Need advice on getting a diagnosis

ketotifen and ranitidine are fairly standard treatment for mast cell problems, the ketotifen can take ten weeks to work fully though, serevent it also very useful as it's a beta 2 agonist which have mast cell stabilising properties.

This is a handy food guide although things can vary from person to person.

https://www.jillcarnahan.com/downloads/HistamineRestrictedDiet.pdf

I would also suggest garlic supplements as allicin has a mast cell stabilising effect.

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1748-1716.1958.tb01617.x

As well as green tea.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764846/

and rutin https://www.ncbi.nlm.nih.gov/pubmed/18958421

dear kelly

i was suddenly diagnosed with mast cell leukemia and agressive systemic mastocytosis in 2016. thinking back i some symptoms but allways put them off. i was planning some surgery but just didn't feel good. my physician did some bloodwork .... found low platlets and low hgb and a few other irregularities. from that i had a bone marrow biopsy and  blood work up..... but within three weeks my  symptoms became severe and i was hospitalized for 5 day chemo which i was told would probably kill me but no treatment meant certain death. i survived that and went on to have more chemo and a bone marrow transplant from my sister. after 6 months i was sent home to prepare my affairs as the bmt didn't work. it took longer but it did start to work . i am on zantac and reactine for the mastocytosis as well i am aware there is a new drug called midostaurin that has proved helpful in some cases..... i could not tolerate it. although i never had many symptoms before i was diagnosed just mainly fatiue and night sweats ..... i do have most of the mastocytosis ones now... which is weird. anyway i am told that my case is quite rare and i am a miracle. i was having trouble with a cough and mucous as well and now use the steroid inhaler which has helped alot. if your syrum tryptase was elavated and your platlets and cbc or liver enzymes are abnormal ... i would suggest you ask to see a hematologist and have a   bone marrow ASAP. thats how my treatment couse started..... but as i mentioned my case is extremely rare. hope this helps. good luck 

Hello! I am currently in the process of getting diagnosed as well. I have trouble with frequent allergic reaction that cause chest tightness, coughing, difficulty breathing, flushing/hot flash, dizziness, and makes me feel lightheaded. It all started about three - four years ago with dairy, at first it was just some uncomfortable chest tightness, but not enough to actually get me to stop eating dairy (I was in denial) but over time this became anaphylaxis and I have progressively become allergic to many more things (dairy, egg, gluten, peanut, cashew, sesame, shell fish, coffee, green beans, peas, certain cleaners, certain strong smells and sprays, plus some that i have not been able to identify). I went to four different allergists who kept telling me that I was not allergic to anything (despite the fact that these symptoms mostly presented themselves when I ate certain foods, which are the majority of my triggers). Finally I went to see a doctor in Houston that was recommended to me by a doctor in Mexico and he was the one who brought up mast cell activation syndrome. We have done a tryptase blood test (which simultaneously rules out mastocytosis and gets my baseline) but we haven't been able to get my tryptase after a reaction, mostly because I dont go to the hospital after episodes that require epi (Im a broke college student and the hospital costs way too much money) so I keep forgetting to go get my blood drawn. We also did a 24 hr histamine urine test which came back normal and my doctor tested for the kit mutation (this is for clonal MCAS but there is also non clonal or idiopathic MCAS which means it is not caused by a mutation). My doctor told me that many patients get normal test results even though they are clearly showing symptoms, I was put on ranitidine , fexofenadine (aka allegra ), and montelukast and they have been helping a lot to make my episodes less severe and I went from having a reaction about twice a week to maybe once every two weeks or so. I was told that because I responded to medication it is very likely that I have MCAS, I was told that the next step is to do a gastrointestinal biopsy which is a new diagnosis technique developed by brigham and womens hopsital.