It’s great to have access to information like this, but it’s so frustrating trying to find a doctor who will listen and educate themself so they can truly help you get better. The reason doctors don’t see patients until they are debilitated by disease is because you are continually brushed off until you are really sick and they can’t ignore it any longer. It took me 20 years to be diagnosed with fibromyalgia and when I was finally diagnosed was because I had researched and presented it to my doctor and said I’m not leaving until this is figured out.
Good for you, i'm in the middle of that myself, i told my pa about this article yesterday and he tried to correct me, like i didn't know what i was talking about
I suspect I developed this I want to anaphylactic shock and was i the hospital for a week almost died at 39. I was “fine” until the vancomycin liberated it.
@@imaginarylife68 sorry. You can have mine. Lol. I won't take that crap. The doctors can never consider that maybe they have a gap in their knowledge. No, you must be on drugs, or crazy or "stressed out." Those have been my "dignoses"...
I am an RN with MCAD. I am a multiple rebound anaphylactic to insect stings. I cannot get the ED staff to understand MCAD. This is by far the best presentation that I have seen. I shared this with the amazing paramedics - EMTs that kept me alive.
This video is fantastic! Thank you for sharing this presentation. I am grateful to be able to watch this video on RUclips especially after everything I’ve been through. Phew! I hope doctors start to catch on soon. The ignorance and lack of awareness surrounding this disease is astounding. Holding the power to misdiagnose a patient with a disease they don’t have and prescribed medication for, can be life threatening and life altering. It took more than a decade. There is an immediate need for action that requires all medical professionals (especially those who actively practice medicine) to continue their education beyond medical school. Education enhances awareness and awareness is essential to the future of medicine. Thank you for your time and contribution to educating others about (MCAS) Mast Cell Activation Syndrome. 🍀
Wow so creative, smart, and a true advocate for patients that have been misdiagnosed and not validated. I was misdiagnosed, finally after 5 years of pure misery I’m on treatment s.
Wow, as a MCAS person for the last 12 years with anaphylaxis, chemical sensitivities, histamine intolerance, IBS blah blah..and a tryptase of 4, (tested with Brigham &Women’s Mastocytosis Dept about 10 yrs ago where I did not meet WHO criteria by 1 point for a MCAS diagnosis 😂 so my diagnosis was fibro which I also have) I have to say this is the BEST info I have come across. I am in Florida and wanted to see an allergist a couple years ago at UF HEALTH who dealt with MCAS, to get an appt I had to have a “positive tryptase” which, as far as I know is a 20 though some might accept as low as a 12. THANK YOU for the new info! Now to find that informed doctor..lol, probably impossible. I only discovered I have hyper mobility a few weeks ago when I did a questionnaire with 23andMe and it asked me about 10 hyper mobile positions and I had 7. Not one Dr has asked me about that. Ever.
Those with MCAS has normal tryptase level like you around 4 ng/ml, Those with Hereditary alpha-tryptasemia (HαT) has a high baseline tryptase level (over 8 ng/ml or over 11 ng/ml, depending on the criteria used). A baseline serum tryptase level of greater than 20 ng/ml is a minor diagnostic criterion for systemic mastocytosis.
Working on diagnosis myself. This all sounded familiar. I’m fortunate to live in an area where there is access to experts that are getting me closer to understanding what is going on. Two specialist believe it’s mast cell activation. I’m grateful for this video.
When I was in my 20's (I'm now 59) a Doctor here in Lewistown, MT where I live, basically told me I was nuts, put me on antidepressants and sent me on my way. I had pneumonia in 7th grade, and contracted the Chicken Pox in my late 20's. I had severe Endometriosis and had a complete Hysterectomy at the age of 31. I was diagnosed 2 years ago with the rare Mast Cell Disease called Telangietasia Macularis Eruptiva Perstans via a skin biopsy, from a rash that would not go away due to chemicals in some hair dye. It's been pure hell throughout the years. I ALWAYS have sores on my head, in my ears and up my nose. I have several Autoimmune issues as well, RA, Osteoarthritis, Crohn's/IBS and Sjogrens, sleep disorder, ringing in my ears, the list goes on and on. I have been out to Mayo Clinic in Rochester twice, they were not much help - because, at the time I was there apparently my Tryptase levels were "fairly low" so they said they would just monitor me. Any chance this wonderful Doctor could help me?
You have TMEP so that is Mastocytosis. Cutaneous Mastocytosis will almost always turn to systemic Mastocytosis so you need to find a good doctor who treats Mastocytosis and not MCAS. Very closely related as they present similarly and are both mast cell disorders but the silver lining for you is more doctors are aware of and treat Mastocytosis.
@@becksbitofblue That's just as idiotic as telling someone to try the vegan diet or the Paleo diet. As if your diet cult will cure every disease. Shame on you.
MCAS is constantly pulling the rug from under my feet , although I recently had an interesting conversation with a chemical food engineer, at the time I was literally at the end of my tether with MCAS . I discovered from this conversation that milk now has a tree bark extract that helps stabilise the milk proteins , from that moment I gave up milk and cheese , I was able to give up the beta blockers and blood pressure tablets , there was no need to visit the cardiologist. I am currently surviving on eggs and fries , if I deviate from these 2 food sources, I am looking at a 3 week recovery. I have found the following foods are a massive trigger . Fruits, veg,sauces,dairy,gluten,juice,wine,sulphites,any nuts with a skin, spices,coffee,teas. Environmental triggers, cement, plaster,kitchen cleaner,Persian rugs, raffia rugs, basket material, HITT So Eggs and fries it is 😷🤒
Wow that's amazing. Me and my daughter I'm pretty sure are allergic to almost all the food stuff you talked of but to start thinking about cleaning products and other stuff is freaking me but I suspect strongly they are problematic too
L King .. my original comment was one year ago .. during the lockdown and with very few activities and travel eating eggs was very frustrating so I tried introducing some organic meats , ryvita etc .. slowly my digestive system gave up and good g-d did I realise that my body will not thrive on anything but eggs and intermittent fasting which absolutely stops bingeing.. try that and making a conscious effort to make your environment as stress free and relaxing as possible .. as all go hand in hand if there’s an inbalance ❤️
Very widespread problem that is worsening that very, very few doctors know anything about. The more Docs like Ann Maitland do talks on this, the better we have a chance with other doctors. Bless her for her work.
