In September of 2009, a very important Celiac Conference took place and Shelley Case was the only dietitian asked to speak. She was kind enough to speak with me and share a lot of eye opening information about the road blocks celiac patients still face. Last week, we talked about negative aspects of the celiac blood tests. Assuming one gets past that hurdle and moves on to the all important endoscopy, even more problems can arise.
For many years, the gold standard for a celiac diagnosis has been the biopsy, via an endoscopy. Finally, many celiac experts are considering the fact that the “gold standard” test might look more like tarnished silver these days. In fact, those words were used in the title of one of the conference sessions. Shelley Case shared with me some of the many problems discussed about the test during the conference. While it’s excellent that this information is finally coming out into the open in the medical field, the many problems can certainly not be corrected overnight. For that reason, the false negatives and “inconclusive test results” will likely be handed out to patients for a while.
First off, many doctors do not take a sufficient number of biopsy samples from the intestine when looking for evidence of celiac disease. Experts recommend a minimum of 4 to 6 samples and some doctors take as many as 8-10. An insufficient number of samples being taken can result in false negative test results if the samples are only taken from healthy villi. Experts now know that it’s also important to take a sample from the duodenal bulb. It’s possible that the damaged villi might show up only in this area which means if no sample it taken from the duodenal bulb, a patient could be told they don’t have celiac even though they do.
Other issues plague the road to a biopsy proven celiac diagnosis. The biopsy samples may not be cut and stained properly, which can also result in inconclusive (or false negative) results. As many of us know, inconclusive results often lead to patients being told to eat whatever they want to because they don’t have celiac disease. Another problem is the not all pathologists interpret the biopsy samples the same way. Some believe that only totally flattened villi can result in the conclusion that the patient has celiac. However, there are varying degrees of damaged villi. Due to the many obstacles current celiac testing methods present, it’s believed that as many of 20% of endoscopies looking for evidence of celiac result in a missed (or wrong) diagnosis. IBS seems to be the most commonly given mis-diagnosis when a patient actually has celiac disease. No surprise there, of course.
I’ve got to backtrack to the celiac blood tests for a moment. At the Chicago conference, Peter H. Green, MD, discussed the fact that there is something called inter-lab variation going on, which is a big problem. This was proven when the same blood panels were sent to different labs and in turn, different results were given by the lab techs interpreting the panels. That is why Dr. Cynthia Rudert in Atlanta (and many celiac experts) will only send celiac panels to a few trusted labs, including but not limited to, Prometheus Labs.
It’s all coming together now, right? Many people who did have biopsies (that I’ve personally met) were told they did not have celiac went on the gluten-free diet anyway. Many found out that being gluten-free resolved most, if not all, of their health issues. The most understandable explanation for this is that they either have celiac and the biopsy was done incorrectly, or they have gluten intolerance. Either way, the treatment is avoiding gluten.
Celiac experts are in agreement that many road blocks still exist in getting some people properly diagnosed with celiac disease. Fortunately, there is much more awareness and education in the medical community about the condition now, than just a few years ago. From my own personal experience, doctors typically do not like to admit that they are wrong. So, my hat is off to the celiac experts who are telling it like it is in an effort to actually improve the situation. The experts also agree that family doctors, dentists and dietitians are in great need of being thoroughly educated abut celiac disease. After all, what does it matter if the blood tests and biopsies are not being done – or interpreted – properly if a patient never gets to those stages of testing?
The latest edition of Shelley’s book The Gluten-Free Diet: A Comprehensive Resource Guide is now available for those who are interested in educating themselves about what is and is not gluten-free. The book covers proper nutrition guidelines for people following the gluten-free diet. Oh, and the fun stuff is in the book too – like where all the gluten-free bakeries (in North America) are and a listing of over 3100 specialty gluten-free foods. If you thought there was no such thing as a gluten-free Cheeze-It (type) cracker, think again!
Special thanks to Shelley Case for her meticulous note taking during the conference. She got into some things that I can’t understand myself enough to explain here. It was a conference for doctors and not patients for a reason. Next week we’ll talk about gluten intolerance and the introduction of gluten to infants.