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Mast Cell Disease: how does one get an accurate diagnosis?
Blood Cancers & Disorders | Last Active: Oct 29 2:26pm | Replies (15)Comment receiving replies
Hi, I’m sure I have mast cell activation syndrome and every doctor I’ve seen has said it’s allergies. I’ve seen an allergist at Mayo and my out of pocket for him was $700 each time I saw him and he was not helpful at all. He made feel like it was all in my head or that I was making it up. I did go see an allergist at the Arizona Asrhma & Allergy Institute and I was checked for mast cell syndrome and they said that everything was negative. Although every couple of months, I am allergic to all different kinds of foods and then I became allergic to everything that was outside in Arizona. I take over-the-counter allergy medication I have an inhaler I have nose drops eye drops. I take Benadryl and Sudafed and I still do not have consistent relief. I will say when I was at the Arizona Allergy Institute even though the test came out negative they prescribed liquid albuterol as a remedy for it, and that didn’t work either. I did notice that when I change changed my diet to Low carb high protein, I felt better.
Replies to "Hi, I’m sure I have mast cell activation syndrome and every doctor I’ve seen has said..."
I don't have the markers for mass cell activation syndrome but I'm being treated as though I have it. I tried montelukast and it worked really well but I started to have a rare reaction to it after a couple of months.
Don't be discouraged. There are 4 known histamine. There is not much known about H3 and 4 but there is ongoing research. I believe my symptoms tie in to H3 or 4.
My understanding is benadryl helps all 4 histamine which is why I slowly increased my dosage every night to build up a tolerance so I was not groggy. It is my miracle drug and I take it when I am having symptoms and it works like a charm.
I react to anything too processed and any perceived injury to my body. In other words anything unnatural. I have no allergies but have had an allergic reaction that caused my entire body to swell and welt only when I was cold. It lasted 6 months and gradually got better. I had heat stroke too many times to count because I barely sweat (I sweat more now). My teeth reabsorbed (which happens when your body believes a tooth is injured) and cracked off starting at 18 years old. I have a bladder that swells up to the point I can't control my bladder. And the list goes on and on. I am 60 now and feel the best I ever have. I also take pecid, Allegra, vitamin d and claritin everyday along with benadryl, and a round of steroids when I have a flare up (which hasn't happened for more than a year).
You know your own body. Don't let anyone say you don't!
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@payitforward0217
Welcome to Mayo Clinic Connect. I see that it’s been some time since this thread was active. Hopefully some members will chime in. You must be so frustrated trying to get symptom relief.