Mast Cell Activation

Finding what helps people with mast cell disorders either with mastocytosis or mcas or the newly discovered familial Tryptasemia or Hereditary Alpha Tryptasemia Syndrome, can take a lot of time and trial and error because mast cells release or control chemicals that can cause hundreds of symptoms. And because, as One mastocytosis patient told me, we are each like our own portable chemistry set.

For me the things that helped improve my quality of life most were eliminating triggers, staying hydrated, and finding a daily antihistamines (h1/h2 inhibitor combo) that I could tolerate and help, a leukotirine inhibitor, Which is like Singulair or Zyflo or One other I’ve never tried, and a mast cell calling medication which for me means Ketotifin tho some use Gastrochrom or some version of it.

Gradually raising the dose of Ketotifin till I was at a good for me level (most people don’t see improvement on it till they reach the right dosage for them which for me is 10mg three times a day) it has a 12 house half life so most people take it twice a day, but some of us find more improvement with three times a day. and most I’ve spoken with seem to find improvement with 2 to 6 mg doses.

For me staying hydrated has been elusive. I have reacted to the oral rehydration drinks I have tried. Next on my list is somethint called Nuun if I can find some without citrus. Currently I recieve iv hydration as needed.

I found and eliminated triggers to the best of my ability by keeping a symptom and possible trigger log (I use the app called “mysymptoms” available on both Apple and Android last I checked, and there’s are others like it.

I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match the new international criteria for MCAS. I had to do my own online research to basically self-diagnosis. Over a life-time I have received about a half dozen or more misdiagnoses, including childhood abdominal pain so severe I fainted and had my appendix taken out only to learn it was normal. I had dozens of x-rays of abdomen, and nothing could be found, all negative so lived for another twenty plus years with diagnosis and treatment for a duodenal ulcer, though that never appeared in any x-ray. Then I got diagnosis of IBS, which seems to be correct but researchers now know that IBS and MCAS often are comorbid syndromes. I've been prescribed various medications for IBS none of which did much. Finally a gastroenterologist tested me a new diagnosis Small Intestine Bacterial Overgrowth (SIBO) which came back positive. That explained the IBS symptoms. The gastroenterologist recommended a Xifaxin trial. It is a very expensive drug with no evidence of effectiveness as far as I could find any studies. So I use probiotics and Ultimate Meal green food for every breakfast, and this helps the IBS symptoms. But not the MCAS symptoms. At least I got four boxes of free samples of Xifaxin, which I can use for international travel if I get traveler's 'revenge'. For the newly emerging chronic cough problem I went to an ENT and allergist and all tests came back negative. Four different doctors and specialists could not figure out a diagnosis. A couple years ago I managed to convince my Medicare family practice doc to get me one of the genetic tests for mastocytosis. (My grandfather died of what my father reported was an 'odd' form of leukemia; my guess is it was mastocytosis leukemia.) That came back negative. But that test is not one for MCAS. There seems to be no good test yet available for MCAS. Finally last summer when I was in Canada my allergy-like symptoms got much worse, the cough kept me from going public. I went to the local drop-in family health clinic, and the doctor suggested, as I described my symptoms and research findings that I do two trials - a powdered inhaler and if that failed, a generic of Singulair. The inhaler only caused my chronic cough to get extremely worse. The Singulair reduced the cough symptom about 60% in a few days. I read a 2014 medical research article on MCAS symptoms and positive response to an antileukotriene is now one of the diagnostic criteria for MCAS. I take a low dose daily and it has seemed to continue to help. Osteopathic neck manipulation has also helped with chronic cough reduction, as there seems to also be a structural problem in part may be due to my mild scoliosis.

Here is my own short summary of diagnostic criteria based on my reading of medical research articles, Akin, Valent and Metcalf (2010) revised with Petra et al (2014):
Table II. Criteria for the diagnosis of mast cell activation syndrome (MCAS).
Idiopathic MCAS.
After primary and secondary rule out: no detectable clonal MC, no reactive disease, and no allergen-specific IgE Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:
• Skin: flushing, urticaria pigmentosa, pruritus (itching), angioedema, dermatographism; rashes, hives
• Respiratory: wheezing, sore throat, stridor; [cough]
[Idiopathic anaphylaxis, with urticaria (during anaphylaxis, unlike SM) and high IgE.]
• Cardiovascular: chest pain, hypotensive syncope or near syncope, tachycardia
• Gastrointestinal: abdominal pain (cramping, bloating), nausea, vomiting, diarrhea, malabsorption, esophagitis; gastroesophageal reflux
• Naso-ocular: pruritus, nasal stuffiness; conjunctival injection
• Neurologic: headache, memory and concentration difficulties/brain fog, paresthesia, peripheral neuropathy
• Musculoskeletal bone/muscle pain, degenerative disc disease, osteoporosis/osteopenia
• Systemic: anaphylaxis, fatigue, faintness
Documentation of an increase of a validated urinary or serum marker for MC activation: esp. increased tryptase
Response to anti-mediator therapy (decr in frequency or severity or resolution of symptoms: e.g., H1, H2, antileukotriene meds

I have or have had 15 of these symptoms. Response to the antileukotriene seems fairly definitive to me.
Wishing everyone in this thread best of luck in getting good diagnosis and finding optimal medication and diet.