This is great, thank you so much. How can we change our environment though? From what I have been reading, those people who have been dealing MCAS are so afraid to go out to avoid triggers.
Very good presentation. I wish I could go to NY to see her for my MCAS. After an episode of MCAS and the ER visit my doctor did test and my tryptase level was 17 but he still said it was hard to diagnose. I go into anaphylactic when it hits me. The only tigger I can put together is the change in temperature...mostly the cold. It is not what I eat.
(7:52) 'in order to restore tolerance... so thaen you can then develop tolerance to... (x,y,z)... even temperature. I spend too much anxiety on how windy cold or wet it is outside I can't even stand a mild summer wind... Raynaud's and so many ticks on the MCA list... I'm just learning what this is now, from this video. After years of being not given one answer... (10:36) the goal is... thanks for this, it's a godsend
After a trip to the ER for an injection to overcome another allergic reaction, I started digging into what I had ingested that caused the reaction. It is thru the internet that I have come to the realization that I've been dealing with MCAS my whole life, and that my father also had the same issues. If the symptoms were a checklist, I've checked off most of the boxes. Once I started looking at my kitchen I realized that my diet and life style were the blame for the histamine issue.
I wonder if there are any allergists this good in Florida. HA , HA, HA, HA, HA , HA, HA ,HA, HA ,HA ,HA ,HA. I live in Florida. A useful doctor in Florida. I'm rolling on the floor laughing. Good Luck.
I currently have every symptom from chronic hives and welts for 1.5 year headaches, stomach/gut issues, mental issues, menstral issues, the list goes on
So much valuable information. Wow! I will certainly be coming back to rewatch this segment. I believe I have MCAS after learning more and watching this presentation. The “dots” were there, AI conditions; skin conditions including “allergic drug reaction” and I was on a generic thyroid medication; changes in severity of sinus allergies and now 7 years of Anosmia. The “dots” were there; I just didn’t have anyone else helping me connect those dots. Thank you again. 🤓🙏🏽🌻
Great lecture, thanks for the upload. I live in Ontario and have been lucky enough to find Dr Peter Vadas at St Mikes in Toronto. If you are suffering from MCAS or MCAD and need help i recommend Dr Vadas.
Bless and Bravo Doctor!!! Wishing i would have met you in my journey way before ... would’ve been so much better. But better late than never to learn what caused this hell and state I’m in...., now if I can just figure out how to get insurance for all this or a miracle. Much love and gratitude!!!
It's great to have all this info, though it's somewhat shocking, but if I had seen this at the beginning when I first learned of this problem, it probably would have scared me to death. However, I understand the need to touch all the bases since MCAS can cause so many problems. I grew up in So Cal and had only one possible allergy, to penicillin. Definintely no airborne allergies. Then about 28 years ago I moved to Middle TN. Once arriving, I had more than one person ask me if I had allergies, and my response was no. Then their response would be, Give it four or five years. Well, I didn't accept that. But I'm disappointed to say they were right. Apparently Middle TN is in a big geographic bowl that covers a large part of the south, and pollen, etc. collects in it. Unfortunately, when I started having problems, I didn't even realize it was allergies because I was getting severe headaches that would last for days. Being headache prone since adulthood anyway, I thought the worsening was just an extension of the problem, complicated by the stress of my job. I can remember calling my mom in CA and telling her, besides the headaches, I felt like I was being poisoned. At this point, I don't even recall how I came to know the severe headaches, even migraines, were allergy related, but I did, and for several years Allegra-D, etc. helped greatly. However, as the years have passed, "allergies" became year round, the Allegra/Claratin (MUST have prescription for sudafed) at times didn't seem to be helping much. During those times I would take 24-hr Allegra-D every 12 hours just to function, but still felt horrible. Not only worse headaches, but tachycardia (constant), which I attirbuted to a clash between the antihistamine and mild hypothyroidism. Along with that feeling, again, of feeling like I was being poisoned. Anacin ( aspirin with caffeine) was the only thing that worked for my regular headaches, so I was shoveling Anacin and tearing up my stomach and esophagus. Oh, yeah, and tinnitus. Loud, loud tinnitus. Long story longer, about a week ago I saw my first video about histamine intolerance on RUclips -- not scary like this one -- and realized I had symptoms they were discussing. One of the symptoms I was most concerned about was the tachycardia. Not only was I concerned about my heart, but it limited my exertion levels. I have only Medicare, and I don't make a lot of money, so the extensive tests and multiple doctors that Dr. Maitland is talking about would have freaked me out and possibly made me feel hopeless. But the other video talked about Quercitin, DAO, etc., so I decided to start there. Ordered some Quercitin from a vitamin manufacturer I trust, ordered DAO, and that's all I've done so far. Oh, and I have avoided some foods that have histamines, but I intend to get deeper into that too. Finally, the story to date, after taking the Quercitin and DAO for only within a couple of days, I already feet much better. I really had no idea how much the tachycardia was affecting me overall, until my heart rate FINALLY came down. For me, that IS the confirmation that all these years I've been suffering from histamine intolerance, as well as the fact the tinnitus has diminished by about 95 percent. My heart rate actually responded in just a couple of days. When I'm lying down, nicely relaxed, my heart rate actually falls into the 70s. Hallelujah for RUclips, and all the wonderful people who contribute in an effort to help others. Oh, and I also couldn't figure out why so often my thighs would ache -- even waking up that way. I'm looking forward to making as many adjustments as possible, removing as many insults to my body as possible, and hopefully continuing to improve. So, I'm sorry to run on like this, but I thought I'd share some of what I've been through in the hope it might help someone else.
