Це відео не доступне.
Перепрошуємо.
What I Eat in a Day with Mast Cell Activation Syndrome (MCAS)
Вставка
- Опубліковано 11 лис 2021
- Join me, for a typical days menu. Mast Cell Activation Syndrome (MCAS) is a rare allergy disorder, however it’s a common co-morbidity in Ehlers-Danlos Syndrome (EDS) and also a typical co-morbidity of Lyme disease and other autoimmune conditions. So, you can see why I’ve developed MCAS. It can be disabling, life threatening and dangerous, so management is super important. I carry an epipen around with me-and at the beginning of my journey, I have strict diet plans under the supervision of my doctors. I’m starting to get the hang of my ever changing allergy disorder, but I hope you found it interesting to see my typical day of eating.
*Disclaimer: This is just what I eat to keep myself healthy and to stay away from flare-ups & anaphylaxis. I’ve had help from my doctors and physicians, and I’m not in anyway suggesting what eat as a diet. I’m simply sharing to bring awareness to MCAS, and for you to get an insight into my day-to-day life with chronic illness/ disability a little better.
- My Instagram: @stelasulzdorf
...
- Get to know me: What is Ehlers-Danlos Syndrome? | My EDS Story 🦓
• What is Ehlers-Danlos ...
#MastCellActivationSyndrome
#MCAS
#WhatIEatInADay
#ADayOfEating
#EDS
#Allergies
#AllergyDisorder
#EhlersDanlosSyndrome
#MyEDSstory
#EDSdiagnosis
#EhlersDanlos
#HypermobileEDS
#BabeWithAMobilityAid
#MobilityAids
#HypermobileEhlersDanlosSyndrome
#ChronicIllness
#invisibleillness
#lupus
#LymeDisease
#AutoimmuneDisease
#healing
#disability
#dysautonomia
#HealthJourney
#LymeWarrior
#LupusWarrior
#Fainting
#POTS
#PosturalTachycardiaSyndrome
#POTSsyndrome
*Disclaimer: This is just what I eat to keep myself healthy and to stay away from flare-ups & anaphylaxis. I’m under supervision of my doctors and physicians, and I’m not in anyway suggesting what I eat as a diet. I’m simply sharing to bring awareness to Mast Cell Activation Syndrome, and for you to get an insight into my day-to-day life with chronic illness & disability.
I’ve got mcas , I went to a allergist which really helped me .
I’ve helped myself in the end I’ve got a whole list of things that help control it .
But I live a very non toxic lifestyle.
And it really really helps .
Mcas has to be taylored .
I’ve been on front line of disease for 30 plus years and now doing a degree in health science. I think alot of environmental factors have huge amounts to play in all of this .
It’s interesting to see what others can eat with MCAS. I’m half way through the vid & I see a lot of high histamine foods. For me, I cannot tolerate those at all. I’m glad they work for you though. What I would do to be able to eat rice and grains again. ☹️
The funny thing is, since filming this video I’ve had to swap our a lot of my foods for lower histamine ones too. The journey of MCAS is forever changing. 😅 I hope you can start to introduce grains again one day 😢
I’m jealous 😂 I can only eat fresh meat and eggs no additives of any kind definitely not coffee 😢
That’s interesting, gluten free grains such as rice, quinoa & buckwheat are low histamine & so are recommended on the low histamine diet! So it’s possible you have more than just MCAS affecting your digestion & diet!
@@coppertheginger7514same …. I have to eat super clean fresh food I try adding other foods in to no avail . Mostly meat .
