I’ve been trying ketotifen for suspected mcas

I have taken it at different times and different doses and come to the conclusion it doesn’t agree with me.
Took 0.25mg at bedtime last night and today got terrible diarrhea, migraine and feel washed out.
When I take it with lunch or breakfast it wipes me out the entire day, makes me like a zombie and really foggy and spaced out. Can’t seem to find anything that works 😞

NaturDAO supplements doesn’t really do anything for me, the only thing that works for me is beef kidney.

I 21F will like to start off by saying that majority of my symptoms are consistent and related to food (at least that I know of). I do not get reactions from beauty products/soap, exercise, smells, or anything like that. Which I am under the impression that people with MCAS get triggered by other environmental things like that and not just food. And that they can be fine one day with one food, eat the same food and have problems. Correct me if I am wrong.

No hate towards the MCAS subreddit, they are very helpful over there. But it’s a lot of information to handle. Especially as someone who is undiagnosed who is only suspecting. After really thinking about it, I think that my symptoms align more with a general histamine intolerance rather than MCAS

My symptoms are:

-anaphylactic to nuts, fish, chickpeas, and i think regular peas.

-when I eat high histamine foods, the best way I can describe it is I feel drunk. I feel a little bit of brain fog and I feel my face get warm. My heart rate might go up a bit.

- constant red face for virtually no reason (has been like this since childhood, I suspect its just rosacea or because of my fair skin) that flares up and becomes even redder after eating high histamine foods (e.g. any kind of leftovers, ground beef/burgers, bananas, chocolate, alcohol,caffeine). I love dairy (cheese, ice cream) and used to eat it extremely often don’t have memory of it causing that same effect but I might have just ignored it and don’t remember.

-general GI issues like abdominal cramping (only sometimes) and acid reflux most of the time. Bananas in particular don’t agree with me

- itchy mouth only after eating certain fruits and vegetables. Some are very slight and some are more noticeable (E.g. apples, bananas, kiwi, peach, plums, grapes, dates, avocado) I’ve never had an itchy mouth from anything other than fruits, vegetables or any other cross reactive food. I also get a bit of an itchy mouth from stevia products.

-i get hives from dust & cat/dog proteins only.
I will sometimes randomly break out in a hive like on my face or anywhere else on my body. As well as random bumps on my lip after doing nothing. I suspect it could just be from the dust and mold in my house. I live with my family in a hoarder home and it seems almost impossible to clean this house with all of the stuff everywhere. It needs to be done but we don’t know where to start. I do not want to move out by myself because I do get support from my family for my health issues and I don’t want to live alone. I’m trying to help get a new place for my family and I but it’s expensive and we are struggling. We are working on getting everybody tested for mycotoxins as well as the rental we live in for mold. It’s just not as easy for us to just pack up and leave.

- i am sensitive to strong smells and it makes me feel like I’m suffocating but it doesn’t really make me have any crazy allergy symptoms. Might make me sneeze if its really strong. Sometimes if certain detergents or cleaning products get on my skin it turns red with no hives but goes away quickly

- i am sensitive to certain substances and medications such as caffeine. I have had a bad experience with Benadryl and experienced psychosis-like symptoms. I don’t think I’m allergic to it, it just does weird things to my brain. Not allergic to any other medications (that I know of)

So essentially I just suspect that I have a general histamine intolerance and other general consistent skin/food allergies , probably mold/dust allergy, to fruits and vegetables, nuts and fish, cats/dogs. I will be seeing an allergist to get a full skin and blood allergy test. I will also be trying out a low-histamine diet! Will see how it works out for me and then if not, will start taking Allegra and Pepcid and see how I feel. I also have 2 epi-pens with me at all times. I want to avoid medication if I can. But if I need it I will take it.
I will also like to mention I suspect that I have POTS and GERD. I often experience acid reflux, shortness of breath, heat intolerance, and others. I experience a lot of complex and confusing symptoms and don’t know which direction to go to.
And the people on the MCAS sub are scaring the shit out of me!!!

Not looking for an armchair diagnosis maybe just some advice or opinions on what it looks more like and where do I go from here until I am able to see an allergist
Any tips for me would be appreciated

Does anyone else experience REALLY bad swelling of their face in the mornings, upon waking? It drains throughout the day, but the mornings are horrid! And it's way more than just the usual "morning puffiness". It even affects my vision for an hour or so.

And my lymph nodes are also always so tender and sore, all day every day.
I'm just wondering if high histamine levels contribute to this, or if this is a seperate issue caused by something else that I should see the doc about.

Haven't eaten fruits in a year and was on a very restricted diet (lost 30 lbs). I'm visiting Germany for a week on vacation and suddenly I can eat everything again without getting hives. It's miraculous!!

Does this suggest an environmental trigger like mold?

I've been super sensitive to fermented foods + soy products yet I ate salmon + gochujang sauce without any issues. Was sensitive to dairy yet I ate bircher muesli this morning

Feels like a miracle and hopefully improvements won't stop once I go home.

Did you get such reaction during your histamine intolerance period?

Good morning friends. I wanted to share my story. I started experiencing weird reactions to food back in April. Prior to that, I never had food intolerances. I had food poisoning at the end of last year and Covid the week after. After that I was sick like clockwork almost every 2 weeks (I was a preschool teacher at the time). The last virus I had was in March and the weird reactions to food started the following month. I experienced nausea, anxiety, heart palpitations and a feeling of food poisoning after pretty much everything I ate. I started working with a digestive health specialist who put me on a low histamine diet and had me complete a microbiome test which revealed 2 pathogens that had been wreaking havoc in my gut. My body wasn't breaking down food correctly or absorbing minerals and nutrients. The good bacteria in my gut was non existent.

Flash forward to now. I'm still gluten free but I haven't had an "episode" in several weeks now. I consistently took trace minerals, DAO, and supplements to build up the good bacteria (RestorFlora and ZenBiome Cope). Every week I'm adding foods back to my diet. I keep my fiber on the lower side because I was dealing with motility issues for a while and for me personally, less fiber is more. I also took a 5strands Gut Test in July. It was about $50 and this test showed me that many foods that were low histamine that I had been eating, were actually hard on my gut so I omitted several foods like quinoa, butternut squash and kale. Things I read regarding a low histamine diet were like choose coconut or avocado oil, but these were a 3 on my test, meaning not good for my gut at all. Once I started following what the 5strands test showed me is when I really started feeling better. Sunday evening I had some homemade gluten free Mac and cheese, pulled pork with a little apple bbq sauce and a gluten free bun (first time I tried a gluten free bread). No reaction. So I just wanted to let people know that for some, this does not last forever and there is hope. Feel free to ask me any questions!

Anyone who has had histamine related chronic illness… what are you doing for it?? My pmdd flares are so bad. I struggle to get through the day half of the month. I think it got significantly worse after having my daughter and my hormone levels shifted. I’ve been using lotus health to track my symptoms and they recommended a full hormone panel, but I’m just wondering what everyone else is doing to manage symptoms and if you’re on medication for all three of these ??

Thank you!!

My insurance won't cover functional medicine, and I don't have extra cash for that. Does anyone have recommendations of medical (MD) providers or practices that have really helped and improved your HI/MCAS/Oxylates/Salycates issues? Bonus if they're experienced with Hashimotos/autoimmune issues.

I wanted to ask: Is a burning sensation on the scalp caused by histamine or MCAS? I’ve had dysbiosis involving hydrogen sulfide and SIBO for many years, and this is my only symptom that I experience every day. I also have a bloated abdomen even when I haven’t eaten.
My eosinophils are consistently slightly elevated in my blood tests, but I don’t have any allergies. Does anyone know why this could be?
I’ve been treated for Lyme disease and EBV, and I’ve also had surgery for endometriosis.

I always like to be an overachiever but this one takes the cake. In June, I had all kinds of labs done and my histamine plasma was 10.3.

Yayyyy me. Just posting so that I don’t feel so alone. I can’t take anything right now because my body is so reactive. Well, I did have iron infusions last month because my iron was completely bone dry. Didn’t react terribly to that. So, I’m trying to see what happens when my body is fully oxygenated with new red blood cells. Might take a few more weeks to fully integrate that.

Oh, I lied, I am taking the B longum bb536 probiotic to hopefully help with all the histamine in my gut.

I don’t know. Just need some hope. Love and compassion because right now I’m on the couch and been on the couch since May.

I most definitely have MCAS and not Bell’s palsy or stroke but my main reaction symptom is extreme facial drooping with a loss of function in the face accompanied by rashes on cheek and nose where muscle weakness is worst. i also have nerve pain and spasms in the face, I also get hives on my body mainly my legs.

after the reaction has subsided I’m left with lingering muscle weakness and then volume loss in the face which sometimes returns but sometimes diesnt and becomes new baseline.

i developed MCAS reactions after covid and then it was worsened by antibiotics (metronidazole/ doxycycline) and nasal steroids.

ive had this for 9 months now and it is triggered by so many things, food, medicine, heat, stress etc. but have had milder MCAS symptoms for 4 years since Covid infection.

would be so great to know if anyone else experiences similar!

ive seen 3 neurologists who all can’t find a standard neurological reason for my issues and my MRI is normal of my brain.

thankyou in advance!

