Michelle Melin-Rogovin is the program director of the University of Chicago Celiac Disease Program and a proud representative on the American Celiac Task Force. Ms. Melin-Rogovin has 12 years of experience in health care and patient advocacy, working with children and adults who face a variety of chronic medical conditions.
Visit the University of Chicago Celiac Disease Program's site at: www.CeliacDisease.net
Celiac.com 07/02/2002 (Summary prepared 06/05/2002) - I'm here at the 10th International Celiac Disease Research Conference, in Paris, and three days of intense meetings and reports have just concluded. I didn't want to wait to share with you some of the most interesting and exciting developments in celiac disease--so I'm in a cyber cafe in Paris sending this e-mail.
First of all, many of you know that there are two main types of medical research--work that is done in a laboratory, with test tubes and equipment, and research that is done using human participants, called clinical research. There were many presentations on laboratory research at this meeting, which is a subject that tends to be pretty complicated (for me at least!).
Laboratory Research Presentations:
Many of the presentations on this area of research were focused on answering the following question, so neatly outlined by Dr. Fasano: How do environmental factors (like gluten) reach the immune system (which is primed by genetic predisposition) to cause a response (the development of disease)? The wall of the intestine is designed to prevent this from happening, he said.
There are many theories as to why this occurs. Some theorized that gluten actually penetrates epithelial cells (they are the ones that line the intestine) and come out the other side. Other researchers showed evidence that the bonds between epithelial cells break down and opens a pathway for gluten to enter the intestine. Interestingly, another researcher, Dr. Bana Jabri from Princeton has focused her research on the role of immune killer cells that are activated in celiac disease, and gliadin does not have to be present for them to react and create celiac disease! Several researchers discussed the toxic areas of the gliadin protein, and how they are activated in the presence of immune molecules like IL 15. One interesting but complicated note--in a study of numerous patients (using biopsy samples) all of the intestinal samples recognized different toxic fragments of gluten--meaning that there are dozens of ways that celiac disease can develop at the cellular level.
These researchers are studying the earliest events in the body that may lead to celiac disease. It is hoped that if we can better explain the series of events (like a row of dominos that fall, one at a time) we can develop treatments to stop these events and prevent celiac disease.
Did you know there was more than one kind of tTG (tissue Transglutaminase)?...I didn't! There is an epidermal transglutaminase that is present in dermatitis herpetiformis...this difference may indicate why people with DH are much more sensitive to gluten than those with celiac disease.
Clinical Research and Screening Studies:
Dr. Joe Murray presented a retrospective analysis of the incidence of celiac disease in the county that includes Rochester, Minnesota and the Mayo Clinic. In his analysis, which goes back decades, he found that the average age of diagnosis is 45-64, and the incidence of celiac disease was more common in women by 3 to 1. He found that celiac disease was more common in this county than ulcerative colitis and more common than Type1 diabetes.
Dr. Carlo Catassi, currently in residence at the Center for Celiac Disease Research in Baltimore but native to Italy, presented an overview of the differences between celiacs in the United States and Europe. Some interesting and not surprising information--Europeans are diagnosed younger as adults (34 years of age) when compared to Americans. In Europe, children are diagnosed on average by the age of 4, while many American children are school-age by the time they reach a diagnosis. Surprisingly, Catassi reported that US celiacs tend to have more diarrhea than their European counterparts. Catassi also reported that Europeans have more atypical forms of celiac disease than Americans. He presented the celiac disease screening prevalence figures for the US: 2,121,212 people are projected to have celiac disease in America. There are 140 unknown celiacs for every diagnosed celiac in the US.
Dr. Michele Pietzak, in California, did a prevalence study of at-risk conditions in children and found that 14% of children with iron-deficiency anemia had celiac disease. A group in Salt Lake found that 10% of children with Downs Syndrome had celiac disease, and the Childrens Hospital of Milwaukee found that 7% of children with type 1 diabetes have celiac disease. This is a strong case for screening all children with these conditions.
Speaking in reference to children, Dr. Catassi said that weaning practices in the US and other countries are having a bigger role in the development of celiac disease than previously thought.
Osteopathy: a South American researcher has looked at the issue of fractures in people with silent celiac disease as compared to people with symptomatic celiac disease. He found that people who had symptomatic celiac disease were more likely to suffer fractures than those with silent celiac disease. In all cases, the fractures were less severe in nature.
More confirmation with regard to bone mass deficiency in children-the gluten-free diet alone will repair the deficit, and there is generally no need for other medical interventions.
Another area of research concerned gluten-related ataxia (a complicated condition that I dont fully know how to describe, but includes muscle weakness and confusion). Overall, it was reported that 6-10% of celiac patients may develop neurological problems (of which gluten-related ataxia is only one). This is another case where celiacs with ataxia may produce different antibodies (like in DH) which lead to the development of ataxia. Most importantly, ataxia does not develop as a result of a nutrient deficiency.
There was a great deal of information presented about autoimmune disorders, and I want to make sure I get it right, so Ill summarize that section more in detail (along with other topics) when I return to the office. However, one interesting item related to children with celiac disease and their risk for developing autoimmune disorders was presented: In a study of 74 children diagnosed with celiac disease before the age of 5, Italian researchers found that after 10 years, their risk of developing autoimmune disorders was no greater than that of the general population. Yet another reason for early intervention!
Another important area of research presented was in the area of refractory sprue and the development of lymphomas. Im also going to give this area a bit more thought before I post anything, but I will reassure everyone that the risk of lymphomas is very rare.
One more thing: I apologize for the incompleteness of my e-mail if any researcher or physician finds that I have not best described their work--I'm summarizing my notes after a very long three days of meetings and my brain cells may be a bit dysfunctional. I will clarify any information and send abstracts to anyone who would like them, just send me your snail mail address.