This is my mystery story of misbehaving mast cells.
I share this story because mast cell disorders typically go undiagnosed for many, many years. I don’t know if I have mast cell disorder, but I hope telling my story will help someone who does. My primary care physician believes that I have Mast Cell Activation Disorder, but the diagnostic criteria for that disorder are still evolving.
When I began to have symptoms in response to food, medicine, and environmental triggers, I gradually realized that many symptoms seemed oddly related to histamine release. My doctor agreed to test me and we discovered that I had elevated serum tryptase, a marker for mast cell disorders. I also had a mild elevation in serum histamine. Even though I ate a low histamine diet, I still had too much histamine floating around in my blood stream.
Histamine is released by mast cells in addition to many other chemical mediators that can cause inflammation, pain, and general havoc in the body. The elevation in histamine would generally be associated with classic IgE allergies. However, I have none and my IgE levels are stunningly perfect. My serum tryptase level was just above the line where it could be one indication of mastocytosis (several are required for the diagnosis), but was not fantastically elevated as it can become is these disorders.
People with mast cell disorders respond to a wide range of triggers, which often includes environmental chemicals, foods, temperature changes, medicine, smells, stress, viruses and fungi, and on and on. This is not an IgE mediated response – the mast cells are trigger directly – although it can occur concurrently with IgE mediated allergies and disorders.
In Mastocytosis, the problem can be making too many mast cells or having incorrectly shaped cells. Very little is understood about Mast Cell Activation Disorder, which shares symptoms with Mastocytosis, but not the usual clinical markers are not always present. It’s theorized that in Mast Cell Activation Disorder, for unknown reasons, one’s mast cells become hypersensitive, ‘behave badly’, and thus are easily triggered to release their contents.
Mast Cell Disorders are not the same as Multiple Chemical Sensitivity. But some people with MCS may be incorrectly diagnosed and actually have a mast cell disorder. In his article called The Role of the Brain and Mast Cells in MCS, Dr. Gunnar Heuser, MD described how he tested a number of his MCS patients for markers that indicate mastocytosis or a mast cell activation disorder. A surprising number turned up positive. Dr. Heuser postulates:
“…that chemical injury can trigger a mast cell disorder which in turn can cause MCS.”
The renown MCS expert William J. Rea, M.D., F.A.C.S., F.A.A.E.M., from the Environmental Health Center in Dallas says,
“…mast cell disorders play a large role in chemical injury and it would be worthwhile for most suffering from EI to be tested for mast cell dissociation, as there MAY BE treatments available that might be helpful in managing symptoms or even resolving the condition completely.”
The long list of symptoms associated with mast cell disorders can be found in the article All About Mastocytosis at the The Mastocytosis Society. Some people are called “shockers” because they go into anaphylactic shock when triggered, whereas others are called “leakers” because their mast cells slowly leak their contents causing chronic symptoms. The symptoms can range from mild to severe. There is a medical treatment that helps most people reduce the symptoms of mast cell disorders.
Since limiting my exposures to my particular triggers and taking medications recommended for mast cell disorders for a year, my serum tryptase level decreased, but did not re-enter the normal range. It remains elevated to this day. Although my health has generally improved by staying away from triggers, I remain sensitive when exposed. My triggers include aromatic hydrocarbons (like diesel fumes, charcoal lighter fluid, moxa, etc.), perfumes and fragrance, medicines like morphine and procaine, and many foods. I’m not a “shocker” but have more of a chronic response like a “leaker”.
The challenge to getting a proper diagnosis for a mast cell disorder is that there are literally only a handful of mast cell disorder specialists in the United States. Mastocytosis itself is considered rare and few doctors are familiar with the disorder. Mast cell activation disorder has yet to even be classified as an actual diagnosis although suggested diagnostic criteria have been published in the journal International Archives of Allergy and Immunology in May 2011.
To learn about mast cell activation disorder and mastocytosis and see a complete list of symptoms and triggers, visit The Mastocytosis Society.
To connect with others who have Mast Cell Activation Disorder or Mastocytosis visit these forums:
