Mast Cell Activation Syndrome or Histamine Intolerance

I’ve just been diagnosed with Mast cell activation syndrome. My IgE level is 1020. I have dealt with environmental allergies and food, allergies, gut issues since age 10. I was diagnosed with pemphigus foliaceus (allergic to my own skin) at age 10-21 yrs old. Took high doses of steroids for five years and then they added methotrexate for 5 1/2 years to get it in remission. My allergies auto immune health are getting much worse. I am limited to about 15 things I can eat. I break out in hive to most foods. I have been to multiple allergies and immunologist and even to Cleveland clinic and not getting much input on how to make my immune system healthier. I have been on a strict diet for years, take multiple antihistamines and asthma medicine daily along with holistic vitamins. I have been seeing a holistic doctor for over a year. And he has helped me a lot, but in need a doctor that deals with food, allergies, environmental allergies, auto immune disorders, and this mask cell activation syndrome.
Please help!

Hello, I have dealt with histamine intolerance. It was discovered when I went to my dermatologist for itchy skin and what looked like a rash in a couple of places. As he looked over my skin, he noticed my thumb and asked to look at it. He said that was Green Thumb - an infection. The hives on my back and itchy skin was my body's way of alerting my system there is a problem. I thought I had a bruise on my thumb. He prescribed an antibiotic and a cream to calm my skin and hives. I also a functional medicine doctor (with a nutritionist on her staff) and she prescribed Hist Ease and D Hist - Natural D-Hist - "a targeted blend of flavonoids, antioxidants, proteolytic enzymes and botanicals designed to provide comprehensive support for seasonal challenges caused by common environmental allergens. The formula includes quercetin, bromelain, stinging nettles leaf, and N-acetyl cysteine." The nutritionist gave me a list of low histamine foods to concentrate on eating and eliminating the high histamine foods for a period of time. You can google both high histamine foods low histamine foods and get lists. I highly recommend you start with these lists and search for a functional medicine doctor or a naturopath or osteopath to help you. You can search for a functional medicine doctor by city and state at ifm.org. Best to you. You can get this under control and feel better.

In addition to Hashimoto thyroiditis, lupus can cause both hives and tachycardia. The blood tests for all the possible causes are numerous and expensive. Hopefully the doctors recommended in your area can see you soon and insurance will cover the cost of all the tests. If you want to do your own tests, I can make some suggestions of what to include and you can get the prices from the lab before they are drawn. Have you gotten a definite diagnosis of mast cell activation syndrome or has this just been mentioned as a possibility? Hives and the itching are miserable! I hope you get help soon!

I have read your post regarding Mast Cell Activation? I have long covid now and am wondering if I have that as well. I do get hives and I’m in Mexico now and have broken out all over my body with a little hive like red rash. I’m guess due to my autoimmune disease, Hashimoto’s, but have never had a specific test done for it. What exactly do you ask to have tested? Is there a name for it? Thank you!

I have had Hashimoto's for over 30 years, controlled by thyroid meds, but it has been verified. Get tested. Plus, Hashimoto's can cause digestive issues. I have never broken out with hives due to Hashimoto's. Don't jump to conclusions. Find reliable help.

I have read your post regarding Mast Cell Activation? I have long covid now and am wondering if I have that as well. I do get hives and I’m in Mexico now and have broken out all over my body with a little hive like red rash. I’m guess due to my autoimmune disease, Hashimoto’s, but have never had a specific test done for it. What exactly do you ask to have tested? Is there a name for it? Thank you!

I’ve just been diagnosed with Mast cell activation syndrome. My IgE level is 1020. I have dealt with environmental allergies and food, allergies, gut issues since age 10. I was diagnosed with pemphigus foliaceus (allergic to my own skin) at age 10-21 yrs old. Took high doses of steroids for five years and then they added methotrexate for 5 1/2 years to get it in remission. My allergies auto immune health are getting much worse. I am limited to about 15 things I can eat. I break out in hive to most foods. I have been to multiple allergies and immunologist and even to Cleveland clinic and not getting much input on how to make my immune system healthier. I have been on a strict diet for years, take multiple antihistamines and asthma medicine daily along with holistic vitamins. I have been seeing a holistic doctor for over a year. And he has helped me a lot, but in need a doctor that deals with food, allergies, environmental allergies, auto immune disorders, and this mask cell activation syndrome.
Please help!