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Replies to "I can understand how you feel about not wanting to live with your symptoms and not..."
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...