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Celiac Disease & Gluten-Free Diet Forums

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Celiac Disease & Gluten-Free Diet Blogs

  • kareng's Blog
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  • An Unmistakeable Journey
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  • My tummy used to hurt....
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  • Trials and Tribulations
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  • ATC_BS_MS' Blog
  • learning2cope's Blog
  • Research on South African Celiac Tours
  • lindylynn's Blog
  • Celiaction's Blog
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  • Melissa.77's Blog
  • Keating's Not-so-Glutenfree life
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  • Coeliac, or just plain unlucky?
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  • Scott's Celiac Blog
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  • Searchin for a Primary Care Dr. In Redlands That is Knowledgeable about Celiac disease
  • num1habsfan's Blog
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  • Celiac-Positive
  • Jason's Mommy's Blog
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  • I love my plant Cactus <3
  • Chele's Blog
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  • Blues Boulevard
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  • Inspiration
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  • Michael Fowler's Blog
  • Living in Japan with Ceoliac Disease
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  • MJ
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  • Joe pilk
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  • HONG KONG GLUTEN, WHEAT FREE PRODUCTS
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  • Gail Marie's Blog
  • Healthy Food Healthy You
  • SydneyT1D - Diabetic and Celiac YouTuber!
  • GFGF's Blog
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  • SMAS: www.celiac.com
  • gardener1's Blog
  • Naezer's Blog
  • JordanBattenSymons' Blog
  • JillianC
  • Sugar's Blog
  • Blanche22's Blog
  • Jason's Blog
  • Gluten-Free Sisters :)
  • Eab12's Celiac Blog
  • ohiodad's Blog
  • Newly Self Diagnosed?
  • misscorpiothing's Blog
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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
  • 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!
  • Debado
  • Nonna2's Blog
  • Schar Chocolate Hazelnut Bar (Gluten-Free)
  • Diane
  • pnltbox27's Blog
  • Live2BWell's Blog
  • melissajohnson's Blog
  • nvsmom's Blog
  • Diagnosed with Celiac Disease and Still Sick
  • Coming out having gluten intolerance and celiac disease
  • snowcoveredheart's Blog
  • Gluten Free Nurse
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  1. Celiac.com 07/09/2019 - Everyone in the Celiac community has read the press release about ImmusanT stopping the Phase 2 clinical trial of their drug Nexvax2. The drug was going to modify the immune system to ignore gluten. The hope was no more worries about cross contamination! However, in late June, ImmusanT issued a press release stating, "Nexvax2 did not provide statistically meaningful protection from gluten exposure for celiac disease patients when compared with placebo." Wait what? Let's go back a bit and talk about my experience in the clinical trial. I was in the Nexvax2 clinical trial. It consisted of five phases. The first phase was screening where they got all of your medical records that confirmed a celiac diagnosis and a gluten challenge. The gluten challenge was drinking a nasty gluten drink with the equivalent of 2 slices of bread and to evaluate your reaction and confirm that it was violent enough. The second phase involved updosing. We had to go to the center twice a week for six weeks to receive dose increase injections of the medicine. (I'm going to refer to the test drug as medicine - I don't know if I got Nexvax2 or placebo, but it's just easier to say medicine.) During this phase, I did experience some side effects. Occasionally I would be exceptionally tired or have an upset stomach. It was not bad and nothing that couldn't be managed with a nap and acetaminophen. The third phase was maintenance dosing. We had 10 weeks of bi-weekly self injections of the full dose of the medicine. The fourth phase was the food challenges. The fifth stage was post study testing. Last time I wrote about my experience, I was all the way into self-injections. I was given 20 pre-filled auto-injectors. I was given a schedule and a log to note when and where I injected. All of these shots went into my stomach. My abdomen was divided into 4 quadrants at my belly button - upper right, upper left, lower right, and lower left. I rotated where the shot went into my abdomen. They didn't hurt at all. I also noted the date, time, and whether or not I received the full injection. During this time, I never felt better. My energy levels were up. My weight was dropping without even trying. I was sleeping better. I was exercising better. I had normal bowel movements—which I haven't had in over 10 years—long, soft, well-formed just perfect. Dr. Oz would be proud. All of my celiac symptoms went away. It was like I was normal. This was a very, very good time for me. At week 6 of the 10 maintenance doses is when the food challenges began. There were three food challenges. In the three challenges, one challenge would be gluten, one challenge would be placebo, and the third would be of their choice, either gluten or placebo. So, I could potentially get gluten twice or a placebo twice. For the first challenge they brought out a big white box with my name on it. Inside were three smaller boxes labelled 1, 2, and 3. The smaller boxes contained a shaker bottle, water, and the powder that could be gluten or placebo. If it's gluten, it has the equivalent of two slices of bread. To start the test I had five minutes to consume the drink. This part was mentally challenging for me. In the first phase of the study, I knew I was getting gluten. I could prepare. I knew I was going to be sick and was doing this on purpose for science. That I could handle. This time I didn't know whether I was getting gluten or not. It is mentally tough to not know what you are getting. What happens if I react? What happens if I don't react? Does that mean this is a placebo? Does that mean I got a placebo instead of the medicine? What if I got the drug and I still react? Am I an outlier? What does that mean for the study? All of these things were going through my head as I was mentally preparing to drink the beverage. I cannot explain how challenging it was to drink that drink with the time pressure, not knowing what would happen. The first challenge went well. No reaction. I was a little nauseous but nothing like my first trip down the gluten road. All was well. It would be two weeks until the next challenge. Here's