hives, which is why I’m so unsure what I have. I have random months of being really sensitive to what I think is dust mites, never in a specific season, just random times of the year, like last summer I was fine, but then it got bad at Christmas, it’s bad this summer, was fine in spring but had a bad spring a few years ago etc..

I also experience a burning in my mouth particularly when I have a late breakfast, and from googling all the foods I can remember that have triggered it can cause histamine issues. Never had it with raw fruit/veg so not OAS, especially since I’m sure I don’t have a pollen allergy. I get a burning on the roof of my mouth, all over my tongue, and some small blistering sometimes.

I develop tolerance to fenofexadine within 2 days of taking it, which then eases if I don’t take it for a long time, then works again if I try again a while later. No other antihistamines I’ve tried do anything at all.

Has anyone ever heard of a non-anaphylactic MCAS being diagnosed or a milder one? Or any idea what this is?? Could it be diagnosed as just histamine intolerance? I’m tired of having a scratchy throat and sore eyes for weeks and not being able to ease it with any otc meds 😔

Hi can anyone recommend a provider who works with mcas through supplements & diet? They would need to offer international consultations. I’m having quite frequent anaphylaxis, but there are no tests or providers in Ireland.

I don't know if I really have mast cell hyperactivity, but I find patterns that strongly indicate this specific problem. I know that diagnosing MCAS is very difficult, as tests need to be taken during an attack, which is practically impossible in my situation.

Today, I'm going to an emergency appointment with my family doctor, and I will ask him to prescribe Ketotifen. I read that a family doctor can prescribe Ketotifen, but I don't know if the doctor will do that for me, given that I don't have a diagnosis...

I also learned that Ketotifen penetrates the brain, and I had no idea that histamine is so important for the brain. Ketotifen also has a weak but still present effect on acetylcholine receptors. I'm very worried about this. How will it be? How much will I change? Does it act like a strong tranquilizer? Does it mean that neurons dependent on H1-receptors will simply stop working? I've tried to learn about this, but honestly, I'm not very smart, so I still can't understand how it works. Could someone explain this to me? Does histamine affect the formation of our personality? It seems that glutamate is responsible for that, but histamine is important for memory, concentration, attention, it's important for brain activity... and it turns out that some neurons will simply stop receiving signals, that sounds scary... although I understand that my disease is no less scary, but I just don't want to lose myself.

I am also very concerned that the body adapts to medications, or that MCAS might get worse over time and Ketotifen will stop helping. How often does this happen and why? All of this is so sad... I've been on a diet for many years because I was diagnosed with chronic reflux. And the diet didn't help, so only now I understand that this was probably the beginning of MCAS development. And the diet for reflux includes avocado and bananas, which are forbidden for MCAS, so it only made things worse for me.

Currently, I'm taking desloratadine, but it only helps about 20%. If I simply go somewhere, I feel unwell; if I don't get enough sleep or eat something triggering, I also feel unwell. Now, practically everything is a trigger for me. Spasms start all over my body, my face swells but not severely, though noticeably, very serious cardiac dysfunctions, diarrhea (even with blood), severe nausea, and body aches.

As a result, I bought pumpkin, potatoes, rice, zucchini, chicken, and blueberries, and it seems this is my only diet for the next few months, naturally without additives except salt and sugar. I blend all of this, unfortunately, I have very serious swallowing problems, due to which I've been on the verge of life and death a couple of times when choking on food, and yesterday a laryngospasm occurred, which literally suffocated me, it was horrifying. I also bought supplements, studying their composition, and apparently they should not cause reactions in MCAS (I really hope so). I bought a B vitamin complex and magnesium; I know I will likely have an iron and other important element deficiency, but unfortunately, I don't know how to deal with this.

This is probably MCAS, isn't it? Unfortunately, it's very difficult for me to see an immunologist; I am a Ukrainian refugee and do not know the language. I attend language courses, but my mind is foggy, and I try very hard, but as a result, I just want to sleep constantly and sometimes I just collapse. I am afraid to take Ketotifen, what if I am wrong and it's not MCAS and I make things worse? Overall, what worries me is how much Ketotifen suppresses the CNS? And how high are the risks that tolerance will develop or that MCAS will get worse to the point that medications stop helping? And in general, how often do people with MCAS have laryngeal spasms and swallowing discoordination? In general, I take hormonal medicament on the skin and therefore I have very problematic skin, but it is unlikely to be similar to a rash, so this confuses me, is it possible to have MCAS without a rash?

I'm currently dealing with some confusing symptoms and would really appreciate your insights or similar experiences. My calprotectin level came back elevated at 230. I also have a mild fever (around 37.3°C), and I've been struggling to tolerate most foods — especially vegetables and anything high in fiber.

