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Celiac Disease & Gluten-Free Diet Blogs

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  • Keating's Not-so-Glutenfree life
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  • Searchin for a Primary Care Dr. In Redlands That is Knowledgeable about Celiac disease
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  • JillianC
  • Sugar's Blog
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  • Gluten-Free Sisters :)
  • Eab12's Celiac Blog
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  • Newly Self Diagnosed?
  • misscorpiothing's Blog
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  • Petroguy
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  • Soap Opera Central
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  • Mr J's Blog
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  • CAC's Blog
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  • happyasabeewithceliac's Blog
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  • Cheryl
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  • Colleen's blog
  • DawnJ's Blog
  • Gluten Challenge
  • twins2's Blog
  • just trying to feel better's Blog
  • Celiac Teen
  • MNBelle blog
  • Gabe351's Blog
  • moosemalibu's Blog
  • Coeliac Disease or Coeliac Sprue or Non Tropical Sprue
  • karalto's Blog
  • deacon11's Blog
  • Nyxie's Blog
  • Swpocket's Blog
  • threeringfilly's Blog
  • Madison Papers: Living Gluten-Free in a Gluten-Full World
  • babinsky's Blog
  • prettycat's Blog
  • Celiac Diagnosis at Age 24 months in 1939
  • Sandy R's Blog
  • mary m's Blog
  • Jkrupp's Blog
  • Oreo1964's Blog
  • keyboard
  • Louisa's Blog
  • Guts & Brains
  • Gluten Free Betty
  • Jesse'sGirl's Blog
  • NewMom's Blog
  • Connie C.'s Blog
  • garden girl's Blog
  • april anne's Blog
  • 4xmom's Blog
  • benalexander60's Blog
  • missmyrtle's Blog
  • Jersey Shore wheat no more's Blog
  • swezzan's Blog
  • aheartsj's Blog
  • MeltheBrit's Blog
  • glutenfreecosmeticcounter
  • Reasons Why Tummy tuck is considered best to remove unwanted belly fat?
  • alfgarrie's Blog
  • SmidginMama's Blog
  • lws' Blog
  • KMBC2014's Blog
  • Musings and Lessons Learned
  • txwildflower65's Blog
  • Uncertain
  • jess4736's Blog
  • deedo's Blog
  • persistent~Tami's Blog
  • Posterboy's Blog
  • jferguson
  • tiffjake's Blog
  • KCG91's Blog
  • Yolo's Herbs & Other Healing Strategies
  • scrockwell's Blog
  • Sandra45's Blog
  • Theresa Marie's Blog
  • Skylark's Blog
  • JessicaB's Blog
  • Anna'sMommy's Blog
  • Skylark's Oops
  • Jehovah witnesses
  • Celiac in Seattle's Blog
  • March On
  • honeybeez's Blog
  • The Liberated Kitchen, redux
  • onceandagain's Blog
  • JoyfulM's Blog
  • keepingmybabysafe's Blog
  • To beer, with love...
  • nana b's Blog
  • kookooto's Blog
  • SunnyJ's Blog
  • Mia'smommy's Blog
  • Amanda's Blog
  • jldurrani's Blog
  • Why choosing Medical bracelets for women online is the true possible?
  • Carriefaith's Blog
  • acook's Blog
  • REAGS' Blog
  • gfreegirl0125's Blog
  • Gluten Free Recipes - Blog
  • avlocken's Blog
  • Thiamine Thiamine Thiamine
  • wilbragirl's Blog
  • Gluten and Maize-Free (gluten-free-MF)
  • Elimination Diet Challenge
  • DJ 14150
  • mnsny's Blog
  • Linda03's Blog
  • GFinDC's Blog
  • Kim UPST NY's Blog
  • cmc's Blog
  • blog comppergastta1986
  • JesikaBeth's Blog
  • Melissa
  • G-Free's Blog
  • miloandotis' Blog
  • Confessions of a Celiac
  • Know the significance of clean engine oil
  • bobhayes1's Blog
  • Robinbird's Blog
  • skurtz's Blog
  • Olivia's Blog
  • Jazzdncr222's Blog
  • Lemonade's Blog
  • k8k's Blog
  • celiaccoach&triathlete's Blog
  • Gluten Free Goodies
  • cherbourgbakes.blogspot.com
  • snow dogs' Blog
  • Rikki Tikki's Blog
  • lthurman1979's Blog
  • Sprue that :)'s Blog
  • twinkletoes' Blog
  • Ranking the best gluten free pizzas
  • Gluten Free Product
  • Wildcat Golfer's Blog
  • Becci's Blog
  • sillyker0nian's Blog
  • txplowgirl's Blog
  • Gluten Free Bread Blog
  • babygoose78's Blog
  • G-freegal12's Blog
  • kelcat's Blog
  • Heavy duty 0verhead crane
  • beckyk's Blog
  • pchick's Blog
  • NOT-IN-2gluten's Blog
  • PeachPie's Blog
  • Johny
  • Breezy32600's Blog
  • Edgymama's Gluten Free Journey
  • Geoff
  • audra's Blog
  • mfrklr's Blog
  • 2 chicks
  • I Need Help With Bread
  • the strong one has returned!
