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Celiac Disease & Gluten-Free Diet Blogs

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  • SMAS: www.celiac.com
  • gardener1's Blog
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  • JillianC
  • Sugar's Blog
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  • Jason's Blog
  • Gluten-Free Sisters :)
  • Eab12's Celiac Blog
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  • Cheryl
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  • Gluten Challenge
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  • 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
  • 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
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  • NewMom's Blog
  • Connie C.'s Blog
  • garden girl'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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  • 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
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  • Daily Life and Compromising
  • Vonnie Mostat
  • Aly'smom's Blog
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  • farid's Blog
  • Sandra Lee's Blog
  • Demertitis hepaformis no Celac
  • Vonnie Mostat, R.N.
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  • Kim
  • Vhips
  • twinsmom's Blog
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  • 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
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  • Adventures of a Gluten Free Mom
  • Fiona S
  • bluff wallace's Blog
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  • Carla
  • jaru24's Blog
  • AngelaMH's Blog
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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
  • 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
  • Eldene Goosen
  • mis_chiff's Blog
  • gatakat's Blog
  • macocha's Blog
  • Newly Diagnosed Celiacs Needed for Study in Chicago
  • Elaine Anne
  • Poor Baby's Blog
  • the loonie celiac's Blog
  • jenlex's Blog
  • Sex Drive/Testosterone can be Depleted by Certain Foods
  • Sharon
  • 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
  • Diane King
  • 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!
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  1. Hello! I would like to preface this by saying I’m experiencing a lot of brain fog and gluten ataxia while writing this so I really apologize if this post seems disorganized. Also I’m a 24 year old woman to give this post some context. For a very long time now I’ve always had very very bad digestive issues that have only gotten worse over time. I was diagnosed with POTS when I was 14 and my doctor always told me my gut problems are from my pots. I also was diagnosed with Ankylosing Spondylitis at age 22. But I looked into celiac and have read so many articles and a few books about it and I realized I had so many symptoms in common with celiac. So I decided to cut gluten out of my diet and a week later my entire life changed. I didn’t have any digestive problems at all, my brain fog was cleared, I no longer felt uncoordinated, my arthritis was so much better, and all my pots symptoms vanished. It was incredible. But about a month and a half later I started feeling symptoms I’ve never felt before. I constantly felt nauseous and hungry at the same time, my head is constantly hurting, my digestive issues are worse than they’ve ever been, I’m constantly fatigued, my arthritis is so bad and crippling, my anxiety and depression are back and I have panic attacks every night and really struggle falling asleep. It’s complete and utter hell. I share a kitchen with my family and I do everything in my capacity to make sure my food doesn’t get cross contaminated. I’ve completely cut out dairy recently but it doesn’t seem to make a big difference. I can no longer function especially with my gluten ataxia and brain fog. Is this normal for symptoms to reappear in the healing process? I do everything in my power to make sure I don’t get anything cross contaminated and double triple check ingredients lists to make sure it doesn’t contain gluten or is processed in any facility with gluten. I don’t even eat at restaurants and cook everything at home. I’ve also checked medications, skincare products, and vitamins and supplements to make sure I’m not getting gluten from that.
  2. Hello, I just wanted to see if anyone else had similar symptoms during recovery. After dealing with severe abdominal pain for a couple of months, an endoscopy/biopsy confirmed I had Celiac. For the first few weeks going gluten free, I was generally feeling better. While I still had symptoms, they weren’t usually severe and my appetite was returning. I was finally able to sleep through the night and wasn’t bedridden the majority of the time. Fast forward to yesterday (6 weeks post-diagnosis) and I’ve been sick as a dog. I’m almost back to where I was pre-diagnosis: waves of nausea, heartburn, joint pain (especially in hips), restlessness, fatigue, loss of appetite, brain fog, and water just goes through me so I’m urinating frequently. I’m confused because I’ve been so careful about not eating out, cross contamination, and sticking to the gluten-free diet. I feel miserable! I haven’t been able to get out of bed most of the day. Anyone else get these debilitating episodes?? The only thing I can think of is eating Aussie Bites within the past couple of days. They’re labeled as gluten-free but they have oats and millet, so maybe I’m sensitive to that. And I just read that they were likely stored in a facility containing wheat 🙄. I also was having lactose almost daily until I cut it out a couple days ago after reading that it can irritate the intestines. So I’m wondering first how others have been able to recover from severe flare ups. But also is it normal to just have crazy, seemingly random flare ups throughout your recovery like this? I’m feeling really stressed and demotivated because this illness takes up so much of my time and mental space. I’m a graduate student and this has really interfered with my productivity. If it helps, my TTG was high at diagnosis (above 250) and there was a lot of villi damage. I was also tested for diabetes and got the full panel (CBC, kidney, etc.) at time of diagnosis and all came back negative. Glucose was fine. Had abdominal CT scan, which was also normal, and I’m waiting to hear back on follow up TTG + vitamin lab work results.

