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Celiac Disease & Gluten-Free Diet Blogs

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  • Cheryl
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  • Gluten Challenge
  • twins2's Blog
  • just trying to feel better's Blog
  • Celiac Teen
  • MNBelle blog
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  • Coeliac Disease or Coeliac Sprue or Non Tropical Sprue
  • karalto's Blog
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  • Madison Papers: Living Gluten-Free in a Gluten-Full World
  • babinsky's Blog
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  • Celiac Diagnosis at Age 24 months in 1939
  • Sandy R's Blog
  • mary m's Blog
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  • keyboard
  • Louisa's Blog
  • Guts & Brains
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  • Connie C.'s Blog
  • garden girl's Blog
  • april anne's Blog
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  • benalexander60's Blog
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  • Jersey Shore wheat no more's Blog
  • swezzan's Blog
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  • MeltheBrit's Blog
  • glutenfreecosmeticcounter
  • Reasons Why Tummy tuck is considered best to remove unwanted belly fat?
  • alfgarrie's Blog
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  • KMBC2014's Blog
  • Musings and Lessons Learned
  • txwildflower65's Blog
  • Uncertain
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  • deedo's Blog
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  • 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
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  • 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
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  • totalallergyman's Blog
  • Kim
  • Vhips
  • twinsmom's Blog
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  • 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
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  • Adventures of a Gluten Free Mom
  • Fiona S
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  • Carla
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  • 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
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  • 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
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  • 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
  • User Is it safe to use GB WhatsApp pro in 2024?
  • 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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Found 21 results

  1. Can dehydration from diarrhea cause Celiac Crisis?? It started with severe unexplained diarrhea in AM. No fever, not Covid (tested). Then Nausea came on and a few hrs later intense tingling in hands up arms, fingers stiffened and could not move. Stomach pain (from diarrhea all day) slightly moved up to chest for a time. Lasted a few minutes. My head dropped, couldn’t keep it up and hard to talk and couldn’t walk. Was it a seizure? Condition slightly improved after a short time but was very sleepy and couldn’t keep eyes open. Dry mouth, very red sunken eyes, waves of heat and nausea and heavy feeling in limbs for hours. Felling like I dodged a bullet as I recovered without medical attention and now I’m reading if it was Celiac Crisis I could have died 😳
  2. Celiac.com 07/02/2021 - Do you suffer from symptoms of abdominal pain, stomach aches, excess bloating, gas, diarrhea, fatigue, bone or joint pain, skin rashes, headaches, difficulty concentrating or irritability? Gluten, the major protein in wheat, barley and rye causes these symptoms in many people but most, including their physicians, are unaware that gluten is the cause and that a gluten-free diet may relieve these symptoms. Though there are diagnostic blood tests available for identifying gluten sensitivity, these test have limitations. Many physicians are unaware these blood tests are available, including genetic tests for the risk. Most physicians are also unaware of the broad manifestations of gluten sensitivity and fail to order tests that could diagnose the cause. Sadly, the condition often goes unrecognized and untreated when it is very common and reversible by simply following a gluten-free diet. No medications or surgery are required. Worldwide nearly 1 in 100 people have the most severe form of gluten sensitivity or intolerance known as Celiac disease though it is estimated that more than 90% are undiagnosed. Startlingly, many more than this, possibly 10-30% of people of northern European ancestry, have lesser forms of gluten sensitivity that causes symptoms that improve on a gluten free diet. The low carbohydrate diets have become popular because many have lost weight but they also frequently experienced dramatic improvements in general feeling of well being, increased energy, relief from fibromyalgia, joint aches, improved skin, fewer headaches, and improved digestive symptoms. However, many fail to gain full benefit because they don’t know they are gluten sensitive and have not completely eliminated gluten from their diet since gluten is present in so many foods that we eat. Gluten is insulinogenic, meaning it stimulates insulin release, and thereby promotes weight gain. Abnormal blood sugar regulation also often occurs. Some people will gain weight despite malabsorbing essential nutrients. It is now known that more than 10% of insulin dependent diabetics have celiac disease. What is not yet known is whether the celiac came first or the diabetes, but that they commonly occur together. Celiac disease is also commonly associated with other autoimmune conditions such as lupus, rheumatoid arthritis and thyroid problems. Celiac disease is a reversible cause of infertility, low birth weight infants, pre-term labor, and recurrent miscarriages. Untreated it is associated with a significantly increased risk of numerous cancers including all GI cancers and lymphoma. It is a common cause of unexplained anemia especially from iron deficiency and causes premature osteoporosis. Dietary elimination of gluten allows the intestine to heal so that absorption is normalized and symptoms are relieved. After five years of a gluten-free diet the cancer risk returns to normal as long as the individual remains gluten-free for life. Classic celiac disease is diagnosed by abnormal blood tests and an abnormal intestinal appearance on biopsy. Blood tests for celiac disease include antibody tests for gliadin (AGA), the toxic fraction of gluten; endomysial antibodies (EMA); and tissue transglutaminase antibody (tTG). High antibody levels to EMA and tTG are generally accepted as diagnostic for celiac disease though some individuals with celiac disease and most with lesser degrees of gluten sensitivity may have normal levels. AGA levels have, in the past, been considered very sensitive but not specific for celiac disease. Newer assays for AGA antibodies for gluten that has undergone a chemical change called deamidation that appears to be more specific for celiac disease (Gliadin II, Inova) may be as or more accurate than EMA and tTG antibody tests. However, lesser forms of gluten intolerance may be missed when any of these blood tests are normal or borderline and/or small intestine biopsy is normal or indeterminate. Stool antibody testing for antigliadin and tTG has been performed in research labs and published in a few studies. The commercial lab, Enterolab, now offers these tests though the former research gastroenterologist Dr. Ken Fine, who patented the test, has yet to publish the results of his findings in a peer reviewed journal. His unpublished data and the clinical experience of some of us who have used his test have indicated the tests are, to date, 100% sensitive for celiac disease. They are highly sensitive for gluten sensitivity of lesser degrees before blood tests or biopsies become abnormal but when symptoms exist. These symptoms reverse on a gluten-free diet instituted by those with abnormal stool antibody levels. Small intestine tissue obtained by biopsy during upper gastrointestinal endoscopy has been considered the “gold standard” for the diagnosis of celiac disease since the 1950s. However, recent studies have demonstrated that some people with gluten sensitivity, especially relatives of celiacs with few or no symptoms, may have changes from gluten injury in the intestine that can only be seen on a small intestine biopsy with special stains not routinely used, or on electron microscopy done in the research setting. Immunohistochemistry stains can detect increased numbers of specialized white blood cells called lymphocytes in the intestinal lining tips or villi as the earliest sign of gluten induced injury or irritation. Electron microscopy also reveals very early ultrastructural changes in some individuals when all other tests are normal. According to published research, when people are offered the option of gluten-free diet based on these abnormalities they have usually responded favorably, whereas those who continued to eat gluten often later developed classic celiac disease. What these studies suggest is that a “normal small intestine biopsy” may exclude celiac disease as defined by strict criteria but it does not exclude gluten sensitivity, a fact appreciated by many individuals who ultimately started a gluten-free diet based on their symptoms, family history, suggestive blood test or stool antibody test(s). Those few physicians who appreciate the concept of the spectrum of gluten intolerance or sensitivity are outnumbered by the medical majority that continues to insist on strict criteria for the diagnosis of celiac disease before recommending a gluten-free diet. Physicians either unfamiliar with the research on celiac or who are holding onto the strict criteria for celiac as the only indication for recommending a gluten free diet unfortunately often leave many gluten sensitive individuals confused or frustrated. Some seek answers on the Internet or from alternative practitioners. Many have their diagnosis missed, challenged, or dismissed. Others are misinformed or receive incomplete information. As a result many may fail to benefit from the health benefits of a gluten-free diet because they are advised that it is not required because they have normal blood tests and/or normal biopsies. Another source of confusion lies in the knowledge that certain genetic patterns are present in over 90% of individuals with celiac disease. Testing for such specific blood type patterns on white blood cells known as HLA DQ2 and DQ8 is increasingly employed to determine if a person carries the gene pattern predisposing to celiac disease. Some use the absence of these two patterns as a way of excluding the possibility of celiac disease and the need for testing or gluten-free diet. However, there are rare reports of classic Celiacs who are DQ2 and DQ8 negative. Moreover, recent studies indicate other DQ patterns may be associated with gluten sensitivity though very unlikely to predispose to classic celiac disease. Testing for all the DQ patterns has been advocated by Dr. Fine based on his experience with stool antibody testing that has revealed that the other DQ types are associated with elevated levels, symptoms, and positive response to gluten-free diet. According to his unpublished data, all the DQ types except DQ4 are associated with a risk of intolerance to gluten. Testing for the DQ types allows a person to determine if they carry one of the two high risk gene types for celiac disease or the other “minor” DQ type associated with gluten sensitivity but low risk for celiac disease. Enterolab also offers the stool testing for gliadin antibodies and tissue transglutaminase antibodies as well as several other stool tests for food intolerance or colitis. Though not widely accepted, these tests have gained favor with the lay public as an option for determining sensitivity to gluten or other food proteins, either despite negative blood tests and/or biopsies, or in place of the more invasive tests. Most recommend the accepted blood tests and small bowel biopsy for confirmation of celiac. The favorable reports in the lay community have been overwhelmingly positive though they can’t be subjected to peer review by the medical community prior to the publication of Dr. Fine’s data. Physicians open to the broader problem of gluten sensitivity are reporting these tests helpful in many patients suspected of gluten intolerance with negative blood tests and/or biopsies, though some are not certain how to interpret the tests. The national celiac organizations have difficulty commenting on their application without published research though a recent article in the British Medical Journal did show stool tests highly specific for celiac. Dr. Fine’s has publicly commented that his unpublished data demonstrates those with abnormal stool tests indicating gluten sensitivity overwhelmingly respond favorably to a gluten free diet with improvement of symptoms and general quality of life. There is no agreed-upon definition for gluten sensitivity or intolerance, especially for those who do not meet the strict criteria for celiac disease yet may have abnormal tests and/or symptoms that respond to gluten-free diet. Those individuals become confused when they realize that because they aren’t diagnosed with celiac disease, they don’t know where to turn for more information. Consensus in the medical community on definitions and more research in this area are greatly needed.