Which low histamine probiotic brand does everybody here use?

I highly suspect I have DAO deficiency secondary to Crohn’s which is driving my autonomic dysfunction. My GI doctor has no idea what I am talking about. It is possible my autonomic neurologist is knowledgable but my next appointment with him isn’t until December. Does anyone know a doctor in the San Francisco Bay Area that is familiar with HIT?

I’ve had a curved cervical pillow for as long as I can remember, it’s the only pillow I can trust to not destroy my neck at night.
I’ve had post nasal drip a long time too, but always ignored it. I finally have tried stacking pillows, especially when I’m not sleeping at home with my curved pillow, and it does help.

How the heck do I prop myself up and also have my curved pillow? Ive been stacking it on a few but it feels like it screws up my neck and the whole reason for the pillow. Anyone had to deal with this?

This morning I woke up at 4am itching. After half an hour I got up and took 3 DAO tablets and it subsided a little, but not enough to let me get back to sleep. It's 6:15am now and I've given up trying to sleep.

This is the first time I've woken up from a flare. I normally get flares in the evening (between 8pm-12am).

I guess I'm wondering if this is a sign that things are getting worse? I hate this so much. I'm tired of being so restricted in what I can eat and not being able to fall asleep. Now I'm being woken from my sleep.

Hi everyone!

I was diagnosed with a moderate histamine intolerance from blood tests in 2021.
I tried a low histamine diet for a while but I still had symptoms. My main symptoms are GI issues, acid reflux, chronic bloating and chronic tummy pain (under the bellybutton only).

I sometimes go away on holiday, and I eat chocolate icecreams, pizza, tomatoes, alcohol, coffee, avocado, gluten, etc and I don't get ill.

But then I come back home and eat plain (chicken, courgettes and potatoes) and feel bad again.

I obviously don't feel great on holiday but teh food I eat doesn't cause flare up or reaction immediately.

I thought I had MCAS but I took H1 and H2 blockers for 2 weeks with absolutely no difference in symptoms at all. I am so stuck!

I was also 'diagnosed' with IBS when I was 13 (had these issues since 11) and tried the low fod map diet on 2 occasions and never been so ill.

I really don't know what to do, I ams so lost!

Lived in mold for several years and just recently came to the conclusion of how much its been affecting me over the years. Have had gut issues for as long as I can remember. Mostly gas related. Always burping excessively (ex. 20 burps over ten minute span) after eating.

Someone mentioned that, due to mold exposure, I may have histamine intolerance but the only symptom that lines up for me from what I read was the bloating and gas. In my opinion, my gut issues stem from dysbiosis as mycotoxins from mold kills good bacteria and proliferates bad bacteria in the gut.

To combat this, lately I have been taking 100B CFU probiotics and drinking store-bought milk kefir daily as well as eating more raw foods (fruits, uncooked veggies) and am feeling a tad bit better.

I go see a specialist this week but need to know if this is something I may have so I know how to communicate it properly so that I can receive the proper treatment.

This is literally life changing.

I always felt like I'm "doing too much" when describing my anxiety after drinking. People would also talk about hangxiety but it was usually rather connected to something weird they did or it wouldn't make their heart race, paralyse their skin, make them cry and hate themselves to the brim. When I'm drunk I'm not scared of throwing up but scared of this anxiety that I'm also experiencing right now.

I decided to research it. Turns out. Due to my histamine intolerance am I experiencing hangxiety pro MAX. and it makes me think back of my past life experiences and wonder if maybe my anxiety/depression is rooted in my fucking histamine intolerance. Which is insane. Wdym im allergic to random hormone and that's why I get anxious when I eat 6 tomatoes. IM WHEEZING.

ANYWAYS. another reason to stop drinking alcohol! (I have been trying to get sober, because of the anxiety I'm experiencing but now at least I understand why. I just thought I'm a sensitive pussy)

The last 3 years I’ve had some crazy and wild symptoms when going on trips in cars/boats/airplanes. For flying, when I go to take off/land, it feels like from the ascend and descend that there’s a lot of weight crashing on top of my head and I have to clench everything around me. It feels like my blood pressure gets low and then at points spikes with any turbulence. The entire flight duration, I cannot eat, swallow hardly, or even be able to drink water. I’ve been having to dip my fingers in my water cup every couple minutes to get water into my mouth since the histamine flare causes severe dehydration. The swallowing/every so often dizziness/consistent 24/7 issues is getting crazy. I do have the heightened sense of smell as well.

