WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, April 13, 2012

Mastocytosis +Mito

Over the years on various boards I hear the term Mast cell disorder frequently.

I have been poking around trying to learn about Mast Cell disorders and find there just isn't a lot of information out there.

The best informational resources have been blogs or The Mastocytosis Society website.

On this blog, Surviving with Systemic Mastocytosis,the Author lists the following "triggers":


Triggers are stimuli that can set off a mast cell response, potentially leading to a mast cell attack. Avoidance of various triggers (things that can set off a mast cell attack) can do much to improve quality of life and reduce the need for medication, but that is often easier said than done, as the triggers can be almost anything, including:

· Alcohol

· Friction

· Anesthetic agents

· Heat

· Antibiotics

· Infection with viruses, bacteria or fungi

· Bacteria or fungi

· Mold

· Certain foods


· Cold

· Narcotics

· Colors & flavorings in foods

· Perfumes

· Colors & flavorings in medicines

· Pesticides

· Emotional upset

· Plasma expanders (i.e. dextran)

· Environmental toxins

· Preservatives

· Exercise

· Room freshener sprays

· Fatigue

· Stress

· Fever

· Sunlight

There is great variation from person to person in what is a trigger, and even within the same person. The triggers may change day-to-day - that is, heat may set off an attack on one day, but not on other days. The above list is not complete, but is meant to show the wide range of triggers that affect mast cells.

WOW- If I knew nothing about all this Mito stuff, if I had never heard of it, I would think Abby fits the systemic Mastocytosis picture a lot better. Interestingly enough, there are quite a few patients with Mito who also have some sort of Mast Cell Disorder-

Here is a quick definition of Mastocytosis via the The Mastocytosis Society page;


Mastocytosis has been defined in the literature as an abnormal accumulation of tissue mast cells in one or more organ systems. Broadly separated into two categories - cutaneous mastocytosis (CM) and systemic mastocytosis (SM), the disease occurs in both children and adults. CM is a benign skin disease representing the majority of pediatric cases. It often resolves during puberty and is not associated with systemic involvement, but because only a small subgroup of people with CM display a KIT mutation, not much is known about the factors that contribute to the accumulation of mast cells in the skin. Alternatively, most adult patients are diagnosed with SM. Skin involvement, typically urticaria pigmentosa, is common in adult patients and can provide an important clue to accurate diagnosis. In all SM categories, the common histological marker is the clustering of mast cells in visceral organs.

It is considered a rare disease. The NIH is currently studying nDNA looking for mutations that cause these disorders.

The list of symptoms is big- and depends I think, on the severity and type. Systemic Mastocytosis is consider far more grave then the cutaneous form(if I am understanding correctly) and in the pediatric population most will outgrow the cutaneous varieties.

A list of some Symptoms;


What we know about Systemic Mastocytosis is that in many cases, it is a neoplastic disease, meaning that it involves new or abnormal cell growth. (Please note - this may not apply to most cases of pediatric and/or familial Mastocytosis.) In this case the cells involved are mast cells, which are normally contained in body tissues. Mast cells release certain mediators, or chemicals, of which one is histamine, into the body in response to certain events. People with Systemic Mastocytosis develop an increase in the number of mast cells, or they develop abnormally shaped mast cells, which may not function properly. In addition, the mast cells fail to die off when they are supposed to, further increasing the total mast cell burden. This die off is called apoptosis. Apoptosis is programmed into normal cells, but in people with mast cell disorders, the mast cells may fail to die off, resulting in an increased number of mast cells in the body. When these mast cells are triggered, they can degranulate, and release their contents all at once, or they can slowly leak their contents in response to a trigger. This can cause many acute and
potentially serious symptoms, which include the following:

· Abdominal pain
· Hives & other rashes
· Anaphylaxis
· Inflammation of the esophagus
· Blood pressure changes & shock
· Intestinal cramping and bloating
· Bone pain (mild to severe/debilitating)
· Itching, with and without rashes
· Chest pain
· Liver, spleen and other organ involvement
· Cognitive difficulties/brain fog
· Malabsorption
· Degenerative disc disease
· Migraine headaches
· Diarrhea
· Muscle pain
· Dizziness/vertigo/lightheadedness
· Nausea
· Faintness
· Osteoporosis/ Osteopenia
· Fatigue
· Peripheral neuropathy and paresthesias
· Flushing
· Rapid heart rate
· Gastroesophageal reflux
· Vomiting
· Hematological abnormalities

People who have been told they have Mast Cell Activation Syndrome or Disorder (MCAS/MCAD) may have a normal, or nearly normal, number of mast cells. However, their mast cells "behave badly" - that is, they are easily triggered to release their contents, which results in many of the same symptoms that people with Mastocytosis experience. The danger of anaphylaxis and shock is present with MCAD/MCAS, but unlike Mastocytosis, this syndrome may not have the potential to progress to a more aggressive or malignant stage. Nevertheless, people with either Mastocytosis and MCAS/MCAD can be either very stable or extraordinarily ill on a day-to-day basis, and managing the unpredictability of the Mast Cell Diseases and their symptoms can be quite challenging.

This list crosses over with symptoms from other disorders diagnosed in our family. What I am finding so interesting about this set of diseases is that if I compare it's symptom list with a list of Mito symptoms, Abby fits this so much better.

It is possible to have both. Something to learn about for sure. It is challenging for a patient to find a Specialist who understands this disease process enough to rule it in or out. The Mastocytosis Society page does have a list of Specialists.

Learning something new on this journey every day.


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