Hello! I have just come across your post and I’m so happy to know I’m not the only one! About three years ago i randomly developed a dairy allergy that had progressively gotten much worse and over time i have become allergic to many more foods (the most recent being coffee). I told my doctor that even though I was avoiding the foods I was allergic to and being really careful I was still having allergic reaction with no cause, even when I didn’t eat anything which made him suspicious that I had mast cell activation syndrome. I did the 24 histamine as well as a tryptase year during my consultation and they tested for the kit mutation, all of which came back normal. Because of this, he determined that I did not have MCAS. However, my symptoms have been getting worse, starting in around late December I started having an allergic reaction pretty much every day (mine always present themselves in shortness of breath or worse) as opposed to my normal once a week and just this Friday I had to use my epipen because of a reaction to who knows what. I was on the bus back to my apartment when I started feeling chest tightness and shortness of breath, I thought it was just another minor reaction but then I got to the lobby and started coughing and I almost didn’t make it to my apartment because I was so dizzy and lightheaded. Finally when I started flushing I decided to use my epi which stopped my reaction. My PCP decided to put me on medication despite the test results to see what would happen, I am on H1, H2 and leukotriene blockers, they’ve helped make my reactions less severe but haven’t decreased the amount. I’m just super frustrated because my PCP doesn’t know what’s going on and I feel like my allergist has given up on trying to find out what’s wrong. I’ve had to use 7 epipens in less than a year- and that’s despite the fact that I only use them when I have no other choice (which I know is bad) because I’m terrified of needles. I’m started to get really scared that I’m never going to get a diagnosis or start getting better and that my symptoms will just continue getting worse... I don’t want to keep living like this, always scared of when my next reaction will hit.

I can understand how you feel about not wanting to live with your symptoms and not feeling like it's getting better. There are times when i don't want to live and think about ending my life. I work part-time and see doctors part-time. I was diagnosed with MCAS about a year ago after living with my shortness of breath, chronic muscle and joint pain, headaches, fatigue, tremors, reflux, etc. I also have fibromyalgia (which is a real disease, acknowledged by rheumatologists. And i treat many patients with FM as I am an aquatic physical therapist.) and really bad osteoarthritis mostly in my spine. My symptoms, the worst one being shortness of breath, started in Aug 2012. I have a rheumatologist that has worked with me from the beginning of all this. Initially they thought it was asthma, but i have never had any history of asthma and never smoked. So i tried all kinds of inhalers and was put on prednisone and given a rescue inhaler for the breathing issues. The ran allergy tests and i am allergic to walnut and olive trees. I don't have food allergies that i am aware of. I do have very high IgE, which is antibody produced by the immune system in response to an allergen, and means i am a very allergic person. I had been working with an allergy pulmonologist to control my severe and persistent asthma, who thought i might have MCAS. I never thought i truly had asthma because my symptoms were not typical of asthma. I get chest tightness and pain in my ribs and intercostal muscles that make it difficult to breathe. I actually have to take pain meds so it doesn't hurt so much to breathe. You are the first person that has posted with the same breathing symptoms that I have. Fortunately, I have not had an episode of anaphylaxis. I can imagine how scary that is, not being able to breath is the worst feeling in the world. The allergy pulmonologist has put me on high doses of H1, H2 antihistamines, two inhalers both with steroids, oral prednisone and i have been on Xolair since 2013. We have talked about trying ketotifen, which is a mast cell stabilizer but I am hesitant because I already on 18 other medications. I am so tired of taking meds; i am on first name basis with everyone at CVS and they greet me by name before i get to the counter, which surprises all the other customers in line. I carry epipens with me at all times since anaphylaxis is a symptom of MCAS and can be triggered by Xolair. I am currently in a flare up because I am having a lot of difficulty breathing deeply and feel short of breath most of the time. I recommend you find an allergy pulmonologist, who should definitely be on your team of doctors. I also see a cardiologist twice a year to monitor my heart as I also have chest pains, tachycardia (fast heart rate), and high blood pressure. The heart can also be affected by MCAS. I hope you find a pulmonologist that can help you with your breathing issues. You are the first person that seems to have similar symptoms to mine. Let me know how are doing.

