Hello, Robin!!!

I'm new to the forum as well. I'm kind of in the same situation as you. I have had symptoms since I was eleven. Now eighteen, we are just now figuring out that all of my symptoms are most likely mast cell related. I have many of the symptoms, including Anaphylaxis. I've gone into Anaphylaxis several times, and it's very scary!! One of the times, the shock was triggered by something as simple as a strong smell. It's very frustrating, but I've quickly learned that there are many people out there that are willing to help.  

Brynn Kaitlin

Hi Robin,

  So sorry that your father suffered being undiagnosed for all those years!  It took me 16 years to be diagnosed, so I understand how frustrating it can be.

  As for your situation, I would recommend you see a mast cell disorder specialist/researcher as soon as you can.  The most comprehensive place to go would be in Boston at Brigham and Womens hospital.  Dr. Cem Akin and Dr. Marianna Castells have started a Center of Excellence for Mastocytosis there.  They are allergist-immunologists, and they might be interested in the hereditary possibility.  About 20% of mast cell disorder patients do have allergies, the same as in the general population.  Dr. Castells is an expert in rapid desensitization, so that may be of interest to you.  There are also GI docs and others associated with this center who consult with patients depending on the symptoms.

  If travel to Boston isn't possible, post your location, and someone might know of a doctor in your area.  Or, if your allergist is willing, he or she can contact Dr. Castells or Dr. Akin and find out what tests to run and how to best medicate you.

  I'm not sure whether or not the C-Kit mutation can be found in a blood test now or a bone marrow biopsy must be done.  It seems that not all labs and/or doctors are proficient at finding it, so it's important to have any sample tested by an expert.

  In the meantime, if your problems are mid-day, what are you eating for lunch?  Are you on the low histamine diet?  It might help you react less.  Keeping a food and symptom diary might help pinpoint any foods that are causing you problems.  

  The foods that cause almost everyone problems are leftover, processed, canned, and cured/smoked meats.  Fish can be a problem, even if it's fresh.  The bacteria in leftover meats and fresh or leftover fish produce large amounts of histamine which can cause anaphylaxis.  To protect against this, food can be portioned and frozen after a meal and then thawed for eating at a later time.  Refrigeration doesn't stop the production of histamine, but freezing does.  It's best to eliminate all fish and seafood from your diet until you're stable.

  If you're still shocking, then you're under-medicated.  People with systemic mastocytosis and those with mast cell activation problems (without SM) take more antihistamines than you're taking.

  Many people take 180 mg. of Allegra, twice daily, as well as 300 mg. Zantac, twice daily.  If there are problems in between, Zyrtec or Pepcid are added or Benadryl or hydroxyzine (Atarax).  I was told to alternate, so I take Allegra in the a.m. and zyrtec at night.  I was taking Zantac in the morning and Pepcid at night, but I've recently switched to only Pepcid.  My doctor told me I can take 40 mg. Pepcid at a time.  

  I would suggest you ask your allergist what the maximum dosages would be for you and increase what you're taking.  Since you're having GI symptoms, you might want to try a mast cell stabilizer, like gastrocrom or ketotifen.  Your allergist can prescribe these.  I had to start with a small portion of one vial of gastrocrom and work up from there.  Now I find that 2 vials, a.m. and p.m., keep my GI tract mast cells stable.  Some people go up to 8 vials per day. (They're mixed with water to drink.)

  If most of your symptoms are GI, you also could have a disorder called Mastocytic Enterocolitis.  It is a proliferation of mast cells in the GI tract, and it is treated with gastrocrom, probiotics, and antihistamines.  It's diagnosed by biopsies during a colonoscopy.  A mast cell disorder expert would check you for all possible mast cell problems.

  It must be especially stressful for you with your father's history, so don't wait to be in touch with an expert.  With a normal tryptase, the chances are good that you don't have SM, but you could have a different mast cell activation problem that can and should be be treated.

  If you have any other questions, please do post them.  If you want to post the names of the tests that have been done, people will comment if you need to have more ordered.