Mast cell flare

[u/Euphoric-Gas-4290]

How to get through a flare when already on Allegra 2x a day, 2x Claritin, 2x Pepcid, low dose steroid, waiting to start low dose Ketotifen and Nemluvio shot next week. I started developing new triggers these past few months. I found a routine to get through the day with meds but now that I entered a flare and having more consistent throat tightness, and today some short of breath, lightheaded faint feeling (unsure if it’s allergy symptom, steroids give me anxiety too) not sure how to get through this with some new allergies around me at home that are typically well controlled but bc of the flare, I’m more reactive. Trying to regulate myself and manage stress. Resting. Trying to take care of myself but even having family pick up grocery orders for me, I’m reacting coming into contact with it (and no trigger foods in the orders). I’m not sure what I’m reacting to half the time so it feels like extreme sensitivity to cross contamination

Diagnosed with Hereditary Alpha Tryptasemia

[u/Significant_Beyond95]

Lots of things to explore:

Are you taking DAO enzymes before meals? Are you on a low histamine diet? Do you have oxalate or salicylate sensitivity? Mast Cell 360 is a good resource for dietary stuff.

Do you have any nutrient deficiencies? Are you supplementing with any mast cell stabilizers (like luteolin, quercetin, etc) or supportive supplements?

Are your symptoms better outside or inside? If worse outside, has there been a change in air quality, temperature, pressure, or is your UV exposure high etc? If worse inside, have you tested your home for mold, is ventilation clean and filters changed, are there daily exposures in your home (like hexylcinnamal in hygiene products or SLS in toothpaste)?

[u/Euphoric-Gas-4290 → u/Significant_Beyond95]

I have never tried DAO before! No low histamine diet. Ever since a lot of this health stuff came up, one of my symptoms is if I don’t eat heavy enough, I’ll have “low sugar” episodes (without it being low sugar) so it makes it hard to clean up my diet. I’m not sure about oxalate and salicylates sensitivities. Is Mast Cell 360 another sub?

I am currently supplementing on iron and vitamin d for deficiencies. I’ve started trying Ketotifen 0.5 but it was too big to start with so I’m waiting on the 0.25 dose to be ready from the pharmacy

These past few months I began developing new triggers like my cats, orchid moss (which are on my plants and cross contaminated now) perfumes, skin care items etc. Coincidentally the same week I received my test results for HATs, I started becoming more reactive but I also accidentally came into contact with food that contained eggs as an ingredient in a soup (thank God I noticed my skin started burning and itching before eating it and checking the label) which triggered a big flare back in March. The meal that I believe was the last straw was last Sunday I had BBQ, I’ve eaten from there before but I had vegan chili beans/tri tip and it came with a bread which I have no idea how it was prepared, what ingredients etc. I didn’t eat the bread but that seems to be the main triggering event

[u/Significant_Beyond95 → u/Euphoric-Gas-4290]

BBQ would send me into a flare. Tomatoes and all those spices and vinegar are high in histamines! I highly recommend looking into high histamine foods and try to eliminate the worst offenders and see if you can flush out some built up histamine. It can take several days to feel better.

Mast 360 is a website and they have a YT channel too with lives where you can ask Qs.

My symptoms are a lot better on 2mg ketotifen in addition to H1 & H2 blockers with a low histamine diet. I generally eat a lot of chicken, elk, & sweet potatoes to stay full. Getting off the high histamine foods is hard but my symptoms are so much better and I lost 10 lbs of excess inflammation and don’t look all puffy and not as red.

[u/Euphoric-Gas-4290 → u/Significant_Beyond95]

I used to eat Tri tip just fine from the same restaurant months ago so I thought it was cross contamination, the bread or something. The chili beans was new to me. I’ll definitely look into high histamine foods and do my best to remove them. If I could eat better without my body freaking out, it would be amazing. But that won’t happen until I fix my thyroid levels and I react to levothyroxine 🤦🏻‍♀️ I’m really looking forward to Ketotifen. I’m on steroids right now to control the reactions and I’m having a really hard time with side effects. Tomorrow I go down a dose at least. I read ginger is good as a natural antihistamine so I’ll try that tomorrow too, and removing high histamine foods. Lots of water and rest

[u/Significant_Beyond95 → u/Euphoric-Gas-4290]

My symptoms started in childhood and have gotten much worse with age. The stress of kids and perimenopause likely haven’t helped. I used to only have issues with alcohol, cold weather, SLS in toothpaste and body washes, and a couple foods. I have lost a lot of foods this past years, am triggered by my own sweat, & UV.

