Q&A with Fulbright Scholar and Celiac Researcher Dr. Jonas Ludvigsson
You may recognize Dr. Jonas Ludvigsson from NFCA’s Research News. A renowned researcher in the celiac disease field, Dr. Ludvigsson has co-authored some of the most cutting edge studies on this topic.
Currently, Dr. Ludvigsson is on a Fulbright Scholarship at the Mayo Clinic in Rochester, MN. NFCA Healthcare Relations Manager Kristin Voorhees asked him a few questions about his impressions of celiac disease research in the U.S. compared to his home country, Sweden.
NFCA: How is Swedish celiac disease research different from U.S. celiac research?
Dr. Ludvigsson: Several things are different. The awareness of celiac disease is very high in Sweden (together with Finland, we have perhaps the highest awareness in the world). This means that patients are likely to be diagnosed at an earlier stage, since general practitioners test frequently for celiac disease. Hence, a larger proportion of the Swedish celiac community has been diagnosed (compared to the U.S. population).
Another big difference, however, is the existence of the personal identity number (or National identification number).
This number is assigned to all Swedish residents and is unique for each individual. This means that we can trace every individual’s health for the last 30-40 years, and often longer. It also means that people are not “lost” from research, and that we can study thousands, sometimes millions of patients at the same time. For instance, I carried out a study on the risk of preterm birth in children born to mothers with celiac disease where we could compare the risk of preterm birth in 2,000 mothers with celiac disease, to the risk of preterm birth in 2.8 million Swedish women without celiac disease.
Through the personal identity number I have been able to identify about 29,000 patients with celiac disease in Sweden, and we now compare them with almost 150,000 individuals without celiac disease. This has allowed us to calculate the risk of death and cancer in patients with celiac disease. Celiac disease, even in those with a diagnosis, increases the risk of death, but the risk increase is very small. In 1,000 individuals without celiac disease, 7 will die in the next year (0.7%), while in 1,000 celiac patients, 10 (1%) will die next year. 10 is more than 7, but still the risk increases are very small.
NFCA: How can we improve celiac disease awareness in the U.S.?
Dr. Ludvigsson: I think the general awareness of celiac disease is increasing in the U.S.; to a large extent due to the high quality research done in this field in the US, both clinical research and experimental research. If there is one thing that I believe could help American research (and indeed research all over the world) it would be to agree on the definitions of celiac disease and related disorders such as non-celiac gluten sensitivity. Our latest paper was a collaboration between researchers in America and elsewhere, and we feel this could be the beginning of even more international collaborations. (Read more about this paper on celiac disease terminology.). Another thing could be to establish collaboration between celiac centers and share experiences. I also think that the work of the NFCA is great – being present at meetings, on the Internet, on Facebook, etc.
NFCA: Where do you think celiac disease research is headed?
Dr. Ludvigsson: I think there are three areas where progress is really needed:
1) Is undiagnosed celiac disease dangerous? And if it is, how dangerous is it, and in what regards?
2) How important is the dietary treatment? I think it is important, but it will not prevent all complications and associated disorders.
3) What is non-celiac gluten sensitivity? Is that dangerous to the individual?
Do you agree with Dr. Ludvigsson’s three points? How do you think the U.S. can improve celiac disease diagnosis?