Rice causes harsh knee pain with every step. Pasta? Wow! Eat some for me! 👏
I still can’t figure out a non reactive routine that provides enough satiety. But I can eat way more than I could a year ago and my brain sympathetic healing. I keep trying and praying for guidance. 🙏🏼💕
Stay grateful everyone 🤗
I always thought i could rarely eat anything at all. After suffering mcas for a year now, im working on introducing some foods again to get nutrition back.. thank you for showing me that i may be able to have a semi normal looking diet that isnt just chicken and rice
I also have MCAS, RA, Fibro, Epstien Barr virus, Asthma & MCS. Alpha-gal allergies among other food allergies and due to the MCAS, I'm now reacting to all meat except some fish 🙄 .
I'm having to re-evaluate my food making habits now. I'm lucky in that I can have small amounts of dairy, but no nuts, legumes, beans, meat etc.
It can be a hard Syndrome to deal with. I feel you.
It is very encouraging to see others, and you are blessed to have a partner who cares for you. I wonder often who would be willing to put up with all my medical complications. This gives me hope. You have a gem in him!
I recommend supplementing with collagen as MCAS releases tryptophan which is destructive to collagen , causing joint issues , since supplementing it’s eased my osteoarthritis and my joints tremendously
Thanks so much for your recommendation. I’ve yet to find one that actually helps. Can you recommend any good brands for me to try?
It’s so nice to see videos like this & to see people caring for each other ❤️
Thank you so much for watching and for you kind words! 💕
I has MCAS & what really helped me was the book “Food Paradox”. To figure out what I can eat.
I too have Ehlers Danlos and I feel like I have so many triggers that make me feel worse. I recently went to an allergist and just had blood work done. She suspects MCAS. When you had your yogurt you mentioned "no coconut" and I thought it was just me that flared up from coconut! Thanks for sharing this video!
MCAS is really frustrating to live with , especially when you’re trying to come to terms with it-and every food and environmental trigger sets it off! 😢 I’m so sorry it’s affecting you too! Just remember that blood work is a great indicator, but often times, if you’ve cut something out of your diet, the test won’t pick it up. That’s because it’s not currently in your system and won’t cause a flare-up. After my blood test, I had to do a trial and error with my doctor and have my EpiPen to hand… just in case. Avocado, which came back negative on my blood test, caused me to have anaphylaxis. I had cut it out, a year prior to my test, therefore it came back negative. I really hope that made sense and good luck with it. It’s really tough at the beginning, but there are meds such as Nalcrom that you can ask your doctor for and inhalers that can help the asthmatic symptoms. It gets easier with time. I’m rooting for you! Thanks so much for watching. Xxx
Hi Stela, I'm new to you channel. I also have MCAS and Multi chemical sensativity, Im on a gluten free, low histimine and anti inflammatory diet its truly a hard experience to go through, Just wanted to say thank you for sharing your story.
Hi Armani and welcome to my channel! It’s so complicated, isn’t it? I hope you will find a way to manage your symptoms as best as possible soon! Xx
Armani can you eat plain potatoes or beans?
@@CalmVibesVee Hiya, I can eat plain potatoes but not beans..
@@armania8008 ok, my dream goal is to be able to them. My microbiome has come a long way so i am hopeful. Im testing beans now, no where near perfect but better than times before. I think dosing peeled apple & blueberries has improved biome.
I have a strang inflammation with potatoes that effects my urination. My legs swellwith all foods but raw non starchy veg but my weight drops to 107 and energy is low. Adding apple and blueberries is good but still very hungry. I react badly to white or brown rice.
Are potatoes your staple for satiety?
I also have very severe mcas and am amazed by all the foods you can eat, millionaires shortbread, curried sauce and nut bars! I cant eat anything processed or with any additives, if someone even eats anything with any spice or strong sent near me I get various degrees of anaphylaxis. I also get ana from peoples perfume and laundry detergents and at my worse any kind of toxin in the air. Everyone is different but it looks like your mcas is not very severe, I hope you never have to experience how bad it can get.
Same! I'll react to ANYTHING except oats with milk. That's the only thing I can eat😭
@@onlytheartofliving6936 That sounds really hard, have you been that way for long?
