It took me years for doctors to believe me and now that I’m in treatment off course the disease has advanced. Medical gaslighting causes medical trauma. Now, everywhere I go (only the hospital ) I’m bedridden mostly. I educate any medical staff about it. Is not just over the counter and that’s it. I’m on over 20 antihistamines and iv Benadryl. I kept telling my doctors I had MCAS. Until finally my son’s pediatrician believed me and diagnosed me. I saw over 70 doctors and missed diagnosed and treated for lupus. And MCAS patients react to normal anti-inflammatory medication.
I was originally tested for lupus too. The marker for it even had a false positive the first time. I hate the medical gaslighting and people not listening to me more. I have chronic pain too and a genetic bone deformity that took 4-5 years to be diagnosed and even now the medical gaslighting to get me help is insane. I only trust women/POC doctors that I’ve seen in the past 5+ years because they’re the only ones who hear me and care and don’t blame it on me being a woman or stress.
Hi everyone, my wife was just diagnosed with this and it’s been a battle for 4 years trying to find out what it is. Went to GI doctors to try and find out whats going on. They couldn’t find anything. Then went to allergist and she is now getting Xolair shots once a month which really help her. Wishing everyone the best who has this, it’s really difficult and I hope there are better treatments soon.
Hi Daniel. That’s wonderful your wife has had some help with this condition ❤Please can you update to let us know how it’s going ? Suffered for 20 years undiagnosed & GP still hasn’t recognised that I need treatment…😢
Been suffering from severe itching and burning spells for around 9-11 yrs.....have tried numerous things to pinpoint and remedy this problem not knowing that histamines may be the issue.....stumbled across this information after exhausting searches about the problem.....thank you for the info and am starting my approach to remedying this, I HOPE!
@@Ohhilouise i went through a lot of testing and procedures to see if my symptoms were celiac, lupus, cancer, and stuff like that. the test that showed my doctor i was dealing with MCAS was a special urine test. this test found that my leukotriene level was very high. (leukotrienes are a chemical by product of mast cells activating). I am so sorry to hear you are experiencing gastropareisis.
This is a revelation to me .I have been trying and failing to link all my symptoms for years. Just started taking over the counter anti histamines regularly and feel better .
Autism causes: 1 Genetics. 2: Fetal alcohol, smoking, drugs during pregnancy and 3: See above........Linking the symptoms, give me your email and i will show you my sequence diagram i have been putting together for over 20 years to get here!
I had symptoms from head to toe inside and out and have been taking anti-histamines with a low histamine diet and feeling pretty good. I was thinking I was eating healthy food but have quit the walnuts, avocados, citrus, chocolate. peanut butter and bananas. I quit eating gluten for 2 years now but still having other symptoms such as a terrible rash. stomach pain, brain fog, headaches, ringing ears, dizzy. bowel issues, hemorrhagic cystitis and started going to ever specialist I could after much money wasted and thinking i am just a hypochondriac and never mentioned my symptoms again. I found out about MASC I took antihistamines. started a low histidine diet and it’s a miracle. I am going to let my rash settle and might introduce a high histimine food an item at a time and start a food diary to see what my triggers are … so thank you for this post … big big hugs and If I only knew about this about 5 specialists ago! And All it took was a few antihistamines and low histamine foods to feel better my skin has a way to go from this terrible odd rash but I am not having the fibromyalgia feeling, stomach pain, bloody urine, dizziness or heart palpitations. I slept 6 hours straight (rare for me) and brain fog is lifting. I am going to live. woohoo! Thank you and big big hugs!
I am taking a H1 and H2, everyday and diphenhydramine at night. simethicone helped as well as quercetine. I take vitamin D, b6, b12 (sublingual) vitamin c (1/8 tsp crystal). I only take the antihistamines daily and plan on adding back high histamines food a little at a time. I am not recommending this to anybody but this is what worked for me.
I got the diagnosis in 2023 and I have been sick for 15years in and out the hospital all these years and not gotten help.. until I met my skin/astma/allergy doctor and scientists. He is the only one on my country that treat it and have knowledge about MCAS. I met him because of rashes, and I started asking about my other symptoms and he immediately thought about MCAS. Going to start on xolair soo and I am very excited.
