Mast Cell Activation

Hello, my daughter was diagnosed about a month ago and currently sees an allergist who has her on Allegra and Zantac and a low histamine diet. She's allergic to nickle which eliminates a lot of the foods so she is left with not a whole lot to eat, she has also already had reactions to some of the low histamine foods. She is becoming very thin and her hair is falling out, her heart races and she has vibrations throughout her whole body. Dr afrin is not even putting anyone on a wait list (even though we live in the area incase of a cancellation) because he is scheduled out to 2019. Mayo has said they aren't taking any more patients. Does anyone know any doctors that have expertise in this life robbing disease?

Have you tried homeopathics? I started taking Apis10M when ever i reacted and it did wonders l but i recommended having a consultation yourself as everyones case is different. I take Ranitidine anD histimaine LEVIX AND HAVE BEEN GETTING ON SO MUCH BETTER

Thanks for your input, any information is appreciated. I will make note of these things

Hello @lean1, and welcome to Connect. I'm so sorry that your daughter is going through this. I do hope @danmlee @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, will join in this conversation too.
@judeeo, I noticed your mention of mast cell disease in another group; do you have any insight for @lean1?

Here's a link to The Mastocytosis Society, that has detailed information: https://tmsforacure.org/overview/
From what I read mast cells can result in severe allergic reactions; @lean1 how is your daughter managing with the allergies?

When I last saw Dr Butterfield at Mayo more doctors and physician assistants were being trained in Masto and related conditions. My symptoms vary almost daily One day I can eat strawberries and the next I'll have a reaction....It's a crap shoot for me. With my low iron and needed protein and calcium for bones...I usually choose to suffer any consequences since I need the other for over all health and well being.

Yes the allergies are severe. She had to leave her job because she became allergic to the tools, soaps, gowns etc. she was a blistering mess. She has reactions to water because of nickel in the pipes as well as when she touches door knobs, shopping carts, eating utensils etc. she has had to discontinue all her supplements she was taking, important ones as she has the rare mthfr gene mutation and also has thrombophilia. Foods have been a challenge. She has a small child and she suffers from a lot of fatigue and joint pain so I try to help as much as I can. Thanks for all your responses

How terrilbe you are probably desperate by now could i suggest you contact theothersong.com it is a state of the art homeopathy centre in India they are incrediable at finding cures. They may be able to direct you to a high up homeopath in your area.

@lean1, I hope somehow, someway, your daughter will find someone who can help her get relief. I remember seeing one of those news type of shows on TV a while ago (years ago) that said the things they use in building houses can cause severe allergies. If I recall correctly once sensitized the allergies get worse and people who had them had to move into homes with no carpeting, and all natural material. I cannot imagine going through all of this. She is so fortunate to have you there for her.
JK

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?

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.