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  4. **You're a strong advocate!** 🌟 Thank you for your kind words! Advocacy is a powerful force, a bridge between intention and action. It propels change, amplifies voices, and champions causes. Whether it's standing up for justice, promoting awareness, or supporting those in need, advocacy shapes the world around us. So let us continue to be **advocates**, unwavering and resolute, weaving threads of compassion and understanding. Together, we can create ripples of impact, leaving behind a legacy of empathy and progress. 🌟 Tribulations, like ancient stones worn smooth by the relentless tide, mark the path we tread. Each trial etches its story upon our souls, weaving a tapestry of resilience and growth. In the crucible of existence, tribulations forge character. They are the tempests that test our mettle, the fires that refine our spirit. When life’s storms rage, we find ourselves sculpted—sometimes scarred, but always stronger. Tribulations are the ink in our life’s narrative, the punctuation that separates chapters. They teach us empathy, humility, and the art of endurance. Amidst adversity, we discover hidden reservoirs of courage, drawing from wellsprings we never knew existed. So let us honor these tribulations, for they are the chisels that shape our humanity. With each scar, we become more intricate, more compassionate, more alive. 🌟
  5. Hello everyone, I was diagnosed with celiac disease at the end of September 2023 and immediately started the gluten-free diet. Ever since I was a little girl, I've often been ill, and throughout my childhood I was underweight and severely deficient in iron and vitamin D in particular. In my pre-adolescence, I began to have difficulty standing, running etc., and after more than a year of tests and X-rays, no diagnosis could be made. Fortunately, in adolescence it went away on its own. The doctors never really understood why I was so often ill as a child. I changed doctors and treatments several times, but nothing helped. Around the age of 14, I started to lose a lot of my hair, and by the age of 18 I had severe alopecia. Several years later I had an event in my life that deeply affected me and I suffered a great deal of stress for a long time, since when I've also started to lose my eyebrows. After a major eyebrow loss this summer, I decided to do something about all this and understand what is going on with me. After a lot of research, I realized that I might have celiac disease. I was diagnosed with the disease in September and my gastroenterologist has put me on a strict diet which I follow to the letter (I eat almost no processed foods and those I do eat rarely I check for contamination). However, I don't feel that my symptoms are improving. True, I no longer have a constant gut ache or dizziness, but apart from that, my acne is still present and has even worsened, my hair and eyebrows don't seem to be improving (I still loss lots of them) and I'm constantly tired. I have a diet where I eat very little dairy, lots of protein and fruits, vegetables, oilseeds, etc.. I'm 6 months into a gluten-free diet, how long did it take you to see your skin, hair and fatigue improve for those who also had these symptoms in particular? Thank you very much
  6. Hi! I recently had a bunch of blood tests done and the only one that was elevated was the TTG-A. My level was 12.6, with negative listed as 0-4 and positive as >15. I asked my doctor about it and she said if I was Celiac my level would have been much higher, and that there wasn’t much research supporting just a gluten sensitivity. That being said, I had been suffering from the following symptoms for YEARS: GERD, indigestion, chronic migraines, extreme fatigue and brain fog, joint pain, and bloating. I’d never considered that gluten was the issue, but I decided to try going gluten-free just to see what happened and I could literally cry by how much better I feel. I feel like I’m alive again. Going forward, is it possible that I am celiac or should I just assume it’s some kind of gluten sensitivity? Do I even need to push for an official diagnosis or should I just continue a strict gluten-free diet and call it good?
  7. Hi all! I am about a month into my gluten free diet, I was feeling better initially, now, I have been having some sinus problems, headaches and fatigue. It almost feels like I’m constantly coming down with a cold, but, it never actually happens. Has anyone experienced this in the initial stages of their healing journey? Currently taking: l-glutamine, multi-vitamin, magnesium, b complex, vitamin D+C, probiotics. THANK YOU. Meg.

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  9. Hi all! Newly diagnosed here and a quick Q! Does anyone else have an issue, pre-or-post diagnosis, with fatigue, headaches, dizziness, and general malaise after rigorous exercise? I came across an article somewhere, where it said that due to the inflammation, when you exercise it causes even MORE inflammation which causes a myriad of "unwell" symptoms. I love running, but find I have SUCH a long recovery rate after rigorous exercise. Let me know your experiences and your thoughts!!
