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.

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.

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.

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.