Mast Cell Activation Syndrome (MCAS) is still in its infancy in the world of health care, but recognition of the condition has come a long way in the last 20 years . When I began having symptoms, no doctor had a name for what I was experiencing. One GI doctor called my diagnosis an “Unnamed Cellular Disorder”. Different sources state the name Mast Cell Activation Syndrome was created in 2007, while the diagnostic criteria wasn’t proposed until 2010. I began having symptoms, while unrecognized at the time, in the early 2000’s. And as the years went by, some of the symptoms I was experiencing weren’t just from the MCAS, but from other issues that sourced from inflammation or cellular miscommunication.
Because of the length of time that I’ve had MCAS, I have also had the experience of new diagnoses being given to me. I believe all of these new diagnoses source from the inflammation that MCAS creates in my organs and my skin, along with a nervous system that views everything as a “tiger” instead of an innocuous item. These tigers can be food, scents, pollen, stress, and they can also be innocuous things, but my body has a difficult time differentiating the two. The result is that my body remains in a cycle of inflammation and other conditions end up being diagnosed.
The first additional diagnosis I received was for Eosinophilic Esophagitis (EoE). This one makes sense to me. All of the inflammation in my esophagus created the need for more powerful cells to show up and mitigate the issue. Sadly, eosinophils hung around for a long time in my esophagus doing more damage than good. I had one endoscopy in 2011 where I had 80-90 eosinophils per high powered field in my esophagus! No wonder I was so miserable! The good news is that since then, I have gotten much better at controlling the mast cells, through the correct antihistamines and mast cell stabilizers, and my last endoscopy in 2024 showed no signs of EoE! That is a big accomplishment!
Another diagnoses that I have received since the MCAS diagnosis is Blepharitis, which is an inflammation of the eyelids. It sounds fairly innocuous, however I can attest that it’s only a daily regimen that I have to keep this issue from affecting my ability to see. I do lid scrubs twice a day and hot compresses on my eyelids once a day to keep my eyes and eyelids in good shape. Summertime with pollen in the air makes this condition get worse, so I have to be careful being outside too much when pollen counts are especially high.
I had Rosacea diagnosed several years before I had MCAS diagnosed, and I’m convinced my facial skin was so red from all the heat in my stomach and intestines. This skin condition can be very painful, and it was for me until I began to research and find the right skin creams, moisturizers and soaps to use on my facial skin. Again, this takes a daily routine that isn’t varied, and a commitment to do it daily. I can say that almost every MCAS patient I have met has told me they have also been diagnosed with Rosacea.
As the years went by with MCAS, I got diagnosed with IgA Nephropathy, a kidney autoimmune condition where blood and protein is found in the urine. This can be a benign illness, or one that leads to kidney failure. I got this diagnosis about 6 years ago, and now have to see a Nephrologist every year to have blood and urine tests to see how my kidneys are functioning. Interestingly, for me, it’s not a trajectory downward, but rather a situation of one year it looks like I’m getting better and the next year it looks worse. My doctor is wonderful and is not a catastrophizer, which is very helpful to calm me down when the test results don’t look so good. Since I’m unable to take medications orally without impacting my sensitive stomach, and my diet is still very narrow and filled with too much chicken (too much protein in the diet can make test results worse), I’m really unable to do anything about this diagnosis. And that helpless feeling isn’t very comfortable for me. I do a daily Zhineng Qigong practice that has been shown in their research to assist the kidneys in healing, and other than that I continue to try to find a new food that I can tolerate so I can lower my animal protein intake.
A skin condition called DSAP (Disseminated Superficial Actinic Porokeratosis) is my latest diagnosis. This creates circles on the areas of my skin that have had too much sun exposure, which for me is my arms and legs. I’ve been given a prescription of Lovastatin Cream that is helpful, but does nothing for the lesions already on my skin. The cream is to prevent more lesions from appearing, but for me it probably prohibits about 50% and my skin still looks a little frightening. People with autoimmune issues are more likely to receive a diagnosis of DSAP. One diagnosis leads to another and to another.
All of these issues with my skin and my kidneys comes down to too much inflammation in my body. Mast cells are such a wonderful cell, but too much of a good thing isn’t good! I’ve found that worrying makes everything worse, so I continue to do my Zhineng Qigong practice daily, try to keep my life to a minimum of stress, and enjoy each day! I will continue to share what I’ve found that works for me to mitigate the symptoms of MCAS on this blog, and if YOU have found anything that works for you, please contact me at [email protected].