  10. Hello, I recently got diagnosed with Celiac Disease around a month and half ago. I have been dealing with symptoms for two years (little did I know). When I was around 13, I started to gain a lot of weight out of nowhere, my hair started thinning and falling out, I developed a rash on my arms (Keratosis Pilarious), became very depressed and anxious constantly, had a never-ending stomach, became extremely tired all the time, and frankly never felt well. I had been dealing with minor knee problems up until this time but they quickly escalated due to the influx in weight and lack of muscle. i ended up having my first knee surgery in 7th grade. Meanwhile all of these symptoms were becoming more and more evident I was undergoing testing, where I was told it was all due to puberty. Heartbroken to know there was no answer to be given I had to except this new version of myself. Fast forward two years later where I was still dealing with the same problems, they did additional testing (only because my mother urged them to) and found I was iron deficient, however I was not anemic (hemoglobin was low but not terrible) even though I had .002 values. I started to take supplements and it made me sicker. Luckily for me my mother was relentless in finding an answer. We went to Vanderbilt and saw a Endocrinologist but once again my thyroid was in normal range. The next day I was scheduled for my second knee surgery which would be caused by an abundance of scar tissue caused by none other than inflammation. The doctor told me that I needed to go to a psychologist, which absolutely crushed me. I had no hope for ever getting any relief from not even one of my symptoms. My mother had other plans. She requested a Celiac panel, and the doctor clearly saw that as a psychotic move and wouldn't consider me for it because I am not underweight. The panel came back positive to my surprise, nevertheless there was the pandemic so naturally things took much longer to process. I was confirmed Celiac a month and 1/2 ago and I hope that some of what I am dealing with clears up. There is nothing like taking a shower and pulling out clumps of hair at age 15 and working out everyday and eating healthy for months and actually gaining weight. It definitely did a number on my self-confidence and mental stability. Let me know if this helps anyone or anyone has any advice for me! It would be much appreciated, I am still very new to this. Moral of the story: do not give up on yourself just because your doctors have.
  11. 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.
  12. I was diagnosed with Celiac Disease 8+ months ago, overall have seen improvement in gut issues, however, I have continued to experience dizziness (feels as if I am on a boat upon movement) and severe fatigue each and every day. My symptoms are by far worse in the morning, as well as worse following physical activity. I have been passed around from specialist to specialist (multiple GI doctors, endocrinologist, cardiologist, neurologist, dietitian), and none have come up with an answer as to why I am still experiencing these symptoms. I am aware full intestinal recovery can take up to 2 years post-diagnosis, however, I was wondering if anyone else has experienced these symptoms and how long it took for them to finally feel better? As one can imagine, I'm drained from trying to function daily with these symptoms concurrently, as well as I'm becoming very discouraged despite staying positive to the best of my abilities. As far as diet goes, I am very strict with myself and have not had any type of gluten product in my household since time of diagnosis. I have had other food allergy testing performed, although all results come back insignificant for all other foods (eggs, corn, dairy, etc.). I am currently on a 6 week low FodMAP diet as prescribed by my dietitian, but have yet to see any positive results. The only other supplements I have recently began are riboflavin, feverfew, and magnesium, all prescribed by my neurologist for migraine prevention. I am open to any and all possible suggestions and encouragement! Thank you!
  13. Hi, I’ve been really struggling to manage my symptoms of possible celiac disease and was just hoping for some guidance. (This is about to be very long so I’m sorry) Early December I had a bad fall and suffered some trauma to the head and was also under a lot of stress due to mock examinations. For a while I had been feeling fatigue but all of this was amplified after the fall and I was struggling to stay awake in lessons/ would just collapse after college. I was also having bad pain sometimes after eating and would get my worst fatigue after meals/ during the afternoon/ evening. I paid a visit to the GP and got some blood work done which came back low in iron and also high for celiac (very surprised but I do have a cousin with very bad celiac, been hospitalised etc). I got put on iron tablets and booked in for an endoscopy however this got cancelled due to the COVID-19 situation. My issue now is that my GP has advised to stay on the iron (I am starting my 5th month on 210mg 3x a day) and also keep eating gluten as we don’t know when my endoscopy will be as it could be a quick turn over (as in find out about it and then have it the week of) so we want to minimise chances of a false response. However I’m in such bad pain and so fatigue, my bloating is so severe I go up a dress size/ 2 and it’s like rock solid. My mum thinks I should cut out gluten for the foreseeable future to ease my pain. Just wondering if anyone can help with suggestions/ a bit of hope that things won’t stay like this. Many thanks
  14. Hey guys, quick background on me. I am a highly active, 30 year old male, and was diagnosed with Celiacs a little over two months ago, immediately went gluten free and many of my symptoms began to resolve within about a month (diarrhea, major weight loss, extreme fatigue, tiredness, brain fog, headaches, to name a few). I returned to working out like I have the majority of my life (primarily weight lifting with high volume 5-6x/week) and have remained extremely diligent in proper diet. However, at approximately the two month mark of being strictly gluten free, I’ve began feeling extremely sickly again without reason I can identify (extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned). Aforementioned, I have remained gluten free, have even significantly limited dairy/lactose, but still feel horrible and on the brink of anxiety each day. Mornings are by far the worse time for me, as I am extremely nauseous, dizzy, and feel as though I will pass out with any activity. Furthermore, I know it has only been around 8 weeks since diagnosis, however, I have been unsuccessful in putting any weight back on despite going on a high calorie diet (3,500-4,000) each day. As a former athlete and still extremely active today, my body has been used to accepting high caloric days as normal. From a diet perspective, I have switched from whey protein to soy/pea proteins, take a recommended multivitamin daily, take an iron supplement daily, take a recommended prebiotic/probiotic/digestive enzyme supplement, eat plenty of lean meats, fruits and veggies, rice and beans, and refrain from eating any type of processed food. I had food sensitivity blood testing done and all food categories came back insignificant or negative for sensitivity (except tTg-IgA testing at time of diagnosis for gluten of course). My overall question is, why all of a sudden is my health beginning to deteriorate again after when I thought I was making good progress after going gluten free? Has anyone else experienced this by chance? Is there some type of “rebound effect” associated with going gluten free that anyone else may have experienced around the 2-3 month mark? I welcome any and all feedback, please! I am becoming extremely frustrated, worried, and anxious as this is a major life change for me. - Eric P.