  • sabrina_B_Celiac's Blog
  • Gluten Free Pioneer's Blog
  • Theanine.
  • The Search of Hay
  • Vanessa
  • racecar16's Blog
  • JCH13's Blog
  • b&kmom's Blog
  • Gluten Free Foodies
  • NanaRobin's Blog
  • mdrumr8030's Blog
  • Sharon LaCouture's Blog
  • Zinc, Magnesium, and Selenium
  • sao155's Blog
  • Tabasco's Blog
  • Amanda Smith
  • mmc's Blog
  • xphile1121's Blog
  • golden exch
  • kerrih's Blog
  • jleb's Blog
  • RUGR8FUL's Blog
  • Brynja's Grain Free Kitchen
  • schneides123's Blog
  • Greenville, SC Gluten-Free Blog
  • ramiaha's Blog
  • Kathy P's Blogs
  • rock on!'s Blog
  • Carri Ninja's Blog
  • jerseygirl221's Blog
  • Pkhaselton's Blog
  • Hyperceliac Blog
  • abbiekir's Blog
  • Lasister's Thoughts
  • bashalove's Blog
  • Steph1's Blog
  • Etboces
  • Rantings of Tiffany
  • GlutenWrangler's Blog
  • kalie's Blog
  • Mommy Of A Gluten Free Child
  • ready2go's Blog
  • Maureen
  • Floridian's Blog
  • Bobbie41972's Blog
  • Everyday Victories
  • Intolerance issue? Helpppp!
  • Feisty
  • In the Beginning...
  • Cheri46's Blog
  • Acne after going gluten free
  • sissSTL's Blog
  • Elizabeth19's Blog
  • LindseyR's Blog
  • sue wiesbrook's Blog
  • I'm Hungry's Blog
  • badcasper's Blog
  • M L Graham's Blog
  • Wolicki's Blog
  • katiesalmons' Blog
  • CBC and celiac
  • Kaycee's Blog
  • wheatisbad's Blog
  • beamishmom's Blog
  • Celiac Ninja's Blog
  • scarlett54's Blog
  • GloriaZ's Blog
  • Holly F's Blog
  • Jackie's Blog
  • lbradley's Blog
  • TheSandWitch's Blog
  • Ginger Sturm's Blog
  • The Struggle is Real
  • whataboutmary's Blog
  • JABBER's Blog
  • morningstar38's Blog
  • Musings of a Celiac
  • Celiacchef's Blog
  • healthygirl's Blog
  • allybaby's Blog
  • MGrinter's Blog
  • LookingforAnswers15's Blog
  • Lis
  • Alilbratty's Blog
  • 3sisters' Blog
  • MGrinter's Blog
  • Amanda
  • felise's Blog
  • rochesterlynn's Blog
  • mle_ii's Blog
  • GlamourGetaways' Blog
  • greendog's Blog
  • Tabz's Blog
  • Smiller's Blog
  • my vent
  • newby to celiac?'s Blog
  • siren's Blog
  • myraljo's Blog
  • Relieved and confused
  • carb bingeing
  • scottish's Blog
  • maggiemay832's Blog
  • Cristina Barbara
  • ~~~AnnaBelle~~~'s Blog
  • nikky's Blog
  • Suzy-Q's Blog
  • mfarrell's Blog
  • Kat-Kat's Blog
  • Kelcie's Blog
  • cyoshimit's Blog
  • pasqualeb's Blog
  • My girlfriend has celiacs and she refuses to see a doctor
  • Ki-Ki29's Blog
  • mailmanrol's Blog
  • Sal Gal
  • WildBillCODY's Blog
  • Ann Messenger
  • aprilz's Blog
  • the gluten-free guy
  • gluten-free-wifey's Blog
  • Lynda MEADOWS's Blog
  • mellajane's Blog
  • Jaded's Celiac adventures in a non-celiac world.
