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Mast cell disease is very rare and therefore it can be difficult to find a physician who knows and understands the disease. However, this is slowly changing and an increasing number of physicians are becoming aware of mast cell disease, particularly Mastocytosis. 

Mastocytosis has a specific set of diagnostic criteria which helps physicians diagnose the disease with confidence. MCAS is diagnosed more by process of elimination and therefore many physicians are not comfortable with a confident diagnosis. 

Generally, most specialists require a referral from a family doctor to book an appointment. It is always a good start to speak with your family doctor first if you suspect some type of mast cell disease. Please remember that Mastocytosis, Mast Cell Activation Syndrome (MCAS), Hereditary Alpha Tryptasemia (HAT) and Idiopathic Anaphylaxis (IA) are quite rare so many family doctors may be unfamiliar with how to test, diagnose and treat these diseases. Our website offers some information on how to prepare for a visit with your doctor.  

Here is some help in determining what type of physician to see:

  • Cutaneous Mastocytosis or skin involvement is best treated by a Dermatologist
  • Allergic type reactions are best treated by an Allergist or Immunologist
  • Systemic Mastocytosis or other system involvement is best treated by a Hematologist, Oncologist or Internist (Internal Medicine).

We are including two recent articles links, written from a large group of physicians stating all diagnostic criterias that you will wish to discuss with your doctor, since many other diseases may mimic mast cell diseases.

Article 1 - Selecting the Right Criteria and Proper Classification to Diagnose Mast Cell Activation Syndromes: A Critical Review

Article 2 - Updated Diagnostic Criteria and Classification of Mast Cell Disorders: A Consensus Proposal