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Celiac Disease & Gluten-Free Diet Blogs

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  • Research on South African Celiac Tours
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  • Keating's Not-so-Glutenfree life
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  • Searchin for a Primary Care Dr. In Redlands That is Knowledgeable about Celiac disease
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  • Celiac-Positive
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  • I love my plant Cactus <3
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  • Living in Japan with Ceoliac Disease
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  • MJ
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  • HONG KONG GLUTEN, WHEAT FREE PRODUCTS
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  • Healthy Food Healthy You
  • SydneyT1D - Diabetic and Celiac YouTuber!
  • GFGF's Blog
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  • SMAS: www.celiac.com
  • gardener1's Blog
  • Naezer's Blog
  • JordanBattenSymons' Blog
  • JillianC
  • Sugar's Blog
  • Blanche22's Blog
  • Jason's Blog
  • Gluten-Free Sisters :)
  • Eab12's Celiac Blog
  • ohiodad's Blog
  • Newly Self Diagnosed?
  • misscorpiothing's Blog
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  • Petroguy
  • abqrock's Blog
  • WhoKnew?'s Blog
  • Soap Opera Central
  • nurcan's Blog
  • Cindy's Blog
  • Daughter_of_TheLight's Blog
  • nopastanopizza's Blog
  • w8in4dave's Blog
  • Mr J's Blog
  • Rachel Keating's Blog
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  • krisb's Blog
  • deetee's Blog
  • CAC's Blog
  • EmilyLinn7's Blog
  • Teri Kiefer's Blog
  • happyasabeewithceliac's Blog
  • quietmorning01's Blog
  • jaimekochan's Blog
  • Cheryl
  • Seosamh's Blog
  • donna mae's Blog
  • Colleen's blog
  • DawnJ's Blog
  • Gluten Challenge
  • twins2's Blog
  • just trying to feel better's Blog
  • Celiac Teen
  • MNBelle blog
  • Gabe351's Blog
  • moosemalibu's Blog
  • Coeliac Disease or Coeliac Sprue or Non Tropical Sprue
  • karalto's Blog
  • deacon11's Blog
  • Nyxie's Blog
  • Swpocket's Blog
  • threeringfilly's Blog
  • Madison Papers: Living Gluten-Free in a Gluten-Full World
  • babinsky's Blog
  • prettycat's Blog
  • Celiac Diagnosis at Age 24 months in 1939
  • Sandy R's Blog
  • mary m's Blog
  • Jkrupp's Blog
  • Oreo1964's Blog
  • keyboard
  • Louisa's Blog
  • Guts & Brains
  • Gluten Free Betty
  • Jesse'sGirl's Blog
  • NewMom's Blog
  • Connie C.'s Blog
  • garden girl's Blog
  • april anne's Blog
  • 4xmom's Blog
  • benalexander60's Blog
  • missmyrtle's Blog
  • Jersey Shore wheat no more's Blog
  • swezzan's Blog
  • aheartsj's Blog
  • MeltheBrit's Blog
  • glutenfreecosmeticcounter
  • Reasons Why Tummy tuck is considered best to remove unwanted belly fat?
  • alfgarrie's Blog
  • SmidginMama's Blog
  • lws' Blog
  • KMBC2014's Blog
  • Musings and Lessons Learned
  • txwildflower65's Blog
  • Uncertain
  • jess4736's Blog
  • deedo's Blog
  • persistent~Tami's Blog
  • Posterboy's Blog
  • jferguson
  • tiffjake's Blog
  • KCG91's Blog
  • Yolo's Herbs & Other Healing Strategies
  • scrockwell's Blog
  • Sandra45's Blog
  • Theresa Marie's Blog
  • Skylark's Blog
  • JessicaB's Blog
  • Anna'sMommy's Blog
  • Skylark's Oops
  • Jehovah witnesses
  • Celiac in Seattle's Blog
  • March On
  • honeybeez's Blog
  • The Liberated Kitchen, redux
  • onceandagain's Blog
  • JoyfulM's Blog
  • keepingmybabysafe's Blog
  • To beer, with love...
