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Celiac Disease & Gluten-Free Diet Blogs

  • kareng's Blog
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  • An Unmistakeable Journey
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  • The Patient Celiac
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  • Trials and Tribulations
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  • learning2cope's Blog
  • Research on South African Celiac Tours
  • lindylynn's Blog
  • Celiaction's Blog
  • shelly184's Blog
  • Melissa.77's Blog
  • Keating's Not-so-Glutenfree life
  • AmandasMommy's Blog
  • Coeliac, or just plain unlucky?
  • bandanamama's Blog
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  • Ellenor Whitty's Blog
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  • Ohmyword's Blog
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  • Scott's Celiac Blog
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  • Gluten Freedom
  • Angie Baker
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  • Shelby
  • Reinhard1's Blog
  • Silly Yak 08's Blog
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  • NotMollyRingwald's Blog
  • Searchin for a Primary Care Dr. In Redlands That is Knowledgeable about Celiac disease
  • num1habsfan's Blog
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  • Celiac-Positive
  • Jason's Mommy's Blog
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  • Lauren Johnson's Celiac Blog
  • I love my plant Cactus <3
  • Chele's Blog
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  • Blues Boulevard
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  • Inspiration
  • Cindy Neshe's Blog
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  • Jema's Blog
  • What I've Learned
  • Da Rant Sheet
  • Michael Fowler's Blog
  • Living in Japan with Ceoliac Disease
  • mkmaren's Blog
  • MJ
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  • x1x_Stargirl_x1x's Blog
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  • Joe pilk
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  • GlutenFreeLexi's Blog
  • drewsant's Blog
  • SadAndSick's Blog
  • HONG KONG GLUTEN, WHEAT FREE PRODUCTS
  • Guth 101's Blog
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  • Gail Marie's Blog
  • Healthy Food Healthy You
  • SydneyT1D - Diabetic and Celiac YouTuber!
  • GFGF's Blog
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  • SMAS: www.celiac.com
  • gardener1's Blog
  • Naezer's Blog
  • JordanBattenSymons' Blog
  • JillianC
  • Sugar's Blog
  • Blanche22's Blog
  • Jason's Blog
  • Gluten-Free Sisters :)
  • Eab12's Celiac Blog
  • ohiodad's Blog
  • Newly Self Diagnosed?
  • misscorpiothing's Blog
  • anshika_0204's Blog
  • Petroguy
  • abqrock's Blog
  • WhoKnew?'s Blog
  • Soap Opera Central
  • nurcan's Blog
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  • Daughter_of_TheLight's Blog
  • nopastanopizza's Blog
  • w8in4dave's Blog
  • Mr J's Blog
  • Rachel Keating's Blog
  • paige_ann246's Blog
  • krisb's Blog
  • deetee's Blog
  • CAC's Blog
  • EmilyLinn7's Blog
  • Teri Kiefer's Blog
  • happyasabeewithceliac's Blog
  • quietmorning01's Blog
  • jaimekochan's Blog
  • Cheryl
  • Seosamh's Blog
  • donna mae's Blog
  • Colleen's blog
  • DawnJ's Blog
  • Gluten Challenge
  • twins2's Blog
  • just trying to feel better's Blog
  • Celiac Teen
  • MNBelle blog
  • Gabe351's Blog
  • moosemalibu's Blog
  • Coeliac Disease or Coeliac Sprue or Non Tropical Sprue
  • karalto's Blog
  • deacon11's Blog
  • Nyxie's Blog
  • Swpocket's Blog
  • threeringfilly's Blog
  • Madison Papers: Living Gluten-Free in a Gluten-Full World
  • babinsky's Blog
  • prettycat's Blog
  • Celiac Diagnosis at Age 24 months in 1939
  • Sandy R's Blog
  • mary m's Blog
  • Jkrupp's Blog
  • Oreo1964's Blog
  • keyboard
  • Louisa's Blog
  • Guts & Brains
  • Gluten Free Betty
  • Jesse'sGirl's Blog
  • NewMom's Blog
  • Connie C.'s Blog
  • garden girl's Blog
  • april anne's Blog
  • 4xmom's Blog
  • benalexander60's Blog
  • missmyrtle's Blog
  • Jersey Shore wheat no more's Blog
  • swezzan's Blog
  • aheartsj's Blog
  • MeltheBrit's Blog
  • glutenfreecosmeticcounter
  • Reasons Why Tummy tuck is considered best to remove unwanted belly fat?
  • alfgarrie's Blog
  • SmidginMama's Blog
  • lws' Blog
  • KMBC2014's Blog
  • Musings and Lessons Learned
  • txwildflower65's Blog
  • Uncertain
  • jess4736's Blog
  • deedo's Blog
  • persistent~Tami's Blog
  • Posterboy's Blog
  • jferguson
  • tiffjake's Blog
  • KCG91's Blog
  • Yolo's Herbs & Other Healing Strategies
  • scrockwell's Blog
  • Sandra45's Blog
  • Theresa Marie's Blog
  • Skylark's Blog
  • JessicaB's Blog
  • Anna'sMommy's Blog
  • Skylark's Oops
  • Jehovah witnesses
  • Celiac in Seattle's Blog
  • March On
  • honeybeez's Blog
  • The Liberated Kitchen, redux
  • onceandagain's Blog
  • JoyfulM's Blog
  • keepingmybabysafe's Blog
  • To beer, with love...
  • nana b's Blog
  • kookooto's Blog
  • SunnyJ's Blog
  • Mia'smommy's Blog
  • Amanda's Blog
  • jldurrani's Blog
  • Why choosing Medical bracelets for women online is the true possible?
  • Carriefaith's Blog
  • acook's Blog
  • REAGS' Blog
  • gfreegirl0125's Blog
  • Gluten Free Recipes - Blog
  • avlocken's Blog
  • Thiamine Thiamine Thiamine
  • wilbragirl's Blog
  • Gluten and Maize-Free (gluten-free-MF)
  • Elimination Diet Challenge
  • DJ 14150
  • mnsny's Blog
  • Linda03's Blog
  • GFinDC's Blog
  • Kim UPST NY's Blog
  • cmc's Blog
  • blog comppergastta1986
  • JesikaBeth's Blog
  • Melissa
  • G-Free's Blog
  • miloandotis' Blog
  • Confessions of a Celiac
  • Know the significance of clean engine oil
  • bobhayes1's Blog
  • Robinbird's Blog
  • skurtz's Blog
  • Olivia's Blog
  • Jazzdncr222's Blog
  • Lemonade's Blog
  • k8k's Blog
  • celiaccoach&triathlete's Blog
  • Gluten Free Goodies
  • cherbourgbakes.blogspot.com
  • snow dogs' Blog
  • Rikki Tikki's Blog
  • lthurman1979's Blog
  • Sprue that :)'s Blog
  • twinkletoes' Blog
  • Ranking the best gluten free pizzas
  • Gluten Free Product
  • Wildcat Golfer's Blog
  • Becci's Blog
  • sillyker0nian's Blog
  • txplowgirl's Blog
  • Gluten Free Bread Blog
  • babygoose78's Blog
  • G-freegal12's Blog
  • kelcat's Blog
  • Heavy duty 0verhead crane
  • beckyk's Blog
  • pchick's Blog
  • NOT-IN-2gluten's Blog
  • PeachPie's Blog
  • Johny
  • Breezy32600's Blog
  • Edgymama's Gluten Free Journey
  • Geoff
  • audra's Blog
  • mfrklr's Blog
  • 2 chicks
  • I Need Help With Bread
  • the strong one has returned!
  • sabrina_B_Celiac's Blog
  • Gluten Free Pioneer's Blog
  • Theanine.
  • The Search of Hay
  • Vanessa
  • racecar16's Blog
  • JCH13's Blog
  • b&kmom's Blog
  • Gluten Free Foodies
  • NanaRobin's Blog
  • mdrumr8030's Blog
  • Sharon LaCouture's Blog
  • Zinc, Magnesium, and Selenium
  • sao155's Blog
  • Tabasco's Blog
  • Amanda Smith
  • mmc's Blog
  • xphile1121's Blog
  • golden exch
  • kerrih's Blog
  • jleb's Blog
  • RUGR8FUL's Blog
  • Brynja's Grain Free Kitchen
  • schneides123's Blog
  • Greenville, SC Gluten-Free Blog
  • ramiaha's Blog
  • Kathy P's Blogs
  • rock on!'s Blog
  • Carri Ninja's Blog
  • jerseygirl221's Blog
  • Pkhaselton's Blog
  • Hyperceliac Blog
  • abbiekir's Blog
  • Lasister's Thoughts
  • bashalove's Blog
  • Steph1's Blog
  • Etboces
  • Rantings of Tiffany
  • GlutenWrangler's Blog
  • kalie's Blog
  • Mommy Of A Gluten Free Child
  • ready2go's Blog
  • Maureen
  • Floridian's Blog
  • Bobbie41972's Blog
  • Everyday Victories
  • Intolerance issue? Helpppp!
  • Feisty
  • In the Beginning...
  • Cheri46's Blog
  • Acne after going gluten free
  • sissSTL's Blog
  • Elizabeth19's Blog
  • LindseyR's Blog
  • sue wiesbrook's Blog
  • I'm Hungry's Blog
  • badcasper's Blog
  • M L Graham's Blog
  • Wolicki's Blog
  • katiesalmons' Blog
  • CBC and celiac
  • Kaycee's Blog
  • wheatisbad's Blog
  • beamishmom's Blog
  • Celiac Ninja's Blog
  • scarlett54's Blog
  • GloriaZ's Blog
  • Holly F's Blog
  • Jackie's Blog
  • lbradley's Blog
  • TheSandWitch's Blog
  • Ginger Sturm's Blog
  • The Struggle is Real
  • whataboutmary's Blog
  • JABBER's Blog
  • morningstar38's Blog
  • Musings of a Celiac
  • Celiacchef's Blog
  • healthygirl's Blog
  • allybaby's Blog
  • MGrinter's Blog
  • LookingforAnswers15's Blog
  • Lis
  • Alilbratty's Blog
  • 3sisters' Blog
  • MGrinter's Blog
  • Amanda
  • felise's Blog
  • rochesterlynn's Blog
  • mle_ii's Blog
  • GlamourGetaways' Blog
  • greendog's Blog
  • Tabz's Blog
  • Smiller's Blog
  • my vent
  • newby to celiac?'s Blog
  • siren's Blog
  • myraljo's Blog
  • Relieved and confused
  • carb bingeing
  • scottish's Blog
  • maggiemay832's Blog
  • Cristina Barbara
  • ~~~AnnaBelle~~~'s Blog
  • nikky's Blog
  • Suzy-Q's Blog
  • mfarrell's Blog
  • Kat-Kat's Blog
  • Kelcie's Blog
  • cyoshimit's Blog
  • pasqualeb's Blog
  • My girlfriend has celiacs and she refuses to see a doctor
  • Ki-Ki29's Blog
  • mailmanrol's Blog
  • Sal Gal
  • WildBillCODY's Blog
  • Ann Messenger
  • aprilz's Blog
  • the gluten-free guy
  • gluten-free-wifey's Blog
  • Lynda MEADOWS's Blog
  • mellajane's Blog
  • Jaded's Celiac adventures in a non-celiac world.
  • booboobelly18's Blog
  • Dope show
  • Classic Celiac Blog
  • Keishalei's Blog
  • Bada
  • Sherry's blurbs
  • addict697's Blog
  • MIchael530btr's Blog
  • Shawn C
  • antono's Blog
  • Undiagnosed
  • little_d's Blog
  • Gluten, dairy, pineapple
  • The Fat (Celiac) Lady Sings
  • Periomike
  • Sue Mc's Blog
  • BloatusMaximus' Blog
  • It's just one cookie!
  • Kimmy
  • jacobsmom44's Blog
  • mjhere's Blog
  • tlipasek's Blog
  • You're Prescribing Me WHAT!?!
  • Kimmy
  • nybbles's Blog
  • Karla T.'s Blog
  • Young and dealing with celiacs
  • Celiac.com Podcast Edition
  • LCcrisp's Blog
  • ghfphd's allergy blog
  • https://www.bendglutenfree.com/
  • Costume's and GF Life
  • mjhere69's Blog
  • dedeadge's Blog
  • CeliacChoplin
  • Ravenworks' Blog
  • ahubbard83's Blog
  • celiac<3'sme!'s Blog
  • William Parsons
  • Gluten Free Breeze (formerly Brendygirl) Blog
  • Ivanna44's Blog
  • Daily Life and Compromising
  • Vonnie Mostat
  • Aly'smom's Blog
  • ar8's Blog
  • farid's Blog
  • Sandra Lee's Blog
  • Demertitis hepaformis no Celac
  • Vonnie Mostat, R.N.
  • beetle's Blog
  • Sandra Lee's Blog
  • carlyng4's Blog
  • totalallergyman's Blog
  • Kim
  • Vhips
  • twinsmom's Blog
  • Newbyliz's Blog
  • collgwg's Blog
  • Living in the Gluten Free World
  • lisajs38's Blog
  • Mary07's Blog
  • Treg immune celsl, short chain fatty acids, gut bacteria etc.
  • questions
  • A Blog by Yvonne (Vonnie) Mostat, RN
  • ROBIN
  • covsooze's Blog
  • HeartMagic's Blog
  • electromobileplace's Blog
  • Adventures of a Gluten Free Mom
  • Fiona S
  • bluff wallace's Blog
  • sweetbroadway's Blog
  • happybingf's Blog
  • Carla
  • jaru24's Blog
  • AngelaMH's Blog
  • collgwg's Blog
  • blueangel68's Blog
  • SimplyGF Blog
  • Jim L Christie
  • Debbie65's Blog
  • Alcohol, jaundice, and celiac
  • kmh6leh's Blog
  • Gluten Free Mastery
  • james
  • danandbetty1's Blog
  • Feline's Blog
  • Linda Atkinson
  • Auntie Lur: The Blog of a Young Girl
  • KathyNapoleone's Blog
  • Gluten Free and Specialty Diet Recipes
  • Why are people ignoring Celiac Disease, and not understanding how serious it actually is?
  • miasuziegirl's Blog
  • KikiUSA's Blog
  • Amyy's Blog
  • Pete Dixon
  • abigail's Blog
  • CHA's Blog
  • Eczema or Celiac Mom?'s Blog
  • Thoughts
  • International Conference on Gastroenterology
  • Deedle's Blog
  • krackers' Blog
  • cliniclfortin's Blog
  • Mike Menkes' Blog
  • Juanita's Blog
  • BARB OTTUM
  • holman's Blog
  • It's EVERYWHERE!
  • life's Blog
  • writer ann's Blog
  • Ally7's Blog
  • Gluten Busters: Gluten-Free Product Alerts by Celiac.com
  • K Espinoza
  • klc's Blog
  • Pizza&beer's Blog
  • CDiseaseMom's Blog
  • sidinator's Blog
  • Dr Rodney Ford's Blog
  • How and where is it safe to buy cryptocurrency?
  • lucedith's Blog
  • Random Thoughts
  • Kate
  • twin#1's Blog
  • myadrienne's Blog
  • Nampa-Boise Idaho
  • Ursa Major's Blog
  • bakingbarb's Blog
  • Does Celiac Cause Sensitivites To Rx's?
  • delana6303's Blog
  • psychologygrl25's Blog
  • Alcohol and Celiac Disease
  • How do we get it???
  • cooliactic_BOOM's Blog
  • GREAT GF eating in Toronto
  • Gluten-free Food Recommendations!
  • YAY! READ THIS!!
