Mast Cell Activation

I pretty much have a horrible reaction to any pill. Stress really sets it off bad. I also feel like my rash gets worse if I eat junk food. I wish I could hurry up these Dr appointments. At least now I’ll have something to tell my gp and maybe she will take me seriously. I think I’m going to have my dermatologist get another biopsy of this rash. I am hopeful now though. I’m 99.9 percent sure I have a mast cell disorder.

Most doctors say the labs are normal because they aren’t actually taking the Right labs. Some then assume it is anxiety. And some of the chemicals mast cells control in our bodies do cause anxiety and or depression as well as hundreds of other chemicals that effect various systems all over our bodies, so it’s understandable that doctors would be confused.

Did they test your prostaglandin levels? Most doctors dont. They need to take labs both when you are at your least symptomatic (for a baseline) and within one to four hours after a reaction. Tests they should order include prostaglandins (pgd2 and pfd2 I believe) as well as tryptase(which is often the only one most doctors test for but that is incorrect), N METHYL hystamine levels and whether your symptoms improve when treated. Some of these tests need to be kept chilled during storage, transport and delivery including the 24 hour urine or a preservative can be placed in the urinalysis collection jugs before use. It can also be helpful to know your leukotirine levels, even tho to isn’t a diagnostic criteria for any mast cell disorders, because if it isn’t high certain medications might help you more such as Singulair/montuklast or Zyflo/Zileuton ER.

Caution when trying new foods and treatment, it’s best to change one thing at a time. It helps to determine what our triggers are and the best Advice I was given when I first was seeking diagnosis, was to keep a symptom and trigger journal. I like the app called “MySymptoms” for that because it allows you to print your tracking or graphs of your symptoms to share with doctors.

Treatment includes identifying and avoiding triggers, certain medication, and treatment of symptoms. Improving on Benadryl, an h1 blocker, fulfills one of the criteria of diagnosis. 1st tier h1 and h2 blocking medications would include things like Allegra, Zyrtec or the like, and Zantac or Pepcid. Many also find Atarax or Hydroxyzine helpful, and Benadryl, an epi Injector and steroids are common rescue medications. Most also are put on singulair or it’s generic or something similar like Zyflo. Some find the shot called xolair useful, although a side effect of xolair can Be anaphylaxis, most mcas patients do well on it.

Many of us react to excipients like preservatives or fillers in the over the counter versions, but respond well to the pure ingredients, and some of us react even to certain medications in their pure form. So it’s been best to try one at a time, and always have your rescue medication so on hand just in case. Doctors often say a medication is safe or “no one reacts to that” but mast cell patients can react to tiny amounts of their triggers, which can be practically anything. Check out thr blogger mastattck.org for a lot more helpful info like testing and treatment and an emergency protocol and the like. I hope you find answers soon.

The more I think about it there have been lots of subtle signs. I’ve had acid reflux disease since I was a kid. I had Athsma as a baby that went away. I would randomly be allergic to my wedding ring. I’ve had a weird rash that popped up on my leg from exposure to the sun that went away. Ever since I can remember when I drink alcohol my uvula swells up. I just never realized MCAS was a thing and I think a lot of drs don’t know enough about it.

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.