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Mast Cell Activation

Blood Cancers & Disorders | Last Active: Nov 25, 2023 | Replies (117)

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@thenerdybunch

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!

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Replies to "So happy to know theres someone else with breathing issues too! I was starting to think..."

My allergy pulmonologist is at a large university setting. There is a data base of physicians that treat Mass cell disorders at http://www.tmsforacure.org. It’s the website called The Mastocytosis Society. If you can’t find a specialist in your area, maybe you can call one of the physicians closest to you and they can refer you to a someone in your area. Every doctor has different training experiences, just like I am a physical therapist and I know how to treat certain diagnoses that another PT may not simply because my internships were different than theirs and I may have come across a patient with an uncommon problem, but my experience taught me how to treat them. Please keep looking for a doctor that can help you. I know it’s frustrating. It took me 6 years to get a maybe diagnosis. I was an addicted runner who ran 6 days a week, 9-10 miles. Having that taken away from me sent me into a major depression. Don’t give up even though this is the suckiest (yes, that’s professional jargon 🙂 ) disease.