  • BROW-FREE DIET BLOG
  • carib168's Blog
  • A Healing Kitchen
  • Shawn s
  • AZ Gal's Blog
  • mom1's Blog
  • The Beginning - The Diagnosis
  • PeweeValleyKY's Blog
  • solange's Blog
  • Cate K's Blog
  • Layered Vegetable Baked Pasta (gluten-free Vegetarian Lasagna)
  • Gluten Free Teen by Ava
  • mtdawber's Blog
  • sweeet_pea's Blog
  • DCE's Blog
  • Infertility and Celiac Disease
  • What to do in the Mekong Delta in 1 Day?
  • glutenfreenew's Blog
  • Living in the Garden of Eden
  • toddzgrrl02's Blog
  • redface's Blog
  • Gluten Free High Protein
  • Ari
  • Great Harvest Chattanooga's Blog
  • CeliBelli's Blog
  • Aboluk's Blog
  • redface's Blog
  • Being in Control of Your Gluten-Free Diet on a Cruise Ship
  • jayshunee's Blog
  • lilactorgirl's Blog
  • Yummy or Yucky Gluten-Free Foods
  • Electra's Blog
  • Cocerned husband's Blog
  • lilactorgirl's Blog
  • A Little History - My Celiac Disease Diagnosis
  • How to line my stomach
  • sewfunky's Blog
  • Oscar's Blog
  • Chey's Blog
  • The Fun of Gluten-free Breastfeeding
  • Dawnie's Blog
  • Sneaky gluten free goodness!
  • Chicago cubs shirts- A perfect way of showing love towards the baseball team!
  • Granny Garbonzo's Blog
  • GFzinks09's Blog
  • How do I get the Celiac.com podcast on my mp3 player?
  • quantumsugar's Blog
  • Littlebit's Blog
  • Kimberly's Blog
  • Dayz's Blog
  • Swimming Breadcrumbs and Other Issues
  • Helen Burdass
  • celiacsupportnancy's Blog
  • Life of an Aggie Celiac
  • kyleandjra.jacobson's Blog
  • Hey! I'm Not "Allergic" to Wheat!
  • FoOdFaNaTic's Blog
  • Wendy Cohan, RN's Gluten-Free and Dairy-Free Cooking Classes
  • Lora Derry
  • Dr. Joel Goldman's Blog
  • The Ultimate Irony
  • Lora Derry
  • ACK514's Blog
  • katinagj's Blog
  • What Goes On, Goes In (Gluten in Skin Care Products)
  • What’s new in hydraulic fittings?
  • cannona3's Blog
  • citykatmm's Blog
  • Adventures in Gluten-Free Toddling
  • tahenderson67's Blog
  • The Dinner Party Drama—Two Guidelines to Assure a Pleasant Gluten-Free Experience
  • What’s new in hydraulic fittings?
  • sparkybear's Blog
  • justbikeit77's Blog
  • To "App" or Not to "App": The Use of Gluten Free Product List Computer Applications
  • Onangwatgo
  • Raine's Blog
  • lalla's Blog
  • To die for Cookie Crumb Gluten-Free Pie Crust
  • DeeTee33's Blog
  • http://glutenfreegroove.com/blog/
  • David2055's Blog
  • Gluten-Free at the Fancy Food Show in San Francisco
  • Kup wysokiej jakości paszporty, prawa jazdy, dowody osobiste
  • Janie's Blog
  • Managing Hives & Gluten Allergies
  • Bogaert's Blog
  • Janie's Blog
  • RaeD's Blog
  • Dizzying Disclaimers!
  • Dream Catcher's Blog
  • PinkZebra's Blog
  • Hibachi Food and Hidden Gluten Hazards (How to Celebrate Gluten-Free)
  • jktenner's Blog
  • OhSoTired's Blog
  • PinkZebra's Blog
  • gluten-free Lover's Blog
  • Gluen Free Health Australia
  • Melissamb21's Blog
  • Andy C's Blog
  • halabackgirl9129's Blog
  • Liam Edwards' Blog
  • Celiac Disease in Africa?
  • Suz's Blog
  • Gluten-Free Fast Food
  • mis_chiff's Blog
  • gatakat's Blog
  • macocha's Blog
  • Newly Diagnosed Celiacs Needed for Study in Chicago
  • Poor Baby's Blog
  • the loonie celiac's Blog
  • jenlex's Blog
  • Sex Drive/Testosterone can be Depleted by Certain Foods
  • samantha79's Blog
  • 21 Months into the Gluten-free Diet
  • WashingtonLady's Blog-a-log
  • James S. Reid's Blog
  • Living with a Gluten-Free Husband
  • runner girl's Blog
  • kp3972's Blog
  • ellie_lynn's Blog
  • trayne91's Blog
  • Gluten-free Lipstick!
  • Nonna2's Blog
  • Schar Chocolate Hazelnut Bar (Gluten-Free)
  • pnltbox27's Blog
  • Live2BWell's Blog
  • melissajohnson's Blog
  • nvsmom's Blog
  • Diagnosed with Celiac Disease and Still Sick
  • snowcoveredheart's Blog
  • Gluten Free Nurse
  • Gluten-Free Frustration!
  • Melody A's Blog
  • novelgutfeeling's Blog
  • Trouble Eating Out Gluten-Free...Good or Bad?!
  • dilsmom's Blog
  • theceliachusband's Blog
  • amanda2610's Blog
  • Pancreas and Celiac Disease Link?
  • epiphany's Blog
  • Patty55's Blog
  • The Latest Gluten-Free Food Recalls
  • kenzie's blog
  • CVRupp's Blog
  • Having a Bad Day at the Doctor's Office
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  1. Hey there! Before I get into the details, I just wanted to start off by saying how grateful I am to have come across this website. It is so comforting to know that there’s a community of people out there who understand the difficulties of celiac disease first hand. So thank you all for sharing your experiences. Below I’ve listed three main issues I’ve started seeing and I am seeking some advice. For context: I’ve been following an 100% gluten free diet for about 6 months now, but just started noticing these symptoms within the last couple of weeks or so. I’m not sure if anyone else has experienced these problems too but just thought it wouldn’t hurt to reach out. LACK OF APPETITE: Has anyone else experienced a lack of appetite after following a strict gluten free diet? I’ve personally always had a great relationship with food and eating regularly. But ever since following a gluten free diet, I haven’t been eating much, or anything at all for that matter. Sometimes I won’t even realize that I haven’t eaten anything by dinner time. I genuinely don’t feel hungry. Can others relate? Any tips? INSOMNIA: It just these last couple of weeks where I have been experiencing the worst insomnia. I can’t sleep at all anymore. I’m lucky if I fall asleep around 2-3 o’clock. It’s been so incredibly frustrating for me to deal with. I just feel so lost with this. I’ve tried googling and to my understanding, no gluten in my diet makes it harder to get tired? Idk. Feel free to correct me on that one. I’ve tried sleeping pills but I really want to avoid relying on them if possible. I have a vitamin b-12 deficiency, and have read that others have found that taking b-12 before bed has improved sleep. Im willing to try anything at this point, so I’ll see if it works. Haha as I’m writing this at 2:30 am. NAUSEA: I’ve noticed as I’m lying down to sleep I feel slightly nauseous. I just have to sit up which makes it harder to sleep. Disclaimer, i haven’t actually thrown up yet. It’s weird, it doesn’t reach or get to that point really, but I’ll still feel nauseous. Mainly at night but sometimes during the day. Has anyone else experienced this? If you have any advice please share.
  2. I am really struggling watching my child not recover with the gluten-free diet, and would appreciate any input or advice. My 10 year old son had a sudden onset of symptoms with what we think might have been a GI virus (although he had had frequent illnesses the 6 months prior, which might have been because of Celiac). He woke up one morning with nausea, vomiting, dizziness, and pain in the lower right quadrant of his abdomen (right where his appendix is). It took 5 weeks to get a diagnosis via scope (his TTG IGA was only 5, measured twice, with 1-3 being normal and 4-10 being a faint positive). He was put on laxatives during this time and diagnosed with gastroparesis. He is now on Reglan, and off laxatives, and is having normal consistency stools once a day. The vomiting has stopped, I think because the Reglan is moving food through him. We almost at week 6 gluten-free- and I feel like we are being really strict and careful with it. About 4 weeks into the gluten-free diet he had lost more weight, so they sent him to the hospital for tube feeding (beyond the stomach). We are now home, and supplementing his diet with the Kate Farms tube feeding formula 2 times a day (no tube, just drinking it). It is a pea protein/ rice peptide drink that is supposed to be good for celiacs. His dizziness, fatigue, nausea, and abdominal pain are the same as before he was diagnosed. We do not have good GI support here, I am trying to get a GI consult from a pediatric celiac center in our state. His PCP is great, but not an expert on celiac. I had her test for some of the common vitamin deficiencies (B12, B6, Iron w/Ferritin,Copper, E, D 25 hydroxy, A, Phosphorus, Zinc, Folate, Magnesium, and later B1). He was only low on Copper, but was close to the low threshold on D. I had already started him on a B complex and D vitamins. His B6 was high (168, high threshold of 68). Could the supplements I was giving him before the testing have created a falsely high reading on B vitamins and D? Anything else I should have checked? I’ve read about Choline on here, maybe test for that? We have worked with a naturopath as well, he is taking glutamine, probiotics, and vitamin D. We tried giving him copper supplements, but they made him vomit and so nauseous he couldn’t eat for 12 hours. His stool is light in color, but does not appear “greasy” or extra smelly. He has also had trouble with dizziness and reading since this started (he went to an opthamologist and she said his eyes are fine). After our last stint at the hospital, I reduced his diet to rice, meat, vegetables, light dairy, fruit- no nightshades, nuts, seeds, or other grains. We did that for 10 days with no change in symptoms. He had his dissacharides tested, and lactase was in the normal range, which means he can have some dairy, right? He really wants to add back in tofu, beans, gluten-free bread products. I don’t want to restrict his diet for no reason, what should I do? We’ve been keeping a food diary and are not seeing any correlation between certain foods and symptoms. His symptoms have been stable throughout the entire sickness- a 3 out of 10 pain in the abdomen, right where his appendix is (made worse by eating or movement), nausea, dizziness, fatigue. Any suggestions on diet? Enzymes? We are going to do a GI Map type of test soon through the naturopath. He did have amoxicillin for the first time 3 weeks before the sudden onset of symptoms. He has had a brain MRI, CT scan, ultrasound to visualize appendix, barium contrast xray of small intestine, gastric emptying study (he was 2-3 times normal, before Reglan), colonoscopy and endoscopy, genetic test (he has one of the genes), and many other blood/urine tests. He’s been tested for thyroid, has normal glucose, normal ANA and RA tests.

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  4. Celiac.com 07/29/2023 - For many years Gluten Intolerance Group™ (GIG) has advocated on behalf of persons with celiac disease. Advocacy can include the increase of celiac disease awareness, the improvement of knowledge and educational materials distributed by any number of organizations, sitting on boards and committees of coalitions on behalf of persons with celiac disease or dermatitis herpetiformis, and fighting to pass legislation that will improve the quality of life for persons with gluten intolerance. Advocacy is important work. It takes skill and the desire to work as a team. At times the work can also be slow and frustrating. According to Kay Holcombe’s presentation at the 2002 GIG™ Annual Education Conference in Winston-Salem, North Carolina, anyone can learn to be an effective advocate. Ms. Holcombe is a lobbyist with Policy Directions, Inc. in Washington DC. She has years of health care and label reform experience. At the conference Ms. Holcombe offered the following advice for how to become an effective advocate: Keep your agenda short and to the point – When you advocate you should have no more than three agenda items or points to cover. Know what they are, what you want, and how you are going to get your message across. When you try to make too many points during a presentation it can lose its power and influence. Be knowledgeable about the issue – It is important to thoroughly understand an issue before you discuss it with your congressperson. If you do not understand the issue well enough you cannot answer questions about it or understand how it will impact people. The last thing you want to do is to lose your congressperson’s respect because do not know what you are talking about or are confused. Be honest – The rule here is do not try to mislead them. Their staff will do extensive research and will know if you are being less than honest. Have a consistent message – Nothing can hurt your cause more than to have several people who advocate it but do not say the same thing about it. Everyone must use the same words in the same manner. The message should be short, simple and consistent. Even slight deviations in your message could convey to representatives that you are not united. Everyone must ‘Speak with One Voice.’ Ms. Holcombe also advised that success in advocacy work is often measured in small victories, and not necessarily in an all-out victory. A good example of this is the ingredient label reform bill currently being considered by congress. The original bill required that seven major allergens (including wheat) be clearly labeled on all food products. Through an extensive letter writing campaign, partnerships with other influential groups and expert testimony, additional language was added to the bill so that it also included "other grains containing gluten (rye, barley, oats and triticale)." This was a great victory for us— even if the bill does not ultimately pass. We got them to understand that gluten in food is an important issue for many people. Other celiac organizations have also joined GIG™ to do advocacy work. Currently most of our advocacy work is national in scope, but we also work on state issues. To "speak with one voice" in order to be effective advocates is an important lesson that provides celiac organizations in the U.S. with an opportunity to show unity for a common cause. While not always an easy task, it is an important goal that will benefit all persons with gluten intolerance. To learn more about the advocacy efforts of GIG™ contact us at gluten.net. We are currently working on national issues that could affect people with gluten intolerance in the following areas: quality of life, extra cost of food reimbursement, product labeling, research, professional and public awareness and education, and restaurant regulations.
