Living with EDS: Mast Cell Activation Syndrome | Vogmask Giveaway

[@vinsoriano493]

i was diagnosed with mast cell activation disorder and you did a much better job of explaining it than my doctor.

[@christinadoherty3212]

+Vin Soriano Aww thanks! Sorry I had to take it down to fix the giveaway link. Hope you got to see the whole thing. Its back now! My doctor didn’t explain it very well to me either. I learned so much writing this script hahaha 💕

[@onefabknitternz]

I’m not surprised haha.I met me immunologist and he said in the impression part of the report” I prefer the diagnosis label chemical sensitivity to mast cell activation disorder”.the exact label is probably academic as there is no specific test or treatment for epithet condition >….SERIOUSLY>>. This is the same person that tried to say EDS isnt a connective tissue disorder…

[@cynthiajohnson4329]

Christina, if I could give you 1,000 thumbs up, I would. Superior, articulate, concise video that I wish every health care provider would watch and ponder; but, if wishes were horses, we'd all ride. 💕 Nevertheless, very grateful that so many people will benefit from your efforts. Thank you!

[@samiamisme]

Cynthia Johnson yep I fully agree!

[@christinadoherty3212]

+Cynthia Johnson Thank you so very much! I really appreciate it! I tried my best to make sure it was in depth but in a way that was easily understood. So often I think its either over explained or not explained at all. It was interesting when I was doing the research for this how little I really knew about a condition I have been battling for years.

[@sayurimei]

I got to say as someone who took microbiology and loved her inmunology classes, you did a great job explaning in a simple language what Mast Cell is about. You would had made my professor proud. But is true, from my pov as a nutritionist and dietician, with mast cells activation nothing is set in stone and I loved that you mentioned the part of how histamine builds up through time, even left overs. If you want to slow the process a tiny bit will be to cook and inmediately freeze (not refrigerate) but I am an advocate for patients that suffer from this to eat inmediately as meals are prep. The thing that might be time consuming is the planning, but once you get the hang of it, it gets easier with time; thats how we have been handling at my home. But you did a terrific job! But again, look at us owls lol

[@christinadoherty3212]

+sayurimei Thank you! That means the world to me. And Thanks for the tip on the foods. I hope other people see this! 💕 Great information!

[@sayurimei]

Christina Doherty I live to serve our family

[@tracyelizzar]

Your video should be shown at Medical Conferences. You explanation is awesome. Thank you so much for all you do. God bless.

[@christinadoherty3212]

+tracy elizzar Aww thank you! Im glad it was helpful! 💜

[@pkendlers]

My mast cells are so strong, they're planning to take over the WORLD... :(

[@pruriient]

Cheryl Coderre uh, oh no D:

[@StalkAlexHere]

This would make for a fabulous comic....!!!! 😁🤓😅 (Or maybe a sick-sense of humor is just my way of coping! -pun intended) 🤪

[@MrsMemster]

I have EDS, MCAS, POTS, and CFS - so this video was very well done. P.S. I recognized your Frey Life vinyl art on your wall!! ♥

[@katsuyafeather1309]

YOU DID SUCH A WONDERFUL JOB EXPLAINING MAST CELL ACTIVATION!! I'm having a very hard time with my own diagnosis and mast cell related complications and it was great to hear so many things I can relate to and help me feel less alone in all this. Also I noticed your "Do what you think you can't do" from the frey life on your wall and I appriciate it!!

[@eslamsokkar1669]

Hi. I'm a GP and I like to say that I learned so much from you. Not just from seeing what it's like to have the condition but from the amount of information that you know. You are very smart and your enthusiasm is great. Keep it up. I hope you keep fighting and figuring out more ways to work around it because seriously, if anyone can beat this thing, it's not the doctors, it's you 😄👌🌻

[@BeverleyButterfly]

You explained this so well thank you for this I learned a lot and now your vlogs will make even more sense

[@christinadoherty3212]

+Miss Adventure Awe thank you! I really tried hard to make it easily understood. I have been dealing with this condition for years and found that I still understood very little of it going into my research. Nobody ever seems to want to explain it in a way that patients can understand, and I feel like that is such a shame. 💜

[@BeverleyButterfly]

Christina Doherty I sometimes think they don’t want us to understand because then they are still in control but you doing this will help so many people

[@auradragonfly]

I agree, she did.

