<<Disclaimer: Verify this information before applying it to your situation.>> The following is a report from the international Coeliac Symposium currently being held at Tampere, Finland. This event occurs once every 4 years, and is the most important gathering of researchers in our field. We are very fortunate to have two volunteers as our reporters: Dr. Joseph Murray from the Celiac clinic at the University of Iowa, who is attending the conference and calling in his reports, and Ann Whelan, who is transcribing, summarizing and editing them. Many of you know Ann Whelan as the editor of the GLUTEN-FREE LIVING newsletter. This is an excellent printed newsletter which covers important topics at a level of detail which is difficult to do on a listserv just as ours. It is also an excellent product to give to medical professionals to assist them in keeping up with this field. It is well researched, and includes quotes and/or articles by many well-respected clinicans and researchers in the Celiac field. One year of 6 issues is $29, two years is $49. International orders are $5 extra. A sample issue is $5.95. Four issues have been published so far, the fifth is about to appear). Order from Gluten-Free Living, P.O. Box 105, Hastings-on-Hudson, NY 10706. Ann plans on covering a few selected topics from the Tampere symposium in greater detail (and with additional sources) in future issues. Bill Elkus for the Listowners ---------Ann Whelan / Joe Murray report #1 follows------------- THE DAILY REPORT Hi, everybody. Although I am not currently on the Internet, I am pleased to be involved in this effort to get the word out as quickly as possible. After listening to Joe Murray talk about the conference, I can tell you that I'd love to be there -- as I'm sure most of us would prefer. Joe says he didn't take a head count in the hall, but it's packed and just about everyone who is anyone in the celiac community -- with very few exceptions -- is in attendance. Today's rundown is pretty descriptive. Time permitting tomorrow I will try to get a bit more depth. But I think in the following information, you'll find plenty of interesting developments. So, here we go... The first speaker, Dr. Jarmo Visakorpi, from Finland, gave an overview of CD and how it started out being thought of as a rare gi disease of children and not a common disease that occurs at all ages and may not be limited to the gi tract. Joe remembered one quote that he felt would be well worth repeating -- and you'll see why. Dr. Visakorpi said: "Many people call parts of the celiac iceberg by different names, but that's not important. It's more important to know the size of the iceberg and how it floats...In Sweden, the whole iceberg is floating. In other European countries, the tips of the iceberg are showing. But in the United States, the whole iceberg is submerged." Wow! I'd call that a great image... Dr. Luigi Greco, from Italy, spoke next. He talked about origins of cultivation and how wheat was the first cultivated plant, at least in the middle east. The cultivation of wheat allowed people to change from being nomads to being settled. The next big occurrence relative to cultivation was that people discovered they could ferment wheat and make beer! Dr. Greco went on to comment that in the western part of Europe, exposure to gluten has only occurred very recently in genetic terms, with little time having elapsed for the population to adapt genetically! Dr. Greco also commented on the perceived differences in incidence rates that we see quoted and suggested that these differences may be actually due to the different ages of onset in different populations and there really is little difference statistically between different measures --1 250 and 1 in 500, for example. Dr. Henry Asher from Sweden spoke next. He discussed the Swedish experience, which has shown an increased incidence among children that is different from other countries. Dr. Asher made several observations about the gluten content of commercial foods, which has gone up dramatically since cow's milk protein has been eliminated from formulas and replaced with gluten-containing material. He says the amount of gluten given to young children is correlated with the onset of symptomatic disease. He looked at gluten consumption in children: It's highest in Italy, next highest in Sweden, next is Finland and the next is Denmark and these levels of gluten consumption parallel the rise in symptomatic cd in children. Dr. Asher went on to observe that the diagnosis of cd is related to a shorter duration of breastfeeding, the earlier introduction of solid foods and a higher amount of gluten in the diet. He showed news clippings from Sweden, including one that said the Justice Minister in Sweden has a daughter who has cd and the minister has called for an outright ban on gluten-containing baby food! Not surprisingly, Joe says there was a lot of comment on this question. Some suggested the need to look for other factors for the change in childhood incidence. Also, if the amount of gluten given to children is reduced, they may develop not symptomatic CD but silent or delayed CD. Joe says it's too soon to decide what can be done with childhood dietary content, but that it seems reasonable to prolong breastfeeding and to reduce the amount of gluten in the child's diet. Dr. Carlo Catassi, from Italy, spoke about screening. He used a quote (not his own) that said screening should only be undertaken if there's a risk of complications and we can alter the natural history of the disease in a significant proportion of those screened. Dr. Catassi claims in Italy, CD is one of the commonest lifelong disorders. He suggested that for every one diagnosed CD individual in Italy, there may be 7 others who have asymptomatic disease. In Italy, they screened 17,501 students and came up with a high incidence. Dr. Martin Stern spoke about the standardization of screening tests. Joe said his talk was very technical about standardization (not