Doctor says 'massively underdiagnosed' condition can cause 'almost any symptom'

An NHS GP has highlighted a 'massively underdiagnosed' condition that can cause several common symptoms, including breathlessness, itching and pain. Dr Ahmed, known on social media as @Dra_says, shed light on Mast Cell Activation Syndrome (MCAS) in a recent TikTok post, reports the Mirror.

According to NHS research, MCAS causes 'severe allergic symptoms' ranging 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 difficult, says Dr Ahmed, who believes the condition is 'massively underdiagnosed'. The GP elaborated: "Mast cells are everywhere in the body. They're in the skin, the gut, the respiratory system.

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"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," though he was able to share some of the common symptoms.

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 explained 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 recounted a case where treatment had a significant impact, 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 said, you can have lots of the symptoms associated with MCAS and not have the condition. However, he urged people to speak to their GP about any ongoing symptoms. 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.' 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."