  • booboobelly18's Blog
  • Dope show
  • Classic Celiac Blog
  • Keishalei's Blog
  • Bada
  • Sherry's blurbs
  • addict697's Blog
  • MIchael530btr's Blog
  • Shawn C
  • antono's Blog
  • Undiagnosed
  • little_d's Blog
  • Gluten, dairy, pineapple
  • The Fat (Celiac) Lady Sings
  • Periomike
  • Sue Mc's Blog
  • BloatusMaximus' Blog
  • It's just one cookie!
  • Kimmy
  • jacobsmom44's Blog
  • mjhere's Blog
  • tlipasek's Blog
  • You're Prescribing Me WHAT!?!
  • Kimmy
  • nybbles's Blog
  • Karla T.'s Blog
  • Young and dealing with celiacs
  • Celiac.com Podcast Edition
  • LCcrisp's Blog
  • ghfphd's allergy blog
  • https://www.bendglutenfree.com/
  • Costume's and GF Life
  • mjhere69's Blog
  • dedeadge's Blog
  • CeliacChoplin
  • Ravenworks' Blog
  • ahubbard83's Blog
  • celiac<3'sme!'s Blog
  • William Parsons
  • Gluten Free Breeze (formerly Brendygirl) Blog
  • Ivanna44's Blog
  • Daily Life and Compromising
  • Vonnie Mostat
  • Aly'smom's Blog
  • ar8's Blog
  • farid's Blog
  • Sandra Lee's Blog
  • Demertitis hepaformis no Celac
  • Vonnie Mostat, R.N.
  • beetle's Blog
  • Sandra Lee's Blog
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  • 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
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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
  • User Is it safe to use GB WhatsApp pro in 2024?
  • Bogaert's Blog
  • Janie's Blog
  • RaeD's Blog
  • Dizzying Disclaimers!
  • Dream Catcher's Blog
  • PinkZebra's Blog
  • Hibachi Food and Hidden Gluten Hazards (How to Celebrate Gluten-Free)
  • jktenner's Blog
  • OhSoTired's Blog
  • PinkZebra's Blog
  • gluten-free Lover's Blog
  • Gluen Free Health Australia
  • Melissamb21's Blog
  • Andy C's Blog
  • halabackgirl9129's Blog
  • Liam Edwards' Blog
  • Celiac Disease in Africa?
  • Suz's Blog
  • Gluten-Free Fast Food
  • mis_chiff's Blog
  • gatakat's Blog
  • macocha's Blog
  • Newly Diagnosed Celiacs Needed for Study in Chicago
  • Poor Baby's Blog
  • the loonie celiac's Blog
  • jenlex's Blog
  • Sex Drive/Testosterone can be Depleted by Certain Foods
  • samantha79's Blog
  • 21 Months into the Gluten-free Diet
  • WashingtonLady's Blog-a-log
  • James S. Reid's Blog
  • Living with a Gluten-Free Husband
  • runner girl's Blog
  • kp3972's Blog
  • ellie_lynn's Blog
  • trayne91's Blog
  • Gluten-free Lipstick!
  • Nonna2's Blog
  • Schar Chocolate Hazelnut Bar (Gluten-Free)
  • pnltbox27's Blog
  • Live2BWell's Blog
  • melissajohnson's Blog
  • nvsmom's Blog
  • Diagnosed with Celiac Disease and Still Sick
  • snowcoveredheart's Blog
  • Gluten Free Nurse
  • Gluten-Free Frustration!
  • Melody A's Blog
  • novelgutfeeling's Blog
  • Trouble Eating Out Gluten-Free...Good or Bad?!
  • dilsmom's Blog
  • theceliachusband's Blog
  • amanda2610's Blog
  • Pancreas and Celiac Disease Link?
