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Celiac.com 07/31/2009 - Worldwide, most people with celiac disease remain undiagnosed and untreated, oblivious to their increased risk of mortality, and of developing certain cancers and other celiac-related conditions. Finland has set out to achieve high detection rate by training health personnel, and advocating blood tests for people known to be at risk for developing celiac disease. A team of researchers recently set out to determine whether this approach has been clinically effective in practice. The research team was made up of Lauri J. Virta, Katri Kaukinen & Pekka Collin. Since 2002, Finland's Social Insurance Institution had paid monthly compensation to people with newly diagnosed celiac disease for the additional cost of maintaining a gluten-free diet. To receive this compensation, people must submit proof of diagnosis, including biopsy findings, along with diagnostic criteria, in a statement from a physician. That information is kept in a national database. The researchers used the database to calculate incidence and prevalence rates of celiac disease through 2006. From the database, they selected from a total population aged 16 years or older of 4.31 million, to identify a total of 5020 persons (64% female) who received a new dietary grant in 2004-06. Altogether, 23,553 persons received the dietary grant. Thus, the mean annual incidence of proven celiac disease to be 39 per 100,000 individuals. This puts the national prevalence of adult celiac disease in Finland at 0.55% (0.70% F, 0.38% M). The results varied by region from 33 to 49 per 100,000 in annual incidence, and from 0.41% to 0.72% in the prevalence rates. It seems these figures for proven celiac disease in Finland are the highest yet charted. Nevertheless, many celiac disease cases remain undetected, as the true prevalence in Finnish adults is about 1.5-2.0%. Increased alertness to the condition and active case finding has made this efficient diagnostics possible. Interestingly, people aged 65 to 74 years showed the highest prevalence; in females prevalence peaked at 1.10% (95% Cl: 0.98-1.23) at the age of 68 years and in males, 0.77% (95% CI: 0.67-0.89), also at 68 years. Also, earlier findings have shown that 10-15% of cases will be detected because of atypical symptoms or associated conditions. Scandinavian Journal of Gastroenterology, 2009; 44: 933-938

Markku Maki, M.D., PhD - Pediatric Gastroenterologist Institute of Medical Technology University of Tampere P.O. Box 607 FIN-33101 Tampere, Finland Tel: +358 31 2157724 Fax: +358 31 2157710 E-mail: llmama@uta.fi Homepage: http://www.uta.fi/~llmama/

The Finnish Coeliac Society/Suomen Keliakialiitto ry Hammareninkatu 7 SF-33100 Tampere, Finland Phone:+358 3 2541 300 Fax:+358 3 2541 350 E-mail: info@keliakialiitto.fi Internet: www.keliakialiitto.fi Hameenlinna Group: Hameen Keliakiayhdistys ry Contact: Pj. Jorma Taipalus Janiksenpoiku 32 13600 Hameenlinna Tel: (03) 616 1232 Siht. Erja Kangasvuori Liisanaro 3 13210 Hameenlinna Tel: (03) 674 8979 Imatra Group: Imatran Seudun Keliakiayhdistys ry Contact: Pj. Helena Hallikainen Pajarintie 95 56730 Laikko Tel: (05) 75 765 Siht. Eila Lintunen Irmankatu 3 55120 Imatra Tel: (05) 4322 550 Joensuu Group: Pohjois - Karjalan Keliakiayhdistys ry Contact: Pj. Erkki Vallius Penttilankatu 1 B 9 80220 Joensuu Tel: (013) 137 905 Siht. Mauno Koljonen Ylasatamakatu 30 A 2 80100 Joensuu Tel: (013) 225 709 Jyvaskyla Group: Keski-Suomen Keliakiayhdistys ry Contact: Pj. Pirjo Laine Hirvenkello 14 40520 Jyvaskyla Tel: (014) 641 054 Siht. Sinikka Vihne Lahdepolku 3 40500 Jyvaskyla Tel: (014) 241 003 Kajaani Group: Kainuun