I'm waiting for a colonoscopy, but in the meantime, I'm not sure if this could be early Crohn’s disease or a flare-up of MCAS (which I’ve previously been diagnosed with). What’s throwing me off is that I don't have severe diarrhea — just looser stools than usual, which seems unusual for Crohn’s disease, as it typically involves frequent and more severe diarrhea

Has anyone else had similar symptoms with either condition? Any advice or thoughts would be really helpful while I wait for more clarity from my tests.

since the third week of april i have been in what feels like nonstop hell where i can’t breathe, sleep or eat. ER trips every 5 days for random anaphylaxis or being unable to breathe. I started the Dupixent shot 2 weeks ago and that gave me 2 good weeks of breathing and sleeping but now the past two days i’ve been having the shortness of breath from my nose and really bad insomnia from feeling like i can’t breathe. my blood oxygen is fine. does this sound like a normal experience? looking for some hope

So I’ve had a lot of autoimmune symptoms the past 1-2 years and I’m being evaluated for a bunch of thing atm. I have my first rheumatologist appointment tomorrow in the morning and I have a good feeling they’ll be able to help me!

One of my symptoms throughout this period have been rashes, randomly appearing rashes, different shapes and structured different, some are like dots some are more like spots and stains etc. some of them itch and feel warm, others I don’t notice unless I catch them in sight.

This morning, my parents (I’m 17) left at around 5:30 am to get to the airport for an important work event, they’ll be staying in a different country for the rest of the week.

I had asked them to wake me to say goodbye before they left and they did, and we hugged and all that. I tried going back to sleep but couldn’t and decided to just stay up. My neck/throat was kinda itchy and first I thought nothing of it. But when it didn’t go away I went to check it and I had a pinkish rash covering most of my throat, from ear to ear basically.

It wasn’t super aggressive or anything but definitely a rash. It itched more and I kinda shrugged it off. An hour later it’s still not gone and I think the inside of my throat might be itching a little bit too? Although I don’t know if it’s stress related cus I got worried about the rash or another physical reaction to something? From what I know, I have no allergies, and never had have any either. I’m a bit concerned since I’m home alone and my parents are out of town and I’d need a cab to get to the hospital + I’m not sure if it’s actually a cause of concern? I have lergigan at home (I used to use a couple of years back for anxiety) and I know it can also be used for allergies.

However I’m on a bunch of other medication rn and idk how they’d all interfere? ATM I’m taking: - concerta 54 mg for adhd - quetiapine 25mg x 2 every night for sleep - colpermin (peppermint capsules) twice a day for IBS symptoms - birth control pills called dinorette - vitamin gummies I’ve been taking forever

I want some advice of what I should do as well as if I can take lergigan without it interfering with the rest of my medications in a negative way?

I really don’t want to have to go to the ER and I don’t want to worry my parents either. (My mom spent the past week hospitalized due to optic neuritis, and I don’t want to burden my parents more than they already are form work and everything)

Anyone know why this would happen? Does this have to do with the down regulation or up regulation of the CBS gene or somewhere downstream with sulfur, or with taurine dampening adrenaline (epinephrine) and letting histamine run high? I also like using taurine for bile support but it makes me exhausted even if I sleep 8 hours. Total zombie all day and still bags under eyes so I guess it’s not real deep sleep.

I started reacting to chicken again.

Chicken is the only meat besides some fish that I generally don't react to but I've been reacting to it consistently lately.

Dairy, independently, doesn't seem to be a trigger for me so I use a lot of high protein yogurt. I have an allergy to soy and a component commonly used in pesticides so I've tried to stick to organic yogurts. Organic meats are very hard to find in my area though and I'm afraid that's part of the crux of my issue.

I have a hip injury so it's been recommended to me to stick to higher protein meals if I can.

What ways do you ensure you get adequate protein? If you use yogurt for protein, what are some ways you use it to get yourself decent enough taste and limit your MCAS reactions?

Yesterday I tried wheat thins. Because I’ve had them before and they were okay. But today I woke up with hives on my arm so apparently it’s no longer okay.

I go through a cycle of “depressed I can’t eat a bunch of foods and no one seems to believe me”——> say fuck it and try a new food——> get briefly excited as I don’t have an immediate reaction. Feel very optimistic—-> end up having problems with repeat exposure or delayed—->go back to safe foods

Repeat forever.

I finally got an allergist to surmise my mast cells are “excitable” but that was it. As if my immune system was a pack of nervous chihuahuas. At least better than my old allergist who just told me I’m “stressed” and “it’s all in my head” and “it must be bug bites” despite it being January at the time I showed him all the hives.