[@darkbluematter1753]

This was fascinating! Great video. I love that you put so much research into it. I have had bad allergies and asthma since I was a kid. I developed mild POTS and a lot of food reactions and GI issues when I got older, most recently and worst-dysphagia. My lab work was negative for mast cell disorders. And since you explained MCAS treatment is mostly the same as treatment for regular allergies I’m not going to investigate that further. My latest GP wants me to try inhaled steroids and Singulair to see if my dysphagia is allergy/asthma related. I can’t tolerate the side effects of most antihistamines so I’m a little scared to try the Singulair. In the meantime, I’m still taking the CBD oil that you recommended and it is still helping! Any improvement gives me hope that I will not be stuck with this stupid difficulty swallowing forever. I know your issues are a lot more complex than mine, but I really hope you can eat again someday too!

[@christinadoherty3212]

+DarkBlue Matter I can 100% relate to the dysphagia struggles. I am hopefully going to start swallow therapy soon to see if I can get my swallowing back. Ill keep you updated if it helps. But Its definitely worth a try with the meds. Singulair is different from antihistamines, it targets a whole different receptor. So you may not have any issues. It funny, I can’t tolerate Singulair but do wonderfully on antihistamines lol. We are all so different and complicated. But the great part of Singulair is that its great for mast cell and for true allergies 💜 Best of luck! I know starting a new med can be terrifying

[@lukeskywalkerlucasfilm]

Thank you for your video. We appreciate a real patient perspective!

[@auradragonfly]

Thank you for the informative description of MCAS! I'm not sure if I have this but my throat definitely reacts to chemicals and fragrances. My mom even tried hard to go unscented everything when she visited me yet there was something her suitcase somehow picked up that my throat reacted to. Fortunately it faded and after the first couple of days my throat did not react any longer. I own a Vogmask and also just an ugly 3M mask but it works too. The Vogmask is for to put on quickly. We all just have to be as careful as we can around triggers.

[@MisaIsBored]

I've recently been diagnosed with eds and pots and was told by a medical professional to look into mast cell activation as it explains a few of my other symptoms. This video really helped me get my head around it thanks xxx

[@persephone2706]

Your voice woukd be so perfect for animation! I love it. ♡

[@raylanier4519]

Thinking of you and hope you’re not suffering.

[@loiscassels8966]

You are amazing. I appreciate the research and effort it took to put out this very understandable video. I learned a lot. Thank you!

[@christinadoherty3212]

+Lois Cassels Thank you, that means so much! 💜

[@SweetiePieTweety]

You are a gift to this community! Thank you for using your gifts despite your medical challenges to bring this information to the world. You are one of the official card carrying members of the exclusive... Three ❤️❤️❤️ Trifecta Jackpot Club ♣️♣️

[@joannedevine2141]

You are so good. Now if I could just retain this info!

[@-------8019]

Seriously you just answered why I started having trimmers up to seizures like episodes, the swallowing issues and so many others that the doctors here in my country town have no clue..othet than my test are elevated like you said.....THANK YOU....

[@Zamiiz]

Ehlers Danlos is like the type of friend who shows up at your house with like 5 of 𝙩𝙝𝙚𝙞𝙧 friends

[@user-nz6si6md1z]

Yesterday I had a dream that I had mast cell activation. I clearly recall saying those words and telling someone that I had it. Then when I woke up irl my eyes were swollen and throat itchy from some kind of allergic reaction. And this morning I check my subscription box and you made this video! Haha, very weird but cool :D I have environmental allergies and tons of food allergies as well. Smells from foods can also give me allergic reactions. I've never been diagnosed with mast cell but I have been diagnosed already with tons of allergies and my rheumatologist suspects that I have EDS because I get constant subluxations everyday on every joint. Thankfully I'm able to adjust the joints back and sometimes with some help and it relieves some of the pain. I do a lot of physical therapy exercises daily, massage therapy, and clean diet to help relieve the pain.

[@christinadoherty3212]

+Adriana Wow thats a funny coincidence! Im sorry you are dealing with all of these issues. This is an especially bad time of year for allergies. I feel like I got hit by a bus myself. Hopefully we have a frost soon to kill off some of that ragweed!

[@Sheerahboom87]

Another tips from the expert and I admire your skills in sharing a very informative information .