Keliakiayhdistys Contact: Pj. Tarja Korvinen Lansitie 15 E 87150 Kajaani Tel: (08) 628 004 Siht. Helvi Paivi Karjakatu 10 88600 Sotkamo Tel: (08) 6662 141 Kemi Group: Lansi-Pohjan Keliakiayhdistys ry Contact: Pj. Sanni Raisanen Hervantie 20 94400 Keminmaa Tel: (016) 270 272 Siht. Anne-Mari Keronen Haapalankatu 5 A 4 94100 Kemi Kemijarvi Group: Koillis-Lapin Keliakiayhdistys ry Contact: Pj. Reino Kunnari Poylionkatu 7 98100 Kemijarvi Tel: (016) 813 516 Siht. Ritva Pajari Riskinniementie 98400 Isokyla Tel: (016) 880 044 Kokkola Group: Kokkolanseudun Keliakiayhdistys ry Contact: Pj. Mauno Sulkala Tyynikatu 3 67100 Kokkola Tel: (06) 831 2915 Siht. Carita Holmberg Pengerkuja 6 67100 Kokkola Tel: (06) 831 1504 Kouvola Group: Pohjois-Kymenlaakson Keliakiayhdistys ry Contact: Pj. Aulikki Volanen Valimontie 16 45100 Kouvola Tel: (05) 3754 369 Siht. Raija Hayha Alankotie 5 45120 Kouvola Tel: (05) 3117 663 Kuopio Group: Pohjois-Savon Keliakiayhdistys ry Contact: Pj. Veikko Jokela Suunnistajantie 1 A 23 70200 Kuopio Tel: (017) 282 5166 Siht. Sisko Hentunen Kielorannankatu 27 70820 Kuopio Tel: (017) 363 2454 Kuusamo Group: Koillismaan Keliakiayhdistys Contact: Pj. Tarja Virkkula Kaakkurilammentie 9 93999 Kuusamo Tel: (08) 8681 154 Siht. Sirpa Vaarala Oravantie 9 A 18 93600 Kuusamo Tel: (08) 8514 903 Lahti Group: Paijat-Hameen Keliakiayhdistys ry Contact: Pj. Jorma Ahonen Uotilankatu 85 B 15840 Lahti Tel: (03) 7535 505 Siht. Seija Saaski Kansakoulunkatu 14 B 5 15700 Lahti Tel: (03) 7823 764 Metsakyla Group: Etela-Kymen Keliakiayhdistys ry Contact: Pj. Eija Aaltonen Hirventie 7 49210 Huutjarvi Tel: (05) 3431 021 Siht. Ritva Anttila Aholankuja 69 49540 Metsakyla Tel: (05) 3458 151 Mikkeli Group: Mikkelin Seudun Keliakiayhdistys ry Contact: Pj. lsto Liukkonen Otavantie 10 50670 Otava Tel: (015) 170 241 Siht. Heli Pyrhonen Sannastinlaakso 6 B 14 50100 Mikkeli Tel: (015) 177 606 Oulu Group: Oulun Seudun Keliakiayhdistys ry Contact: Pj. Vuokko Paaso Manttaalitie 2 C 15 90650 Oulu Tel: (08) 530 3702 Siht. Raili Toivio Kirkkokatu 55 B 15 90120 Oulu Tel: (08) 3113 110 Porvoo Group: Suur-Helsingin Keliakiayhdistys ry Contact: Pj. Hanna Kuntonen Joukahaisentie 9 C 59 06150 Porvoo Tel: (019) 669 241 Siht. Joni Torpo Lyvkkiniemi 13 02160 Espoo Tel: (09) 452 1437 Raahe Group: Raahen Tienoon Keliaakikot ry Contact: Pj. Erkki Sivonen Peiponpoiku 2 92130 Raahe Tel: (08) 221 987 Siht. Riitta Silvennoinen Vilpunlaakso 48 92130 Raahe Tel: (08) 220 787 Rauma Group: Rauman Seudun Keliakiayhdistys ry Contact: Pj. Maija Mattila Paroalhonkatu 6 26660 Rauma Tel: (02) 8251 083 Siht. Raija Uusitorppa Vinkkelinkuja 30 1 C 26660 Rauma Tel: (02) 8250 802 Rovaniemi Group: Rovaniemen Seudun Keliakiayhdistys Contact: Pj. Jorma Lietsalmi Palkisentie 13 as 2 96100 Rovaniemi Tel: (016) 346 152 Siht. Ritva Macklin Perapuistikko 1-3 B 7 96190 Rovaniemi Tel: (016) 395 767 Seinajoki Group: Seinajoen Seudun Keliakiayhdistys ry Contact: Pj. Paula Alanen Jokitie 12 61230 Luopa Tel: (06) 4533 368 Siht. Marjo Kauppi Jyrkkakallionkatu 1 60320 Seinajoki Tel: (06) 4144 871 Tampere Group: Pirkanmaan Keliakiayhdistys ry Contact: Pj. Pekka Collin Pellervonkatu 9, huone 1011 33540 Tampere Varapj. Paavo Leskinen Tel: (03) 3645 719 Siht. Kirsi Makinen Tel: (03) 3481 424 Turku Group: Turun Seudun Keliakiayhdistys ry Contact: Pj. Tarja Kemppi Alikuimantie 362 21450 Tarvasjoki Tel: (02) 848 172 Siht. Pirjo Vienonen Vastarakinkatu 1 A 32 20610 Turku Tel: (02) 2443 380 Vaasa Group: Vaasan Seudun Keliakiayhdistys ry - Vasanejdens Celiakiforening rf Contact: Pj. Leif Lili-Their Korsholmanpuistikko 16 65100 Vaasa Tel: (06) 312 7505 Siht. Birgitta Finne Suopursuntie 8 65280 Vaasa Tel: (06) 321 3637 Yliharma Group: Harman Seudun Keliakiayhdistys ry Contact: Pj. Erkki Kallio Keskirannantie 2 62375 Yliharma Tel: (06) 484 6363 Siht. Taimi Hakomaki Kangastie Kp2 62375 Yliharma Tel: (06) 484 6446