  5. Celiac disease support groups in the United States - Includes national organization affiliation (if any). Alabama Birmingham - Support Group Birmingham Celiac Disease Support Group (Alabama) Contact: Rebecca Kinney Email: birminghamceliac@hotmail.com Los Angeles - Support Group: Awesome Friends with Food Sensitivities Contact: Harmony Hopkins Email: awesomefriendsmeetup@gmail.com Arizona Fountain Hills - Support Group Contact 1: Allyn Krieger-Fiedler NMD E-mail: drakfiedler@cox.net Contact 2: Margy Squires E-mail: msquires@e-tyh.com Green Valley - Support Group Contact: Kay Bleuer E-mail: nkbleuer@yahoo.com Payson - Support Group Contact 1: Nancy A. Palmer Payson Area Celiac Support Group HC 2 Box 95-S Payson, AZ 85541 Tel: (520) 478-4383 Contact 2: Jane Kendall HCR Box 305-B Payson, AZ 85541 Tel: (520) 474-6707 Arkansas Hot Springs Village - Resource: Contact: Betty Shepherd 11 Indiana Circle Hot Springs Village, AR 71909 Tel: (501) 922-6034 Little Rock - Support Group Contact: Anne Luther Gluten Free in Central Arkansas 4710 Sam Peck Road, 1015 Little Rock, AR 72223 Tel: (501) 223-3981 E-mail: aaluther@comcast.net Mountain Home - Support Group Contact: Marilyn H. Jorgensen Arkansas/Ozark Celiac Support Group (CSA) 198 Cochran Drive Mountain Home, AR 72653 Tel: (501) 492-5243 Rogers - Support Group Contact: Janice Carmichael Northwest Arkansas Celiac-Sprue Group (Fayetteville, AR) 2703 Kathy Lane, Rogers, AR 72653-8725 Tel: (501) 636-8995 California Carlsbad - Resource: Contact: Helen Foreman 7112 Lantana Terrace Carlsbad, CA 92011 Tel: (760) 931-7809 E-mail: bhforeman@webtv.net Lake Arrowhead - Support Group Contact: Jeanne Dickson PO Box 2052 Lake Arrowhead, CA 92352 Tel: (208) 699-5913 E-mail: gfjeanne@msn.com Marin - Support Group Gluten Intolerance Resource Group of Marin Contact: Alison St. Sure Tel: (415) 785-4980 Merced - Resource: Contact: Gary L. Brackney Sr. 3596 Hagen Court Merced, CA 95348 Tel: (209) 722-7760 Modesto/Stockton/Turlock - Support Group Central Valley Celiacs Contact: Karen Cadiz Tel: (209) 823-3211 E-mail: centralvalleyceliacs@comcast.net Oakland - Support Group Contact 1: Melissa Batavia Sprue Group of the SF Bay Area Tel: (510) 655-2555 E-mail: melbatavia@comcast.net Orange County - Support Group Contact: Cecile Weed Orange County Celiacs Tel: (714) 750-9543 Palm Springs - Resource: Contact: Taylor Cushmore 2283 S. Alhambra Drive Palm Springs, CA 92264 Tel: (760) 416-2051 E-mail: TaylorCush@aol.com Redding - Support Group: The Redding Gluten Free Support Group Contact: Misty Price Redding, CA 96003 Tel: (530) 223-2167 E-mail: mistyprice@charter.net San Luis Obispo County - Support Group Central Coast Celiacs Contact: Isabella Porter Tel: (805) 314 0394 Email: thecentralcoastceliacs@gmail.com San Bernardino - Support Group Contact 1:Patricia Berger Redlands Area Celiac Sprue Support Group 627 Fountain Ave. Redlands, CA 92373 Tel: (909) 793-3712 San Diego Support Group Contact : William & Helen Foreman 7112 Lantana Terrace Carlsbad, CA 92009 Tel: (760) 931-7809 E-mail: bhforeman@webtv.net San Gabriel Valley - Support Group CDF East San Gabriel Valley Contact: Lynne Turner Tel: (626) 915-2196, E-mail: travelynne812@yahoo.com Santa Ana - Support Group Santa Ana Celiacs Contact: Cecile Weed 13471 Marty Lane Garden Grove, CA 92843 Tel: (714) 750-9543 Contact 2: Debbie Lee Tel: (714) 830-8237 Santa Cruz - Support Group Santa Cruz Celiac Support Group Contact: Pam Newbury 543 Ice Cream Grade Santa Cruz, CA 95060 Tel: (831) 423-6904 E-mail: pam@santacruzceliac.org Internet: http://santacruzceliac.org Santa Rosa - Support Group Contact 1: Laura Southworth Sonoma County CSA 480 Bohemian Highway Freestone, CA 95472 Tel: (714) 798-3112 Contact 2: Rosemary Yates 129 Grenvillia Drive Petaluma, CA 94952 Tel: (707) 766-8606. Stockton - Support Group Contact 1: Karen Cadiz Central Valley Celiacs (CSA) E-mail: centralvalleyceliacs@comcast.net Tel: (209) 823-3211 Temecula - Support Group: Contact: Ramona Inman Celiac Disease Foundation - Temecula Tel: (951) 676-0651 E-mail: ramonacdf@aol.com Ventura County - Support Group Contact: Kathy Button 2525 Waxwing Ave. Ventura, CA 93003 Tel: (805) 650-0520 E-mail: venturaceliac@sbcglobal.net Walnut Creek / Contra Costa County Support Group Walter Moeller, Founder and President Walter Moeller Tel: 925-932-8875 Email: GlutenfreeWC@Gmail.Com Colorado Berthoud - Resource: Contact: William R. Eyl 2600 Blue Mountain Avenue Berthoud, CO 80513 Tel: (303) 772-3155 Colorado Springs - Support Group Contact: Virginia Ludwig Pikes Peak (CSA) 3705 Meadowland Blvd. Colorado Springs, CO 80918 Tel: (719) 598-6748 Colorado Springs - Support Group Contact: Victoria Garcia Celiac Youth Support Group 3408 Colony Hills Road Colorado Springs, CO 80916 E-mail: jv4garcia@msn.com Denver - Support Group Contact: Betty Elofson Denver Celiac Sprue Association (CSA) Tel: (303) 238-5145 Denver - Support Group Contact 1: Donna Steelman Denver Celiacs Denver Metro Area 4617 S Joplin Way Auroa, CO 80015 Tel: (303) 699-6170 E-mail: donnasteelman@comcast.net Contact 2: Jill Smith 2289 W. Hyacinth Road Highlands Ranch, CO 80216 Tel: (303) 683-3281 Fort Collins - Support Group Contact 1: Deborah Fusco Northern Colorado Chapter (CSA) 4610 Shoreline Road Fort Collins, CO 80526 Tel: (970) 226-4105 E-mail: dfusco@hach.com Contact 2: Delores Valdez-Amick 803 S. Van Buren Ave. Loveland, CO 80538 Tel: (970) 663-4048 Highlands Ranch - Resource: Contact: Mary Ann Peterson 10111 S. Silver Maple Rd. Highlands Ranch, CO 80126 Tel: (303) 683-1461 Connecticut Danbury/Waterbury - Support Group Contact 1: Suzel Cable Nutmeg Chapter (CSA) 548 High St., 2nd Floor Naugatuk, CT 06770 Tel: (203) 723-1318 Contact 2: Edith K. Meffley Tel: (203) 438-6108. New Haven - Support Group Contact: Bill Jacobs Greater New Haven Celiac Group 100 Alexander Drive Cheshire, CT 06410 E-mail: wajacobs15@aol.com Northwest Connecticut - Support Group Contact: Marilyn Duffany Celiac Support Group of Northwest Connecticut (CSA) Tel: (203) 283-8506 Waterbury/Nutmeg - Support Group Contact 1: Carol Hoebel Celiac Sprue Support Group of NW Connecticut 84 Woodruff Ave. Thomaston, CT 06787 Tel: (860) 283-5577 E-mail: david.hobel@snet.net Contact 2: Suzel Cable 548 High St., 2nd Floor Naugatuk, CT 06770 Tel: (203) 723-1318 Contact 3: Edith K. Meffley Tel: (203) 438-6108 Contact 4: Joan Balough Tel: (203) 268-3829 Contact 5: Syd Aronowitz Tel: (203) 794-0150 . Delaware Wilmington/Newark - Support Group Delaware Celiac and Gluten Free Group Contact: Eva Szalewicz Tel: (302) 482-4882 E-mail: glutenfreedelaware@gmail.com Internet: http://glutenfreedelaware.tripod.com Florida Crystal River - Support Group Contact: Mary Lou Thomas Crystal River Celiacs 6350 W. Patriot St Homosassa, Florida 34448 Tel: (352) 628-9559 E-mail: mlthomas4cs@hotmail.com Daytona Beach - Support Group Contact: Juanita Ohanian Daytona Beach Celiac Support Group 2720 Autumn Leaves Drive Port Orange, FL 32128 Tel: (386) 492-3159 Email:juanitaohanian@gmail.com Fort Myers - Support Group Contact: Terry Foster Lee County Celiac Group Tel: (237) 935-5093 E-mail: terry@theskinnypantry.com Largo - Support Group Contact: Carol Anne Gluten Intolerance Support Group of Largo Cypress Palms, Largo 400 Lake Avenue N E Largo, Florida 33771 Tel: (727) 204-3538 E-mail: WyndStarrCO1@Yahoo.com Melbourne - Support Group Contact 1: Mary Kump GIG of Florida 3190 Village Park Melbourne, FL 32934-8296 Tel: (407) 254-2034 Contact 2: Michael Jones E-mail: mjones@digital.net Naples and Southwest Florida - Support Group Celiac Disease Support Group of Southwest Florida (NCA chapter) Contact: Aisling (ash-ling) Swift Tel: (239) 293-6092 E-mail: SWFLCeliac@gmail.com Internet: https://www.facebook.com/CeliacDiseaseSWFL/ Orlando - Support Group Contact: Michael Jones Celiacs of Orlando 12733 Newfield Drive Orlando, FL 32837 Tel: (407) 856-3754 E-mail: mjones@digital.net. Palm Beach - Support Group Contact: Phyllis Kessler Palm Beach County Celiac Support Group 15927 Laurel Creek Drive Delray Beach, FL 33446 Tel: 561-637-0396 Pensacola - Resource: Contact: Nancy Kilpatrick 5433 Lee St. West Milton, FL 32570 Tel: (904) 626-0064 Sarasota - Support Group Contact: Edith Kaplan Sarasota Celiacs E-mail: ediesrq@verizon.net South Florida Celiac Support Group CDF So. Florida Chapter Tel: 561-637-0396 Email: Pkessler23@AOL.COM Georgia Smyrna - Support Group Contact: Jan Austin Atlantic Celiac Support Group (CSA) Tel: (404) 433-9661 Warner Robins - Support Group Contact: Carol Hinton, Branch Manager Tel: (478) 397 5061 E-mail: middlegeorgiagig@yahoo.com Idaho Boise - Support Group Contact: Twylia McIlvanie Boise Idaho Celiac Support Group Tel: (208) 939-0373 E-mail: Scott Neil - SNeil@Cableone.net Illinois Aurora - Support Group Contact: Sandy Wright Aurora celiac disease/GI CSA Support Group Aurora, IL Email: sandywright@att.net Champaign - Support Group Champaign-Urbana Celiac Support Group E-mail: tlflipper76@aol.com Decatur - Resource: Resource: Jewell M. Barr 3333 Lost Bridge Rd. Decatur, IL 62521 Tel: (217) 423-8234 Peoria - Support Group Contact 1: Marsha Bishoff Central Illinois Celiacs (CSA) 619 Spring Street Washington, IL 61571 Tel: (309) 444-7415 or (309) 692-3848 Petersburg - Support Group Contact: Barb Hand Land of Lincoln Celiac Support Group R.R. 3, Box 276C Petersburg, IL 62675 Tel: (217) 632-2684 Rockford - Support Group Contact 1: Jolyn M. Fasula Rockford Area Chapter (CSA) 6816 Crown Ridge Rockford, IL 61103 Tel: (815) 877-5302 Contact 2: Ron Ford Tel: (815) 229-8804 Indiana Bloomington - Resource: Contact: Denise Brown Tel: (812) 824-9674 Evansville - Support Group Contact: Barbara Watson Evansville Celiac Sprue Support Group 1317 Bayard Park Dr. Evansville, IN 47714 Evansville - Resource: Contact: Gloria Baker 2711 Knob Hill Dr. Evansville, IN 47711 Tel: (812) 476-5744 Indianapolis - Support Group Contact: Joyce Etheridge Celiac Support Group of Indianapolis, (CSA) 1168 Sheffield Drive Avon, IN 46123 Tel: 317-272-4609 E-mail: mjbetheridge@aol.com Indianapolis - Support Group Contact: Diane Hosek 1371 Stoney Creek Circle Carmel, IN 46032 Tel: (317) 569-9670 Email: dianehosek@gmail.com Lafayette - Support Group Contact: Nancy H. Linnemann Indiana Gluten Intolerance Support Team (CSA) 2635 N 400 W., West Lafayette, IN 47906 Tel: (765) 497-0665 E-mail: n.linnemann@comcast.net La Porte - Resource: Contact: Margaret M. Diffendorfer 1012 Wright Avenue LaPorte, IN 46350 Tel: (219) 362-6607 Iowa Carroll - Resource: Contact: Lynne Humphrey 121 S. Maple St. Carroll, IA 51401-3123 Tel: (712) 792-5866 E-mail: hump@win-4-u.net Cedar Rapids - Support Group Cedar Rapids support group Contact: Theresa Brandon 2407 Linwood St. S.W. Cedar Rapids, Iowa 52404-3554 Tel: (319) 362.8087 E-mail: tatbrandon@gmail.com Iowa City - Support Group Contact: Sarah Berke Iowa City Celiacs 735 Michael St. #32 Iowa City, IA 52246 Tel: (319) 337-9521 Tipton - Support Group Contact: Jacey Drollinger Living Free Celiac Disease Support Group Tipton, Iowa 52772 Tel: (319) 886-6255 Waverly - Support GroupWaverly Area Celiac Group Contact 1: Jill Everding Denver, IA 50622 Tel: (319) 984-5928 E-mail: jill.everding@wartburg.edu Contact 2: Betty Bast Waverly, IA 50677 Tel: (319) 231-0107 E-mail: bastbetty13@gmail.com Kansas Leavenworth - Resource: Contact: Latisha May Thomas 1313 Vilas Leavenworth, KS 66048 Tel: (913) 682-6678 Manhattan - Support Group Contact: Rene' Eichem Manhattan Celiac Support Group 2442 Buttonwood Drive Manhattan, KS 66502 Tel: (913) 776-6013 Contact 2: Mary Jordan 2513 Nutmeg Manhattan, KS 66502 Tel: (913) 539-2963 E-mail: MJordan672@aol.com Topeka - Support Group Contact: Sharon Larson, President Topeka Celiac Sprue Support Group (CSA) 4310 SE McMahan Ct. Tecumseh, KS 66542 Tel: (785) 379-0479 E-mail: slars5@cox.net Wichita - Support Group Contact 1: Kay Finn Wichita Celiacs (CSA) 805 N. Cypress Wichita, KS 67206 Tel: (316) 686-7034 Kentucky Benton - Support Group Contact: Rose Mary Mueller Heartland CS.DH of W. Ky./S.Il. 102 Wyndy Brook Lane Benton, KY 42025 Tel: (270) 527-8330 E-mail: heartlandceliac@bellsouth.net Louisville - Support Group Contact 1: Emily McKinney Greater Louisville (Kentucky) CSA Chapter E-mail: ecmckinney@gmail.com Louisiana Baton Rouge - Support Group Contact 1: Mary Mack-Jeansonne, President Celiacs of Baton Rouge 3387 Madeira Drive Baton Rouge, LA 70810 Tel: (225) 766-8872 E-mail: celiacsbr@aol.com Baton Rouge - Support Group Baton Rouge Area Celiacs Contact: Glenda Worm Tel: (225) 571-7980 E-mail: pelinc1@bellsouth.net New Orleans - Support Group Contact 1: Diane Schaefer Greater New Orleans Celiac Sprue Support Group Tel: (504) 348-3099 Contact 2: Lorraine McCaslin Tel: (504) 833-1717 New Orleans - Support Group Contact: Annette Bentley, BA, MSc President, American Celiac Society P.O. Box 23455 New Orleans, LA 70183-0455 Tel: (504) 737-3293 Internet: www.americanceliacsociety.org Slidell - Resource: Contact: Jamie Head 3771 Arrowhead Dr. Slidell, LA 70458 Tel: (504) 643-2676 Maine Bangor - Support Group Contact 1: Ann Delaware Celiac Sprue Support Group of the Greater Bangor Area P.O. Box 472, Bradley ME 04411-0472 Tel: (207) 827-2733 Contact 2: Greg Chappelle 27 Hilliard St. Old Town, ME 04468 Bangor - Resource: 25 Cushing Drive Glenburn, ME 04401-1431 Tel: (207)-947-9958. Maryland Annapolis - Support Group Chesapeake Celiac Support Group Contact: Patricia Minnigh Tel: (410) 672-5834 Baltimore - Support Group Maryland Chapter 11 CSA/USA Contact 1: Phyllis Farmer 600 Straffan Drive, Unit 502 Timonium, MD 21093, Tel: (410) 560-1279 Contact 2: Doug Rettberg 498 South Hills Court Westminster, MD 21158 Tel: (410) 876-3604 Bethesda - Support Group Contact: Jerry Malitz Montgomery County Support Group Washington Area Celiac Support Group Email: dcmetroceliacs@gmail.com Delmarva - Support Group Contact: Betty Bellarin Maryland Delmarva Celiac Support Group E-mail: bbrboc@comcast.net Massachusetts Greater Boston and New England - Support Group Celiac Kids Connection Children's Hospital- GI/Nutrition Dept. 300 Longwood Ave. Boston, MA 02115 Tel: (617) 355-2127 https://www.celiackidsconnection.org/ E-mail: CeliacKidsConnection@childrens.harvard.edu Boston - Support Group The Healthy Villi (Greater Boston Celiac/DH Support Group, Chapter #67 of CSA/USA) Chairperson: Lee Graham E-mail: randlgraham@comcast.net Membership Chairperson: Catherine Mirick Tel: 888-4- CELIAC Cape Cod - Support Group Contact 1: Diane Bertrand Cape Cod Support Group PO Box 1114 North Falmouth, MA 02556 E-mail: Dibertrand@comcast.net Contact 2: Margo Finnell RD, MPH, LDN E-mail: Margo820@juno.com Fall River - Support Group Contact: Kathy Thiboutot Southeast New England (including Cape Cod ) Celiac Support Group Tel: (401) 624-8888. Lowell - Resource: Contact: Katherine C. Merrill 45 Tolman Ave. Lowell, MA 01854 Tel: (978) 454-2822 Michigan Battle Creek - Support Group Gluten Free Club Battle Creek, MI Contact: Nancy Makuch Tel (269) 979-7698. Coldwater - Resource: Contact: Bruce & Ruth Young 335 Barnhart Road Coldwater, MI 49036 Tel: (517) 278-8248 Escanaba - Resource: Contact: David A. Jondrow 312 Minneapolis Ave. Gladstone, MI 49837 Tel: (906) 428-1621 Gladstone - Resource: Contact 1: David A. Jondrow 312 Minneapolis Avenue Gladstone, MI 49837 Tel: (906) 428-1621 Grand Rapids - Children's Support Group Contact: Nancy Spears E-mail: celiackids@glutenfreegr.com Kalamazoo - Support Group CSA of Greater Kalamazoo Contact: Annette Hensley Tel: (269) 492-5278 Michelle Rutan Tel: (269) 342-1533 Internet: www.glutenfreekzoo.org Lansing - Support Group Greta DeWolf 1815 Sandhill Rd. Mason, MI 48854 Tel: (517) 349-0294 Internet: http://micapitalceliacs.atspace.com Support Group Contact: Donovan J. Sprick Mid-Michigan Chapter (CSA) Tel: (313) 733-6857 Dryden - Support Group Tri-County Celiac Support Group, SE Michigan Internet: https://www.tccsg.net/ Minnesota Brainerd Lakes Area Celiac Support Group Contact: Jennifer Chock Brainerd, MN Tel: (218) 825-9525 Minneapolis/St. Paul Area Support Group Contact: Karen Geronime Northland Celiac Support Group (formerly Midwest Gluten Intolerance Group) E-mail: klgeronime@aol.com Greater Minneapolis Area - Support Group Mpls./St. Paul and greater Minnesota Area Support Contact: Lynn Gabriel Tel: (952) 443-2626 E-mail: lynnshadlegabriel@yahoo.com Contact 2. Carol Crandall E-mail: cgrzlybr@aol.com Rochester Support Group Contact: Coyla Shepard, Founder Southeast Minnesota Celiac Support Group 2805 Hidden Hills Lane NE Rochester, MN 55906 Contact 2: Warren Budd Tel: (507) 288-9056 Mississippi Gulfport - Support Group Contact: Jane Dacey Mississippi Celiac Support Group P.O. Box 1276 Ocean Springs, MS 39566 Tel: (601) 875-2820 Missouri Branson - Support Group GIG of Branson Tri-Lakes Barbara Hicks 9 Arrowhead Road Kimberling City, MO 65686 Tel: (417) 739-2703 E-mail: honedu@centurytel.net Kansas City - Resource: Contact: Elanor R. Aadams 135 N. Missouri Liberty, MO 64068 Tel: (816) 781-6514 Nevada (and Southeast Kansas) - Support Group Gluten Intolerance Group of North America Contact: Sharon Jepson Tel: 979-848-7455 St. Louis - Support Group Contact 1: Bill Vellios Sr. St. Louis Chapter (CSA) 812 Kehrs Mill Road Ballwin, MO 63011-2442 Tel: (314) 391-6855 Contact 2: Joan Fitzsimmon 6716 Westway Road St. Louis, MO 63109 Tel: (314) 351-5114 Contact 3: Linda Ritter E-mail: nltr@charter.net Montana Alzada - Resource: Contact: Teri Lindberg HC 56, P.O. Box 60 Alzada, MT 59311 Big Timber - Resouce: Contact: Debra Barrett P.O. Box 1018 513 W. Third Big Timber, MT 59011 Billings - Resouce: Contact: Dennis McGough 1023 Marie Dr. Billings, MT 59101 Tel: (406) 256-5569 Choteau - Resource: Contact: Jeanette Rasmussen 4210 Highway 89 Choteau, MT 59422 Tel: (406) 466-2091 Columbus - Resource: Contact: Jeanne Murray P.O. Box 594 Absarokee, MT 59001-0594 Tel: (406) 328-4851 Deer Lodge - Resource: Contact: Eloise Faber 911 Missouri Avenue Deer Lodge, MT 59722 Tel: (406) 846-1246 Havre - Resouce: Contact: Ruth Wardell Havre, MT 59522 Tel: (406) 265-1701 Helena - Resource: Contact: Judy Harris 1817 Silver St. Helena, MT 59601 Tel: (406) 443-5158 Missoula - Resource: Contact: Dottie Caluori 1440 River St. Missoula, MT 59801 Tel: (406) 542-7499 Wolf Point - Resource: Contact: Alice Whitmer 872 Nickwall Road Wolf Point, MT 59201 Tel: (406) 525-3289 Celiac disease support groups in the United States - Includes national organization affiliation (if any). Nebraska Grand Island - Support Group Contact: Keith McTavish Central Nebraska Celiacs P.O. Box 411 Wood River, NE 68883 Tel: (308) 583-2949. Grand Island - Resource: Contact: Diane D. Epp Box 595 Henderson, NE 68371 Tel: (402) 723-4759 Omaha - Support Group Contact 1: Lynn Samuel Midlands Chapter (CSA) 6303 Kentucky Road Papillion, NE 68133 Tel: (402) 339-1346 Contact 2: Rebecca Warren Tel: (402) 235-3576 Seward - Resource: Contact: Mary Schluckebier 1616 Plainview Avenue Seward, NE 68434 Tel: (402) 643-4340 Nevada Las Vegas - Support Group Contact: Jennifer Sullivan Tel: (702) 985-7664 Las Vegas - Resource: Contact: Joanne B. Mathews 270 W. Basic Road Henderson, NV 89015 Las Vegas - Resource: Contact: Catherine Hammelrath 3355 Rolan Court Las Vegas, NV 89121 Tel: (702) 733-7633 E-mail: vegascat53@cox.net Reno Support Group Contact: Kerry Seymour, MS, RD, CDE Reno Celiacs & Nutrition Resources 475 Hill Street, Suite C Reno, Nevada 89501 Tel: (775) 329-8811 New Hampshire Laconia - Resource: Contact: Ann Marie Shumway 2541 Old Parade Rd. Laconia, NH 03246 Tel: (603) 528-1911 Nashua area - Support Group Contact 1: John Waksmonski Tel: (603) 437-1702 Contact 2: Christine Muir E-mail: themuirs@charter.net New Jersey Brick - Resource: Contact: Gary Powers 284 White Oak Court Brick, NJ 08724 Tel: (732) 840-3718 Cherry Hill - Resource: Contact: Fran Twersky 107 East Burgess Road Marlton, NJ 08053-1202 Tel: (609) 983-3362 Hackettstown - Resource: Contact: Mrs. Merle Morse P.O. Box 148 Hackettstown, NJ 07840 Tel: (908) 852-7311 Long Branch - Support Group Specialized Pediatric Celiac Group Specialized Ped. Ambulatory Center 307 3rd Avenue Long Branch, NJ 07740 Tel: (201) 870-5216 New Brunswick - Support Group Contact 1: Diane Eve Paley Celiac/DH Support Group and Cel-Kids Network CSA/USA Inc. #58 22 Island Drive Old Bridge, NJ 08857-2518 Tel: (908) 679-6566 E-mail: DEPaley@AOL.COM Contact 2: Alex Schwedack 5-c Twin Rivers Dr. East Windsor, NJ 08520 Tel: (609) 443-6623 Old Bridge - Support Group Contact: Diane Eve Paley Central Jersey Celiac/DH Support Group, CSA/USA 22 Island Dr. Old Bridge, NJ 08857 Tel: (732) 679-6566 E-mail: DEPaley@aol.com. Paramus - Support Group Contact: Lauri Schlussel American Celiac Society Bergen County 11 Marz Road Westwood, NJ 07675-8217 Tel: (201) 573-0397 South Jersey - Support Group CSA Southern New Jersey Chapter #9 Contact 1: Leah Edelstein, Co-chairperson 23 Stevens Drive Voorhees, NJ 08043 Tel: (856) 435-6785 E-mail: ledelstein@comcast.net New Mexico Albuquerque - Support Group Contact: Marilyn Johnson Albuquerque Gluten Intolerance Support Group Celiac Sprue Association New Mexico State Coordinator Tel: (505) 299-5283 E-mail: marilynyj@comcast.net Las Cruces - Support Group Las Cruces Celiacs Contact: Susan Pieper 4825 Senita Las Cruces, NM 88011 Tel: (505) 522-8182 E-mail: spieper@huntel.com New York Albany - Support Group Contact: Barbara Jordan Capital District Celiac Support Group (Albany - ACS) Tel: (518) 439-8652 Batavia - Resource: Contact: Virginia R. Baldwin P.O. Box 158 Pavilion, NY 14525 Tel: (716) 584-3422 Binghamton - Support Group Contact: Nancy Dorfman Celiac Self Help Group 12 Laurel Avenue Binghamton, NY 13905 Tel: (607) 722-3848 Buffalo - Support Group Contact 1: Mike Lodico Gluten Free In WNY (GIG) P.O. Box 24 N.Tonawanda, NY 14120 Tel: (716) 694-3287 E-mail: glutenfree2@gmail.com Contact 2: Joanne Hameister Tel: (716) 655-0849 E-mail: jeham@buffnet.net Hudson Valley Area - Support Group Contact: Cathy Selber Mid-Hudson Valley Gluten-Free Outings Meetup Group E-mail: clselber@optonline.net Ithaca/Cornell - Support Group Contact: Laura Johnson-Kelly 48 Comfort Rd. Ithaca, NY 14850 Tel: (607) 272-5902 E-mail: LWJ1@cornell.edu. Ithaca - Resource: Contacts: Mary Ochs 18 Whig St. Trumansburg, NY 14886 Tel: (607) 387-9221 E-mail: mao4@cornell.edu. Long Island - Support Group Contact 1: JoanAnn Defiglia Long Island Celiacs 1023 Jackson Avenue Franklin Square, NY 11010 Tel: (516) 437-0396 Contact 2: Ellen Mulligan 193-5th St. Hicksville, NY 11801 Contact 3: James J. Callahan Tel: (516) 794-1654. Middletown - Support Group Contact: Marisa Frederick Celiac Kids' Club 264 Scotchtown Road Goshen, NY 10924 Tel: (914) 294-1385 New York - Support Group Contact 1: Mary Ferry Greater New York Celiac Support Group (CSA) Tel: (212) 304-1026 Rochester - Support Group Rochester Celiac Support Group Contact 1: Susan Kath 1039 Moseley Road Fairport, NY 14450 Tel: (585) 425-9994 Contact 2: Marvin Becker 210 Crandon Way Rochester, NY 14618 Tel: (585) 442-9528 Internet: http://www.rochesterceliacs.org Suffolk County - Support Group Suffolk County (NY) Celiacs-a Branch of GIG Contact 1: Les Doti P.O. Box 13 Kings Park, NY 11754-0013 Contact 2: Michael Thorn Tel: (631) 395-5071 E-mail: SuffolkCeliacs@aol.com Williamsville - Support Group Contact: Cliff Hauck, Co-Chairperson P.O. Box 1835 Williamsville, NY 14231 Western NY Gluten Free Diet Support Group (CSA/USA Chapter #33-1990) Tel: (716) 636-6021 E-mail: hauckc@adelphia.net Internet: http://www.buffaloglutenfree.org North Carolina Asheville - - Resource: Contact: Leah R. Karpen 518 Ox Creek Road Weaverville, NC 28787 Tel: (704) 645-9067 Boone - Resource: Contact: Ernest Lane 827 Blairmont Dr. Boone, NC 28607 Tel: (704) 264-4618 or (704) 262-2380 E-mail: epl@math.appstate.edu Durham - Fayetteville Support Group Contact 1: Ruth Thomas North Carolina Celiacs (CSA) Tel: (919) 542-4030 Contact 2: Susan Black Tel: (910) 875-3186 North Dakota Bismarck - Support Group Contact: Lila Brendel Central ND Celiac Resource Group 1900 93 St. SE Bismarck, ND 58504 Tel: (701) 258-7800 E-mail: CNDC_GIG@msn.com Fargo - Support Group Contact: Stacey Juhnke or Sara Vollmer GIG of Fargo-Moorhead PO Box 464 Fargo ND 58107 Tel: (701) 237-4854, (701) 412-8110, (701) 238-0587 Email: GIG_FM@hotmail.com Oakes - Support Group Contact: Juli Becker North Dakota Celiacs (CSA) 10585 85th St. SE Oakes, ND 58474 Tel: (701) 742-2738 Ohio Bellevue - Support Group Contact: Dennis & Cheryl Dendinger North Coast Celiac Support Team Bellevue, OH 44811 Tel: (419) 483-6529 Cleveland- Support Group Northeast Ohio Celiac Support Group E-mail: info@neohioceliac.com Contact: Trisha Lyons, RD, LD 2500 MetroHealth Dr. Cleveland, OH 44109 E-mail: TLyons@metrohealth.org Tel: (216)-778-7835 Internet: www.neohioceliac.com Cleveland - Support Group Contact: Cindy Koller-Kass, President Greater Cleveland Celiac Association CSA/USA Chapter 50 33040 Rockford Drive Solon, OH 44139 Tel: (440) 248-6671 E-mail: glutenfree1@yahoo.com Cleveland - Support Group Generation gluten-free Cleveland Contacts: Suzy Evans, Lisa Eggleston, Deana Romanov Brach of Gluten Intolerance Group Support for children in North East Cleveland E-mail: GenerationGF.Cleveland@gluten.org Gluten Free Support Group of NW Ohio Contact: Holly McCollam Email: glutenfreesupportgroupofnwohio@aol.com Internet: https://www.facebook.com/groups/glutenfreesupportgroupofnwohio Columbus - Support Group Contact: Mary Kay Sharrett Gluten Free Gang 700 Children Drive Columbus, OH 43205-2696 Tel: (614) 722-3093 E-mail: sharretm@chi.osu.edu Contact 2: Monica Hrabowy 663 Laurel Ridge Drive Gahanna, OH 43230 Tel: (614) 337-1833 Tel: EHrabowy@aol.com. Internet: http://www.glutenfreegang.org Logan County Support Group Contact: Amy Keller Tel: (937) 651-6428 E-mail: amy.keller@maryrutan.org Mansfield - Support Group Contact: Bev Messner Richland County Celiac Support Group First Presbyterian Church 399 S. Trimble Rd. Mansfield, OH E-mail: bevmessner@aol.com Tel: (419) 589-5972 Toledo - Support Group Contact: Holly McCollam Gluten Free Support Group of NW Ohio E-mail: glutenfreesupportgroupofnwohio@aol.com Internet: https://www.facebook.com/groups/glutenfreesupportgroupofnwohio/ Oklahoma Norman - Resource Contact: Kate Martin Norman, OK Tel: (405)364-5612 email: one4life@swbell.net Internet: http://katesceliac.blogspot.com Oklahoma City - Support Group Contact: Heather Cline Oklahoma Celiac Sprue Support Group (CSA) 1403 Classen Drive, Oklahoma City, OK 73106 Tel: (405) 235-1715 E-mail: HMCline@aol.com Okmulgee - Resource: Contact: Barbara Sipple Rt. 1, Box 247 Morris, OK 74445 Tel: (918) 733-4571 Tulsa - Support Group: Contact: Jennifer Croley Celiac Sprue Association Tulsa Chapter #119 E-mail: csatulsa@gmail.com Oregon Burns - Resource: Contact: Nici Bailey 449 S. Diamond Burns, OR 97720 Tel: (541) 573-1164 Grants Pass - Support Group Contact: Janine Chambers 1035 NE 6th St. Grants Pass, OR 97526 Tel: (541) 218-0229 Portland/Vancouver - Support Group Portland Metro GIG Branch Contacts Contact: Mary Wikle - Branch Manager PO Box 4204 Tualatin, OR 97062-4204 Tel: (503) 692-0724 E-mail: mwikle_carousel@yahoo.com Salem - Support Group Contact #1 - Ann Grafe 1328 Dogwood Drive Woodburn OR 97071 Tel: (503) 982-3644 Pennsylvania Danville - Support Group Contact: Elaine M. Jeffreys ACS Danville City Support Group R.d.