  15. Iron: 17 mcg/dL (Low) November 11, 2016 Ferritin: 1.8 ng/mL (Low) November 11, 2016 RBC: 4.05x10^6/uL (Low) November 11, 2016 Hemoglobin: 8.5 gm/dL (Low) November 11, 2016 Vitamin D: 25.7 ng/mL (Low) February 22, 2017 ANA Profile : February 27, 2017 FANA: Positive FANA Titer: 1:640 FANA Pattern: Homogenous Gliadin IgA: 2 units June 29, 2017 Gliadin IgG: 3 units June 29,2017 TTG Ab IgA: <1 units/mL June 29, 2017 TTG Ab IgG: <1 units/mL June 29, 2017 Immunoglobulin A: 59.1 mg/Dl (Low) July 10, 2017 Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017 Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017 Immunoglobulin E: 5 KU/L July 10,2017 My RBC and Hemoglobin have come up and are normal. My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL. When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks. My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high. My whole body hurts especially my finger joints, back , knees and really all of my joints. Going to the bathroom at least 2 times day and sometimes up to 5 times a day. Extreme fatigue, Brain fog, extremely emotional and irritable. I just went gluten free July 1, 2017 and am starting to feel better. Joints feel better, I can sleep better, my mood is better. Celiac or maybe just gluten sensitive? Any thoughts? What do my labs say about me?
  16. Celiac.com 03/02/2009 - Many people suffer symptoms of fatigue prior to being diagnosed with celiac disease or gluten intolerance. For some, fatigue is a major reason for initially seeking medical attention. In both Celiac disease and gluten intolerance, malabsorption of nutrients can result in weakness, lack of energy, and even iron-deficiency anemia. Iron-deficiency anemia can be compounded by gynecological conditions, especially in peri-menopause. A thorough physician will test for and sometimes treat underlying vitamin and mineral deficiencies common in malabsorption disorders such as celiac disease and gluten intolerance, and after three-to-six months, many symptoms related to such deficiencies will resolve. Some alternative practitioners even offer injectables such as B-Vitamins and Magnesium. Oral supplements range from plant-based liquid concentrates, to sublingual drops, to tablets and capsules, allowing a range of options for sensitive individuals. Recently I spoke to a gluten intolerance group where a woman raised an important question. She described her symptoms, which included profound fatigue and asked, “What can you do if extreme fatigue persists on a strict gluten free diet and supplements, even after a year or two?” At the time, I wasn’t sure how to answer her, other than to suggest, off the top of my head, that she ask her Naturopath to do a saliva-based adrenal function panel. I guess my reasons for doing so were based on fifteen years of nursing experience and the fact that she was probably about my age, and possibly in peri-menopause, which I knew places an additional strain on the adrenals. In women the sex hormones are produced in varying amounts in both the ovaries and adrenal glands. A smooth transition through menopause would involve a gradual transition that decreased production of sex hormones by the ovaries, and increased production of sex hormones by the adrenal glands. But, what happens if there are other factors in a woman’s life that prevent the adrenals from assuming this additional burden? Coupled with the added strain that menopause places on the body and indirectly on the adrenals, a triggering event like a significant accidental gluten exposure, an increase in food allergies, or infection with a virus or bacterial illness, could simply tax the adrenals beyond their ability to meet this increased demand. The Gluten Connection Although relatively tiny, the adrenals have a very big job. Adequate levels of the adrenal hormone cortisol are required by the body to help prevent inflammation and tissue destruction, keep blood sugars level, moderate nervous system responses, and attempt to maintain homeostasis, or the steady-state of balance in the body. Periodically experiencing incredibly painful episodes of inflammation and tissue destruction from an accidental exposure to gluten, the protein found in wheat, barley, and rye, places a huge strain on the adrenals, including a sudden demand for high cortisol levels to help moderate the inflammatory response. Each time, the body is able to cope, but with each experience it may take longer for the adrenals to recover. When stress is prolonged, these high levels of cortisol must be maintained. And if there is no significant recovery period during which the adrenals can rest and replenish themselves, adrenal fatigue results. After doing some research for a new book I’m working on, I found another possible connection, especially for those with celiac disease. Many of us are aware of the strong, well-documented association between celiac disease and autoimmune thyroid disorders like Hashimoto’s thyroiditis. We also know there is a relationship between celiac disease and another endocrine gland, the pancreas. (Diabetes has a strong correlation with celiac disease.) Autoimmune hepatitis affects the liver – the body’s