I think I might have mast cell disease: FAQ

What kinds of symptoms do mast cell patients have?

Mast cell disease can cause a variety of symptoms. Each person has their own unique constellation of complaints, and they can vary from day to day. Mast cell patients often have allergic type reactions to many things. They may have had anaphylaxis in the past, but that is not always the case.

What kind of doctor should I see if I think I have mast cell disease?

Due to the fact that mast cell disease can affect multiple body systems, it is managed by doctors of multiple disciplines. Immunologists, dermatologists, gastroenterologists and hematologists/ oncologists all may treat mast cell disease. It really depends who is familiar with mast cell disease in your areas. Immunologists are often the first stop for patients investigating mast cell disease.

Will any doctor know about mast cell disease?

No. Mast cell disease is uncommon. Many doctors are only aware of the types associated with pathologic rashes (cutaneous mastocytosis) or proliferation of mast cells in the bone marrow (systemic mastocytosis.)

How do I get determine if I have mast cell disease?

Labs for diagnosing mast cell disease include serum tryptase (a blood test), n-methylhistamine (24 hour urine test) and D2/F2a prostaglandin (24 hour urine test.) These tests are time sensitive for many patients and have special handling in most labs. Depending on these results, a bone marrow biopsy may be needed.

Can I have mast cell disease if my tryptase is normal?

Yes. 15% of patients with systemic mastocytosis have normal tryptase levels, and the majority of MCAS patients have normal tryptase levels.

How is mast cell disease treated?

Treatment generally focuses on the symptoms. The most common treatments include antihistamines, leukotriene inhibitors and mast cell stabilizers.

Will I feel better with treatment?

Most people feel better with treatment than without, but how much each person recovers is individual. Lifestyle modifications and medications can help many people live a full life.

Is mast cell disease curable?

No. Patients may have a remission from symptoms, but they will always have mast cell disease.

1 Response

  1. Holly Slawter May 20, 2016 / 12:13 pm

    I should have explored more before writing! Your blog is so beautifully organized! Please only respond if you have anything to add…or the time to do so. I will begin with an immunologist

    Holly

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