  • epiphany's Blog
  • Patty55's Blog
  • The Latest Gluten-Free Food Recalls
  • kenzie's blog
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  1. Celiac.com 01/01/2024 - A recent review by researcher Evan D. Newnham delves into the evidence concerning the effects of gluten ingestion on gastrointestinal symptoms and small intestinal injury indices in individuals without celiac disease, but who may be gluten intolerant. Newnham, affiliated with the Eastern Health Clinical School in Australia, conducted a literature review focusing on interventional studies to address this issue. The findings highlighted a lack of comprehensive exclusion of celiac disease in some studies. In particular, an unblinded study that identified symptomatic responses to gluten didn't effectively exclude celiac patients, as many exhibited intraepithelial lymphocytosis. However, a more robust double-blinded, randomized, placebo-controlled re-challenge trial was reported. This trial included patients where celiac disease had been ruled out based on either normal duodenal histology on a gluten-containing diet or the absence of the HLA DQ2 or DQ8 haplotype. During the trial, participants were randomly assigned to receive 16 grams per day of either gluten or a placebo for six weeks. All participants experienced improved gastrointestinal symptoms on a gluten-free diet (GFD) for at least six weeks before enrollment. The study, comprising 19 participants receiving gluten and 15 receiving a placebo, revealed that the change in overall symptom severity from baseline to the final weeks was more significant for those receiving gluten. Within one week, symptoms like pain, bloating, satisfaction with stool consistency, and tiredness were worse for the gluten group compared to the placebo group. However, the mechanisms behind symptom induction were not identified. The study underscores the existence of non-celiac gluten intolerance and emphasizes the need for future research to address critical issues like determining the required gluten dose and understanding the mechanisms of action in non-celiac individuals. Read more in the Journal of Gastroenterology and Hepatology
  2. Celiac.com 10/25/2023 - Imagine eating a slice of your favorite bread and soon feeling unwell. Your stomach churns, you're tired, and maybe you even vomit, or break out in a rash. These symptoms can sometimes last for days or weeks afterward. What could be causing these symptoms? They might be related to gluten, a protein found in wheat, rye, and barley. But before you jump to conclusions, it's crucial to understand the differences between three conditions that share some similarities: celiac disease, non-celiac gluten sensitivity (NCGS), and wheat allergy. What is Celiac Disease? What it is: Celiac disease is an autoimmune disorder that primarily affects the small intestine. It's a lifelong condition that occurs when individuals with celiac disease consume gluten—a protein found in wheat, barley, and rye—and their immune system reacts by damaging the lining of the small intestine. This damage impairs the absorption of nutrients from food and can lead to a wide range of symptoms and long-term health complications. Symptoms: These can be diverse, ranging from gastrointestinal issues like diarrhea and abdominal pain to non-gastrointestinal problems such as chronic headaches and certain rashes. Some individuals with celiac disease may not exhibit any symptoms. Also, celiac disease is commonly mistaken for numerous other conditions. What sets it apart: Complete gluten avoidance is essential, along with meticulous efforts to prevent cross-contamination. Since it can run in families, screening for celiac disease is vital among relatives. It can develop at any age, so both pediatric and adult doctors can provide care. Treatment: Lifelong adherence to a gluten-free diet and regular follow-up care. Dietitians and healthcare providers guide patients in food choices, label reading, and lifestyle adjustments. Non-Celiac Gluten Sensitivity (NCGS) What it is: NCGS involves gastrointestinal and non-gastrointestinal problems triggered by gluten consumption. However, blood tests and biopsies for celiac disease may be negative. Symptoms: Similar to celiac disease, including abdominal pain, bloating, and fatigue. What sets it apart: There are some differences between celiac disease and NCGS: No Hereditary Link - Unlike celiac disease, NCGS is not hereditary, and shows no genetic component. Not an Autoimmune Disorder: NCGS is not an autoimmune disorder. Unlike celiac disease, it does not involve an autoimmune response or the production of specific antibodies. Symptoms Without Autoimmune Damage: Individuals with NCGS experience symptoms (such as gastrointestinal discomfort, fatigue, headaches) when they consume gluten, but these symptoms are not accompanied by the autoimmune damage seen in celiac disease. Diagnosis by Exclusion: NCGS is diagnosed by excluding celiac disease and wheat allergy through specific testing. There are no specific biomarkers for NCGS. Variable Sensitivity: Sensitivity to gluten in NCGS can vary widely between individuals, and the exact mechanisms underlying NCGS are still not fully understood. People with NCGS may be able to tolerate some gluten, up to the threshold causing symptoms. The restrictions and precautions regarding gluten