[@allie4680]

Thank u very much for this! I watched this while I was seeking a MCAS diagnosis and now that I have one I have rewatched again!! You do a fabulous job explaining everything ☺️ I have reactions to every food I eat currently and we’re talking about maybe skipping to xolair injections or doing singular or cromolyn. Your video has really helped explain everything!

[@analarson2920]

Very informative. I have a collagen disease that is just like EDS, just lacks all the markers and I now treat it the same and focus a lot on gut health and what a big difference. My condition has not disappeared but there are less symptoms of less severe symptoms which is amazing for me, I respond terribly to meds. Can you add maybe some pics/diagrams and or photos of some of the things you speak of, it helps for us visual learners and you did such a great job with this video. I actually got tested for chemicals that was very helpful in getting rid of those chemicals. Low histamine diet was amazing too for me. Fresh food is better anyway it has high chi(life energy from its source) and higher nutritional value. I loved how you really nailed everything here to really help folks. A++++, keep sharing. I now do a low histamine bone broth chicken soup weely for my family and it helped heal my gut a lot. You are right, the catch 22 situation and which came first the chicken or the egg discussions in the medical community are frustrating, and again you are right, eating well, healthy lifestyle makes a great difference for all people and to help heal when ill or going thru like you did a lot of procedures and meds. I now follow Cultivate Beauty and Bec suffered badly with excema and learned that she had to heal herself naturally to get better, I now have gotten better too with lots of their cooking tips. Keep moving forward Christina you inspire and you educate, great stuff. Have you ever watched Chronically Jacqui or the Frey life? They too deal with chronic issues and are inspiring. Blessings and prayers!

[@christinadoherty3212]

+Ana Larson Thank you so much for taking the time to write such a detailed comment! I 100% believe that natural is the best way. I hate that im reliant on so many meds and feeds where I can’t control the ingredients, but someday I know that will be a thing of the past as I continue to get stronger. Thats a great idea with pictures, I think that really would be helpful. Ill try with my next video 😊 Yes! I do watch the Frey Life and Jacqui They are both amazing young women and so so sweet!

[@analarson2920]

I look forward to your videos.

[@lindaarmstrong4803]

Hey. I only want you to know that: I was diagnosed with an inherited autoimmune disease not much older than you are now. I was told I'd have to have a lung transplant to survive. I had that transplant 11 years ago and I'm here. I am talking to you because you have spoken right to me. The life of before illness is not there. But you are and I am

[@lindaarmstrong4803]

BTW, I can always use a good mask filter for my lungs. So I'm going to look for the one you've mentioned. I found you because my brothers girlfriend also has EDS. God bless you christina

[@texasdude1984]

From one mast cell patient to another, well done! 👏🏻 I find it strange that my mast cell symptoms surfaced first, and while I haven't been Dx'd with POTS officially, those symptoms are beginning to become more apparent. It's just strange how and when our symptoms become noticeable.

[@christinadoherty3212]

+Daniel West Agreed! I actually discovered my first trigger, chocolate, when I was in 3rd grade. Then later came strawberries. Then dairy as a preteen. But it wasn’t until everything else fell to pieces that the MCAS went a bit wild.

[@texasdude1984]

Christina Doherty everything falling to pieces is what I'm worried about after my Chiari and neck surgeries (date tbd). Diary is really starting to become an issue for me.

[@hoorayway8540]

This video is a wealth of knowledge. I'm going to do a video on MCAD this week.

[@gabrieleeditharnhold9144]

Doctors in Germany should watch this.

[@pkendlers]

Christina, you're awesome! :D

[@christinadoherty3212]

+Cheryl Coderre Thank you! 😊 You are too sweet!

[@Huldren1]

Thank you very much for this very succinct and informative explanation! I have not been diagnosed with MCAD; but exactly a year ago I had an almost immediate and horrible reaction to contrast given during a CT scan. Hives all over my body, blisters, itching like never before. I spent the following 7 mths first on huge doses of antihistamines, then steroids were added, steroid creme for whole body use, and finally cyclosporine (immuno suppressant) in doses, which affected my brain etc. I am an EDS'er and fear this will happen again. So I shall bookmark your video for future reference - also if any of my allergies/intolerances get worse. Thank you again

[@christinadoherty3212]

+Huldren1 Thank you! CT dye reactions are terrifying! The good news though is that they are actually extremely common. I was talking to the doctor about it after my scans and reaction and he said he was allergic too and then a few nurses piped in that they are too. They told me a lot of their patients have to be premedicated, not just their complex patients. So hopefully in your case its just a stand alone thing 💜 But its always something to keep at the back of your mind incase things change.