  • nana b's Blog
  • kookooto's Blog
  • SunnyJ's Blog
  • Mia'smommy's Blog
  • Amanda's Blog
  • jldurrani's Blog
  • Why choosing Medical bracelets for women online is the true possible?
  • Carriefaith's Blog
  • acook's Blog
  • REAGS' Blog
  • gfreegirl0125's Blog
  • Gluten Free Recipes - Blog
  • avlocken's Blog
  • Thiamine Thiamine Thiamine
  • wilbragirl's Blog
  • Gluten and Maize-Free (gluten-free-MF)
  • Elimination Diet Challenge
  • DJ 14150
  • mnsny's Blog
  • Linda03's Blog
  • GFinDC's Blog
  • Kim UPST NY's Blog
  • cmc's Blog
  • blog comppergastta1986
  • JesikaBeth's Blog
  • Melissa
  • G-Free's Blog
  • miloandotis' Blog
  • Confessions of a Celiac
  • Know the significance of clean engine oil
  • bobhayes1's Blog
  • Robinbird's Blog
  • skurtz's Blog
  • Olivia's Blog
  • Jazzdncr222's Blog
  • Lemonade's Blog
  • k8k's Blog
  • celiaccoach&triathlete's Blog
  • Gluten Free Goodies
  • cherbourgbakes.blogspot.com
  • snow dogs' Blog
  • Rikki Tikki's Blog
  • lthurman1979's Blog
  • Sprue that :)'s Blog
  • twinkletoes' Blog
  • Ranking the best gluten free pizzas
  • Gluten Free Product
  • Wildcat Golfer's Blog
  • Becci's Blog
  • sillyker0nian's Blog
  • txplowgirl's Blog
  • Gluten Free Bread Blog
  • babygoose78's Blog
  • G-freegal12's Blog
  • kelcat's Blog
  • Heavy duty 0verhead crane
  • beckyk's Blog
  • pchick's Blog
  • NOT-IN-2gluten's Blog
  • PeachPie's Blog
  • Johny
  • Breezy32600's Blog
  • Edgymama's Gluten Free Journey
  • Geoff
  • audra's Blog
  • mfrklr's Blog
  • 2 chicks
  • I Need Help With Bread
  • the strong one has returned!
  • sabrina_B_Celiac's Blog
  • Gluten Free Pioneer's Blog
  • Theanine.
  • The Search of Hay
  • Vanessa
  • racecar16's Blog
  • JCH13's Blog
  • b&kmom's Blog
  • Gluten Free Foodies
  • NanaRobin's Blog
  • mdrumr8030's Blog
  • Sharon LaCouture's Blog
  • Zinc, Magnesium, and Selenium
  • sao155's Blog
  • Tabasco's Blog
  • Amanda Smith
  • mmc's Blog
  • xphile1121's Blog
  • golden exch
  • kerrih's Blog
  • jleb's Blog
  • RUGR8FUL's Blog
  • Brynja's Grain Free Kitchen
  • schneides123's Blog
  • Greenville, SC Gluten-Free Blog
  • ramiaha's Blog
  • Kathy P's Blogs
  • rock on!'s Blog
  • Carri Ninja's Blog
  • jerseygirl221's Blog
  • Pkhaselton's Blog
  • Hyperceliac Blog
  • abbiekir's Blog
  • Lasister's Thoughts
  • bashalove's Blog
  • Steph1's Blog
  • Etboces
  • Rantings of Tiffany
  • GlutenWrangler's Blog
  • kalie's Blog
  • Mommy Of A Gluten Free Child
  • ready2go's Blog
  • Maureen
  • Floridian's Blog
  • Bobbie41972's Blog
  • Everyday Victories
  • Intolerance issue? Helpppp!
