New to this, tons of questions!!
Posted , 3 users are following.
I have been, I suppose, unofficially diagnosed with mast cell activation syndrome based off my symptoms and the results of an elimination diet. I haven't been blood tested and haven't had a bone marrow biopsy yet because until I get health insurance I am paying for everything out of pocket. I have had chronic migraines and exczema since the age of 8 (I'm mid-30's now), chronic fatigue, anxiety and depression, severe GERD with diverticulitis and pleuritis, severe allergies to all antibiotics and what has appeared for years to be an allergy to nearly every darn thing I ever eat. My doctor suspected histamine intolerance and we went over my diet and I was naturally gravitating towards and craving basically every single high histamine food you can think of and I've been on a strict elimination diet which has been helping, doing an inventory of my personal hygiene and household cleaning products (I was using copious amounts of sweet almond oil which was causing a constant reaction with throat swelling, difficulty breathing, etc.) and I'm starting to feel better, but I'm still having hives, itching, exhaustion, etc. I checked out my dish soap and one of the first ingredients is citric acid and there's citric acid in basically all of my other personal hygiene products. I just bought all new low histamine hygiene products
BUT here's the thing; I cannot find lists on Google or anywhere else of acceptable low histamine dish soaps, dishwasher detergent, laundry, etc. All the homemade recipes I can find either use citric acid or vinegar. I'm about to pull my hair out. Does anyone have recommendations?
Thank you in advance for any advice!! So happy to have found this forum!
0 likes, 3 replies
katiemama
Posted
Also, I have epi pens and benedryl gels on me (allergic to the pink tablets) at all times because of sometimes random anaphylaxic reactions. I'm really trying to get a handle on this not only to end my own suffering but because I have a 4 year old and 1.5 year old and I am nowhere near the mother and wife I need and want to be with all of this going on
Any and all help is GREATLY appreciated!!!
Oh, also, when we do get insurance (which is in a few months from now) do I need to seek out a specific type of doctor to do the testing and biopsies for mast cell disorders? Thank you!!
adonnya katiemama
Posted
First of all, you need to get on a regimen of meds and not rely on the epi pen and benedryl. I am on protonix, claritin, flonase, cromolyn, and zantac. Until you get insurance, you can ask the doctor about using otc meds until you can see an immunologist, who will send you to a hematologist for the bone marrow biopsy. I have had one and it's not too bad. Don't be surprised if it comes back normal. Mine did, but my tryptase level is high as well as other tests, so my doctor was sure it was mastocytosis. I can only eat 6 foods now. As far as cleaning products, I use Seventh Generation and haven't had issues with the citric acid. I make my own soap from an organic soap base. Good luck. I had 6 reactions so far this year, and it's not a fun thing to go through.
mnisbett katiemama
Posted
I don’t personally have detergent sensitivities but I did run across a book you would be interested in. The title of the book is “My Crazy Life: A humorous guide to understanding mast cell disorders” The author has some of the most severe symptoms and triggers that I’ve seen so far, including the detergent sensitivities. She has done some pretty extensive research so I hope this will help you. Cheers!