[@fables4564]

I have EDS and also have this too! I swear my body is like a 3 year old. Some days it behaves, all is good. Other days it's a little demon and I ask myself " could you just behave?" Lol. ( please don't have offense) I don't know many people with eds. But I'm curious, have you tried Hemp oil for your chronic pain? Or what would you suggest to control your chronic pain?

[@christinadoherty3212]

+Fables 456 I hear ya! I always say mine is like a crying baby that just won’t stop crying but can’t tell me what is wrong 😂 No offense taken, this is a space for honest conversations! I actually have been using hemp oil and it is a miracle for me. I still haven’t been brave enough to try it under my tongue due to reactions, but I run the oils into my knees and then have a balm I use on the nerve pain in my scar/neck/shoulders. Its the only thing that has ever worked this well, including narcotics and specially formulated creams! Besides the CBD I take a very small bit of tramadol and mostly treat with heat.

[@pamelaputerbaugh3161]

THANK YOU for this!!! I was finally diagnosed with MCAS by an immunologist who found a marked spike in one of my prostaglandins during a flare (but she has left her practice.) But I have a question for you, Christina - and any other MCAS folks. I've had 3 immunologists say I didn't have MCAS because they conducted a single 24-hr urine study without result - (and never told me to stop NSAIDS, anti-histamines, etc.). The diagnosing immuno said the 24-hr study was useless because the chemicals break down too quickly - and many labs don't keep the specimen cold enough while testing. Just curious - has anyone else heard this, too??

[@KakeKittyStyle]

I have heard that before and it's wrong. You should check out the video by Anne Maitland on the EDS Society website for more information. Are you taking an H2 Inhibitor?

[@poppycopper1]

Wow thank you that's beginning to make a lot of sense as I was gradually getting more and more intolerant alcohol and other foods and not realising why am the doctor saying to me you must've had a lot of it .peanuts is my big allergy and I get anaphylactic shock like a lot of people .I'm not saying that I have masscell but it makes a lot of sense to histamine is building up in these foods I can't thank you enough it's really help me and at the moment I'm having a horrendous asthma attack because my husband decided to use some white spirits because he's painting, help, on nebuliser while writing this lots of hugs to you Poppy xxx

[@christinadoherty3212]

+Poppy Chocky A lot of people have issues with histamines. Not just mast cell patients! Some people call it histamine intolerance and they often find the low histamine diets to be helpful. And that doesn’t mean you can’t cheat sometimes, because like you said, it can be a cumulative thing. So maybe save your histamines for what is really worth it? 💜

[@pninabenami7933]

My doctor thinks that at least for me everything is explained by Alpha Tryptasemia Syndrome .. I do not know if this can explain it in everyone .. I also realized that it is relatively new ..The same combination of problems .. Today I received the shipment of the masks ..I hope that thanks to the mask I will be able to reach the beach on Saturday .. It is right next to the house and I havent been there for nearly a year.

[@alura5376]

Main triggers for me: weather changes, biometric pressure changes, stress 🙄

[@elizabethbennet4849]

Hi! I’m really hoping someone can help me out. Can you have Mast Cell Activation Syndrome if you’re bloodwork shows low IgE levels? My situation is, I’ve become allergic to more and more things, but the scratch test and bloodwork (IgE) show me as not being allergic to anything. It’s very frustrating.

[@ariellel6123]

Hi based on my understanding of MCAS ige doesn’t always account for mcas so you could definitely still have it because there are other things that can cause it besides ige antibodies. I’m sorry I wish I knew how to explain it better. I understand what you mean currently hoping that my doctor will listen and send me to a immunologist to hopefully get diagnosed. Please advocate for yourself at your primary doctor! I wrote down my symptoms in a notebook and I made an appointment and presented it to my doctor. She’s referring me to a rheumatologist but I need an immunologist to get diagnosed based on my understanding. It’s also important to go to an immunologist who understands MCAS. I asked a mast cell activation syndrome Facebook group I’m a part of for any doctors that have dealt with MCAS in the state I reside. Good luck to you!