screening) in Europe. One important point that he made of interest to laypeople is that these tests can either be set as screening tests or as diagnostic tests but not both at the same time. What makes a good screening test does not make a good diagnostic test. Dr. Stern said the normal cutoff point needs to be adjusted for whichever aim you have. Dr. Pekka Collin, from Finland, spoke about diagnostic strategy and how to find CD. He did it on the basis of several things: actively screening high risk groups, including first-degree relatives, and those with insulin dependent diabetes mellitus, rheumatologic problems, especially sjogrens syndrome, problems of infertility, thyroid disease, and neurologic disease. The second thing he does is have a service where he gives open access endoscopy to primary care doctors who refer patients for endoscopy. Third, is to biopsy the duodenum of all patients who are endoscoped. Dr. Collin went on to remark that the incidence of DH, which is an obvious condition, has been stable and unchanging over the years but the diagnosis of CD is increasing dramatically. Next were several short oral presentations not listed in the program. First, Dr. Ivarsson and colleagues from Sweden talked about different factors leading to cd in children. They mentioned the quantity of gluten, a shorter duration of breastfeeding and, interestingly Joe says, the socioeconomic status of those diagnosed. The lower the socioeconomic status, the greater the risk. Additionally, he found that those born in the summertime! have a greater risk and, of course, those genetically predisposed. Second, Dr. Hovdenak and his colleagues from Norway talked about blood donor screening. Joe said he thinks it's very interesting that he found a high incidence, 1 in 200, but did not find any difference in sex. Joe says that's different from symptomatic CD, which is predominately female. Third, Dr. Kaukinen from Finland looked at CD in patients who had positive antibody tests and normal architecture in the intestine. They show that many of these patients have some subtle changes in the intestine, but he's not sure yet what it means. (NOTE: The previous seems contradictory to me. I'll try to clarify tomorrow. Fourth, Dr. Bahedi from France talked about his findings that showed that only 43 percent of adult patients adhere to the GF diet. This was detected by biopsy and endomysial antibodies. He emphasized that when the antibodies are positive, patients are told they are not compliant, but if the antibodies are negative, it's not necessarily saying everything is okay. (NOTE: I'll see what else I can find out here tomorrow.) The next scheduled speaker, Dr. Anne Ferguson from the U.K., said that some people just eat a naturally low-gluten diet and that aspect needs to be considered when assessing for CD. She also talked about the latent forms of CD. Dr. Auricchio from Italy talked about patients who have symptoms due to gluten, but with normal biopsies. These people seem to have many differences from celiac patients. Dr. Auricchio suggested there may be different genes that determine sensitivity to gluten on one hand and the development of small bowel problems on the other. Dr. Lionel Fry from the U.K. talked about DH. He stated that all patients with DH have some degree of enteropathy, even though less than 1 in 10 patients with DH have GI symptoms. Dr. Fry also said 40 percent of DH relatives have gluten-sensitive enteropathy. He went on to say that the GF diet can take 6 months to two years to get healing of DH, and a relapse of the DH rash may take 2 to 12 weeks to occur after someone eats gluten. Total disappearance of IGA skin deposits may take up to 7 years after a GF diet is started. Dr. Reunala from Finland talked about associated diseases. He quoted others who said 5 to 14 percent of DH patients have thyroid disease and went on to say that DH patients have an increased incidence of lymphoma but a gf diet seems to protect against lymphoma. Dr. Holmes from the U.K. talked about malignancy in CD. He quoted that the is risk is between 0 and 7 percent, while in general it's 3 to 11 percent and this is reduced by being on a GF diet. Dr. Carazza from Italy talked about other conditions like refractory disease, hyposplenism, and something else, but there are no notes. Then there was a forum. Dr. Hallert talked about psychiatric illness in adult CD patients. He studied 180 CD patients and found that 22 percent had been to the psychiatric department prior to diagnosis of cd and the average time from going to the psychiatric department to the eventual diagnosis of CD was 14 years! (NOTE: I think I've got that right but think I should verify the figure tomorrow.) Dr. Hallert also said celiacs were four times as likely to be seen in the psychiatric department as the general population! He also went on to say that depression may occur after the CD diagnosis. Dr. Ventura from Italy talked about autoimmune disorders. He suggested it's more common in patients diagnosed later in life than those diagnosed in early childhood. Next, Dr. Murray himself presented information about seven patients who have duodenal strictures as a previously undescribed presentation/complication of CD. I'll see if I can get more information tomorrow, or perhaps it can wait until he returns. Dr. Bai, (sorry, don't know from where) described effects of the GF diet on bone density. Patients showed marked improvement in bone density with the GF diet, although it did not return to normal. The improvement was better in the spine than in the hip and better in the hip than elsewhere. Dr. Bai went on to say that premenopausal women did better than postmenopausal women. And that's it for today. I'll try to ask Dr. Murray more questions tomorrow, when he says the presentation might be much more technical. We were on the phone for a very long time just relaying the previous notes, which certainly provide a great deal of gluten-free food for thought! Talk to you tomorrow!