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Celiac Disease & Gluten-Free Diet Blogs

  • kareng's Blog
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  • Research on South African Celiac Tours
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  • Keating's Not-so-Glutenfree life
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  • Searchin for a Primary Care Dr. In Redlands That is Knowledgeable about Celiac disease
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  • Living in Japan with Ceoliac Disease
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  • HONG KONG GLUTEN, WHEAT FREE PRODUCTS
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  • JillianC
  • Sugar's Blog
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  • Gluten-Free Sisters :)
  • Eab12's Celiac Blog
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  • Petroguy
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  • Soap Opera Central
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  • CAC's Blog
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  • happyasabeewithceliac's Blog
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  • Cheryl
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  • 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
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  1. Refractory sprue. The specter of this condition is enough to cause fear in the hearts of many people living with celiac disease, yet this fear is based more on myth and misunderstanding than on medical science. For those who are concerned about their risk for developing refractory sprue, there is much that can be done. For those who have developed the condition, there are treatment options and new hope on the horizon. To begin, however, we must substitute fear with knowledge. What is refractory sprue? This question has been the subject of great scientific inquiry, and there are differing opinions on the relationship between celiac disease and refractory sprue. However, there are several general characteristics of refractory sprue that researchers seem to agree on: Presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained An increased presence of intraepithelial lymphocytes (IEL) in the small bowel Severe malabsorption Researchers think of celiac disease as the beginning of a spectrum of conditions that could, for a small percentage of patients, end up at the other end to be enteropathy associated T-Cell Lymphoma. Most people with celiac disease will respond to the gluten free diet and never move to the next stage in this spectrum. But for those that do, they will experience changes in their immune system and in the cells lining their intestine that could lead to cancer. The spectrum would start with celiac disease, and the next step would be the non-responsiveness of the immune system to the gluten-free diet, in other words, refractory sprue. Then in some cases, a condition called ulcerative jejunitis develops, and finally, the damaged lining of the intestine produces cancer cells that mimic the mutations of the abnormal immune system cells. How many people with celiac disease are affected by refractory sprue? First, there are no reported cases in the medical literature of celiac sprue in people under 20 years of age. Second, the number of celiacs affected by refractory sprue, while not known, appears to be very small. We know this because the current estimates for small bowel cancers in people affected by celiac disease, as reported at the 10th International Conference on Celiac Disease is less than 2.5%. Refractory sprue can result in small bowel cancers, but not in all cases. It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets. The most common symptoms presented by the patients who truly had refractory sprue were weight loss, steatorrhea and diarrhea, in that order. What makes refractory sprue different than celiac sprue? Again, there are several medical points of view on this, but all researchers would agree that one marker indicates the presence of refractory sprue, and it is not found in celiac disease. Abnormal Intraepithelial Lymphocytes (Immune Cells) The intraepithelial lymphocytes found in celiac disease have a normal-looking appearance under the microscope and they behave like normal celiac immune cells (they respond to gluten when they shouldnt). These lymphocytes have the ability to communicate with other cells using different types of messages on their cell surfaces. When diagnosing celiac disease, pathologists look for an increased number of IELs as an indication of celiac disease. In refractory sprue, however, there is a different kind of IEL that is found in great numbers. This immune cell does not look normal, and it ignores the presence or absence of gluten. This type of cell does not have the ability to communicate normally with other cells as it would be expected to do. However, it does have the ability to communicate with cancer cells, contributing to their development. It is not clear what causes this type of IEL to develop or mutate, contributing to refractory sprue. It is possible to have refractory sprue without having these abnormal lymphocytes; in this case, treatment with steroids often results in response to the gluten free diet and a reversal of the condition. French researchers have developed a test to determine whether a biopsy specimen reflects a normal course of celiac disease with a slow response to the diet, or the need for further testing because refractory sprue may be present. In paraffin wax, a specimen can be stained to determine whether or not the immune cells express CD8, a protein often found on intraepithelial lymphocytes in celiac disease. If CD8 is positive, the individual has celiac and is responding very slowly to the diet. If the sample is CD8 negative, refractory sprue could be the reason. How is refractory sprue diagnosed and treated? It must be established through a thorough diet history and antibody testing that the individual is adhering to a strict gluten-free diet. Then, all other gastrointestinal diseases have to be ruled out before a diagnosis of refractory sprue is made. Conditions to be ruled out include pancreatic insufficiency, lactose malabsorption, parasite infestation, intolerance to other food proteins, coexisting inflammatory bowel disease, and autoimmune enteropathy, among others. Diagnosis should include a test called an enteroscopy, which is a procedure that explores more of the small intestine, and often finds ulcerative jejunitis, a marker of damage in refractory sprue. In addition, because the abnormal IELs can proliferate throughout the gut, a colonoscopy is recommended to determine if lymphocytic colitis is present. Treatment options include the elemental diet (also used in Crohns Disease), total parenteral nutrition (tube feedings), steroids, immunosuppressive therapies such as Cyclosporine, Infliximab, and in some cases, chemotherapy. Treatment options depend on the extent of refractory sprue found on biopsy and the nature of the clinical symptoms involved. How can I reduce the chances of developing refractory sprue? Researchers agree that most cases of refractory sprue develop in people who were diagnosed very late in life or who didnt follow the diet completely. Note that it doesn't matter how much gluten was consumed in these patients, they still developed refractory sprue. So the best protection against developing refractory sprue is to follow the diet. Be honest with yourself, especially if you cheat a little. What are you eating? Are you sure there isnt a great gluten-free alternative out there? Hey, there's even beer nowadays, so don't dismiss the suggestion of great gluten-free brownies, cakes, pies, pasta, crackers, cookies, or whatever else you are craving. Deal with your feelings too. Its easy to get angry about how life is much harder for people with celiac disease—how everything related to food requires too much planning, preparation, and explanation. These feelings are perfectly justified, but they do not justify cheating on your diet. There are great "quick fix" cookbooks out there, even convenience meals that are gluten free. Do whatever it takes to stay healthy, and gluten-free for life. Don't forget regular visits to your gastroenterologist or internist. Follow-up care for people with celiac disease is incredibly important, even if the medical community hasn't recognized it yet. Regular antibody testing to monitor compliance with the diet is an extra level of protection that every celiac needs. A simple anti-gliadin antibody test (IGG and IGA), six months post diagnosis, a year post-diagnosis and then every year after that for the first three years is key. In fact, the most serious celiac disease complications tend to occur in the first three years after diagnosis. Veteran celiacs should have their antibody levels checked every couple of years. While refractory sprue remains a potential complication for any adult with celiac disease, a majority of adult celiacs in this country will not have to face this difficult condition. For those diagnosed, treatment options continue to improve and the disease is becoming easier to manage. Researchers continue to study refractory sprue in order to better understand how the condition behaves and to develop new treatments. For now, the best defense against refractory sprue is a good offense—living a completely gluten-free life.