#6 Box 143 C Danville, PA 17821 Tel: (717) 275-0654 Gluten Free Group of Gettysburg Betsy Wargo, RD 717-339-2764 e-mail: bwargo@wellspan.org Indiana - Support Group Indiana Regional Medical Center Celiac Support Group Contact: Brenda Shilling, Director of NFS Indiana Regional Medical Center Indiana, PA 15701 E-mail: bshilling@indianarmc.org Mount Pleasant - Support Group Mount Pleasant Celiac Support Group Contact: Vicky Vrabel 616 West Main Street Mount Pleasant, Pennsylvania 15666 Tel: (724) 542-9745 Philadelphia - Support Group Contact: Laura Sposito ACS Whoo Sprue Group 1211 Tree Street Philadelphia, PA 19148 Tel: (215) 336-5004 Philadelphia - Support Group Contact: Karen Dalrymple Greater Philadelphia Area Celiac Sprue Support Group 583 Valley View Rd. Langhorne, PA 19047 Pittsburgh - Support Group Contact: Elsie Janthey Pittsburgh East Area Celiac Sprue Support 204 George Lane Pittsburgh, PA 15235 Tel: (412) 823-2010 Contact 2: Lois Kosoglow Tel: (412) 744-2356 Contact 3: Ruth Masengill Tel: (412) 327-5564 Pittsburgh - Support Group Contact: Lorraine Weaver, Treasurer and Membership Greater Pittsburgh Celiac Sprue Support Group, Chapter #48 CSA/USA 1446 Greenbriar Court Library, PA 15129 Tel: (412) 835-4983 or (412) 833-9507 Wilkes-Barre/Scranton - Support Group Contact: Rosemarie Butera CSA/USA Wilkes-Barre/Scranton Celiac Support Group Tel: (570) 655-0728 Wynnewood - Resource: Contact: Rita M. Herskovitz 52 Rockglen Road Wynnewood, PA 19096 Tel: (215) 642-9351 Rhode Island Providence - Support Group Contact: Tanis Collard MA & RI Celiac Support Group for Children 11 Level Acres Road Attleboro, MA 02703-6843 Tel: (508) 399-6229 South Carolina Columbia - Support Group Contact 1: Peggy Smith Palmetto Celiac Support Group 1508 Anthony Drive West Columbia, SC 29172 Tel: (803) 775-9466 or (803) 755-7291 Florence - Resource: Contact: Lea E. Marshall 1214 Hillside Avenue Florence, SC 29505 Tel: (803) 665-6290 Tennessee Jackson - Support Group Contact: Allan Clement 151 Lone Oak Dr. Jackson, TN 38305 Tel: (731) 423-5315 E-mail: aclementhome@hotmail.com Memphis - Support Group Contact: Sally Damron E-mail: srdamron@bellsouth.net Nashville - Support Group Nashville Celiac Support Group (CSA) Contact: Darryl Casey, Co-chair Tel: 615-481-4445 E-mail: DarrylCasey@yahoo.com Texas Dallas - Support Group Lone Star Celiac Gluten Intolerance Group Contact: Rose Mary Simmons 2603 Dorrington Drive Dallas, TX 75228 Tel: (214) 328-7286 E-mail: president@dfwceliac.org Eastland - Resource: Contact: Jill Hollywood P.O. Box 938 Eastland, TX 76448-0938 Tel: (254) 629-1299 Fort Worth - Support Group Contact: Betty Barfield, President North Texas Gluten Intolerance Group North Richland Hills, TX 76182 Houston - Support Group Houston Celiac Sprue Association Janet Y. Rinehart, Chairman 13722 Ashley Run Houston, TX 77077 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Chapter web site: http://www.houstonceliacs.org Midland - Support Group Contact 1: Pat Gatlin West Texas GF Awareness Group 11809 W. County Road, #54 Midland, TX 79707 Tel: (915) 563-4847 San Antonio - Support Group Alamo Celiac San Antonio Contact 1: Anne Barfield 606 Jackson Keller San Antonio TX 78216-7121 Tel: (210) 340-0648 E-mail: AnneBarfield@satx.rr.com Contact 2: Lynn Rainwater 5014 Gemsbuck Chase San Antonio TX 78251-4380 Tel. (210) 509-0179 E-mail: txlynnr@swbell.net Texas Hill Country - Support Group Austin Gluten-Free Friends Contact: Kay Stence 1863 Greenwood Lane Kingsland, TX 78639 Tel: (512) 632-3682 or (325) 388-3103 E-mail: kstence@marykay.com Texarkana - Resource: Contact: Marie Freeman Rt 6, Box 465-F Texarkana, TX 75501 Tel: (903) 793-1392 Utah Salt Lake Gluten Intolerance Group (GIG) St. Mark's Hospital (meeting place) Pam Ward - CoChair Sandi Bigelow - CoChair Tim Coda - CoChair Marcie Coda, Branch Manager E-mail: saltlakegig@gmail.com Vermont Bennington - Support Group Contact: Lynn Grieger Southern Vermont Celiacs RD3 Box 586 Arlington, VT 05250 Tel: (802) 375-9069 St. Albans - Support Group Contact: Suzanne Ludlam Celiac Support Group of Vermont E-mail: rsludlam@yahoo.com Virginia Alexandria, Arlington - Support Group Contact: Jerry Malitz Washington Area Celiac Support Group Email: dcmetroceliacs@gmail.com Chesapeake, VA - Support Group Contact: Dawn Ryan Celiac Disease Foundation Chesapeake Tidewater Chapter E-mail: ctcglutenfree@gmail.com Washington Bellingham - Support Group Bellingham Gluten Intolerance Group Contact: Kelle A. Rankin-Sunter P.O. Box 28894 Bellingham, WA 98229 Tel: (360) 332-7435 E-mail: celiac@nuwworld.com Internet: http://www.glutenfreeway.info Seattle - Support Group Gluten Intolerance Group 15110 10 Ave. SW, Suite A Seattle, WA 98166-1820 Tel: (206) 246-6652 Internet: https://www.gluten.net Renton - Support Group Contact: Lynn Jameson E-mail: Southseattlegfgroup@yahoo.com West Virginia Huntington - Support Group Tri-State Celiac Sprue Support Group Contact: Deborah Yeager 5425 Lea Hill Dr. Huntington, WV 25705 Tel: (304) 733-5867 Wisconsin Appleton - Support Group Fox Valley Celiacs Contact: Helen Morris 1369 Graystone Court Depere, WI 54115 Tel: (920) 337-9235 E-mail: hbmorris1369@sbcglobal.net La Crosse - Support Group La Crosse Area CS Support Group Contact: Mary Lou Balts 700 Angel Ct. Apt.213 Holmen, WI 54636 E-mail: baltskml@centurytel.net Internet: http://www.lacrosseareaceliacs.org/ Madison - Support Group Group: Madison Area Gluten Intolerance Chapter (MAGIC) Contact: Dan Roeske E-mail: president0002@glutenfreemadison.org Marshfield - Support Group Marshfield Celiac Support Group Contact: Marshfield Clinic Nutrition Services Tel: (715) 387-5480 E-mail: carolasher46@gmail.com Milwaukee - Support Group Milwaukee Sprue Crew Contact: Bev Lieven Tel: (414) 354-2354 E-mail: milcs@aol.com
  6. Celiac.com 07/23/2022 - With the aim of harnessing science to improve the quality of life of celiac sprue patients, in 2002 my colleagues and I started the non-profit Celiac Sprue Research Foundation. The first challenge the Foundation undertook was arguably the most ambitious—to translate available knowledge about celiac sprue pathogenesis into a comprehensive plan for developing therapeutic alternatives to the complete and lifelong gluten exclusion diet. Two years later this remains the primary goal of the Celiac Sprue Research Foundation, one that we continue to pursue with vigor and commitment. This article will review the current status of the Foundation’s frontrunning drug development project aimed at developing an oral enzyme pill to protect a celiac from the toxic effects of gluten. This effort was initiated based on results reported in two publications in 2002 (Hausch et al, Am. J. Physiol. 283, G996- G1003, 2002; and Shan et al, Science 297, 2275-2279, 2002). In essence those papers proposed that: (i) Among dietary proteins, gluten is unusual because it is especially difficult to break down completely into nutritionally useful amino acids. Indeed, some incompletely digested products of gluten persist in the human gut for an exceptionally long time; (ii) In most humans, this does not present a problem. However, in celiac sprue patients, digestive resistance of gluten is problematic because the residual products induce an inflammatory response; and (iii) A specific type of enzyme called prolyl endopeptidase (PEP) can mitigate this problem by accelerating the destruction of toxic products generated as a result of incomplete gluten digestion. Since the publication of those initial findings, a series of increasingly complex studies have been performed to assess the validity of the proposals described above. The findings of these studies have either been recently published or are being prepared for publication in peer-reviewed scientific journals. Below I summarize key results from three recently published papers that, in aggregate, lend considerable support to the hypothesis that a PEP pill may indeed be an effective way to treat celiac sprue. 1) Piper, J.L., Gray, G.M., and Khosla, C. Effect of prolyl endopeptidase on digestive-resistant gliadin peptides in vivo. Journal of Pharmacology and Experimental Therapeutics. In press. (E-Publication available online through PubMed). This work was part of the doctoral thesis of my former student Justin Piper at Stanford University. Using a challenging procedure pioneered by Gary Gray, Justin investigated the digestive resistance of a panel of gluten peptides in live rats (Yes, when it comes to the digestive system, rats are indeed very similar to us!). This panel of gluten peptides was chosen to reflect the diversity of opinions different scientists have regarding how gluten triggers the disease. Remarkably, but perhaps not surprisingly, nearly all of these potentially problematic peptides were highly resistant to breakdown in the rat gut. By contrast, the most stable product of myoglobin (a nutritionally important protein from meat) was rapidly and completely digested. Justin then went on to investigate the effect of PEP on the breakdown of one of the least digestible gluten peptides. He observed that, when therapeutically reasonable quantities of PEP were dosed in the rat gut, virtually all of this toxic peptide could be destroyed in less than 10 minutes. 2) Shan, L., Marti, T., Sollid, L.M., Gray, G.M., and Khosla, C. Comparative biochemical analysis of three bacterial prolyl endopeptidases: Implications for celiac sprue. The Biochemical Journal In press. (E-Publication available online through PubMed) This work was pursued in collaboration between Lu Shan, a doctoral student in my lab at Stanford University, and Thomas Marti, Maribeth Evelyn Lynn Research Fellow at the Celiac Sprue Research Foundation. Most of our studies thus far have utilized a PEP from the bacterium Flavobacterium meningosepticum. While this PEP has many attractive features, it did not evolve to break down gluten, and is by no means a perfect solution for the problem at hand. As we learn more about how gluten triggers celiac sprue, we believe we can do a much better job of designing an optimal enzyme drug. With this in mind Lu and Thomas set about comparing the properties of three naturally occurring PEPs. They found many similarities and differences, suggesting that, in the long term, it may be possible to recombine the good features from different enzymes into a single mousetrap. In the near term, however, they were able to work around a major problem with the Flavobacterium enzyme—its high cost. Specifically, they identified a PEP from an unrelated bacterium, Myxococcus Xanthus, that appears to be comparable to the Flavobacterium PEP in all respects but is substantially cheaper to produce. Assuming further studies can confirm this equivalence, we expect to use the Myxococcus enzyme in future animal and human testing. 3) Marti, T., Molberg, O., Li, Q., Gray, G.M., Khosla, C., and Sollid, L.M. Prolyl endopeptidase mediated destruction of T cell epitopes in whole glutenChemical and immunological characterization. Journal of Pharmacology and Experimental Therapeutics In press. (E-Publication available online through PubMed) This study was a collaborative effort between scientists at the Celiac Sprue Research Foundation and the University of Oslo. As is well known, grocery store gluten is an extremely complex substance consisting of literally hundreds of proteins. Prior to this study, all of our investigations focused on individual proteins from gluten or smaller pieces (peptides) derived from individual proteins. Consequently, demonstrating that our key conclusions also apply to grocery store gluten represented a major milestone. To do so, Thomas Marti and Qing Li at the Celiac Sprue Research Foundation developed a procedure that reliably mimics in a test-tube the effects of the digestive system on grocery store gluten. These test-tube procedures were then used to analyze the composition of residual gluten before and after PEP treatment. They showed that nearly all of the toxic peptides that could be identified in untreated gluten were eliminated from PEPtreated gluten. To verify the relevance of this observation, they teamed up with Oyvind Molberg at the University of Oslo, who had isolated a panel of gluten-responsive T cells from the small intestines of 14 celiac sprue patients. In a pivotal experiment, Molberg showed that PEP-treated gluten samples had dramatically reduced toxicity towards T cells from 12 out of 14 patients. Thus, to the extent the Oslo procedure accurately reflects the primary cause of gluten toxicity in celiac sprue patients, it appears that PEP may indeed be able to render grocery store gluten safe for celiac sprue patients. In summary, a considerable body of additional laboratory evidence has emerged over the past two years in support of the potential utility of an oral PEP enzyme as a therapeutic alternative to total gluten exclusion for celiac sprue patients. For those of you who are inclined, I encourage you to download the above papers, and assess the data for yourself. Regardless of your scientific inclinations however, it is also important to understand what has not yet been accomplished and what remains to be done. Thus far, to our knowledge, no studies of PEP have been conducted in humans. Doctors at the Celiac Sprue Research Foundation have recently completed a preliminary study aimed at determining whether gluten can be rendered harmless for celiac sprue patients by treatment with PEP outside the body. The results from that study, which could further bolster the case for enzyme therapy, are being analyzed, and will be published in due course. However, even if those results are encouraging, it is not the same as dosing a patient orally with the PEP enzyme with the intention of detoxifying ingested gluten. An initial study of that nature requires several hundreds of thousands of dollars (primarily for production of clinical-grade enzyme pills and for testing the safety of these pills in laboratory animals). A funding source for this effort has not yet been identified. Meanwhile, more could be done to improve the quality of the enzyme pill, so as to maximize its chances for success in clinical trials. Finally, estimating the maximum dose of gluten that could be safely tolerated by a celiac in conjunction with an enzyme pill is also a major unanswered question that lies ahead of us. While celiacs may fantasize about going to a pizza parlor armed with a wonder drug, a more realistic goal for a first-generation therapeutic agent would be to take the worry out of a celiac’s daily life by enabling the patient to cope with modest quantities of gluten that seem to be all around us without the blatant garb of a hamburger bun or pizza slice. I hope that the above progress report helps you understand that, while much remains to be done to develop a safe and effective therapy for celiac sprue, excellent progress is being made. My sincere thanks to all of you who have donated to the Celiac Sprue Research Foundation, without which none of this would have been possible. I trust that, thus far, we have kept the faith.
