I think I have this to a lesser degree. When I was 18, I was bitten by a tick and contracted Lyme disease. I spent the next couple of years, pretty sick. It started with GI issues. Chronic constipation that was set off by a myriad of food intolerances. Severe gluten sensitivity. Soy intolerance. If I ate at a Chinese restaurant, I was sick for days after I'd eat. I eliminated gluten and changed my diet. I lost weight and started feeling better after I "recovered" (or so I thought) I'm in my mid 30's now and I'm experiencing a lot of very weird symptoms relating to MCAS. I'll have different symptoms that usually take 3-4 weeks to resolve. A couple of years ago, I started drinking a lot of Kombucha tea and eating Kimchi (both fermented and high in histamines). I was putting my body in shock. I developed globus pharyngis. It's the sensation of having a lump in your throat (though nothing's there). That finally went away, but I would notice random different parts of my body being affected by different things. There'd be times where I'd have severe insomnia which nothing I took, helped that in any way. Then I'd have periods of having really irregular heartbeat/palpitations. Then that would go away and I'd have abdominal bloating or diarrhea. Once that resolved, I might have bladder issues or skin rashes. These ailments were never at the same time. They'd move around, appear and then leave as quickly as they came. I still have severe seasonal allergies and allergies to dust mites. I'm currently dealing with random numbness and tingling in my extremities. Occasional muscle fasciculations (twitching). I've started to eliminate high histamine foods and take anti-inflammatory supplements such as Quercetin, Vitamin C, Curcumin, and Luteolin,
My heart is SO overwhelmed. You girls have no idea how amazing it is to find someone JUST LIKE ME!! I have literally almost the exact same Story. I do not have POTS but have a diagnosis of autoimmune chronic urticaria and angioedema. I truly believe I have MCAS but didn’t get that diagnosis bc I didn’t have documented hypotension with my ED visits. I am currently on xolair and it’s been life changing. I still continue a low histamine diet. Thank you so much for posting these videos. It really helps me to feel ‘normal’ or like there are more people in the world like me!!
I went through hell for 8 years after I was diagnosed with fibromyalgia and dermatomyositis. My family on my father and mother side have allergies since birth. I had severe allergic reactions to pork, chocolate, milk, peanuts, but fine with any other nuts, alcohol, animal fur, feathers, smoke, cold weather, etc. The list doesn't end. I passed most my life with all kind of allergy symptoms although I never had asthma. I was always passing out. Eleven years ago I woke up paralyzed. No strength in my muscles. I had fibromyalgia and dermatomyositis. Well I was allergic to all the treatments that is normally use for these conditions. These treatments caused me diabetes, blindness, an enlargement liver, migraines and a lost of 50 lbs in 4 days. Foward 8 years later I found a Primary Care Physician that specializes in difficult cases. It took her less than 10 minutes to tell me I had Mass Cell Activation syndrome, EDS, Pots, Dermatomyositis and fibromyalgia. She had read my Hospital Records with all test results prior to see me. I was already in a blocker A and b cause my Insurance didn't cover my meds for Dermatomyositis. However, she added the Cromolyn as an inhaler and also ingested. Also, advice me in how to manage my Pots, EDS lymphedema. It took 8 months with low histamine diet, supplements, certains exercises, massages but I feel much better. I look back to my life and I can't believe that I was able to endure so much misery fir such a long time. By the time I wasn't able to move my body was giving up. I am so incredibly happy that I was able to find a doctor that helped me so much in such a short time. My other Doctors were very great but had no knowledge of why I was allergic to everything or how could they treat me. At least they bought time until I was able to find my new Doctor. I don't look disabled, and people get very confuse when I say I can't participate in certain activities or eat certain food. And is something that I have to deal constantly even with other Doctors. At least I have the strength and the clarity now to defend myself.
I did not get diagnosed with Ehlers Danslos Syndrome till I was 68, but learned that 2 common issues sern in people with that are POTS & MCAD, both of which I have. POTS is under control now that my inflammation is better controlled. I wish I had known about the EDS when I was younger, I am nearly crippled now from repeated joint injuries. So perhaps, ask your doctor to send you to a geneticist for evaulation. The Ehlers Danslos Society has lots of videos on YT & their webpage about it too.
This is exactly what I am going through right now. It feels like I can’t eat anything. And I’m always anxious with that feeling like my throat is closing. Thank you so much for sharing. This is so helpful!