  2. Celiac.com 12/21/2018 - For most celiac patients, treatment with the gluten-free diet marks the turning point for their health. It can take a few months for the villi of the small intestine to heal, but eventually the villi are able to absorb the nutrients in their food and the symptoms of celiac disease are alleviated. Unfortunately, there are some celiacs who don’t respond to the gluten-free diet. This is the only current treatment for the disease, resulting in a condition known as refractory celiac disease or nonresponsive celiac disease (NRCD). Although celiac experts have stated that actual refractory celiac disease, wherein damage to the small intestine is irreversible, is rare, a preliminary study reported by Med Page Today suggests that the condition is more common than the medical community once thought. Fortunately, the study also showed that refractory celiac disease patients did respond favorably to medical treatment. Celiac disease, an autoimmune disease caused by gluten, a protein found in wheat, barley, and rye, affects three million Americans, or about 1% of the U.S. population. Patients with refractory celiac disease experience abdominal pain, severe malabsorption of nutrients, and intestinal damage. A single-center preliminary study suggests that “more patients with celiac disease may stop responding to their gluten-free diets,” as reported by Med Page Today. The researchers studied non-responsive celiac patients treated at the University of Virginia Medical Center over the past decade. According to Med Page Today, “Overall, patients were diagnosed with refractive disease a mean of 4.7 years following their initial diagnosis of celiac disease.” Furthermore, diagnoses of refractory celiac seemed to occur more recently, mostly within the last five years and almost half of them within the last six months. The researchers, including Christopher Hammerle, MD, and Sheila Crowe, MD, of the University of Virginia in Charlottesville, found that the refractory celiac disease patients did respond to treatment with thiopurines. “These agents are my treatment-of-choice for refractory celiac disease to avoid long-term steroids,” Hammerle told MedPage Today. According to Shailaja Jamma, MD, and Daniel Leffler, MD, MS, in Real Life with Celiac Disease, there could be many explanations for a failure to respond favorably to the gluten-free diet. In their chapter on NRCD, they write, “you would need to be on a GFD for at least 6 months without significant improvement before we would decide that you were not responding and look for other reasons.” This is due to the fact that recovery times vary from person to person, and as long as patient seems to be improving continually over time, no matter the speed, non-responsive celiac disease is usually an unnecessary label. Jamma and Leffler found that the most common causes—designated “very common’—are gluten exposure and Irritable Bowel Syndrome (IBS). The next most common causes of NRCD, labeled as “somewhat common,” are lactose intolerance or fructose malabsorption, microscopic colitis, and small intestinal bacterial overgrowth. “Rare” causes include actual refractory celiac disease, which can be confirmed with a biopsy of the small intestine, an eating disorder, inflammatory bowel disease, which can also be confirmed with a biopsy as well as imaging studies of the small or large intestine, pancreatic exocrine insufficiency, and motility disturbances, that is, when food moves too quickly or too slowly through the intestine. Finally, food allergy and cancer are “very rare” causes of NCRD. According to the Mayo Clinic, as reported by Celiac.com, “gluten contamination is the leading reason for non-responsive celiac disease,” and estimates that 18% of non-responsive celiac disease cases are due to actual refractory celiac disease. The Mayo Clinic researchers recommend that before making a refractory celiac disease diagnosis, additional diseases as well as gluten contamination should be ruled out as causes. According to Jamma and Leffler, “The first step is often to get confirmation that you do indeed have celiac disease,” since “celiac disease can be mistakenly diagnosed when the true problem is something else.” Med Page Today points out that most of the patients with refractory celiac disease responded favorably to a thiopurine medication rather than the conventional method of treatment for the condition, steroids. This form of treatment doesn’t carry with it the risk of steroid dependence. If you have some concerns regarding your response to the gluten-free diet, it’s recommended that you talk with your doctor about a non-responsive celiac disease evaluation. An evaluation of your diet may very well confirm that you are still ingesting gluten, but if this isn’t the case, other causes can be explored by your doctor. Thiopurine seems promising as a treatment option for those who do, in fact, have actual refractory disease. Resources: 1. About.com: Refractory (Unresponsive) Celiac Disease 2. Celiac.com: Causes of Non-responsive Celiac Disease - More than 50% Continue to Ingest Gluten Unknowingly. 3. Jamma, Shailaja, MD, and Leffler, Daniel A, MD. “Nonresponsive Celiac Disease.” Real Life with Celiac Disease: AGA Press, 2010. 4. Medpage Today: ACG: More Celiac Disease May Be Refractory