  7. Celiac.com 04/26/2022 - Celiac disease research, diagnosis, support and treatment just got a big shot in the arm with the launch of Stanford's new Center for Pediatric Inflammatory Bowel Disease (IBD) and Celiac Disease. Made possible by a $70 million gift from an anonymous donor, the center aims to make a major contribution to improving the lives of young patients who suffer from inflammatory bowel and celiac disease. Because many kids with IBD and celiac disease need comprehensive and dedicated care to get the best results, the new center will unite expert clinicians, researchers, IBD and celiac disease nurses, dietitians, psychologists, and social workers, to offer world-class clinical care for kids with IBD and celiac disease. In addition, the center will provide treatment for Crohn’s disease, ulcerative colitis, indeterminate colitis and very-early-onset IBD. To meet the wide-ranging care needs of children across the spectrum of IBD and celiac disease severity, the center will work closely with top pediatric specialists in a number of areas, including advanced endoscopy, surgery, pain management, mental health, nutrition and integrative medicine at Stanford. Researchers and clinicians will work with Stanford Medicine scientists in microbiome science, human immunology, genetics, epithelial biology, biomedical engineering and data science to explore the origins of IBD and celiac disease in children, improve drugs, and help develop new treatments. One advantage of this approach is that the "collaboration with expert clinical immunologists and geneticists enables us to provide advanced diagnostic and treatment options to children with IBD and celiac disease disorders that do not respond to standard treatment,” said Center director, Dr. Michael J. Rosen. Dr. Rosen describes the center as the “...nation’s destination center for innovation in pediatric IBD and celiac disease care, as well as a major research hub for these conditions,” adding that the center's joint services "will give children from birth to age 22 the best chance to live full and productive lives,” Dr. Rosen said. In addition to being a pediatric gastroenterologist at Stanford Children’s Health, Dr. Rosen is also the Stanford University Endowed Professor for Pediatric IBD & Celiac Disease. Experts in the center will also work to speed up knowledge of these chronic diseases, collect and share data, and synchronize approaches to improve diagnosis and treatment. This collaborative approach can help the center to "personalize treatment, curate biospecimens and patient-reported outcomes data for the world’s investigators and develop clear guidance on which drugs are safest and most effective for each child,” adds Dr. Rosen. For more information, check the website for the Center for Pediatric IBD and Celiac Disease Read more at Stanford.edu

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  9. Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet. Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including: Finding "fun" gluten-free treats for kids Menu ideas for school lunches, quick dinners, and sports snacks Helping the kids to take responsibility for reading labels, cooking and planning/preparing food How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere Halloween, Easter, and other special days - how do we include our kids safely? Educating day-care providers and teachers - without burdening them Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids Ensuring our kids won't cheat, and what to do WHEN they do Sending kids away to camp, friends' houses, and other times when we're not around to help The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more) Visit their site at: https://www.raisingourceliackids.org/ R.O.C.K. Chapters in the United States Alabama Support Group - Mobile Contact: Marilyn Taylor ROCK’n Mobile, Alabama Tel: (251) 633-3528 E-mail: Taylor6211@bellsouth.net Slocomb - Support Group Contact: Nichole Alexander E-mail: mamma_hen3@hotmail.com Tel: (334) 886-7150 Alaska Chugiak - Support Group Raising Our Celiac Kids (R.O.C.K.) - ROCK'n Alaska Contact: Debbie Saddler Chugiak, AK 99567 Tel: (907) 688-6879 E-mail: alaskadebbie@gmail.com Arizona Gilbert - Support Group Raising Our Celiac Kids (R.O.C.K.) - Gilbert Chapter Contact: Deanna Frazee Gilbert, AZ Tel: (480) 641-8821 E-mail: deannafrazee@hotmail.com Phoenix - Support Group Greater Phoenix R.O.C.K. Contact: Lisa Potts Email: phoenixceliackids@gmail.com FB Page: facebook.com/PHX.ROCK Phone: (858) 442-5956 E-mail: lisa.potts4911@gmail.com Internet: www.phoenixrock.org Tucson - Support Group Raising Our Celiac Kids (R.O.C.K.) - Tucson Chapter Contact: Liz Attanasio Tel: (520) 877-9181 Tucson - ROCK'n Tucson Contact: Shelli Hanks Tucson, AZ 85750 Email: TucsonROCK@comcast.net Tel: (520) 577-0774 Arkansas Fayetteville, AR Melanie Faught Fayetteville, AR 72704 Tel: (479) 582-9232 E-mail: melaniefaught@cox.net California Conejo Valley - Support Group ROCK'n Conejo Valley Contact: Melissa Riches Westlake Village, CA 91361 Tel: (818) 706-0197 E-mail: melissa.riches@sbcglobal.net Danville - Support Group Contact: Ann Reigelman Raising Our Celiac Kids (R.O.C.K.) - Danville Chapter Danville, CA E-mail: areigelman@yahoo.com Lake Balboa - Support Group Contact: Melissa Gray Raising Our Celiac Kids (R.O.C.K.) - Lake Balboa Chapter Tel: (818) 510-0534 E-mail: Melissagray808@gmail.com Los Angeles - Support Group Contact 1: Amy Harley Tel: (818) 249-2432 E-mail: harleyhome@earthlink.net Contact 2: Cheryl Cohen Tel: (818) 784-4516 E-mail: cohencheryl@yahoo.com Moreno Valley - Support Group Contact: Kellee Shearer Raising Our Celiac Kids (R.O.C.K.) - Moreno Valley Chapter 10034 Snipe Circle Moreno Valley, CA 92557 Tel: (951) 242-8448 E-mail: Treshearer@aol.com Orange County - Support Group Contacts: Randi Leinen Raising Our Celiac Kids (R.O.C.K.) - Orange County Chapter E-mail: RMLeinen@aol.com ROCK’n Orange County, CA Contact: Drew Grant Tel: (949) 257-6349 E-mail: orangecountyrock@gmail.com Palo Alto - Support Group Contact: Kelly Velez or Debbie Duncan Bay Area ROCK E-mail: kellyvelez@comcast.net Tel: (650) 303-8409 E-mail: debbie@debbieduncan.com Tel: (650) 494-6959 San Diego - Support Group Raising Our Celiac Kids (R.O.C.K.) - San Diego Chapter Contact: Brenda McDowell E-mail: sdrockchapter@gmail.com San Francisco - Support Group Contact: Lisa Palme Raising Our Celiac Kids (R.O.C.K.) - San Francisco Chapter E-mail: palmer@smccd.net Sebastopol - Support Group ROCK North Bay Chapter Contact: Jennifer Iscol Sebastopol, CA 95472 Tel: (707) 824-5830 E-mail: iscol@aol.com Visalia (Central) - Support Group Contact: Shannon Williams Tel: (559) 741-1671 Visalia, CA Colorado Peyton - Support Group ROCK’n Peyton, CO Crystal Brauer Tel: (719) 494-8590 E-mail: Brauer.family@yahoo.com Connecticut Raising Our Celiac Kids (R.O.C.K) Fairfield County CT Contact: Karen Loscalzo/ Monika Lazaro/ Carolyn Caney E-mail: rockfairfieldcounty@gmail.com Internet: www.ROCKFairfieldCounty.com Simsbury - Support Group Raising Our Celiac Kids - R.O.C.K. - Simsbury Chapter Contact: Mark & Tracy Saperstein Tel: (860) 651-4857 E-mail: mtbahs@comcast.net Waterford - Support Group Raising Our Celiac Kids - R.O.C.K. - Waterford Chapter Contact: Donna Kensel Waterford, CT E-mail: CtCeliacKids@aol.com Florida Apopka - Support Group Contact: Deborah Pfeifle Raising Our Celiac Kids (R.O.C.K.) - Apopka Chapter Apopka, FL 32712 Tel: (407) 880-6104 E-mail: dpfeifle@earthlink.net Coral Springs/Palm Beach - Support Group Contacts: Janna Faulhaber and Stacey Galper Raising Our Celiac Kids (R.O.C.K.) - Coral Springs/Palm Beach Chapter Tel: (954) 255-7855 E-mail: Staceynagel@paxson.com Odessa (Tampa) - Support Group Contact: Terri Willingham Raising Our Celiac Kids (R.O.C.K.) - Odessa Chapter Orlando - ROCK'n Celebration - Support Group Contact: Rose Parvaz Celebration, FL 34747 E-mail: rose.parvaz@celebration.fl.us Palm Beach gardens - Support Group ROCK'n Palm Beach Gardens Contact: Kimberly Wade Palm Beach Gardens, FL 33418 E-mail: tkcrw@comcast.net Tel: (561) 625-9005 Tampa - Support Group Contact: Melissa Ransdell Raising Our Celiac Kids (R.O.C.K.) - Tampa Chapter 14521 Nettle Creek Rd. Tampa, FL 33624 Tel: (813) 265-8105 Georgia Atlanta - Support Group Contact: Jeff Lewis, M.D. Children's Center for Digestive Health Care Raising Our Celiac Kids (R.O.C.K.) - Atlanta Chapter E-mail: jlewis@ccdhc.org Illinois Chicago - Support Group ROCK'n Chicago Contact: Alexandra Vavouliotis Tel: (847)-962-7244 E-mail: alexvav24@mac.com Dekalb - Support Group Contact: Audrey O'Sullivan Raising Our Celiac Kids (R.O.C.K.) - Stillman Valley Chapter Dekalb, IL Tel: (815) 756-2606 E-mail: Audrey08@aol.com ROCKn DuPage & Cook County Aleksandra de Leon -DuPage County E-mail: aleksandra.deleon@gmail.com Tel: 630-745-7429 Ilene Harris- Cook County E-mail: isf27@yahoo.com Tel: 847-222-9950 Moline - Support Group Contact: Lesley Lamphier ROCK'n Illinois (Moline) Moline, IL 61265 Tel: (309) 736-1507 E-mail: celiackids@mchsi.com Springfield - Support Group Land of Lincoln Celiac Support Group Contact: Joyce Hall Raising Our Celiac Kids (R.O.C.K.) - Springfield Chapter Springfield, IL Washington - Support Group Heart of Illinois Celiac Kids Contact: Samantha Young E-mail: info@hoiceliackids.com Indiana Henryville - Support Group Contact: Kristie Williams ROCK'n Indiana (Henryville) Henryville, IN 47126 Tel: (812) 294-1179 E-mail: kristiewilliamsrn@hotmail.com Indianapolis - Support Group Contact: Kelly Kurzhal ROCK’n Indianapolis Indianapolis, IN 46217 Tel: (317) 697-4933 E-mail: kellykurzhal@hotmail.com Mooresville - Support Group Contact: Cindy Holder Raising Our Celiac Kids (R.O.C.K.) - Mooresville Chapter 375 E. Countyline Rd. Mooresville, IN 46158 Tel: (317) 831-9871 E-mail: Holders2@comcast.net Iowa Des Moines - Support Group Contact: Lindsay Amadeo Raising Our Celiac Kids (R.O.C.K.) - Des Moines Chapter Des Moines, IA E-mail: llamadeo@yahoo.com Maryland ROCK'n Maryland Contact: Steffani Mykins Tel: (410) 626-1958 E-mail: stfine@comcast.net ROCK’n Maryland Contact: Lindsay Moe Mt. Airy, MD 21771 (443) 799-3432 E-mail: lindsaymoe@ymail.com Massachusetts Longmeadow - Support Group ROCK'n MA Contact: Christie Freda Longmeadow, MA 01106 E-mail: cfreda126@comcast.net Tel: (413) 567-5748 Somerset - Support Group Contact: Stacey Nasrallah ROCK'n Somerset (MA) Somerset, MA 02726 Tel: (508) 674-6211 E-mail: info@somersetrock.org Internet: http://www.somersetrock.org Michigan Ann Arbor - Support Group Contact: Anne MacDougald ROCK’n Michigan E-mail: anniemacdougald@gmail.com Macomb Township - ROCK'n MI Support Group Contact: Kimberly Fanelli Macomb Township, MI 48044 Tel: (586) 226-8480 E-mail: kfanelli@mac.com West Bloomfield - Support Group Contact: Gail Smoler Raising Our Celiac Kids (R.O.C.K.) - West Bloomfield Chapter 4358 Strathdale Court West Bloomfield, MI 48323 Tel: (248) 851-9451 E-mail: GailS63@aol.com Minnesota Minneapolis/St. Paul Support Group Contact: Lynda Benkofske Raising Our Celiac Kids (R.O.C.K.) - ROCK-Minneapolis/St. Paul Chapter E-mail: twincitiesrock@gmail.com Mississippi Columbia - Support Group Contact: Beth Broom Raising Our Celiac Kids (R.O.C.K.) - South Mississippi Chapter 50 Wilks Road Columbia, MS 39429 E-mail: sbroom@dixie-net.com Missouri O'Fallon - Support Group Contact: Beth Anne Miller 7264 Sweetcider Lane O'Fallon, MO 63366 Tel: (636) 294-2037 E-mail: Frankbethm@aol.com Montana Billings - ROCK'n Montana Support Group Billings, MT 59102 Contact: Perrin Grubbs E-mail: perrin@bresnan.net Tel: (406) 655-7897 Nevada Reno - Support Group Contact: Carrie Owen Raising Our Celiac Kids (R.O.C.K.) - Reno Chapter Tel: (775) 857-2708 E-mail: Renorockgroup@yahoo.com New Hampshire Manchester - Support Group Contact: Michelle Ouellette ROCK'n New Hampshire Manchester, NH 03102 Tel: (603) 627-1831 E-mail: rocknh2006@gmail.com New Jersey Blairstown - Support Group Contact: Marla Benson Raising Our Celiac Kids (R.O.C.K.) - Blairstown Chapter Blairstown, NJ MBenson890@aol.com (808) 362-7752 Freehold - Support Group Contact: Elissa Carlin Raising Our Celiac Kids (R.O.C.K.) - Freehold Chapter Marlboro, NJ 07746 Tel: (732) 252-8309 E-mail: ElissaC75@aol.com Morristown - Support Group ROCK'n New Jersey Contact: Andrea Kitzis Smith Morristown, NJ 07960 Tel: (201) 965-7309 E-mail: akitsm@att.net Short Hills - Support Group Contact: Ellie Fried Raising Our Celiac Kids (R.O.C.K.) - North Jersey Chapter Tel: (973) 912-0253 New Mexico Albuquerque - Support Group Contact: Traci Shrader Tel: (505) 450-1156 E-mail: tashrader@msn.com New York Auburn - Support Group R.O.C.K.'n Auburn Contact: Nicki Hai Tel: (315) 252-2764 E-mail: jnhai@roadrunner.com Glens Falls Region - Support Group Contact: Lisa Fox Lake George, NY 12845 Tel: (518) 668-5838 E-mail: fox_lisa@hotmail.com ROCK’n Hudson Valley, NY Contact: Terresa Bazelow Thompson Ridge, NY Tel: (845) 609-7432 E-mail: HVNYROCK@aol.com Nassau County- Support Group Contact: Angela Silverstein Raising Our Celiac Kids (R.O.C.K.) - Lynbrook Tel: (516) 593-2904 E-mail: venusangmm1@optonline.net Nassau/Suffolk - Support Group Contact: Randi Albertelli Raising Our Celiac Kids (R.O.C.K.) - Long Island Chapter E-mail: rsquared31@optonline.net Contact 2: Jill Schneider Tel: (516) 551-4564 E-mail: jahms@verizon.net Rockland, NY - Bergen, NJ Raising Our Celiac Kids (R.O.C.K.) - Rockland, NY - Bergen, NJ Chapter Contact: Gabrielle Simon Telephone: (646) 342-6960 Email: nynjrockmom@yahoo.com Rome - Support Group Mohawk Valley R.O.C.K. (upstate New York) Contact: Rebecca Madeira Rome, NY Tel: (315) 337-7671 Upstate - Support Group ROCK'n Upstate New York