Celiac disease language – please change it

Celiac (coeliac) disease

Celiac family

Off gluten a person with celiac disease is “No longer diseased!”

Celiac disease language – please change it

I have been thinking about what I say to my patients. As you know, I see a lot of children and their parents who have celiac disease. However, when these people have been on a strict gluten-free diet, their celiac disease should have got completely better, and therefore they should not be called “diseased” any longer.

So when I see healthy children in my clinic, who have previously been diagnosed with celiac disease, I do not see them as “diseased” any longer. I also think that it would be unhealthy for the children to label themselves as having a disease. This is a bad thought. They have previously had an illness but it has now been treated with a gluten-free diet.
What I am teaching these children is to say that they are “celiacs”. This means that should they eat gluten again, then they will become diseased again. But they are not diseased right now – they are better.
However, unfortunately, this is not exactly true. It has been shown in adults that despite a strict gluten-free diet, more than half still have abnormal gut tissue. The older the person and the longer it takes for diagnosis, the less likely it is that you will fully recover. Hence the critical need of diagnosing people very early in their illness. This can mean making the diagnosis before significant gut damage occurs.  The research into this shows that they are not usually being strict enough on their diet. The need a No-Cross-Contamination-Gluten-Free-Diet.
Nevertheless, I do not like to call healthy children diseased.
By the way, I do not like the term “gluten-free diet”. I am also trying to change this language to ” I eat gluten zero”.  This is much more precise. It educates other people that even a little bit of gluten is not okay.
What do you think?
By Rodney Ford