Mast Cell 360 – Grow Mindfulness

Proactive Acceptance and Personal Research of Chronic Illness

I was very recently diagnosed with osteoporosis – an addition to my multiple chronic illnesses. This diagnosis comes on top of existing chronic medical conditions including multilevel degenerative disc disease, exercise asthma, skin cancers, arthritis in my middle finger and MCAS (Mast Cell Activation Syndrome) with Histamine Intolerance (leading to multiple allergies/food sensitivities). The existence of multiple chronic diseases prompted my medical practitioner to develop a Medicare-supplemented Chronic Disease Management Plan.

What I have learned from trying to manage my other chronic health conditions is that the way forward begins with acceptance of what is. This is not a passive position but a proactive one entailing:

acknowledging the limitations imposed by your chronic illness
exploring the boundaries of the limitations (not accepting imagined restrictions or ones suggested by a medical professional based on a limited perspective on your illness)
seeking expert and social support, e.g. the International Osteoporosis Foundation
redefining personal identity where that seems advisable
expressing gratitude for what you do have and can do
undertaking recommended testing
educating yourself about your medical condition – it’s precursors, progression and prognosis
researching healing modalities.

Why do personal research?

The reality is that medical practitioners, no matter how dedicated they are to your healing, are limited by time, training and discipline approach. Very few are able to adopt a holistic perspective. Given that chronic illness is typically complex, having a multisystem impact compounded by interdependency and interaction, a holistic perspective is often necessary to establish effective healing modalities.

Often medical practitioners, who are frequently time-poor because of the patient demand of their practice, adopt a symptomatic approach that just touches the surface of an illness and does not address the root causes.

I have experienced these limitations of medical practitioners and found that I had to supplement their perspective and approach with my own research and be an advocate for my own health improvement. This personal research does not supplant the advice of a medical practitioner but supplements it, enabling you to ask, “What if…?”

My personal research in relation to osteoporosis

Following the personal research principle, I began to question why I was experiencing osteoporosis when I had been exceeding the recommended intake of calcium for many years, mainly through Ostelin (Calcium and Vitamin D) and almond milk. The question then arose as to how well my body was absorbing the calcium.

In following this line of questioning, I learnt the following:

MCAS negatively impacts bone strength. Dr. Lawrence B. Afrin (2013), international expert in MCAS, reports on research that shows that “premature osteopenia/osteoporosis is frequently found in mast cell disease patients”. More recent research by David Harris (2024) shows that MCAS has a “direct role in bone metabolism” through the chemicals, such as histamine, released in the inflammatory response of MCAS. He states that “this overactivation can lead to an imbalance in bone remodeling, favoring bone loss and increasing the risk of osteoporosis”. So the focus on repair should include reducing histamine release through food control and anti-histamine medication/supplements.
My medical practitioner has given me a referral to an exercise physiologist to develop a weights exercise program which research shows helps to develop bone density and strength. However, while this is important to undertake, it still addresses the symptom (loss of bone density), not the cause (potentially MCAS acting negatively on bone density). To their credit, my medical practitioner had organised a bone density scan to identify the root cause of my degenerative disc disease and loss of height. The scan established the existence of osteoporosis.
Exercise is an important part of the healing process for osteoporosis. So my transition from playing tennis to playing pickleball, necessitated by arthritis of the middle finger on my right hand, is an important means to maintain an exercise regime and one that is less exacting but still providing weight-bearing activity essential for developing bone density and strength. There is also research that shows that people with osteoporosis should “avoid exercises with extreme spine curving forward, such as toe touches and sit-ups”.
I have previously written about the multiple benefits of Tai Chi and how it can improve your tennis game, as well as that of other racquet sports such as pickleball. Tai Chi has been shown to improve bone health, being a gentle, weight bearing exercise. This works in two major ways, (1) improving bone density and (2) improving balance and coordination (to prevent falls and related broken bones). There are resources readily available to help people manage osteoporosis through Tai Chi such as Tai Chi for Osteoporosis (DVD by Dr. Paul Lam) and Tai Chi for Older People.

Further revelations from my personal research and experience

As I continued to research my chronic medical conditions, I discovered the following things that can impact my health:

Exercise anaphylaxis

Skin prick testing revealed that I have wheat allergy (among many other food sensitivities). However, no medical practitioner mentioned to me that this could lead to what is known as “exercise anaphylaxis”. Apparently, according to the Mayo Clinic, if you have a wheat allergy and you exercise “within a few hours after eating wheat” you can experience exercise-induced anaphylaxis.