It think it can be tricky measuring another’s persons severity🥲 what is severe can be individual and especially when combined with other diseases
@@deeedooodee1938 My only point is that many with mcas can not eat as much variety and pre made foods as she can so she isn't very severe on the scale of the spectrum.
Thanks for sharing. So unfortunate that you have to avoid triggers for MCAS. You and luckily to have Chris by your side. Sending you big hugs. 🤗🤗💕
Thanks so much! Chris is so good and remembering what I can and can’t eat! Big hugs back 🤗💕
Another great day in the life hun. Never really thought about what you eat in a day as a whole. Quite interesting as you avoid lots of fruit and veg which trigger your allergies. Hopefully give people some ideas. Luna gets everywhere 😂 Great work hun💗💗
Thank you, hun! Love you lots 💕✨
Hi Stella! Thank you so much for sharing your morning with us all. Very nicely done ✔ 👏. Mark Bensette Aux Bois 🇨🇦.
Thanks so much for watching! I really appreciate that ❤️
@@stelasulzdorf you are so very welcome Stela 🙏
@@DreamscapesMusicCinema 🤗💗
Loved watching this! I don't have any allergies but I like simple foods as well and eat the same thing over and over hehe. you know my fave are the coffee and random snacks! I love mixing sweet and savoury too; Chris' food looks soo good!! lots of love to you stela! xoxo
Thank you so much, Tania! 💕 Aww you are just the sweetest. It’s taken years to get the hang of eating around my allergies. But finally, I’ve managed to get the hang of it. Hehe sweat and savoury is the best! Lots of love to you too! Xoxo 💕
A great video Stela! Loved it and foursies or fiveses' 😁💫. Very insightful to see how you plan your meals. It's good to see that you can still eat some foods and treats you enjoy too 😊😉❤! Sending love and hugs 🤗 🤗🤗❤❤❤💫💫💫
Thank you Chalice! It’s taken a few years to finally get the hang of the things I can and can’t eat. But thankfully it’s easier now with food! Sending love and hugs back 🤗💕
So lovely to learn what you eat in a day! Chris looks like an incredible chef! And i love that you do fourzies or 5zees 🤩 everything looks yum! Thanks for sharing 😘😘
Thank you babe! I realised I spelt that wrong. 🤣 where is my head these days lol. It’s taken so long for me to finally figure out the things I can eat. But I love foooood! Love you 😍💕
@@stelasulzdorf i hadn’t even noticed 😂 i think i may have but it’s fine haha feel you 🥰 all good! Loved your video! And i looooove curry too and sweet potatoes yummmm!
@@skyy_yoga Oh yay! Thank you babe 💕😘😍
Thank you for sharing your journey with us. Wondering if you’ve tried DAO? Hearing lots of good things about it.
😮I can't eat leftovers because of the histamine.😢.
Anything past 16 hours cant touch my lips.
Great video, Stela! 😊
Thanks so much for watching, Georgina! I’ve been thinking of you. 💕
Wow! Thank you for sharing!! Just diagnosed with severe MCAS but also have Reynauds, Lyme, Low Omega, Mold, MTHFR C677t, candidiasis, Epstein Barr & heavy metals. I am limited to some white fish, an organic pasture raised chicken, and some squashes as well as celery. This has been going on since mid July of 2023. In a few weeks I can begin to add one thing a week if my body can handle it but only low histamine foods.