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  4. Celiac.com 01/18/2021 - I remember the exact moment I first heard of celiac disease. I was sitting on a bed at the University of New Mexico Hospital, on the phone with my dad. My seventeen month-old daughter Mikaela lay listlessly in a metal crib across the room. Her limbs were emaciated and her belly swollen from starvation, after over a month of food had passed through her completely undigested. At least three weeks had passed since she'd last walked. By the time we'd landed here, at our third hospital, she just laid and stared, too weak to sit up or even cry anymore. Only the frequent blood draws and IV needles elicited any reaction from her now—heartbreaking screams I often had to leave the room for. It was at one of these blood draws earlier that evening that I first heard the word "celiac" uttered, passed between the technicians and barely caught by my exhausted ear. On the phone with my dad later, I mentioned that blood draw, mentioning it mostly because it had been such a bad one—they couldn't find a vein, it had taken forever, and it seemed like they'd taken a lot of blood. I must have mentioned the word "celiac," though, because my dad called me back not long after to tell me to look up celiac disease. And there on the internet, in neat bullet points, Mikaela's symptoms were listed to a tee. By the time a doctor came in to tell us the results the next day, we already knew what the news would be. But we didn't realize at the time that Mikaela was no ordinary celiac patient. The First Hospital We were only two weeks into 2013, with a healthy sixteen month-old daughter, when we saw the first sign that something was wrong. It was January 19th, Martin Luther King Jr. Day Weekend, and we were in the small town of Chama, New Mexico, for a local ski race. My stepmom, Mary Ann, is in charge of the event, and after the usual busy months preceding the ski race, my family and I had had a fun and relaxing day in the mountains participating in cross-country ski events and playing with our bundled-up baby daughter. Although Mikaela had a history of being a colicky baby, she had always had good energy and enthusiasm, and I remember this weekend being no different. After eating a spaghetti dinner that evening, my husband, Trever, picked Mikaela up and trotted her around the room in his arms. Mikaela laughed and laughed. And then she threw up. Afterward, she was in good spirits and clearly wasn't sick. My dad, Patrick, who has a medical degree, was sure it was related to the copious amounts of milk she'd drunk right before we'd left for dinner. Another family friend, who had a daughter three years older than Mikaela, told me these things happen to young kids, and oftentimes you never find out why. I was uncertain, but felt reassured. That night, however, Mikaela had an episode of diarrhea so bad that it made a mess of her pajamas and crib. It was pure liquid, and contained entire chunks of grapes, complete with the peels. I was freaked out, but again, Mikaela had eaten lots of grapes the evening before, and I figured that combined with her upset stomach from the milk, she was just having some sort of brief stomach bug. The three-hour drive back home was brutal. She had that same diarrhea at least twice more. And that night, she threw up again. Over the course of the next week, she threw up every night, usually in her crib, and continued to have diarrhea once or twice a day. And every time, there were undigested chunks of food. Because Mikaela had no fever and no other symptoms of illness, I was convinced her problems were due to something she'd eaten. I spoke with a friend who'd had a baby with acid reflux and other allergies. The symptoms sounded similar, so I decided to take Mikaela off of dairy products for a week and see if anything changed. The vomiting stopped, but the diarrhea didn't. It was at about this point, a week and a half after her first symptom, that she started losing energy. She was walking less, and I could tell she was losing weight. Still figuring it was a bad stomach bug, or something she had eaten that was disagreeing with her, I brought her to the doctor, expecting to be told she'd get better in a few days and maybe be sent home with a prescription. Instead, she was sent to the hospital with severe dehydration and low blood sugar (34). She had dropped almost a pound since her last weigh-in two months earlier, to 18 pounds. Once she was at the hospital and hooked up to an IV, she cheered up again. The hospital gave her a stuffed animal she loved, which we affectionately named Doctor Hops, and we saw her smile again for the first time in a week. The week before her first hospital stay, it had been increasingly hard to find foods Mikaela would eat. At 17 months old, she was learning that food was hurting her, and already becoming afraid to eat it. Ironically, and sadly, she was living almost exclusively on saltines and graham crackers—very high sources of gluten that were unknowingly just making her sicker. But with her weight loss and her increasingly sensitive stomach, Trever and I were just happy we could get her to eat anything at all. At the hospital, they had little cups of vanilla ice cream that Mikaela fell in love with. Because I figured Mikaela's problem had been dehydration and low blood sugar, I let her eat them. She continued to have diarrhea in the hospital, which the doctors assured me would clear up soon, but she didn't throw up again so I figured the ice cream was in the clear. I was wrong. Almost as soon as we arrived back at our house, two days later, she threw up again. Alarmed and scared, I called the hospital back right away. They thought she might still be having a reaction to dairy, and told me it was most likely a result of all the ice cream she had eaten. They told me to keep an eye on her and call my doctor back if it continued. After I hung up the phone, I saw that Mikaela was back in good spirits after Trever had cleaned her up, so I knelt down and held out my arms. Mikaela tried to walk toward me. She was still so weak she only managed about three steps before falling and hitting her head on the kitchen floor. It would be the last time I'd see her walk for over a month. The Second Hospital It was at this time, between the first and second hospital visits, that I found out I was pregnant with my second child. Trever and I had long been excited about giving Mikaela a little sibling, but right now, with our first child so sick, it was hard to even think about a new child growing while the other one declined. I remember going in for a blood test and telling the nurse that my daughter, sitting in her stroller, had been sick, saying it like it was an ordinary thing but knowing in my heart that it wasn't. Our chief focus the week after Mikaela's release from the hospital was making sure she drank enough that she wouldn't end up back there. Mikaela and I visited her pediatrician every other day, often spending over an hour waiting to be fit in around the normally-scheduled patients. Mikaela, completely uninterested in walking and growing steadily weaker, would sit listlessly in my lap. I spent our time taking selfies of us together, doing anything I could to wring a smile out of her again. In less than three weeks, I could see barely a shadow of the vibrant baby we'd raised. Her growth charts showed a decrease of weight from her regular visit two months earlier: she had dropped from 15th percentile to 2nd. But one thing alarmed her doctor even more. Neither her height nor her head circumference charts showed any growth for the last four months, since she'd been 13 months old. The doctor wanted Mikaela to see a neurologist for her walking and an endocrinologist for her growth. More than anything, I remember feeling intense frustration that the doctor was fixated on this growth issue when Mikaela was so sick. I just wanted her to be healthy again, and thought we could figure out the growth charts afterward. With everything going on, it never occurred to me that this was an abnormal or serious issue. At her appointment that Friday, her doctor decided we could no longer wait to send her to a neurologist, because for a baby to stop walking for this long meant something serious was going on. She sent her to a different hospital. A neurologist tested her reflexes and declared that nothing was wrong with her legs. A doctor took an x-ray of her belly, which was now noticeably swollen from her constant diarrhea, and told us Mikaela was very constipated. They did an enema. It was a miserable process, and there was no noticeable improvement afterward. The second day at the hospital, I brought her to the playroom, hoping to rekindle her interest in playing, and propped her standing at a play table. Then, as she became half-heartedly distracted by the toys, I backed slowly away to see if she'd remain standing on her own. She did, but it was less than a minute before she turned and saw that I'd moved. A look of fear flashed across her face, and her legs buckled beneath her. Whatever was going on with her, I knew it was far from "common." A doctor witnessed the event in the playroom, and Mikaela was taken for an ultrasound of her hips. There was some excess fluid in one of them. Mikaela was diagnosed with toxic synovitis—built-up fluid in the hips after a virus, which can sometimes affect walking. Reassured that they'd figured out what was wrong, the doctors told me it should clear up on its own within five days, possibly faster if we gave her infant Ibuprofen. Once again, Mikaela was sent back home. The Third Hospital Although the new diagnosis gave me hope at first, we saw absolutely no sign of improvement. In fact, Mikaela continued to get worse. She was painfully thin, with a protruding backbone and ribs. Her belly was so distended that she looked pregnant. Her cheekbones stood out sharply in her face. Her energy was nonexistent. She could no longer pull herself to a sitting position or grab my finger within her fist. She basically didn't move except when