CDF Conference and GF Expo Review, Part 1

CDF Conference and GF Expo Review, Part 1

Celiac_Disease_LogoI was honored to be named an “official blogger” for the recent Celiac Disease Foundation Educational Conference and Gluten-Free Expo. I was accompanied by some amazing celiac and gluten-free bloggers including:

Alison –  A Girl Defloured

Andrea –  Rockin Gluten Free

Brian – East Bay Celiac (a local blogger for those in the EB of SF)

Chrissy –  Glam without Gluten

Erica –  Celiac and the Beast

Kim –  Gluten Free in Arizona

Sara –  Can I Eat Here

We had so much fun in Pasadena. The conference and expo were both jam packed. It was actually hard to blog at moments while trying to fight the crowds, especially around the popular tables. There is so much to cover that I am breaking this review into two parts. Part one, will cover the educational sessions of the conference. Part two, released early next week, will cover the gluten-free expo including all the yummy product reviews.

The conference featured several distinguished and well-respected speakers including Dr. Peter Green from Columbia University and Dr. Joseph Murray from the Mayo Clinic. There were also several presenters from various pharmaceutical companies reporting on some interesting celiac disease (CD) drug and vaccination developments.

DrGreenSpeaker, Dr. Peter H. R. Green, Columbia University, with the Founder of the Celiac Disease Foundation, Elaine Monarch

The first speaker to present was Dr. Joseph Murray, gastroenterologist and professor of medicine in the division of gastroenterology and hepatology at the  Mayo Clinic:

DrMurray

Speaker, Dr. Joseph Murray, Mayo Clinic

Here are a few points from Dr. Murray’s presentation, “Celiac Disease: The Silence of the Intestine”

– Celiac disease is European in origin

– It used to be rare in North America

– CD starting increasing in the US around 1980

– It increased dramatically in the 1990’s

– It stabilized in 2005 but has not declined and we have a continued high level of CD in the US

– Four times as many reported remain un-diagnosed

– Only five percent of those with a positive blood draw will actually be diagnosed with CD (through a biopsy)

– It is clear that something significant can happen in a person’s life that changes their ability to tolerate gluten

– Thyroid disease is most common among the white population of those with CD

– Patients with CD tend to have a lower body mass index

– According to a military study on CD, patients with a positive blood marker are four times more likely to die within 45 years of the positive marker

– Anyone with Type 1 Diabetes should be tested for CD

– 30% of CD patients are asymptomatic (without symptoms)

– A missed CD diagnosis is a missed opportunity for health and longevity

– Once a patient is diagnosed with CD, their health care costs actually decrease

– CD and gluten sensitivity have become a “public health issue.” What are we doing that is causing this increase in CD? This CAN be prevented

And now…on to Dr. Peter Green, Director of the Celiac Disease Center at Columbia University

DrGreen2

A few highlights of Dr. Green’s presentation, “The Lord of the Villi”

– Abdominal pain accompanied by growth issues are the most common indicators of CD in children. I’ve also read that irritability is as well

– The most common signs of “silent celiac” are irritable bowel syndrome, osteoporosis and anemia

– Females are diagnosed 2 – 3 times more than males

– Oral presentation of CD are often white spots on teeth, enamel issues and oral ulcers

– Patients with a CD diagnosis often have low cholesterol (100 or so)

– Large forehead can be an indicator of gluten sensitivity…Dr. Greene used this same photo that Dr. Tom O’Bryan used in his presentation:

“According to an Italian study titled, Large forehead: a novel sign of undiagnosed coeliac disease,  the face divided into 3 equal areas: bottom of chin to under the nose, under the nose to the glabella (spot between the eyes), and glabella to the hairline, should all be equal size.  When individuals have a larger forehead size, their chances of gluten intolerance, and/or celiac disease increase (see photo below).”

The forehead on the left is larger indicating possible gluten sensitivity

The forehead on the left is larger indicating possible gluten sensitivity

– The earlier the diagnosis of CD the less likely one is to develop an auto-immune issue

– Strict adherence after diagnosis reduces the likelihood of auto-immune issues

– Heart disease/stroke and lymphoma are the most common causes of death among people with celiac disease

– Over the counter probiotics are not to be trusted

– There is no “basis” for people with CD to avoid dairy (if you are up for a little reading that indicates the opposite, see Dr. Vikki Peterson’s article on dairy and celiac disease)

– Patients with a CD diagnosis commonly receive inadequate medical follow-up

– Patients with CD should follow-up with an “educated practitioner”

Several pharmaceutical companies presented during a session called, “Breaking Therapies Beyond the Gluten-Free Diet.” Presenters included, Joseph Murray, MD (regarding larazotide acetate), Daniel Adelmann, MD, CEO, Alvine Pharmaceuticals, Leah Klapper, PhD, GM, Bioline Innovations Jerusalem, and Patrick Griffin, MD, CEO, ImmusanT. The panel was moderated by Dan Tomas, MD, Division Chief, Gastroenterology and Nutrition and Professor of Clinical Pediatrics, Children Hospital of Los Angeles

Discussions included the drug, larazotide acetate, which is designed to “tighten up” the bands of the tight junctions lining the intestinal wall. The over-stimulation of these bands by zonulin can contribute to intestinal permeability and potentially result in celiac disease with those who are genetically susceptible. They also discussed a potential vaccination for celiac disease which is intended to “tolerize” the “killer T cells” that damage intestinal villi as observed in those with a celiac disease diagnosis.

It was an interesting and lively discussion. There is much to be learned in this particular arena.

I’d like to give a “shout out” to Schar for offering a blogger’s night out at the amazing Melting Pot restaurant in downtown Pasadena.

 

meltingpotWe dined on amazing food, served and cooked fondue style. Everything was carefully prepared for us and all food allergies and sensitivities taken in to consideration. They offered two types of cheese fondue (which I could not partake in because I’m dairy-free), vegetables and boiled shrimp for appetizers  For this portion of the meal, Schar’s amazing gluten and dairy-free baguette was offered. Various meats, seafood and vegetables were served for the main meal.

melting pot

For dessert they served two styles of chocolate for dipping. Besides the fruit we also dipped Schar’s gluten-free graham crackers (hands down the best GF graham cracker on the market), short bread cookies and lemon wafers. It was a yummy night! The Melting Pot did a stand up job of serving this celiac and gluten sensitive blogger crowd. Thanks to both them and to Schar for hosting.
melting pot2Stay tuned for the second part of the CDF Conference and Gluten-Free Expo review. There are lots of new and interesting GF products to read about. Meanwhile, be well and continue thriving gluten-free.

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