Many MCAS patients have difficulties with scents and odors. The Mastocytosis Society lists these items along with many other triggers on their website.
My daughter, Michaela, has been experiencing mast cell degranulation upon exposure to certain chemicals, and not just the scent or odor. Most recently it has been to chlorine in a swimming pool. It’s also been to an exposure of carbon monoxide, and to the off gassing from new floors and paint in a house.
The result of all of these exposures has been the sensation of a reaction followed by gut pain. She has taken Benadryl to mitigate the symptoms, and has never had to use an epinephrine autoinjector since the reaction hasn’t been that severe. Within a day of the exposure, she gets a terrible cold virus. Each time she has used her detective skills to determine what caused her symptoms, and came back to these chemicals.
Her recent reaction to chlorine is disappointing because she loves to swim. She swam every day during the summer when she was a child, and never had any issues. However, in the last year, both times when she went swimming, she has ended up with swollen nasal passages and a sore throat within hours after swimming, along with a painful stomach. She takes Benadryl, which helps the inflammation and then the next day she comes down with a cold virus. She is hoping to find a pool in the Denver area, where she currently lives, that uses minimal or no chlorine, but has yet to find one!
The carbon monoxide exposure was the weirdest because there is no smell. After touring a newly constructed hotel in Denver, she was feeling nauseated and having trouble breathing without coughing. She couldn’t figure out what was going on, and the symptoms quickly ceased. Two days later, she awoke and felt the familiar symptoms of a mast cell reaction along with the breathing difficulty and dizziness. She immediately went to the emergency room where the doctors said she exhibited all the signs of carbon monoxide poisoning and that the hotel that she toured was in the news after having a carbon monoxide leak. They put her on oxygen for several hours and then released her. Because her lungs had been compromised two years previously during aspiration pneumonia, she has to be very careful about exposures to breathing in chemicals.
Michaela also experienced a strange reaction two summers ago. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our Network Spinal Analysis chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone and new paint applied to the interior walls! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.
Mast Cell Activation can be a serious issue, and one that she has learned to manage on a daily basis by asking questions and being very aware of her environment to mitigate exposure as much as possible.