What is Celiac Disease?

When people ask me “What is Celiac disease?” I have to admit it throws me a bit. We don’t see Jamie’s celiac as being a disease. He doesn’t have the symptoms of celiac 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’

Celiac is more than a simple food intolerance or allergy. Technically, celiac 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.

Symptoms of celiac disease

These seem to be incredibly diverse, which is probably why so many celiacs go undiagnosed for years. They can include:-

Abdominal pain
Weight loss
Bloating
Tiredness
Irritability
Depression
Anaemia
Stomach upsets and pain
Mouth ulcers
Bone or joint disorders

When Jamie was diagnosed, he showed few of the symptoms of celiac 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 celiac children. I am very grateful to our GP who initiated blood tests for celiacs 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 celiac disease?’ is usually ‘How can it be treated?’

Celiac 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. 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 celiac disease? It’s a minor part of his life. It can be managed.