Mast Cell Activation

I hope you found your answers by now since this post isn’t from two years ago! How’s are you doing. Did you know February is mast cell disorder awareness month? I was just told this yesterday. I couldn’t get a diagnosis from my allergist at Mayo in Phoenix because although I fulfill four criteria of the five suggested criterion for diagnosis, he didn’t know how to treat me so refused to diagnose. Which is ridiculous but that’s not how some doctors are, I was having severe allergic reactions including anaphylaxis almost any time I ate, as well as in reaction to heat and since then we have discovered I’m abaphylactic to hand sanitizer and formaldehyde (which is in many perfumes) so I flew to see a doctor who knows more about mast cell activation syndrome and immediately started improving. We have since moved to be closer to family and doctors who can treat me. You may want to be tested for a new genetic variation they have been finding in some of us.

I have the trifecta of mast cell activation syndrome, Ehlers Danlos syndrome type three with some cross over to type one and Postural Orthostatic Tachycardia Sundrome (as well as diabetes, sleep apnea and hashimotos THyroiditis.) So recently my allergist ordered a genetic test for something they are calling Hereditary alpha Tryptasemia Which is a genetic trait they have been finding in some people with symptoms of “the trifecta” people with multiple copies of THis genetic thingy often have slightly raised tryptase as I do, although not high enough to suggest Systemic Mastocytosis, and the symptoms, and may respond well to mast cell treatments, although many HaT patients have many severe or odd reaction symptoms tonmedications or their excipients. The test can be ordered by any doctor from a company called Gene by Gene, but Is payed for out of pocket. It was $126 I believe. I have an appointment to go pick mine up

The fact that you took Benadryl and could breathe means that and H1 antihistamine makes your symptoms better. And that is one of the criteria for MCAS—if you respond positively to antihistamine treatment then you should continue on that treatment regimen. I’m on high doses of H1 and H2 antihistamines and xolair but I still need steroids and inhalers to control the breathing issues. Even in the research protocols it includes that additional complications need to be addressed. I’m glad that Benadryl gives you some
relief!!!! That’s hope. So continue being hopeful — that’s what life is about. I will pray that you get answers and treatment soon.

No my dr. Insists it is due to anxiety because all of my tests come out normal. I know it’s really happening so it’s frusterating. I made an apt with an immunologist recently so I’m hoping I can finally figure out what is going on. My wife has been dealing with me freaking out over health stuff for two years now. I’m so tired and frustrated. I am a little hopeful now because I feel like I’m on the right track. All it took was for me to take some medicine and I flushed and broke out in a rash. I’ve had a rash for months now. When I couldn’t breathe I started really researching. When I take Benadryl I feel like I can breathe. Hopefully I can finally get some answers and move on.

@jpearo Are any of your doctors treating the breathing problems? Like with inhalers or steroids? Regardless of a diagnosis, they should still be treating the symptoms, which they should do even if you have the diagnosis of MCAS. I was treated for “asthma” at the very start of my “not sure what is wrong with you” journey. Everyone thought it was asthma even though every pulmonary function test came back negative. I kinda always doubted that I asthma because my symptoms didn’t fit other than the fact I couldn’t breathe. I’m sorry your wife hates you because of your illness. I’m sure she doesn’t hate you, but she hates the illness and what it’s doing to you. I would urge your doctors to help manage your symptoms so you can Live day to day better as they try and sort out a “diagnosis”. I was very depressed (and still get episodes of major depression) in the beginning so I eventually gave in to taking anti-depressants and went to see a
Psychologist. It helped me sort out my feelings talking to someone. Is there anyone you trust that you can talk openly with? Maybe share what you’re going through with your wife so she can be more understanding of what you’re going through. Maybe you’ve already done that. It’s still hard though. I have had suicidal thoughts that come and go. When you don’t have control of your body, it’s a really tough, hard place to be and sometimes our relationships suffer because of it. I found it much better once I shared with my husband exactly what I was feeling and going through each day. I hope your dizziness gets better and you can think more clearly. I try to find something good in each day or do something that makes me feel like the old me.

I started to feel the same way the other day. I feel like my personality is gone and I’m just floating by. All I can think about is the fact that I can’t breathe or function. I really hope a dr can help you out soon. I’m hoping the same for myself. My wife hates me now because of all of this health stuff.

Yes I read that too. I have been super dizzy and out of it this whole week. My symptoms seem to alternate too. It is super frustrating. I just want to function a little more normally again.

Thank you for the reply. I will ask that. At least it will probably answer why I’ve been so dizzy and Out of it for the last two years. All the negative tests and different specialists I’ve seen. It’s been so frustrating.

The good news, mast cell leukemia is very rare according to the research I’ve read. My breathing gets bad to the point that I am sitting in he ground trying to get a breath in during my tennis lessons. I’m good for a few months then I will get a “flare” and I would have to use my rescue inhaler 3-4 times in a one hour lesson. I haven’t let it stop me. However I just partially tore my Achilles’ tendon, most likely secondary to side effects of meds I’ve been on, like prednisone, Celebrex and Cipro. So it’s always one thing after another but I am not willing to let it stop me from doing things that were and are really a part of me — we are a really active family. I learned to snowboard two years ago even though cold often makes my breathing worse. I have doctors that understand that sports are a huge part of who I am and they help me stay as active as possible. I think it’s part of stubbornness (I like to call strong will 🙂 ) that keeps me going. Although sometimes i pay the price, but every athlete does. Ours is just diffferent.

@jpearo you can ask an allergist to check your tryptase level, that would rule out mastocytosis.jpearo you can ask an allergist to check your tryptase level, that would rule out mastocytosis.

@leilanis How were you able to get a diagnosis? My family and I have been trying to find a diagnosis for the past three years, especially because every flare is worse than the last one. I have developed six new food allergies since july and my environmental allergies have gotten worse as well. We've eliminated every other disease that could be causing my symptoms but my allergist doesnt want to give me a diagnosis since my 24 hr histamine level came back normal as did the kit mutation even though I have responded to medication (It doesnt reduce the amount of reactions during flares but it does increase the amount of time I can be around my triggers and makes my reactions less severe).

Yeah I have really been struggling. I am an avid weightlifter so the breathing thing is hard. I just did a hard workout a couple of weeks ago and I could barely breathe at the end of it. I’ve never had that reaction to a workout before. I’m freaking out that this could be full blown madtocytosis or mast cell leukemia.