Self-management
People living with MCAS often need to take an active role in understanding and managing their condition and explaining it to others. The information and resources on this page have been prepared based on the latest scientific understanding, as well as practical experiences shared by people living with MCAS. These can be downloaded for free below.
If you are a child or young person looking for support tailored to you, please take a look at our dedicated pages.
We hope our self-management tools and resources will empower people living with MCAS to better understand and manage their condition - helping to achieve greater symptom stability when used alongside medical management.
For further support in managing your MCAS, please take a look at our pages on Managing Your Environment and Preparing for a Flare.
Additional Support
We’ve put together some resources to help you manage your condition.
Yuka App is an independent app that scans food and cosmetic products in order to know their impact on your health.
Nimbus Cards are personalised information cards that communicate your specific medical needs quickly and effectively.
NHS Patient Choice: Did you know you have the right to choose where you receive treatment within the NHS?
Access to Work: If you’re employed and need support to manage your condition in the workplace.
Navigating the Workplace: Discover tips on navigating the workplace with chronic illness.
Coping with Pain: Strategies for coping with pain.
"Despite being seen by multiple specialists, nobody looked at my issues as a whole rather than as separate symptoms. Through trial and error, I have figured out what works for me.”
Common triggers
Mast cells are a key part of your immune system involved in fighting infections and healing wounds. To do this, mast cells detect different triggers. Normally the triggers will be genuine threats to your health, but in MCAS, mast cells respond to triggers that are usually harmless. Triggers may include foods, fragrances and chemicals in products, stress, changes in temperatures, medicines and exercise, to name but a few.
Mast cells contain chemical mediators that are released in response to triggers. There are over 1000 mediators that can be released. The most commonly known are histamine and tryptase.
Our community have provided their useful tips on products and processes they have found helpful in avoiding triggers. You can take a look at our Community Tips page here.
Identifying triggers and symptoms
Identifying patterns of triggers and symptoms is the first step to managing them. It can be useful to keep a diary and log information, such as what the weather was like that day, what you ate, which medications you took, or what kind of activity you were doing before the symptoms began.
Unfortunately, MCAS triggers can vary and change over time so identifying them and managing symptoms can be challenging. However, people living with MCAS often find they are able to isolate and therefore avoid (where possible) many of their triggers over time, leading to an overall improvement in stability.
The self-management resources tabs, below, include diary sheets, logs, smartphone apps and other tools that you may find useful.
Managing triggers
Self-management means trying to avoid exposure to triggers to help prevent symptoms. Some triggers are easier to avoid than others, with environmental triggers being particularly difficult to manage. Planning ahead of time can help to limit your exposure where possible, and avoiding locations where triggers cannot be removed can help to reduce the frequency and severity of symptoms you may experience.
Many members of our community have told us that good quality air-purifiers have made a significant difference to their exposure to triggers in internal spaces such as their home or office.
We recommend sharing information about your MCAS such as triggers and medications with those around you to help limit any accidental exposure and make sure those around you know what to do if you have a severe reaction and are able to support you in this process and beyond.
Dietary triggers
Many people with MCAS find certain diets helpful for managing their symptoms. For example, low histamine, gluten free, lactose free, low oxalate or low amine diets. Keep in mind that not all of these diets will work for everyone as every person with MCAS is unique. It is also possible for multiple food triggers to cause symptoms, so a combination of dietary management strategies may be useful.
Elimination diets are designed to help people to avoid specific foods or food groups in order to recognise if the food is a trigger. Specialist support from a nutritionist or dietician is often needed to help people with MCAS make changes and find what works for them. The tools and resources on this page may support more productive conversations with a nutritionist or dietician if their knowledge of MCAS is limited.
Elimination diets in children should only ever be undertaken with your child's doctors and dietetic team.
The tabs below include practical information and resources to help people with MCAS manage triggers.
What is Mindfulness?
In it's simplest form, mindfulness means paying attention to the present moment, without judgement. Focusing on the here and now, in turn, allowing your mind to quieten, being able to soften the noise within your brain and around you.
If practised regularly, the benefits can be profound, including, but not limited to, improved focus and attention, reduced anxiety and depression, reduced chronic pain, boosted immune system, reduced stress, promoted better sleep and improved emotional regulation and resilience.
You can read more here.
Trigger information
Triggers
This resource details some of the more common triggers of Mast Cell Activation Syndrome.
The histamine bucket exercise
This histamine bucket is a useful visual aid in trying to understand the impact of factors contributing to histamine levels.
Swiss Interest Group Histamine Intolerance (SIGHI)
SIGHI is an organisation that provides information about histamine-related disorders.
The low histamine chef
Blogs, books and recipes written by the low histamine chef (Yasmina Ykelenstam), a health journalist who has managed her own histamine intolerance for more than 10 years.
