Monday, July 06, 2009
If you’ve been through an intestinal biopsy to determine if you have celiac disease you were likely told one of two things: “your villi are very damaged, you have celiac disease” or “your villi appear normal, you don’t have celiac disease.”
The focus of a biopsy is the health or damage of your villi – the finger-like projections responsible for absorbing nutrients and giving your small intestine its large surface area (the size of a tennis court!).
While diagnosing celiac disease is important, here at the clinic we are also very concerned with correctly diagnosing the larger share of gluten sensitive patients, or those with non-celiac gluten sensitivity. But with that said, it’s not unusual for patients with severe digestive symptoms, secondary to gluten consumption to come to us confused with their negative celiac diagnosis. They have proven to themselves time and time again that gluten is no “friend” and the digestive symptoms gluten causes them to suffer are clearly no coincidence.
If they have such a severe reaction why didn’t their biopsy show it? Here’s a possible answer.
First I’d like to give credit to a dear friend, Dr Thomas O’Bryan, who has dedicated himself to educating doctors about gluten sensitivity. I’ve known Tom for many, many years and it was interesting to discover that our paths had taken such a similar turn after years of not seeing one another. Dr O’Bryan has his finger on the pulse of the research done in this area and he has pulled together several articles supporting the point I’d like to make.
First, villous atrophy should no longer be considered the “gold standard” when diagnosing celiac disease.
Second, if a patient chooses to receive a biopsy they must ensure that it includes an IEL (intraepithelial lymphocytosis – don’t worry I explain below) count so as not to miss the earlier manifestations of celiac disease.
Wow, that’s a mouthful. Don’t worry about pronunciation, let’s just stick with “IEL” and explain what it means.
When you think about it, it makes sense that the first thing that happens in celiac disease is not complete annihilation of the villi. Considering the small intestine is 23 feet long and the surface area is so large, something must happen before the destruction of the villi. Everything happens on a gradient, right? Exactly. So it should be no surprise to learn that before the villi atrophy they inflame or get irritated. That’s what the IEL count measures – the amount of inflammation. So if a biopsy is not taking an IEL count, it could very well be missing the early stages of celiac disease.
Now please understand I’m not a great fan of biopsies. But if you plan to get one you should at least get the most accurate and comprehensive data on the health of your small intestine.
If your doctor is not comfortable with the IEL count or it’s not part of his or her “typical” study, find a new practitioner – that doctor is out of step with current research.
Keep in mind also that those suffering from gluten sensitivity often show no sign of intestinal inflammation because gluten is affecting them predominantly at a system distant from the GI tract. Our book, The Gluten Effect addresses that point and explains how it occurs. So if you already know that gluten has a negative effect on you there is no need for you to reintroduce it into your diet in order to put yourself through a biopsy. Remember, reintroducing gluten can create negative effects the likes of which you may never successfully reverse. It’s a gamble I wouldn’t advise you to take.
Below is a list of journals that presented articles that all basically stated the same thing: villous atrophy should no longer be considered the “gold standard” of celiac diagnosis and IEL count is a specific marker that must be included with every intestinal biopsy to prevent missing early celiac disease. You will note that the earliest articles were written in 2002 – 7 years ago. I always say that the medical profession is about 10 years behind scientific research. So by that estimate this should be more common knowledge within the next few years. But let’s not wait that long – spread the word today!
With a little research, your doctor can find these articles: Modern Pathology (2005), Journal of Clinical Pathology (2004), European Journal of Endocrinology (2002).
Until next time, to your good health!
Dr Vikki Petersen
Founder of HealthNOW Medical Center
Co-author of The Gluten Effect