largest internal organ. Nephropathy, which affects the kidneys, is a very serious, less familiar disorder linked to celiac disease. But, we rarely hear about the adrenals, especially in relation to celiac disease. Could there be a connection? In fact, there are several important connections that are often over-looked. In researching autoimmune disorders, I learned about a disorder called “Autoimmune Adrenal Hypofunction” or “Autoimmune Hypo-Adrenalism”, which sometimes occurs together with other autoimmune disorders. As in other autoimmune disorders, the body produces antibodies targeted against its own tissues, in this case, the two walnut-sized adrenal glands that sit atop the kidneys. While thought to be relatively uncommon, Autoimmune Hypo-Adrenalism is most closely associated with celiac disease. In fact, I was quite surprised by the wealth of information on this association, based on many studies done in Italy and Ireland, both countries where celiac disease is common. While the connection between other autoimmune disorders and celiac disease is generally accepted in the U.S., the case for adrenal insufficiency in relation to celiac disease has not appeared to have received as much attention. So, it can’t hurt to mention this link here, since it has the potential to affect those with persistent fatigue and/or chronic inflammatory disorders such as interstitial cystitis, in which low cortisol levels may play an important role. Stress, Food Allergies, and Nutrition As anyone who has studied stress and the allergenic response knows, diet does matter. One of the least recognized forms of stress is untreated or unidentified food allergies and sensitivities. In Dr. Wilson’s book, “Adrenal Fatigue – the 21st Century Stress Syndrome”, he writes, “It has long been observed that people suffering from adrenal fatigue have a definite increase in allergic responses or become allergic to things that did not previously bother them.” This is because levels of the adrenal hormone cortisol, the most powerful anti-inflammatory substance in the body drop, making it “more likely that the body will have severe allergic (inflammatory) reactions and that these reactions will be more severe.” Another factor in adrenal function through is nutritional status. As we know, many people with Celiac disease or gluten intolerance do have some underlying nutritional deficiencies, and these become more difficult to address as we age. Certain vitamins and minerals are essential to replenishing and nourishing the adrenal glands. Ideally, we’d obtain these essential nutritional components through our diet. In cases of adrenal fatigue, it is important to discuss with your physician what you can do to help your adrenals recover, both by eating an ideal diet, and taking recommended supplements, including B-Vitamins, Vitamin C, Magnesium, and specific herbs and amino acids. Symptoms of Adrenal Fatigue Ten relatively common symptoms of adrenal fatigue are listed below: Fatigue Depression and memory difficulties Sleep Disturbances Migraine Headache An increase in allergies or the development of new allergies Alcohol Intolerance Low Blood Pressure and Low Body Temperature Blood Sugar Regulation Problems (Hypoglycemia) Low Libido & Hormonal Imbalances Inflammation Adrenal TestingTesting for adrenal insufficiency isn’t rocket-science, but an established and useful diagnostic tool that might have important implications for poor regulation of inflammation as well as for general health. The first step is to check for a low cortisol level, in combination with other hormones, including DHEA, Progesterone, Estrogen, and Testosterone. This is easily done with a safe, reliable, and cost-effective serial saliva test, with four samples taken at specified time periods throughout the day. Your physician often stocks these kits in the office, and can provide one for you to use and then mail to the laboratory. The laboratory will perform the tests, and send the results to your physician, who will discuss them with you. The whole process takes a week or two, and can be repeated every few months to track your recovery. It is not expensive, and may even be covered by your insurance. In fact, you do not need a doctor to order the test, but the results will be of little value without a physician to interpret them, make a plan to address any abnormal findings, and support and monitor you in your treatment. Blood tests, including and ACTH challenge, may be indicated, but a serial saliva test is a good first step. Adrenal Recovery Any program of adrenal recovery must incorporate lifestyle changes that include avoiding stress or dealing with stress in healthy ways, such as exercise, relaxation, and meditation. Eating an anti-inflammatory diet, free of sugars and alcohol, is essential, as continuing to follow a strict gluten-free diet. This article is partially excerpted from “The Better Bladder Book – a Holistic Approach to Healing Interstitial Cystitis & Chronic Pelvic Pain through Diet, Lifestyle, & Self-Treatment”, available soon through my website. The book provides documentation for all research and factual content, including the information in this article.