@@tobias8087 I was able to stop taking antihistamines. I took 1 Allegra at night for about 3 months. Another thing that helped me was Vit B3 aka Niacin, the flushing type. Start with a very low dose, like 25 mg (you can split a 50 mg pill) then work up to 100 mg every day. If you take it with food the flush / burn will not be as bad. I learned to like the flush. I still take it. Go for walks outdoors in a pretty green space. You will get better. Just take good care of yourself and rest when you need to.
I have had a combination of intestinal and skin, sometimes eye symptoms for my entire life. I recently had a talk with my doctor wherein I mentioned that I thought my intestinal problems were helped by antihistamines. 😮 It was dismissed as coincidental. No doctor has ever believed me about the symptoms interconnectivity. Someone recently mentioned MCAS. Your video is a revelation. This seems to be exactly what is happening. Thank you so much, Doctor, for this. I at least have something to point to.
I’ve been researching MCAS on my own since I became aware of this syndrome. My varying symptoms are pretty textbook and I have little doubt that this is my diagnosis. Unfortunately, there seem to be very few doctors who have any interest in learning about MCAS or treating. It. I live in New York State, USA, and the few treatment providers cost thousands of dollars per visit and/or are nowhere near me. I am making the changes I can with mixed results. At least understanding the uniting underlying issue is somewhat of a relief and makes sense of these disparate symptoms. Thanks, Dr. Deeming, for this friendly, succinct and informative discussion. I am laughing when I think of the “little chappies” wreaking havoc in my body!
With stuff like this we end up being the doctors and are treated with distain for being smart arses by professionals in my experience and by the sounds, many others.
All the sudden I become Allergic to detergent , scented products can’t tolerate any perfumes , Laundry softener , polen and who knows what else. Is been 2 weeks eating clean , no coffee , low histamine diet and I feel much better as well resting a lot.
I had a doctor that would only allow me to address 2 symptoms per appointment! They had a policy that if you have more than two symptoms you have to schedule a separate appointment. The gaslighting was unbearable and added a tremendous amount of stress and anxiety to my already debilitating symptoms. So many different doctors invalidated me, told me it was just "stress" because they didnt know why I was always having all these symptoms. I was accused of having an eating disorcer at one point. I was even told I just have an anxiety disorder. Doctor after doctor, I finally went to a residency clinic and a young new doctor actually sat amd listened to me tell him about my condition. He ordered a tryptase test and it was high! Finallly got an explanation for what was going on!
O my goodness I hate this , I’m studying to be a doctor myself and it infuriates me a little that you can only address certain things and if you do being in other questions they brush you of and move you along so they don’t listen . And unfortunately 10-15 minutes isn’t long enough especially if someone has mcas because like the lovely Dr said your symptoms are endless .
Ready to show my family and friends this vid for the big reveal as to why i am so miserable and withdrawn and that it is not through choice or just no reason. 47 years. Trying to find out what is wrong with me, years researching/studying Psychology (mental health) Rheumatology (bone joint problems) and Neurology for narcolepsy (sleeping 21 hours a day and STILL being tired and zero energy) and as such feel like an amateur professional in each field if you excuse the contradiction. Ended up focusing on AI issues before scrapping it because i had exhausted all options (so i thought) and landing on a 90% chance it was going to be myalgic encephalomyelitis until i was in disarray again when i learnt about Ehlers Danlos (H or K variant) which also explained the ANS dysfunction that was a main player but did not fit previous ideas. All this happened in the last 12 months and i thought i had finally found 2 very very likely suspects that covered pretty much every issue i had then by chance 4 weeks ago i randomly watched 63 autistic traits video....as it got past about number 20 and felt my jaw dropping and the colour draining from my face lol, it was like my life was turned upside down in 3 minutes.....or my life was turned the right way up would be more accurate! I have spent the last month getting my head around it and am still reeling in all honesty and frantically researching it to death! Which lead me to what i feel like is my final destination...yep you guessed it...and my doctors has not got anywhere near anything i had previously touched upon other than sleep apnea and G.A.D and Depression, the last 2 were right at least, she has been so dismissive and difficult and listing my only conditions as Anxiety depression MINOR sleep probs and MINOR aches and pains, despite the fact i have lost pretty much everything due to pain, fatigue, general chronic illness and all the other stuff.
