Dinner with a Celiac Disease Expert

March 6, 2012 at 10:02 am Leave a comment

Some days, you just get lucky.

Two weeks ago, I had a fabulous chance to consult with an expert, learn something new and enjoy a delicious dinner in very good company.

The saying goes, if you want to learn about something, go to the source. Not often does the source come to you.

Daniel Leffler, MD, MS

Dr. Dan Leffler

While traveling through the area on business, Scientific/Medical Advisory Board member Dr. Daniel (Dan) Leffler of the Division of Gastroenterology at Beth Israel Deaconess Medical Center in Boston, graciously took the time to swing through Philadelphia to meet with us. As a result, Dr. Richard Mandel, NFCA Board of Directors member, and I enjoyed a delightful dinner with Dan in an atmosphere where we could catch up on the latest research and exchange ideas about the state of celiac disease today.

Thanks to some sleuthing by my associate Kristin Voorhees, we landed at Devon Seafood Grille on Rittenhouse Square in Philadelphia. Let me tell you, it is the place to be!

Devon Seafood Grille

Devon Seafood Grille - a gluten-free find

Because Dan had to catch a plane that evening, we dined early — 4 PM. No, it wasn’t the Early Bird Special. It seems that Devon serves all day, so no worries there. The best part is that they have a separate and quite complete gluten-free menu. Actually, many of the items on their “regular” menu are gluten-free. And, the waiter was totally knowledgeable about what was gluten-free and what was not, down to the spices used in various dishes. Impressive and reassuring!

So, after diving into oysters selected from the current best across the country and enjoying the freshest of splendidly prepared seafood, we got down to the “what’s what” part of our get-together.

Mussels at Devon Seafood Grille

You can't get much fresher than this!

The big news is all about terminology.

That’s right, there are changes afoot concerning how we define and refer to celiac disease and other related disorders. Called the “Oslo definitions,” a newly released document composed by a team of 16 physicians from seven countries outlines the preferred terms, along with terms that they assert don’t best describe the condition under discussion. That’s right; some are in and some are out.

The goal here is to develop a common language which the entire scientific, academic and healthcare communities, along with the general public, can use to refer to this range of illnesses now going under a myriad of terms that can (and do) have different meanings to different people.

Note: The name “Oslo definitions” comes from the most recent International Coeliac Disease Symposium held in Oslo, Norway in June 2011 where new definitions were introduced and discussed. The review continued after this meeting resulting in the formal document that was released in February 2012. Yes, it is hot off the presses.

While not the law of the land at this point, this consensus document has the support of leading experts worldwide, including Dan Leffler who authored the paper on behalf of the impressive group based on months of studied consideration by these medical experts and researchers, all focused on the field of celiac disease.

No, I am not going to list all of the definitions here as there is quite a list of terms, most familiar to all of us, along with some that are not part of the lay person’s daily vocabulary. (Yes, that would be me.) Should you read the document, you will see gluten sensitivity and gluten intolerance joined with other descriptors such as latent celiac disease, gluten ataxia, pediatric classical and more.

The document defines celiac disease (or, as they write it in Europe, coeliac disease). Here it is: “a chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals.”

It also recommends a new way to refer to the spectrum of illnesses that involve gluten. “‘Gluten-related disorders’ is the suggested umbrella term for all diseases triggered by gluten and the term gluten intolerance should not to be used.”

There is much more to this story, of course. You can get a quick summary in NFCA’s Research News.

In short, this was a very satisfying and interesting evening. We enjoyed delicious gluten-free food and learned about the latest thinking in the field of celiac disease.

Chalk one more up for “a good time was had by all”!

– Nancy

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