  • Feisty
  • In the Beginning...
  • Cheri46's Blog
  • Acne after going gluten free
  • sissSTL's Blog
  • Elizabeth19's Blog
  • LindseyR's Blog
  • sue wiesbrook's Blog
  • I'm Hungry's Blog
  • badcasper's Blog
  • M L Graham's Blog
  • Wolicki's Blog
  • katiesalmons' Blog
  • CBC and celiac
  • Kaycee's Blog
  • wheatisbad's Blog
  • beamishmom's Blog
  • Celiac Ninja's Blog
  • scarlett54's Blog
  • GloriaZ's Blog
  • Holly F's Blog
  • Jackie's Blog
  • lbradley's Blog
  • TheSandWitch's Blog
  • Ginger Sturm's Blog
  • The Struggle is Real
  • whataboutmary's Blog
  • JABBER's Blog
  • morningstar38's Blog
  • Musings of a Celiac
  • Celiacchef's Blog
  • healthygirl's Blog
  • allybaby's Blog
  • MGrinter's Blog
  • LookingforAnswers15's Blog
  • Lis
  • Alilbratty's Blog
  • 3sisters' Blog
  • MGrinter's Blog
  • Amanda
  • felise's Blog
  • rochesterlynn's Blog
  • mle_ii's Blog
  • GlamourGetaways' Blog
  • greendog's Blog
  • Tabz's Blog
  • Smiller's Blog
  • my vent
  • newby to celiac?'s Blog
  • siren's Blog
  • myraljo's Blog
  • Relieved and confused
  • carb bingeing
  • scottish's Blog
  • maggiemay832's Blog
  • Cristina Barbara
  • ~~~AnnaBelle~~~'s Blog
  • nikky's Blog
  • Suzy-Q's Blog
  • mfarrell's Blog
  • Kat-Kat's Blog
  • Kelcie's Blog
  • cyoshimit's Blog
  • pasqualeb's Blog
  • My girlfriend has celiacs and she refuses to see a doctor
  • Ki-Ki29's Blog
  • mailmanrol's Blog
  • Sal Gal
  • WildBillCODY's Blog
  • Ann Messenger
  • aprilz's Blog
  • the gluten-free guy
  • gluten-free-wifey's Blog
  • Lynda MEADOWS's Blog
  • mellajane's Blog
  • Jaded's Celiac adventures in a non-celiac world.
  • booboobelly18's Blog
  • Dope show
  • Classic Celiac Blog
  • Keishalei's Blog
  • Bada
  • Sherry's blurbs
  • addict697's Blog
  • MIchael530btr's Blog
  • Shawn C
  • antono's Blog
  • Undiagnosed
  • little_d's Blog
  • Gluten, dairy, pineapple
  • The Fat (Celiac) Lady Sings
  • Periomike
  • Sue Mc's Blog
  • BloatusMaximus' Blog
  • It's just one cookie!
  • Kimmy
  • jacobsmom44's Blog
  • mjhere's Blog
  • tlipasek's Blog
  • You're Prescribing Me WHAT!?!
  • Kimmy
  • nybbles's Blog
  • Karla T.'s Blog
  • Young and dealing with celiacs
  • Celiac.com Podcast Edition
  • LCcrisp's Blog
  • ghfphd's allergy blog
  • https://www.bendglutenfree.com/
  • Costume's and GF Life
  • mjhere69's Blog
  • dedeadge's Blog
  • CeliacChoplin
  • Ravenworks' Blog
  • ahubbard83's Blog
  • celiac<3'sme!'s Blog
  • William Parsons
  • Gluten Free Breeze (formerly Brendygirl) Blog
  • Ivanna44's Blog
  • Daily Life and Compromising
  • Vonnie Mostat
  • Aly'smom's Blog
  • ar8's Blog
  • farid's Blog
  • Sandra Lee's Blog
  • Demertitis hepaformis no Celac
  • Vonnie Mostat, R.N.