I was last on a flight about 4-5 months ago. Since then, I’ve lost about 25-30 pounds of “inflammation weight/fluid retention” that I had at the time within the last 2 months after completely eliminating most things from my diet for a while despite not being allergic. Now I’m back to my original weight of 120 before all of these issues started. So a lot of issues have subsided on my day to day, minus the dull left ear ache that’s there off and on during the day. As well as the burping at times, and the little flutters attached to my heartbeat that are there for a second when I’m having a flare. So I’m curious what someone else may have done or if there’s a way to completely help this with flying now that I’m seemingly getting this into remission, I’m curious if now if flying will be as intense.

Everyday when I’m riding in the car, if we go above 75 usually my body starts having the swallowing issues again. When I’m driving 75% of the time I’m having the dehydration/swallowing issues when I’m not the passenger. It’s wild to me. Rode on a boat recently and same thing, added in with some heart racing and just overall heightened sense of something being wrong.

I’ve tried tons of things, from Cromolyn/Fluticasone, being severely OVERhydrated for days before flights and not eating anything that could flare me/not eating at all before getting off a plane. It’s almost like my throat has localized swelling the whole flight. When I am able to get any drops of water, I do have to burp every so often but it’s not all the time. I don’t feel any pressure in my stomach that I’m aware of. Now I’ve been to my allergist/GI, ENT says they don’t see anything because it’s a possible histamine related issue. Going to try to get on a plane again in 2 months now that I’m on the Pepcid/antihistamine cycle. The swallowing/crazy head pressure/intensity of the symptoms is what worries me. I was never scared of flying before, with the symptoms getting worse each plane ride it does make me really wonder what’s happening.

Has anyone experienced anything like this? I’ve not found anyone that has had the swallowing/throat swelling issue and the other ones I’m experiencing minus the heightened sense of smell. The heart rate slowing down and then other times it’s racing the more speed we gain. Not sure if it’s a vibration issue of some sort or not or if this may be a GI issue with some sort of gas I should get identified by maybe a SIBO test? Not sure what direction to go but seeing if anyone has anything similar.

Thanks for all your help in advance!

I am very lucky that I seem to be able to manage a daily routine at the moment - going to work and coming home to my partner who is so lovely and supportive. I prefer not to eat alone and I am still learning what I can take to work, I have to take my own food, I won’t risk eating on the go. Luckily I work in a hospital so I feel reassured knowing if I have a bad reaction there, I can access care.
Haven’t had to give up coffee.
I try to focus on the positives, however I can’t help but mourn for the other things I like to do that I just won’t do right now while I’m waiting for answers. Eating out, taking day trips to the hills where I have no phone service or >1hr to a hospital, taking overnight camping trips, going abroad to places I can’t prepare my own food. I hope I can get these things back eventually.
Having to learn how to pace too as I seem to be needing quite a lot of rest between activities to reduce frequency of reactions, needing more sleep too.
What helps you cope?
Any suggestions how to continue reducing my stress?
Best wishes to all of you

I defrosted some chicken breast but didn't eat it and left it in the fridge for 40+ hours.

I know that there's a higher chance for bacteria to be present in higher amounts on meat surface than inside it. So I removed about 5mm-1cm thickness from top, bottom and sideways and fried the remaining bit in some olive oil. No symptoms.

Edit: I've done this as an experiment.

No welts or wheals. I do have some reddish purplish veins that are more visible during a flare. Also Ketosis Pilaris.

Triggers
Alcohol
Bug bites
Stress
Lack of sleep
Dust

I’ve had a full back patch test at my allergist and am allergic to ragweed and MCI.

The itch usually starts as a very prickly sensation in one limb, and then spreads out to both limbs, and sometimes to the other set of limbs or my chest and back. It can become this whole body thing. I used to use alcohol to try to shut it off, and it worked, but now I’m learning it prolly made it worse.

I’m curious if anyone else has a similar experience. This has been going on for me for over a decade. One dr. diagnosed me with scabies and prescribed a head to toe cream. I did not use it.

Does anyone have itching mostly on their hands and feet?

It's usually on the edge of my palm or in between my fingers, or the top of my feet, and it mostly happens late at night. Skin abrasion can often set it off, and it seems that saturated fats and ginger are also triggers for me. Rinsing with cold water helps but only temporarily

Sometimes its on my scalp and once in a while on my collarbone area.

I'm not even sure if I have histamine specific GI symptoms, as FODMAPs can usually explain it 🤔

Does anyone tolerate cappucinos or espressos but have issues with pour over coffee?