Stress. It is everyone’s enemy. For the average person it can cause tension headaches, fatigue and a bad mood. For those of us with mast cell disease it can trigger a full blown degranulation event which in turn can trigger anaphylaxis or even toxic shock.
Stress may even be what triggered us to have mast cell disease to begin with.
Stress is something we need to avoid or control in order to better manage our disease and maybe even prevent it from manifesting in our children. But how?
First, how do stress and epigenetics factor in?
From the article, Stress Hormone Causes Epigenetic Changes, published on the National Institute of Health’s website:
Researchers found that chronic exposure to a stress hormone causes modifications to DNA in the brains of mice, prompting changes in gene expression. The new finding provides clues into how chronic stress might affect human behavior.
What is the difference between genetics and epigenetics?
Epigenetics is the study of heritable changes in gene expression (active versus inactive genes) that do not involve changes to the underlying DNA sequence — a change in phenotype without a change in genotype — which in turn affects how cells read the genes.
Recent research has shown that nearly all forms of mast cell disease (MCD) are most likely genetic in nature. Most patients with mastocytosis have a mutation in the regulatory gene called KIT D816V. A study in Germany led by Dr. Gerhard Molderings showed that most of us with mast cell activation syndrome (MCAS) most likely have similar mutations in genes all around that particular one:
A research team at the University of Bonn (led by senior mast cell disease researcher Gerhard Molderings, M.D.) has found that most MCAS patients bear one or more of a large assortment of mutations in the dominant mast cell regulatory gene KIT (though only rarely is this the one particular KIT mutation (“KIT-D816V”) commonly found in the rare mast cell disease called mastocytosis).
Dr. Molderings also contributed to a research paper entitled, Evidence for contribution of epigenetic mechanisms in the pathogenesis of systemic mast cell activation disease.
In it, they write:
Recently, evidence was provided for common familial occurrence of systemic mast cell activation disease (MCAD), i.e., mast cell disorders characterized by aberrant release of mast cell mediators and/or accumulation of pathological mast cells in potentially any tissue. Since there is accumulating evidence that epigenetic processes may have transgenerational consequences, the aim of the present study was to investigate by two different experimental approaches whether epigenetic effects may contribute to the familial occurrence of MCAD.
At the end of the paper, they conclude:
In a cohort of MCAD patients, a correlation between age at symptom onset and year of birth (reflecting different generations) was observed suggesting the presence of the phenomenon of anticipation. In conclusion, the present findings suggest that epigenetic processes could substantially contribute to the transgenerational transmission of MCAD.
We are definitely one of these families and I believe it runs through my maternal line. I can see how epigenetics plays a role in this.
I recently did an informal poll in a MCAD group I belong to and asked how long patients had been sick with mast cell disease symptoms. Not when it got worse or when they were diagnosed (both of which happened to me in my 40’s) but when they first showed signs of having this disease.
I found it very interesting that most of us reported that we have been sick with MCAD symptoms, on some level, from birth:
That makes me think many of us may have at least one thing in common: a stressful (birth) home life and/or an anxious mother. Maybe an anxious mother who smoked, even? Others may have their disease “turned on” by trauma, stress or environmental factors later – even decades later – which could explain why not all of us were sick from birth.
My son and I are both diagnosed with MCAD and both of us showed signs from birth, although his were much more subtle than mine. The difference between us was the fact that I grew up in an extremely dysfunctional, stress-filled home. My mother was a chain smoker and smoked during her pregnancies. She grew up in extreme poverty and was malnourished as a child.
I moved away from my birth family, married and created a much healthier environment for my own family. I took extra good care of myself, exercised and took prenatal vitamins but my pregnancy with him was my most stressful out of the three children due to my caring for and grieving the death of a close family member who passed away in my last trimester.
Did all this stress play a role in us both developing mast cell disease? It’s very possible. In fact, it’s extremely likely.
In another study done on stress and its contribution to allergic diseases, the researchers found this:
The potential for adverse impact of maternal stress on immunity in a developing fetus and possible postnatal disease occurrence is concerning. Psychological maternal stress is increasingly considered a possible perinatal programming agent. Perinatal programming occurs when characteristics of the in utero environment, independent of genetic susceptibility, influence fetal development to permanently organize or imprint physiological systems. Intrauterine stress hormone levels (both maternal and fetal) are thought to rise with prenatal maternal stress. Since fetal immunity initially is involved primarily in self-nonself programming to prevent future autoimmunity, such prenatal stress hormone exposure may alter natural immunoregulatory mechanisms such that the child has increased risk for developing various inflammatory diseases including allergy and asthma. Various animal and human studies have shown linkage between maternal stress and immune dysregulation in children.
Also, from Harvard University:
The brain is particularly responsive to experiences and environments during early development. External experiences spark signals between neurons, which respond by producing proteins. These gene regulatory proteins head to the nucleus of the neural cell, where they either attract or repel enzymes that can attach them to the genes. Positive experiences, such as exposure to rich learning opportunities, and negative influences, such as malnutrition or environmental toxins, can change the chemistry that encodes genes in brain cells — a change that can be temporary or permanent. This process is called epigenetic modification.
Illustration by Betsy Hayes. Credit: Center on the Developing Child.
So it’s pretty clear that stress can trigger our mast cell disease, even as early as in the womb. The question then is.. what do we do about it?
How do we manage our stress?
That’s the hard part. Modern life is stressful. This disease is stressful. Our best chance at combating it is to remove as many stressors from our lives as possible. Declutter. Downsize. Change jobs. Get rid of toxic people in our lives. Turn off the screens. Get out into nature more. Get a pet.
There are a few more methods experts say we should employ to fight stress both for ourselves and our unborn children:
- Psychological methods:
Relaxation therapy (music, art, meditation)
- Physiological methods:
Exercise (we tend to do better with anaerobic)
- Pharmacological methods:
Tricyclic and SSRI antidepressants (we have to be cautious with these but there are some, like Doxepin, which are recommended)
Anxiolytic drugs (benzodiazepines are approved mast cell medicines)
- Nutritional methods:
Omega 3’s (fatty acids)
Anti-oxidants (vitamin C & E, flavonoids, selenium)
Dark chocolate (in moderation)
For my own stress control, I practice EMDR at home. I play my flute and listen to relaxing music (like Jack Johnson). I spend as much time outside as possible, tending the chickens, gardening and playing with the pups. I use a white noise generator, I practice mindful thinking and yoga and I watch a lot of Bob Ross.
This is what works for me. Hopefully you can find what works for you.