impact FALL 2010 A Sensitive Subject: Update on our Current Understanding of Gluten Sensitivity Sonia S. Kupfer, MD “Gluten gives me diarrhea and bloating but my doctor tested me for celiac disease and I am negative. Do I have gluten sensitivity?” This is a common question we hear in the Celiac Center, and one that can be difficult to answer. The problem lies in the fact that we don’t have DXQLYHUVDOO\DFFHSWHGGH¿QLWLRQRIJOXWHQ VHQVLWLYLW\DOVRFDOOHGJOXWHQLQWROHUDQFH Moreover, there is overlap with celiac disease DQGLUULWDEOHERZHOV\QGURPH$VVXFKJOXWHQ VHQVLWLYLW\¿QGVLWVHOILQZKDW'U(OHQD9HUGX DQGFROOHDJXHVUHFHQWO\FDOOHGD³QRPDQ¶V ODQG´)LJXUH1HYHUWKHOHVVHPHUJLQJ GDWDLVKHOSLQJXVWRXQGHUVWDQGWKHVSHFWUXP RIJOXWHQVHQVLWLYLW\WKDWHYHQWXDOO\ZLOODOORZ XVWREHWWHUGH¿QHGLDJQRVHDQGWUHDWWKH FRQGLWLRQ ,QWKHEURDGHVWVHQVHJOXWHQVHQVLWLYLW\FDQ EHWKRXJKWRIDVDGLVRUGHUWKDWUHVSRQGVWR H[FOXVLRQRIJOXWHQIURPWKHGLHW³'LVRUGHU´ KHUHFDQEHGH¿QHGE\FOLQLFDOV\PSWRPV DEQRUPDOFKDQJHVLQVPDOOERZHORUEORRGDQG or altered immune response when exposed to JOXWHQ7KHFOLQLFDOV\PSWRPVFDQUDQJHIURP JDVWURLQWHVWLQDOV\PSWRPVWRQHXURORJLFDO FRQGLWLRQVDPRQJRWKHUV,QJOXWHQVHQVLWLYLW\ WKHUHFDQDOVREH³QRQVSHFL¿F´EORRGWHVWVWKDW GRQRWPHHWVWULFWFULWHULDIRUFHOLDFGLVHDVH )LQDOO\WKHUHLVFRQWURYHUV\ZKHWKHUJHQHWLF VXVFHSWLELOLW\HLWKHU+/$'4RU'4LV UHTXLUHGIRUJOXWHQVHQVLWLYLW\ :LWKUHJDUGWRJDVWURLQWHVWLQDOV\PSWRPV such as chronic diarrhea and abdominal EORDWLQJRQHVWXG\IRXQGWKDWJHQHWLF VXVFHSWLELOLW\DQGEORRGWHVWVPLJKWSUHGLFW UHVSRQVHWRDJOXWHQIUHHGLHWLQSDWLHQWVZLWK GLDUUKHDSUHGRPLQDQWLUULWDEOHERZHOV\QGURPH in whom celiac disease has been excluded :LWKUHJDUGWRQHXURORJLFDOSUHVHQWDWLRQRI JOXWHQVHQVLWLYLW\DQXPEHURIVWXGLHVIURP WKH8.KDYHFKDUDFWHUL]HGWKHFOLQLFDO VSHFWUXPDQGGLDJQRVWLFDVZHOODVWKHUDSHXWLF approaches 7KHPRVWZLGHO\GHVFULEHG JOXWHQUHODWHGQHXURORJLFDOFRQGLWLRQVLQFOXGH GLI¿FXOW\PDLQWDLQLQJEDODQFHFDOOHG³JOXWHQ DWD[LD´DQGQXPEQHVVDQGWLQJOLQJLQWKH H[WUHPLWLHVFDOOHGQHXURSDWK\7KHUHLVQHHG for further study of clinical manifestations RIJOXWHQVHQVLWLYLW\WRGHWHUPLQHZKLFK V\PSWRPDWLFSDWLHQWVZRXOGPRVWEHQH¿WIURP JOXWHQIUHHGLHWV ,QUHJDUGWRLPPXQRORJLFDOFKDQJHVLQ JOXWHQVHQVLWLYLW\WZRVWXGLHVVKRZHGWKDW ¿UVWGHJUHHUHODWLYHVRIFHOLDFSDWLHQWVKDYH D³FHOLDFOLNH´LPPXQHUHVSRQVHDIWHUEHLQJ H[SRVHGWRJOXWHQEXWKDGQRIXUWKHUHYLGHQFH of celiac disease 7KHVHVXJJHVWHGWKDWWKHUH Sonia S. Kupfer, MD FDQEHDQDEQRUPDOLPPXQHUHVSRQVHWRJOXWHQ without other features that are classically DVVRFLDWHGZLWKFHOLDFGLVHDVH,QWHUHVWLQJO\ these responses appeared to be independent RIJHQHWLFVXVFHSWLELOLW\)XUWKHUVWXG\LVDOVR UHTXLUHGWREHWWHUGH¿QHWKHLPPXQRORJLFDO UHVSRQVHWRJOXWHQLQLQGLYLGXDOVZLWKJOXWHQ VHQVLWLYLW\ $WWKH8QLYHUVLW\RI&KLFDJR&HOLDF'LVHDVH &HQWHUZHDUHDFWLYHO\ZRUNLQJRQVWXGLHVLQ JOXWHQVHQVLWLYLW\,QFROODERUDWLRQZLWK'U %DQD-DEUL¶VODEZHZLOOEHODXQFKLQJDFOLQLFDO VWXG\WRGHWHUPLQHQRYHOPDUNHUVWRGLVWLQJXLVK FHOLDFGLVHDVHIURPJOXWHQVHQVLWLYLW\ZKLOH SDWLHQWVDUHRQDJOXWHQIUHHGLHW:HKRSH these and other studies will help to further HOXFLGDWHJOXWHQVHQVLWLYLW\DQGWDNHLWRXWRI ³QRPDQ¶VODQG´LQWRDPRUHFOHDUO\GH¿QHG FRQGLWLRQ)RUQRZ,WHOOSDWLHQWVLQZKRP celiac disease has been ruled out that they PD\KDYHJOXWHQVHQVLWLYLW\DQGFDQFRQWLQXH DQXWULWLRXVJOXWHQIUHHGLHWLILWLVKHOSLQJ,W Stefano Guandalini, M.D. Founder and Medical Director University of Chicago Comer Children’s Hospital Section Chief, Pediatric Gastroenterology, Hepatology and Nutrition Advisory Board Wendy Weil, D.P.M., Chairperson Cindy Day Erwin, Vice Chairperson Stuart Gordon, Treasurer Bonnie Sclamberg, Membership Lara Field, M.S., R.D., Secretary Tripti Kasal, Immediate Past Chairperson Lisa Aiken Susan Blumenfeld Carin Foote Jessica Foote Gary Frank Joyce Frank Deborah Gordon Bana Jabri, M.D., Ph.D. Kim Koeller Sonia Kupfer, M.D. Laura J. Lazarczyk Judy Petrungaro Gail Pierce Lori Rowell, MS, RD, LDN Carol Semrad, M.D. Sueson Vess Peggy Wagener Elizabeth Wall, MS, RD, CNSC, LDN Jonathan S. Yaffe, CPA STAFF Carol M. Shilson Executive Director Ronit Rose Program Manager NurAlima Grandison Research Coordinator The University of Chicago Celiac Disease Center is dedicated to raising awareness and diagnosis rates and meeting the critical needs of people affected by celiac disease nationwide through education, research and advocacy. The contents of this newsletter are not intended to diagnose or recommend treatment for celiac disease. Please consult your healthcare provider with questions about your condition. For more information about The University of Chicago Celiac Disease Center, please contact our office: The University of Chicago Celiac Disease Center 5841 S. Maryland Ave., MC 4069 Chicago, IL 60637 Ph.: (773) 702-7593 Fax: (773) 702-0666 info@CeliacDisease.net www.CeliacDisease.net Figure1. Gluten sensitivity falls between irritable bowel syndrome (IBS) and celiac disease (CD). Used by permission of Nature Publishing Group(1) PD\EHD³VHQVLWLYH´VXEMHFWSUHVHQWO\EXWZLWK continued sensible research we’ll be better able WRGLDJQRVHDQGWUHDWRXUSDWLHQWVLQWKHQHDU IXWXUH TXL] +DGMLYDVVLOLRX06DQGHUV'6*UXQHZDOG 5$:RRGURRIH1%RVFROR6$HVFKOLPDQQ '*OXWHQVHQVLWLYLW\IURPJXWWREUDLQ /DQFHW1HXURO REFERENCES: 9HUGX()$UPVWURQJ'0XUUD\-$ Between celiac disease and irritable ERZHOV\QGURPHWKH³QRPDQ¶VODQG´RI JOXWHQVHQVLWLYLW\$P-*DVWURHQWHURO :DKQVFKDIIH86FKXO]NH-'=HLW]0 8OOULFK53UHGLFWRUVRIFOLQLFDOUHVSRQVH WRJOXWHQIUHHGLHWLQSDWLHQWVGLDJQRVHG ZLWKGLDUUKHDSUHGRPLQDQWLUULWDEOHERZHO V\QGURPH&OLQ*DVWURHQWHURO+HSDWRO 7URQFRQH5)UDQ]HVH$0D]]DUHOOD*HW