I carried her. For the first time, I began to fear she could actually die from this. But I felt the hospitals had done all their tests, and I didn't know what else they could do if I brought her back. I was torn apart by the terror and helplessness of the situation. Another thing that worried me was that we were on the cusp of a holiday weekend (President's Day), and I knew that it would be more difficult to get in and see her doctor if we had an emergency where she stopped breathing or something. I called my dad, who had visited the previous week and seen her condition. He felt as helpless as I did, but told me that after he ‘d related her story to a friend who'd lost a baby to SIDS, the friend had said, "That child needs to be in a hospital." I spoke to my best friend and she told me something that has stuck with me ever since: "You are her champion. You are the one who has to fight for her. You're all she has." When I hung up the phone, I knew what I had to do. I was going to bring her back to the hospital, this time on my own terms, and I wouldn't allow her to be discharged until we had a correct diagnosis and could see her health improving. It was 3:00 p.m. on Friday when I called her doctor's office and told them I needed to check my daughter back into the hospital. Her regular doctor was out of the office, but a different doctor called me back and said he'd sent Mikaela's info along to the UNM Hospital Pediatric ER, and to take her straight there. I showed up at the new hospital with Mikaela in my arms early Friday evening. Trever finally caught up with Mikaela and I in the ER waiting room, surrounded by the victims of that year's particularly bad flu season. Mikaela, too weak to fuss or cry, just lay in my arms amid the constant coughing and sneezing. Mikaela was checked in, and a couple doctors came to talk with us. I described the past three weeks as best I could. "I brought her to the doctor because she'd been having diarrhea for over a week. We kept seeing the doctor the week after her first hospital stay because she still wasn't walking." At one point, one of the doctors stopped me and said, "You can stop justifying everything, because this is all very unusual." The other doctor told us that we had finally come to the right hospital, because he said being a university hospital with actively studying interns, they got all the weird cases. The night that followed was a long one. Since the hospital was completely full from flu season, Mikaela and I were stuck into a space the size of a closet, with barely enough room to squeeze between her hospital crib and my bunk. In the middle of the night, one of the doctors from earlier returned with her growth charts, which he'd gotten from her records. He said, "I can't understand why either of those hospitals would have released her without addressing why her growth charts look like this." Mikaela was seventeen months old, but she'd basically stopped growing at twelve months. We were moved again in the early hours, to a curtained-off section of a room where a baby coughed horrendously the whole morning and I sat half-comatose in a chair next to Mikaela's crib. Occasionally, I'd pull Mikaela out of her crib to hold her, but she didn't react in any way. She dozed on and off, but it was hard to tell, because she didn't act any differently awake than when she was asleep. We tried to keep her hydrated and to feed her, but anything we gave her almost automatically came out again through her diaper. The next day, Mikaela was all over the hospital for testing. My mom had joined us, and tried to comfort me. My dad, who lives three hours away, kept calling to check on her and suggest tests to run and tell me what to say to the doctors. "Tell them she's starving to death," he said. At this point, sleepless and scared out of my mind, I heard an accusation in his tone that we had somehow caused this by not feeding her enough or feeding her the right things. It was an accusation that didn't exist—my dad was simply laying out the truth, and was as scared as I was—but I felt overwhelmed and sick from my pregnancy and couldn't deal with it anymore. I hung up the phone. I cried and cried. Mikaela went through two MRI's and a lumbar puncture. One thing they suspected was a brain tumor, and they also wanted to see if anything was wrong with her spine. Not only was the strength in her arms and legs gone, but she had absolutely no reflexes in her legs, which convinced the neurologists something was wrong with them. The tests found nothing wrong with Mikaela's brain or spine, but one doctor suspected a condition called Guillian-Barre, which can sometimes affect walking after a virus. But the tests weren't conclusive, and the symptoms didn't quite match up. My dad and stepmom joined us at the hospital. My dad was very apologetic, explaining that he never once meant her condition was due to anything we had done. I told my mom and dad about my pregnancy, and they and my husband helped out by accompanying Mikaela to the tests my pregnancy kept me from being present for. Over the next couple days, as test after test was run and Mikaela's IV's were changed out and unending blood tests were taken, Mikaela continued to get worse. Nurses would come in to weigh her every few hours. Her weight had dropped below 17 pounds, and we struggled to raise it again. Her magnesium, potassium, and folate levels were dangerously low. The diarrhea was constant. On our third day at the hospital, Mikaela puffed up like a balloon. The change was startling after her emaciated state. The doctor grimly told us it was a result of low albumin—a protein made by the liver. Albumin normally helps keep fluid in the bloodstream and out of other tissues, but in cases of severe malnutrition, like Mikaela's, the fluid escapes the blood and causes the body to swell. Mikaela's body had used up all its glycogen, all its fat, all its stored protein and its muscles. I didn't know it at the time, but this intense swelling is one of the last stages of starvation. On our fourth or fifth night there, with Mikaela barely clinging to consciousness, a team of techs came in and took one of their longest blood draws yet. They took blood at all hours, and part of me just wanted Mikaela to get some rest, but I was also afraid every time she closed her eyes that she wouldn't open them again. This blood test was so disruptive and late in the evening that I felt the need to recount it over the phone to my dad, somehow passing along that barely-snatched word I'd heard during the cacophony: celiac. It wasn't long after that he called me back and told me I needed to look up celiac disease. So I did. And it wasn't like toxic synovitis or Guillian-Barre, where it was a stretch to make the symptoms match. I knew instantly what I was looking at. I was looking at Mikaela. The Diagnosis Any Google search will show you what I found. Chronic diarrhea. Abdominal pain. Vomiting. Bloating. Fatigue. Decreased appetite. Weight loss. Failure to thrive. By the time a pediatric gastroenterologist came in the next morning, my whole family was waiting, sure we knew what the news would be. It was almost the first thing out of the doctor's mouth: "I think she has celiac disease." The blood tests not only confirmed the diagnosis, but hinted at how severe her case was. Non-celiacs have only a small amount of antibodies called tissue transglutaminase (or tTG's) floating around in their blood—usually at a level of below 20. Mikaela's tTG level was somewhere over 250—off the measurable charts. In a person with celiac disease, the body turns gluten into a protein that attacks the small intestine. Mikaela had stopped growing at the age of 13 months, shortly after she quit breastfeeding and was introduced to gluten for the first time. Amazingly enough, she didn't drastically start to decline for another two and a half months, when her lack of nutrients finally caught up to her and started shutting her systems down. When the pediatric gastroenterologist took a biopsy of her small intestine, he found that the villi inside lay completely flat, no longer able to catch and digest food. Not only did Mikaela undoubtedly have celiac disease, she was at the end of the spectrum for the most severe cases. She was taken off gluten immediately, and the doctors worked on getting all of her vitamins and nutrients back up. We knew it might take a while to start seeing improvements. But we were shocked. Within 24 hours of being off gluten, Mikaela was making eye contact again. Within three days, she had already regained enough strength to pull herself to sitting. I remember the first time we saw her smile after a month of listlessness. One of the nurses had a light-up dinosaur on her lanyard, and Mikaela reached out for it with a tentative smile. It was the most beautiful thing I'd ever seen. She was showing interest in the world again. And four days after her diagnosis, Mikaela took a couple shaky steps across the hospital playroom on legs so skinny, they didn't seem capable of supporting weight. Our daughter was coming back to us. Mikaela was discharged from UNM Hospital after just over two weeks. Although she still suffered from diarrhea and low weight, she was walking again, smiling again, and in improving health. Trever and I were certain she would fully recover within the next few months on the right diet. It was true we wouldn't face the same level of decline that had almost killed her at 17 months. But Mikaela would face unexpected complications with her celiac disease over not just the coming few weeks…but the next several years. The Aftermath That summer was a rocky one, in terms of her health. Mikaela remained dairy-free for the next several weeks. Her baby brother grew bigger in my womb. We sold our house and lived with my mom for a month and a half as we waited on our new house to pass inspections. We're not completely sure to this day, but we think Mikaela ate a piece of cat food (which is very high in gluten) around the time we moved in. For the next month, we fought diarrhea so bad it threatened to