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  4. Celiac.com 08/22/2022 - Researchers present a case series of patients with chronic low-back pain and spondyloarthritis related features, who respond well to the gluten-free diet, despite celiac disease being ruled out. Currently, people who suffer from chronic low-back pain, with spondyloarthritis related features, are treated with immunosupresive drugs for both diseases. Prior studies have shown that gut involvement is a well-known association of spondyloarthritis, but limited to a few disorders, such as inflammatory bowel disease. A team of researchers recently set out to test the hypothesis that non-celiac gluten sensitivity is associated with chronic low-back pain related to spondyloarthritis, and that treatment with a gluten-free diet would be beneficial in certain patients. Researchers Carlos Isasi, Alexander Stadnitsky, Fernando Casco, Eva Tejerina, Ana Royuela, Blanca Esteban, and Natalia Fernandez Puga present results from a case series of patients with chronic low-back pain, spondyloarthritis related features, and positive response to a gluten-free diet, despite celiac disease being ruled out. The team's retrospective case report covers 110 patients from a tertiary hospital rheumatology clinic, which specializes in treating chronic pain and gluten sensitivity. All patients suffered from refractory low-back pain and spondyloarthritis features, and all patients followed a gluten-free diet despite celiac disease being ruled out. The team sought a measure of improvement called, "demanding improvement," which they defined based on the achievement of at least one of the following improvements: Asymptomatic status, remission of chronic low-back pain, returning to normal life, returning to work, changing from confinement to bed/wheelchair to being able to walk, returning to self-sufficiency for hygiene and personal care, discontinuation of opioids. Average patient age at low-back onset pain was 30 years old, while the average disease duration was 15 years. Nearly eighty percent of the patients experienced improvement, while nearly seventy percent achieved demanding improvement. Average duration of a gluten-free diet in patients with demanding improvement was five years. A total of 56 out of 69 patients with demanding improvement ingested gluten, with 54 of those experiencing clinically worse symptoms, considered to have non-celiac gluten sensitivity. Two main factors for making demanding improvement were oral aphthae and having a relative with celiac disease. Nearly four out of five patients retrospectively classified with axial spondyloarthritis showed demanding improvement. Nearly all patients with uveitis showed demanding improvement. Meanwhile, well over half of patients with fibromyalgia showed demanding improvement. The team's data support the hypothesis that non-celiac gluten sensitivity is associated with chronic low-back pain related to spondyloarthritis, and a gluten free diet has a therapeutic benefit for some patients. These results are important, because the could point the way to using a positive response to a gluten-free diet in people with non-gluten sensitivity to help improve chronic low-back pain related to spondyloarthritis in those patients. Read more in Med Hypotheses. 2020 Feb 28;140:109646 The researchers in this study are variously affiliated with the Rheumatology Department of Hospital Universitario Puerta de Hierro, Majadahonda, Madrid, Spain; Family Medicine at Hospital Universitario Puerta de Hierro, Majadahonda, Madrid, Spain; the Pathological Anatomy Department of Unilabs, Madrid, Spain; the Pathological Anatomy Department of Hospital Universitario Puerta de Hierro, Majadahonda Madrid, Spain; the Biostatistics Unit, Instituto de Investigación Sanitaria Puerta de Hierro-Segovia de Arana, Majadahonda, Madrid, Spain; the Asociación de celíacos y sensibles al gluten de Madrid (Association of Celiacs and Gluten-Sensitives of Madrid, Spain; and the Digestive Medicine Department of Hospital Universitario Puerta de Hierro, Majadahonda, Madrid, Spain.
  5. Celiac.com 12/28/2020 - With the outbreak of the SARS-CoV-2 virus, and cases of COVID-19 spreading worldwide, a number of people have been worried about celiac disease as a risk factor. A team of clinicians recently compiled a list of guidelines to help gastroenterologists and nutritionists in supporting their celiac disease patients during the COVID-19 outbreak. Among their insights, the team reminds readers that there is currently no data on the risk of COVID-19 and its outcomes in celiac disease. But, there is no evidence that celiac disease in itself represents a COVID-19 risk factor. Proven risk factors for COVID-19 remain old age, hypertension, diabetes, coronary artery disease, pulmonary disease, chronic kidney disease, and high body mass index. Depending on local recourses, the team encourages clinicians managing celiac patients during Covid-19 to initiate a rapid online service to address the patients’ doubts about a gluten-free diet, along with the use of POC tests for urinary gluten peptides and serological antibodies. One potential impact of COVID-19 restrictions can be reduced access to gluten-free food, which celiacs require as treatment. The paper provides helpful advice on this, and numerous other topics, including: What about hyposplenism? The team advise doctors to reassure patients that functional hyposplenism does not pose any greater risk for Covid-19. Refractory celiac disease Patients with refractory celiac disease and/or taking immunosoppressive/chemotherapic agents could face a higher risk for COVID-19, and so they should be vigilant about social distancing and shielding. Telecon clinics Telemedicine and gastroenterological/nutritional video-consulting is very helpful to patients with celiac disease. Dietary advice including Mediterranean and gluten-free dietary regimens The paper offers helpful tips on improving patient diet, especially by following a gluten-free Mediterranean diet, and consuming more antioxidant micronutrients. Read the full recommendations in BMC Gastroenterology volume 20, Article number: 387 (2020) The clinicians team included Luca Elli, Donatella Barisani, Valentina Vaira, Maria Teresa Bardella, Matilde Topa, Maurizio Vecchi, Luisa Doneda, Alice Scricciolo, Vincenza Lombardo & Leda Roncoroni. They are variously affiliated with the Center for Prevention and Diagnosis of Celiac Disease, Gastroenterology and Endoscopy Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy; the Department of Pathophisiology and Transplantation, University of Milano, Milan, Italy; the School of Medicine and Surgery, University of Milano-Bicocca, Monza, Italy; the Department of Pathophisiology and Transplantation, University of Milano, Milan, Italy; the Division of Pathology, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy; the Center for Prevention and Diagnosis of Celiac Disease, Gastroenterology and Endoscopy Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Via F. Sforza 35, 20122, Milan, Italy; and the Department of Biomedical, Surgical and Dental Sciences, University of Milan, Milan, Italy.