Contact: Karen Dorazio Jamesville, NY 13078 Tel: (315) 469-8154 E-mail: kdorazio@twcny.rr.com Vestal, NY ROCK’n Vestal, NY Contact: Razi Lissy E-mail: raziher@gmail.com Western New York - Support Group Raising Our Celiac Kids (R.O.C.K.) - Western New York Chapter Buffalo / Niagara Falls NY Contact: Jeanette Yuhnke Tel: (716) 625-8390 Internet: http://www.glutenfreeinwny.com/WNYCeliacKids.php Westchester, NY ROCK’n Westchester, NY Contact: Erica Peltz E-mail: Eps2104@gmail.com Tel: (917) 612-4676 North Carolina Charlotte, Support Group Contact: Nikki Everett Raising Our Celiac Kids (R.O.C.K.) - Charlotte Chapter Huntersville, NC 28078 Tel: (704) 804-4090 E-mail: haircolorexpertise@hotmail.com Harrisburg - Support Group Contact: Linda Witherspoon 5018 Wynford Ct. Harrisburg, NC 28075 Tel: (704) 957-6100 E-mail: Linda.witherspoon@aol.com Stantonsburg - Support Group ROCK’n North Carolina Contact: Carrie Forbes Stantonsburg, NC 27883 Tel: (252) 238-3132 E-mail: gingerlemongirl@gmail.com North Dakota Fargo - Support Group Contact: Stacey Juhnke Tel: (701) 237-4854 E-mail: DSJuhnke@yahoo.com Ohio Akron - Support Group Contact: Sue Krznaric Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter Akron, OH Tel: (330) 253-1509 E-mail: skrznaric@cs.com Akron - Support Group Contact: Therese Semonin Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter CSA Chapter 111, S.O.S. Save Our Stomachs Cincinnati - Support Group Contact: Beth Koenig Raising Our Celiac Kids (R.O.C.K.) - Cincinnati Chapter Cincinnati, OH E-mail: BethKoenig@cinci.rr.com Tel: (513) 923-4435 Cleveland - Support Group ROCK’n Cleveland Contact: Tracey Lavine Solon, OH 44139 Tel: (216) 533-1285 E-mail: Tracey95@aol.com Toledo - ROCK'n Toledo Support Group Contact: Amy Kinkaid Toledo, OH 43615 E-mail: kinkaida@bex.net Tel: (419) 509-6913 Oregon Salem - Support Group Contact: Kristen Klay Raising Our Celiac Kids (R.O.C.K.) - Salem Chapter Tel: (503) 581-3884 E-mail: kristenklay@yahoo.com Pennsylvania Greenville - Support Group Contact: Fiona Garner Raising Our Celiac Kids (R.O.C.K.) - Greenville Chapter Greenville, PA Glenside - Support Group Raising Our Celiac Kids (R.O.C.K.) - Glenside Contact: Wilhelmina Green Glenside, PA 19038 Tel: (215) 756-2708 E-mail: Wilhelmina.green@gmail.com Greensburg - Support Group Contact: Martin Martinosky, Jr. Raising Our Celiac Kids (R.O.C.K.) - Greensburg Chapter Greensburg, PA Tel: (724) 834-3435 E-mail: ROCKchapter@aol.com Hanover - Support Group ROCK’n Hanover Contact: Melissa Panzer Hanover, PA 17331 Tel: (717) 633-1667 E-mail: Glutenfree4life@live.com Harrisburg - Support Group Gluten Intolerance Group of Harrisburg Harrisburg, PA Tel: (717) 520-9817 Lancaster/York - Support Group Contact: Janelle Gregory Tel: (717) 687-8586 E-mail: janellegregory@verizon.net Lansdale - Support Group ROCK Bucks Montgomery Contact: Holly and Steve Staugaitis Lansdale, PA 19446 Tel: (215) 997-2706 E-mail: hollystaugaitis@gmail.com South Carolina Charleston - Support Group Contact: Cathy Leeke Lowcountry R.O.C.K. Tel: (678) 637-3277 E-mail: cwleeke@yahoo.com Clover - Support Group Contact: Lauretta McInnis Raising Our Celiac Kids (R.O.C.K.) - Clover Chapter Tel: (803) 222-5143 E-mail: laurettamcinnis@gmail.com Easley - Support Group Contact: Laura Armstrong Raising Our Celiac Kids (R.O.C.K.) - Easley Chapter Easley, SC Tel: (864) 850-0344 Lexington - Support Group Contact: Gail Fox Raising Our Celiac Kids (R.O.C.K.) - Lexington Chapter Lexington, SC 29072 Tel: (803) 957-7658 E-mail: gailfox@sc.rr.com Tennessee Nashville - Support Group Contact: Janet Lowery Raising Our Celiac Kids (R.O.C.K.) - Nashville Chapter Tel: (615) 758-2674 Woodlawn - Support Group Contact: Shantal Green Woodlawn, TN Tel: (931) 648-2289 Texas Austin - Support Group Contact: Frances Kelley ROCK'n Austin - Alamo Celiac GIG Austin, TX 78739 E-mail: fkelley@austin.rr.com Tel: (512) 301-2224 Dallas/FortWorth - Support Group Contact: Kelly LeMonds, Leader Raising Our Celiac Kids (R.O.C.K.) - Wylie Chapter 1821 Spinnaker Way Drive Wylie, Texas 75098-7855 Tel: (972) 442-9328 E-mail: leader@dallasrock.org Internet: http://www.dallasrock.org Dallas/FortWorth - Support Group Contact: Diane McConnell Raising Our Celiac Kids (R.O.C.K.) - Dallas/FortWorth Chapter Tarrant County, TX Tel: (817) 849-8646 E-mail: fortworthrock@swbell.net Houston - Support Group Contact: Janet Y. Rinehart, Chairman Houston Celiac Sprue Support Group Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 13722 Ashley Run Houston, TX 77077-1514 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Internet: http://www.csaceliacs.org/ Houston - Support Group Contact: Faye Sallee Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 14830 Sagamore Hills Houston, TX 77082 Tel: (281) 496-9166 Houston - ROCK'n Houston Support Group Comtact: Monica Ryan Houston, TX 77025 Tel: (713) 667-1963 E-mail: Mwryan@ipa.net Lubbock - Support Group Contact: Beth Trostle ROCK'n Lubbock Tel: (806) 794-5917 E-mail: calvintrostle@nts-online.net Victoria - Support Group Contact: Julie Bauknight Raising Our Celiac Kids (R.O.C.K.) - Victoria Chapter Victoria, TX 77901 Tel: (361) 572-9252 Utah Holladay - Support Group Contact: Cathy Snowball ROCK’n Utah Holladay, UT 84121 E-mail: kileyannsmom@hotmail.com Ogden - Support Group Contact: Eileen Leatherow Raising Our Celiac Kids (R.O.C.K.) - Ogden Chapter Ogden, UT Virginia Ashburn - Support Group Keith Bird Tel: (703) 348-7607 rock@birdmk1.plus.com Bristow - Support Group ROCK’n Bristow Contact: Michael and Elizabeth Brown Bristow, VA 20136 Tel: (703) 753-9161 E-mail: 2xx1xy@comcast.net Fredericksburg - Support Group ROCK’n Fredericksburg Contact: Kathy Paz-Craddock Tel: (703) 507-0609 E-mail: kalalilys@gmail.com Paeonian Springs - Support Group Raising Our Celiac Kids (R.O.C.K.) - Paeonian Springs Becky Shore Tel: (571) 252-0036 E-mail: zoo2u@comcast.net Virginia Beach - Support Group Contact: Cynthia Olson E-mail: glutenfreemom@hotmail.com Washington Bellingham - Support Group Contact: Jean McFadden Layton ROCK'n Washington Bellingham, WA 98229 Tel: (360) 734-1659 E-mail: glutenfreekids@yahoo.com Bothell, WA - Support Group Contact: Lynn Crutcher Rock'n Washington Bothell, WA 98011 Tel: (425) 205-1327 E-mail: gfkids1@yahoo.com Poulsbo - Support Group Contact: Tim & Dawn Simonson Raising Our Celiac Kids (R.O.C.K.) - Poulsbo Chapter Poulsbo, WA 98370 Tel: (360) 779-9292 E-mail: timsimonson@csi.com Seattle - Support Group Contact - Irina Risuhina Raising Our Celiac Kids (R.O.C.K.) - Seattle Chapter E-Mail: iris510@hotmail.com Spokane - Support Group Contact: Jennifer Fancher ROCK'n Spokane, WA Spokane, WA Tel: (509) 891-7250 E-mail: nelsonfancher@live.com Vancouver - Support Group Contact: Theressa Rachetto Vancouver, WA 98662 Tel: (360) 713-1504 E-mail: theressarachetto@gmail.com Yakima - Support Group ROCK’n Yakima, WA Contact: Shanta Gervickas Tel: (509) 965-1130 E-mail: Shanta@network7.com West Virginia Hurricane - Support Group Contact: Karen Daniel Raising Our Celiac Kids (R.O.C.K.) - Hurricane Chapter 340 Green Acres Dr. Hurricane, WV 25526 Tel: (304) 757-0696 E-mail: krdaniel@suddenlink.net Wisconsin DePere - Support Group Contact: Pam Rourke Tel: (920) 339-7867 E-mail: mrourke@new.rr.com Jackson - Support Group Contact: Yvonne Schwalen Raising Our Celiac Kids (R.O.C.K.) - Jackson Chapter E-mail: trainman280@netzero.net R.O.C.K. Chapters in Canada Alberta ROCK 'n Olds Olds, Alberta, Canada Amy Smart 403-415-5789 asmart@telus.net
  10. The Gluten Intolerance Group of North America, also known as GIG, is a 501©(3) non-profit organization funded by private donations including the Combined Federal Campaign, United Way Designated Giving, Employer Matching Funds; proceeds from memberships, the sale of products and our educational resources. We rely on your contributions, which are tax deductible. 85% or more of our revenue is used to support our programs. GIG is at the forefront of innovative action and is respected globally as a powerful leader in the celiac community. GIGs volunteers, staff, and Board are knowledgeable and our materials and resources are credible. Our Mission is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, in order to live healthy lives. GIG Branches help to fulfill GIGs mission on a local and regional level through programs tailored to their community. GIG VISION The vision of the Gluten Intolerance Group of North America is one of mutual support, acceptance, and respect for all persons living with gluten intolerances and working with this community. GIG envisions a united gluten intolerant community in which all persons feel they are healthy, are positively nurtured to live life to the fullest, and are involved and contributing citizens. GIG PROGRAMS FULFILLING THE MISSION GIG fulfills its mission of supporting persons living with gluten intolerances through programs directed to consumers, health professionals and the public. GIGR programs provide: Support and education Awareness and advocacy Research awareness and support GIG is dedicated to providing accurate, scientific, evidence-based information. Cynthia Kupper, RD, celiac disease, Executive Director 31214 - 124 Ave SE Auburn WA 98092 Phone: 253-833-6655 Fax: 253-833-6675 Web sites: www.gluten.net; www.GFCO.org; www.GlutenFreeRestaurants.org Email: info@GLUTEN.net
  11. The National Celiac Association remains dedicated to the mission of supporting, educating and advocating for individuals with celiac disease and non-celiac gluten sensitivity, their families and communities across the nation. Our grassroots approach hasn’t changed in the 24 years we have been serving the community. Wherever you may reside, you matter to us and we are here to help you! We welcome support groups who would like to team up with us to provide education and support on a local level. Over 70 support groups and former CSA chapters are in the process of joining our team and more would be wonderful. Together our outreach will be both nurturing and empowering. Executive Director Lee Graham Web site: https://www.nationalceliac.org
  12. Celiac.com 11/12/2019 - People with celiac disease know that the battle to remain gluten-free requires constant vigilance, and most are thankful for any help they can get along the way. Still, most help is limited and scattershot. Ever wonder what it would look like for a town or city to help people with celiac disease and gluten intolerance to have a normal social life? Well, it might look a bit like a plan unveiled recently by the City Council of Seville, Spain as part of a new health and welfare campaign designed to provide comprehensive information on gluten-free food options within Seville. Promoted by the Department of Public Health, and presented by the Department of Public Health and its Delegation of Social Welfare, Employment and Comprehensive Plans for Social Transformation, the program, called Network Seville Gluten Free, aims to create and develop, and map, a network of catering establishments that offer gluten-free meals. The main goal is to improve the quality of life of celiac persons, both citizens and tourists to Seville, in terms of accessibility to food services, and thus to contribute to a more normal social life for those people. The program will begin by raising awareness, stimulating training, and promoting the creation of a network of hotels and establishments, can safely and reliably meet the needs of people with gluten intolerance. To help launch the initiative, representatives from four restaurants joined with the municipal delegate for Social Welfare, Employment and Comprehensive Social Transformation Plans of the City Council, Juan Manuel Flores, to sign protocols for joining to the Network. Stay tuned for more on this and related stories about celiac disease and gluten-free living. Read more at TheMayor.eu
  13. Hello all! I have celiac disease and am currently writing a research paper about designing a mobile app for supporting celiac disease patients. The goal of the app is to serve as a support system for the specific celiac patient. The app would be used by the patient and their circle of family and friends. The celiac disease patient would have to 'invite' their family members, friends, coworkers, etc. in order for them to have access to the app. The idea is the app would have information tailored to the preferences of the celiac disease patient. There are many apps to help you find gluten-free food (and personally I don't trust them very much because facilities change, ingredients change, every country has their own regulations, etc. so I prefer to do my own research and not rely on an app). This is why this new app would focus on the personal experience and preferences of each specific celiac patient. You know how we have to explain our disease to everyone and it feels like we've explained it 1000 times? How we have to think about where to go, where to eat and plan everything? Well, the app would help us explain our condition to our loved ones, and also provide ideas on how to support us with sections such as: >> Social support (understanding celiac disease, activities and socializing, dating, etc.) >> Emotional support >> Physical wellness (the benefits of meditation, exercise, etc.) >> Food (pre-approved -by us- restaurants, grocery list, favorite foods, etc.) Also, subsequent versions of the app would allow the inner circle of the celiac disease patient to provide new ideas for each section and these would have to be approved by the celiac disease patient to be published in the app. My ask is the following: I would love your input on the sections and subsections of the app. Thank you very much!!! ?