  17. Please help, I am 30.All my life from childhood I had upset stomach pain and cramps.As a child was frequently treated for giardia and still had cramps.As a child so strange I had bumps with water on skin.Not redness nothing else.Just bumps filled with water all over my body.Later I never had these.But in my early teens I started with fatigue anxiety.Then extreme fatigue.Hair fallen.Eyebrow loss over a few years to nonexistent eyebrow.Always low iron even with supplementing.Low vitamin D3.Low calcium and magnesium.Gastrointestinal for a few months now I have cramps daily.Diarheea almost daily.Treated for parasites and giradia.nothing changed. OTHER symptoms. Bone pain.Spinal pain.Headache.Eye floaters.Done MRI and eye exams nothing all clear Low iron again at blood work. Low exercise tolerance. So bloated I seem like pregnant in 9 months even !!!if i lost weight the last three months Itchiness all over body but no bumps just redness Itchiness extreme on the scalp. Petechiae small red spots all over my body this is for years now. Tried gluten free even though in my country very hard to keep up with this. Only for few days then gave up and tried again and so on. Did some blood work but only 2 antobodies and not IGa and Igg judt one of them.Negative.this was two years ago. I don't know what to do. Oh and mouth ulcers. And have gas i am afraid because i can hardly control because i am extremely bloated. I am desperate. Thanks.
  18. I have been gluten free since Feb 2012. Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted. To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease. Now I'm not sure. The dr.s have no clue and I believe they are ready to send me for a psych consult. The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it. My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time. I have been doing better since the Fasano diet, but these things have stood out glaringly. I have persisting dizziness and lightheadedness. Fatigue is severe. I wake up fine, and do as much as I can before I am a waste case for the rest of the day. That is between 6-9 am... and then I am exhausted for the rest of the day. If I rest, I can get a little energy back and it is gone quickly I feel like a cell phone that can't hold a charge. I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation. My face goes grey, my eyes are sunken. I need assistance getting into a chair. It takes a few hours before this passes. I feel like I am trapped in my body. Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain. It is very concerning. However, the neurologist has never heard of this before. (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!) When these episodes pass, they leave me exhausted for hours to days. Please can someone advise if they have had some of the same symptoms? My ANA is high, 640 My ttg is around 29. I live in 100% gluten free house. Including all of my beauty products.
  19. I hope not to make this long but I am in dire need of advice. I have been having these episodic seizure and stroke like symptoms. It starts with my eyes fluttering. I typically slump over. My legs work but I can't lift my head. Sometimes the left side of my face goes numb. I am completely unable to think or speak. It's like my mouth won't move right. If I can move my hands/arms, then I can not write or text. I also have difficulty walking (the leg I broke in a car accident gets really tight) This happens when I wake up, at work, walking, in shower, and sometimes in mid conversation, and once while driving (don't drive anymore). I've been to many doctors. Some nerve in my neck is crooked or slightly blocked. Referred to neuro. He thinks its a seizure. Long story short after several EEGs, MRI's, an MRA, and blood test they find: white spots on brain (unusual for age), positive western blot for Lyme (IgG), negative EEG, negative MRA. No strokes. negative spinal fluid. negative for lupus. Later, negative for Lyme on a C6peptide test. took Topamax and that stops migraines I was having, but not the episodes. referred to psych. she says no mental health issues after examining me. continue to see her because I'm so stressed about not feeling well. My general diagnosis is complex migraines. At some point I had a seizure like episode and was diagnosed with a complex partial seizure, but that was changed after the EEG's. June 2013: Go alcohol and gluten free. Then just gluten free. Miraculously I had no episodes for a week. After 2 weeks my hands and feet aren't numb. Oct 2013: Celiac panel is negative. My red blood, iron, and hemoglobin are all very low Now: Despite being gluten free, I find that I constantly get "glutened" by little things (bun accidentally left on my burger, corn tortillas that aren't really gluten-free, medicines etc) . One glutening can result in multiple episodes. The longest I've gone is a week and a half without episodes. Before June I had them everyday multiple times and they were very severe. I can't find a doctor that will answer my questions to save my life. I live near NIH, so you would think there are plenty of intelligent docs here but I have been largely unsuccessful. I like to work hard and I am ashamed at my performance (work and school) because I have these uncontrollable episodes. Does anyone struggle with this? What doctor did you go to? Have you been able to get anything other than "don't eat gluten"? Are you able to get a diagnosis?
