On June 7th and 8th, Celiac Disease Foundation held its annual National Conference & Gluten-Free Expo in Pasadena, California at the Pasadena Convention Center. With more than 100 companies and over 2,800 attendees it was a record turnout. Representatives from the medical and nutritional communities spoke about the latest research regarding celiac disease and how to maintain a healthy gluten-free lifestyle. The following are summaries from each speaker who presented at the conference.
Grand Rounds at Cedars-Sinai and UCLA Medical Centers
Celiac Disease Foundation kicked off the 2014 National Conference & Gluten-Free EXPO on Friday, June 6 by hosting Grand Rounds at Cedars-Sinai and UCLA Medical Centers in Los Angeles, California. Dr. John Zone and Dr. Alessio Fasano, CDF Medical Advisory Board members, lectured to each hospital’s medical staff about the importance of diagnosing patients while debating the cost of screening 100 people to find one person with celiac disease (worldwide celiac disease affects 1 in 100 people). Dr. Zone asked clinicians to pay particular importance to screening patients with Type I diabetes, psoriasis, uticaria (hives) and Down syndrome, as patients with these conditions have a significantly higher incidence of celiac disease. In the case of psoriasis, celiac patients generally have worse symptoms than most psoriasis suffers, but show significant improvement on a gluten-free diet. Uticaria suffers also tend to improve on the gluten-free diet. Dr. Fasano discussed the need to recognize celiac disease as one of the world’s most prevalent and underdiagnosed genetic autoimmune disorders with lasting health repercussions. He cautioned that in addition to those with diagnosed celiac disease or wheat allergy, there are a subset of people who report improvement on a gluten-free diet and that these people should be studied to determine if gluten or another substance is the culprit. Celiac Disease Foundation thanks ImmunsanT for their generous donation in support of Grand Rounds.
Dr. Alessio Fasano, Center for Celiac Research
Dr. Alessio Fassano started the conference weekend with a presentation incorporating one of technology’s most popular forms of communication: texting. He asked the audience several questions and polled the attendees who answered via text messaging. It was an interactive way to engage the audience in his presentation. Dr. Fassano talked about how celiac disease can be activated by a combination of environmental triggers, a leaky small intestine, and genetic susceptibility. The rate of incidence of celiac disease has increased greatly in the past few decades, though this is not due to any genetic change in wheat which has remained the same for over a hundred years. He further discussed non-celiac gluten sensitivity which is currently very difficult to diagnose due to the lack of biomarkers. Dr. Fassano also mentioned that the 20 ppm (parts per million) is a good threshold for the maximum amount of gluten food can have to still be certified safe to eat for people with celiac disease.
Dr. Dan Adelman, Alvine Therapeutics
Dr. Dan Adelman spoke about Alvine Pharmaceutical’s upcoming drug ALV003. The drug, which completed a phase 2a trial showing that it reduces the damage done to the small intestine in patients with celiac disease eating up to 2 grams of gluten a day, is a mixture of two proteins. These proteins specifically target and degrade gluten, and are designed to help patients with celiac disease in conjunction with a gluten-free diet. ALV003 is now undergoing a phase 2b trial called the CeliAction Study™, which will evaluate both the safety and efficacy of the drug. The primary endpoint of the 500 patient study is the change in small intestinal mucosal morphology, with change in symptoms and other quality-of-life measures also being recorded. Dr. Adelman spoke about the importance of clinical trials participation as without an adequate number of trial participants there can be no therapeutic treatment other than the gluten-free diet.
Dr. Stan Naides, Quest Diagnostics
Dr. Stan Naides introduced Quest Diagnostics’ new website celiacanswers.com. The website offers resources such as a symptoms survey, patient stories, how to request the celiac disease panel test, and how to interpret results. The test from Quest Diagnostics is highly sensitive and specific. Testing is essentially the only way to know if an individual has celiac disease, thus it is imperative for individuals to get tested before beginning a gluten-free diet. In addition, the website also offers a “For Healthcare Providers” section listing patient symptoms that should trigger screening.