A holistic approach to MCAS incorporating nervous system regulation

Most practitioners who accept the existence of MCAS adopt a biomedical model which focuses solely on the body and the use of medications and supplements as the only healing modality. Beth O’Hara, creator of Mast Cell 360, determined through her research and extensive work with patients that this approach adopted by most medical practitioners failed to address the nervous system, a key component of MCAS disease. Beth stated that righting the nervous system represented 50% of the necessary healing modality. She was able to demonstrate through actual results that a healing modality for MCAS must include rewiring of three interrelated systems:

Parasympathetic re-balancing
Vagal nerve signalling
Limbic system re-regulation

To this end, Beth designed a masterclass titled Mast Cell Nervous System Reboot. I have purchased this course and have been working my way through the science explaining the nature of MCAS and the underpinnings of Beth’s healing protocol. I am looking forward to undertaking the practices she incorporates in the course to calm the nervous system. Her Mast Cell 360 website has multiple resources, including health coaches, for people experiencing MCAS and histamine intolerance.

Allergic arthritis

One of the things I discovered independently was the existence of allergic arthritis. I had been wondering why the joint in my right middle finger was swollen whenever I experienced other allergic reactions. Research has shown that allergies /food sensitivities, creating an inflammatory response, can aggravate existing arthritis and cause osteoarthritis in other parts of the body.

Low histamine foods – apples

Apples have been identified as a low histamine food. I have found that I can readily tolerate Pink Lady apples without an allergic response. However, I have also found that Red Delicious apples cause a serious reflux reaction, leading to a sensation of choking.

High histamine foods – avocados

Avocados are identified as a high histamine food and can impact people who have a histamine intolerance. However, research shows that avocados that are firm and not too ripe are lower in histamine than those that are soft and over-ripe. This revelation was important for me as avocados have multiple health benefits and are a key part of my diet and are necessary to help me maintain my weight (which is a challenge given my restricted diet because of allergies/food sensitivities).

Reflection

The winter of my osteoporosis is yet to come as it is early days. However proactive acceptance and personal research can enable me to maintain a summer perspective in relation to my chronic illnesses. My research has highlighted things that I need to avoid, opened up new lines of inquiry, highlighted potential healing approaches and strengthened my ability to be an advocate for my own health with medical practitioners.

The more we grow in mindfulness through Tai Chi and other mindfulness practices such as mindful eating and mindful walking, the better we will be able to develop proactive acceptance, engage in personal research and find creative solutions to our chronic illness.

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This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner. Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family. This article reflects my personal patient experience – MCAS and related diseases affect each individual differently. I frequently share my research findings with my medical practitioner and this informs my treatment.

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Image by Yana Vakulina from Pixabay

By Ron Passfield- Copyright (Creative Commons license, Attribution-Non-Commercial -No Derivatives.

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Exercising Agency When Living with a Chronic Illness

There is a story in chronic illness – it’s evolution, it’s manifestation, our proactive attempts to manage it and its resolution (whatever form that takes). Managing chronic illness invariably involves the three “As” – acceptance, accommodation and agency.

Agency refers to our capacity to have some control over our internal and/or external environment. Typically, chronic illness reduces our agency in various areas of our life because it creates some form of disability which can be far reaching or limited in its manifestation in our day-to-day lives. The challenge for people with chronic illness is to limit the loss of agency where possible and increase its presence in other areas of our life.

How to develop agency as a writer with a chronic illness

In a previous post, I discussed ways to develop agency when we are trying to write while having a chronic illness. In that post, I discussed specific strategies relating to writing such as setting your own pace, finding a comfortable location for writing, writing a reflective poem and starting small.

I have developed agency in my own writing despite having MCAS, a chronic disease affecting the immune system. One form of accommodation I have adopted is to reduce my expectations about the frequency with which I produce a blog post. I have also written a series of reflective poems to help me manage the symptoms and feelings associated with MCAS. I have also started a new writing enterprise in the form of a co-authored book on management (now in its first draft stage). I have had to exercise self-compassion with this project because of the setbacks I have experienced during my writing efforts – setbacks such as the bankruptcy of our contracted publisher, the loss of data, the serious illness of my coauthor, and a week-long cyclone and associated anxiety and disruptions.

Developing agency through research and education

In an earlier post when I discussed a holistic approach to MCAS and histamine intolerance, I mentioned the work of Beth O’Hara, FN, a sufferer from multiple chronic illnesses. Beth used her illness to motivate herself to research her own health solutions and to create the Mast Cell 360 facility which offers paid, holistic health interventions as well as free resources. Her research and her own clinical practice highlighted the role of the nervous system in the development and expansion of MCAS.