and cross-contamination are less strict compared to celiac disease. Treatment: Despite negative celiac tests, patients with NCGS experience symptoms. Healthcare providers determine the amount of gluten causing symptoms and help eliminate it from the diet. Symptoms generally improve on a gluten-free diet, but consulting a dietitian is crucial to prevent vitamin and nutritional deficiencies. What is Wheat Allergy? What it is: Wheat allergy is an allergic response that involves the immune system, specifically IgE antibodies. When an individual with a wheat allergy consumes wheat proteins, their immune system perceives these proteins as harmful invaders and triggers an allergic reaction. Symptoms: Symptoms of a wheat allergy can vary in severity and may include hives, difficulty breathing, digestive problems, and, in severe cases, anaphylaxis, a potentially life-threatening reaction that requires immediate medical attention. What sets it apart: The primary treatment for a wheat allergy is strict avoidance of wheat and wheat-containing products. Individuals with a wheat allergy need to be vigilant about reading food labels, as wheat can be found in unexpected places, like sauces, soups, and processed foods. Wheat allergy is the only gluten-related condition where EpiPens (injectable epinephrine) may be used to stop severe allergic reactions. Allergists, rather than gastrointestinal doctors, provide diagnosis and treatment. Treatment: Strict avoidance of wheat and wheat-containing products. In case of an allergic reaction, an EpiPen may be used. Dietitians can assist in removing problematic gluten from the diet. In summary, while these conditions share some common features, understanding the differences is essential for accurate diagnosis and appropriate management. If you suspect you have one of these conditions, it's important to consult a healthcare professional for proper evaluation and guidance. Remember, self-diagnosis can be risky, and unreliable, so seek expert advice for the best diagnosis, treatment, and outcome.

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  4. Celiac.com 05/20/2023 - This is the final chapter of Dr. Jean Duane's eBook, and we would like to thank Dr. Jean Duane for publishing Gluten-Centric Culture on Celiac.com. Gluten Centricity We live in a gluten-centric culture where severe dietary restrictions are associated with diminished social activities. Feeling excluded and observing that gluten was a punch line in nearly every form of media encountered, I wanted to research associations between given “truths” to illustrate how gluten centricity affects the lived experiences of those with celiac disease and/or food sensitivities (Chapter 1). I felt there was a lot more to the lifestyle than just figuring out “what’s for dinner!” Living the gluten-free lifestyle seemed to negatively affect nearly every social engagement I attended. I felt isolated when not able to participate in simple acts of commensality with family and friends. Considering current numbers of Americans with dietary restrictions, I determined that I could not be the only one feeling this way. In the process of writing this book, I read hundreds of studies focused on people living with food allergies (Duane, 2019). Most studies centered on children, few on adults, and fewer on the social impacts. This led me to developing a nation-wide study concentrating on food-sensitive adults living with other adults to attempt to fill the gap in the literature. Those of us with gluten sensitivities sometimes find ourselves at odds in social rituals, from taking communion in church to sharing the same foods around the dinner table (Chapter 3). We’re even omitted from the USDA food guidelines (Chapter 2). Our disease often isn’t taken as seriously as other diseases that revolve around eating a restrictive diet such as heart disease or diabetes. Furthermore, women report not being “heard” by doctors, extending the time until diagnosed (Chapter 4). We are often met with suspicion, accused of being faddish, or exaggerating our needs. We are subjected to a host of attitudes that reinforce this behavior and that cause us to feel like we are taking risks in our efforts to gracefully navigate life. It’s Actually Common Awareness of gluten sensitivity is growing. As we age, many reach the threshold of no-tolerance and experience an onset of chronic physical conditions. Some never associate their maladies with their diet, but those who do usually make adjustments. Gluten sensitivity spans all ages, classes, and races (Fasano & Catassi, 2012), making it unclear why American doctors do not lead with celiac disease tests, and why it takes patients an average of eleven years to get a diagnosis (Green & Jabri, 2003). Perhaps it is because celiac disease did not appear in the 1994 reports from either the U.S. Department of Health and Human Services or the National Institute of Diabetes and Digestive and Kidney Diseases (Fasano & Flaherty, 2014). Though it was known in Europe since 1941 (van Berge-Henegouwen & Mulder, 1993), until the early 2000s, U.S. doctors seemed to think that celiac disease bypassed North America (Fasano & Flaherty, 2014). Commenting on its growing ubiquity, Grain Brain authors declare, “Gluten is this generation’s tobacco” (Perlmutter & Loberg, 2013, p. 64) and one of the “greatest and most