Mast Cell Activation

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

I’m sorry to see no one has replied to you since 2017 (edit: after I posted this it showed me lots of replies). I joined just to make sure you have since found resources. If not I recommend you look into the support website called insight and look under mast cell activation you will find several groups an one is the mastocytosis society who is also found at tmsforacure.org and also check out mastattack.com which is a searchable blog written by a scientist who turns out to be a mast cell patient.

Ps I was a mayo patient but after they told me I had a mast cell activation disorder they only were able to help me somewhat so I have since gone elsewhere and recieved more treatment and have a much better quality of life now.

@danmlee: I am sorry you feel this way but let me tell you I have felt that exact way and still do off and on. I was diagnosed with Systemic Mastocytosis 11 years ago. I went thru a week of tests: bone marrow biopsy, 24 hr urine, labs of all kinds. Saw bone doctor, hematologist and then Dr. Butterfield (all at Mayo). I was on Interferon for 3 years (giving myself shots 3 times a week). I had nearly every side effect they listed. I still struggle from fatigue and depression. I've had numerous broken bones (bones of a 90 yr old)...and in recent years been seen as indolent. It seems I am riding the effects of the Interferon after having a adverse reaction to PegIntron (a one shot a week med) and have been off any prescription medication for Masto since. I do a lab kit sent to me from Mayo every 6 months. I do a 24 hr urine and have blood vials drawn and it's dry iced to Mayo from Fargo(ND). As long as the numbers are as Dr. Butterfield sees fit I will continue in this manner. I am on aspirin. I flush, I have restless leg, I have off and on adverse reactions to various foods and temperatures. I am low in iron(I do not store iron)so am on a lot of iron and calcium...which is hard on my digestive track. Winters are by far the hardest on me with less daylight and cold temperatures. I use a lightbox to help with fatigue and depression usually starting in Oct to April. I have been frustrated with this disease but I know that many suffer much more than I. Am need to feel grateful with the indolent role. Welcome here.

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.

Okay, Please look into symptoms of salicylate intolerance. Many people with MCAS are allergic to asprin which contains salicylates. Salicylates are in many fruits and vegetables. Nearly all herbs and spices are high. I had to go on low salicylate low amine diet and I would be dying right now if I had only reduced histamines. I had all of these symptoms like your daughter and got way, way better after lowering my salicylates. I will list some of the things I eat that keep me from having hardly any symptoms. First meal is usually hamburger patty with salt and garlic powder only and no other spices, and green beans. Second meal would be sirloin steak or chicken with either small amount of sweet potato or green beans or broccoli. There are other low salicylate vegetables she could eat but until you learn everything yourself which is confusing at first this should help her symptoms pretty quickly if this is all she eats for about a week. I also eat clarified butter with meals which is adds flavor and is satisfying. I don't know if you'll see this since your post was so long ago but maybe it will help someone else.

Does anyone know about the progression of mast cell activation disorder? I'm back speaking about my daughter. Last October she was a vibrant young wife and mother and now she is a shell of a person. Her list of low histamine/Nicole free foods is getting smaller by the day due to reactions. The sun and heat make her react. She has gastritis and severe constipation where she is having to do daily enemas. She is on quercertin and just started keto fin ( my spelling my be totally wrong on these) but she started that yesterday and got blisters on her lips and a tight throat so I fear she may be allergic. She's allergic to all the supplements she used to take and when I spoke to her last night she told me the only time she's not in pain is when she sleeps. She's very depressed. I feel like she's slipping away. She has an appointment in august at Mayo but my fear is she mentally won't make it that long. Why does it seem like drs don't take this seriously?

Does anyone know about the progression of mast cell activation disorder? I'm back speaking about my daughter. Last October she was a vibrant young wife and mother and now she is a shell of a person. Her list of low histamine/Nicole free foods is getting smaller by the day due to reactions. The sun and heat make her react. She has gastritis and severe constipation where she is having to do daily enemas. She is on quercertin and just started keto fin ( my spelling my be totally wrong on these) but she started that yesterday and got blisters on her lips and a tight throat so I fear she may be allergic. She's allergic to all the supplements she used to take and when I spoke to her last night she told me the only time she's not in pain is when she sleeps. She's very depressed. I feel like she's slipping away. She has an appointment in august at Mayo but my fear is she mentally won't make it that long. Why does it seem like drs don't take this seriously?

I'm so sorry to hear about everything your going through. Currently my daughter is being treated for MCAS by Dr. John Moore. He works out of the Twin Cities, Midwest ENT. He was so helpful trying to understand what was going on with my child. He seemed to be learning and knowing alot about MCAS. Maybe you can reach out and see him. Lots of luck!