Hello you both....I just found your channel and its full of great advice. You probably know this, but many people with MCAS have severe allergies to dyes. I found this out while trying to "clean" my diet up, eating mostly fruits and veg, and kept getting worse. Finally figured out there is red dye on apples, "orange" dye on carrots, red dye (bleached white) in pretty much *all* medicines, both prescription and over the counter, dyes in Antacids, red dye is infused into steak, hamburgers, ham, on gum, processed beverages, and on and on. Sort of the same as how there is gluten on the backs of postage stamps (which most people lick) in "sizing" on some new clothes, (I don't even know what "sizing" is) and of course pesticides sprayed on foods, steroids in milk, etc. Going organic has helped me, but still have a long way to go. Anyway, thanks for sharing your advice and hope you both get better. :)
Hi there- thanks so much for your kind words & great advice on dyes! It's amazing how many things are included on that list. We're very sensitive to medications & suspect dyes play a part in that as well!
@@TwoBeingHealthy I have a very long compiled list of all the names they "hide" red dye under. Red seems to be the primary culprit for many people. I'll try to send it through your blog message system. Use it, read it, burn it, repost it, compost it, smoke it, ignore it, delete it....your call. :)
😂 I think you need help in the way of lithium. Maybe stop relying on tin foil and see a doctor. There is no dye on fresh fruits, vegetables or meat. Seriously wacky that you think that is real. I hope you get the help you need. From a psychiatrist. Seriously. Grow a carrot from seed, go to your local ranch and ask for fresh beef, go apple picking at an orchard. It's loony tunes to think there is dye on produce. Seriously bonkers. It's shameful anyone is entertaining your delusions.
I'm fasting now because I had a bad attack yesterday and I'm waiting on tests so left to help it alone. It effects my bloody pressure it's so uncomfortable and scary.
This video was so helpful; thank you! I’m still trying to figure out my MCAS triggers since for so long I blamed all my symptoms on POTS. This has definitely given me food for thought (pun intended)
Hi Ladies, I have POTS and MCAS. I was bedbound at one point. Much better now. I thought I had "beat" my illnesses. About a year ago was working out 4-5x week, built back so much muscle and was eating any food I wanted, still having alcohol occasionally too. Then I started to have severe rib pain on left side, loose ligaments. I didnt know about MCAS at that time. But I came to find out it was all related and caused the rib symptoms. I have cut a lot high histamine foods out of my diet. But I am still feeling so restricted. I do okay for a week or two, lots of broths, roasted vegetables. Very basic diet. And I do eat meat. I guess I'd like to ask more about what exactly your diet includes...what foods? I was having horrible acid reflux for months and had to eat extremely bland. Now, I eat a little more variety. But, still feeling deprived and so that is why I binge on things I know aren't good for me. Also - around my cycle I have very bad yeast symptoms...on and off for 8 years now!!!!!! :( As far as working out - building muscle mass made me feel amazing last summer. But with my rib issue and just POTS and MCAS in general, I am finding it hard to build muscle/ do any weight lifting for fear I will injure something else. Yoga helps, but I wonder if there is a way to incorporate weights. Do you exercise at all? If so, what kinds? As you said, with all of this - it's like too much of something that could possibly be a trigger is when things really fall apart and my body overreacts and I get very sick....I would appreciate any suggestions you have! Thanks for sharing!
I can relate to so much of what you said! Not diagnosed yet but I know this is it because only atarax helps and a lot of my issues went away when I learned about histamine and started a low histamine diet. It’s still confusing…like I bought two mangos from the store, ate one that very day and I was fine. Ate the second a week later and my mouth was burning and my throat felt as though it was swelling up a bit. I guess that weeks time of sitting out was enough to raise the histamine It’s scary. Then sometimes I plain forget about what’s safe- ate ham (smoked meats are high histamine) and got quite sick. Too much physical activity brings it on as well. What is causing this!!? Why do so many people have it!? Also, what was the medicine your doctor put you on? Do you think it made a lot of difference for you? I take atarax, but sometimes it barely helps.
MCAS actually causes POTS. Lupus is definitely a gut-related illness. All of these autoimmune conditions usually come on after antibiotics, your gut flora being thrown off. Mast cell is a devastating and extremely serious illness. Some with mast cell don't even experience histamine issues specifically, their symptoms are activated by other pathways. There are now thought to be thousands of mediators. Some are living in one room on 3 foods. Glad to hear diet helped you, very important to be avoid what triggers you. Thanks for sharing your story.
I think I have this too. I have POTS but feel more symptomatic after eating certain foods, have worsening heat intolerance. After eating triggering foods, my resting HR is up, I feel super anxious and sometimes I break out in crazy rashes. My family doesn't believe I have POTS let alone a histamine intolerance so I feel alone and depressed. I'm getting the Histamine whole blood test tomorrow, I wonder if that test will be accurate and if there's any other tests I should get? I'm also going to start a histamine restart plan diet. I really hope it works.