put her back in the hospital. But she still had frequent doctor's appointments, and through careful monitoring and hydration, we managed to keep her healthy enough. She regularly saw a developmental counselor, who helped her get back on track after her delay. She still hadn't started growing again, and her belly was still very distended. On the plus side, her tTG's were on the charts by July—from greater than 250 to 167. Another antibody that had tested very high at the time of diagnosis—deamidated gliadin antibodies, or IgA's—had fallen from 60 all the way to <.2. This number, at least, read perfectly normal now, and was a pretty clear indicator that we were successfully keeping gluten out of her body. By September, when she turned two, her growth charts had finally started showing improvement in her height as well as her weight. She was also able to tolerate dairy again, and her diarrhea was under control. Her little brother Alexander was born in October. After our scare that spring, we felt truly lucky to have two healthy children in our lives. But when she took her blood test a month later, we were shocked to find out that her tTg antibodies had gone up again—all the way back off the charts. Her doctor was puzzled, but Mikaela was healthy and her diarrhea was gone, so he chalked it up to the fact that sometimes those numbers take a long time to normalize. Only a few months later, he left UNM Hospital, never realizing that Mikaela was going to be a unique case. We were delayed by the position being refilled, and waited to see if Mikaela's blood work would come down on its own. But a year later, the tTg's were still off the charts, even though her iGa's remained promisingly low. Her stomach was still distended, and by this time, we'd passed it off to a body type issue and hardly noticed it anymore. In April 2015, the new doctor, a pediatric gastroenterologist from England, decided to take another endoscopic biopsy to see if the inside of her small intestine was showing improvement. The results weren't as good as we'd hoped. After almost two years on a gluten-free diet, the villi in her small intestine had gone from severe blunting to moderate blunting. It was clear that a normal gluten-free diet wasn't sufficiently healing her. The doctor brought up a possible diagnosis of refractory celiac disease. This is a rare form of celiac that is resistant to a regular gluten-free diet. 1% of the population is said to have been affected by celiac, and refractory celiac disease only affects about 1% of those diagnosed. Not only was this strain of the disease rare, but it's virtually unheard of in children. It can also be a very dangerous diagnosis; there are two types of RCD, and one of the types leads to cancer. Fortunately, Mikaela's bloodwork suggested that even if she did have RCD, she wasn't likely to have the second type. However, even the doctor doubted this diagnosis, because patients who suffer from RCD are in poor health and have trouble keeping their weight up. Mikaela clearly didn't fit this profile. Even though Mikaela was healthy on the outside, the doctor was concerned that leaving her small intestine that damaged could cause her health problems later in life, and even increase her risk of cancer. She wanted to start her on a steroid that would suppress her immune system and allow her gut to heal. I was very reluctant to put my healthy three year-old daughter on steroids, and suggested we cut back her diet to eliminate even the slightest chance of gluten cross-contamination. The doctor agreed it was worth a shot, so Trever and I proceeded to cut all processed foods out of Mikaela's diet. This meant grinding our own flour out of rice at home, making oatmeal from nuts instead of oats, buying only uncured meats, and no longer purchasing foods with more than four ingredients, to name just a few changes. It wasn't an easy diet to adjust to, but with the help of paleo cookbooks and my dad's excellent cooking skills, we were able to find a variety of recipes and foods for our family. We were fortunate that Mikaela was a non-picky eater, and adjusted to these dietary changes with no fuss. Outwardly, we saw no changes; she appeared to be a strong and healthy young girl with a big tummy and a vivacious attitude. After six months on her new and stricter diet, Mikaela's tTg levels were still off the charts, and she was put on iron for perpetually low ferritin levels. The doctor decided to give her another half-year to show improvement, but when labs were taken again in May 2016 and her levels remained the same, she put Mikaela on a six-month stint of corticosteroids called Budesonide. As I'd dreaded, she became aggressive toward her younger brother, and more disagreeable with us. She was constantly hungry and started retaining water, which made her body and face appear puffy and bloated. I hated the steroids just as much as I'd feared. They did succeed in reducing the tTG antibodies, but it was slow and painful progress. After three months, they were down from over 250 to 208, then at six months, they were at 161. It had taken six months of steroids to get them as low as they'd gotten on their own shortly after her diagnosis, before they had climbed again. So what had changed? Another biopsy was done in December 2016. There was improvement over the one from April 2014, with only mild villous blunting now. With her prescription for Budesonide done, the doctor decided to see if she'd continue improving without the steroids. But sadly, by August of 2017, the tTG numbers had soared off the charts again. I was really upset by the news, sure this meant the doctor would see that steroids were the only thing that worked and put Mikaela back on them. It was at this time that UNM Hospital hired a gastroenterologist who specialized in celiac disease. At our first appointment with him, he took one look at Mikaela and said there was no way she needed to be on steroids. She was entirely too healthy. Unconcerned, he spent another year monitoring her bloodwork then decided to schedule another biopsy to see how things looked. It was clear that despite her high numbers, he expected to find nothing wrong based on her great outward health. But this was not the case. Her small intestine still had villous blunting. When he called to tell me the results, he asked some questions about her diet, especially now that she'd started kindergarten. But I could tell in his voice that he didn't think the answers lay there, since she'd struggled with this for over four years now. My doctor called me back a few weeks later to say he'd met with another celiac expert from the University of Chicago, named Dr. Guandalini. Reassuringly, this doctor had met other rare patients like Mikaela—asymptomatic on the outside, but not fully healing on the inside. He told my doctor that a dairy-free diet had helped in these cases. So we decided it was worth a shot. As with every other step we'd taken, we didn't expect to see any differences outwardly. But I noticed, quite by surprise a couple months after starting the diet, that the distended belly she'd had since her diagnosis at 17 months was gone. The first thing I thought was that it was due to her taekwondo or other physical activity. But Mikaela has always been an active child, ever since she felt good again, and the difference in just two months was dramatic. Until that point, I'd never even considered that her stomach was related to her celiac disease, or thought much about it at all beyond thinking it was just the way she looked. A month later, she went in for another blood test. I was optimistic that the outward change would mean her tTG's would be below 250 again—maybe even as low as they'd been on steroids, in the 160 range, even though it had only been three months. When I called the nurse, the first thing she said was, "Her tTG levels seem to be elevated. Has she been exposed to gluten?" I said, "How high are they?" She said, "49." I almost dropped the phone. Her antibodies had fallen by over 200 in three months! At long last, we finally knew why her numbers had dipped briefly in the aftermath of her diagnosis before climbing back up again—it was because we'd reintroduced her to dairy. Either because of the destruction in her gut from the gluten, or because it was something else she'd been born with, this intolerance to dairy had been keeping her tTG levels extremely high and keeping her from fully healing. Mikaela has been gluten-free for seven years now and dairy-free for two and a half years. She is healthy and thriving, and rarely has stomach issues at all anymore. She had another endoscopy just last month, and everything came out perfectly normal for the first time in her life. The diagnosis of Celiac disease saved her life, and I will forever be grateful to the doctors at the University of New Mexico Hospital who figured it out in the nick of time. Mikaela lives a full life now, thanks to everything we've learned since that day back in 2013.
  5. Hi everyone, I’m new to this website and Celiac’s. My doctor ordered a blood test for celiac’s last month when I mentioned a few of the symptoms I was experiencing. My TTG IgA came back as a 10 with the lab results saying anything above 4 was positive. However, it came back negative for EMA. My doctor ordered an endoscopy based on the results (the endoscopy is next week). I’m not really sure what to expect though. After researching, I notice that people often have way higher TTG IgA than I did. So I don’t know if anything else could have caused my positive result on the first test. My symptoms are chronic fatigue, spastic bowel movements about three times a month, and canker sores once or twice a month. Last year, I also developed an issue where I burp all the time (so much so that it is embarrassing). No amount of gas-x or antacids help with that symptom either. I was diagnosed with IBS when I was in college four years ago, but never even knew about Celiacs until my new doctor suggested it last month. Does anyone have a similar story or can prepare me for what to expect? Thanks!