DO*OXWHQVHQVLWLYLW\LQDVXEVHWRIFKLOGUHQ ZLWKLQVXOLQGHSHQGHQWGLDEHWHVPHOOLWXV $P-*DVWURHQWHURO 'H]L51LYHORQL66XJDL(HWDO*OXWHQ VHQVLWLYLW\LQWKHUHFWDOPXFRVDRI¿UVW GHJUHHUHODWLYHVRIFHOLDFGLVHDVHSDWLHQWV $P-*DVWURHQWHURO %/22'6&5((1,1*5(*,675$7,21² :$,7,1*/,6721/< 4$3$1(/$1'9(1'25 (;+,%,76²23(1727+(38%/,& 7KH8QLYHUVLW\RI&KLFDJR&HOLDF'LVHDVH&HQWHUZLOOKROGLWV$QQXDO)UHH&HOLDF'LVHDVH %ORRG6FUHHQLQJRQ2FWREHU:HZLOOVFUHHQLQGLYLGXDOVDWULVNIRUFHOLDFGLVHDVH 5HJLVWUDWLRQIRUWKHVFUHHQLQJLVQRZFORVHG,I\RXZLVKWREHDGGHGWRWKHZDLWLQJOLVWSOHDVH send an email with your contact information to contact@CeliacDisease.net We will contact you LQWKHRUGHU\RXUHPDLOZDVUHFHLYHGLIDVSDFHEHFRPHVDYDLODEOH ,QFRQMXQFWLRQZLWKWKHVFUHHQLQJWKHUHZLOOEHD4XHVWLRQ$QVZHU3DQHOZKHUH\RXFDQ DVN\RXUTXHVWLRQVDERXWFHOLDFGLVHDVHWRRXUSDQHORIH[SHUWVLQFOXGLQJ&HOLDF&HQWHUPHGLFDO GLUHFWRU'U*XDQGDOLQL'U&DURO6HPUDGDQGGLHWLWLDQV%HWK:DOODQG/DUD)LHOG<RXFDQDOVR HQMR\IUHHVDPSOHVDQGLQIRUPDWLRQIURPWKHYHQGRUVZKRH[KLELWDWWKHVFUHHQLQJ3UHUHJLVWUDWLRQ LV127UHTXLUHGWRDWWHQGWKH4$3DQHODQGWKHYHQGRUIDLU$OOWKUHHHYHQWVZLOOWDNHSODFHDW WKH8QLYHUVLW\RI&KLFDJR0HGLFDO&HQWHURQWKHth)ORRURIWKH'XFFKRVRLV&HQWHUIRU$GYDQFHG 0HGLFLQHDW60DU\ODQG$YHQXH :HZLVKWRWKDQNPrometheus HYHQW 2 Laboratories and PhadiaIRUGRQDWLQJWKHODEWHVWVIRUWKLV Celiac Center at the Port Clinton Art Fair )RUWKHVHFRQG\HDULQDURZ7KH\8QLYHUVLW\RI&KLFDJR&HOLDF 'LVHDVH&HQWHUZDVVHOHFWHGWREHWKHRQO\QRWIRUSUR¿WRUJDQL]DWLRQ WRKDYHDWDEOHDWWKH3RUW&OLQWRQ$UW)DLULQ+LJKODQG3DUN,/RQ WKHODVWZHHNHQGLQ$XJXVW+XQGUHGVRISHRSOHVWRSSHGE\RXUWDEOH WRJHWLQIRUPDWLRQVKDUHWKHLUVWRU\DQGOHDUQPRUHDERXWFHOLDF GLVHDVHDQGWKH&HOLDF&HQWHU:HWKDQN$PGXU3URGXFWLRQVIRUWKLV special opportunity, as well as all the volunteers who participated in WKLVHYHQW >> Celiac Center boardmembers Bonnie Sclamberg, Susan Blumenfeld and Gail Pierce braved sweltering weather to promote greater awareness of celiac disease at the Port Clinton Art Fair in August. Bowling and Bocce for Celiac Disease 7KHVHFRQGDQQXDO3LQVWULSHV%RZOLQJDQG%RFFH1LJKWWRRNSODFHLQ-XO\LQ1RUWKEURRN,/DQG ZDVDUHVRXQGLQJVXFFHVV&HOLDF&HQWHUERDUGPHPEHUV'HEELHDQG6WXDUW*RUGRQRUJDQL]HGWKH HYHQWZKLFKUDLVHGDGGLWLRQDOIXQGLQJWRVXSSRUWRXU&HQWHU¶VSURJUDPVDQGUHVHDUFK1HDUO\ SHRSOHDWWHQGHGDQGVLJQHGXSIRUFRPSHWLWLYHJDPHVRIERZOLQJDQGERFFHZLWKWKHLUIULHQGVDQG IDPLO\7KHHYHQWGLGDJUHDWGHDOWRUDLVHDZDUHQHVVRIFHOLDFGLVHDVHDVWKHPDQ\RWKHUSDWURQV RI3LQVWULSHVWKDWHYHQLQJVWRSSHGE\RXULQIRUPDWLRQWDEOHWROHDUQPRUHDERXWWKHGLVHDVHDQG WKH&HOLDF&HQWHU:HZLVKWRWKDQNWKH*RUGRQVIRURUJDQL]LQJWKHHYHQWDVZHOODV&RQIHFWLRQ 'LYD'HHU¿HOGV%DNHU\*OXWHQ)UHH&RRNLH3DVVLRQ/-3RSFRUQ2UJDQLF1HWZRUNLQJ/WG 3LQVWULSHVDQG6XQVHW)RRGVDOORIZKLFKGRQDWHGJOXWHQIUHHJRRGLHVIRU3LQVWULSHVSDUWLHUVWR WDNHKRPH << Dr. Guandalini focuses intently on his bocce game. Help