Ask the Expert: Interview with Stefano Guandalini, MD, of the Celiac Disease Center at the University of Chicago
Interview by Tiffany Janes, Delight Contributor

The Celiac Disease Center at the University of Chicago was the first such organization in the United States. The Founder and Director of the Center, Dr. Stephano Guandalini, MD, is a world-renowned pediatric gastroenterologist and celiac disease expert. Many celiac disease patients (diagnosed via intestinal biopsy) have received much appreciated gift baskets through the Celiac Disease Center’s signature program, Gluten-Free Care Packages. Dr. Guandalini is quite optimistic about recent research findings and took time to share his insights about the future of celiac disease with Delight Gluten-Free Magazine.

DGF: The Celiac Disease Center at the University of Chicago is very active in terms of researching the condition and raising awareness about it within the general population. Can you tell us about your annual free celiac disease blood-screening program, including who is qualified to participate in it?

SG: Our first celiac screening event was held in 2001, so our center has hosted it for ten years now. We had about 150 participants the first year; we’ve operated at full capacity for the last few years, testing 500 people. In addition to performing free blood tests for celiac disease, we hold a Q&A session for participants. People are eager to ask questions about celiac disease, so each year we include specialists from our center as well as experts that deal with celiac in other disciplines such as dermatology and dietetics on the Q&A panel. We find that many people sign up for our event because their own doctors would not test them for celiac disease because they do not have classic symptoms of the condition.

When we started this program, our goal was to increase the diagnosis rates of celiac disease, and each year, approximately 6% of the people who are tested at our screenings are found to have the condition. For practical reasons, the screening event is not open to the general population but to those who have good reason to be tested for celiac disease. This includes people with symptoms as well as those with no symptoms but who are related to others who do have the genetic condition.

DGF: Is it true that at least one first-degree relative of many celiac patients are diagnosed with the disease within a few years of the celiac’s own diagnosis?

SG: It’s important for first-degree relative of patients with celiac disease to also be tested for the condition, since it’s genetic. It’s important also to note that the number of years before another family member might be diagnosed (if any are) varies for each family, and that a negative test for celiac does not clear that family member for a lifetime. First-degree relatives should therefore be retested every three to four years, because the condition can present at any time throughout one’s life. This holds true for people with or without celiac symptoms, since some patients are asymptomatic. The exception to the rule would be if family members have the genetic test for celiac and don’t have any celiac genes. That means they will likely never develop celiac disease, but it does not rule out gluten intolerance, which is a different problem for which there is presently no suitable diagnostic test.

DGF: There seems to be some contradictory information about when it’s best for mothers with celiac disease to introduce gluten-containing grains to their infant children. Is it possible that introducing these foods at certain times in their development could help prevent the child from developing celiac disease later in life?

SG: There is a lot of interest in this subject; currently there are three important studies going on about it. Two of them are in Europe, one in the United States. So far, the answer is still a moving target, but we do know a few things based on preliminary findings. It appears that introducing gluten into the diet at three to four months of age greatly increases the risks of the child’s developing celiac disease later in life. Waiting until the infant is five to six months old to introduce small amounts of gluten, during which time the child continues to be breast-fed, might prevent the child from developing the condition later in life. If the child does eventually develop celiac disease, the onset of the condition might at least be delayed if gluten is introduced at five to six months of age rather than earlier.

DGF: Earlier this year, research at your center discovered something very interesting regarding retinoic acid and IL-15 in relation to reactions in celiac disease patients. Can you elaborate on this new finding and why it’s such a significant piece of information for better understanding the condition?

SG: Our study showed that retinoic acid—in the presence of IL-15—has properties that induce intestinal inflammation in celiac patients. Due to these findings, caution is called for regarding the use of vitamin A and retinoic acid for the treatment of autoimmunity and inflammatory intestinal disorders associated with high levels of IL-15. For example, treating acne with a product like Accutane, which is high in vitamin A, might not be the best course of action in patients with these particular inflammatory reactions. Also, they might need to limit their intake of foods such as carrots which are high in vitamin A. This new information about retinoic acid and IL-15 in regard to celiac disease gives us new insight into further understanding and possibly treating the condition.

DGF: There is a new study out of Italy showing that baked goods made with fully hydrolyzed wheat flour might be safe for people with celiac disease. The study was quite small but did show promise, since the group of subjects who ate food made with fully hydrolyzed wheat flour foods showed no outward symptoms. Also, their blood work was normal, and their biopsies showed no changes to the intestinal lining at the end of the 60-day trial. Do you think this area of research is worth exploring to see if the results can be repeated in a larger study?

SG: Yes—trying to duplicate the findings in a larger-scale study is important work. Even though the study included only a small number of patients, it was well done and the findings are reputable. The researchers involved have been working on the feasibility of producing non-toxic wheat for an extensive amount of time. It’s certainly possible that non-toxic wheat, which would be safe for people with celiac to consume, might be a reality eventually. However, people with celiac disease currently have many available options in terms of ready-made gluten-free breads and other baked goods. It’s likely that a non-toxic wheat-based product line would come with the higher costs associated with items already on the market. In other words, people would still need to seek out specialty items and pay more for them, just as they do now.

DGF: There is a lot of talk now about a vaccine for celiac disease. What are your thoughts on the subject, and when might we see a vaccine become available?

SG: There is a lot of promising work being conducted currently in that area. The vaccine trial in Australia is in phase 3 and I think a vaccine for celiac disease is definitely on the horizon. Only time will tell when it would be widely available, but I’d estimate we are looking at 10-12 years or so.