  6. Celiac.com 10/27/2014 - There have been a few reports tying cortical myoclonus with ataxia to celiac disease. Such reports also suggest that the former is unresponsive to a gluten-free diet. A team of researchers recently set out to determine if there is any significant connection between the two conditions. The research team included Ptolemaios G. Sarrigiannis, Nigel Hoggard, Daniel Aeschlimann, David S. Sanders, Richard A. Grünewald, Zoe C. Unwin, and Marios Hadjivassiliou. They are variously associated with the Departments of Gastroenterology, Neurology, Neurophysiology and Neuroradiology at Royal Hallamshire Hospital, in Sheffield, UK, and with the College of Biomedical and Life Sciences at Cardiff University in Cardiff, UK. The team presented detailed electro-clinical characteristics of a new syndrome of progressive cortical hyperexcitability with ataxia and refractory celiac disease. Regular follow ups of over 600 patients with neurological manifestations due to gluten sensitivity revealed 9 patients with this syndrome. They found that all nine patients, six men and three women, experienced asymmetrical irregular myoclonus involving one or more limbs and sometimes face. This was often stimulus sensitive and became more widespread over time. Three patients had a history of Jacksonian march, and five had at least one secondarily generalized seizure. Electrophysiology showed evidence of cortical myoclonus. Three showed a phenotype of epilepsia partialis continua at onset. All patients showed clinical, imaging and/or pathological evidence of cerebellar involvement. All patients followed a strict gluten-free diet, and most successfully eliminated gluten-related antibodies. However, all patients still showed evidence of enteropathy, suggests that refractory celiac disease is to blame. During the study, two patients died from enteropathy-associated lymphoma and one from status epilepticus. Five patients were treated with mycophenolate and one in addition with rituximab and IV immunoglobulins. These patients showed improvement of ataxia and enteropathy, but continued to suffer the effects of myoclonus. These results indicate that myoclonus ataxia might be the most common neurological manifestation of refractory celiac disease. The clinical involvement, apart from ataxia, covers the whole clinical spectrum of cortical myoclonus. Source: Cerebellum & Ataxias 2014, 1:11. doi:10.1186/2053-8871-1-11

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  8. Celiac.com 02/19/2020 - What role, if any, do nutrients play in non-responsive celiac disease? A team of researchers recently set out to compile an overview of the causes of non-responsive celiac disease (NRCD) in adults, highlight a systematic approach to investigate these patients, and assess the latest approaches to managing this subset of celiac disease. The team included Hugo A. Penny, Elisabeth M. R. Baggus, Anupam Rej, John A. Snowden, and David S. Sanders. They are variously associated with the Academic Unit of Gastroenterology, University of Sheffield, Sheffield, UK; the Lydia Becker Institute of Inflammation and Immunology, University of Manchester in Manchester, UK; and the Department of Haematology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK. Celiac disease is a common autoimmune condition of the gut which results from gluten consumption by genetically susceptible individuals. A lifelong gluten-free diet is still the only currently recognized treatment for celiac disease. While most people with celiac disease see a major improvement in symptoms once eating a gluten-free diet, nearly one-in-three continue to show symptoms, including ongoing gut inflammation. Patients who continue to suffer symptoms on a gluten-free diet are said to have "non-responsive celiac disease". This may be due to ongoing gluten ingestion, witting or unwitting, slow healing, refractory celiac disease, and/or some other condition. The team recently published their review of the causes of non-responsive celiac disease in adults. In their paper, they also delineate a process for investigating these patients, and gauge the latest approaches to managing this type of celiac disease. The main causes of non-responsive celiac disease: An Alternative Primary Diagnosis An Associated Condition Dietary Indiscretion Gluten Super-Sensitivity Refractory Celiac Disease The researchers conclude: Read their full report in Nutrients
  9. Celiac.com 05/18/2020 - Most people with celiac disease see a major improvement in the weeks and months after they begin a gluten-free diet. Most celiac patients on a gluten-free diet experience full gut healing within the first few months, and nearly all of them within 12-18 months. However, nearly one in three celiac patients may show adverse signs, symptoms or persistent small intestinal damage after one year on a gluten-free diet. To properly diagnose and treat these patients, they must be assessed for other common GI problems, and for their celiac disease status. A team of researchers recently set out to develop guidelines for the indications and use of the gluten contamination elimination diet for patients with non-responsive celiac disease. The research team included Maureen M. Leonard, Pamela Cureton, and Alessio Fasano, who are variously affiliated with the Center for Celiac Research, Mucosal Immunology and Biology Research Center, Massachusetts General Hospital and Division of Pediatric Gastroenterology and Nutrition, Massachusetts General Hospital for Children, Boston, MA, USA, and the Department of Pediatrics, University of Maryland School of Medicine, Baltimore, MD, USA. In their paper titled, Indications and Use of the Gluten Contamination Elimination Diet for Patients with Non-Responsive Celiac Disease, they offer a method for assessing patients with celiac disease with ongoing symptoms, elevated serology, and or villous atrophy, even on a gluten-free diet. The team details methods for diagnosing, and distinguishing between, non-responsive and refractory celiac disease. Lastly, the team describes the range of conditions for employing the gluten contamination elimination diet, and offers guidance for clinicians to use the diet as needed for their non-responsive celiac patients who meet the criteria. Since a significant number of people with celiac disease fail to improve on a gluten-free diet, these guidelines will be helpful in spotting and treating these patients. Do you or a loved one suffer from non-responsive celiac disease? Share your story in the comments below. Read more in Nutrients, Volume 9 &nbsp;Issue 10
  10. Celiac.com 02/10/2020 - There are no articles in the medical literature about the role of repeat small bowel capsule endoscopy (SBCE) in patients with refractory celiac disease (RCD) following treatment with steroids and/or immunosuppressants. A team of researchers recently set out to compare the findings on SBCEs from a group of 23 patients with histologically proven RCD against the results of 48 patients with uncomplicated celiac disease. All patients had concurrent duodenal histology and serology taken at the time of SBCE. The team included Stefania Chetcuti Zammit, David S. Sanders, Simon S. Cross, and Reena Sidhu. They are variously associated with Academic Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals, Sheffield; and the Academic Unit of Pathology, Department of Neuroscience, Faculty of Medicine, Dentistry & Health, The University of Sheffield, Sheffield, UK. SBCE revealed refractory celiac disease patients to have greater mucosal involvement than patients with uncomplicated celiac disease. After steroid and/or immunosuppressant treatment, refractory celiac disease patients showed an improvement in the extent of affected small bowel mucosa. Statistically, both histology and serology were the same for first and second SBCE in refractory celiac disease patients. The study data indicates that SBCE is useful in documenting the degree of mucosal involvement in refractory celiac disease patients. The team notes that this is the first study to demonstrate the value of a second look SBCE to assess the degree of improvement in celiac disease in the small bowel following treatment. However, more study is needed to more firmly establish these results. Read more in J Gastrointestin Liver Dis, March 2019 Vol. 28 No 1: 15-22
  11. Celiac.com 02/09/2017 - Dermatitis herpetiformis is a skin disease that causes blistering, and is understood to be an external symptom of celiac disease. Refractory celiac disease, which does not respond to a gluten-free diet and which carries an increased risk of lymphoma, is well-known to clinicians and researchers. A team of researchers recently set out to determine if there were any cases of refractory dermatitis herpetiformis with active rash and persistent small bowel atrophy that do not respond to a gluten-free diet. The research team included K Hervonen, TT Salmi, T Ilus, K Paasikivi, M Vornanen, K Laurila, K Lindfors, K Viiri, P Saavalainen, P Collin, K Kaukinen, and T Reunala. They are affiliated with the Department of Dermatology, Tampere University Hospital and University of Tampere, in Tampere, Finland. For their study, the team analyzed their series of 403 patients with dermatitis herpetiformis. They found seven patients (1.7%), who had been on a gluten-free diet for a mean of 16 years, but who still required dapsone to treat the symptoms of dermatitis herpetiformis. Of these, one patient died from mucinous adenocarcinoma before re-examination. At re-examination, the team found skin immunoglobulin A (IgA) deposits in 5 of 6 refractory and 3 of 16 control dermatitis herpetiformis patients with good dietary response. At reexamination, they studied small bowel mucosa from 5 refractory and 8 control dermatitis herpetiformis patients; results were normal in all 5 refractory and 7 of 8 control dermatitis herpetiformis patients. One refractory dermatitis herpetiformis patient died from adenocarcinoma, but none of the patients developed lymphoma. This study marks the first time doctors have seen small bowel mucosa healing in patients with refractory dermatitis herpetiformis, where the rash is non-responsive to a gluten-free diet. This means that even though dermatitis herpetiformis sufferers may still have a rash, they can also have a healthy gut. This is sharply different from refractory celiac disease, where small bowel mucosa do not heal on a gluten-free diet. Source: Acta Derm Venereol. 2016 Jan;96(1):82-6. doi: 10.2340/00015555-2184.