I was finally just diagnosed 3 days ago. From 2009-2012, my diagnoses were chronic idiopathic anaphylaxis, chronic idiopathic angioedema, chronic idiopathic urticaria. I was SEVERE. found the underlying cause in 2016, which is chronic lyme disease (if that can be helpful to anyone-root cause medicine). Started treatment for chronic lyme in 2021, just got an SOT for it, and it brought out my MCAS. back on antihistamines, but we're HOPING that by killing the chronic lyme, the mcas will also go away. We'll see...
@ADirtyOldPerv first of all, nice online name 🤣! And I am still being treated for the Lyme, it's a process, but we found a couple more underlying causes that trigger flares for me. Mold is one of them, and gluten causes anaphylaxis and causes me to become anaphylactic to everything. Mold can do the same. I am being desensitized to Mold through a natural process called "NAET" treatments. It's going to take awhile, BUT the more desensitized to Mold I become through these treatments, the less severe my flares become...and I just stay away from gluten. So it is working, and starting to go away, and the Lyme has become SO much better. I hope that was somewhat helpful...
@@amandalininger1616 Thanks 😊, and thank you for responding! I am going to test for Lyme disease and see if I can for the same causes that triggers your flares (gluten, mold).
@ADirtyOldPerv one thing I recommend: do NOT get the Elisa test done. Always shows up as a false positive. For a test that is actually covered by insurance, ask for the "western blot test." If you have ANY bands that show up, then you definitely have Lyme. The CDC requires 5 or more bands to be considered "positive" for Lyme. That is all BS. any band of Lyme meets the alternative criteria for a positive test. If you want to go more in depth about positive results, take the "Igenex" test. Unfortunately, that is not covered by insurance. That's what I had to do because I had 3 bands of Lyme. If u want to know more about it, and why the CDC criteria is bullshit, watch the documentary called, "under our skin." Just some more info for you that i thought would be helpful to get you started... I pray that you find your answers 🙏.
@@rootedrotor525 I took Benadryl and it was a BIG help, but the directions advise to not take it longer than 2 weeks (because of the adverse effect it has on your brain). So, I researched others and picked Allegra. It has helped about 60%, then it started making me feel tired. I am going to try taking it at night to see if that works. Seems like a never ending battle. I hope you are doing ok.
I know realistically accept that I have had this condition for almost 35 years, and Sugar is the biggest offender. And the older I get the worse it has become. I am also a celiac. I have pancreatic problems and I don’t drink don’t smoke and my diet is very very limited. Eggs nuts sweet potato chicken organic only. Blue berries. That’s it . If I eat anything sweet , my eyes become inflamed and itch my throat becomes sore my legs and arms become inflamed all in the same spot. And in January of 2024 I got a diagnosis of squamous cell cancer of the skin. I am totally stressed and my body Is in total revolt Some told me to take antihistamine and my symptoms have all but gone.
And just discovered almost 20% of people have this! Even more people have histamine intolerance. It's crazy that this is not headlines everywhere. I guess it would force us to adjust our homes to avoid mold and adjust our lives to avoid stress!
Thank you for that. I have had gastro symtoms and more all my life and my gut has been messy all my lfie and worse in the last 25 years (Ill spare readers the details but if I say at an average barnbeque Ill have to rush off three times in the course of an evening, theyll get the idea) . I cant count the number of specialists etc I have been to. Slowly but surely I am coming to the conclusion that mass cell activation is my problem. Ticks in nearly all the boxes. I would add to what you say, the wrong diagnosis tends to be owing to the fact that doctors and health practitioners of all kinds are still IMO not holistic enough. For example, the last health practitioner I went to focussed on my diet to explain my gastro problems but didnt notice (I had to point it out to her) the strange red flushes in my face, could not explain my repeated itching which has been going on for 5 years or so. These people still dont look at the broader picture, still just focus on their narrow field and thus miss ailments and syndroms which manifest themselves in many different ways, like MCAs.