  • beetle's Blog
  • Sandra Lee's Blog
  • carlyng4's Blog
  • totalallergyman's Blog
  • Kim
  • Vhips
  • twinsmom's Blog
  • Newbyliz's Blog
  • collgwg's Blog
  • Living in the Gluten Free World
  • lisajs38's Blog
  • Mary07's Blog
  • Treg immune celsl, short chain fatty acids, gut bacteria etc.
  • questions
  • A Blog by Yvonne (Vonnie) Mostat, RN
  • ROBIN
  • covsooze's Blog
  • HeartMagic's Blog
  • electromobileplace's Blog
  • Adventures of a Gluten Free Mom
  • Fiona S
  • bluff wallace's Blog
  • sweetbroadway's Blog
  • happybingf's Blog
  • Carla
  • jaru24's Blog
  • AngelaMH's Blog
  • collgwg's Blog
  • blueangel68's Blog
  • SimplyGF Blog
  • Jim L Christie
  • Debbie65's Blog
  • Alcohol, jaundice, and celiac
  • kmh6leh's Blog
  • Gluten Free Mastery
  • james
  • danandbetty1's Blog
  • Feline's Blog
  • Linda Atkinson
  • Auntie Lur: The Blog of a Young Girl
  • KathyNapoleone's Blog
  • Gluten Free and Specialty Diet Recipes
  • Why are people ignoring Celiac Disease, and not understanding how serious it actually is?
  • miasuziegirl's Blog
  • KikiUSA's Blog
  • Amyy's Blog
  • Pete Dixon
  • abigail's Blog
  • CHA's Blog
  • Eczema or Celiac Mom?'s Blog
  • Thoughts
  • International Conference on Gastroenterology
  • Deedle's Blog
  • krackers' Blog
  • cliniclfortin's Blog
  • Mike Menkes' Blog
  • Juanita's Blog
  • BARB OTTUM
  • holman's Blog
  • It's EVERYWHERE!
  • life's Blog
  • writer ann's Blog
  • Ally7's Blog
  • Gluten Busters: Gluten-Free Product Alerts by Celiac.com
  • K Espinoza
  • klc's Blog
  • Pizza&beer's Blog
  • CDiseaseMom's Blog
  • sidinator's Blog
  • Dr Rodney Ford's Blog
  • How and where is it safe to buy cryptocurrency?
  • lucedith's Blog
  • Random Thoughts
  • Kate
  • twin#1's Blog
  • myadrienne's Blog
  • Nampa-Boise Idaho
  • Ursa Major's Blog
  • bakingbarb's Blog
  • Does Celiac Cause Sensitivites To Rx's?
  • delana6303's Blog
  • psychologygrl25's Blog
  • Alcohol and Celiac Disease
  • How do we get it???
  • cooliactic_BOOM's Blog
  • GREAT GF eating in Toronto
  • Gluten-free Food Recommendations!
  • YAY! READ THIS!!
  • BROW-FREE DIET BLOG
  • carib168's Blog
  • A Healing Kitchen
  • Shawn s
  • AZ Gal's Blog
  • mom1's Blog
  • The Beginning - The Diagnosis
  • PeweeValleyKY's Blog
  • solange's Blog
  • Cate K's Blog
  • Layered Vegetable Baked Pasta (gluten-free Vegetarian Lasagna)
  • Gluten Free Teen by Ava
  • mtdawber's Blog
  • sweeet_pea's Blog
  • DCE's Blog
  • Infertility and Celiac Disease
  • What to do in the Mekong Delta in 1 Day?