fund the cure: We still need your help to reach our goal. If you‘d like to donate, please contact Carol M. Shilson at (773) 834-0166. $2 MILLION 3 5(6($5&+ :5$383 The Celiac Disease database, created three years ago by Drs. Guandalini, Semrad, and Kahn, along with The University of Chicago Celiac Disease Center, continues to expand. The database, managed by Celiac Center Research Coordinator NurAlima Grandison, has three undergraduate research assistants working on it to input the collected data. We continue to enroll both adult and pediatric patients on an on-going basis. We expect to begin work on data analysis this fall, and we hope to produce several meaningful publications from this work over the next few years. The University of Chicago Celiac Disease Center is also working with other institutions on a study on the role of breastfeeding in the timing of gluten introduction and intestinal microbiome on the development of celiac disease. We are serving as one of the regional directors for this study and are currently coordinating study initiation at the ten sites we are overseeing both in the United States and Canada. Our study on immunological mechanisms of celiac disease is beginning to yield fascinating findings based on Dr. Jabri’s research with human tissue from biopsy tissue collected from patients for this study. A publication regarding the findings is currently under review by a major scientific journal. The Eating Behavior Study mentioned in the Summer 2010 newsletter continues to look for more participants. For more information on this or any of the other studies mentioned above, please contact NurAlima Grandison at (773) 702-3572 or ngrandis@peds.bsd.uchicago.edu Upcoming Events THE UNIVERSITY OF CHICAGO CELIAC DISEASE CENTER HAS LOTS OF EVENTS COMING UP OVER THE NEXT FEW MONTHS. IN ORDER, THEY ARE: October 9, 2010: Annual Celiac Disease Blood Screening and Q &A Panel. (See article on page 2). October 21-24, 2010: The University of Chicago Celiac Disease Center will be participating in The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) annual meeting and postgraduate course this October 21st – 24th in New Orleans, LA. NASPGHAN is the only professional society for pediatric gastroenterologists in North America. The University of Chicago Celiac Disease Center will be featured in the exhibit hall of the conference, and will provide information on our innovative program to the largest gathering of pediatric gastroenterologists, hepatologists, research scientists and physician nutritionists throughout the four-day conference. Care Package Partners 7KH8QLYHUVLW\RI&KLFDJR&HOLDF'LVHDVH &HQWHU¶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ovember 