  12. Celiac.com 04/02/2012 - A team of researchers recently set out to assess diagnostic yield of Vβ and Vγ clonality in refractory celiac disease (RCD). The team set out to verify whether analyzing both TCRβ and TCRγ clonality in duodenal biopsies from RCD patients improves diagnostic accuracy. The research team included Vittorio Perfetti, Laura Brunetti, Federico Biagi, Rachele Ciccocioppo, Paola I. Bianchi, and Gino R. Corazza. They are affiliated with the Coeliac Centre/First Department of Internal Medicine, and the Department of Medical Oncology at the Fondazione IRCCS Policlinico San Matteo of the University of Pavia in Italy. Refractory celiac disease is what is known as a pre-neoplastic condition, because many patients develop a kind of cancer called enteropathy-type T-cell lymphoma, which is a mature T-cell receptor α-β lymphoma that forms in the gut, and is often fatal. Recent research has been directed at a variety of intraepithelial intestinal lymphocytes. Polymerase chain reaction (PCR) analysis and sequencing shows that these lymphocytes both express the same lymphoma T-cell receptor variable region (V)γ. Also, the Biomedicine and Health-2 Concerted Action has created standardized, highly specific, and sensitive PCR assays for both Vγ and Vβ. The team set out to verify whether analyzing both rearrangements in duodenal biopsies from RCD patients increases the diagnostic accuracy of this method. For the study, the team analyzed duodenal biopsies from 15 RCD patients, 21 negative controls, and 2 positive controls with enteropathy-type T-cell lymphoma complicating celiac disease. The them conducted multiplex clonality analyses using Biomedicine and Health-2 protocols. They cloned and sequenced PCR products. They found monoclonal rearrangements in 5/15 samples from patients with RCD, two of which showed both rearrangements, two which showed Vβ, and just one Vγ clonality. Monoclonality was found in 4/8 of the RCD patients who subsequently died, whereas only 1/7 of the patients still alive presented a monoclonal rearrangement. Positive controls revealed both monoclonal rearrangements; rearrangements were not detected in 20 of 21 negative controls. Sequencing of the amplified fragments confirmed the results. Results showed that the combined analysis of both TCRβ and TCRγ rearrangements allowed recognition of monoclonal populations in patients who otherwise tested negative. Overall detection rates increased from 20%(Vγ only) to 33%(Vγ and Vβ), Increasing detection in patients who would otherwise test negative increases chances of early identification of RCD patients at high risk of death. Source: J Clin Gastroenterol. 2012 Jan 30.
  13. So I have been gluten free for a little over 8 months now and I am very strict to not cheat and minimize any chances of cross contamination. When I first started the gluten free diet I saw some improvements, but then these stopped and even regressed. I have continued to lose weight and my gut has not been a happy camper. My GI has said that I most likely have refractory celiac disease and expects to do a combination steroids and constant work with my dietician. The point of this being, has anyone had a similar experience and is there anything else I should know or expect?
  14. Celiac.com 09/05/2018 - About one out of every twenty celiac patients fails to respond to a gluten-free diet, and goes on to develop refractory celiac disease (RCD). RCD is a serious condition marked by appearance of intraepithelial T lymphocytes. Depending on the phenotype of the lymphocytes, people develop either RCD I or RCD II. Patients with RCD type II (RCDII) show clonal expansions of intraepithelial T lymphocytes, and face an especially poor prognosis. Just over half of these patients will die within five years of onset due to aggressive enteropathy-associated T-cell lymphoma. At this time, researchers don’t know whether genetic variations might play a role in the severe progression from celiac disease to RCDII. A team of researchers recently set out to try to get some answers. The team began by conducting the first genome-wide association study to identify the causal genes for RCDII, along with the molecular pathways at play in cases of RCDII. For their genome-wide association study, the team used 38 Dutch patients with RCDII, and replicated the 15 independent top-associated single nucleotide polymorphism (SNP) variants (P<5×10) in 56 independent French and Dutch patients with RCDII. The team found that, after replication, SNP rs2041570 on chromosome 7 was significantly associated with progression to RCDII (P=2.37×10, odds ratio=2.36), but not to celiac disease susceptibility. They also found that SNP rs2041570 risk allele A was associated with lower levels of FAM188B expression in blood and small intestinal biopsies. Stratifying RCDII biopsies by rs2041570 genotype revealed differential expression of innate immune and antibacterial genes that are expressed in Paneth cells. The team’s efforts resulted in the identification of a new SNP associated with the severe progression of celiac disease to RCDII. Their data suggest that genetic susceptibility to celiac disease might be unrelated to celiac progression to RCDII, and suggests that Paneth cells might play a role in RCDII progression. Source: Eur J Gastroenterol Hepatol. 2018 Aug;30(8):828-837. The research team included B Hrdlickova, CJ Mulder, G Malamut, B Meresse, M Platteel, Y Kamatani, I Ricaño-Ponce, RLJ van Wanrooij, MM Zorro, M Jan Bonder, J Gutierrez-Achury, C Cellier, A Zhernakova, P Nijeboer, P Galan, S Withoff, M Lathrop, G Bouma, RJ Xavier, B Jabri, NC Bensussan, C Wijmenga, and V Kumar. They are variously affiliated with the Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Department of Gastroenterology, VUMC, Amsterdam, The Netherlands, INSERM U1163, Imagine Institute and Paris Descartes University, the Department of Gastroeneterology, Georges Pompidou European Hospital, the Paris 13 University Sorbonne Paris Cité, UREN, Inserm (U557), Inra (U1125), Cnam, Bobigny, France, the scientific director of McGill University and Génome Québec Innovation Centre, Montréal, Québec, Canada, the Gastrointestinal Unit and Center for the Study of Inflammatory Bowel Disease, Massachusetts General Hospital and Harvard Medical School, Boston, The Broad Institute of MIT and Harvard, Cambridge, Massachusetts, the Department of Medicine, University of Chicago, Chicago, Illinois, USA., and the K.G. Jebsen Coeliac Disease Research Centre, Department of Immunology, University of Oslo, Norway.