Emily Walsh, LabCorp
Emily Walsh shed light on LabCorp’s genetic testing methods used for celiac disease. She shared that less than 20% of celiac disease patients have been formally diagnosed, and that it takes an average of 11 years for a patient to be diagnosed after the onset of symptoms. This likely can be attributed to the fact that there are a wide variety of symptoms for celiac disease, and many of them can present in many other diseases that are higher on physicians’ radars. Another stumbling block in the diagnosis of celiac disease is that many people go on a gluten-free diet before being tested. If this is the case, there are now two options for diagnosis. One can either go on a gluten challenge, and consume gluten for 2 months to cause antibodies to return in the blood stream for an IgA or IgG test and a biopsy, or one can have an HLA genetic test. The HLA test is accurate even for those on a gluten-free diet. It tests for the DQ2 and DQ8 gene variants that one must have in order to develop celiac disease. However, since 30% of people have one of these variants, this test is only useful to rule out the possibility of having or developing celiac disease.
Dr. John Zone, University of Utah
Dr. Zone spoke about the necessity of gluten-free skin products for people with celiac disease and non-celiac gluten sensitivity. According to scientific research, gluten cannot enter through the skin except if the skin is broken. Gluten is not lipid soluble, thus it cannot enter intercellular lipid pathways like other products such as nicotine patches. For patients with no skin conditions, the only products that Dr. Zone states must be gluten-free are lip products, such as lipstick or chap stick since these products are routinely ingested. He asked the audience if anyone thought they had a reaction to using gluten-containing shampoo or conditioner. Several people raised their hands. Dr. Zone explained that in order to confirm a gluten-related reaction, researchers would need to experiment by applying gluten directly to the skin, but since such a study would be morally difficult to conduct, there is no definitive answer to the reactions some patients may have. Dermatitis herpetiformis, however, is associated with gluten exposure and does resolve on a strict, gluten-free diet.
Pam Cureton, RD, LDN, Center for Celiac Research
Dietitian Pam Cuerton presented on the importance of seeing a dietitian immediately after diagnosis and beginning a gluten-free diet, as well as when symptoms are persisting. Sometimes, repeated gluten exposure may be occurring, so rather than further restricting your diet, you should repeat celiac disease panel blood testing. If continued gluten-exposure is eliminated as a reason, and you are still experiencing symptoms, then other food intolerances should be considered (lactose intolerance and FODMAPs are common). Many times, while on the gluten-free diet, unwanted weight gain occurs. Although undesired, this weight gain is actually a sign of a healthy body that is now absorbing nutrients and healing. To avoid this unwanted weight gain, Ms. Cuerton suggested keeping a food diary, limiting pre-packaged foods, using smaller bowls and plates, making treats less accessible and reading nutrition facts.
Pamela Giustro-Sorrells from Pamela’s Products, Lucy Gibney, MD from Lucy’s and Rachel Berliner from Amy’s each spoke about the creation of their gluten-free companies in a panel led by Danna Korn, author of the Living Gluten-Free for Dummies series. Ms. Sorrells explained how her grandparents had a local health food store and how she hated the taste of the products, thus she began creating her own. Dr. Gibney recalled how she started baking for her son, who had numerous allergies, because the products available for her son were not appetizing. Ms. Berliner talked about how she and her daughter Amy continued to receive requests from people to make delicious gluten-free meals. These three women have been pioneers in the gluten-free industry and have contributed many great products for people on special diets.
CDF thanks all the bloggers who shared their conference experience with the gluten-free community. CDF especially thanks the following ladies for providing descriptive information to write the conference recap.
Erica Dermer from Celiac and the Beast
Bailey from Gluten-Free Bestfriends
Amy Fothergill from Amy the Family Chef