[@ReineDeLaSeine14]

I actually think my MCAS and my autoimmune disease are related too!

[@christinadoherty3212]

+ReineDeLaSeine14 I honestly have no doubt that they are. Especially because of the inflammatory response in both of them. Itll be very interesting to see what comes of all the research in the future 💕

[@NarrowPath_7]

Hi i think i may have this, i recently started swelling up and reacting to different foods, getting hives from blossoms, and latest issue tachycardia, bronchospasms and Multiple Chemical Sensitivity

[@BhaktiRosin108]

So if you have a latex allergy that was never a problem until breathing it in, if you started to have reactions to latex allergy foods that went away after a couple years then does that mean the allergy is gone?

[@kibbledd1]

I'm thinking of making a channel for collaboration on this topic--I've been dealing with some severe symptoms since 2016 and am tired of having the combo of solo-battling it out/researching, and being talked to about this disease from people who've been trying to figure it out themselves. Would anyone be interested in creating a network where we pass along research and the various experiments in experience we come across? Is there already something like that out there? Who else would like to take proactivity to the next level?

[@eniryuuoke7446]

There’s a website that is a community for people with MCAS (I don’t remember what it was called. It’s been about a year since I first saw it and I don’t use it myself so I haven’t visited it enough to remember the name) People talk with each other on there about physical/emotional issues they have with it, getting the diagnosis, frustrations trying to get people to understand the severity, frustrations with things about it that they still don’t understand... Your comment is 2 years old so maybe you already know this

[@vl2663]

@@eniryuuoke7446 hi what is the name of the website if you remember it?

[@estar1277]

Type in 'drbeen mcas'

[@TheVodacious1]

I am a hairstylist and have been tested for so many things... My throat has been swelling a LOT... This morning I woke up and was afraid I couldn't breathe... When I went to sleep my throat burned so bad and when I woke up I couldnt swallow. I took claritin and ibuprofen and I'm doing ok after that and a cup of coffee.... I do HORRIBLE at work. No one has been able to help me. I can't figure out which foods trigger me, which chemicals, etc. Im scared one day my throat will close, and I think I'll have to quit my job. I haven't been able to accurately describe my condition to a Dr to get the right testing done.... Any advice you could give would be SOOO helpful! I have "sensitive" skin, digestive issues, throat swelling, voice loss, lightheadedness, major headaches, stomach bloat and pain, edema, dry eyes etc... I don't even know if I'm on the right track, but I need help.

[@vl2663]

Hi how are you? I hope you were able to get some help

[@curtisbemis6640]

omg blue spruce pine trees and oranges send me strait into anaphylactic shock my throat swells and i struggle to breathe

[@journeytoabetterme7625]

I have eds and Mast cell activation syndrome and I didn't know about the reheating foods

[@ew5770]

where did you get your finger braces?

[@m.a.c.2503]

Thank you for the video! You mentioned something natural called karosetIn. Can you tell me the right spelling so that I can look it up? I had not heard of it before. I am one of those difficult cases that react to medications and a lot of the supplements that I've tried but I had not heard of the one you mentioned and would like to give it a shot depending on what it is derived from. Thanks so much!

[@NorseButterfly]

Stress started as my biggest trigger. It caused severe itching that started on top of my head, then went everywhere else. Now, I can't eat certain foods, I'm having issues swallowing, certain smells either cause breathing issues or instant headaches... but, the doctors here say I'm fine😡

[@christinadoherty3212]

+Chronic Butterfly Im sorry that you don’t feel believed by your doctors. This condition is such an uncharted territory for so many. I wish that your situation was uncommon. Hang in there! 💜

[@adamrodriguez5419]

I have to change mediations every 3-6 months because my body will get used to it and I will to cycle meds

[@Erynmassey]

I’m still learning about this, for individuals who have this disease do you find yourself needing a walker or a cane? My boyfriends sister has been diagnosed and is in need of using one or the other ever so often when she is in physically exhausting events. I just want to find ways I can help when I can

[@HandsFreeHelp]

Well Done!! Thank you

[@melloyellow5598]

Thank you! Soo Soo much!