  • glutenfreenew's Blog
  • Living in the Garden of Eden
  • toddzgrrl02's Blog
  • redface's Blog
  • Gluten Free High Protein
  • Ari
  • Great Harvest Chattanooga's Blog
  • CeliBelli's Blog
  • Aboluk's Blog
  • redface's Blog
  • Being in Control of Your Gluten-Free Diet on a Cruise Ship
  • jayshunee's Blog
  • lilactorgirl's Blog
  • Yummy or Yucky Gluten-Free Foods
  • Electra's Blog
  • Cocerned husband's Blog
  • lilactorgirl's Blog
  • A Little History - My Celiac Disease Diagnosis
  • How to line my stomach
  • sewfunky's Blog
  • Oscar's Blog
  • Chey's Blog
  • The Fun of Gluten-free Breastfeeding
  • Dawnie's Blog
  • Sneaky gluten free goodness!
  • Chicago cubs shirts- A perfect way of showing love towards the baseball team!
  • Granny Garbonzo's Blog
  • GFzinks09's Blog
  • How do I get the Celiac.com podcast on my mp3 player?
  • quantumsugar's Blog
  • Littlebit's Blog
  • Kimberly's Blog
  • Dayz's Blog
  • Swimming Breadcrumbs and Other Issues
  • Helen Burdass
  • celiacsupportnancy's Blog
  • Life of an Aggie Celiac
  • kyleandjra.jacobson's Blog
  • Hey! I'm Not "Allergic" to Wheat!
  • FoOdFaNaTic's Blog
  • Wendy Cohan, RN's Gluten-Free and Dairy-Free Cooking Classes
  • Lora Derry
  • Dr. Joel Goldman's Blog
  • The Ultimate Irony
  • Lora Derry
  • ACK514's Blog
  • katinagj's Blog
  • What Goes On, Goes In (Gluten in Skin Care Products)
  • What’s new in hydraulic fittings?
  • cannona3's Blog
  • citykatmm's Blog
  • Adventures in Gluten-Free Toddling
  • tahenderson67's Blog
  • The Dinner Party Drama—Two Guidelines to Assure a Pleasant Gluten-Free Experience
  • What’s new in hydraulic fittings?
  • sparkybear's Blog
  • justbikeit77's Blog
  • To "App" or Not to "App": The Use of Gluten Free Product List Computer Applications
  • Onangwatgo
  • Raine's Blog
  • lalla's Blog
  • To die for Cookie Crumb Gluten-Free Pie Crust
  • DeeTee33's Blog
  • http://glutenfreegroove.com/blog/
  • David2055's Blog
  • Gluten-Free at the Fancy Food Show in San Francisco
  • Kup wysokiej jakości paszporty, prawa jazdy, dowody osobiste
  • Janie's Blog
  • Managing Hives & Gluten Allergies
  • Bogaert's Blog
  • Janie's Blog
  • RaeD's Blog
  • Dizzying Disclaimers!
  • Dream Catcher's Blog
  • PinkZebra's Blog
  • Hibachi Food and Hidden Gluten Hazards (How to Celebrate Gluten-Free)
  • jktenner's Blog
  • OhSoTired's Blog
  • PinkZebra's Blog
  • gluten-free Lover's Blog
  • Gluen Free Health Australia
  • Melissamb21's Blog
  • Andy C's Blog
  • halabackgirl9129's Blog
  • Liam Edwards' Blog
  • Celiac Disease in Africa?
  • Suz's Blog
  • Gluten-Free Fast Food
  • mis_chiff's Blog
  • gatakat's Blog
  • macocha's Blog
  • Newly Diagnosed Celiacs Needed for Study in Chicago
  • Poor Baby's Blog
  • the loonie celiac's Blog
  • jenlex's Blog
  • Sex Drive/Testosterone can be Depleted by Certain Foods
  • samantha79's Blog
  • 21 Months into the Gluten-free Diet
  • WashingtonLady's Blog-a-log
  • James S. Reid's Blog
  • Living with a Gluten-Free Husband
  • runner girl's Blog
  • kp3972's Blog
  • ellie_lynn's Blog
  • trayne91's Blog
  • Gluten-free Lipstick!
