Symptoms of mast cell disease

The following is a generalized list of common symptoms associated with mast cell disease. It is not comprehensive and does not include laboratory or associated diagnoses.

General: fatigue, malaise (“being out of it”), weakness, severe unprovoked sweating, weight gain or loss

Skin: Rashes and lesions of any kind, itching, flushing, angioedema, stretch marks, dermatographism, poor wound healing, alopecia, abnormalities of finger or toenails

Eyes: Irritated eyes, red eyes, excessive tearing, dry eyes, difficulty focusing vision, lid tremor, sensitivity to lightness, including sunlight, general inflammation

Ears: Inflammation of the ear, “ear infections,” hearing loss, sensitivity to sound, ringing in the ears

Mouth/throat/sinuses: Generalized pain of several qualities, but often burning, ulceration, “canker” sores, swelling (angioedema), dental decay, abnormalities in taste, taste of metal, throat discomfort or irritation, need to clear throat frequently, post nasal drip, nose bleeds, irritation of sinuses, sinus congestion

Respiratory: laryngitis, bronchitis, pneumonitis (frequently confused with pneumonia), recurrent cough (usually dry), shortness of breath, wheezing

Cardiovascular: lightheadedness, weakness, dizziness, vertigo, fainting, high or low blood pressure, palpitations, rapid heartbeat, abnormalities in heart rhythm, chest pain, hemorrhoids, edema

Gastrointestinal: abdominal pain, diarrhea, constipation, difficulty swallowing, swelling of any part of the GI tract, nausea

Neurologic: Headache, migraine, “about to faint,” fainting, numbness, pins and needles, neuropathy, tics, tremors, seizures

Psychiatric: Anger, depression, PTSD, anxiety, memory difficulties, anxiety, panic disorders, insomnia, sleep disorders

The hallmark of mast cell disease is allergic-type reaction to a variety of stimuli. These can also occur to substances benign to most people, including scents, “hypoallergenic” materials, heat, sunlight and water. Some people experience anaphylactic reactions that require epinephrine.

References:

Afrin, Lawrence B. Presentation, diagnosis and management of mast cell activation syndrome. 2013. Mast cells.

9 Responses

  1. healy32@gmail.com November 19, 2014 / 3:46 pm

    Wow, a blackout (bingo)not LOC changes.:) Thanks!

  2. T June 20, 2015 / 9:34 am

    Yet another list of inespecific symptoms that would make any hypochondriac think fear for his life. It’s quite weird that selfcentered, neurotic, attention craving people keep giving “information” about things they no nothing about, in a completely irresponsible way. Shame on you, for buidling a website full of fearmongering nonsensical rubish.

    • Lisa Klimas June 20, 2015 / 2:43 pm

      Thanks for reading!

    • Fred January 5, 2016 / 1:28 am

      What a very one sided ignorant statement!

    • Annabel Ascher March 8, 2016 / 8:47 pm

      Your comment shows that you know nothing about MCAD.
      I am not a hypochondriac–in fact I avoid doctors and take no pharmaceuticals.
      Over the last 5 years my health has been systematically destroyed by a misunderstood disease with no cure. The only way to manage it is to change my diet, way of life, everything.
      I went on this site because in the last week I have suffered from sudden deafness in one ear and now a knee so swollen I can’t walk.
      I don’t use this for sympathy, and in fact work through the pain every day so I can run my business.
      You owe Ms. Kimas and all her readers an apology.

  3. Karla June 21, 2015 / 12:01 pm

    My daughter has Mastocytosis! She was dignosed when she was less than 1 yr old. We did a byopsy to find out what the brown spots were on her skin, that were causing her to scratch, then they would look like blisters.
    She can have a deadly react to Codine. To many bug bites, to hot or to cold of water. The reaction releases the Histamine in her system which can slow or stop her breathing.
    She is now 20yrs old.

  4. sandie December 23, 2015 / 8:52 am

    Hi, I stumbled on to your blog and I am glad I did. First, a hearty thank you for posting your findings and story. I have been searching for the needle in the haystack or the root cause for quite some time now. Through 23&me I am looking at A1298C – BH4 dysfunction – CMS mutation – (HEDS)- mast cell activation disorder. Looking back at my childhood and adult life I had that “light bulb” moment of ah ha and maybe this is the reason for… whatever reaction or outcome. When I was a child I had to wear a brace on my arm after being stuck by a car. I can still remember the sensation of the brace (even now I am rubbing my arm to stop/block the memory) and how I literally howled, whined and complained that the brace had to come off. The brace was worse for me than the pain of the injury. For those that are slamming you, saying your are fear mongering have no idea what some of us are going through. I thank you for your blog. Currently, my daughter is experiencing odd physical and psychological episodes that seem to randomly appear and dissipate. One thing is common with every “attack” is the hives. She breaks out in hives, cannot stand her clothes touching her (hypersensitive), sounds, smells, everything becomes explosive to her. Her first blood test showed elevated white blood cells. Her follow up she was shown to have hashimoto’s thyroiditis. I am reading now about the elevation of white blood cells, the antibodies of hashimoto’s thyroiditis and mast cell activation. Wish me luck. I will also attempt to contact Dr. Afrin. Again, thank you.

  5. Rebecca April 28, 2016 / 8:28 am

    It’s nice to know I’m not crazy! I have been extremely ill since October 2015. I was given mutiple diagnosis to explain my health issues, but none of them quite fit. Finally at the end of December I had an allergic reaction to something, but we couldn’t figure it out, and I spent several hours in the ER . This same thing happened a week later, but we were unable to find the trigger.
    I have a wonderful primary care physician and he sent me to an allergist at another facility . She actually listened to what had been going on since October and said I think you have a syndrome I have dealt with before. She did some testing and found out I have MCAS, and now a liver enzyme that is suppressed .
    I’m so glad I found your blog!

  6. Susan July 7, 2016 / 3:47 pm

    I could really use more information on Mast Cell Disease and clothes sensitivity. My daughter had Ehlers Danlos and has not been able to wear regular clothes for a decade. Why haven’t one of her docs mention Masts Cell to me before? Help!

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