  20. Hello... New to the board, first post :). Glad I found you... History.... I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46). Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test). Results came back with dangerously low iron, low vitamin D. Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts. I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. I feel at a loss... I want my life back. Any words of wisdom?
  21. TL;DR Mom is a celiac. Father, Brother are lactose intolerant. Sister has IBS problems as well. I believe I have gluten allergy, even though every doctor test is negative. But I do have geno-type for celiac. Marijuana has become my only solution to stop the pain and get hours of relief. No other medicine works. but pot lets me go to work, without crapping my pants and getting paid to s$#&. Anyone else in my particular situation or does everyone else feel it differently? Hello, My name is Ryan and I am a twenty-four male, 300lbs, 6ft 4in. Ive been haunted by stomach/head aches for almost my whole life. Gaining depression in middle school, which downward spiraled by the time I was 20-21. Ive been diagnosed with Chronic Lyme Disease which is, I guess, controversial among physicians on whether or not it is actually a real thing. My Dr. gave me that diagnosis at 16, after going to him with Lyme for the 8th time. My mom figured out she was a celiac when I was 20 years old, so I then started on a gluten-free diet and felt good, but didnt realize that it was actually helping me. I went back on gluten to have the testing done, but it came back negative. So I said okay, I'm not allergic to gluten it must be my imagination or something else and went on my way. Had two more doctors tell me I probably wasnt Gluten intolerant. I then started to get serious urinary issues, and started to go to urologists. They couldnt find anything wrong, so I went to a GI and they told me nothing was wrong, after doing all the testing over the years, they said I wasnt allergic to Lactose or Gluten, however my most recent GI said I have a Geno-type for it. MFer*** I know its already here. It doesnt take but an hour and I am in gut wrenching pain and cant get off the toilet for sometimes hrs, with breaks in between (4 times on) and the pain and discomfort lasts for hrs. The doctor has put me on every kind of medicine and nothing works. He said well you dont have anything we test for, so I'm just going to say you have IBS. Which still makes sense, because there is times, I know I havent touched gluten ( I dont think, I'm not a very good label checker) or cheese and I'm still in the BR. I am currently on 50MG Amytriptaline (spelling) for the depression, urinary issue and intestinal inflammation(whether its there or not, the gastro put me on it, and it keeps the other two things at bay, so I cant go off it. However, it doesnt do too much for the stomach problem. The only solution I have found is Marijuana, which I have only recently started (1yr), but man does it make a difference. Now I can have a full time job, but I have to smoke to go to work. Which isnt my most favorite thing to do , but Ive gotten used to it and it helps me tremendously. So its become my catch all illness defeater. However, it only puts my intestines on hold(how long depending on how much pot, but usually a small amount keeps my stomach at bay for about 6-8 hrs. I can suffer the last hr at work, but at least I'm not in the bathroom for my whole shift. Which is great, its an amazing feeling to be at work without something plaguing you. I still dabble in gluten, like 1 slice of pizza, here and there (bc im supposed to be not gluten intolerant) but the devil strikes every time. Im sure Ive missed some stuff, but would like some feedback on the route I should take, get some insight, my wife said I should go to a holistic doctor, which has amazing reviews near us, but its 500 dollars cash to get the evalution and its not covered by insurance. She thinks I'm allergic to soy, which I guess is in both lactose and gluten?? But ive never been tested for that. I want some light to follow. Thanks Is it typical to feel an attack so fast? It happens between 15 minutes to 2 hrs, giving the span, but usually an hour. Does everyone react the same way to gluten? - I dont get diarrhea or constipation, I get a little of both, its loosely packed and hard to pass with excruciating pain. Other times ( I think this is the IBS part), it'll just come out of no where, but its not super painful, but I cannot hold it at all. Could all of my problems be Gluten/Lactose...or just part of it/none of it? Has anyone else gotten a negative test, but still said hell with it, Gluten Free? Are there any good, well organized mega threads for stuff to not touch if you're allergic to gluten, especially lesser known things (to avoid oops moments)
  22. Hello Celiac friends, I am new to this world and I would really just love to get some advice and possibly some questions answered. I am 20 years old and I was diagnosed about one month ago. Since then I have been struggling to stick to my gluten free diet and also struggling hard to stay positive. Here are some things I have learned thus far: 1) Gluten hides EVERYWHERE. 2) Celiac Disease gets little to no recognition and I feel very thankful that I found out what I was facing before it caused more problems. 3) People without this issue, do not understand. Before I was diagnosed I genuinely thought I was going crazy. Out of no where I suddenly had no energy and had immense trouble getting anything accomplished, which is basically the worst case scenario if you're a junior in college. This new sickly feeling then grew into severe anxiety and panic attacks. Then came the never ending diarrhea and loss of appetite. It got to the point where I didn't want to eat at all. I had never experienced any of this before and it caused me to become massively depressed. Once I was diagnosed, everything seemed to make sense. I felt so ready to begin my diet and to return to my normal self. Well here I am, a month in, and I feel slightly better but not back to wellness. I am still extremely tired, and my brain still has trouble functioning. I am bloated all of the time and I also experience almost daily abdnominal pain. I am frustrated and I need answers. Sorry for rambling but it's hard not to when speaking on this subject. But here are my main questions: 1) How long were you on a gluten free diet before you began to feel well & happy again? 