  • Nonna2's Blog
  • Schar Chocolate Hazelnut Bar (Gluten-Free)
  • pnltbox27's Blog
  • Live2BWell's Blog
  • melissajohnson's Blog
  • nvsmom's Blog
  • Diagnosed with Celiac Disease and Still Sick
  • snowcoveredheart's Blog
  • Gluten Free Nurse
  • Gluten-Free Frustration!
  • Melody A's Blog
  • novelgutfeeling's Blog
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Found 11 results

  1. 09/18/2023 - Vomiting and nausea are considered common symptoms related to gluten ingestion in treated celiac disease. However, the overall rates and associated factors of these symptoms after chronic gluten exposure, and acute re-exposure during gluten challenge, remain poorly understood. A team of researchers recently set out to explore the rates and factors associated with vomiting and nausea in individuals with celiac disease, both at the time of diagnosis and during gluten challenges. The research team included Iida Ahonen, Pilvi Laurikka, Sara Koskimaa, Heini Huhtala, Katri Lindfors, Katri Kaukinen, Kalle Kurppa, and Laura Kivelä. They are variously affiliated with the Celiac Disease Research Center, Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland; the Department of Internal Medicine, Tampere University Hospital, Tampere, Finland; the Tampere Center for Child, Adolescent and Maternal Health Research, Tampere University and Tampere University Hospital, Tampere, Finland; the Faculty of Social Sciences, Tampere University, Tampere, Finland; and the University Consortium of Seinäjoki, Seinäjoki, Finland. For their study, the researchers collected medical data from 815 adult celiac disease patients at the time of their diagnosis, and an additional 74 patients underwent a three-day gluten challenge. Here are the team's key findings: At The Time of Celiac Disease Diagnosis About one in three patients presented with vomiting at the time of their celiac disease diagnosis. These patients were less likely to have been identified through screening, and more likely to experience various other symptoms. Specifically, patients who suffered from vomiting had about a 20% higher occurrence of abdominal pain, diarrhea, and weight loss, along with a nearly 30% higher rates of childhood symptoms, compared to those without vomiting. During a Gluten Challenge During the short-term gluten challenge, nearly 20% of patients experienced vomiting/nausea. Interestingly, those who consumed gluten-free oats less frequently were about 30% more likely to experience these symptoms. There were no significant differences between the two groups in terms of other clinical-demographic characteristics, duration of a gluten-free diet, or other symptoms. Literature Review The study also conducted a literature review, which revealed a wide range in the prevalence of vomiting/nausea in celiac disease patients, both at diagnosis (ranging from 3% to 46%), and during gluten challenges (ranging from 13% to 61%). Overall, vomiting and nausea appear to be relatively specific symptoms associated with gluten ingestion in individuals with treated celiac disease. At diagnosis, those experiencing vomiting tended to have a higher rates of other gastrointestinal symptoms and an earlier onset of symptoms in childhood. During a gluten challenge, reduced consumption of gluten-free oats was linked to a higher likelihood of vomiting/nausea. The prevalence of these symptoms varied widely in the existing literature. This research provides valuable insights into the presentation of symptoms in celiac disease patients, shedding light on factors associated with vomiting and nausea both at diagnosis and during gluten challenges. Read more at bmcgastroenterology.com
  2. A couple years after being diagnosed with celiac disease, when I was in my early 20's, I lost the ability to digest peanuts & nuts (coconuts excluded). I never had a peanut or nut allergy growing up. One day in my early 20's after eating a bunch of peanuts I developed the worst burning stomach pain I've ever had. It lasted for several hours. Then I started burping up the taste/smell of sulphur. Followed by severe diarrhea and vomiting. I didn't associate it with the peanuts the first time it happened but over the course of the next few years, after reoccurrences of the same symptoms, always after eating peanuts or nuts, I made the connection. I have had it happen twice without eating peanuts or nuts, and during