An NHS GP has brought attention to a ‘massively underdiagnosed’ condition that can lead to a variety of common symptoms, including breathlessness, itching, and pain. Dr Ahmed, who is popular on social media as @Dra_says, highlighted Mast Cell Activation Syndrome (MCAS) in a recent TikTok video.
NHS research indicates that MCAS can trigger ‘severe allergic symptoms’, which range from intense itching and swelling to potentially fatal anaphylactic reactions. In case you suspect someone is experiencing a severe allergic reaction, such as having trouble breathing, it’s crucial to dial 999 straight away.
Diagnosing MCAS can be challenging, according to Dr Ahmed, who asserts that the condition is ‘massively underdiagnosed’. The GP further explained: “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, like food, heat, cold or even stress,” he noted. “If you’ve got MCAS, you can have almost any symptom,” although he did mention some of the more typical symptoms.
One notable symptom the doctor mentioned was skin writing, which he described as “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 elaborated: “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.”
On diagnosing and treating MCAS, the doctor said: “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 shared an example where treatment was transformative, noting: “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.”
Regarding when to consult a doctor, Dr Ahmed advised that while many symptoms could be linked to MCAS, it’s not definitive. However, he stressed: “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.”
The UK Mastocytosis Support Group, a charity aiding patients with mast cell diseases, has highlighted the challenges faced due to the rarity of these conditions. They assert: “At present, Mast Cell Activation Syndrome is a condition that suffers from insufficient recognition in the UK medical system.”
The group also points out the disparity in international recognition, stating: “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.”