Beth’s proactive approach to understanding the role of the nervous system in MCAS was to provide a specialised, online course to help MCAS sufferers gain control of their nervous system which is variously dysregulated with MCAS. Her self-help program, Master Class to Reboot the Mast Cell Nervous System, gives sufferers some degree of agency over their own health improvement.

Through this Reboot Course I came to better understand the components of the nervous system and how the nervous system interacts with other systems of the body (e.g. the digestive system). The Roadmap incorporated in the course gave me insight into the vagal nervous system, factors impacting it and manifestations of damage to the vagal nerves. More importantly, the Roadmap provides strategies to address vagal nerve excitation based on the level involved. In other words, through this Reboot Course I have a way of exercising agency over my own nervous system and its level of excitation. This provides a proactive way of managing the nervous system element of MCAS which according to Beth represents 50% of the recovery protocol.

Typically, a chronic illness will have a pattern – good days, bad days; good periods, bad periods (of variable duration). Once we understand the pattern of our chronic illness (how it manifests itself from day to day), we can exercise agency by utilising the “good” times to undertake what we consider to be important and productive. This can involve writing prose or poetry, engaging in social work or undertaking part-time employment as Jennifer Crystal did with her part-time teaching while she experienced the difficult aspects of Lyme Disease.

Exercising agency in our recreational activity

Agency can also extend to our recreational activity – we can shape our activities to fit our physical, emotional and/or mental ups and downs. I play social tennis despite having MCAS which often means that my ankles and legs are swollen and I have arthritis in one of the fingers I use to hold a tennis racquet.

I have found that swelling in my ankles reduces my mobility. I find that the lack of mobility is very frustrating as this used to be a strength of my tennis game (I was a champion sprinter during secondary school). Now with the swelling I feel anchored on the spot, not able to accelerate forward.

As the inflammation is caused by sensitivity to some foods and drinks, it is within my control to limit these to reduce the swelling and improve my mobility. This, however, is easier said than done as it severely restricts what I can eat and drink.

Another related area of agency with regard to the quality and enjoyment of my tennis game is undertaking exercise on a daily basis – including walking, a daily exercise routine (designed by my exercise physiologist) and my Tai Chi routine.

I re-learnt recently that most of the power of a tennis shot comes from your legs, not your arms or hands. I was getting very frustrated with the arthritic pain in my fingers which caused me to lose power in my arms and hands. However, I have found that by bending my knees with each shot (as I used to do), I can restrict the pain in my fingers and hands and increase the accuracy and power of my tennis shot.

An added benefit of this form of agency is that by bending my knees I unconsciously activate my body memory so that I can access a wider range of tennis shots than I would normally play without the knee-bending. You only have to watch Grand Slam tennis to see how much players, both male and female, rely on bending their knees to gain power and to play a wide range of tennis shots (some even kneel at times to absorb the power of an opponent’s shot). So the simple act of knee-bending gives me a form of agency that increases both the quality and enjoyment of my social tennis.

Reflection

The challenge with chronic illness is to identify areas for increased agency and to experiment with particular strategies to activate whatever agency we can find in whatever window of opportunity reveals itself. Mindfulness practices such as meditation, conscious breathing, reflection and Tai Chi can help us to be open to opportunities for agency and to act on them. As we grow in mindfulness, we can gain insight, heighten creativity and develop the courage to act on our increased self-awareness.

The story of Lucy, a 13 year old blind girl who is also neurodiverse, is an outstanding example of what is possible when we focus on our strengths rather than our deficits. Lucy is a prodigal pianist who has wowed audiences in places such as Leeds Train Station with her rendition of the extremely complex Chopin piece “Nocturne in B-flat Minor Op.9 No.1”. She competed in a public piano competition with three other gifted pianists who were selected by Lang Lang, world famous pianist who was “speechless” with her performance and chose Lucy as the best of the four pianists.

Lucy achieved agency in the form of her creativity and musicality, playing complex classical pieces for audiences, by utilising her strengths despite her obvious disabilities. She has highly developed hearing and an incredible sense of touch – she learned to play the piano by placing her fingers under the fingers of her piano teacher as he depressed each key. Her sensitivity in playing the classical pieces astounded Lang Lang. She played at the Coronation Concert at Windsor Castle on 7 May 2023. Lucy has since produced a classical piano CD, simply called Lucy – The Album. Lucy’s story and her training through the Amber Trust and her teacher, Daniel, is available on video.

