Mast Cell Activation

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.

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 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.

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.

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.

Hello Andy @thenerdybunch, there is another active discussion for Mast Cell Activation where your post may get much more visibility and you can meet other members talking about Mast Cell Activation. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.

> Groups > Blood Cancers & Disorders > Mast Cell Activation
-- https://connect.mayoclinic.org/discussion/mast-cell-activation/

Have you talked to your doctor about your recent symptoms?

yes, I went to see him on tuesday. I feel like he has started becoming more aware of what Im telling him and listening to me more, he says that the next step is to get an endoscopy done because of my GI issues which would also allow him to look for MCAS. However, during every appointment my mom keeps telling him that its okay to tell me that its all in my head and shes been pushing me to eat the foods im allergic to because another doctor that I saw on monday said that I wasnt allergic to anything since my blood tests for allergies come back normal (it shows abnormal levels for some of my allergens but not enough to actually cause an allergic reaction) so now Im also starting to doubt whether or not its in my head

Hello! Ive been really struggling with coping with my symptoms and diagnosis journey for MCAS. Not really medically (although that has been difficult as well) but coping mentally has been hard. I wanted to start this discussion to meet other people going through the same thing because I feel like my family, and even my doctors, dont really understand what Im going through right now and Im just super confused about everything since I dont know anyone with this condition to compare it to.

I first started with symptoms when I was 15, I ate ice cream and suddenly started feeling like someone was sitting on my chest and restricting my breathing. I went to three different allergists - all of which said that I was not allergic to dairy. I kept eating dairy (despite the fact that it usually did not turn out well for me) mostly because I was in denial about suddenly having any type of limitation. Finally, when I was 17 I decided to give up dairy all together because my symptoms were starting to get really scary. Over time I have developed an allergy to many more foods (dairy, egg, gluten, peanuts, cashews, sesame, shellfish, coffee, peas, green beans, certain strong smells, chemicals, etc). Typically what I think to be allergic reactions present themselves through shortness of breath, chest tightness, coughing, lightheartedness, dizziness, flushing/hot flash, itchy skin (but never a rash or hives), nausea or a variation of said symptoms which (if they get really bad) are typically resolved by using an epipen. Recently I have also had a lot of trouble eating since I get full very quickly and start feeling super nauseous afterwards. The thing is: I have never had hives so what if its all in my head? Could these be caused by panic attacks, although its gotten to a point when Im not even worried when I get a reaction, my thought is usually something along the lines of "dang it, there goes my streak"? I saw an allergist who told me that it might be MCAS, but all of the tests we have done keep coming back negative: we did a test for the kit mutation as well as a 24 hr urine histamine test. My doctor decided to put me on medication for mast cell to see what happens and they have really helped. They have slightly helped reduced the amount of reactions (I went from a reaction once to twice a week to going two weeks without a reaction at times) and they have made my reactions less severe in terms of symptoms and the amount of time it takes for it to go away.

I was just wondering if anyone else has had a similar experience? Has anyone else had episodes where its just one symptom? Sometimes I will randomly have chest tightness but no flushing or dizziness, which I dont know if thats typical of an allergic reaction, if that is an allergic reaction.

I would appreciate any advice anyone could give me on this, thanks!

Hi @thenerdybunch you may have noticed I moved your post to this existing discussion on Mast Cell Activation as suggested by @johnbishop. I did this so that you can connect with others who have this condition.

Were you able to set up an appointment for the endoscopy?

Not yet. My doctor is concerned that I could get an allergic reaction from the anesthesia so he gave me two doctors that treat some of his other MCAS patients. They’re supposed to call me to schedule an appointment but they haven’t. I won’t be able to do it until the summer anyway cause I’m in college, but my mom wants to do it ASAP since the amount of food I can eat has been reduced significantly because of my nausea, which my doctor says could be caused by mast cell if it’s causing my stomach to inflamate