Portrait of a Mast Cell Patient

Some bad news: There is no such thing as a typical mast cell patient. They don’t all have hives. They don’t all have anaphylaxis. They don’t all have digestive troubles. They don’t all have trouble breathing. They don’t all get itchy. They don’t all anything. That’s why these conditions are such a challenge diagnostically.

However, MANY mast cell patients:

1) are on the many-unrelated-diagnoses route. See the list of common early diagnoses in the FAQ. These conditions may be gastrointestinal, neurological, dermatologic, psychiatric, respiratory, cardiovascular, endocrine, hematological…

2) experience unexplained symptoms (frequently which they learn to either accept as “normal” or downplay for the reasons below). Perhaps they have chronic headaches/migraines, constipation or diarrhea (many alternate between one and the other), early “arthritis,” or other symptoms unexplained by their chart. Tests typically all come back normal, and many of these patients are “diagnosed” with hypochondria, or even with Munchausen’s.

3) have “that sounds crazy” symptoms. Most of these patients have been conditioned not to tell others, especially medical providers, about certain unusual symptoms. (“This entirely different organ system thing happens around bowel movements.” “I feel sick when I’m around loud noises.” “I feel internal vibrations. It’s like I’m shaking inside, but you can’t see it.” “I have unexplained episodes of cold and shivering.” “I start to get ‘anxious’ if I’m around my computer too long.” “I get sick when I smell certain things.” “I smell things other people can’t smell.” “I feel bug bites when there’s nothing biting me.” “I feel fluorescent lights.” ...This list could keep going to fill several books.)

4) have avoided medical care in some situations or intuitively rejected drugs, tests, foods, and other things they are “afraid they’re allergic to.” Many have a conditioned fear of eating. Eating disorder misdiagnoses are extremely common.

5) have had paradoxical or unexpected reactions to drugs or supplements.

6) have developed unusual coping mechanisms and chameleon-like tendencies and “seem normal,” because they

7) are very bright and adaptable, and frequently on the autism spectrum.

8) have a strong sense of smell or hearing. They have “sensitive” noses, ears, and often everything elses, too.

9) have been told they’re experiencing anxiety or panic attacks (which are perhaps the most common misattributions of one of the acute and often dangerous neurological flags of anaphylaxis). That awful “sense of impending doom” is on anaphylaxis charts for a reason; it’s the chemical storm of the body fighting a reaction. Many children, especially, are at some point treated for anxiety. Most of these children simply learn to hide these symptoms better, making finding the root cause (mast cell reactions) even more unlikely. This is also complicated by the fact that the benzodiazepines typically given in hospital settings and prescribed for panic attacks are potent mast cell stabilizers, so they frequently work...just not for the reason you expect.

10) (perhaps as a consequence of all of the above, and frequently due to contact with doofuses), are (justifiably) wary of medical providers of many kinds. They are, rightly, as likely to fear going to an emergency room for their symptoms as their symptoms themselves (which, as I've mentioned, in many cases involve a neurochemical storm of terror). They get used to a daily baseline of mediator warfare, pain, and other symptoms even a hint of which would send “normal” patients into a medical frenzy and a visible personal crisis...and many of them maintain an outward appearance of normalcy through all of this. Some cope so well with their baseline that they report being mostly healthy, even when going into shock, and are startled to discover their “quirks” are clinically significant.