  15. Greetings fellow Celiacs! I was first diagnosed while living in Prague, and following an AIP diet and the advice of a Functional Medicine Naturopath there, I went into remission (ttg markers below 6) and lost 30+lbs, which allowed me to feel like my best self (and the weight was a sign of inflammation in my body in my case). There was less strain on my joints, more mental clarity, better memory function, more energy, etc. And I was happy. I had surgery and an IUD added to my life a year into that remission. It brought on a horrendous flare and I ended up in hospital with pneumonia. I lost more weight while sick, and ate a lot of (safe) carbs while I was trying to recover a healthy weight. I also moved back to Victoria, BC in the midst of that. I've added thyroid meds and LDN to my treatment since then, and swapped around a few supplements, and added in foods that weren't available in CZ. The first 1.5 years here I also lived adjacent to the kitchen ventilation of a busy gluten serving restaurant (I have reacted to airborne gluten in other situations too so that's not what's up for debate). I have been over my diet, supplements, and medications with a fine tooth comb and cannot find a source where gluten is getting in. And yet my ttg varies between 13 and 23 (it was 20 at preliminary diagnosis, 59 after eating a small portion of gluten daily for 4 days leading up to testing, which also made me violently ill for 6 weeks+++). I have also gained 35lbs+ and have experienced a relapse of almost every symptom I had prior to diagnosis/starting Autoimmune Paleo. I'm baffled. My care team is baffled. So I thought I would put this out there just in case somewhere in this forum there is another human dealing with similar things who has magically figured out the answers I need. Many thanks.
  16. Celiac.com 08/31/2017 - A possible mechanism behind the cause of refractory celiac disease and why fecal transplantation (fecal microbiota transfer) may provide a cure was presented in "Synthetic Stool May Advance Fecal Transplant Therapy for Celiac Disease" 02/13/2013.[1] In September 2016, the article "Serendipity in Refractory Celiac Disease: Full Recovery of Duodenal Villi and Clinical Symptoms after Fecal Microbiota Transfer" was published in the Journal of Gastrointestinal and Liver Disease[2] describing the first known case of refractory celiac disease cured by a fecal transplant. The patient in that case was being treated for a recurrent Clostridium difficile infection. This very important milestone article somehow missed the light of the news media at that time. The 68-year old woman patient was a 10-year diagnosed victim of refractory celiac disease on a gluten-free diet. On admission for treatment of severe diarrhea, the patient exhibited Marsh IIIA villous atrophy. The patient was already receiving on-going treatment for refractory celiac disease with drugs. Additional drugs and antibiotics were given to treat the diarrhea. Eventually, the patient tested positive for C. difficile. Antibiotics were ineffective to treat the recurrent C. difficile infection. A fecal microbiota transfer was then performed. The C. difficile infection and diarrhea resolved, and, 6 months after the fecal transplant, villous atrophy resolved and went to Marsh 0. All symptoms of refractory celiac disease were eliminated. The patient remains symptom free on a continuing gluten-free diet. The case clearly demonstrates the need to fully investigate the use of fecal microbiota transfers to treat celiac disease. As suggested in my earlier reference[1], a standardized synthetic stool should be developed to enable full scale clinical trials. Also a full scale research effort into completely healing and restoring the intestinal mucosa with the novel protein R-spondin1 needs to be funded and restarted. Sources: 1. Synthetic Stool May Advance Fecal Transplant Therapy for Celiac Disease. Roy S. Jamron. Celiac.com 2013 Feb 13. 2. Serendipity in Refractory Celiac Disease: Full Recovery of Duodenal Villi and Clinical Symptoms after Fecal Microbiota Transfer. van Beurden YH, van Gils T, van Gils NA, Kassam Z, Mulder CJ, Aparicio-Pages N J Gastrointestin Liver Dis. 2016 Sep;25(3):385-8.
  17. Suggestions please, I have been gluten free for 6 years and feel fairly confident about cross contamination, hidden gluten, my medications, toothpaste, lipstick, salad dressing, etc. I rarely eat out and when I do, it is at a restaurant that can be trusted to be thorough (well, as much as that is possible). And yet, I feel so tired, migraines, aching joints, brain fog, and words not coming out right when I talk. My GI ran many blood tests which came out normal except for low magnesium level and the presence of tTg in higher levels. When the assistant called, she began the conversation with a condescending lecture about cheating on the gluten free diet. I about lost it, but didn't. I let her know that I do not cheat and am diligent about what goes in and on my body. A follow up appointment has been made for 12 weeks out along with another intestinal biopsy. In the meantime, I am going through everything to find any hidden sources of gluten I may not be aware of. I am supposed to hear from a dietician but haven't yet. (I met with one early on in my diagnosis.) Salad dressings - any really good certified gluten-free ones? Are the vinegars used in them okay or no? I have changed my coffee and coffee maker out. I use Coffee Mate sweet Italian creamer. It states it is gluten free, but, has anyone else had problems? I have checked and rechecked my Rx pills as well as any OTC meds and supplements. I WAS eating Quaker Oats chocolate rice cakes (gluten free is stated on the packing but not certified) and suspect them; however, I stopped a couple of weeks ago and do not feel much better. (Migraine and brain fog yesterday along with joint pain). Has anyone else gone through this? What do you suggest I do? I would like to reeducate the nurse/assistant at my GI on her assumption that everyone must "cheat" and her lecture (I put in a call to my GI but was told by the nurse that she doesn't talk to patients outside of appointments ???) In all the blood work I have had done, my tTg levels are high. Am I non responsive to the diet? Ultra sensitive? Thanks for feedback.
