Mast Cell Activation

MAST symptoms -Shortness breath, air hunger, difficulty deep breathing

@yaramarthe gave us all an incredible Christmas gift by posting this article about MAST cell activation syndrome: https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/. MAST cells are white cells present throughout our bodies that have to do with the immune system. When they are triggered and run wild, they cause all sorts of problems at every level -- heart, respiratory, circulatory, etc. The article actually lists symptoms by each system in the body. At various stages of our lives, different MAST cells can go off the rails and cause different odd symptoms and illnesses not picked up in routine blood tests. I've been reading a lot about MAST cells this weekend and believe this --and the type of medicine being practiced at this clinic whose term I can't recall --perhaps frontal? -- are 2 doors to answers a lot of us have been looking for. Whatever the name for the type of medicine this is, ie frontal, it is a systems approach looking for underlying root causes of medical issues. The inflammation et all caused by MAST cells run amok is definitely a root cause. Mayo Connect and the Mayo Clinic web site have information about MAST cell diseases; but on a brief reading it seemed they dealt with more specific rare diseases. At this stage of my learning, I need broad brush strokes. THE best site I found was by a scientist called Lisa. I think it was called askmast.com. I'm afraid if I close this to look it up, I'll lose the whole thing...but you can find it. I was thrilled to learn that Cleveland Clinic is practicing this frontal? medicine...they are in my neighborhood. Thank you yaramarthe and Mayo Connect for getting this information to us. Best wishes for a happy, safe, and healthy new year to everyone. Nancy

Hello @slarson18, I would like to add my welcome to Connect along with @pamandrewsrn and @smbryce1. @smbryce1 shared some good resources for information on mast cell activation. Here are the links in case you missed them.

- The Mast Cell Disease Society: https://tmsforacure.org/
- Mast Attack - Educating people about life with mast cell disorders: https://www.mastattack.org/

Treatments from first website above - https://tmsforacure.org/treatments-2/

You mentioned trying to get an appointment at Mayo Clinic through internal medicine but it was rejected. Have you tried going directly to the website for the condition and clicking the Request an Appointment button or asking your doctor for a referral?

- Systemic mastocytosis care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/care-at-mayo-clinic/mac-20352862

I’m sorry to see this about your son. There is a Facebook group for men with mast cell disorders. I’m curious did he have corona virus? A lot of people seem to start having mast cell symptoms after corona virus

I’m not on this website much anymore since I don’t go to Mayo Clinic anymore. And I moved back home to California

Where have you gone? My son who is 30 has just received a mast cell disorder diagnosis.

Thanks for sharing your story. I was diagnosed with Cutaneous Mastocytosis 5 years ago. I have so many symptoms of systemic such as headaches, chest pains, flushing, abdominal pain, allergies to hot and cold, etc. They have yet to diagnose it as systemic because most doctors I see don't know what tests to run. I tried getting into Mayo so that they can run tests and diagnose me but internal medicine rejected me. How did you get into Mayo for them to run tests and get a diagnosis? Always a frustration with this disease when so many know so little about it, so hoping Mayo will reconsider my request since they seem to be the only ones who know at least some information on how to treat the symptoms of this disease. Any advice is helpful.

Hope you can get a diagnosis soon! Getting a diagnosis was a game changer for me, I take h1/h2 antihistamines, leukotriene blocker, and chromolyn sodium and that along with my service dog has made my mast cell totally manageable. I went from having a reaction multiple times a week and needing to use my epi frequently to not having a reaction at all this month and going back to eating many of the foods I used to be allergic to

I have read all of these posts and have gained some valuable information. I, too, am struggling for a diagnosis. I am feeling frustrated and tired of the many specialists who cannot agree on how to treat or diagnose me. I have had facial flushing for years and have also now developed intermittent diarrhea, reflux, tachycardia, palpitations, dizziness, headaches, etc. I have had NUMEROUS labs and scans and the doctors are undecided about whether I have Carcinoid Syndrome with no tumor found, or Mast Cell Disease. My Chromogranin A has been elevated, my 5-HIAA have been elevated, with a normal Tryptase, normal Urine Methyl-Histamine, normal Prostaglandin D2, and an elevated/ High Plasma Histamine. It is super confusing and the doctors cannot agree. I am going to Mayo in October and am hoping for some clarity. In the meantime, I may go see an Allergist/Immunologist at Essentia to see if they can do any more testing. I am in Northern Minnesota, about 75 minutes from Duluth. I have self-treated with an H1/H2 blocker and Quercitin. I also have developed allergic asthma as an adult, just diagnosed in August, and am now on inhalers for the first time in my life. Thank you all for information and hope everyone finds answers.

Yes, thanks so much. I've heard of that and had been looking at pure aspirin powder on Amazon to try a few months back. I can't take any of the regular aspirins because of the inactive ingredients in them. Would have liked to try through a doctor but lost my insurance and just recently got it back so I'm trying to decide whether or not to ask the doctor about it first. Some of my reactions have to do with asthma like symptoms so that would probably be the safer route. Another thing I'm scared of is having to be on aspirin for the rest of my life. Not sure about long term effects of that. Will have to look back into that before I finally decide on it. I know my ex boyfriend would be up for it. but I was scared to tell him about it because I think he should probably see an M.D. first. We were both exposed to mold and he had the clogged nose and nasal polyps like you and could never breathe. So I finally convinced him to try low salicylate/ histamine diet for a week and now he wants to stay with it because he can breath again but I warned him that he may not be able to tolerate or add back foods that he once was able to deal with. He refuses to go to the doctor, otherwise I'd have recommended that he try the aspirin therapy. He would be a perfect candidate. I plan on looking back into it and discussing with my new doctor now that you have reminded me about it. I have an appt. next week. Thank you so much for your commenting and trying to help me out I really appreciate it!

I have Asthma, Allergies and Nasal Polyps. Allergist I see now told me people with all of these have something called Sampters Triad. Allergy to Salicylates. He advised to try desensitization and started me on very low dose aspirin, under their supervision. Gradual increase to 325 mg daily. I have noticed a great improvement in all asthma,allergy and nasal problems, without changing food I eat. Don’t know if this would apply to your problem but maybe worth checking into.