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  7. Celiac.com 10/09/2019 - The American Gastroenterological Association's new guidelines for evaluating chronic diarrhea in clinical practices offer recommendations on the best laboratory tests for excluding other diagnoses when patients have possible functional diarrhea or diarrhea-predominant irritable bowel syndrome. When evaluating patients with chronic watery diarrhea, "it is important for health care providers to determine whether it is being caused by organic disease or a functional disorder, such as functional diarrhea or irritable bowel syndrome with diarrhea,” says Walter Smalley, MD, MPH, of the Veterans Affairs Tennessee Valley Healthcare System and Vanderbilt University School of Medicine. Celiac disease would be another factor to check, and the new AGA guidelines include a recommendation to test for IgA tissue transglutaminase, along with a second test for detecting celiac disease via IGA deficiency. The AGA recommended the following seven steps to guide laboratory testing in patients with chronic diarrhea: Test for markers of inflammatory conditions — such as IBD — like fecal calprotectin or fecal lactoferrin. The AGA suggests against using erythrocyte sedimentation rate or C-reactive protein to screen for IBD. Screen for Giardia. Screen for O&P or parasites, other than Giardia, only in patients with a travel history in high-risk areas. Test for celiac disease with IgA tissue transglutaminase and a second test to detect celiac disease in the setting of IGA deficiency. Screen for bile acid diarrhea. The AGA made no recommendation on the use of currently available serological tests for the diagnosis of IBS. The new AGA guidelines are aimed at patients with a working immune system, who suffer watery diarrhea for at least 4 weeks. Patients with bloody diarrhea, diarrhea with signs of poor fat absorption, features of alarm systems like weight loss, anemia and hypoalbuminemia, family history of inflammatory bowel disease, colon cancer or celiac disease, and patients who have traveled to areas where diarrhea-related diseases are coming are excluded from the guidelines. Read more in Gastroenterology. 2019. doi:10.1053/j.gastro.2019.07.004.
  8. Celiac.com 08/12/2019 - People with certain types of diarrhea may respond to antihistamine treatment, according to a recent case series published online in Annals of Allergy, Asthma & Immunology. Up to 5% of adults suffer from chronic diarrhea, while a small subset of those patients suffer from idiopathic postprandial diarrhea (PPD)--diarrhea with sudden onset, and unknown origin. Diarrhea is one of the most common complaints and symptoms for people with celiac disease. "Antihistamine-responsive PPD is seen in patients with chronic idiopathic urticaria and/or dermatographia and can be distinguished from mast cell activation syndrome (MCAS)," write Yasmin Hassoun, MD, University of Cincinnati, Ohio, and colleagues. The team describes cases of idiopathic PPD in five patients aged 26 to 63 years with a diarrhea duration of 8 weeks to 13 years. All five patients had concurrent dermatographia. Three patients (two female and one male) also had a current or prior history of chronic urticaria, and three women had a current or previous history of angioedema. None of the patients had experienced an initial triggering event such as viral illness. In all five cases, diarrhea occurred only after meals or snacks, and within 3 hours of eating. None of the patients showed any evidence of food allergy or food intolerance. The team screened four of the five patients for food-specific IgE, and all four tested negative. Three of the patients eliminated lactose and other common allergens with no change in symptoms. The team conducted tests for anti-tissue transglutaminase IgA and serum tryptase in four patients, 24-hour urinary prostaglandin F2α in three patients, and 24-hour urinary N-methylhistamine in two patients. All test results came up normal. Four patients also received upper endoscopy and colonoscopy, which revealed lesions in two patients. One 55-year-old woman had lymphocytic colitis and a 63-year-old woman had gastric inflammation and ulcers. However, none of these pointed to any underlying GI condition that might to explain the chronic bouts of diarrhea. Until researchers can conduct more randomized, placebo-controlled trials doctors should consider PPD when assessing "patients presenting with food intolerance after excluding food allergy and other gastrointestinal (GI) disorders," adds Dr. Hassoun. Read more in the Annals of Allergy, Asthma & Immunology
  9. Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective. Thanks
  10. Hello all, I really need someone to help me understand my test results/symptoms, etc. I have been having diarrhea for 4+ months, have slowly been losing weight and have had really itchy legs. I have pain in my lower right side intestine and my intestine, as it has gotten worse, has felt pretty raw. I thought I had a tapeworm, went to a doctor and got a ton of tests. The only thing abnormal was my celiac panel. My results are below, if someone could give me more insight into what they mean, I would really appreciate it. TO carry on, I finally went off gluten about a week and a half ago. Immediately, I had stopped having bad diarrhea and for that to carry on for 6 days that was a big deal. So, I acknowledged that I probably am celiac and went to the store and redid my whole pantry. I have been eating all gluten free but as of this week, I'm gassy, having diarrhea really bad, having TONS of stomach pain and really discouraged. I don't have an appointment with a gastro doctor for another month...and I'm so worried. Can someone give me some insight?? Gliadin (Deamidated) Ab (IgG) 2 U <20 U Reference Ranges for Gliadin (Deamidated Peptide) Antibody (IgG): <20 units Antibody Not Detected > or = 20 units Antibody Detected Gliadin (Deamidated) Ab (IgA) 5 U <20 U Reference Ranges for Gliadin (Deamidated Peptide) Antibody (IgA): <20 units Antibody Not Detected > or = 20 units Antibody Detected Tissue Transglutaminase Ab, IgG 7 U/mL U/mL <6 No Antibody Detected > OR = 6 Antibody Detected Tissue Transglutaminase Ab, IgA <1 U/mL U/mL <4 No Antibody Detected > OR = 4 Antibody Detected Endomysial Screen NEGATIVE NEGATIVE Endomysial Antibody Titer TNP titer titer Test Not Performed. Screening test Negative or Not Detected. Titer not performed. Immunoglobulin A 230 mg/dL 81 - 463 mg/dL REPORT COMMENT: FASTING:NO
  11. Hello everyone, I am new to join this forum, though I have been look at your posts since I was diagnosed in September (it's now end of October). Just wanted to introduce myself. My name is Lori. I'm 43, female, and have had stomach issues for my whole life. As a child, I was ALWAYS tired. My doctor couldn't figure out what was wrong with me and just told my mom to get me into sports to help tire me out at night. I missed a lot of school because I was sick quite a bit, but got good grades so no one seemed to be bothered by it. Over the past 2 years my symptoms were consistently getting worse. Just before I had my gallbladder removed (gall bladder attacks that were getting longer), I started vomiting on a regular basis. Didn't seem to matter if I had an empty or full stomach or if I felt okay. I would be vomiting at least 2 times a week and chewing on ginger tablets constantly. Diarrhea also got worse but I didn't think much of it because I had been diagnosed with IBS when I was 20 and the celiac biopsies came back negative. I was taking 2 to 4 Immodium gel pills every day just to get through work. My doctor did numerous tests to find out why I was so sick all the time but no positive results for anything. She decided to send me for another gastroscopy and colonoscopy since it had been over 20 years since my last one. There, the doctor found out that I have a sliding hiatus hernia, ulcers, and bile reflux. He also did some biopsies which came back "blunted villi" so he recommended that my doctor send me for celiac blood tests. Sure enough, they both came back positive. This after a psychiatrist told me I should be tested again - years ago when the depression medication didn't work and my inflammation levels were through the roof. Today I also found out I have osteopenia. I thought I had worked through the anger that I hadn't been diagnosed years ago (when it wasn't too late to prevent a lot of the issues I have now), but it has raised it's ugly head again. My question to all of you is, how did you get past the anger at all the missed/wrong diagnoses over the years? I would have gone back and insisted on the doctor doing something if I hadn't assumed I had IBS for over 20 years. Maybe I could have had children. Maybe I could have prevented the bone loss and hair loss. Also, did anyone find that their hair grew back? How long did it take? Happy to have found all of you! Lori Here are my symptoms/related illnesses: Depression (diagnosed at 19 with intermittent success with medication combinations) Chronic inflammation Joint pain Skin rashes Chronic fatigue B12 and Iron deficiency anemia for years - I have had to take strong supplements for over 20 years. Hair loss PCOS (but I still ovulate so I'm wondering if this is true) Insulin resistant/pre-diabetic Very overweight beginning in 20s with difficulty losing weight for years (except the time I eliminated ALL grains)
  12. Twenty-two years ago, I started getting these blister fluid filled bumps on my hands and feet. They would itch and then once they popped they became scaly. I went to the doctor and dermatologist, but no one could tell me what they were. I tried some creams that they'd prescribed, but none of them helped, so I just learned to live with it. I would always hide my feet during a breakout because the sores looked so horrible. Several weeks ago, I went to the doctor because I was feeling tired all the time. I have this "fog" in my head. It's like... my vision's a little clouded (even though nothing's wrong with my eyes; I've had that checked) and it's hard to concentrate on day to day activities. When it's really bad, I feel like I can't even carry on a conversation. Plus, I was having diarrhea almost everyday. The doctor ordered routine bloodwork and when looking in my records noticed that I'd frequently had a post nasal drip when I'd gone in for evaluations. All of my bloodwork was normal. I was ready to give up again when my primary doctor called me to schedule my routine physical. He wanted fasting labs done. Which I did and they were also normal. I decided to go gluten-free after I saw these results online, because when my daughter was going through her issues (that's a whole different story) I went gluten-free with her and the "fog" in my head actually cleared! I was about 2 weeks gluten-free when I saw my doctor and the fatigue, fog and diarrhea had subsided. The only remaining concern was the blister fluid filled bump on my foot. He took a look at it and said he thought he knew what it was! Dyshidrotic Eczema...He prescribed the strongest topical steroid and said to put it on whenever I feel an episode coming on. That's the thing, I can tell when I'm going to get it. I feel like I'm retaining water the day before... my skin feels tight. Since the diagnosis, I've been researching Dyshidrotic Eczema and it seems it's linked to allergies. I've seen a lot about nickel related allergies, but I've also seen a lot of people who've experience it posting about celiac disease or a gluten intolerance. I don't think I can even be tested accurately now that I've gone gluten-free. Does anyone have advice on how I should proceed? Has anyone experienced similar things?