Hi Laurie, I am also having histamine problems for 4 years and food triggers it daily! Living in a foggy heard all day long is not LIVING LIFE at all. But I wanted to try DAO and Querctin as I heard it might help me. Please tell me the name brand and where to get them? I live in California so I know I could buy them online or in stores? Thank you very much in advance. Hope you continue to recover! 🌷
@@chantellucky4565 it's been six months, i hope you're well. i've been taking NaturDAO, also some superoxide dysmutase. black caraway [nigella sativa] seems to help a lot. i think i feel capable of installing some sort of aero/hydroponic system so i can sprout for DAO. i'm getting a lot of ideas from reddit forums like r/histamineintolerance and r/sprouting.
@@lorenrealname1326 Hi Loren, your message made my day !!! I appreciate your very helpful info. I looked up NaturDAO on Amazon and thinking to purchase it to see if it helps me. I still have bad inflammation especially after each meal and worsen as day’s end in the evening. No conventional doctors listen or understand what MCAS is!!! Very frustrating! I basically gave up on them and tried to help myself! If there is new info you can share to help me heal a little, I will be so grateful! Thanks again for writing / following up with me!! Have a wonderful New Year 2023!!! Chantelle from California
@@chantellucky4565 well, the nigella sativa / black caraway is GRAS, i've heard it's sometimes found on "everything bagels," i got some at in import store in Tucson many years ago. it seems to have many interesting compounds but most notably thymoquinone, which seems to bind to a lot of proteins, including histamine. i just pour some hot water over a teaspoon of them and eat them a few times a day, along with DAO- and histamine-conscious dieting. i've also heard of people taking entire grams of vitamin C, or multiple grams a day. this has given me some kidney pain so i'm doing some kidney-conscious stuff; applesauce, lemon water, water, and more water. kidneys do a lot of the work in cleaning up HIT, take care of them. superoxide dysmutase is to clear up free radicals, it's probably a good idea but it's expensive even for the non-vegan kind. i don't recall if this video covered dark-sprouting for DAO, or using butyrate [a fiber found in legumes] to mediate intestinal tight junctions [of particular note to fellow celiacs, but it's not exclusive to us]... i have so much to learn still. there are many people with relative expertise on the subreddits. best of luck to you and take care. edit: apologies, i'm a newbie to HIT and i know very little about MCAS in particular.
@@lorenrealname1326 oh mine, Loren, you have tones of useful information I can sure to follow or at the least must try!! I live in So-Cal near Burbank, I have been searching for some herb shops here to see if I could come across some good herbs.
I have systemic mastocytosis as diagnosed by 48 typtase (sustained testing results over years) and 1500ml eosinophils and finally a bone marrow biopsy. Interestingly enough the longest mast cell flare up I have ever endured was caused by the physicians invasion of my bone marrow for the biopsy. Its been 20 days of hell. Of course now to calm the mast cells, avoiding everything is not possible so I'm sort of stuck in a mast cell feedback loop. I have been tested for and have mold and ragweed allergies and its prime season for both. I'm curious if you've seen any positive response with DAO. Ive been seeing some reporting in my support group that its an enzyme in the body which is overburdened by histamine and supplementing helps reduce symptoms. My symptoms do not involve the skin at all, but instead are similar to extreme flu. Respiratory congestion, body aches, joint and bone pain, headaches etc. Also of note, there's tons of research thanks to COVID that shows melatonin has promise in reducing cytokine storms and is a very safe supplement over a wide range of doses in humans. Of course its anecdotal but I take 50mg of melatonin per day and its been working wonders for me.
Ma’am thank you so much, I have been so sick for so long and every time I think I know what it is I keep getting told no that isn’t it. Idk how I came across this but it might be the issue and I am going to ask the Drs about it. Thank you so much
What about for people with Systemic Mastocytosis AND hEDS? My baseline tryptase is always extremely high on 180’s now. My b12 is always extremely high as well, not sure why it’s always above 1500. I was just diagnosed yesterday with hEDS.
What kind of doctor can help put all these pieces together? My oldest and I need to see if this is us and my second child has had a severe case of hives recently.
Hi Jeniver, someone who specializes in allergy and immunology should be able to help. You can check our healthcare professionals directory to find those who list this speciality: www.ehlers-danlos.com/healthcare-professionals-directory/
Sore throat, sinuses pressure, stomach cramps, fatigue, frequent urination, headaches, etc. I was tested for throat infection, urinary tract infection, flu, chest x-ray, etc nothing, they're all negative. Could it be mast cell activation syndrome? Could it be allergies? Could it be histamine intolerance? Anyone had the same symptoms? Please help. Every time I went to the doctor he prescribed me some vitamin D, because I had low levels of vitamin D. Lately I have been taking over the counter vitamin D3, but I have these symptoms for about a few weeks now. I just came across this video doing my own research, hoping desperately to find some answers. I had the same symptoms many times before. They come and go more than e a few times throughout the year.
Dont know if have this. really would like to know how to better able to deal with cold and heat!! I freeze leftovers and when eat onions (ginger also seems to help me ) in meal, seems to help, also keeping calm or itch real bad in the heat.
Does anyone here know if it’s possible to have mild MCAS? All mild: -Itching, -food sensitivity -Sour stomach -low grade Headache -Blurry vision -Bone pain(severe, but I have hEDS) -GI Distress -Sometimes mild hives -allergic-like reactions with zero testing showing allergies -OI (orthostatic hypotension and former POTS that went away) -smell and chemical smell sensitivity -generally feel unwell from most and these symptoms ^^^ However, none of this is serious enough and I’m going, no anaphylaxis. I have an idiopathic DX for MCAS but he did not run labs and seeing an allergist it VERY hard where I live. I feel much better if I avoid most foods and triggering situations but since it’s mild I don’t bother and experience the symptoms on and off I’m just wondering if there’s anyone else like me out there, or not. Wondering If MCAS can even BE “mild”?
У меня были все мягкие симптомы много лет, но в это году переболела свиным гриппом и начались реакции с анафилаксией на аспирин, витамины, моющие средства. Врачи все равно не знают о диагнозе тучных клеток😢😢
So excellent! (It took my daughter almost 4 decades to be properly diagnosed!) BTW: In my 40's I had scleroderma, a collagen-vascular disease which I believe is also linked to mast cell disfunction. It took me almost a year to get a correct diagnosis.
