Mast Cell Disease Awareness

What is Mast Cell Disease?


Mast Cell Disease (AKA Mast Cell Activation Syndrome & Systemic mastocytosis) is a rare disorder that causes an excess number of mast cells in your body. Mast cells are a regular part of the immune system that exist in higher concentrations in several areas of the body, including the gut, brain, lungs, eyes & nose, skin, and circulatory system. Mast cells release a chemical called histamine, which you have likely heard of before in terms of allergies. They also release other chemical enzymes such as Tryptase, prostaglandin, & leukotriene.


Histamine is a compound which is released by mast cells in response to injury and in allergic and inflammatory reactions, causing contraction of smooth muscle and dilation of capillaries.This contraction can lead to symptoms such as bloating, loose stool, constipation, nausea, vomiting, headache, brain fog, fatigue, skin rashes, skin swelling, post nasal drip, stuffiness in the ears, nose, and head, and others.


Don’t get us wrong- Histamines, Tryptase, prostaglandins, Leukotrienes and other chemicals released by Mast Cells can be great and come in handy, especially in situations in which damage has occurred and cells need repair. Think of getting a cut on your skin- it’s these chemicals that cause burning to alert you that something needs your attention before the injury/ cut becomes infected.


If you have Mast Cell Disease, you may have experienced many of the symptoms mentioned, which can worsen symptoms of your IBS, IBD, skin conditions, allergic responses, fatigue, and more, affecting your quality of life and ability to enjoy a wide variety of foods. October is Mast Cell Disease Awareness Month as many of these symptoms can become most exacerbated in Fall, when Vitamin D is less abundant in the body, sugar is consumed more frequently in Holiday treats, and the weather is changing, triggering the immune system and increasing mast cell activity and histamine levels in the body.


Though this can be the experience of many, not everyone responds this way to histamines and other chemicals. Think of these chemicals getting dumped into a bucket, some people have an easier time dumping their bucket out, while others struggle to empty the bucket out before it gets too full, too heavy, and starts spilling all over everything around it.


Histamine and its effect on Mast Cell Disease?


The symptoms of Mast Cell Disease are very similar to those of allergic reactions and can lead to inflammation in the body that can cause temporary organ irritation and in some cases, long-term damage. Histamine is a chemical messenger released by cells in response to an allergy and inflammatory reaction to help fight invaders. It is a necessary part of the immune system. Those who suffer from Mast Cell Disease tend to be sensitive to histamine as it can cause a cascade of responses, as previously mentioned.



Where is all this histamine coming from?


Though we often think of histamines coming from flowers blooming and trees shedding leaves as seasons change, histamines can be released into the environment from plant pollen, it is abundantly available in many foods, released by the body in times when adrenaline increases with any physical stress on the body (strenuous exercise, internal or external injury, during flights), during times of extreme mental and emotional stress, and during hormonal changes such as times of the month when estrogen is higher like the week before a menstrual period. Histamine is often higher and moves into the gut more easily in the presence of inflammation in the body in cases of Dysbiosis, Small Intestinal Bacterial Overgrowth (SIBO), Small Intestinal Fungal Overgrowth (SIFO); chemical reactions to toxins, medications, supplements; and synthetic or environmental chemicals, just to name a few.


How is Mast Cell Disease Diagnosed?


Many may have symptoms of histamine intolerance, but may not meet criteria for a Mast cell Disease diagnosis. According to The Mast Cell Disease Society, some ways your care team may diagnose Mast Cell Disease can include:

  • Testing blood or urine histamine levels

  • Testing blood or urine Tryptase levels

  • Testing urine prostaglandin levels

  • Assessing for one’s positive response to histamine lowering medications

  • Assessing for an elevated number of Mast Cells during a bladder biopsy during cystoscopy or luminal GI tract biopsy during endoscopy

  • Assessing for presence of typical skin lesions

  • Performing a skin biopsy demonstrating characteristic clusters of mast cells

  • Performing a bone marrow biopsy


Who is at greater risk of Mast Cell Disease?


This is a rare disease that can be found in children or adults and affects men and women equally. Those with the greatest risk are those with the KIT gene mutation. If present in children, it appears within their first year of life.


Complications of Mast Cell Disease?


There can be some long term effects caused by Mast Cell Disease. Complications include anaphylactic reaction, rapid heartbeat, fainting, loss of consciousness, and shock. Blood disorders like anemia and poor blood clotting, peptic ulcer disease, reduced bone density, and possible organ failure.


How can I manage my Mast Cell Disease or Histamine Intolerance?


Though those who suffer from histamine sensitivity, histamine intolerance, and seasonal or situational allergies will benefit from lifestyle changes that can help with Mast Cell Disease, they may not need to be as diligent as those who have been diagnosed with a full-blown Mast Cell Disease. Some of these lifestyle changes that can help decrease symptoms include:

  • Dietary changes to support your #GoodGut in healing and reducing reactivity to histamines- we’ve outlined main points for you below!

  • Reducing exposure to sources of excessive histamine release

  • Consider swapping very high intensity or strenuous exercise with slower, less adrenaline-rasing types for a few months to reduce histamine release.