By Laura (The Gluten-Free Traveller)

Recent research from the Celiac Disease Center at Columbia University Medical Center has found that the number of US patients seeking and receiving the small bowel biopsy is very low.

A huge percentage of people with celiac disease in the United States are undiagnosed. Whilst there are many countries around the world where biopsy rates and diagnosis rates are low, compared with people in Western Europe and Scandinavia for example, in the US people are less likely to be diagnosed.

These findings do not surprise me. Many of my gluten-free friends are not officially diagnosed and have never seeked a biopsy. I also know many other people who, whilst they suffer from text-book symptoms of celiac disease, refuse to go for a biopsy.

The research also found that some of these undiagnosed patients are actually meeting with a gastroenterologist and perhaps even having an endoscopy but they are still not getting the biopsy, which they need to get an official celiac diagnosis.

Why should this be the case?

I can think of a couple of possible reasons. My first thought is the often ridiculous cost of having a procedure such as this done in the US compared to other parts of the world. Personally, I was diagnosed in the UK. After meeting with a gastroenterologist and discussing my horrible symptoms, it was suggested that I may have celiac disease and it was recommended that I have a small bowel biopsy to find out. In a country where we have a National Health Service (NHS), this procedure wouldn’t cost me anything… so why wouldn’t I get it? I wanted a diagnosis. If my doctor had turned around and told me that she recommended I get a biopsy but that it would cost me $5000, perhaps I wouldn’t have been so eager to be officially diagnosed.

Another possibility is the culture of self-diagnosis in the US. Many people who have the realization that gluten is a problem simply take it out of their diet. This is of course logical to stop eating whatever is making you feel bad but the issues comes if you then decide you want a celiac diagnosis. You need to be eating gluten consistently to get a positive biopsy and for many the thought of going back to eating gluten for an official diagnosis just isn’t worth the pain.

Why do you think biopsy and in turn diagnosis rates are particularly low in the States? Did you get the biopsy?