I have been suffering from severe skin itching over the entire body. I suspect that recent weight loss and the release of cytokines from fat cells might be involved but I haven't verified this. I live in San Angelo, Texas. Can you recommend a doctor who can help me with the problem? By the way a recent test for thyroid antibodies found a slight elevation in thyroid peroxidase antibodies. A thyroid panel found T3 was slightly elevated.
I wonder if topical steroids cream can cause mast cell activation? My doctor's advice was to apply these creams for years, now only the palms of my hands and feet aren't red or pruritus as is the other 95%of my body. Dermatologist seem to the worse at denying MCAS or that TOPICAL CREAMS ARE DANGEROUS!!
@@imaginarylife68 Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Paperback - April 20, 2020
Fix the criteria there are individuals getting slashed because they dont meet it all but still need care teenagers change rapidly the day after we got slashed started having thumb pain in the joint lasted for days. Then it was elbows again then knee then back then something else and we dont know if has pots or this. Been over 3years of constant appmts and new specialists
I wish I could get my kids and I to this doctor. I can’t get our regular GP to understand, and it’s just a run around to every specialist that also doesn’t understand. Our intergrative dr believes this is real for us, but isn’t super educated in it. All of my kids have had Lyme....and I can’t help but feeling that and genetics hasn’t helped.
Why can't every doctor be like you . Having to fight and edcuate the medical community. I'm sending to both my allergy doctors I have severe Mast Cell activation disorder. I deal with anaphylaxis almost daily . I have Dysautonomia and POTS, GASTROPARESIS, CYCLIC VOMITING SYNDROME. POTS.
I need help these doctors don't believe what I'm going through!! No matter what I eat I start getting phlegm in my throat in my trach my nose I started getting so so sleepy like I'm in Drugs. I have to go to sleep!! My trach hurts I take all kinds of medicine trying to clear my chest my throat . I get wheezing it's so terrible I need help I like in NYC I need help this is an every day event 😥😥
All Dr.'s should be required to watch this video. I had mild issues as a child, at 21 after a car accident was diagnosed as hypothyroid, at 32 after my husband died within months was diagnosed with Raynauds, Sojrens, arthritis and Celiac, at 45 had a dissected aorta (Marfan's) and for the last 7 years have had non-stop crazy issues from keloids to anaphylaxis to scary heart episodes and more autoimmune issues including colitis...not a single doctor put it all together, even after going to the Mayo Clinic. But one day I watched a cooking video and the host mentioned he got sick from eating a meal from a slow cooker because of his histamine intolerance, (I have this issue as well as not being able to eat leftovers). After a few days of googling I went to my local practitioner who then said it looks like MCAS. But that was weeks ago and finding a doctor to treat it and do the testing has been a real challenge. Even the appointment line at the Mayo Clinic in MN told me they do not have any doctors to treat MCAS. Why is this so hard to get diagnosed and treated, seems if they are willing to call me a train wreck and others say I am "wired differently", they would realize there is an issue causing it. I am currently in MN, can anyone recommend a doctor in the area? or even in the US that is taking patients with this?
far to long winded and hard to comprehend , far to fast spoken and hard to hear what she is saying for someone with chronic fatigue and cognitive impairment
Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Paperback - April 20, 2020
Pardon, it is a complicated subject to sum up a decade of observations in less than an hour, on a cell population long ignored by the medical community; but you can start and stop the video; there are also other specialists that may work better for you- consider Theohares Theoharides, Cem Akin, Mariana Castells. Also you can go to the Mastocytosis Society, TMSforacure.org
It’s great to have access to information like this, but it’s so frustrating trying to find a doctor who will listen and educate themself so they can truly help you get better. The reason doctors don’t see patients until they are debilitated by disease is because you are continually brushed off until you are really sick and they can’t ignore it any longer. It took me 20 years to be diagnosed with fibromyalgia and when I was finally diagnosed was because I had researched and presented it to my doctor and said I’m not leaving until this is figured out.
Good for you, i'm in the middle of that myself, i told my pa about this article yesterday and he tried to correct me, like i didn't know what i was talking about
Brilliant work. Everyone in the medical profession needs to learn about HSD, EDS and MCAS. Medical 'gaslighting' is very real and needs to end.
Ima Zebra 🦓 half Black half White that’s how I figured out my mpd my “mom” was a Virgo GEMINI MOON
I suspect I developed this I want to anaphylactic shock and was i the hospital for a week almost died at 39. I was “fine” until the vancomycin liberated it.
Tell me about it. I keep getting told I should be patient with doctors. I would if they wouldnt invalidate me and give me xanax.
@@SereneDJ I don't even get xanax
@@imaginarylife68 sorry. You can have mine. Lol. I won't take that crap.
The doctors can never consider that maybe they have a gap in their knowledge. No, you must be on drugs, or crazy or "stressed out." Those have been my "dignoses"...
I am an RN with MCAD. I am a multiple rebound anaphylactic to insect stings. I cannot get the ED staff to understand MCAD. This is by far the best presentation that I have seen. I shared this with the amazing paramedics - EMTs that kept me alive.
Around 21, an audience member sneezed, and Dr Maitland said "God bless you" and then carried on. That's cool.
She's doing the lord's work this doc. She did a fantastic presentation. Honestly, even better than Dr. Afrin.
She does a great job of presenting things in layman terms. I am medical. This is understandable to everyone.
This video is fantastic! Thank you for sharing this presentation. I am grateful to be able to watch this video on RUclips especially after everything I’ve been through. Phew! I hope doctors start to catch on soon.
The ignorance and lack of awareness surrounding this disease is astounding. Holding the power to misdiagnose a patient with a disease they don’t have and prescribed medication for, can be life threatening and life altering. It took more than a decade.
There is an immediate need for action that requires all medical professionals (especially those who actively practice medicine) to continue their education beyond medical school.
Education enhances awareness and awareness is essential to the future of medicine.