both of those occurrences I overate and fell asleep too soon after eating. Usually the vomiting starts after hours of stomach pain and sulphur burps and contains undigested food. Once, it was pasta I had eaten several days earlier that I threw up whole. For the most part I feel that I have the issue under control by not eating peanuts or nuts, and by not allowing my body to be horizontal for at least 1-2 hours after eating a meal. However, I live in constant fear of it happening again because it's so unpleasant that it's traumatizing. Strange fact: both my older and younger sister (who are also gluten free), developed the same intolerance around the same time. We all went gluten free around the same age too. None of us had ever had an intolerance to peanuts or nuts before going gluten free. There remains some confusion about it because it does not happen consistently. My little sister accidentally ate almonds recently and had no reaction. She can also eat peanut butter and nut milks. I am too afraid to try peanuts or any nuts these days, although I can recall not always reacting badly to them as well. My older sister's stomach has gotten so bad that she can't really digest anything other than meat and dairy anymore. Any fiber what so over and she is vomiting. Our guts seem like they are healing since going gluten free, yet all three of us feel our stomachs have been on the decline. I know lower stomach acid is a natural part of aging but we are 29, 31, and 34 years old. Has anyone else experienced this change in symptoms? Stomach issues are not my only problem but I'm trying to narrow it down for the sake of this topic being mostly about food intolerances that developed years after being diagnosed with celiacs and going gluten free. I'm 31 and I've been gluten free for 11 years. Please share your experience if you can relate, or any knowledge you might have.

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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. I need help understanding this because my doctors are no help. Why would my Gastro Dr. not tell me about Gluten free diet? My son is actually the one who told me that I may have a sensitivity after seeing me in pain everyday and feeling like I cannot eat....and he's not a Dr.! I am hoping to have people reach out because I am at my wits end!
  6. My 17-yr old was diagnosed a couple of weeks ago after finally getting an upper endoscopy. She's been in the hospital for over a month after intractable vomiting and weight loss. First she was in a regular pediatric ward, then they moved her to an eating disorders unit after misdiagnosing her with an eating disorder. Fortunately, they had ordered a Celiac antibody test, and when the blood work finally came back positive, they ordered an endoscopy. But she is still stuck in the eating disorders unit. She is still on an NG tube & they are still trying to re-feed her as though she has an eating disorder - a 'normal' diet [edit: a normal gluten-free ovo-lacto vegetarian diet]. Yes, 'we want all the macronutrients represented' (dietician's statement) - in her vomit. When throws up, she throws up the tube and it has to be replaced and they check the position with an X-ray - sometimes several to get the position correct. I don't see what would be so bad about doing a limited diet in view that her gut is terribly damaged and needs time to recover [edit: due to possible malabsorption or additional sensitivities]. Maybe just rice for a day or two (she's still getting Osmolite for most of her calories, so no worries on nutrition), then add new items in slowly. Does that not make sense? Any advice on diet or anti-nausea drugs* would be appreciated. I seriously think she would be better off at home. We could substitute the NG tube feedings with a shot glass full of Ensure Plus every 30 min for 12-14 hrs, if necessary. No more X-rays. I gather it may take months for her gut to heal. *she's already taking Zofran

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  8. Hi, I'm new to all this. My 13 yo was just diagnosed w/celiac after endoscopy. How long will it be before he stops throwing up every time he eats? He is eating everything gluten-free but he still has stomach pain. He eats chicken then has dry-heaves. I'm just concerned and would like some idea. I've called the doctor and he says he should be feeling better. Any thoughts?