Another awesome video!!!❤️❤️❤️❤️
Aww thanks so much Simona! So lovely to see your comment here 💕
Hi Stella, I’m back again making notes now that I’m diagnosed with mcas 😂 Cutting down on gluten is going to be so hard for me 😭 but it’s high histamine, so I’m going to have to try 😅
Luna is so beautiful 😍
Although I eat about 5 times as much as you, so I will have to multiple this all by 5 😂 (I don’t eat it all in one go, I just eat a full on meal every 2 hours otherwise my nausea & dizziness kicks off 😂)
Last thing, I hope to do my own video on this when I’ve figured all this out & got used to it, so maybe you’ll get a few MCAS friendly ideas when I finally do my own video on it in a few months 😊
Hey Georgina! So sorry I’ve taken so long to respond. Ahh.. I’m so glad you finally have your MCAS diagnosis. It’s so common in EDS, so I was wondering if you’d explored it. My diet has changed so much since making this video and I eat so much more now too. 🤣 I can’t wait to catch up on your videos and see what you’ve been up to!! Xx 💗
@@stelasulzdorf do you have fybromyalgia from your mcas I have Asperger's add diagnosed hsd but testing for eds what a journey I think mcas causes OCD to
When you develop an anaphylactic reaction to something does it ever go away? I'm newly diagnosed and can't even go near my pets or my lips, tongue, and throat swell. Every food I eat causes the same thing. I'm so tired of this. 😪
I’m so sorry to hear this 😭 it really just depends. I have other illnesses and I’ve found that once I started to get my other stuff under control, my body is less stressed and my allergies also get better too. Have you ever been tested for other conditions? MCAS is usually a co-morbidity in EDS. X
I have it also my heart is broken I have one child he 42 I've always known he has allergies they just started and he already allergic to wheat soy milk .he doesn't have to do pen yet I do alot they tubed me last month and was on ventalator it's awful thing to have.
My MCAS is so bad the only thing i can eat is oats! I'll react to EVERYTHING, also meds😢
Rice is at the core of my diet. I can't tolerate any other grains. Corn is my absolute WORST, followed by wheat/yeast/mold, soy, I don't tolerate ANY beans/peas/legumes that means coffee/chocolate/peanut 😭 thankfully I'm good with all tree nuts including coconut 🥥🌴 which is a staple. I also have some "partial" allergies (egg whites, white fish, casein) the only severe anaphylaxis I ever had was from a chicken wing with habanero sauce 😵 jalapenos give me a milder reaction if they're spicy enough. To anyone who is unfamiliar with MCAS it sounds like made up nonsense but it's very real to us who can be literally harmed by just eating "normally". 😞
I am seeing olives in that bowl. I used to love olives, but I read they were high histamine.
I have hEDS and am realizing I probably have Mast Cell Activation Syndrome as well. I have trouble swallowing rice and oats give me bad indigestion, even the organic ones. I can't eat eggs 😭 I'm having trouble finding something to eat for breakfast.
Does MCAS cause a swollen face? I am not allergic, but after eating certain foods - rich in histamine, or large amounts of meat or gluten, my face swells up terribly. The next day, I look like a different person
Yes, it does. I have an MCAS diagnosis and my face swells. Especially round my eyes, but its like my whole face puffs up.
I have sensitivity with red pepper.
How did you get diagnosed and what were symptoms? Im in Merseyside in the UK and have POTS and have just started having symptoms of mcas so my GP is sending me for bloods this coming week xx
I was having reactions to pretty much everything I was eating and I was coughing constantly. My doctor suspected asthma, but once I started on the pump I was still having reaction. Considering I have EDS, it was the next plausible thing to test. I take naltrexone and an allergy inhaler to help manage the symptoms now. I also cook everything from scratch and try to test my allergies every 6 months to a year! Good luck with your results xx
@@stelasulzdorf what test do you take for your allergies
oh wow. My MCAS is so bad that i can’t eat anything but 5 specific foods with no seasoning but salt and has to be cooked a specific way or i’ll react
I’m so sorry to hear this. 😔 I was like this too at the beginning. But hang in there, because it starts to get better with time. It’s literally taken me my whole life to get my MCAS under control. Xx 💗
@@stelasulzdorf omg that gives me so much hope. thank you ♥️♥️ can i message you somewhere??
