Start with your own patterns

Everyone’s experience of MCAS is different. Triggers can vary considerably from person to person. Something that causes symptoms for someone else may not affect you at all. 

It can be helpful to start by focusing on your own experiences. Think about when symptoms occur, what was happening beforehand and whether you have noticed similar patterns before.

Over time, this can help you identify the factors that seem most relevant to you, rather than trying to avoid every possible trigger.

Keep a symptom and trigger diary

Keeping a simple diary can make it easier to spot patterns that aren't obvious from day to day. Record your symptoms and when they occur, alongside anything that might be relevant - such as food and drink, medications, fragrances or chemicals, temperature, exercise, stress, sleep, illness or hormonal changes. It can also help to note how long symptoms lasted and anything that helped.

You don't need to track everything indefinitely. The aim is to gather useful information that helps you understand your individual patterns.

You can download our symptom and trigger diary here. 

Look for patterns, not single events

When symptoms appear suddenly, it's natural to look at what happened immediately beforehand. However, for many with MCAS, the last thing you ate, touched or did isn't always the cause.

It can be helpful to try to look for patterns that repeat over time. You may also find that several factors appear to contribute together rather than there being one clear trigger, this is sometimes called The Bucket Theory. Taking a wider view can help you avoid unnecessarily removing foods, activities or other things from your life based on a single experience.

Remember that tolerance can change

MCAS triggers aren't always predictable. Sometimes people find that something they usually tolerate may occasionally contribute to symptoms, while at other times it may cause no noticeable reaction.

People tell us that their tolerance may be influenced by what else is happening at the time. Illness, stress, hormonal changes, poor sleep, physical exertion or exposure to several potential triggers close together could all play a part.

Considering the wider circumstances around a flare can therefore be just as useful as looking for one individual trigger.

Avoid restricting unnecessarily

Identifying triggers is about understanding what affects you, rather than avoiding everything that has ever been reported as an MCAS trigger.

Try to focus on repeated patterns and changes that genuinely seem to make a difference. Becoming unnecessarily increasingly restrictive with food, activities, products or environments can affect nutrition, wellbeing and everyday life.

If you think food is contributing to your symptoms, or you're considering significant changes to your diet or medication, seek advice from an appropriately qualified healthcare professional. 

You may not identify every trigger

Even with careful tracking, there may be times when you can't work out why your symptoms have changed or what contributed to a particular flare.

The aim isn't to identify every possible trigger or create a perfect list of things to avoid. Instead, focus on the patterns that are useful and meaningful to you and on the things you can realistically manage.

As you learn more about your symptoms, your understanding of your triggers may continue to change too.