where things go a little sideways. I had to go to California between the first food challenge and second food challenge to help a relative who was recovering from a stroke. I packed my study medication, got on a flight, and flew out to the West Coast. Getting the auto-injectors through security was easy with my doctor's note, as well as the frozen ice packs needed to keep the Nexvax2 cold. On my first day in California I woke up with pink eye and a terrible cold. Off to urgent care I went for medicine because I can't risk giving my relative pink eye or a cold. I got pink eye medicine and amoxicillin. I was in California for about a week and planed to fly home the following Tuesday. I finished the antibiotic on Tuesday, and did my injection on Wednesday, per the protocol. Thursday I did the food challenge. This second challenge did not go well. I threw up about an hour after drinking the food challenge drink. That stunk. But I will say this. When I drank the gluten drink at the beginning of the study, I was sick for a week. On the couch with extreme exhaustion, gastrointestinal distress, and just general yuckiness. When I woke up on Friday, I didn't feel bad. I felt quite good. The change between feeling bad for a week and being able to bounce back from a glutening was glorious. Not all that is good, can stay good. At about 2:45 that afternoon, my left ring finger became exceptionally itchy, red, and started to swell. I was on my way to pick up my kids from school and stopped to buy some Benadryl cream for my finger. As the day progressed, my finger started to swell and continued to be itchy. By 5 that night, the swelling and itchiness had spread to my palm and my right hand was beginning to itch. By 7 that night both of my hands were so swollen I couldn't make a fist. I had been drinking Benadryl like it was wine and it was not making a dent in the itch or the swelling. By 9 that night, my neck started itching. By the time I left for the Emergency Department at 11 that night, my hands were so swollen I couldn't bend my fingers and both my hands and my neck were incredibly itchy. After a few hours in the waiting room, I saw the doctor and he said I was having an allergic reaction. He contacted the study doctors confirming that I was having an allergic reaction. They said to make sure I was safe, give me whatever medication was needed, and don't worry about the study. My health and safety came first. I was given IV Benadryl and steroids and sent home. One of the reasons someone was not going to be able to be in the study was taking an oral steroid 6 months prior to the first injection. I was lying in the ER four injections from the end of the study realizing that my participation in the study may be over. The ER doctor did not know what could have caused the reaction and wouldn't hazard a guess, but did say that an allergic reaction to amoxicillin could start several days after stopping amoxicillin. I was told to not do any more self-injections until further notice. After a few days, the swelling in my hands went down and returned to normal. There doesn't seem to be any long term effects from this episode. Over the next few days, the study doctors and the people from ImmusanT talked about my case. They decided for my safety that I should be removed from the study. I felt like my rocket engine propelling me toward a cure just flamed out. But they were right. We don't know why I had a reaction and we could not risk me having another, potentially more severe reaction next time. I had to go to the study center to return the four remaining auto-injectors, do final blood testing, and final testing for the study. It was a very sad day for me. I felt like a failure. My body failed and there was nothing I could do about it. I still feel like that study is unfinished and it makes me sad to write my story. Reading the notice that the Nexvax2 trial was terminated early was another blow to me. It was even worse knowing how good I felt on the medicine. It was worse knowing that after the food challenge my reaction was totally different than the first gluten challenge. I believed it worked for me. I feel like I failed, not the medicine, by having an allergic reaction. So when they stopped the trial, I felt like a failure again. Looking ahead. I hope they look at the data and can find something good in it. I hope they are able to see that the daily journal of side effects went to almost zero when I was on the medicine compared to symptoms almost daily before starting the medicine. I hope they can retool the study to maybe not test against such a high gluten dose. I mean since when is cross contamination the gluten equivalent of 2 slices of bread? Normally, if we get glutened, it is a much smaller amount that makes us sick. Heck, the FDA says anything more than 20 parts per million causes damage, so maybe they could test against a smaller amount of gluten. I think that's where I would look if I were the ImmusanT scientists. I also have to remember that Nexvax2 is only one of several drugs that are currently in clinical trials for celiac disease. While I hope to see Nexvax2 again, there are other drugs with real potential. I had hoped Nexvax2 was a cure, but I would be temporarily satisfied with something that allowed me not to worry about every single morsel of food I put into my mouth making me sick. As a side note, I write a blog and talk about clinical trials all the time. I found a celiac study looking for healthy volunteers. I had several healthy parents of celiac kids asking for more information so they could volunteer to help propel the quest for a cure forward. The idea that these parents are willing to put themselves in a clinical trial in order to help their children has always demonstrated the quiet hope for a cure that I think we all feel. I firmly believe the cure for celiac disease will be here in the next 10-15 years. I'm not sure what it may look like but I do know this—each person with celiac disease and has the ability to volunteer for a clinical trial should. It is worth the time and effort and will potentially pay big dividends in the future for all of us. Science can't advance without some of us putting our bodies on the line. In closing, my clinical trial ended in March. I believe my body is working better today than it did before the trial and it's now July. My old celiac body is creeping in, but it still isn't as bad as it was before the trial.

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  3. I kept a gluten-free diet for a long time, but I think there were a lot of so-called "hidden" gluten (in chocolates, coffee, sauces). Then I kept an ideal diet for a 7 days. After that I passed tests for antibodies IgA and IgG for gluten, they were negative. Does this mean that there was no hidden gluten in my previous diet? Or antibodies had been already left my body in that 7 days?
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