  13. My daughter has her yearly GI specialist appointment in a couple weeks. She was diagnosed almost 3 years ago. She’s very strict with her eating but has still been having a lot of gut issues for at least the last 6 months. She spends a lot of time in the bathroom - usually diarrhea but occasionally constipation. She’s also very dizzy whenever she stands up or exercises. I was going to ask about testing for iron and other vitamin deficiencies but I wasn’t sure what other tests I should request. She did have Non-Hodgkin lymphoma a couple years before the celiac diagnosis and as a result had a bowel resection - so I may ask for an u/s just to recheck her bowels. Any other suggestions?
  14. i have been having health issues for a while so i'm finally giving up gluten to see if i'm gluten sensitive and if that's the issue. it's been 48 hours since i've had gluten and prior to this point i had been constipated for months. in the last two days i've gone 6 or 7 times. is my body getting rid of all the bad stuff like a detox? am i doing something wrong or is my body telling me this is right??
  15. ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions??
  16. Prologue I never know what to call a post. What Else Could it Be; Co-Morbidity in Celiac disease and what else could be causing your Celiac like symptoms or I had Celiac Disease and developed Pellagra. This is my story yours may be similar. I have tried to write as much as I could of this beforehand to summarize some of my experience and research since I was first serology confirmed a Celiac and why I think Pellagra explains if not all the complications a Celiac develops at least many of them seem common in undiagnosed Pellagra but I find formatting and links can be a challenge. This is not meant to be an answer to all your questions but a beginning, posterboy by God’s Grace. See post that follows “I had Celiac disease and developed Pellagra”. Good luck on your journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”. I had Celiac Disease and developed Pellagra I try and educate about how Pellagra can be confused for Celiac disease and/or GI problems like IBS, GERD, Ulcer’s, UC etc. after having received a Celiac diagnosis and my symptom’s improved greatly after taking Niacinamide (the non-flushing form of Niacin). And almost without fail people do not see the connection. They say but I have … . fill in the blank. They don’t see the connection. But if I say it this way maybe it will help you “I am a Celiac who developed Pellagra” or fill in the blank … . heartburn, IBS, UC, Chron’s etc. I named this post this because another board/forum member said as much in a thread post on this forum and it struck with me. She had the digestive problems of a Celiac but also the dermatitis issues of DH and her itching got better after taking Niacin. What we fail to understand often with any diagnosis there is continuum of disease/symptoms. Since this happens gradually you develop heartburn first then you have IBS, and Constipation and diarrhea then maybe an ulcer etc we don’t often see the connection. But all along it was the same disease in a more pronounced condition. If we catch it early enough say at IBS then the ulcer or UC might not develop. When we think spectrum of disease it helps us to understand these diseases’ can be and are more related that we often understand. They are all bound by STRESS. Do not all these conditions worsen when you are stressed does not the heartburn turn into IBS i.e. your constipation and diarrhea flare up? Yet we think of them as separate diseases Right? No there is a continuum of disease bound by STRESS and TIME. The longer the stress the more your symptom’s Right! You just haven’t stopped to think about the relationship. Relationship and time is important to a proper diagnosis. So how are these related? Our mucus membranes are always in a constant state of repair either of repairing or rebuilding what is broken or maintaining our bodies defenses. This takes energy and lots of it and one is not able to make enough energy to repair the lining of our stomach without enough Niacin and Pellagra develops. I am not even saying I have been cured of Celiac disease. I say my GI symptoms are in remission which leads me to Pellagra as a cause and effect relationship of stress and our environment — Epigenetics. I am saying I was/am a Celiac who developed Pellagra. The International Journal of Celiac disease notes that both Pellagra and Celiac disease does often occur in the same person. How do we know this? The Journal of Celiac in an issue entitled Celiac Disease Intestinal Heart and Skin Interconnections http://pubs.sciepub.com/ijcd/3/1/6/ when listing common aspects of both diseases’ says and I quote “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease.” Which also explains why a Genetic disease can increase in two or three generations because our stress changes our genes. There is a trigger. Stress — it is not your day to day stress. We can handle all that kind of stuff but TRAUMA lasting 3 or 4 more months at a time. Think when Celiac disease was first studied as a Disease? It was during and directly after WWII and I dare say a stressful time to say the least. Not to mention all the energy needed day to day to just survive. Europe almost starved after the war. So much so he U.S. government had to step in and help deliver/air drop humanitarian aid to Europe. It was called the Marshall Plan named after the man who devised the relief plan and it is credited with keeping Europe alive after WWII and averting another possible world war because of the infighting that would have developed from a starving Europe. 3 to 4 months is approx. the exact time we can store B Vitamins. Anything that triggers the fight or flight high energy response (TRAUMA) that depletes our bodies reserve’s. Stress is coincidently what Niacin helps us control. It (Niacin) helps control our stress response’s in the body without which cellular disfunction happens (are membranes brake down). Like the alternating constipation and diarrhea you have had for years if you have developed Celiac disease. Things like a Car Accident, difficult divorce, injury to our kids, extended care giving, surgery etc. can and often does trigger GI problem’s. And yes the stress of pregnancy. And it (STRESS) is common with with/before a pregnant lady gives birth triggering heartburn. A good example is pregnant women in their 3rd trimester often develop heartburn that’s goes away when the child is born. Those who are predisposed continue to have heartburn and GI problems because their body couldn’t meet their need. Half of pregnant women develop heartburn during pregnancy that goes away in all but about 1/3 of those who get heartburn when the child is born. Think of Heartburn as infant Celiac disease if it helps you to think in these terms. The older/longer the heartburn persists or the more GI symptom’s (heartburn/GERD/IBS, Constipation, diarrhea, ulcer etc) reoccur the more serious the conditions and diagnosis becomes. The genetic component is that 1/3 are predispose to high Niacin consumption when stressed. It is those1/3 of us who had Pellagra and Celiac disease developed is who I am trying to help. But it should be noted up and until your Celiac diagnosis things like the Ulcer, UC, IBS etc can/could be helped also if Pellagra is the Parent diseases and all these other diseases are its children. Co-Morbidity is the term. A B-Vitamin deficiency can be inherited but does not have to be permanent. It is a reversible condition. See this new research that ties eczema in babies to low Niacinamide in the mother during pregnancy. Nicotinamide is usually the way Europeans spell Niacinamide. Both names refer to the same amide form of Niacin. https://www.sciencedaily.com/releases/2016/09/160923092924.htm The very definition of a Vitamin (especially in the case of B vitamins) a vital (life giving) nutrient/substance needed in a minimum amount without which we become sick. Your continuum of diseases are completely reversible if your symptom’s look like Pellagra (digestive, dermatitis and dementia’s) in nature and your respond (BURP in 3 to 4 months) to Niacinamide you might have Pellagra and the doctors have not figured it out in a clinical setting (they are sub-clinical) yet or at least you (may) have Pellagra and Celiac Diseases Co-Morbid. If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. Really there are 4 D’s more on that latter but we are trying to catch Pellagra before it gets that far. The International Journal of Celiac Disease notes this co-morbidity when they note in 58% of Celiac -- Pellagra ALSO occurs. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting their paragraph 3 on the Co-Morbidity of Celiac and Pellagra together 3. Pellagra and Celiac Disease “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]. “ 58% of the time (that is a majority folks) Celiac’s go on to develop Pellagra too! Or is it really the other way around? Have you had Pellagra all along and now you have developed Celiac from it (Pellagra) undiagnosed. The later may be more true than you know. Ask your friends if they have ever heard of Pellagra. I dare say it a low percentage that knows Pellagra a once rampant disease especially in the rural south can cause many of the GI problems you are now experiencing as a Celiac disease patient or even the Non-Celiac Gluten Sensitivity (NCGS) patients that have not yet received a Celiac diagnosis. And it maybe a lower percentage today that know what Pellagra (or even that they could have it) is than have heard of Celiac disease or think they have Celiac disease instead. Think beri beri, rickets, scurvy etc all complex diseases completely forgotten about today that were/are completely reversible conditions. As Dr. Heaney points out about Pellagra today! That as Creighton’s University Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine post here at this link http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ The knowledge of Pellagra (if you have ever heard of it) is in that same state of forgotten diseases now thought relegated to the history books. If you have Pellagra co-morbid then you just have to take a Vitamin to get rid of this morbidity. This is a summary of my 10 year journey. I researched these things for 3 to 4 year (2 Tim 2:7) before I had the courage in my conviction to test this Pellagra theory. But I think most people would rather hear from some who has suffered like them and has been able to help themselves. This is not theory anymore for me. It is my story. In case this is the only post you read I will repeat here for knowledge sakes ****** the number one mistake people make when taking