By Kristin Voorhees, MA, and Brenda Flaherty for the National Foundation for Celiac Awareness (NFCA)
The National Foundation for Celiac Awareness (NFCA) kicked off this year’s Celiac Awareness Month by hosting the live webcast “State of the Union: A Live Chat with Experts on Gluten-Related Disorders” on May 3, 2012.
Alice Bast, Founder and President of NFCA, moderated the 60-minute event, which featured internationally renowned experts in the field of celiac disease research including Stefano Guandalini, MD of the University of Chicago, Alessio Fasano, MD of the University of Maryland, and Melinda Dennis, MS, RD, LDN of Beth Israel Deaconess Medical Center.
The event supplied patients and providers alike with the latest news in gluten-related disorders research free of charge. The panelists’ discussions were based on questions and concerns submitted to the NFCA team in the months leading up to the special webcast.
Dr. Guandalini kicked off the event by identifying the differences between celiac disease and non-celiac gluten sensitivity and explaining the important role guidelines play in diagnosing a gluten-related disorder. Next, the audience heard from Dr. Fasano, who touched on multiple research ventures in the field, including the timing of gluten introduction in infants. Finally, Melinda Dennis provided tips on how nutritional counseling can ensure that patients live a healthy gluten-free life.
Because there is never enough time to cover all of the celiac and gluten-free topics we’d like to discuss, NFCA asked the trio of experts to participate in this follow-up Q&A session. Here’s what they had to say!
Question for Dr. Guandalini:
Researchers talk about the need for “biomarkers” to test for non-celiac gluten sensitivity, a newly termed condition falling within the spectrum of gluten-related disorders that is estimated to affect a greater number of people than celiac disease. What exactly is a biomarker, and why is it so essential?
“I would say that a biomarker or a ‘biological marker’ is a biological substance produced by an organism in response to a disease state, that can be detected by any laboratory or imaging technique thus allowing an assessment of the disease presence and/or progression.
As an example, the detection of antibodies against the enzyme tissue transglutaminase (tTG test) in the blood is used to detect the presence of celiac disease. In gluten sensitivity, research has not identified any biomarkers. What this means is that we have currently no objective parameter on which to base our diagnosis of this condition. Some say anti-gliadin antibodies (AGA) are a marker for gluten sensitivity. However, while about 50% of patients with gluten sensitivity may have elevated AGA, it turns out that up to 20% of healthy individuals have this same finding. Hence, one cannot rely on this as a biomarker. In fact, not only do half of the gluten sensitive patients have normal AGA, but, if we consider the prevalence of gluten sensitivity to be about 2%, this means that out of 100 people, 21 will have high AGA. Of these 21, only 1 however will be gluten sensitive! As you can see, there is no value of AGA as a biomarker.
Now, given the unavailability of a biomarker, one can immediately understand how impossible it is to make an accurate estimate of the true prevalence of gluten sensitivity. None of the figures you read on the Internet are based on hard facts, and certainly one cannot base the prevalence of gluten sensitivity on the quantity of gluten-free food sold! If this were a reliable mean of assessment, then one would conclude that some 290 million Americans are in need of methyl-xantine supplementation, as almost all of us drink coffee on a regular basis!”
– Stefano Guandalini, MD
Professor and Chief, Section of Pediatric Gastroenterology
University of Chicago
Founder and Medical Director, Celiac Disease Center
Question for Dr. Fasano:
“As we learn more about how gluten impacts different systems in the body, we’re looking into the effects of gluten on the brain. Specifically, we’re measuring substances in blood sera that indicate whether patients are sensitive to gluten. We’re hopeful that this research, which we’re conducting in collaboration with Johns Hopkins Bloomberg School of Public Health and the Maryland Psychiatric Research Center, will provide an answer to that question.
So far, we have found a higher prevalence of a particular biomarker that indicates inflammation in the brain in schizophrenic patients when compared with healthy controls.
We looked specifically at the tTG6 autoantibody, which is produced in the brain and related to gluten ataxia or the lack of coordination of muscular movements. For the first time, we showed that a substantial subgroup of schizophrenic patients is positive for antibodies against this tissue transglutaminase (tTG6) that is mainly expressed in the brain.
By identifying a potential biomarker of gluten sensitivity and neuroinflammation in patients with schizophrenia, we might be able to provide clinicians with a diagnostic tool to specifically target patients who would benefit from a gluten-free diet. Although more research is needed, including trials of a gluten-free diet with schizophrenic patients with high levels of the tTG6 autoantibody, these preliminary findings are very promising.
The article was published online on April 19, 2012 in Schizophrenia Bulletin.
Watch for an upcoming research article on this topic to be published soon.”
– Alessio Fasano, MD
Professor of Pediatrics, Medicine, and Physiology
Director, Center for Celiac Research
Director, Mucosal Biology Research Center
University of Maryland School of Medicine
Question for Melinda Dennis:
Obtaining all necessary nutrients can be difficult on a restricted diet. Can you please name three of the most common nutrients compromised on a gluten-free diet and share a simple tip that can help to ensure the nutrients are acquired in adequate amounts?
“Iron, calcium and vitamin D are three of the most common nutritional deficiencies that patients adhering to a medically necessary gluten-free diet experience.
When it comes to iron, choose foods that are naturally rich in iron. These can include:
- Lean beef, pork or lamb, turkey, chicken, egg yolks, most kinds of seafood. When choosing animal and seafood it is preferable to select humanely raised and sustainably harvested products.
- Labeled gluten free grains, such as teff, amaranth and quinoa
- Dried fruits
- Green leafy vegetables
The vast majority of people with celiac disease benefit from taking a gluten-free multivitamin. Take a gluten-free multivitamin with iron if indicated by your age, gender and iron lab values.
Calcium and vitamin D are found primarily in dairy products. If you are lactose intolerant, try to get as much calcium from dairy and non-dairy sources, such as fortified rice, almond, hazelnut, soy and hemp milk (all labeled gluten-free), or lactose-reduced or lactose-free milk products. You can also use a labeled gluten-free calcium supplement (preferably citrate formula) with vitamin D3 to get adequate calcium. (Please ask your health care provider for the amount recommended for you.) Some people need an additional vitamin D3 supplement to reach their vitamin D goals. Supplementation should be individualized and based on your vitamin D blood levels.”
– Melinda Dennis, MS, RD, LDN
Nutrition Coordinator & Research Investigator, Celiac Center
Beth Israel Deaconess Medical Center
Still interested in learning more from these top experts? You can watch a full replay of the original webcast here.
July 10th, 2012