In September 2009, an important conference took place in Chicago. Takeda sponsored the American Gastroenterological Association (AGA) Education Conference. The goal of the conference was for celiac experts to share information about celiac disease with other doctors, though as the conference name implies, most were gastroenterologists. We all know that the first line of defense for celiac patients is the primary care doctor. The good news is that the many problems and challenges of diagnosing patients with celiac was covered in detail during the two day event. Admitting there is a problem is the first step to correcting the situation – hopefully.
As one would expect, celiac experts like Dr. Peter H. Green and Dr. Joseph Murray were speakers at the conference. However, the most exciting news for me was the fact that Shelley Case was also a featured speaker. Shelley was the only dietitian invited to present at the event – hardly surprising since she is considered the foremost authority on the gluten-free diet in North America. Her topic was “The Gluten-free Diet: What Every Physician Needs to Know”. Almost every doctor I met during my own celiac journey (and most I’ve met since my diagnosis) do not believe that people can eat great food on the gluten-free diet and therefore, most patients won’t follow the diet even with a biopsy diagnosis of celiac. Therefore, some doctors seem to try and avoid diagnosing patients with celiac disease. Thankfully, when Shelley was finished speaking, many doctors scrambled to pick up her book.
Shelley agreed to speak to me with me about this conference even though she is a very busy lady. She is always going somewhere to speak, work with the Canadian Celiac Association and constantly updating her best selling book The Gluten-Free Diet: A Comprehensive Resource. Shelly went over many details of the conference with me recently, but first she shared some interesting news about a similarity between the U.S. and Canada. Most of us know there is a problem getting people properly diagnosed with celiac disease in this country. Shelley reports that Canada doesn’t seem to be doing on so well on that front either. The last survey they did regarding length of time for a celiac diagnosis ws 11.7 years. That was several years ago and they are now analyzing the data from the last such study. Results are preliminary but so far it’s not looking like there has been improvement to shorten that time substantially. At the Chicago conference, there were several issues discussed regarding why many doctors are not giving their patients the proper care and service when it comes to celiac disease. To keep this post a quasi acceptable length, we’re just going to talk bout the blood tests for celiac disease.
Problems plague the celiac blood tests and doctors not ordering the complete celiac panel is just the start of it. Another drawback is that some patients may have a false negative on the IgA tTg or IgA EMA test, due to them having an IgA deficiency. IgA deficiency is much more common among people with celiac than in the general population. Sounds confusing, right? Yes, that’s another problem. If a doctor doesn’t understand the many nuances involved with the celiac blood tests, they’re going to send many patients away with a clean bill of health. At least they’re going to tell the patient that they do not have celiac. To learn more about celiac genetic testing (different than celiac blood tests), read the New York Times take on the topic, as well as the genetic testing article from Shelley’s website.
I’ve met countless people that tested negative on the celiac blood tests but they tried the gluten-free diet anyway. When the diet resolved a host of health issues, they stuck with it. Those people will never know if they have celiac (or non celiac gluten sensitivity) because they will never go back to eating gluten to find out. Please forget anything you’ve heard about how much gluten is enough to consume – and how long it must be consumed – in order to be properly tested for celiac disease. Some experts now agree that they do not know the exact answer to either question. The estimates of several pieces of bread a day might be correct, but the length of time this must be consumed for accurate test results is not actually agreed upon. We’ll cover the host of problems with the biopsy test next week, including the fact that it might not be the gold standard that doctors have considered it for many years.
OK – now for the fun part! Leave a comment below if you would like to win a copy of Shelley Case’s “must have” book The Gluten-Free Diet: A Comprehensive Resource Guide. Shelley has generously offered to donate FIVE of her books for our lucky readers. The deadline for comments is Sunday, February 14th. Winners will be announced on this post on Monday, February 15th. Good luck!
UPDATE 2-15-10: Congrats to the following winners of Shelley Case’s book! They are Julia Lynch, Ina, Angie Adams, Will and Elisabeth Mills.
Special thanks to Shelley Case for sponsoring this give-away and most especially for taking the time to speak with me about the conference in Chicago!