Ive had prominent symptoms for 12 years and 9 years ago was diagnosed with ME. I’ve always felt that there was something more going on. Last year I developed my throat swelling from eating deli meat and research bought me to mcas. I went on a low histamine diet and I’d say it helped about 60% but when I spoke to my dr surgery (snr nurse practitioner )I was shut down very quickly. They were not informed or understood the condition. Interestingly my symptoms got a lot worse when I came off long term antihistamines for sleep three years ago. Including the development of a swelling on my torso and upper bowel pain. (Tests didn’t show anything). Thanks for this overview.
@@LaserChair I took them to regulate my sleep as I have non 24 hour sleep wake disorder (probably a part of mcas). I stopped taking them when I read about a connection between them and dementia. I now use melatonin. Symptoms above started got worse after I stopped the antihistamine
@@cherylwilliams4245 quercentin and B-50 definitely helps me. In the mean time I've also followed a low histamine diet and now it seems I can still sleep pretty good even without taking any antihistamines. I can sleep about as good as the first time I tried an antihistamine. My night stack also includes d-vitamin, glycine, mangesiumglycinate and Lemon Balm(GABA-t inhibitor) it has proved very effective.
I have a problem for the last several years where any food I consistently eat will eventually cause immediate tachycardia and hypotension when I eat it. I've almost died of starvation 3 times. IgE testing is all negative. Really need some help and direction. They haven't really been able to find much. Some random stool test showed high levels of sIgA but that's like it. Antibodies are all negative, tryptase went up from 3 to 5 a single time during a reaction. Most mast cell testing negative. Hormones normal now, CBC CMP normal. :(
I’m a mcader. I was diagnosed in 2016 by Dr. Lawrence Afrin. My mediators are Chromogranin A, Histamine, and Heparin. I have the immune system of 5 people. My comorbidities are, T2DM, PCOS, Familial Achalasia, HEDS, POTS, FIBROMYALGIA,TRIGEMINAL NEURALGIA, AVM -Stroke of the occipital lobe, FOCAL EPILEPSY. Some of the comments are just wrong. I see this all the time. It took me 7 years to figure out that mcas was my primary disease, and 7 more years to acquire expertise. Our people are not smart about this, and some of the comments, actually look like people who don’t have this, who are just trying to get sympathy or attention. I’ve seen this on almost every channel about mcas. Making excuses and too allergic for the anti histamines. Blaming Covid is another excuse. MCAS is genetic. Born with it. My mother has it with Schizophrenia. This is not something that just goes away with diet, exercise and a new beau.
I actually have mcas and I have noticed that broccoli, like the juice inside, gives me a stomach ache. Of course my parents think that I’m making it up to get out of eating it though. I don’t take medication and I’m not on a diet yet. It gets hard when you are still in school. One thing I can tell you about mcas is that I have not gone a day that I remember without having any kind of stomach ache and tiredness because it also caused me insomnia. From my point of view it isn’t that bad, but I have had it my whole life. I also get, what seems to be kind of annual, is my eye swells and it hurts. I don’t know what causes it, don’t know what it is. I’m pretty sure it has to do with mcas though.
Wish he had mentioned some examples of "mast cell stabilizers" that can be bought over the counter... as antihistamines just aren't cutting it... and some have side effects of their own!
I had covid in dec, started having swelling in my throat that moves around in my throat, also what feels like inflammation/wheezing in my lungs that moves around from lung to lung, this started after my 2nd moderna covid vaccine in June. Just saw an allergist today, she ordered 4 different tests to look for mcas. being sent off to the mayo clinic to be tested. I also have LPR, been on 5 different ppi's in 8 months, I'm on Omeprazole right now. Reflux is better. I have tried pepcid ac & I take Zyrtec & quercitin, inhalers, no improvement with my swelling & wheezing issue..should get the results in a week.
I m getting checked for this next week because I’ve been so poorly and nothing shows up in my blood apart from slightly raised eosinophilia count , sun is my biggest trigger it seems to make me feel so poorly but my doctors think it’s all in my head . But food also triggers me , meditation, stress and cold I feel terrible the majority of my life recently. My Gp never even considered sending me to an allergist so I’m paying myself .
