To my delight awareness of the potential connection between the two diseases is spreading like wild fire.
When we first suspected a mast issue for Abby a couple years ago, we thought she was "unique".
We know there is an EDS and Mast connection, and we know there is a Mito plus EDS connection. It appears we now know there is a Mito plus Mast connection.
So many in the Mito community have drug sensitives, food reactions, unexplained symptoms.
Of course now my question will be, "Which came first, the chicken or the egg?"
On a positive if you can find a Mast Cell Activation Specialist there are treatments. We have found that by removing triggers from Abby and preventing reactions she has a level of stability. Her kidneys have stabilized/improved. No major setbacks.
There are many "low histamine diets" and lists on the internet of common triggers but patients need to remember that like Mito, each Mast patient is unique in what is a trigger for them.
Pain, chemicals, temperature change,viruses, stress,fatigue humidity, exercise, fragrance, pets, etc- Where one patient might have the most issue with food, the next might trigger from exercise, or fatigue or medications etc.
While I am certain Abby's "project elimination" was the right choice for Abby, she also has a life time history of food allergies and reactions. Eliminating foods should not be done unless you are certain the food is a trigger or under the care of your Dr. Mito patients tend to have more nutritional complications as far as maintaining the necessary levels so a food elimination diet should not be taken lightly.
For most patients with Mast Cell Activation Syndrome there are treatments. H1,H2, and other medications that have been found effective in calming those mast cell's down.
On facebook there are tons of Mast cell disorder support groups and I recommend you join them.
The worst part of Mast Cell Activation Syndrome is finding a Specialist that actually is aware of how to test, treat or even aware of how different it is from Mastocytosis is slim pickings. Many Specialists are only familiar with Mastocytosis and elevated Tryptase. With Mast Cell Activation Syndrome the Tryptase will almost always be normal. Believe it or not, there are fewer Specialists that are specialized enough to recognize, diagnosis and treat MCAS then there are for Mito!
food and medication intolerances
GI issues(the same gamut as mito patients)
And so much more are seen in both populations. Below is a link to a great article written by Dr. Afrin(lead specialist on Mast Cell Activation Syndrome) that covers the recommended diagnostics, symptoms.
"A concise, practical guide to diagnostic assessment for mast
cell activation disease
Lawrence B Afrin, Gerhard J Molderings"
If a Mito patient also has a mast cell activation syndrome it is possible with the appropriate treatment for their mast cells they might be like Abby and enjoy some stability with the appropriate treatments. Improving quality of life is key within both populations of patients.
We all have been told that Mitochondrial disease can cause all sorts of secondary issues, well with Mast Cell Activation Syndrome the same thing.
I am hopeful this year will bring more research that will help explain the connection.
For now though, we will keep those triggers away from Abby.