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!