Niacinamide is they don’t take it often or long enough. It should be taken UNTIL you are burping. Most people will burp when taking Niacinamide in 3 to 4 months or less taking it 3/daily — ie with each meal. What do I mean by burping? This confuses some people sometimes. I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated. But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat. Soon water will cause you to burp -- Burping without the bloat and distension (pain from gas) that comes later. When your stool begin sinking your body is digesting the carbs and proteins that were causing you the backwash (heartburn/GERD/IBS) before when you only burped a little or occasionally or when you drank something carbonated. Now BURPING will occur two hours after you ate something. Long after you have finished your meal you will burp if you have taken the Niacinamide 3/day for 3 to 4 months at a minimum. Dr. Prousky proved this 15 years ago this past November that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/a124b.htm Yet 15 years later people still are bemused when you mention Pellagra let alone that Pellagra could be contributing to your Co-Morbid Celiac disease. I for one will tell those will listen. I am a Celiac who developed Pellagra. Learn from my mistakes so you don’t have to repeat them and get your doctor to test you for a Niacin deficiency. Pellagra once rampant early in the 20th Century is now known TODAY as Celiac disease in the 21st Century (I believe) or at least in a good majority of cases could be. To paraphrase William Shakespeare “Disease by another name hurts just as much” and maybe more because if you get the right disease you can get better! You know have the power to help yourself forum reader (because knowledge is power) the question is what will you do about it? This blog post is a store house of 10 years of research learned from life experiences. The blog’s author has been stung so you don’t have to be. Learn from my mistakes. No man is so dumb as the man who won’t learn from other people’s mistakes. Take as much honey (knowledge) as you can from my mistakes so bad health will not sting your quality of life. Is it any wonder God’s promised land was described as a land flowing with milk and honey? Where knowledge flows there is health of mind and body. Feel free to ladle and dollop your life with the sweet stickiness of the truth (knowledge) found/ gained today. For honey like truth stick to you once in contact and you can’t just wash it away. Don’t let them the doctor’ almost kill you before you are willing to take a Vitamin to see if it is really the Co-Morbid Pellagra as the International Journal of Celiac Disease notes that could be causing your Celiac symptom’s in the MAJORITY of Celiac patients if the International Journal of Celiac disease is correct. Quoting again from the IJCD “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38].” See this link provided again for easy reference http://pubs.sciepub.com/ijcd/3/1/6/ Stop the madness! Admit the MAJORITY of Celiac Patients today are Co-Morbid with Pellagra and if you treat the co-morbid disease you can get better from that morbidity. The Celiac Posterboy might say “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY! By their admission (a professor of medicine/health professionals/doctors) Pellagra is OMITTED as a disease in most doctor’s differential diagnosis TODAY!” If you have (a) Celiac disease diagnosis then you have been stung with/by this ignorance. That as Creighton’s Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine discussion about why Pellagra is not diagnosed today here at this link http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ This blog post is about the ignorance (of) Pellagra cost’s you when the doctor’s diagnose you with Celiac Disease/NCGS when 58% of their patients is/are Co-Morbid with Pellagra and they get the wrong “key” diagnosis. **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found and my friends have found if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) and your stool SINK then 95% of your GI stress will be in remission. You could still have other things that are bothering you but it won’t be Pellagra. If you take fiber and still have GI trouble then eliminating supplemental dietary fiber for 30 days (like you did to see if gluten was your’ problem) might help you figure out whether the fiber is helping or hurting your GI problems. People do have bad reactions to fiber sometimes that can be confused for IBS problems and unless you try eliminating it for 30 days you won’t know for sure if it is causing or contributing to the remaining GI problems you might still be having after taking Niacin until burping if any. As I am fond of saying “To Educate is to truly Free”. But do not do as I did! Learn from my mistakes. DO NOT take Niacin or Niacinamide or any form of Niacin UNTIL you have your doctor’s test you for it (Pellagra). If you notice the IJCD link these were clinical observations only. Quoting the IJCD again “It is the first description of celiac disease . . . .and Pellagra in the same person, however, only associative linkscan be established, but not cause and effect relationships. Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated.” You probably know this by now if you are a Celiac or even a NCGS patient the diagnosis rate for Celiac disease can be a horrible and if you have Pellagra it is even worse because the doctor’s like Celiac disease 15 or 20 years ago are not even looking for it today. One more test needs to be done to differentiate Pellagra from Celiac and it is not being done today as Dr. Heaney correctly noted. Doctor’s don’t know to look for it (Pellagra) much less in a Celiac patient. See this link to the Merck Manual a commonly used traditional desk reference for Physician’s when they need to look up a diagnosis. http://www.merckmanuals.com/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/niacin Quoting from the Merck Manual “If available, laboratory testing can help confirm the diagnosis, particularly when the diagnosis is otherwise unclear. Urinary excretion of N1-methylnicotinamide (NMN) is decreased; < 0.8 mg/day (< 5.8 mcmol/day) suggests a niacin deficiency.” No, doctors don’t know everything they have to look things up from time to time too. And when they do look up Pellagra when you ask them to test you for it the way some people on this board went to their doctor’s to have them test for Celiac disease instead of accepting as Gemini on this board said and say you had IBS instead “I Be Stumped” they learned/were taught by their patient’s that Celiac is not as rare as once thought. And neither is Pellagra. Quoting the Celiac Posterboy “Pathology presumably would qualify the Pellagra patient as a Celiac Patient if the Pellgarin was first diagnosed as a Celiac first as often is the case TODAY!” Why is this? The pellagra disease blog explains why this is https://pellagradisease.wordpress.com/ Quoting Niki Frost “Since pellagra is (thought to be my words) such a rare disease today, few people recognize it based on their symptoms alone (any of the three D’s: dementia, dermatitis, and diarrhea). Pellagra patients are consequently (constantly being my words) referred to specialists in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease.” So the cycle repeats. Since these specialists don’t consider you in a subgroup that is prone to be diagnosed with Pellagra then Celiac/NCGS disease is diagnosed if you are lucky and not some other GI problem like chrons, IBS, UC etc because in these cases the GI specialists is not even looking for Gluten as a possible trigger. This is not to even mention the other D’s of Pellagra today being diagnosed as various degrees’ of Dermatitis like ezcema, psorsias, Dermatitis Herpetiformis (DH) etc which are related to skin presentations of Pellagra. Pellagra when it was first named means rough/sour skin in Italian and people forget that today. Or the dementia’s of Pellagra like depression (40 percent of Celiac’s are depressed) or the “brain fog” a Celiac develops after being “glutened” I could go on and on but you get the idea. But unless you are tested for it your doctor’ won’t know to look for it in their next Celiac patient because they do not know to look for it in GI patients today remember the war on Pellagra ended 75+years ago so they don’t look for (see) Pellagra anymore in a clinical setting unless you are in a subgroup like being an alcoholic etc . The same way they didn’t or might not of known to test their IBS patients for a Celiac diagnosis 10 or 15 years ago. I am not saying this will help you the way it seemed to help me. But I am saying have your doctor verify these things for you before doing these things because if you are a Celiac that has developed Pellagra also then it needs to be documented. If you want to read more about my story search for the posterboy on this board to read my other forum threads or visit the website in my profile. I have specifically left out dosage amounts because the frequency you take a B-Vitamin is more important than the amount you take of it. Because B-Vitamins are water soluble 2 or 3 hours later if one is deficient in that Vitamin then the body can absorb more of it. So taking higher doses don’t necessary help you any more than lower doses. They (higher doses 500mg) can be easier to find especially if you are taking it (Niacin) for cholesterol management but it doesn’t help you any quicker than smaller amounts more frequently and higher Niacin causing flushing (which can be mitigated to some degree by taking Niacin with food) where the Niacinamide form doesn’t. In fact taking smaller amounts frequently 3/day with meals will help approximately 40 percent faster than one larger 500mg capsule/tablet only once daily. And why if given a specific amount and you retain it (is low in the urine) is a sign you are low in Niacin. I do prefer the Niacinamide form because it is a naturally flush free form. The Merck Manual notes this quoting “Nicotinamide is usually used to treat niacin deficiency, because nicotinamide, unlike nicotinic acid (the most common form of niacin ), does not cause flushing, itching, burning, or tingling sensations. Nicotinamide is given in doses in doses of 250 to 500 mg po daily.” But a Slo-Niacin can work just as well. The Townsend Letter makes note of this in their Feb/Mar 2003 edition. http://www.townsendletter.com/FebMar_2003/inositol0203.htm This will be a cycle. You will take it until burping 2 hours after you finish your meal and your stool sinks where before it floated and even water now causes burping without bloating or gas or distension. It might be 3 or 4 months for some people or it might be even 6 months or longer for some people. But it is a cycle. Usually people feel better when they begin burping for the first time in years and their stool now sinks when before it always floated. I do not now take Niacinamide and haven’t for several years since my symptoms’ are in remission. I stopped taking it when I had rebound acid reflux. By that I mean I begin to have acid reflux symptoms when I had no food in my stomach that when away when I ate something. Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid was HIGH as you often hear then eating food (carbs, greasy things or your other triggers) wouldn’t bother you because it would only weaken it. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight you are in and things (carbs/fats) become to ferment, rancidify and cause heart burn. The excess pressure from fermented carbs push open the trap door allowing the low acid you have burn the lining of your esophagus. TRUE heartburn from too HIGH acid happens between meals when there is no food in your stomach to tamp it down and will occur if you take Niacinamide too long and how I knew I needed to stop taking Niacinamide. When low in stomach acid for too long in time this can lead to Non-Celiac disease first and with enough injury to Marsh lesions qualifying you for diagnosis as a Celiac candidate/patient. How do we know this? Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. Celiac.com reports these findings https://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the researcher’s starts the article “Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.” If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what they are postulating. They go on to say without being very technical (read the whole article for yourself) that “The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.” . . .. Summarizing their findings “The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship”. Now the term causal is not used lightly. To prove causal is much harder than casual (occurring with) like the 58% of Celiac who are also casually observed as having Pellagra. Gluten Free works summarizes a casual association of a Niacin deficiency very well at this link https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ They only note a casual association only noting similar symptoms occur in Pellagrin’s too. Quoting “ Inadequate levels of niacin slows metabolism and impairs functioning of the brain and nervous system, digestion, skin, DNA repair and other key cell processes, and steroid and sex hormone production. Severe deficiency of niacin causes the disease pellagra.2 “ I can not prove that Niacin helped me because I did not know to test for it or have the doctor test me for it but you can teach your doctor to look for i it in you if you are an IBS, NCGS, or Celiac patient by sharing the information in the Merck Manual with him/her. To prove causal you will have to have your doctor test you for a Niacin deficiency verifying the International Journal of Celiac disease casual observation that the majority of Celiac are co-morbid with Pellagra establishing if not a causal link that it at least contributes to your concomitant GI conditions in at least the 50 percent of Celiacs’ who are low in Niacin and don’t know it. Taking the Niacinamide as the Merck Manual notes in their key points for doctors can confirm the diagnosis. Quoting “Use nicotinamide/Niacinamide to treat the deficiency; a favorable response can confirm the diagnosis.” If you want to research more about Pellagra and how it can present as so many different diseases and its clinical presentation(s). I say presentation(s) because if it begins with a “D” i.e., dementia, dermatitis or Digestive Disorders(s) (I added the S to Digestive Disorder because I think it speaks to the spectrum of diseases) that Pellagra can and is often confused for in modern medicine. And could be added to dementia(s) and dermatitis (s) see above about depression and Celiac and Pellagra meaning rough/sour skin in Italian and the Hindai link below to do more research on Pellagra if this blog post is not enough to answer all of your questions. Read this great Hindawi article linked below for a great synopsis of Pellagra https://www.hindawi.com/journals/cggr/2012/302875/ where they pose the question what role does Pellagra play in contemporary disease (today) In one of their breakout paragraphs talking about Pellagra today! They discuss how Pellagra is still prevalent today in contemporary disease pathways entitled “Is Subclinical Pellagra Relevant to Contemporary Disease?” And they list a dozen plus ways it is and I whole-heartily agree and I hope you do too after reading this post. And doing some of the research listed therein. It bears repeating though I said it earlier **** Note: This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. Good luck on your journey and I hope it helps you the way it seemed to help me. Posterboy by God’s Grace! 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Blessed are those who will hear and take a Vitamin for their health or at least have their doctor check their Vitamin levels so they can get better from that morbidity if indeed as the International Journal of Celiac disease notes – Celiac’s are co-morbid with Pellagra in the Majority of celiac patients and the doctor’s don’t know yet to test for it but by having your doctor test your urine for low levels of Niacin it indicates you are retaining Niacin to maintain and repair your membranes the doctor can treat you for this morbidity a sign of undiagnosed Pellagra today.
  17. Celiac.com 08/30/2011 - In a first of its kind study, a team of researchers is attempting a global estimate of the burden of celiac disease in childhood, and to to determine what role childhood celiac disease might play in global mortality due to diarrhea. The research team included Peter Byass, Kathleen Kahn, and Anneli Ivarsson. They are affiliated with the Umeå Centre for Global Health Research, Department of Public Health and Clinical Medicine at Umeå University in Umeå, Sweden, and with the MRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences at University of the Witwatersrand in Johannesburg, South Africa. In the last several decades, celiac disease has become an an increasingly recognized public health problem. More recently, celiac disease has emerged as a global earth issue, in spite scant globally representative epidemiological data. Because children with celiac disease often have chronic diarrhea and malnutrition, a proper diagnosis is often missed, especially in poorer settings, where water-borne infectious diarrheas are common, and many children fail to thrive. To make their assessment, the two used available data to build a basic model of childhood celiac disease, incorporating estimates of population prevalence, probability of non-diagnosis, and likelihood of mortality among undiagnosed children of all countries from 1970 to 2010. In their paper, the two state the assumptions underlying their model, and make the model available as a supplementary file. Based on their model, in 2010 there were around 2.2 million children under 5 years of age living with celiac disease, while each year, there would be about 42,000 deaths related to celiac disease in these children. That would mean that, in 2008, deaths related to celiac disease likely totaled about 4% of all childhood diarrhea deaths worldwide. Even if celiac disease accounts for only a small proportion of global diarrhea deaths, these deaths are preventable, but not by normal diarrhea treatment, which can often involve gluten-based food supplements. They also note that, as other causes of diarrhea mortality decline, celiac disease will become a proportionately greater problem unless clinicians begin to try gluten-free diets for children with chronic diarrhea and malnutrition. Source: PLoS One. 2011; 6(7): e22774. doi: 10.1371/journal.pone.0022774
  18. Eur J Gastroenterol Hepatol 2000;12:541-547. (Celiac.com 07/09/2000) Researchers in Sweden released a report that shows a high number of patients with chronic diarrhea also have bile acid malabsorption. Further, steatorrhea is also common, but appears to be independent of bile acid malabsorption. Their study evaluated 94 patients with chronic diarrhea for loss of bile acids using both 75-SeHCAT and a fecal fat excretion tests. The patients also completed a symptom questionnaire before during a 7 day period before taking the 75-SeHCAT test. Dr. Kjell-Arne Ung and his colleagues from Sahlgrenska University Hospital, in Goteborg reported their finding in the the May issue of the European Journal of Gastroenterology and Hepatology. They found that mild steatorrhea was present in 50% of patients with non-organic bile acid malabsorption, and in 38% of patients with functional diarrhea. Further, low 75-SeHCAT levels alone is not an indicator or risk for steatorrhea, although some patients with severe organic disease had a concomitant malabsorption of fat and of bile acids. Dr. Ungs study also shows that severe steatorrhea was common in patients with celiac disease, even in patients with high 75-SeHCAT values. When compared with patients who had functional diarrhea, those with bile acid malabsorption had significantly more frequent and looser stools, however, abdominal pain, distension and flatulence was equal between those with bile acid malabsorption and normal bile acid absorption. In conclusion Dr. Ung and colleagues state: The high prevalence of bile acid malabsorption and the absence of specific symptoms, with the exception of frequent and liquid stools, indicates that the 75-SeHCAT test should be performed early in the investigation of patients with chronic diarrhea.
  19. AU- Khoshoo V; Bhan MK CS- Department of Pediatrics, All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India. JN- Indian Pediatr; 27 (6) p559-69 PY- Jun 1990 AB- The associated factors in 80 children (less than 2 yrs) with protracted diarrhea (greater than 21 days duration) and weight loss were: secondary carbohydrate intolerance (36): enteric pathogens (non typhoidal salmonella (11), enteropathogenic E. coli EPEC (6), giardia (4), and shigella (3); cows milk protein intolerance (3), gluten intolerance (3); miscellaneous (5); and undiagnosed enteropathy (9). Three of the EPEC showed localized pattern of adherence in vitro with HEP-2 cells. Most patients with salmonella and EPEC had severe secretory diarrhea with large fecal sodium losses. All 6 patients who died had secretory diarrhea and very high fecal sodium. All but 4 patients could be effectively managed with a chicken puree-glucose-coconut oil based diet.
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