  14. Warm Greetings... I'm seeking support or advice, as well as some words from the wise. D-day has come: I'll receive my diagnosis in about 4 hours. I've known for a few months now that Celiac disease is likely the culprit to what ails me, so this isn't new news to me. I should feel relieved. Yet...I'm suddenly feeling sad, anxious, and overwhelmed. I've been soooo, soooo sick for over a year now (on top of having a very rare debilitating condition called Isaac Syndrome...AND other crud). I'm beyond ready to reclaim my life! Like every other one of you beautiful people who are part of this pristine community known as Celiacs, I went through a host of testing; the last of which was the endoscopy w/ biopsies. After said endoscopy [and whilst showing me pictures of my innards], the doctor informed me that I have celiac sprue and all sorts of other fun G.I. issues that I was completely oblivious to. He explained that in spite of the appearance of my duodenum, a Celiac diagnosis couldn't be affirmative until the biopsy results were in. Being one who always puts her infinite wisdom to good use (snicker, snicker), I decided to view my biopsy results online, reasoning that it would give me a chance to better prepare some questions for the specialist. Needless to say, that may be what cost me this night of sleep. I absolutely, positively have Celiac. I was perfectly fine knowing that this was a very high probability just yesterday. So why am I upset? I've had months to come to terms with this and be ready. Yet something about confirmation made me have what the docs may call an 'adverse reaction.' There's no logic behind this (my mental state of angst). Okay...now that you've made it this far, I pose the same question I entitled this post: If you could go back to the day you were diagnosed, what is some advice that you'd give to yourself, knowing now what you didn't know then? Any advice would be appreciated as I'm truly stressing out. Thank you! ~ Shann
  15. Celiac.com 08/15/2016 - On May 3rd, 2016, as part of an ongoing effort to learn more about celiac disease, the U.S. Preventive Services Task Force (USPSTF) released its first-ever draft recommendation statement, and draft evidence review. The statement basically says that there just isn't enough evidence to adequately weigh the benefits and harms of celiac disease screening in asymptomatic patients. This is an "I" recommendation that does not apply to patients with symptoms of celiac disease such as diarrhea, abdominal pain and unexplained weight loss. They basically call for "[m]ore evidence on screening for celiac disease…before the task force can recommend for or against screening people who don't have any signs or symptoms of the condition," said USPSTF member Alex Krist, M.D., M.P.H., in a news release. "In the face of unclear evidence, physicians should use their clinical judgment when deciding whom to screen," Krist added. The USPSTF pointed out that their future recommendations for screening patients would benefit from research into: The effectiveness of targeted screening in patients at increased risk for celiac disease The accuracy of serological markers in asymptomatic patients, particularly those with risk factors The effect of treatment of celiac disease in asymptomatic patients who have positive blood tests for celiac disease, and The clinical outcomes such as changes in health and quality of life in people who are screened versus people who are not screened Read more at: AAFP.ORG.
  16. Celiac.com 09/11/2014 - What’s the relationship, if any, between eosinophilic esophagitis (EoE) and celiac disease? Research studies have produced variable results. Researchers A. J. Lucendo, Á. Arias, and J. M. Teniaso recently set out to conduct a systematic review of medical literature to determine if there’s any evidence of a connection between both diseases. They used the MEDLINE, EMBASE and SCOPUS databases to conduct electronic searches with keywords relating to EoE and celiac disease. Depending on study heterogeneity, they used random-effects models as needed (I2). To assess publication bias, they used funnel plot analysis, along with the Begg–Mazumdar, Harbord and Egger tests. Their keyword search produced 197 significant study references; 30 were included in the quantitative summary, with most showing serious methodological inconsistencies. The team found significant publication bias in favor of short studies reporting positive connections between the two diseases. The prevalence of EoE in celiac patients ranged from 0% to 10.7% (I2 = 78.9%). Rates of celiac disease in EoE varied wildly, between 0.16% and 57.1% (I2 = 89%). One high-quality, prospective, randomly selected, population-based study showed a celiac disease rate of 1.1%, with no cases of EoE. Numerous quantitative summaries of celiac prevalence suffer from clinical and methodological differences. That is, they are are not similar enough to draw good conclusions. A gluten-free diet produced histological remission of EoE in 32.1% of celiac patients (95% confidence interval, 14.9–52.2%; I2 = 52.2%), which was similar to that expected for wheat elimination in EoE patients. There are not really enough valid studies to completely rule in or out a true association between EoE and celiac disease, currently available evidence does not support any such connection. In fact, the only epidemiologically valid study indicates that these diseases are not connected. Source: Alimentary Pharmacology & Therapeutics Alimentary Pharmacology & Therapeutics Volume 40, Issue 5, pages 422–434, September 2014. DOI: 10.1111/apt.12859
  17. As a person with an intolerance to wheat, barley, and other grains and products with gluten in them, I have sampled numerous vitamins and supplements over the years. One of the best I have ever taken is CeliAct. I am happy to say that this supplement has recently been reformulated and it is now better than ever. One of the biggest changes to CeliAct is the recommended dosage. The new serving size is 2 soft capsules a day compared to the former serving size of 6 large hard tablets taken two times a day. These old tablets were so big I had to cut them in half to take them - but that is no longer a problem because the new capsules are soft and very easy to swallow. This is a big improvement! There are several other significant changes to this supplement in terms of the ingredients, the amount per serving, and the percent of Daily Value (%DV) including increases in Vitamin D, Biotin and Zinc, as well as the addition of Folate and Magnesium Oxide. Another benefit of this supplement is that it provides 2 billion live cultures per serving of Bacillus Coagulans for intestinal health. If you have celiac disease and you plan on trying a supplement to help you feel better, I highly recommend CeliAct Gluten Free Diet Support. For more information visit: www.Celiact.com
  18. Celiac.com 10/19/2012 - Irish citizens with celiac disease will no longer be reimbursed for the gluten-free products they buy, under to a newly announced cutback to their health benefits. The Irish Pharmacy Union (IPU) says that new cuts to health benefits by the Irish health service (HSE) mean that many gluten-free products will no longer be reimbursed by the government, including products purchased by patients with medical cards, and those receiving long-term illness benefits. Gluten-free products that will no longer be covered include baking powder, breads, cornflakes, flour, muesli, pasta, pizza and porridge. People with celiac disease must eat gluten-free foods to avoid suffering from significant health problems. The IPU says this means that celiac patients, who rely on gluten-free products to maintain their health, will no longer receive financial support to help them cover the cost of these products. The HSE announced the controversial €130 million in cuts last spring, but made no mention that gluten-free products would be removed from the list of free items. The HSE announcement said only that 'certain products including' glucosamine, the obesity drug Orlistat, and Omega-3 Triglycerides to protect against heart disease, would be removed from the list of reimbursable products. In confirming the elimination of reimbursements for gluten-free products, an HSE spokesperson said that the agency was choosing to cut products for which there was 'doubt about their clinical efficacy.' What do you think? Are gluten-free products medically questionable for people with celiac disease? Let us know your thoughts by commenting below. Source: Irish Health
  19. Celiac.com 02/09/2011 - A new group focused on supporting children with celiac disease and non-celiac gluten intolerance will hold its first meeting this month, on February 19th, in Portland, Oregon. G.I.F.T.S. - Gluten Intolerant Families Teamwork & Support (www.gifts-pdx.org) will meet every other month, on the third Saturday, from 2:00 to 4:00 p.m. in the home of group moderator Wendy Cohan, RN. Meeting in a home environment will reduce costs for membership, but also offer the opportunity to hold cooking demonstrations, cupcake decorating contests, and a summer cook-out, all of which are planned for 2011. Each meeting will feature a speaker, with subjects alternating between short health discussions and more kid-friendly holiday themes and cooking and baking with children. Our first speaker will be Krista Anderson-Ross, ND, who will give a short talk on the important topic of "Nutritional Deficits in Children with Celiac Disease", and how best to address them. We'll follow that up in April with an Easter-themed party with our guest, small business owner of "Fairy Cakes". Our group website: www.gifts-pdx.org is full of information on celiac and gluten related topics, and it includes a bulletin board for sharing tips, recipes, ideas for school lunches and snacks and other parent peer-support ideas. Bring your child, bring your whole family, and help make this group whatever you want it to be. We have a small advisory committee of health professionals and parents of children with celiac disease, but you are welcome to bring your ideas to the table, literally. We plan to hold social gatherings and restaurant outings in addition to regular meetings. For more information, see the website, or email us: info@gifts-pdx.org.
  20. Celiac.com 05/17/2010 - Scott Adams and Ron Hoggan went on live radio last Saturday on the Love By Intuition Show with host Deborah Beauvais (Dreamvisions 7 Radio Network) in support of Celiac Disease Awareness Month. The show is broadcast live from Boston, MA on 1510 AM Revolution Boston, a progressive 50,000-watt station reaching 5 states locally, and on Energy Talk Radio in San Francisco, and it reaches over 1,000,000 listeners. The show will be re-broadcast several times and will hopefully reach many more listeners. The podcast is attached and can be downloaded or listened to from our server. Dreamvisions 7 Radio Network is holistic healing radio network with an eclectic group of radio hosts all with the common goal to help humankind by offering different modalities or programs combined with tools to bring awareness, joy and love to their listeners. Their vision is to continue to syndicate the Network of shows by having additional affiliates both terrestrial and Internet.
  21. Celiac.com 03/10/2010 - A team of researchers recently observed that monocytes differentiated with IL-15 support Th17 and Th1 responses to wheat gliadin. They discuss the implications of this discovery for celiac disease in a recent article in Clinical Immunology. The research team included K. M. Harris, A. Fasano, and D. L. Mann of the Pathology Department at the University of Maryland School of Medicine. It is understood that interleukin (IL)-15 contributes to the immuno-pathogenesis of celiac disease. However, the effect of IL-15 on APC that shape adaptive immune responses to gliadin is not well understood. Using PBMC from healthy individuals, the team demonstrated that monocytes differentiated with IL-15 (IL15-DC) produced IL-1beta, IL-6, IL-15, IL-23, TNFalpha and CCL20 in response to pepsin-trypsin digested gliadin (PTG) and activated contact-dependent Th17 and Th1 responses from autologous CD4(+) T cells. Compared with control subjects, PBMC from celiac disease patients showed lower concentrations of IL-15 augmented IFNgamma responses to PTG. So, by generating IL15-DC, IL-15 supports Th17 and Th1 responses to a dietary antigen that produces no such responses in healthy individuals.The team notes that IL-15 hypersensitivity may cause these potentially pathogenic immune responses to develop in celiac patients, but not in healthy individuals. They conclude that the pathogenesis of celiac disease is likely due in part to genetic and/or environmental factors that control IL-15 expression and responsiveness in the gut. Source: Clin Immunol. 2010 Feb 10.
  22. Celiac.com 03/19/2009 - Numerate Inc., a biotechnology company leveraging a novel drug engineering process to design lead-stage drug compounds, announced today it has received a Phase 1 grant from the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health (NIH). The Small Business Technology Transfer (STTR) award, entitled “Drug Engineering of Transglutaminase 2 Inhibitors,” will be used to support a research collaboration between Numerate and the laboratory of Chaitan Khosla, Ph.D., the Wells H. Rauser and Harold M. Petiprin Professor of Chemical Engineering and Chemistry at Stanford University. “This NIH Phase 1 STTR award validates the attractiveness of Numerate’s drug engineering process for the design of new small molecule drugs,” stated John Griffin, Ph.D., Numerate’s chief scientific officer and principal investigator of the project. “In addition, it recognizes the potential of transglutaminase 2 inhibitors for the treatment of Celiac Sprue. Professor Khosla is a leader in Celiac disease research, and we are pleased to have the support of the NIH in our collaboration with him and his laboratory.” Professor Khosla, who will serve as co-investigator for the STTR research project, added, “Transglutaminase 2 is central to the pathophysiology of Celiac Sprue, and offers a compelling target for a disease for which no pharmacotherapy currently exists. I look forward to having Numerate apply its breakthrough technology to this important problem.” Celiac Sprue, also known as celiac disease, is an autoimmune disorder of the small intestine involving intolerance to gluten proteins found in wheat and other grains. About Numerate Numerate is a privately held biotechnology company that has developed and extensively validated a drug engineering process that rapidly and cost-effectively delivers small molecule drug candidates optimized for efficacy, safety, and patentability. Numerate’s drug engineering process combines advances in computer science, statistics, and molecular modeling to address, in parallel, the factors that determine the success and failure of a drug. Numerate applies this proprietary process to design and develop small molecule therapeutics in collaboration with a variety of partners in the pharmaceutical and biotechnology fields. For more information, please visit www.numerate.com.
  23. Celiac Disease Foundation is the nation’s leading disease advocacy organization for celiac disease and non-celiac gluten/wheat sensitivity. We drive diagnosis, treatment, and a cure through research, education, and advocacy to improve the quality of life for all those affected. Through iCureCeliac®, our national registry dedicated to patient-centered research, we collaborate with researchers, clinicians, and industry to better understand, and ultimately cure, celiac disease. Since our founding in 1990, Celiac Disease Foundation continues to champion many battles: federal recognition of celiac disease and labeling standards for gluten-free foods, improved diagnostic tools, widespread patient and provider education, access to mainstream gluten-free products, and the need for better treatments and a cure. 20350 Ventura Blvd. Suite 240 Woodland Hills, CA 91364 Tel: (818) 716-1513 E-mail: cdf@celiac.org Internet: http://www.celiac.org
  24. The following letter was prepared by Nancy of the Gluten Intolerance Group in Seattle, WA: Directions: Find your representatives e-mail addresses at: http://www.house.gov/writerep/. Highlight the letter below with your mouse. Copy (Control-C) it to your notepad. Paste it (Control-V) into an e-mail to them, or into the e-mail form at the site above. Representative or Senator Address Honorable (Senator) Or Distinguished (Representative) I urge you to cosponsor the legislation that Representative Nita Lowey and Senator Edward Kennedy will introduce to tighten the regulation of food-allergens. Millions of Americans have food allergies, and each year about 150 people in the United States die from anaphylactic shock caused by a food allergy. Metabolic disorders, such as gluten intolerance, also require careful and strict elimination of certain foods from a persons diet to maintain normal health. Over 1.3 million people in the USA suffer from gluten intolerance, which requires strict elimination of wheat, rye and barley from the diet. A 2000 survey conducted jointly by the Food and Drug Administration, Minnesota, and Wisconsin found that one-quarter of the bakery products, candy, and ice cream sampled were contaminated with peanut or egg ingredients that were not declared on the product labels. Undeclared allergens may cause immediate reactions, or slow destruction of the intestine and long-term health complications associated with malnutrition. Representative Lowey has said that the legislation would require companies to list the major allergens (including those in spices, flavorings, and colorings) by their common English names and to include a telephone number on the label that consumers could call for more information. The legislation would also require manufacturers to better prevent cross-contact between products made in the same facility or on the same production line, allow the Food and Drug Administration to assess penalties against firms that violate the food allergen requirements, and require the Centers for Disease Control to establish a system for tracking food allergy-related deaths. In addition, Congress should also require companies to indicate on labels that the food may contain allergens when the possibility of contamination cannot be totally excluded. Rye and barley must be included in the list of allergens declared on labels. This addition will better serve all persons with allergies and intolerances. I urge you to cosponsor this important public health legislation, with the above-recommended addition. Sincerely,
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