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Does anyone know about the progression of mast cell activation disorder? I'm back speaking about my daughter. Last October she was a vibrant young wife and mother and now she is a shell of a person. Her list of low histamine/Nicole free foods is getting smaller by the day due to reactions. The sun and heat make her react. She has gastritis and severe constipation where she is having to do daily enemas. She is on quercertin and just started keto fin ( my spelling my be totally wrong on these) but she started that yesterday and got blisters on her lips and a tight throat so I fear she may be allergic. She's allergic to all the supplements she used to take and when I spoke to her last night she told me the only time she's not in pain is when she sleeps. She's very depressed. I feel like she's slipping away. She has an appointment in august at Mayo but my fear is she mentally won't make it that long. Why does it seem like drs don't take this seriously?
Replies to "Does anyone know about the progression of mast cell activation disorder? I'm back speaking about my..."
Okay, Please look into symptoms of salicylate intolerance. Many people with MCAS are allergic to asprin which contains salicylates. Salicylates are in many fruits and vegetables. Nearly all herbs and spices are high. I had to go on low salicylate low amine diet and I would be dying right now if I had only reduced histamines. I had all of these symptoms like your daughter and got way, way better after lowering my salicylates. I will list some of the things I eat that keep me from having hardly any symptoms. First meal is usually hamburger patty with salt and garlic powder only and no other spices, and green beans. Second meal would be sirloin steak or chicken with either small amount of sweet potato or green beans or broccoli. There are other low salicylate vegetables she could eat but until you learn everything yourself which is confusing at first this should help her symptoms pretty quickly if this is all she eats for about a week. I also eat clarified butter with meals which is adds flavor and is satisfying. I don't know if you'll see this since your post was so long ago but maybe it will help someone else.
Sorry I forgot you need to peel all vegetables and fruits because the skin contains very high salicylates. Also toothpaste would be very high if it has any sort of mint flavoring. I also forgot to add that many pears are low salicylate. The kind I eat are the bartlett pears peeled but I do think they contain histamine. I've lowered my histamine load through diet for so long that i can eat these if i want to. I'm so sorry to hear about your daughter and don't know about any doctors there but if you did not know about salicylate intolerance it would be well worth a try to do this diet to eliminate the horrific symptoms your daughter is experiencing. Hope she has found a doctor and some relief by now.
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Hi @lean1,
I'm truly sorry to learn about your daughter, and as a mother I can imagine how worried and helpless you must be feeling.
I found this journal article online, and I would sincerely encourage you to view it:
"Pharmacological treatment options for mast cell activation disease" http://bit.ly/2uwUcmj
Hang in there, @lean1...and "lean" on the Connect community; we're here to support you.