Why Are Biopsy Rates So Low in the US?

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?



4 thoughts on “Why Are Biopsy Rates So Low in the US?”

  1. Cost is likely a factor here in America, as is the trouble of taking time off work, the fear of an invasive treatment and the general distrust/dislike of doctors. But I think a lot of it has to do with the doctors themselves. It took me many years and many doctors to finally get one to believe I had Celiac disease and test me because I was overweight and told that ‘only skinny people have Celiac’. I eventually did get a biopsy which was inconclusive and the antibody test, again inconclusive. Eventually I was diagnosed through an exclusion diet but I was the one who did all the research, figured out what I had and pressed for the testing and eventually put myself through the exclusion diet. I hear the same story from other women with Celiac disease all the time. Perhaps American doctors just don’t yet understand the disease and how important it is to test patients.

  2. What is the benefit of getting a biopsy anyway? What about the blood test, isn’t that cheaper, but still expensive so how can you keep getting it until it comes back negative. There doesn’t seem to be any point to spending all this money unless your rich because in the end doctors don’t seem to have much to offer except the advice to get gluten out of your diet. That is a lot of moeny, time and intrusiveness to find out something you already knew.

  3. Sue, the blood test is only to determine the presence of the antibody; the antibody presence isn’t restricted to Celiac alone. Other stimuli can cause the same antibody to occur, hence the two-step process to diagnose. The biopsy reveals the villous (sp?) atrophy that confirms Celiac.

    I would imagine there can be issues with insurance coverage relying on self-diagnosis over an official diagnosis.

  4. The protocol is blood test, biopsy, then gluten-free diet followed by gluten challenge and another biopsy. When my blood test came back with high numbers, the doctor still wanted to do the biopsy. I said I didn’t have $2000 for that; I asked how sure was he from the blood test? He said 99% sure I’m a celiac. I opted to try the diet and see what happened. What other illnesses present like celiac and go away after adopting a strict gluten-free diet? If it walks like a duck and quacks like a duck, it must be a duck. He said the diet is very difficult, so he would hate to put me on it if it wasn’t necessary. I think the biopsy is more for the doctor’s benefit. Even after a negative biopsy, doctors will tell people to try the diet to see if they get better. And to me, the gluten challenge is like hitting youself in the head with a hammer for a second time to confirm that it still hurts. Or is it to further benefit the doctor?

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