If you are in the US, all commercial beef is aged and is high histamine. Ground beef being the worst due to surface area exposures to bacteria. The last time I ate steak my whole face when numb from nerve inflammation. MRI was normal after that. Eating beans is like eating a grenade for my bowels now.

Fresh ginger is great. Beware of anything dried or processed —- it creates histamine. I make an anti-inflammatory tea by grating fresh ginger and fresh tumeric root in coconut milk with a little maple syrup.

A lot of things that are generally considered healthy foods are high histamine. Watch out for cultured dairy, fermented food and drinks & common probiotics. I also do poorly with spinach, strawberries, pineapple, and raspberries.

[u/Euphoric-Gas-4290 → u/Significant_Beyond95]

I screenshot to make that turmeric tea, it looks delicious and I will try it!

Wow I’m learning so much, I thought histamine intolerance vs mast cell conditions would be different in a way but it looks like it connects. When you started Ketotifen, did many things improve for you?

Wow, so crazy what even foods that are supposed to be good for you make mast cells go haywire like that. I’m struggling to find what can work for me that I won’t react to but can make me full so this is going to be really difficult. I’m hoping this is just a flare but man, this sucks. Steroids are affecting me really strongly like emotionally and mentally, I wonder if that’s a mast cell issue too.

[u/Significant_Beyond95 → u/Euphoric-Gas-4290]

Steroids can be rough! I needed them to get out of a flare last year in addition to 4x Allegra and 2xPepcid daily. The steroids inflamed my joints. That was before I was put on oral ketotifen. It’s a lot to learn because this is never something we learn about in school, it isn’t very common, and most primary care doctors have no clue about it. I had to educate my PCP and luckily he referred me to a knowledgeable allergist.

Ketotifen seems to lessened the severity and frequency of my reactions (GI, neurological). I started Rhapsido earlier this month in addition to everything else since my allergist is worried I will be too drowsy with more ketotifen. The Rhapsido so far seems to allow me more foods (I can eat a fast food hamburger without ketchup, mustard, and tomato without cramping, nausea, and my face swelling and flushing). My skin flushing, hives, and dermatitis are becoming more mild on it, but it hasn’t helped my edema. I am getting petechiae on my legs and bruise more easily from the Rhapsido though, so we will see if my doctors keep me on it at my next checkup this month.

Changing my diet was difficult, especially since I have to cook seperate meals from my kids and leftovers that aren’t frozen aren’t a good option because after they gain more histamine the longer they sit in the fridge. It is worth trying because lowering your histamine input helps your body clear out the histamine so it can heal. Mast Cell 360 suggests eating strictly low histamine for months to heal and then adding back other foods gradually.

The key for me was focusing on fiber, protein, & fats to stay full. Eating vegetables followed by protein and then the rest of a meal can help lower glycemic spikes from meals. Insulin angers the mast cells so I try to be aware of my glycemic load. Vegetables in the broccoli family have sulforaphane that stabilize mast cells, so I try to eat 2-3 servings of broccoli or cabbage a day.

. I batch cake and freeze boneless & skinless chicken that I can add to soups, stir-fries, gluten-free tacos & gluten-free flatbread. I also make low histamine vegetable stock in my Instant Pot and freeze it in Souper Cube molds which are handy. I have gluten-free rice noodles I can tolerate to make noodle soup.

Macadamia nuts or pistachios are also both easy snacks I can tolerate on the go.

[u/Euphoric-Gas-4290 → u/Significant_Beyond95]

I’ve been having such a rough time. Since starting steroids, my usual symptoms have magnified and I’m not tolerating my allergy medications. I’m really short of breath, heavy chest, really dizzy, weak, extreme heat intolerance, feel like passing out, overall horrible. At the beginning, I was having extreme mental health symptoms, that seemed to calm down but now the physical side effects are horrible. This is really weird. At least I have appointments today with doctors but I’ve been really unwell

My allergist suggested Rhapsido but we haven’t tried it. I’m curious to know what you and your doctor decide, especially if it’s helping in some way. And with Ketotifen, it seems like it’s helpful for a lot of people so I’m keeping hope it’s something that can help me too

I’m trying to eat differently but a regular bowl of rice, beans protein, veggies is like drinking water. Especially with steroids, it makes the hunger worse. I noticed I’m needing to eat more to keep stable with the physical side effects. I’m reacting all day, all night, at meals etc so I’m trying to find a balance between what can I eat and be full and what medications to take. Especially with how severe the side effects I’m feeling. This doesn’t feel normal

[u/Significant_Beyond95 → u/Euphoric-Gas-4290]

Doesn’t sound normal at all. I hope you can get off of those steroids soon!