2) Is there a light at the end of this tunnel? 3) Is there anything I can do to assist my body in healing? 4) I am still experiencing mild anxiety, should I treat this as a separate issue or do you think they could be connected? This summer I am supposed to visit Europe for the first time (a dream I've had since forever) and I also turn 21. I would love to feel at least close to normal by then. I am young & I don't want this disease to keep me from living my life. Any answers or advice would be greatly appreciated. I hope when you read this you are feeling well and in a good place on your journey. Sincerely, Extremely Frustrated Human Being
  23. 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)
  24. Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017). I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free. At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc. I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months. I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it! Thanks so much, Sofie
  25. A lot has happened since I last blogged. There are obivous reasons for me being tired; I have two kids under the age of 3, I'm a celiac, I've got hypoglycemia...yadda yadda. There are not so obvious reasons; chest pain at night, ache down the arm, lymphnodes swollen up neck (Cat scan confirmed), noduel on thyroid (cat scan confirmed), scar tissue in left cerebral hemisphere (MRI scan). My only concern is the swollen lymph nodes. The experience with lymph nodes was non hodgkins lymphoma. I seem to be an angry bear when I eat or drink sugary stuff. My neck seems to swell up more too. I get a head ache or migrane or am generally not with it. I had an frightening experience the other night, I don't know how it's related to the majority of the postings, but I woke up 2 hours after sleeping and the bone in my forearm was numb. The skin, the muscle was normal but the done inside was totally numb. The are ached real deep, so I just kept moving it like it were a normal numb foot or hand experience. After about a while it got better so I laid back down. I had been sleeping on my stomach with my head turned to one side. I don't normally sleep like that. So...my diet has changed based on those responses. I'm cutting the sugar way down. The sugar I get is from the Silk brand coconut milk (original flavor). I eat fruit, have organic gluten-free corn flake cereal. I'm just really wowing you now aren't I. lol I sure miss sugar. But it does not make me feel better. Not at all. I'm taking: gluten-free Women's NutriGold multi vitamins Swason's copper supplements with vegetable glaze (glaze keeps me from throwing them up) EnzymeScience Intolerance Complex Country Life's Ginseng Supreme Complex Vitamin K supplement when I need it *I need to have a regular exercise. It needs to be every week so that my system has time to work out junk in my lymphnodes. Drinking water and stressing out around the house or sitting on my rear doesn't flush the system like exercise does. Note: it is overwehlming to talk to doctors about my health history. They ask too many questions, I provide too much information. Makes for a depressing day for both people. There is no instant cure. It takes time, experience, knoweldge and lots of prayer. "Keep showing me Lord, I don't want to fall behind. You are my Great Healer, you'll get me there at the right time. Amen!" With more thought to this entry; I'm going to look up some various things that could be linked to the experiences with sugar and the arm bone falling asleep as well as my exhaustion. There is a possibility that I have leukemia. I'm appearing to have a majority of the symptoms except the blood test for white blood cell counts and the bone marrow test. I've had a bone marrow test back when I finished cancer treatments at the hospital, they warned me I would need to have a bone marrow transplant if I had to do chemo again. No thanks. I'd like to do what I can that is provided here on the earth and trust God for healing if He desires to heal me. There could be greater reason for me to suffer and bear my cross than just "find a cure! panic..." that's just futial. What's the purpose of a story that's helps educate others and build their faith if everyone found healing from mankind in the hospital? Hospitals have not always existed, neither have doctors. God has. So let's utilize His healing power and seriously show up this world's view of "cure".
  26. In the Friday, February 9, 1996 edition of the Independent newspaper (UK), there was a short article reporting research into ME (myalgic encephalomyelitis) by doctors at the Royal Hallamshire Hospital in Sheffield. Their research was published that same weeks Lancet. Mysterious symptoms, including muscle weakness, wasting, and poor coordination and balance may be due to an undiagnosed allergy to wheat, barley, oats or rye, according to new research which may have implications for some people with ME...A study of 53 patients with these and other unexplained neurological symptoms, found that nearly three-fifths of them had antibodies to gluten in their blood...none of the patients in the Sheffield group had been diagnosed with celiac disease but when samples of tissue were removed from their gut, more than a third showed evidence of the disease or inflammation of the middle and lower gut.
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