  18. Celiac.com 07/03/2017 - Refractory celiac disease (RCD) is a serious complication of celiac disease. There are two types, RCD I, and RCD II. Unlike RCD type I, RCD type II often leads to enteropathy-associated T-cell lymphoma (EATL), which is associated with clonally expanding T-cells that are also found in the sequentially developing EATL. Using high-throughput sequencing (HTS), a team of researchers recently set out to establish the small-intestinal T-cell repertoire (TCR) in celiac disease and RCD to unravel the role of distinct T-cell clonotypes in RCD pathogenesis. The research team included J Ritter, K Zimmermann, K Jöhrens, S Mende, A Seegebarth, B Siegmund, S Hennig, K Todorova, A Rosenwald, S Daum, M Hummel, and M Schumann. They are variously affiliated with the Institute of Pathology, Charité-University Medicine, Berlin, Germany, the Department of Gastroenterology, Infectious Diseases and Rheumatology, Charité-University Medicine, Berlin, Germany, HS Diagnomics GmbH, Berlin, Germany, the Center for Tumor Medicine, Charité-University Medicine, Berlin, Germany, the Institute of Pathology, University of Würzburg, and Comprehensive Cancer Center Mainfranken (CCCMF), Würzburg, Germany, the Berlin Institute of Health, Berlin, Germany, the Berlin-Brandenburg School for Regenerative Therapies, Berlin, Germany. Their team examined DNA extracted from duodenal mucosa specimens of 9 control subjects, 10 active celiacs, 9 celiacs on a gluten-free diet, 8 RCD type I patients, 8 RCD type II patients, and 3 unclassified Marsh I cases collected from 2002 to 2013. To make their examination, they used TCRβ-complementarity-determining regions 3 (CDR3) multiplex PCR, followed by HTS of the amplicons. They generated an average of 106 sequence reads per sample, consisting of up to 900 individual TCRβ rearrangements. In RCD type II, the most frequent clonotypes (sequence reads with identical CDR3) represent about 43% of all TCRβ rearrangements. This was substantially higher than in control subjects (6.8%; p Repeat endoscopies in individual patients showed that the clonotypes remain stable for up to a few years without clinical symptoms of EATL. Individual patients with RCD type II showed unique dominant clonotypes that were un-related among patients. Celiac-associated, gliadin-dependent CDR3 motifs were only detectable at low frequencies. TCRβ-HTS analysis unravels the TCR in celiac disease, and allows for detailed analysis of individual TCRβ changes. Patients with RCD type II have unique, dominant TCRβ sequences that are critically different from known gliadin-specific TCR sequences, which indicates that these clonal T-cells expand on their own, with no influence from gluten stimulation. Source: Gut. 2017 Feb 10. pii: gutjnl-2016-311816. doi: 10.1136/gutjnl-2016-311816.
  19. Celiac.com 01/30/2017 - A team of researchers recently set out to analyze potential changes in occurrence of complicated coeliac disease over the last 25 years. The research team included W. Eigner, K. Bashir, C. Primas, L. Kazemi-Shirazi, F. Wrba, M. Trauner, and H. Vogelsang. They are variously affiliated with the Division of Gastroenterology and Hepatology, Department of Internal Medicine III, Medical University Hospital of Vienna, Vienna, Austria, and with the Department of Pathology at the Medical University of Vienna in Vienna, Austria. The team included and evaluated a total of 1,138 patients based on time of first presentation at the Medical University of Vienna, Austria. They assessed occurrences of refractory celiac disease and associated malignancies in 5-year intervals from January 1990 until December 2014, and then compared results over time. Twenty-nine patients, or 2.6%, were diagnosed with refractory celiac disease. Of these, 65.6% were females averaging 62.8 years of age at diagnosis. The proportion of those patients was 2.6%, 3.1%, 3.3%, 2.7% and 0.5% for the 5 year intervals from 1990 through 2014. The number of refractory cases has been generally decreasing since 2000 (P = 0.024). During that time, a total of seven patients presented with lymphoma, totaling 0.6%, 0.4%, 1.1%, 0.8% and 0% of patients each year, respectively. Similarly the number of patients with adenocarcinoma, four patients total, decreased to 0% until 2014. Nearly 50% of patients suffering from refractory disease died during the study period. Meanwhile, 71.4% all patients diagnosed with lymphoma died, with a 5-year survival rate of 28.6%. Over the past 15 years, rates of complicated celiac disease have been decreasing. This may be due to increased celiac disease awareness, along with optimized diagnosis and treatment with avoidance of long-term immunological disease activity. Known risk factors for refractory celiac disease and related cancer include untreated symptomatic disease and delayed diagnosis. Source: Aliment Pharmacol Ther, 45: 364–372. doi:10.1111/apt.13867
  20. Celiac.com 12/07/2016 - Refractory celiac disease (RCD) is a form of celiac disease that does not respond to treatment with gluten-free diet, and often involves greater risk of complications. The guts of many RCD patients over-produce effector cytokines, which are supposed to amplify the tissue-destructive immune response. However, it remains unclear if the RCD-associated mucosal inflammation is sustained by defects in counter-regulatory mechanisms. A team of researchers recently set out to determine whether RCD-related inflammation is marked by high Smad7, an intracellular inhibitor of transforming growth factor (TGF)-β1 activity. The research team included S Sedda, V De Simone, I Marafini, G Bevivino, R Izzo, OA Paoluzi, A Colantoni, A Ortenzi, P Giuffrida, GR Corazza, A Vanoli, A Di Sabatino, F Pallone, and G Monteleone. They are variously affiliated with the Department of Systems Medicine at the University of Rome "Tor Vergata," the First Department of Internal Medicine at the Fondazione IRCCS Policlinico San Matteo of the University of Pavia, and with the Department of Molecular Medicine at San Matteo Hospital at the University of Pavia in Pavia, Italy. The team evaluated Smad7 in duodenal biopsy samples of patients with RCD, patients with active celiac, patients with inactive celiac disease and healthy controls by Western blotting, immunohistochemistry and real time-PCR. In the same samples, they used ELISA and immunohistochemistry to assess TGF-β1 and phosphorylated (p)-Smad2/3, respectively. They evaluated pro-inflammatory cytokine expression in RCD samples cultured with Smad7 sense or antisense oligonucleotide. Smad7 protein, but not RNA, expression was increased in RCD, as compared to active and inactive celiac patients and healthy controls. This increased expression was associated with defective TGF-β1 signaling, as marked by diminished p-Smad2/3 expression. TGF-β1 protein content did not differ among groups. Knockdown of Smad7 in RCD biopsy samples reduced IL-6 and TNFα expression. These results show that, in RCD, high Smad7 associates with defective TGF-β1 signaling, and sustains inflammatory cytokine production. These results suggest a novel mechanism by which amplifies mucosal cytokine response in RCD, and suggest that treatments targeting Smad7 might be helpful in RCD. Source: Immunology. 2016 Nov 14. doi: 10.1111/imm.12690.
