Once upon a time, the only thing I knew about coeliac disease was that I had to avoid gluten to feel well.
That is basically all I was told by my doctor when I got my result. I thought it was a food intolerance or an allergy, and I didn’t even know the difference between the two. I had quite a classic presentation of coeliac disease- weight loss, diarrhoea, nausea, anaemia and lethargy. I also experienced non gastrointestinal symptoms like bone fractures, hair loss, mouth ulcers, brittle nails and brain fog. I thought that all coeliacs had the same complaints.
I did not know about the fact coeliac disease is an autoimmune condition with multi system symptoms. I was surprised to find out not all coeliacs experience the same type or severity of symptoms in response to gluten. Adults with coeliac disease rarely present with classical manifestations such as diarrohea, weight loss and abdominal pain or bloating. Most present with atypical symptoms, most commonly anaemia. Furthermore, when gastrointestinal symptoms are experienced, they can be variable between individuals.
In a coeliac conference I attended, I became aware of what is known as The Coeliac Iceberg. This shows that coeliac disease patients with symptoms make up only the tip of the coeliac iceberg. Patients without symptoms lie hidden below the waterline and are much larger in numbers. Asymptomatic patients consist of those with silent or latent coeliac disease. All these groups have the genetic predisposition to coeliac disease. People with latent coeliac disease have the potential to develop coeliac disease due to their genetic susceptibility, and may have a positive antibody blood test but no intestinal damage is found during endoscopy and biopsy.
Please refer to the below diagram from http://celiacclinic.wordpress.com/2009/05/03/78
In people with silent coeliac disease, the antibody blood test is positive, and the small intestinal mucosa is damaged, but no symptoms are present. These patients are usually diagnosed by screening relatives of people with coeliac disease or those with risk factors. If you look at the coeliac iceberg you can see that there is a much larger number of people who suffer from silent coeliac disease than those who experience symptoms.
This is a big reason why coeliac disease is so underdiagnosed. Unless these people are screened, they would live their lives happily eating gluten, totally unaware of the damage that is happening inside their intestine. This leads to a wide range of symptoms and complications.
When I eat gluten I get extremely ill. I used to think this was a curse. Now I feel that it is a blessing in disguise.
I would never ‘cheat’ on my gluten free diet because I know what will happen if I do. It is an incentive to stick to the diet for me. It would not even be an option to eat gluten for many of us.
Although many diagnosed people who do not experience symptoms do follow a strict gluten free diet, these people might find it difficult to know if they have been glutened. Some might feel that they can occasionally eat a little gluten because they do not feel unwell when they do.
It is important to understand that a person with coeliac disease cannot eat gluten, whether symptoms are experienced or not. I have heard people say that they can tolerate a little gluten because they feel fine when they eat it. The truth is that they can’t. Not even a little bit. Because just like in people who experience symptoms, repeated ingestion of gluten can cause serious health complications. And I am sure nobody would want that.
photo credit: <a hre f=”http://www.flickr.com/photos/dbuedo/6728211649/”>david buedo</a> via <a href=”http://photopin.com”>photopin</a> <a href=”http://creativecommons.org/licenses/by-nc-sa/2.0/”>cc</a>