The conference in Columbus at Nationwide Children's hospital is always full of great information. But the big draw this year was to hear Dr. Stephano Guandalini talk and to meet him in person. While some of the information I learned was new, it helped to further again hear information that can refute rumors and myths that are circulating in the gluten free community.
The presenters were Dr Ivor Hill, Dr Tracy Ediger, Steve Plogsted and Dr. Guandalini.
Dr. Ivor Hill presented on the genetics of Celiac Disease. I want to make one thing very clear.
DOING A GENETIC TEST FOR CELIAC DISEASE IS NOT SUFFICIENT FOR A DIAGNOSIS!
The genes for Celiac Disease primarily reside on one single chromosome, #6. (We have 23 pairs of chromosomes.) This gene family, known as HLA, controls the immune system. All patients with Celiac Disease have HLA-DQ 2 or HLA- DQ8. But people without Celiac Disease can have these genes as well, as much as 30-40% of the population. Only 3% of those with these genes will develop Celiac Disease. This is why genetic testing is best used in ruling OUT Celiac Disease, not necessarily give a definitive diagnosis.
Dr Tracy Ediger presented on the importance of testing for Celiac Disease, and explained the difference between Celiac Disease, wheat allergy, and Non-Celiac Gluten Sensitivity.
One of the things that he mentioned, as did Dr. Ivor Hill, is that the TTG test for Celiac Disease is the most cost effective and reliable of all the tests. They suggested that the traditional Celiac Disease panel, a panel of 4-5 different lab tests, may no longer be necessary. That being said, no test is fool proof. The sensitivity of the TTG test is 95%. If you have symptoms but blood work comes back negative, always consider the biopsy. And if a family member has Celiac Disease, and you test negative, it was suggested that screening be considered every 3-5 years, as this disease can present at any time.
Dr Ediger also discussed associated diseases. Five percent of patients with Type 1 Diabetes and Down Syndrome are likely to have Celiac Disease, and patients with IgA deficiency are 10-15 times more likely to have Celiac Disease. The rate of thyroid disease diagnosis in patients with Celiac Disease is 3 times higher than in the normal population. This is true even if you've been on a strict gluten free diet for years. They were careful to note that having Celiac Disease does not "cause" thyroid issues.
So what do we do with NCGS? The team at Nationwide Children's Hospital no longer believes that 6% of the population has non-celiac gluten sensitivity. While they believe that the disease exists, they do not believe that it affects as many people as originally thought. The numbers are just too hard to pinpoint, as the method of diagnosis (ruling out other diseases and using a double blind placebo study) is long and not as simple as a genetic or blood test.
Steve Plogsted is a pharmacist and presents every on the issues of gluten in medication. Mr. Plogsted said that the biggest issue for medications, when it comes to gluten, is the use of starch in a pill. He continues to report that the vast majority of starch used in medications is from corn. The biggest example of gluten in a medication is Tricor, a medicine used to treat high cholesterol. The outside of the pill is coated with wheat, and this may not be disclosed on the product information sheet.
Steve's biggest concern is a recent study done through the National Foundation For Celiac Awareness. Over 30 drugs were tested, both prescription and over-the-counter. Three tested higher than 20 PPM. The big concern is that some of these drugs do not contain gluten ingredients, and are therefore testing high due to cross-contact in the manufacturing line.
Gluten in medications IS still a concern, even though the FDA doesn't think so. There is legislation in committee right now to make require labeling. Unfortunately, there is not a definition for "gluten free" in the pharmaceutical industry as there is in the food industry. In the meantime, glutenfreedrugs.com and pillbox.com are great sites to research the gluten free safety of medications. Pillbox.com will also list other allergens present in medications.
Dr. Guandalini presented many interesting facts that impact the future of Celiac Disease diagnosis and treatment. One thing is certain- the prevalence of Celiac Disease is on the rise among all races. And not only is it increasing, it is presenting in new and "atypical" ways that make definitive diagnosis that much more important. And more than diagnosis, there needs to be a standard of follow-up care due to associated diseases and health risks.
Dr. Guandalini stated that intestinal damage in children healed dramatically faster than that of adults. As adults take longer to heal, this can lead to other health issues. This connects to research showing that the cost of living with Celiac Disease so much higher than "normal" patients. Dr Guandalini shared data that showed that patients with Celiac Disease spend $7,000-$8,000 more PER YEAR on medical bills than those living without the disease.
While there is no cure for Celiac Disease, there are many treatments on the horizon. ALV-003 is a drug in trial that may prevent the damage done to the body when a person with Celiac Disease consumes gluten. It is also important to state that NONE of the over-the-counter drugs on the market DO NOT help digest gluten, nor do they prevent damage to the intestine. Not Gluten Cutter, not Gluten Ease, not Gluten Digest- NONE of them. So please, don't be mislead in buying them.
Dr Fasano and his team are working on a drug called larazotide, that may help maintain the intestinal barrier and prevent the issue of "leaky gut." While anecdotal research shows that patients feel better when being given a gluten challenge, there is no data on the actual level of intestinal inflammation and villi destruction, at least as of this posting date. Much more research needs to be done.
A vaccine, Nexvax 2, is in research that would work on the HLA DQ2 gene (which is present in 90% of those with Celiac Disease) and help create immune tolerance to gluten. This is still in research and trials. More can be found at this link - http://www.immusant.com/nexvax2/.
Dr Guandalini stated that even among the medical community, there is frustration on how little doctors know about Celiac Disease, proper diagnosis, and effective follow-up care. Dr. Guandalini and Dr. Ivor Hill will soon be releasing a definitive paper on the first-ever standard for follow-up care for those who are newly diagnosed.
I feel that those of us who are advocates for Celiac Disease Awareness can and should focus some of our energies on educating doctors in our area. Reach out to your area hospitals, physicians, and dietitians and offer to share with them latest research. When we can better enlighten the doctors around us, they in turn can diagnose and care for more people with Celiac Disease. Those of us who are not afraid to speak up are the pioneers for those that do not have a voice.