  21. Celiac.com 11/03/2016 - Refractory celiac disease type II (RCDII) often transforms into an enteropathy-associated T-cell lymphoma (EATL), a serious condition that requires intensive treatment. Current treatment strategies for RCDII include cladribine(2-CdA) and autologous stem cell transplantation (auSCT). A team of researchers recently set out to assess long-term survival in refractory celiac disease type II, and to define clear prognostic criteria for EATL development comparing two treatment strategies. They also wanted to evaluate histological response as prognostic factor. The research team included P Nijeboer, RLJ van Wanrooij, T van Gils, NJ Wierdsma, GJ Tack, BI Witte, HJ Bontkes, O Visser, CJJ Mulder, and G Bouma. They are variously affiliated with the Department of Gastroenterology, the Department of Nutrition and Dietetics, the Department of Epidemiology and Biostatistics, the Department of Pathology, and the Department of Haematology at VU University Medical Centre in Amsterdam, The Netherlands. For their study, they retrospectively analyzed 45 patients. All patients received 2-CdA, after which they were either closely monitored (monotherapy, n=30) or received a step-up approach, including auSCT (step-up therapy, n=15). Ten patients (22%) developed EATL, nine of whom had received monotherapy. Absence of histological remission after monotherapy was associated with EATL development (p=0.010). A total of 20 patients (44%) died, with an average survival of 84 months. Overall survival (OS) in the monotherapy group was far better in those with complete histological remission compared to those with without histological remission. The monotherapy patients, who achieved complete histological remission, showed comparable EATL occurrence and OS as compared to the step-up therapy group (p=0.80 and p=0.14 respectively). Histological response is an accurate parameter to evaluate the effect of 2-CdA therapy and this parameter should be leading in the decisions whether or not to perform a step-up treatment approach in RCDII. Source: United European Gastroenterology Journal, April 2016; DOI: 10.1177/2050640616646529
  22. Celiac.com 10/17/2016 - Refractory celiac disease is a severe condition with few good treatment options, and which often eventually results in death. A group of researchers recently set out to create a prognostic model to estimate survival of patients with refractory celiac disease. The research team included A. Rubio-Tapia, G. Malamut, W. H. M. Verbeek, R. L. J. van Wanrooij, D. A. Leffler, S. I. Niveloni, C. Arguelles-Grande, B. D. Lahr, A. R. Zinsmeister, J. A. Murray, C. P. Kelly, J. C. Bai, P. H. Green, S. Daum, C. J. J. Mulder, and C. Cellier. They are variously affiliated with the Mayo Clinic, Rochester, MN, USA, the Hopital Europeen Georges-Pompidou, Paris, France, the Hospital Dr. Carlos Nonorino Udaondo, Buenos Aires, Argentina, the Columbia University Medical Center, New York, NY, USA, Beth Israel Deaconess Medical Center, Boston, MA, USA, the Charite-University Medicine Berlin, Berlin, Germany, and the VU University Medical Centre, Amsterdam, The Netherlands. Before setting up their prognostic model, the team first assessed predictors of 5-year mortality using Cox proportional hazards regression on subjects from a multinational registry. The team used bootstrap resampling to internally validate the individual factors and overall model performance. To calculate a risk score for 5-year mortality, the team averaged all estimated regression coefficients gathered from 400 bootstrap models that they formulated from their multinational cohort of 232 patients diagnosed with refractory celiac disease across seven centers. Average patient age was 53 years and the group included 150 women out of the 232 patient total. A total of 51 subjects died during a 5-year follow-up, which put the cumulative 5-year all-cause mortality at 30%. The results from a multiple variable Cox proportional hazards model showed that the following variables were significantly associated with 5-year mortality: age at refractory celiac disease diagnosis (per 20 year increase, hazard ratio = 2.21; 95% confidence interval, CI: 1.38–3.55), abnormal intraepithelial lymphocytes (hazard ratio = 2.85; 95% CI: 1.22–6.62), and albumin (per 0.5 unit increase, hazard ratio = 0.72; 95% CI: 0.61–0.85). A simple weighted three-factor risk score was created to estimate 5-year survival. The team's prognostic model for predicting 5-year mortality among patients with refractory celiac disease may help clinicians to guide treatment and follow-up. Source: Alimentary Pharmacology & Therapeutics. DOI: 10.1111/apt.13755View/save citation
  23. Celiac.com 05/24/2016 - People with type II refractory celiac disease (RCD), suffer from severe malabsorption syndrome and face a poor prognosis, as there is currently no effective treatment. Prompted by the regenerative and immune-influencing properties of mesenchymal stem cells (MSCs), a research team recently set out to assess the viability, safety, and efficacy of a series of infusions of autologous bone marrow-derived MSCs in a 51-year-old woman with type II RCD. The research team included R Ciccocioppo, A Gallia, MA Avanzini, E Betti, C Picone, A Vanoli, C Paganini, F Biagi, R Maccario, and GR Corazza. They are variously affiliated with the Department of Internal Medicine, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, the Department of Internal Medicine, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, the Cell Factory and Research Laboratory, Department of Pediatrics, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, the Clinic Cytometry Laboratory, Department of Hematology, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, Department of Molecular Medicine, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, all in Pavia, Italy. The team began by isolating, expanding, and characterizing mesenchymal stem cells using standard clinical protocols. For each patient, the team arranged to monitor malabsorption indexes, mucosal architecture, and percentage of aberrant intraepithelial lymphocytes at the time of enrollment, at each infusion, and after 6 months. The also arranged to assess mucosal expression of interleukin (IL)-15 and its receptor. Once the team determined that the expansion of MSCs was feasible, they provided the patient with four systemic infusions of 2 × 106 MSCs per kg body weight 4 months apart, with no adverse effects. Over the course of the treatment, the patient experienced gradual and durable improvement of her condition, including normalized stool frequency, body mass index, laboratory test results, and mucosal architecture. Most impressively, the expression of IL-15 and its receptor almost completely vanished. Based on this clinical case, treatment of RCD with serial MSC infusions seems to offer a path to recovery from this life-threatening condition, while blocking the IL-15 pathogenic pathway. This is the first successful treatment of refractory celiac disease. Stay tuned for further developments regarding the use of stem cell infusions to treat refractory celiac disease. Source: Mayo Clin Proc. 2016 Apr 14. pii: S0025-6196(16)30004-0. doi: 10.1016/j.mayocp.2016.03.001.
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