When people ask me “What is Coeliac disease?” I have to admit it throws me a bit. We don’t see Jamie’s coeliac as being a disease.
He doesn’t have the symptoms of coeliac disease any more and he’s not ill for 99% of the time. It is a condition, and one which we have learnt to live with quite easily. I have never felt it helpful for him to think he has a ‘disease’
Coeliac disease is more than a simple food intolerance or allergy. Technically, coeliac disease is an ‘autoimmune disease’ where the body attacks its own tissues. In non-technical language, it means that the body has an immune reaction when gluten (which is a protein found in wheat, barley, rye and sometimes oats) is eaten.
The small intestines (just beyond the stomach) are lined with little bumps or hairs called villi. Food is absorbed through these. When this immune reaction kicks in, the villi are inflamed and damaged and as time goes on, flattened. This means that food cannot be absorbed as effectively and eventually will lead to malnourishment and various other problems. It can also cause a great deal of discomfort, diahorrea and so on. In the long term, if left untreated coeliac disease can lead to some very serious medical issues.
Symptoms of coeliac disease
These seem to be incredibly diverse, which is probably why so many coeliacs go undiagnosed for years. They can include:-
- Abdominal pain
- Weight loss
- Stomach upsets and pain
- Mouth ulcers
- Bone or joint disorders
When Jamie was diagnosed, he showed few of the symptoms of coeliac disease. He had a regular tummy ache and he looked very thin. He has always been tall for his age though, so growth wasn’t an issue as it is with so many coeliac children. I am very grateful to our GP who initiated blood tests for coeliac disease on our first visit. I know that many people remain undiagnosed for months or even years.
The Good News
The next question after ‘What is coeliac disease?’ is usually ‘How can it be treated?’
Coeliac disease is a lifelong condition, and as yet there is no cure. (Jamie has plans to find the cure when he grows up and becomes a scientist, so hang on! As his mum I have every confidence in him) However, the reaction is caused by gluten, so as long as gluten is kept out of the body there is no problem! A gluten free diet has to be followed at all times. That means no wheat, barley, rye (and sometimes oats).
At first, this seems really daunting. Gluten is hidden in all sorts of unexpected places (we had a nasty episode with a bottle of tomato ketchup once). But, three months down the line from Jamie’s diagnosis, I can say with assurance that it is possible. It’s been a journey – and one which we wouldn’t have chosen because it takes us right past the door of some of the food places where we used to hang out – but we are getting there. And Jamie is a happy, healthy nine-year old on a gluten free diet, training for his next triathlon.
What is coeliac disease? It’s a minor part of his life. It can be managed.