Mast Cell Disease: how does one get an accurate diagnosis?

There’s A prescription medication called Singulair. montelukast is the generic name. It’s a once a day pill that is well tolerated that helps stabilize mass cell activity. It is used for serious allergies, sinus problems, asthma and mast cell activation. It is not a miracle drug, but should at least be part of the arsenal in the treatment of this difficult to diagnose and difficult to treat condition. Knowing your triggers and avoiding them is the most essential part of controlling the disease. Combining antihistamines to include histamine one and histamine two blockers can help as they potentiate each other. You may get better help at your local university teaching hospital. Wishing you better luck with your medical care. We have to be knowledgeable and assertive in getting what we need these days!

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.

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.

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!

Thank you for your response and the information. I’m happy you are feeling better. Some of the things you have experienced are mind boggling. I’ve never heard of teeth transporting. I found a histamine diet, so I’m going to follow that and hopefully it will provide some relief.