Self-management resources
Dysautonomia
PowerPoint slides from Roselle O Brien's webinar on 'Dysautonomia'. Dysautonomia is an umbrella term used to classify multiple disorders in which the autonomic nervous system isn't working properly. Join us! Together we'll explore this vital area of health--our nervous system--and the important role that mast cells play in nervous system function. We'll examine some specific health conditions within the dysautonomia category to better understand how a nervous system-mast cell connection informed approach can augment interventions and strategies for improving health, wellness, and symptom management.
Your Safe Haven at Home
PowerPoint slides from Roselle O Brien's webinar on 'Your Safe Haven at Home'. We all need a safe haven; a space we can retreat to from the pressures and demands of our lives. The need for a safe haven for people with MCAS and mast cell activation related issues and disorders is vital. Join us! Hosted by Roselle O'Brien, we will explore the realities of "safe haven" in the mast cell world, what it means, what it entails, crucial elements---and why it's so essential. Add to the tools in your ever-growing toolbox of health supports with insights and strategies for creating your safe haven
Stress and Mast Cells
PowerPoint slides from Roselle O Brien's webinar on 'Stress and Mast Cells'. Together we'll explore how stress impacts us physically in our bodies, the role it plays with mast cells and in mast cell activation, and some strategies for managing stress, the stressors in our lives, and mast cell activation reactions that can be brought on by stress.
Pillars of Health
PowerPoint slides from Deborah Bircham from Live Well with Chronic Illness's webinar 'Pillars of Health'. Regardless of what medical diagnosis you have, there are certain things that are foundational to health for all of us, and working on these ‘pillars of health’ can only improve the situation for any health condition. Deborah will share her unique ‘Health Discovery Framework’ with us, which she uses with her own clients.
The Neuroscience of Mindfulness
PowerPoint slides from Deborah Bircham from Live well with chronic illness's webinar 'The Neuroscience of Mindfulness'. Find out more about the neuroscience of how Mindfulness works, and how everyone can develop their own unique mindfulness practice to support them to manage difficulty and feel better—EVEN if you struggle to sit still, switch off and relax!
Understanding Lyme Disease – a general introduction to Lyme
PowerPoint slides from Deborah Bircham from Live well with chronic illness's webinar 'Understanding Lyme Disease – a general introduction to Lyme'. This talk teaches you how to be Lyme Aware. For many people, there is a significant overlap between Lyme Disease and MCAS, and Lyme can be an underlying root cause for MCAS.
How to be Heard: Advocating for yourself within the NHS
PowerPoint slides from Vicky Pearson's webinar 'How to be Heard: Advocating for yourself within the NHS'. This event was designed to help individuals learn how to approach MCAS whilst accessing medical care within the NHS and how to advocate for yourself as a patient.
How to Sleep Well
PowerPoint slides from Deborah Bircham from Live well with chronic illness webinar on 'How to Sleep Well'. We all know that a good night's sleep is important for our wellbeing, but MCAS can badly affect our sleep. In this talk we will explore what sleep is, why we need it, and how we can support our body to get as much good quality sleep as possible.
Immune Health - How to Fight off Bugs and Viruses Naturally
Powerpoint slides from Deborah Bircham from Live Well with Chronic Illness' webinar 'Immune Health - How to Fight off Bugs and Viruses Naturally'. When we live with MCAS, we often find we have lowered immunity and catch colds and bugs more easily. In this talk, we will look at how the immune system works, and how we can support it to function optimally using diet and lifestyle measures. What are some natural ways to boost immune health, to keep us well and free from viral infections?
The Histamine Bucket Theory
This histamine bucket theory is a useful visual aid in trying to understand the impact of factors contributing to histamine levels.
Life Audit
Are you meeting your Core Needs? Conducting a life audit can be an insightful exercise to help you evaluate and enhance your overall wellbeing.
Triggers
This resource details some of the more common triggers of Mast Cell Activation Syndrome.
Symptoms of MCAS
This resource details some of the more common symptoms of Mast Cell Activation Syndrome.
Recipe Conversion
You can use this blank recipe conversion page to note down any MCAS friendly changes you have made to your favourite recipe's.
MCAS Self-management toolkit
This toolkit contains information about substances in food and in the environment that can affect mast cell activity or trigger MCAS symptoms. It also includes practical advice to help you understand and avoid these triggers, as needed.
MCAS symptom log
The histamine bucket exercise
This histamine bucket is a useful visual aid in trying to understand the impact of factors contributing to histamine levels.
Medication log - adult
A medication timetable to log daily medications
Medication log - children
A medication log blank which you can use to record medications, dosages and medication times in order to keep on track.
Self-management apps
Ask Ingrid app
A free app developed by the Food Intolerance Network, Australian Society for Public Health. It contains comprehensive information about foods containing histamine, sorbitol, gluten, lactose, fructose and FODMAPs.
Baliza.de. Histamine, fructose & co food intolerance app
A smartphone app that provides practical, evidence-based information about foods containing common triggers such as histamine, tyramine, lactose, fructose, sorbitol and fructose.
Monash University FODMAP app
A smartphone app developed by experts at Monash University. Contains detailed information about foods containing FODMAPs as well as a useful symptom tracker feature.
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