[@NJSMKMMS]

Great video Christina, I'm on my second Immunologist and although she understands Dysautonomia and MCAD together I think the connective tissue disorder part might allude her, but I'm not sure because the symptomology of all 3 disorders atleast in my case seem to be indistinguishable from each other

[@NJSMKMMS]

As well as some of my autoimmune symptoms. It will be interested to see if anyone ever comes up with a definitive connection about atleast the 3. Until then I can't help but feel allot of us are left feeling pretty vunerable both to the next new development in medicine and our own bodies. It's most

[@NJSMKMMS]

likely better to try to be positive and hopeful about the future, but the truth, or my truth should I say is that things happen every day that frighten the life out of me. Not so much for me but I have teenage kids to think of and both touched with many of the same Dx's. Anyway............

[@christinadoherty3212]

+NJSMKMMS It really is so sad how many people are left suffering due to Drs who just don’t “get it.” The “good” thing about MCAD though is that a few of the best meds are OTC, but still, it makes such a difference to have a diagnosis and a doctor who understands the complexity of the whole situation

[@TheKayannh]

Excellent video. Thanks.

[@christinadoherty3212]

+TheKayannh 💜

[@lionheart5078]

Ive been diagnosed with eosinophilic esophagitis so I sometimes have problems with breathing and heartburn, I have also developed joint porblems specifically chronic tendonitis that is spreading everywhere. I also have ringing in my ears and since I was a kid I have that condition where you can write on my skin and it pops up really clearly. They've tested me for everything and I'm always negative, all autoimmune diseases negative. Does this sound like it could be a mast cell problem? Any advice would be great

[@Meemagolding]

Christina, I found this so interesting! I have had hives for 7 yrs. I’m currently in a huge outbreak. I have hives EVERYDAY . My daily meds are atarax 5 x daily and Zantac 4x daily. Also when needed Benadryl. I have had so many allergy test and came back negative! I get pressure hives everyday. This vlog triggered a memory. Years ago I went to a Rheumatoid Dr. he took 13 vials of blood. I remember him stating that my Mast cells had gone way up. I’m thinking about asking for a specific test. Any ideas? Today I was put in steroids and another stomach pill. I’m still all hives out! The only temporary relief is ice! HELP😢

[@km1234321]

Molly Golding How is it going a year later? I went on a low histamine diet and got much better, Im eating veggies, fish, shrimp, sweet potatoes and yuca.

[@sweetpeas8782]

One of my GPS didn't even know anything about eds. How could he ever diagnose anyone or even consider it if he didn't know it exists. I think I have this too, but I absolutely won't be seeing him about it.

[@christinadoherty3212]

+Sweet Peas Oh boy, sorry to hear that. My doctor growing up was similarly ignorant. It cost me a lot and honestly left a lot of emotional scars. I hope you can find the right doctor! Its such a terrible feeling to be shot down like that whether or not you end up having it. 💕

[@marthathompson5823]

Hi! I am Martha, and I have just begun watching your vlogs. I have EDS hyper mobile type. I am 49 years old. I have, luckily, never had to have any major joint surgeries, but I do get epidural spinal injections regularly for pain and sciatica. I also have severe asthma since I was a baby and POTS. I also have a pacemaker for what they call "sick sinus syndrome ". That is most of my chronic stuff, except for something with my intestines that mimics Chron's disease and wearing bilateral AFO's, which I'm sure you are familiar with. The thing that my pulmonologist can't figure out is why I get pneumonia and bronchitis so much, like 18 times in the last 3 years. I was wondering, while you were researching MAST cell activation syndromes, if you read anything about the disease causing pneumonia and bronchitis? They have run every test in the book, they claim, and can't figure it out. Any kind of insight would be much appreciated. I love your videos...sometimes I feel like you are speaking directly to me and my heart. I feel for you, because you are so much more affected than me. God bless you, and I will be keeping you in my thoughts and prayers. Thanks so much, Martha

[@christinadoherty3212]

+Martha Thompson Oh Martha, I am so sorry to hear about all your struggles. I can’t imagine having pneumonia that often on top of everything else. I do know some friends who are MCAS patients who have more issues with frequent airway infections. I can’t say that MCAS would be the cause, but I can see how maybe increased phlegm production from triggers could contribute or more likely an underlying primary immune deficiency causing both? MCAS is an immune condition. I know a number of people who have done A LOT better after adding in IVIG infusions. Have you had a full immune workup?

