A couple of people have asked me why I was upset that EDS UK allowed the Low Histamine Chef to write an article in their charity magazine – after all, the Chef has MCAD and so do an estimated 1 in 10 EDS sufferers, so what’s my issue?
Not all diseases are created equal. Let’s look at Diabetes for example. There are two types: type 1 diabetes and type 2 diabetes. In type 1, the pancreas doesn’t produce any insulin. Type 1 diabetes usually appears in childhood and often runs in families which indicates there is probably a genetic component. There is no cure and sufferers will need insulin for the rest of their lives.
In type 2 diabetes the pancreas doesn’t produce enough insulin, or the cells in the body don’t respond properly to the insulin produced. It usually doesn’t appear until adulthood and is mainly due to lifestyle choices, eg an unhealthy diet, obesity and lack of exercise. While there is no cure, changing your lifestyle can stabilize symptoms and initially sufferers may need no extra treatment other than this.
Which leads me on to MCAD. An estimated 1 in 2000 of the general population develop MCAD in adulthood, whereas 1 in 10 of the EDS population have MCAD with symptoms often appearing in childhood. Obviously there is something about having EDS that interferes with mast cells in a way which isn’t seen in other forms of mast cell disease. Just like diabetes, there is a suspected genetic link to the type of MCAD seen in EDS patients which is usually absent from MCAD in the general population. With different reasons for the mast cells misbehaving, EDS-related MCAD and general MCAD are going to need different treatments.
I’m delighted that the Low Histamine Chef has stabilized her MCAD through diet and meditation, but just like altering lifestyle won’t work in type 1 diabetes I’m unsure this approach will work for EDS-related MCAD, where the mast cells are faulty due to a genetic disease. Yes, you can help symptoms by eating a low histamine diet, staying away from your triggers and taking medication (just like a type 1 diabetic can help their symptoms by not eating a diet which demands high levels of insulin), but it’s not going to cure you because diet and lifestyle aren’t the cause of MCAD in EDS. However, altering diet and lifestyle in the general MCAD population might be all that’s needed to control symptoms to the point where they’re barely noticeable, just like altering diet and lifestyle might be all that’s needed to control symptoms in type 2 diabetes.
At least that’s my understanding, however I could be wrong – I often am 😉