From an oral report by Dr. Murray; transcribed for the list by Ann Whelan, editor of the bi-monthly newsletter Gluten-Free Living. To subscribe, write to P.O. Box 105, Hastings-on-Hudson, NY 10706. Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease: THE DAILY REPORT: The big story today from Finland is oats. There were two talks and several posters presented about the topic. In the first talk, Dr. Risto Julkunen spoke about the Finnish five-year follow-up study in which oats were given to a population of well-controlled celiacs. They ingested an average of 34 grams, which is slightly over one ounce, daily for up to five years. The oats used in the study were specially grown and tested to be free of wheat, barley and rye. The researchers claim there was no difference in those allowed the oats and those who were not. There was a second study presented from Dublin, and reported by Dr. Conleth Feighery. This 12-week study looked at a small group of patients with healed celiac disease to start with, who were given 50 grams of oats a day. Again, the oats were carefully screened and tested to make sure there was no contamination. After 12 weeks, no effect was seen on biopsy or through antibody tests. The researchers also took 2 of the 12 participants and did what they called a micro challenge of 500 milligrams of gluten a day. Both patients got reactions, so the researchers felt that at least two of the participants were sensitive celiacs -- and they still did not respond to the oats. A poster from Italy showed biopsies taken from celiacs that had been studied in the culture plate in the presence of oats, which did show some effect on the biopsies. In other words, tissue from biopsies from patients with treated celiac disease were put in a plate and grown in the presence of oat protein, and the oat protein had an effect on the biopsies. This sounded odd, so I made sure Id really understood what Joe reported and paraphrased: In other words, theyre seeing no reaction from oats within the body in some studies but this one showed a reaction outside the body? Yes, Joe said, this of course is puzzling. Continuing on the oats issue, a series of short studies from several places also showed what the Finns had shown in the body, i.e., no problem in the short term. This is Joes summary on Oats: Over the short term, in well-controlled, healed celiacs who are compliant in every other way, it may be safe for them to take oats that have been tested to be free of contamination of other grains. He also mentioned that there were a few studies showing that contamination of commercial oats may be common in several European countries. (NOTE: I went to Digestive Disease Week in May, where I met several Irish doctors who have studied oats. I would describe their strong beliefs about oats as very adamant. They are adamant in believing that uncontaminated oats are safe for people with Celiac Disease. If all of this oats talk pans out as being acceptably correct to gluten-sensitive individuals in this country, that would seem to be pretty good news. Then, the next big challenge would be to figure out how gluten-sensitive people are going to get access to contamination-free oats. I, for one, will be all ears.).

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 gluten-free 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 gluten-free 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 gluten-free diet seems to protect against lymphoma.