Thank you for your time and contribution to educating others about (MCAS) Mast Cell Activation Syndrome. 🍀
Wow so creative, smart, and a true advocate for patients that have been misdiagnosed and not validated. I was misdiagnosed, finally after 5 years of pure misery I’m on treatment s.
What were you originally diagnosed with?
What's the treatment?
What was it?
Please tell me how you kept your sanity because I’m crying and depressed over having this.
Don’t you love how people say now I’m on treatment and doing better and not care to share what that treatment is??
Love Dr. Maitland for her interest, knowledge, and presentations on MCAS and EDS.
Wow, as a MCAS person for the last 12 years with anaphylaxis, chemical sensitivities, histamine intolerance, IBS blah blah..and a tryptase of 4, (tested with Brigham &Women’s Mastocytosis Dept about 10 yrs ago where I did not meet WHO criteria by 1 point for a MCAS diagnosis 😂 so my diagnosis was fibro which I also have) I have to say this is the BEST info I have come across. I am in Florida and wanted to see an allergist a couple years ago at UF HEALTH who dealt with MCAS, to get an appt I had to have a “positive tryptase” which, as far as I know is a 20 though some might accept as low as a 12. THANK YOU for the new info! Now to find that informed doctor..lol, probably impossible. I only discovered I have hyper mobility a few weeks ago when I did a questionnaire with 23andMe and it asked me about 10 hyper mobile positions and I had 7. Not one Dr has asked me about that. Ever.
Those with MCAS has normal tryptase level like you around 4 ng/ml,
Those with Hereditary alpha-tryptasemia (HαT) has a high baseline tryptase level (over 8 ng/ml or over 11 ng/ml, depending on the criteria used).
A baseline serum tryptase level of greater than 20 ng/ml is a minor diagnostic criterion for systemic mastocytosis.
Thank you so much for your diligence to educate we the patient 🙏
Working on diagnosis myself. This all sounded familiar. I’m fortunate to live in an area where there is access to experts that are getting me closer to understanding what is going on. Two specialist believe it’s mast cell activation. I’m grateful for this video.
Another excellent presentation related to discovering the basis for hard to define health issues.
This is the most informative video I've seen. Thank you Ann Maitland. I would send it to my doctor, if I thought she would read it.
Thank you. I appreciate all your knowledge, clear & concise explanation of MCAS. I am currently being treated by Dr Trevino here in Clearwater FL
When I was in my 20's (I'm now 59) a Doctor here in Lewistown, MT where I live, basically told me I was nuts, put me on antidepressants and sent me on my way. I had pneumonia in 7th grade, and contracted the Chicken Pox in my late 20's. I had severe Endometriosis and had a complete Hysterectomy at the age of 31. I was diagnosed 2 years ago with the rare Mast Cell Disease called Telangietasia Macularis Eruptiva Perstans via a skin biopsy, from a rash that would not go away due to chemicals in some hair dye. It's been pure hell throughout the years. I ALWAYS have sores on my head, in my ears and up my nose. I have several Autoimmune issues as well, RA, Osteoarthritis, Crohn's/IBS and Sjogrens, sleep disorder, ringing in my ears, the list goes on and on. I have been out to Mayo Clinic in Rochester twice, they were not much help - because, at the time I was there apparently my Tryptase levels were "fairly low" so they said they would just monitor me. Any chance this wonderful Doctor could help me?
You have TMEP so that is Mastocytosis. Cutaneous Mastocytosis will almost always turn to systemic Mastocytosis so you need to find a good doctor who treats Mastocytosis and not MCAS. Very closely related as they present similarly and are both mast cell disorders but the silver lining for you is more doctors are aware of and treat Mastocytosis.
Try the carnivore diet
@@becksbitofblue That's just as idiotic as telling someone to try the vegan diet or the Paleo diet. As if your diet cult will cure every disease. Shame on you.
MCAS is constantly pulling the rug from under my feet , although I recently had an interesting conversation with a chemical food engineer, at the time I was literally at the end of my tether with MCAS .
I discovered from this conversation that milk now has a tree bark extract that helps stabilise the milk proteins , from that moment I gave up milk and cheese , I was able to give up the beta blockers and blood pressure tablets , there was no need to visit the cardiologist.
I am currently surviving on eggs and fries , if I deviate from these 2 food sources, I am looking at a 3 week recovery.
I have found the following foods are a massive trigger . Fruits, veg,sauces,dairy,gluten,juice,wine,sulphites,any nuts with a skin, spices,coffee,teas.
Environmental triggers, cement, plaster,kitchen cleaner,Persian rugs, raffia rugs, basket material, HITT
So Eggs and fries it is 😷🤒
Wow that's amazing. Me and my daughter I'm pretty sure are allergic to almost all the food stuff you talked of but to start thinking about cleaning products and other stuff is freaking me but I suspect strongly they are problematic too
Try beef.
Please look into Medical Medium for real healing.
L King .. my original comment was one year ago .. during the lockdown and with very few activities and travel eating eggs was very frustrating so I tried introducing some organic meats , ryvita etc .. slowly my digestive system gave up and good g-d did I realise that my body will not thrive on anything but eggs and intermittent fasting which absolutely stops bingeing.. try that and making a conscious effort to make your environment as stress free and relaxing as possible .. as all go hand in hand if there’s an inbalance ❤️
Yolo Heheh both myself and daughter too , it’s so heartbreaking ❤️❤️
Very widespread problem that is worsening that very, very few doctors know anything about. The more Docs like Ann Maitland do talks on this, the better we have a chance with other doctors. Bless her for her work.
she is BRILLIANT!
This is great, thank you so much. How can we change our environment though? From what I have been reading, those people who have been dealing MCAS are so afraid to go out to avoid triggers.
Very good presentation. I wish I could go to NY to see her for my MCAS. After an episode of MCAS and the ER visit my doctor did test and my tryptase level was 17 but he still said it was hard to diagnose. I go into anaphylactic when it hits me. The only tigger I can put together is the change in temperature...mostly the cold. It is not what I eat.