5-8, 2010: The University of Chicago Celiac Disease Center will also be participating in the Annual Food & Nutrition Conference & Expo, the showcase annual meeting for the American Dietetic Association in Boston. This event allows us to meet hundreds of dietitians all over the world. It’s a great opportunity to let them know who we are and that we can be a resource for their newly diagnosed patients, no matter where they live. It also gives us the opportunity to emphasize the importance of the gluten-free diet for diagnosed celiac patients, and to form vitally important relationships and partnerships with companies producing gluten-free food. November 8-12, 2010: We are thrilled to announce that we will be partnering with Wildfire Restaurants for a week of Gluten Free dining to benefit The University of Chicago Celiac Disease Center! Each night of the week (Monday-Friday), a different Chicago-area Wildfire will host a gluten-free dinner. Tickets will cost $75 each, including a $25 to the Celiac Center. The dates and locations are: Monday, Nov. 8: Tuesday, Nov. 9: Wednesday, Nov. 10: Thursday, Nov. 11: Friday, Nov. 12: Chicago Oakbrook Glenview Schaumburg Lincolnshire Enjoy a four-course gourmet feast with wine pairings. Reservations are required. Please call Shannon Ryan at 312-787-9000 for reservations. December 2-3, 2010: The 5th Annual Preceptorship Program in Celiac Disease. We are still accepting applications from physicians of all specialties and dietitians for the 2010 Preceptorship Program. This is a two-day intensive course that includes clinic observation, lecture, Q & A and case presentation with the various experts in celiac disease at the University of Chicago. Bakery on Main Betty Crocker Bhuja Bob’s Red Mill Cabot Creamery Chebe Enjoy Life Foods Green Giant May 6, 2011: The annual Spring Flours™ Event at the Swissôtel in downtown Chicago. As always, a fabulous line-up of Chicago’s finest gourmet gluten-free food, and a fun silent and live auction. Jones Sausage Kettle Cuisine For more information, go to: www.CeliacDisease.net/programs-&-events. L & J Popcorn Lärabars Mary’s Gone Crackers Namaste Nature Valley Pamela’s Peanut Butter & Co. Progresso Protein Plus Peanut Flour Rice Chex San-J Schar Mr. Krispers and Crunchmaster Udi’s +2/,'$<&$5'672 6833257&(/,$&&(17(5 12:$9$,/$%/( Send good wishes for the Holidays and New Year and help raise funds for our Center. Custom greeting cards are now available for purchase at: http://morethancards.com Please click on our logo to make sure a portion of proceeds comes to our Center. Please visit our website for more information at:www.CeliacDisease.net 4
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