An NHS GP has shed light on a little-known but ‘massively underdiagnosed’ condition that can cause several common symptoms, including breathlessness, itching and pain
An NHS GP has drawn attention to a ‘massively underdiagnosed’ condition that can cause a range of common symptoms, including breathlessness, itching and pain. Dr Ahmed, known on social media as @Dra_says, highlighted Mast Cell Activation Syndrome (MCAS) in a TikTok post.
NHS research indicates that MCAS triggers ‘severe allergic symptoms’, which can range from intense itching and swelling to life-threatening anaphylactic reactions. If you suspect someone might be having a severe allergic reaction – for instance, if they have difficulty breathing – call 999 immediately.
Unfortunately, diagnosing MCAS can be challenging, says Dr Ahmed, who believes the condition is ‘massively underdiagnosed’. The GP further explained in the post in late 2024: “Mast cells are everywhere in the body. They’re in the skin, the gut, the respiratory system.
“Their main role is in the immune system, and they are constantly checking for any allergens. If they detect one, they release histamine, which gives you lots of nasty symptoms.
“However, in MCAS, they get triggered by things that shouldn’t really trigger them, such as food, heat, cold or even stress.”
He added: “If you’ve got MCAS, you can have almost any symptom” – although he was able to share some of the common symptoms sufferers may experience, reports Gloucestershire Live.
Common MCAS symptoms
- Skin writing
- Pain all over the body
- Feeling tired all the time
- Heartburn
- Reflux
- Breathlessness
- Palpitations
- Dry eyes
- Dizziness
- Fainting
The doctor clarified that skin writing is “where you get a raised red reaction from very minor touch to your skin; even simply stroking your skin with your finger can cause this.”
He continued: “But it’s important to know almost any symptom can present, which is why it is very hard to diagnose. Now, to diagnose this is very difficult because the tests always come back normal or borderline, but there are some specialist tests and criteria we can use to help diagnose this. But these tests aren’t fully available on the NHS yet.”
How to diagnose and treat MCAS
The doctor explained: “One of the best ways to help us diagnose it is with a history and by starting treatment to see if you have a good response. Now, there’s no specific cure or treatment, but treatment involves avoiding triggers, and H1 and H2 receptor antagonists.”
He also shared details of a case where treatment had made a remarkable difference, saying: “If you’ve got MCAS and you get started on treatment and it works, you might find what you’ve been diagnosed for gets completely better. I had a patient with fibromyalgia who got diagnosed with MCAS and was started on H1 and H2 receptor antagonists.
“Their fibromyalgia almost completely got better, and that’s because they didn’t have fibromyalgia in the first place. It was all down to the MCAS.”
When to see a doctor
As Dr Ahmed pointed out, you can experience many of the symptoms linked to MCAS without actually having the condition. However, he encouraged people to discuss any persistent symptoms with their GP.
He explained: “If you’ve got all these symptoms, it doesn’t mean that you’ve got MCAS, but if your symptoms aren’t getting better, please go and see your doctor.”
According to The UK Mastocytosis Support Group, a charity that supports mast cell disease patients, ‘because Mast Cell Diseases are rare (or rarely diagnosed), it can be difficult to find a knowledgeable doctor.’
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The support group claims: “At present, Mast Cell Activation Syndrome is a condition that suffers from insufficient recognition in the UK medical system.
“While it has been recognised in America by their Centers for Disease Control (CDC) as a condition (with its own ICD-10 code), it has not yet received such a code in the ICD codes used worldwide by the World Health Organisation.”