Where in NY is she based? I really hope you have been able to find help! I’m really trying to it hasn’t been easy.
I too have this happen with heat instead of cold temperatures. I can’t be in the heat or sun at all or I go into an allergic reaction.
@@Anna_Beth_ me too. Any luck?
(7:52) 'in order to restore tolerance... so thaen you can then develop tolerance to... (x,y,z)... even temperature. I spend too much anxiety on how windy cold or wet it is outside I can't even stand a mild summer wind... Raynaud's and so many ticks on the MCA list... I'm just learning what this is now, from this video. After years of being not given one answer... (10:36) the goal is...
thanks for this, it's a godsend
After a trip to the ER for an injection to overcome another allergic reaction, I started digging into what I had ingested that caused the reaction. It is thru the internet that I have come to the realization that I've been dealing with MCAS my whole life, and that my father also had the same issues. If the symptoms were a checklist, I've checked off most of the boxes. Once I started looking at my kitchen I realized that my diet and life style were the blame for the histamine issue.
Go carnivore diet saved me
I wonder if there are any allergists this good in Florida. Dr. Maitland is obviously one of the best in the country.
I wonder if there are any allergists this good in Florida. HA , HA, HA, HA, HA , HA,
HA ,HA, HA ,HA ,HA ,HA. I live in Florida. A useful doctor in Florida. I'm rolling on the floor laughing. Good Luck.
I currently have every symptom from chronic hives and welts for 1.5 year headaches, stomach/gut issues, mental issues, menstral issues, the list goes on
oh yeah nasal and asthma issues as well.
So much valuable information. Wow!
I will certainly be coming back to rewatch this segment. I believe I have MCAS after learning more and watching this presentation. The “dots” were there, AI conditions; skin conditions including “allergic drug reaction” and I was on a generic thyroid medication; changes in severity of sinus allergies and now 7 years of Anosmia. The “dots” were there; I just didn’t have anyone else helping me connect those dots.
Thank you again. 🤓🙏🏽🌻
Great lecture, thanks for the upload. I live in Ontario and have been lucky enough to find Dr Peter Vadas at St Mikes in Toronto. If you are suffering from MCAS or MCAD and need help i recommend Dr Vadas.
I'm from Nova Scotia. I wonder if he does phone or zoom consultations?
Superb knowledge and presentation, thank you! I'm at the beginning of thoroughly understanding my itching/hives etc situation, and remedies....
I like this lady she’s so nice, and has a pretty voice.
Bless and Bravo Doctor!!! Wishing i would have met you in my journey way before ... would’ve been so much better. But better late than never to learn what caused this hell and state I’m in...., now if I can just figure out how to get insurance for all this or a miracle. Much love and gratitude!!!
wonderful thank you!! You have given me food for thought and will watch this a second time so as to be clear in my own head.
It's great to have all this info, though it's somewhat shocking, but if I had seen this at the beginning when I first learned of this problem, it probably would have scared me to death. However, I understand the need to touch all the bases since MCAS can cause so many problems. I grew up in So Cal and had only one possible allergy, to penicillin. Definintely no airborne allergies. Then about 28 years ago I moved to Middle TN. Once arriving, I had more than one person ask me if I had allergies, and my response was no. Then their response would be, Give it four or five years. Well, I didn't accept that. But I'm disappointed to say they were right. Apparently Middle TN is in a big geographic bowl that covers a large part of the south, and pollen, etc. collects in it. Unfortunately, when I started having problems, I didn't even realize it was allergies because I was getting severe headaches that would last for days. Being headache prone since adulthood anyway, I thought the worsening was just an extension of the problem, complicated by the stress of my job. I can remember calling my mom in CA and telling her, besides the headaches, I felt like I was being poisoned. At this point, I don't even recall how I came to know the severe headaches, even migraines, were allergy related, but I did, and for several years Allegra-D, etc. helped greatly. However, as the years have passed, "allergies" became year round, the Allegra/Claratin (MUST have prescription for sudafed) at times didn't seem to be helping much. During those times I would take 24-hr Allegra-D every 12 hours just to function, but still felt horrible. Not only worse headaches, but tachycardia (constant), which I attirbuted to a clash between the antihistamine and mild hypothyroidism. Along with that feeling, again, of feeling like I was being poisoned. Anacin ( aspirin with caffeine) was the only thing that worked for my regular headaches, so I was shoveling Anacin and tearing up my stomach and esophagus. Oh, yeah, and tinnitus. Loud, loud tinnitus. Long story longer, about a week ago I saw my first video about histamine intolerance on RUclips -- not scary like this one -- and realized I had symptoms they were discussing. One of the symptoms I was most concerned about was the tachycardia. Not only was I concerned about my heart, but it limited my exertion levels. I have only Medicare, and I don't make a lot of money, so the extensive tests and multiple doctors that Dr. Maitland is talking about would have freaked me out and possibly made me feel hopeless. But the other video talked about Quercitin, DAO, etc., so I decided to start there. Ordered some Quercitin from a vitamin manufacturer I trust, ordered DAO, and that's all I've done so far. Oh, and I have avoided some foods that have histamines, but I intend to get deeper into that too. Finally, the story to date, after taking the Quercitin and DAO for only within a couple of days, I already feet much better. I really had no idea how much the tachycardia was affecting me overall, until my heart rate FINALLY came down. For me, that IS the confirmation that all these years I've been suffering from histamine intolerance, as well as the fact the tinnitus has diminished by about 95 percent. My heart rate actually responded in just a couple of days. When I'm lying down, nicely relaxed, my heart rate actually falls into the 70s. Hallelujah for RUclips, and all the wonderful people who contribute in an effort to help others. Oh, and I also couldn't figure out why so often my thighs would ache -- even waking up that way. I'm looking forward to making as many adjustments as possible, removing as many insults to my body as possible, and hopefully continuing to improve. So, I'm sorry to run on like this, but I thought I'd share some of what I've been through in the hope it might help someone else.