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Image by yoshitaka2 from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Adopting a Holistic Approach to MCAS and Histamine Intolerance

One of the many things that people with chronic illness have to deal with is frustration with medical practitioners. This can involve misdiagnosis and/or inappropriate treatment that sometimes aggravates the symptoms of the chronic illness. Recently I experienced a number of frustrating dealings with medical practitioners – my GP said that allergies and Mast Cell Activation Syndrome (MCAS) were outside his area of expertise, my gastroenterologist said that MCAS was a “controversial area” (and did not take it into account in a colonoscopy examination) and my Allergy specialist adopted a simplistic, medical model of MCAS and prescribed two very strong drugs with known damaging side effects (without any warnings about their potency or dangers).

Diane Kane describes her incredibly challenging journey to health and her totally frustrating experience with multiple medical practitioners globally who failed to accurately diagnose her chronic illness. Being a professional medical researcher herself, she is now writing a book and providing a library of resources to help other people who are seeking support in their battle with MCAS and/or histamine intolerance.

Jennifer Crystal explains in her book that it took 8 years for her debilitating Lyme Disease to be diagnosed accurately and treated appropriately. Part of the issue blocking accurate diagnosis was the belief system held by Australian doctors concerning the impact of a tick bite that she received while visiting America (ticks in Australia have a significantly different health impact than those in America).

Annie Brewster MD, assistant professor at Havard Medical School, describes her frustration with medical practitioners when she was diagnosed with multiple sclerosis and, in particular, their inability to listen to her story because of time pressures and debilitating medical workload. She wrote her book, The Healing Power of Storytelling, to offer patients with chronic illness “a way through anxiety, confusion and trauma” – a way based on the research-based tenets of narrative therapy.

Annie has applied the principles of narrative therapy in the creation of her website, Health Story Collaborative, which provides a dedicated space for “storytelling for health”. One of her programs is the monthly, online Creative Meetups, a facilitated group that enables participants “to reflect and connect with others in a supportive environment”. Writing activities around stimulus material provide the mechanism for individual participants to identify and share their feelings and, in the process, “to reframe their story and reclaim their life”.

The increasing medical complexity of chronic illness

One of the factors working against the understanding and empathy of dedicated members of the medical profession is the increasing complexity of chronic illness. Dr. Lawrence B. Afrin in his book, Never Bet Against Occam, writes about MCAS and the “modern epidemics of chronic illness and medical complexity”. Lawrence was both a Research Fellow and a hematology/oncology specialist at the time. He was acutely aware of the many people who suffered not only from chronic illness but also not being able to understand, or gain insight into, their complex medical problems. Lawrence highlighted the fact that MCAS patients had a “large assortment” of symptoms and this symptom array varied “from one patient to the next”.

Lawrence researched MCAS extensively to be able to treat his own patients and also to educate other medical professionals about the complexity of the condition. He thought this increased understanding on the part of medical professionals would lead to “diagnosis and improvement sooner rather than later” for patients. Lawrence was at pains to stress that MCAS was amongst the increasing number of medical conditions that involved “chronic multisystem inflammatory illnesses of unclear cause”.

Beth O’Hara who specialised in emotional wellness, naturopathy and genetics explained in a video presentation that MCAS can result in systemic symptoms (such as sensitivity to foods, drugs, chemicals or the environment and related swelling and inflammation), musculoskeletal symptoms (such as degenerative disk issues or arthritis), skin symptoms (including itching, hives, easy bruising), cardiovascular symptoms (e.g. heart palpitations, dizziness or low blood pressure), and/or digestive symptoms (such as cramping, diarrhea, reflux, IBS).

Beth’s lifetime research of MCAS and successful healing processes was driven not only by the complexity of patients’ symptoms in her medical practice but also by her own debilitating experience of MCAS from 7 years of age. She was bedridden by the age of 20, suffered severe anxiety, joint pain and a hypersensitivity to smells and chemicals. The medications she received from medical practitioners frequently made her symptoms worse. She sought assistance from multiple health professionals but found none understood the complexity and multi-system nature of MCAS.

A holistic approach to MCAS and histamine intolerance

Driven by her own health needs and those of her patients, Beth gradually developed a holistic approach to MCAS and incorporated the healing protocol in her medical practice and related website, Mast Cell 360. Through this site, Beth offers a wide range of resources and access to practitioners especially trained in her MCAS healing protocol. For example, she offers a verified list of low histamine foods and related recipes. Her blog provides insights into the nature of MCAS, the Mast Cell 360 healing protocol, and a Mast Cell Activation Syndrome Symptoms Survey.