I believe I have this but my question will H2 blockers affect digestion? I thought you need gastric acid for digestion and absorption? I take H1 antihistamine and low histamine diet. Thank you.
It can affect digestion. I was on a H2 twice and a day and then had to change to once a day. I still have issues so have to take breaks from it. I know a lot of people usually take digestive enzymes and probiotics to help.
How do I contact this man?. I'm pretty sure I have this and I'm sick of being in hospital. I need some help. I could single handedly keep the epi pen company going at the moment
how does one go about seeking testing for this in the UK? i went to my GP with concerns over this, following my hEDS diagnosis and being advised i have similar symptoms to MCAS that have just been treated as “skin sensitivity/gut sensitivity/general sensitivity/being a hypocondriac” but i’m very aware this is highly co-morbid with hEDS (and EDS in general). my GP has no idea what MCAS is and doesn’t know where he’s supposed to refer me? i feel like i’m chasing my tail 😅
Is one of the signs high b12 without taking any supplements? Who does diagnose this and what lab test are administered? What is the differential diagnosis? Thank you
I have this condition and need to take this antihistamines...cetirizine hydrochloride 10mg I have well taking it....this was a life brand which i believe is a shopper drug mart brand.
My hands sometimes get big red blotches that itch like mad and feels like my hands are on fire could this be the condition talked about in this video??? I also get loads more other symptoms to 😣
How likely is a mast cell issue if your only symptoms are uncomfortable breathing, stuffy nose, and persistent sore throat. Ongoing for over 2 years. Can't find any links. I've been down MANY MANY other paths with no answers. I've tried the low histamine diet as well as quercitin for a month, with no improvement. I just can't seem to rule this in or out.
@@julieriley8031 Aspirin is a salicylate and therefore one with a sensitivity to salicylates could feasibly end up in the hospital if they took one aspirin. I can take very high doses of aspirin without any side effects. So a salicylate sensitivity isn't my issue.
Low dose immunotherapy helped me with the food and chemical reactions. Don't worry chaps, my mother has this and she is over 90 now, lived a life of hell and still going, poor soul.
This video is extremely disturbing. I have severe MCAST. I was doing 5 hour Benedryl treatments IV 5 days a week. Now I’m on Gleevac. This MD a completely plays down the extremely seriousness of the disease ! All of my MEDICATIONS HAVE TO BE PRESCRIBED! Without ADDITIVES! If you take over the counter you will continue to be sick as hell. DOCTOR delete this!
Over the counter does work for some people my son takes cromlyn sodium (oral) and it has help calm his symptoms down a lot. He also takes cyproheptadine 8mg, Zyrtec and singular.
Stop it!!!! Not everyone has it as bad as you, or maybe worse than you. OTC drugs do work for some people. It takes 8 weeks for mast cells to turn over. The video is not disturbing, your overreacting to it. Not cool. Being kind to other mcaders, doesn’t cost anything and being a leader with this disease is Queen.
All my doctors in Switzerland think I am crazy because of all my symptoms. They just said I will be bedridden for the rest of my life and have to learn how to deal with it. I am wondering if I have MCAS? I have chronically diarrhea since 11-12 years and got diagnosed with several autoimmune diseases in the last few years. I am bedridden since 2016. And I am much too young to be bedridden for the rest of my life. I realized eating food is a trigger. But I can’t just not eat anything anymore. I will order some over the counter anti-histamine now. I hope that will help me.
You don’t have breast implants, do you? I was sick for over 12 years and had no idea what was wrong with me. It was my implants! I had saline, which also has a silicone and heavy metal shell plus leaking water, creating fungal infections.
Please look into a carnivore diet, zero carb diet. Carnivore is simply beef butter eggs. Cures a lot of people. Look up dr Shawn baker, dr Ken Berry, start there you will find a lot of others on RU-vid. Best wishes for a bright and healthy new year!!
I wouldn't take that clot shot even if I didn't have MCAS. I wouldn't risk it especially with MCAS! Imagine the palpitations... no thank you very much. If you've survived this long without the jab I'm sure you'll be fine.