Hey Molly could you tell me what you eat? I'm looking for foods that I can add to my diet but I'm also reacting to almost everything
@@tahirballikaya213 also potatoes, blueberries. eggs work for me but not for everyone. but again, everyone is different
@@mollyrae0918 depends if they have oxalate problems.but they work for me to
Hi everyone! I struggle with food/drug intolerance/allergic reactions for two years after having a severe “food poisoning” and diarrhea. It could be covid as well , i dont know. I was so bad and a fever was so high, that i couldn’t go anywhere and test myself for covid. Long story short, since then I can barely tolerate any food. Colonoscopy is normal, Endoscopy- mild gastritis. Doc said its PI-IBS. I suspect that I might have Mast Cell disorder, i bought OTC Famotodine and after a week I could tolerate more foods. I don’t really see any difference in symptoms between Systemic Mastocytosis and MCAS. How were you diagnosed? Did u undergo bone marrow biopsy? As far as I understand patients with MCAS has no KIT mutation (maybe different mutations, but at least not cancerous) Please share your experience. What was your GP approach? Many thanks
Interesting you say this because I haven’t had such issues since I had Covid and norovirus in 2022. I really feel like poor gut health and an excess of bad flora overtaking the beneficial is causing a large amount of my flare ups. I’ve never had borderline anaphylaxis until a few weeks ago and the past couple years my diet hasn’t been the best. I think my gut health is directly affecting the DAO and inhibiting it from doing its thing
Haven’t had issues until I had Covid and norovirus**
did you try carnivore, or gaps diet? *
cappuccinoooooooo 😂 and peanut butter food of champions 💪🏽
Haha yes! Chris’s favourite 😂
I can't digest any grains not even oatmeal even chickpea pasta I will have a reaction basically meat fruit and vegetables
Dear Stela, are your allergies IgE-mediated?
Do you have allergy to white egg or the whole egg??
Hi Stela.My name is Stanislav. Can you ask you Question.How you developed MCAS ,lot of our Vaccine INJURED people, even me after taking the vaccine. I can't eat eat,everything I can't take any pills even vitamins,I cant drink coffee, or a herbal tea.im getting reaction like hot waves in my body,fast heart beat,plus white tounge,dizziness, difficultly walking. is it the same with you ? I'm sorry for asking just my GP keep ingronoring me.
I’m sorry to hear your GP is ignoring you! 😔 I developed MCAS as a result to Ehlers-Danlos Syndrome. I hope you can find a way to get tested. I had to go to a private clinic to get taken seriously before my GP took any notice
I got mcas after Covid infection . After finding right Dr found that I am hypermobile . Never had any issues prior to this
You should try carnivore! Many people have gotten improvement with it.
I developed histamine intolerance going Carnivore-my Vitamin C absolutely tanked!
Are you on IVIG?
Carnivore diet and one meal a day changed my life
Do you have hsd Asperger's? To with mcas
@@Truerealism747 I have another kind of autoimmune problems such as nasal polyps, rhinitis, graves disease and thyroid eye disease, going full meat water and salt for a while and reintroducing some foods and testing one by one has reverse avery single one of them. If you wanna try this you need to search wich foods are generally bad for people with autoimmune conditions (dairy, eggs, grains/gluten, starches, nuts, nightshades, alcohol, coffee and any processed packaged foods) usually people can tolerate meat and can start from there, my diet now is meats and a bit of fruits, and lots of homemade fermented foods, check out the GAPS protocol.
No fruit at all?
To bardzo zła dieta dla Ciebie. Nie pij kawy! Pij wodę z cytryną. Źle wyglądasz jesteś zmęczona. Twój organizm marnuje energię bo Źle jesz. Batonik... musisz jeść tak by się leczyć mało cukru. Mało przetwozone żywności.
I stopped eating all nature valley…..all of it has GMOs
There is nothing wrong with food with GMO’s
Maybe it’s your car that is causing the allergy
That is clearly not how this syndrome works🥲 I hope you are not joking.