Coeliac disease is an autoimmune disease that is characterised by damage done to a part of the wall of the small intestine called the villi.
The trigger for the immune system to cause this damage comes from eating a protein found in certain grains, called Gluten.
What we know about Coeliac disease now is very different than what was known five or even 10 years ago.
Coeliac disease used to be thought of as a disease of childhood, accompanied by failure to thrive or significant weight loss, diarrhoea and abdominal pain.
We now know that it can affect any person, at any age, and the symptoms are extremely diverse and can affect any area of the body.
Most people with coeliac disease suffer from symptoms outside the gut. These include symptoms such as migraines and headaches, poor immunity and regular infections, neurological issues such as tingling arms and legs or ataxia (unsteady gait), skin problems and rashes and feeling tired all the time.
In fact, only 1 in 7 people with Coeliac Disease have gut-related symptoms, and many are overweight at the time of diagnosis.
As a person with Coeliac Disease , I have observed two great problems within the coeliac community.
1. It is very difficult to get a diagnosis.
For every one person with a diagnosis of Coeliac disease in the UK, there are seven who have the disease but haven’t been diagnosed yet.
In the USA it’s estimated that 90 – 95% of people with Coeliac disease are undiagnosed.
The average time from symptom onset to diagnosis is roughly 10 years, and most people have seen a minimum of 5 different doctors about their on going health problems during this time.
2. A large group of people, who have been diagnosed with Coeliac Disease, don’t get well with the Gluten-Free Diet alone.
For some, removing all traces of gluten from the diet is enough to transform their health. But for many others people with coeliac disease, just going gluten free is not enough.
Some people continue to suffer with roughly the same symptoms they had before diagnosis, and to add insult to injury, others actually develop new symptoms as well.
There is a lot of healing and repair that may need to take place throughout the body, on top of the villi growing back.
There may be other food intolerances and inflammatory reactions to foods that can occur as well as gluten.
People with Coeliac disease may suffer from Small Intestinal Bacterial Overgrowth (SIBO) or imbalances in the bacteria in the gut.