In her video presentation, Beth discussed her holistic approach to MCAS and identifies three core components: (1) addressing the root causes of your MCAS condition, (2) eating the right foods and taking the right supplements (her incorporated case studies illustrate that identifying the right supplements involves a trial and error approach, while identifying the right foods can involve an elimination diet and a desensitising process), and (3) “supporting the wiring of the body”).

Addressing Root Causes of MCAS

One of the things that are often overlooked by medical practitioners are the possible causes of MCAS for an individual. Beth makes this consideration one of her three key aspects of healing. She argues that you have to address the influence of these individual factors if you are to achieve healing from MCAS. Beth provides a Guide, 7 Common Root Causes in Mass Cell Activation Syndrome, to help MCAS sufferers “discover their own unique triggers” so they can work with these.

Beth maintains that the majority of health care practitioners are “unaware of these underlying factors” differentially affecting individuals and, in consequence, they tend to resort to “one size fits all” solutions such as a low histamine diet and/or antihistamine medication. Her Root Causes Guide offers insight into MCAS triggering factors and also ways to address them. Beth maintains that “the majority of my clients with MCAS have at least 4 of these root causes”.

Consuming the Right Foods and Supplements

Eating the right foods is foundational to healing from MCAS. In many cases, the initial action with MCAS is to avoid foods that result in a flare-up. Specific food allergies can be determined via an elimination diet or, more objectively, by undertaking a “skin prick test” and/or blood tests.

Beth strongly supports the use of supplements which form one of the cornerstones of her Mast Cell 360 healing protocol. She provides examples of the trial and error use of supplements in the two case studies she discusses in her video presentation. Beth urges patients to seek the guidance of a qualified health professional when considering supplements to address nutritional deficiencies because of the potential sensitivities that could be involved.

Beth provides additional online guidance in her Master Class, The Top 8 Mast Cell Supporting Supplements. In this course she covers aspects such as:

the benefits of each supplement and how to determine what is right for you
how to correctly introduce supplements and how to troubleshoot sensitivity problems
what supplements to avoid.

Supporting the wiring of the body

The reference to supporting the body’s wiring relates to processes designed to activate the parasympathetic nervous system because of the negative impact of MCAS on the vagus nerves, reflected in the body’s over-active histamine release. With MCAS, the body will often treat healthy foods as invaders because of the hyper-activity of the immune system – an impact of damage to the vagus nerves. The parasympathetic nervous system induces relaxation and improved digestion and is often described as the “rest and digest” system.

In her video presentation Beth was quite adamant that MCAS cannot be treated effectively without some work being done to activate the parasympathetic nervous system. She stated that “discovering how the body is wired is 50% of the healing process”. Beth provides an online Master Class to Reboot the Mast Cell Nervous System, incorporating parasympathetic re-balancing, vagal nerve signalling and re-regulation of the limbic system. Tools offered as part of the package to achieve these goals include specialised yoga practices and breathing exercises.

Reflection

I have personally experienced the confusion and frustration that comes with chronic illness and interactions with medical practitioners. According to the level1/level2 typology advocated by my Allergist, I do not have MCAS. However, taking Beth’s holistic view of MCAS (and recognising that Mast Cells are everywhere in my body), I actually meet her criteria for MCAS. I have “systemic symptoms” (environmental and food sensitivity, swelling and sweating), skin symptoms (rash, hives, itchiness and easy bruising) and musculoskeletal symptoms (multilevel disc degeneration and arthritis in my fingers).

The core issue with inadequate diagnosis of chronic illness is that proposed treatments will also be inadequate and potentially damaging. With Beth’s holistic approach, I can identify a number of areas I need to work on that are not confined to medication

I have recognised, for example, that I need to work with the following root causes of MCAS which are relevant to my condition:

food triggers (beyond histamine)
infections and toxicity
nutritional deficiencies
early childhood trauma (adverse childhood experiences)

I have purchased Beth’s Master Class to Reboot the Mast Cell Nervous System to help me achieve a quietening of my nervous system and reduce my level of immune reactivity. As I grow in mindfulness through breathing exercises, Tai Chi and meditation, I can activate my parasympathetic nervous system, stay focused on the present moment (not triggered by depression about the past or anxiety about the future), be more creative and proactive in exploring my healing options, and develop increased resilience in the face of constant setbacks.

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Image by Gerd Altmann from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.