I think I may have this. I also have POTS. Could you please link your list of foods that you eat to lower histamines? The link above and in some comments do not work. Thank you!
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.
I'm not sure about that - it's something that I would recommend bringing up to your doctor. The easiest way we have found to test if you do have MCAS is to do a low histamine diet & see if your symptoms have improved!
Thanks so much for your reply! I’ve been sick for 5 years with no diagnosis. Your blog and RU-vid videos have taught me so much about Mast Cell Activation Syndrome. A few weeks ago, I actually started adjusting my diet and taking antihistamines daily before bed and I’ve finally found some relief! This is hands down, the best advice I’ve been given in 5 years. When this whole coronavirus thing is over, I have an appointment with an allergist/immunologist and hope to have a real diagnosis. Thank you so much for sharing what you know about chronic illness. You are truly helping people! ❤️
I do have MCAS, diagnosed and confirmed by immunologist and 2 diff. Hemotologists. A dermatologist just in case. And my IgE was fine. My IgA was low, I have wbc high on one, low on another neutrophils, lymphocytes, but that was like the first step of the amount of testing they did and it won't rule anything out really - if you aren't having a reaction when they test. There were massive amounts of scans and blood work, an endoscopy, etc etc. The tests are only as good as the time of day, accuracy of the lab, the conditions the samples were kept in. Even for bone marrow testing. I don't know what else your doctor did besides allergy tests because they won't show anything they just make sure you DON'T have allergies, to eliminate that as a possibility, they aren't for MCAS. You need a doctor familiar with it and who treats other patients - That's huge. Because some say they are familiar but really aren't. You need to use the Swiss Histamine PDF or app for food lists, because most of the recommendation lists are junk. And keep a food diary that includes not only the names of the products but the brands AND the dates (how old the product was). But you really really need a doctor who specialises, because some of them just give you an ibs diet and you'll get really sick if you have MCAS. You can take pepcid/antihistamine combo and see if that helps, but it depends on what your issues are, it wasn't enough for me - I use cromolyn and compounded ketofin, those both require prescriptions. And they still aren't enough sometimes. But it could be many things not just MCAS.
ScreamToASigh Thank you so much!! I haven’t been able to find a doctor in my city who is familiar with MCAS, but I’m still looking. So far, taking Benadryl everyday before bed and eating a low FODMAP, low histamine diet has helped more than anything. I still have to be super careful and avoid getting overheated, avoid new foods, avoid leftovers, avoid dogs, avoid fragrances. Even then, I feel like I’m only functioning at 60%. If I may ask, how did MCAS develop for you? For me, I was perfectly healthy all my life, then one day in my 20s (about 5 years ago), I suddenly had chest pain and difficulty breathing. And it’s just gotten worse since then, with new symptoms every few months.
@@elizabethbennet4849 I started having symptoms at 18, mostly citrus reactions - gastro and almost like painful acne .. And none of the doctors were able to figure out what was going on.. And after the semester at college, I flew home to see my folks and my mom noticed where I was wearing a gold bracelet my skin was turning black underneath and she said oh you have the same problem as me and my dad (my grandfather), stop eating citrus. And then I was ok, and then ten years later it got so bad couldn't eat tomatoes, broccoli, onions or bell peppers, or kefir (yogurt drink) like it kept on getting worse. It felt like I was being punched in the stomach and I kept on getting itchy all over, like I would wake up covered in scratches like I was mauled by a cat. And I couldn't stop coughing - they kept on giving me meds for asthma, and bronchitis etc etc, they did chest xrays, etc. Nothing. I was told it was just food allergies and ibs. Which is what my mom and grandfather were both told. But mine kept getting worse theirs are/were mild in comparison. So basically after many many doctors and really bad advice and tons of ridiculous medicines and diets, my mom's like you know, there was that doctor you saw in high school for allergy shots, why not try him. And he's like ahh yeah I think I know... I just got off the phone with Dr. Afrin, let's get you evaluated. And then the insurance company sent me to a hemotologist oncologist - but after many tests he said nope it's not the cancerous version, we only treat that, go see your allergist. So I went back. And he sent me to see a gastro to rule that out, and they gave me a ridiculous ibs diet, and I saw a second one - same thing... So I go back to him and say I don't think they're getting it.. So he said get second opinion, what will it hurt? So I went to get a second opinion from one of the specialists on the doctors on the 'tms for a cure' list I think it was... And he said here's your confirmation.. Go back to your allergist and tell him to send over your files/any tests every 6 months. (Because this guy was not in my area, it took 2 1/2 hours to get to him). Sorry for the length, but that's about it.