[@marthathompson5823]

Christina Doherty no, not any more than for allergy shots. Would an immunologist be the doctor to go to? Thanks so much for responding to me, it really means a lot. You, girl, have a lot more going on than I do. I only have mild back problems and don't have to wear ring splints, etc. I really hope that your previous back surgery is your last!

[@Jerry-zx7rf]

wonder if anyone tried high dose vitamin d 50,000 iu a week for 2 months and felt better and reaction went away as long as u continue to take

[@XXthelivingdead]

I get reactions like this with alot of food,things,get rashes and tachycardia and dizziness while sitting/laying down when i get a reaction but it doesn't happen every time i eat a food that's made it happen before,sometimes it happens,sometimes it doesn't happen. pretty strange to me i have no idea whats going on with me anymore hahah.

[@XXthelivingdead]

I hope so too,i have no idea if i have mcad/mcas though. A few people have mentioned it to me but i still need to look into it all >…< hope you are doing okay today. 💖

[@vl2663]

Hi how are you doing now?

[@sam.4896]

My mom has the Mast Cell Activation Syndrome.

[@Dan0rioN]

Very beautiful

[@Bespeon]

Does anyone know what to do to get help for possible mcas in the UK? My doctor scoffed at my saying I thought I had eds, but I do have generalised joint hypermobility syndrome and seem to be allergic to everything. I just don't know how to bring it up without them thinking I'm complaining again.

[@christinadoherty3212]

+Beth Luna I hope you can get some answers and help with that. I wish I could help!

[@29Bodhisattva]

Testing recently became available on the NHS at Sheffield PRU for those who may have this condition. You can learn more at the website 'Mast Cell Action'.

[@gjop-xm2xe]

How do you find out which you have

[@schhhhmokinitup]

Does anyone know what type of doctor to see if you suspect MCAS??

[@LymeStealsGodHeals]

An immunologist is usually the best option, but it would have to be one who’s knowledgeable about MCAS. I hope you’ve found someone between the time you wrote this, and now!

[@gjop-xm2xe]

Do you where a med. braclet

[@mike212916]

Hi, this is the first video I've watched of yours but I was wondering if you went for SIBO testing? When I was younger I used to eat fast food 3 times a day because I wouldnt get fat. I believe my issue could be caused my SIBO in my gut, or a leaky gut. I feel like it was something I did to give me this mast cell problem because i never had it as a kid. My triggers are all very similar to other mast cell suffers, but symptoms are very strange. When im suffering I feel waves of ill feeling surging through my body. You know when you get the chills that start from your spine and radiate through your entire body, well its kinda like that feeling but an ill feeling, and later on I get sweaty, like my body is trying to detox something. Some foods I can tolerate one day, then I cant the next. Sometimes the hot weather doesnt bother me, sometimes it does. usually food is what puts me over the edge that makes me react to mild reacting foods/temperates. What sucks is when I eat that "bad food" it takes 1-2 days to start feeling the effects. so its hard for me to pinpoint the problem foods. It just feels like every month im taking out another food. It sucks because it feels like its getting worse.

[@xirisx1988]

I thought you stopped with the xolair?

[@christinadoherty3212]

+xirisx1988 I did just stop. But I do plan on going back. For now Im just really reaction sensitive and we think its really my body reacting to having injections in general. Not really the medication. Time will tell. But when I do my nightly blood thinner injections or even flush my port I notice a little flare up. So it seems to be more the act of getting them that is the issue

[@beccaemily5171]

can you have mast cell is you dont have eds? like is it common?

[@NJSMKMMS]

Yes absolutely.

[@christinadoherty3212]

+BeccaEmily For sure! Thats what I quickly glazed over with “idiopathic MCAS.” It basically just means that it is a stand alone diagnosis. That is assuming you don’t have a clonal version like Mastocytosis which is definitely its own condition. 💜

[@CC-qf6zz]

It’s her voice like for real or is it a joke

[@spoonietimelordy]

Wait, I thought this was just EDS symptoms, how to make the difference since all of this are also list in the EDS symptoms ?

[@supertacokitty1996]

💗💗💗💗♥️❕

[@christinadoherty3212]

+Hannah Stevenon 😘