I had my first allergic reaction to a monocot nut when I was a child. My reaction was classic tongue and lips burning, itching, swelling, allergic rash around mouth, etc. after ingesting a drink made with the specific nut milk to which I am allergic. I was officially diagnosed with the allergy to said nut after allergy testing when I was in my early teens. I subsequently had a few more allergic reactions throughout the next 20+ years, all similar, some also with breathing difficulties, always only with ingestion of coconut or with it touching my tongue/mouth/face. I am not allergic to any other nuts or seeds.
Last year I was repeatedly exposed to the same nut product in various forms (edible and cosmetic forms) and I started reacting to physical and airborne contact, which caused anaphylactic shock and hospitalization. I have subsequently had other anaphylactic reactions requiring hospitalization, assumed to be physical or airborne exposure to the same specific nut (products containing that specific nut in the immediate vicinity).
Earlier this year I had general allergy skin testing done by a well-respected allergist (head of allergy at a top hospital), including to the dried nut in various forms. I didn't get any classic wheal and flare reaction to anything, including to the histamine control, but my skin was hot (could feel heat radiating from me), red, and extremely itchy all over. My eyes were red, itchy and watering. My scalp was incredibly itchy, as was my face, and especially my nose and eyebrows. I had not had any antihistamine products, cold medications or antacids in the 10 days prior to the test. The allergist gave me an anti-histamine to control the reaction (cetirizine), but told me that he thought I had most likely outgrown my nut allergy as I did not react to the SPT. However, he could not tell me what I was reacting to -- hypothesized possibly heat, my own sweat, or idiopathic reaction. My itchiness and redness calmed down considerably about 20-30 mins after taking the antihistamine in his office, but did not go away completely. Later that same day (a few hours later), even under antihistamines, I had hives erupt all over my arms where the testing was done (with a hive at almost every prick site, including those testing for other food and environmental allergens), all over my chest, and a bit on my stomach. The hives lasted well into the evening and still had a bit remaining the next morning. I took pictures of the hives and showed them to my family doctor who confirmed that I had definitely had an "allergic reaction to something" (confirmed allergic rash, as opposed to other types of rash).
I have since developed a systemic autoimmune dysfunction which has caused widespread muscular and skeletal pain and burning, muscle weakness, and significant mobility issues, which my family doctor believes is linked to my repeated anaphylaxis.
Immunocap testing to the specific nut came back negative, base IgE and base tryptase is abnormally low. High CRP and ESR. All other bloodwork came back normal or close to normal, including CBC, except mean cell hemoglobin concentration, which was low and MCH was at the low limit of normal.
Does anyone have any idea what could be going on? Could my allergy have changed or evolved or caused/turned into something else? Could a deficiency in tryptase or a blood/immune system/other disorder be causing these strange symptoms and reactions that seem to defy the "normal allergic response"? All the doctors I've spoken to, including specialists, are miffed by my case. Please help me figure this out.