I can understand how you feel about not wanting to live with your symptoms and not feeling like it's getting better. There are times when i don't want to live and think about ending my life. I work part-time and see doctors part-time. I was diagnosed with MCAS about a year ago after living with my shortness of breath, chronic muscle and joint pain, headaches, fatigue, tremors, reflux, etc. I also have fibromyalgia (which is a real disease, acknowledged by rheumatologists. And i treat many patients with FM as I am an aquatic physical therapist.) and really bad osteoarthritis mostly in my spine. My symptoms, the worst one being shortness of breath, started in Aug 2012. I have a rheumatologist that has worked with me from the beginning of all this. Initially they thought it was asthma, but i have never had any history of asthma and never smoked. So i tried all kinds of inhalers and was put on prednisone and given a rescue inhaler for the breathing issues. The ran allergy tests and i am allergic to walnut and olive trees. I don't have food allergies that i am aware of. I do have very high IgE, which is antibody produced by the immune system in response to an allergen, and means i am a very allergic person. I had been working with an allergy pulmonologist to control my severe and persistent asthma, who thought i might have MCAS. I never thought i truly had asthma because my symptoms were not typical of asthma. I get chest tightness and pain in my ribs and intercostal muscles that make it difficult to breathe. I actually have to take pain meds so it doesn't hurt so much to breathe. You are the first person that has posted with the same breathing symptoms that I have. Fortunately, I have not had an episode of anaphylaxis. I can imagine how scary that is, not being able to breath is the worst feeling in the world. The allergy pulmonologist has put me on high doses of H1, H2 antihistamines, two inhalers both with steroids, oral prednisone and i have been on Xolair since 2013. We have talked about trying ketotifen, which is a mast cell stabilizer but I am hesitant because I already on 18 other medications. I am so tired of taking meds; i am on first name basis with everyone at CVS and they greet me by name before i get to the counter, which surprises all the other customers in line. I carry epipens with me at all times since anaphylaxis is a symptom of MCAS and can be triggered by Xolair. I am currently in a flare up because I am having a lot of difficulty breathing deeply and feel short of breath most of the time. I recommend you find an allergy pulmonologist, who should definitely be on your team of doctors. I also see a cardiologist twice a year to monitor my heart as I also have chest pains, tachycardia (fast heart rate), and high blood pressure. The heart can also be affected by MCAS. I hope you find a pulmonologist that can help you with your breathing issues. You are the first person that seems to have similar symptoms to mine. Let me know how are doing.

So happy to know theres someone else with breathing issues too! I was starting to think it was all in my head since I dont get hives which is like, the number one sign you are having an allergic reaction. I was tested for asthma early this year because of my breathing symptoms, but I was found to actually have better than average breathing capacity (Im a tuba player), I think Im currently in a flare as well and Im just waiting for that to pass. I guess Im on a low histamine diet, simply because Im allergic to the foods that are high in histamine (dairy, egg, gluten, peanut, tree nuts, sesame seeds, soy, shell fish, coffee and anything with cinnamon makes me feel really sick) and I dont buy any prepackaged meals simply because I cant (although I wish I could because I absolutely hate cooking). Im really just hoping to get a diagnosis soon because I found that some people have started training dogs to alert when their mediator levels are rising and theyre about to have an allergic reaction. I currently have a service dog to help me avoid my dairy and gluten allergy and if I had that diagnosis I could start teaching her to alert to that. The dogs that have been trained to do this are able to give their handlers a 15-20 min warning, which hopefully is enough time to take benadryl in order to lessen the reaction (since thats how long it usually takes for benadryl to take effect). I will look into finding an allergy pulmonologist in my area, I did not even know those existed, thank you!

Hi, I am having different but similar struggles also. I have MCAS which I only recently figured out in the past year with an allergist and GI doctor. I have type 1 diabetes and celiac and some other more minor auto immune issues- hypo thyroid, Reynayds, etc. The MCAS for me is bouts of 3 or 4 am (always around this time) severe bloating nausea diarrhea vomiting, low blood pressure where I can’t keep my head up, sweating, flushing, shaking. I can’t stand these episodes. I started a low histamine diet but now with celiac there are so few things I’m able to eat between low histamine and gluten free. And I’ve been taking antihistamines but still getting these attacks, so just started Chromolyn Sodium and it’s now giving me really bad headaches. I don’t feel like my allergist knows enough about MCAS and there’s no one who can take me as a new mast cell patient. I’m having times of feeing hopeless and scared this won’t get better. I need to find someone who has figured out how to live with MCAS and how to deal w the headaches so I can take the chromolyn. I have skin symptoms too, but no breathing issues... it’s my gut and skin affected. Not sure what to do at this point. I work in a full time professional position and then do other part time work. Struggling...

Hi, I am having different but similar struggles also. I have MCAS which I only recently figured out in the past year with an allergist and GI doctor. I have type 1 diabetes and celiac and some other more minor auto immune issues- hypo thyroid, Reynayds, etc. The MCAS for me is bouts of 3 or 4 am (always around this time) severe bloating nausea diarrhea vomiting, low blood pressure where I can’t keep my head up, sweating, flushing, shaking. I can’t stand these episodes. I started a low histamine diet but now with celiac there are so few things I’m able to eat between low histamine and gluten free. And I’ve been taking antihistamines but still getting these attacks, so just started Chromolyn Sodium and it’s now giving me really bad headaches. I don’t feel like my allergist knows enough about MCAS and there’s no one who can take me as a new mast cell patient. I’m having times of feeing hopeless and scared this won’t get better. I need to find someone who has figured out how to live with MCAS and how to deal w the headaches so I can take the chromolyn. I have skin symptoms too, but no breathing issues... it’s my gut and skin affected. Not sure what to do at this point. I work in a full time professional position and then do other part time work. Struggling...

Did you ask your doctor about pain meds for your headaches? I have meds specifically for pain