Hi Laurie,
I am also having histamine problems for 4 years and food triggers it daily! Living in a foggy heard all day long is not LIVING LIFE at all. But I wanted to try DAO and Querctin as I heard it might help me. Please tell me the name brand and where to get them? I live in California so I know I could buy them online or in stores?
Thank you very much in advance. Hope you continue to recover! 🌷
@@chantellucky4565 it's been six months, i hope you're well. i've been taking NaturDAO, also some superoxide dysmutase. black caraway [nigella sativa] seems to help a lot. i think i feel capable of installing some sort of aero/hydroponic system so i can sprout for DAO. i'm getting a lot of ideas from reddit forums like r/histamineintolerance and r/sprouting.
@@lorenrealname1326 Hi Loren, your message made my day !!! I appreciate your very helpful info. I looked up NaturDAO on Amazon and thinking to purchase it to see if it helps me. I still have bad inflammation especially after each meal and worsen as day’s end in the evening. No conventional doctors listen or understand what MCAS is!!! Very frustrating! I basically gave up on them and tried to help myself! If there is new info you can share to help me heal a little, I will be so grateful! Thanks again for writing / following up with me!! Have a wonderful New Year 2023!!!
Chantelle from California
@@chantellucky4565 well, the nigella sativa / black caraway is GRAS, i've heard it's sometimes found on "everything bagels," i got some at in import store in Tucson many years ago. it seems to have many interesting compounds but most notably thymoquinone, which seems to bind to a lot of proteins, including histamine. i just pour some hot water over a teaspoon of them and eat them a few times a day, along with DAO- and histamine-conscious dieting.
i've also heard of people taking entire grams of vitamin C, or multiple grams a day. this has given me some kidney pain so i'm doing some kidney-conscious stuff; applesauce, lemon water, water, and more water. kidneys do a lot of the work in cleaning up HIT, take care of them.
superoxide dysmutase is to clear up free radicals, it's probably a good idea but it's expensive even for the non-vegan kind.
i don't recall if this video covered dark-sprouting for DAO, or using butyrate [a fiber found in legumes] to mediate intestinal tight junctions [of particular note to fellow celiacs, but it's not exclusive to us]... i have so much to learn still. there are many people with relative expertise on the subreddits.
best of luck to you and take care.
edit: apologies, i'm a newbie to HIT and i know very little about MCAS in particular.
@@lorenrealname1326 oh mine, Loren, you have tones of useful information I can sure to follow or at the least must try!! I live in So-Cal near Burbank, I have been searching for some herb shops here to see if I could come across some good herbs.
I been suffering since my 20's and in my 50's 😥😥😥
Same💜
Same
@@patricianoll1229 yes it's terrible 😥
Thank you for your work and sharing it.
Covid 19, mold/ candida issues, and EMF'S (cellphones,laptops, wifi,cellphone towers etc.) are all precursors to getting MCAS.
Yep, covid in March 2020. Ugh
I have systemic mastocytosis as diagnosed by 48 typtase (sustained testing results over years) and 1500ml eosinophils and finally a bone marrow biopsy. Interestingly enough the longest mast cell flare up I have ever endured was caused by the physicians invasion of my bone marrow for the biopsy. Its been 20 days of hell. Of course now to calm the mast cells, avoiding everything is not possible so I'm sort of stuck in a mast cell feedback loop. I have been tested for and have mold and ragweed allergies and its prime season for both. I'm curious if you've seen any positive response with DAO. Ive been seeing some reporting in my support group that its an enzyme in the body which is overburdened by histamine and supplementing helps reduce symptoms.
My symptoms do not involve the skin at all, but instead are similar to extreme flu. Respiratory congestion, body aches, joint and bone pain, headaches etc.
Also of note, there's tons of research thanks to COVID that shows melatonin has promise in reducing cytokine storms and is a very safe supplement over a wide range of doses in humans.
Of course its anecdotal but I take 50mg of melatonin per day and its been working wonders for me.
Ma’am thank you so much, I have been so sick for so long and every time I think I know what it is I keep getting told no that isn’t it. Idk how I came across this but it might be the issue and I am going to ask the Drs about it. Thank you so much
YES!! I have struggled and paid the price for the medical community not knowing or caring
Thank you
An amazing lecture. Thank you so much.
Incredible presentation!
Thank you!
Thank you 🙏🏼
What about for people with Systemic Mastocytosis AND hEDS? My baseline tryptase is always extremely high on 180’s now. My b12 is always extremely high as well, not sure why it’s always above 1500. I was just diagnosed yesterday with hEDS.
What kind of doctor can help put all these pieces together? My oldest and I need to see if this is us and my second child has had a severe case of hives recently.
Hi Jeniver, someone who specializes in allergy and immunology should be able to help. You can check our healthcare professionals directory to find those who list this speciality: www.ehlers-danlos.com/healthcare-professionals-directory/
Is this the same as central sentization seams all crossover the same
Sore throat, sinuses pressure, stomach cramps, fatigue, frequent urination, headaches, etc. I was tested for throat infection, urinary tract infection, flu, chest x-ray, etc nothing, they're all negative. Could it be mast cell activation syndrome? Could it be allergies? Could it be histamine intolerance? Anyone had the same symptoms? Please help. Every time I went to the doctor he prescribed me some vitamin D, because I had low levels of vitamin D. Lately I have been taking over the counter vitamin D3, but I have these symptoms for about a few weeks now. I just came across this video doing my own research, hoping desperately to find some answers. I had the same symptoms many times before. They come and go more than e a few times throughout the year.
please reach out to me some one this help me my snapchat is vlanni38
How are you doing now? Have you found the answers?
Physicians can be cruel and invalidating.
🧿Anyone know of a specialist/provider in Illinois?
Dont know if have this. really would like to know how to better able to deal with cold and heat!! I freeze leftovers and when eat onions (ginger also seems to help me ) in meal, seems to help, also keeping calm or itch real bad in the heat.
What a cool chick ("yay!" at the end 👌😄)
And seriously, 5 star presentation.
Does anyone here know if it’s possible to have mild MCAS?