  9. I have been a diagnosed Celiac for 6 years now. The moment I was diagnosed I have lead a strict gluten free life, I wasn't taking any chances and wanted to feel better. Over the past 6 years I have never intentionally eaten gluten, but there have been times that I have had cross contamination, especially eating out. Yesterday was quite an experience and I've learned from it and upon trying to research it I found nothing....I'm hoping I'm not the only one, although I wouldn't wish this on anyone. About a year ago I found a Chinese restaurant that had an owner who's claim to fame was she had found ways to make just about everything on the menu gluten free. Gluten free Chinese food? Yes please!! I ate there 4 times with no reaction....ahh, life is complete!....until yesterday. I ordered the gluten free potstickers and sweet and sour prawns. About 2 hours later I started feeling really nauseous. The first thing I thought was maybe I got cross contaminated. Then within the hour I told my friend that I needed to go to the emergency room. I had SEVERE middle back pain and upper stomach pain. I was dizzy, extremely nauseous and my lips were burning and tingling. By the time we pulled up to the emergency room I couldn't stop throwing up....it was bad. And the pain was so intense I was told I was whimpering. They got me in right away and started me on an iv and gave me toradol for the pain and zofran for the vomiting. The doctor wanted to do blood work and an ultrasound because he was concerned it was my gallbladder. Well, everything was fine and it was the gluten, although they couldn't test or confirm it. It is day 2 and my lips are still tingly and I still have quite a bit of pain and nausea. I'm extremely tired and weak. I was looking online for people that have had the same or similar reaction and found nothing....am I the only one? Some things I know have helped me and hopefully they can help others....if you've been cross contaminated or "glutenized" as I call it....chew a handful of vitamin c chewables, it helps. Drink LOTS of water. Stick to a bland diet and NO caffeine for a few days to let your stomach heal. Heating pads help and get lots of rest. And there is an amazing product called GI Response, you can buy it on Amazon. It's expensive but you will thank me later. I don't know how long it will take to feel back to "normal", but I have sworn off eating out....I'd swear off eating if I could. Being gluten free sucks. But that's what we've been dealt and so we must deal with it the best we can. I hope that I've helped at least one person.....and if you are unfortunate enough to have the same reaction to gluten as me....know that you aren't alone.
  10. Hello all, So, long story short, in 2011 I started getting really really sick, with no discernible cause. Violent vomiting daily, rapid weight gain (40 pounds in one month) unbelievable exhaustion, depression, social anxiety to the point of not being able to leave the house, hives, acne, rashes, brain fog, and my LEAST favorite, the all-over bruised body feeling you get when you have the flu (that horrible bone deep aching that makes it uncomfortable to move at all, and any clothing touching you hurts.) Oh, and monstrous swelling of my face and stomach. I wound up figuring out through elimination of certain things in my diet that what was doing it was gluten and dairy. So, over the years I've cut them out (at first, after I cut them out, I was still getting horrendously sick, just less often and it took me too long to realize CROSS CONTAMINATION WAS A THING) So fast forward to now, I'm able to function like a human again by being INCREDIBLY strict with my diet and making almost all of my food myself and NEVER taking any chances with anything that was "processed in the same facility with..." etc etc I've also recently started going back to school, which means I have to be EXTRA careful, or I won't be able to attend classes or study because my brain, and my body just don't function when I've been exposed. However, I've always been a do it yourself girl, so after having endoscopies and colonoscopies years ago, and having a doctor tell me I had "acid reflux" (way to diagnose the symptom, not the cause, ya jerk) and having no doctors know why I was getting so sick, and eventually figuring it out myself, I never was tested for Celiac's Disease. So obviously, I'm scarred for life, and terrified to death of gluten and I was wondering; does anyone know of some way that I could be tested for it WITHOUT exposing myself to it? Thank you so much in advance
  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. I made this account to ask this question and i dont know if this is the right place but please help Someone I know was diagnosed about 1 year ago and she’s getting worse I think. Everything she eats she vomits whether it’s glutened or not. I’m really worried!! Always feeling pukey which she says is normal but this pukey!!? she cant even take pills please please PLEASE someone help!! edit: she’s taking b12, d3, and a few others that aren’t for main things just like side affects. - sa
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