What Do ADHD, Long Covid And Ehler’s Danlos Have In Common? Meet The Mast Cell.

Mast cell activation syndrome causes hypersensitive responses to potential allergens, often resulting in histamine release, which causes inflammation. Mast cell activation syndrome (MCAS) occurs when the mast cells behave like this across many areas of the body at different times, causing periods of significant ill health and disability, before recovering again. Dr Afrin, Mast Cell specialist, describes the MCAS profile:

“MCAS often presents insidiously, slowly worsening over time, with general themes of chronic multisystem inflammation with or without allergic-type problems; there may also be poor healing or other abnormal growth or development in various tissues and organs. The chronic nature of the disease is often punctuated, too, by acute “flares” or “spells” of various symptoms.”

It is basically sensory sensitivity at the cellular level.

MCAS has been associated with a range of symptoms including: hives, psoriasis, asthma, fainting, low blood pressure, fast pulse, anxiety, brain fog, exhaustion, anger, red face flushing, irritable bowel syndrome, gastritis, reflux, diarrhoea, bloating, itchiness, sore throat, hoarseness, arthritis and more. Annoyingly, it comes and goes, so a flare up can be gone by the time you see a specialist and the specialist might treat the symptom, without seeing the pattern of the cause. This is particularly the case when symptoms move about, causing gastric difficulties on one occasion, hives or psoriasis on another. At its worst, it causes full blown anaphylaxis, which needs immediate and urgent treatment. Below are the symptoms of anaphylaxis, described by the charity, Mast Cell Action.

1. Rapid onset (within minutes to hours) of symptoms involving the skin or mucosal tissue (skin lining the body cavities e.g. inside the mouth and nose) for example, swollen lips or tongue

2. Breathing difficulties

3. Reduced blood pressure, collapsing, incontinence (lack of bladder control)

4. Persistent gastrointestinal symptoms such as cramps, abdominal pain or vomiting

Mast Cell disease is more prevalent in neurodivergent people, including ADHD. It also cooccurs with Ehler’s Danlos Syndrome and Type II Diabetes. It has a very high overlap with long covid, and around 50% of people treated for long covid with an MCAS protocol found their symptoms improved.

MCAS can be treated with antihistamines, a low histamine diet and relatively cheap mast cell stabilising drugs. If it is more severe there are immune system drugs available. This sounds easy but avoiding foods that trigger symptoms is the best defence and the antihistamine diet can be complex to follow and restrictive in social life. There are many versions of this diet, and the best course of action is to work out which triggers you, and how much of it you can handle before you tip into a flare up. Mould is a common trigger, which can be present in foods that have been left out, but also in our environment.

MCAS is highly prevalent in the population, estimated at 17% of adults with symptoms that mask and plod along for decades before the person finally finds the right practitioner. MCAS is described as “the thing that finally made it all make sense” to many sufferers.

MCAS becomes disabling when your body is easily triggered into a flare up by substances you cannot avoid. The criteria for disability status, in most developed nations, is a chronic condition, lasting a significant amount of time, which affects normal day to day functioning. According to these criteria, MCAS patients could qualify, depending on the extent of their difficulties.

Accommodations for people with MCAS are going to rely on supporting the individual to eat a low histamine diet, to avoid toxic buildings and managing symptom flare ups with flexibility on location and hours of working. MCAS is manageable when it is understood and adapted to our lifestyle. When it is ignored, it leads to serious ill health and distress. In a time when long term ill health is causing increased dropouts from the labour market, MCAS awareness and treatment could make a huge difference to your workforce.

To read more of Professor Nancy Doyle’s Forbes blogs here.