All mild:
-Itching,
-food sensitivity
-Sour stomach
-low grade Headache
-Blurry vision
-Bone pain(severe, but I have hEDS)
-GI Distress
-Sometimes mild hives
-allergic-like reactions with zero testing showing allergies
-OI (orthostatic hypotension and former POTS that went away)
-smell and chemical smell sensitivity
-generally feel unwell from most and these symptoms ^^^
However, none of this is serious enough and I’m going, no anaphylaxis. I have an idiopathic DX for MCAS but he did not run labs and seeing an allergist it VERY hard where I live. I feel much better if I avoid most foods and triggering situations but since it’s mild I don’t bother and experience the symptoms on and off
I’m just wondering if there’s anyone else like me out there, or not.
Wondering If MCAS can even BE “mild”?
У меня были все мягкие симптомы много лет, но в это году переболела свиным гриппом и начались реакции с анафилаксией на аспирин, витамины, моющие средства.
Врачи все равно не знают о диагнозе тучных клеток😢😢
Does anybody know an MCAS specialist in Sydney NSW?
How do you distinguish this from dysautonomi, or is it the same thing?
So excellent! (It took my daughter almost 4 decades to be properly diagnosed!) BTW: In my 40's I had scleroderma, a collagen-vascular disease which I believe is also linked to mast cell disfunction. It took me almost a year to get a correct diagnosis.
I have been suffering from severe skin itching over the entire body. I suspect that recent weight loss and the release of cytokines from fat cells might be involved but I haven't verified this. I live in San Angelo, Texas. Can you recommend a doctor who can help me with the problem? By the way a recent test for thyroid antibodies found a slight elevation in thyroid peroxidase antibodies. A thyroid panel found T3 was slightly elevated.
I wonder if topical steroids cream can cause mast cell activation? My doctor's advice was to apply these creams for years, now only the palms of my hands and feet aren't red or pruritus as is the other 95%of my body. Dermatologist seem to the worse at denying MCAS or that TOPICAL CREAMS ARE DANGEROUS!!
do contact our helpline team who can advise and offer support: www.ehlers-danlos.com/eds-helpline/
"mass cells misbehaving" thats a hilarious way of putting it. I think my mast cells are definitely misbehaving.
What is this Drs name and where can I find her?
Anne Maitland. See under the video.
@@imaginarylife68 Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Paperback - April 20, 2020
Fix the criteria there are individuals getting slashed because they dont meet it all but still need care teenagers change rapidly the day after we got slashed started having thumb pain in the joint lasted for days. Then it was elbows again then knee then back then something else and we dont know if has pots or this. Been over 3years of constant appmts and new specialists
Who would be the best MCAS Dr to see in the UK? Private or NHS. Thanks.
Did you find out who to see in the UK?
How is the healthcare in the UK?
Definitely private. Look up someone with an interest in this specialty. Hope it goes well.
Great work but working with her is a whole different story. I have CVID and can't take IVIG due to MCAS and she dropped me because of it.
I wish I could get my kids and I to this doctor. I can’t get our regular GP to understand, and it’s just a run around to every specialist that also doesn’t understand. Our intergrative dr believes this is real for us, but isn’t super educated in it. All of my kids have had Lyme....and I can’t help but feeling that and genetics hasn’t helped.
Why can't every doctor be like you .
Having to fight and edcuate the medical community.
I'm sending to both my allergy doctors
I have severe Mast Cell activation disorder.
I deal with anaphylaxis almost daily .
I have Dysautonomia and POTS, GASTROPARESIS, CYCLIC VOMITING SYNDROME. POTS.
Along comes covid and adds to this problem.
Yeah. Along with blood clots and heart issues. It's been a lot. Ugh
I need help these doctors don't believe what I'm going through!! No matter what I eat I start getting phlegm in my throat in my trach my nose I started getting so so sleepy like I'm in Drugs. I have to go to sleep!! My trach hurts I take all kinds of medicine trying to clear my chest my throat . I get wheezing it's so terrible I need help I like in NYC I need help this is an every day event 😥😥
All Dr.'s should be required to watch this video. I had mild issues as a child, at 21 after a car accident was diagnosed as hypothyroid, at 32 after my husband died within months was diagnosed with Raynauds, Sojrens, arthritis and Celiac, at 45 had a dissected aorta (Marfan's) and for the last 7 years have had non-stop crazy issues from keloids to anaphylaxis to scary heart episodes and more autoimmune issues including colitis...not a single doctor put it all together, even after going to the Mayo Clinic. But one day I watched a cooking video and the host mentioned he got sick from eating a meal from a slow cooker because of his histamine intolerance, (I have this issue as well as not being able to eat leftovers). After a few days of googling I went to my local practitioner who then said it looks like MCAS. But that was weeks ago and finding a doctor to treat it and do the testing has been a real challenge. Even the appointment line at the Mayo Clinic in MN told me they do not have any doctors to treat MCAS.
Why is this so hard to get diagnosed and treated, seems if they are willing to call me a train wreck and others say I am "wired differently", they would realize there is an issue causing it. I am currently in MN, can anyone recommend a doctor in the area? or even in the US that is taking patients with this?
I have MAST from injecting cosmetic Botox! They said it was impossible.
2:43
i wish I knew a good doctor to go to
25:35
Nothing to do with Mast Cell Phone Towers and EM radiations? I'm joking but not.
👏👏👏👏🇧🇷🙏
I’m one of the lucky ones who has EDS and mast cell
Inappropriate activation
What about Histamine Intolerance! It's a B*&TH
Stem cell therapy for this .
Nothing new.
far to long winded and hard to comprehend , far to fast spoken and hard to hear what she is saying for someone with chronic fatigue and cognitive impairment
Download the slides too Debbie and look for other videos. She's done many and some are easier to follow.
Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Paperback - April 20, 2020
Pardon, it is a complicated subject to sum up a decade of observations in less than an hour, on a cell population long ignored by the medical community; but you can start and stop the video; there are also other specialists that may work better for you- consider Theohares Theoharides, Cem Akin, Mariana Castells. Also you can go to the Mastocytosis Society, TMSforacure.org