under-recognized health threats to humanity” (p. 32). Awareness by medical professionals provides hope to all people whose immune systems treat gluten as a “component of a dangerous bacterium or bacteria…toxic to humankind” (Fasano & Flaherty, 2014, Loc. 638). Certainly, the statistics are compelling; however, gluten-intolerance is still under-diagnosed. Let’s face it. It’s a hassle to be properly diagnosed and can be a burden to live with. But diagnosis doesn’t have to be a social “death sentence.” This book is an attempt to help with the social aspects of living with food sensitivities. Understanding is the first step. Previous chapters identify the cultural constraints that make us feel isolated and subjugated from mainstream culture (Chapter 1 and 2). Next, we examine “vexing venues” (Chapter 5) and ways we can take action to move from feeling excluded to being included. We see how we go through the Big (homeostatic) Shift, enabling us to have confidence in our lifestyle choices (Chapter 6 and 7). We now have empowering language so that we can conduct life gracefully (Chapter 8). Finally, we expect respect and compassion from others (Chapter 9). Another way to be empowered is to be aware of the laws in our country, such as understanding our rights under the American Disabilities Act, the subject of this chapter. Laws (are supposed to) Mandate Behavior Though this book does not dwell on the legal aspects of celiac disease, it is paramount to understand our rights to force compliance and to unite to expand the law’s definition. Visible disabilities such as impaired mobility or vision are covered under the American Disabilities Act, requiring accessibility in public pathways. Invisible disabilities such as diabetes, multiple sclerosis, lupus, and cystic fibrosis (ADA, 1990) carry the expectation that they will also be accommodated. Similarly, celiac disease and food allergies were added to the American Disabilities Act in 2012 with caveats when college students who felt their needs were not properly addressed, took action. Students with celiac disease and food sensitivities at Lesley University felt excluded and discriminated against because they were not able to fully enjoy the food service accommodations without fear of being cross-contaminated when purchasing the school’s mandatory meal plan. An ensuing lawsuit between Lesley University and the Justice Department determined that Lesley must provide gluten-free foods in its dining halls for students who have celiac disease or food allergies (Justice.gov). Further, celiac disease was deemed a disability under the American Disabilities Act (DOJ, 2012). The settlement also required Lesley to develop individualized meal plans, provide safe zones to prevent cross-contamination, disclose ingredients of foods, and pay $50,000 compensatory damages “to previously identified students who have celiac disease or other food allergies” (DOJ, 2012). Students attending this university now experience inclusiveness because several gluten-free selections are available in dining halls. The meals are prepared in a “clean” allergy-free space in the kitchen. Since the 2012 lawsuit, Lesley University has become a model of celiac disease inclusivity, providing a kitchen free of allergens, offering the foods requested by students, listening to students’ needs, training staff on safe handling, and cross-contamination practices (Schilling, 2015). This landmark case influenced the outcome of a similar suit against Rider University in 2019 where students with similar complaints as those attending Lesley were rewarded with inclusive accommodations on campus (DOJ, 2019). ADA and the School Venue The American Disabilities Act does not detail specific residency standards, however Title II states that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity (ADA, 2012).” This means that if a student attends a school that receives federal funding (and most do), they are entitled to the rights stated in the American Disabilities Act. But because it is vaguely written, some institutions offer gluten-free dorm rooms, while others require celiac disease students to live in an apartment off campus. Sarah (#31) describes how the school’s staff met with her to figure out a solution (Chapter 3). Though intended to protect her from cross-contamination, the ensuing plan caused her to experience a lonely first year in the school venue because she was forbidden from entering dining halls and other food-events such as college pizza parties. She suffered extreme isolation that prevented her from bonding with her fellow students. When universities require students living on campus to purchase a meal plan, it can create a burden for students trying to eat safely. For example, student and celiac disease sufferer Hannah Smith ( Smith v. University of Maryland, 2020) was forced to purchase a meal plan and alleges that her university served her gluten-containing food three times, despite asking whether it was gluten free. On one occasion, a campus staff member “berated Smith and served her blackened toast for making a complaint” (AP, 2/24/20). On another occasion, Smith was assured that a popular breakfast cereal containing wheat was gluten free ( Smith v. University of Maryland, 2020) and then for lunch, served her soup that contained barley. The university refused to refund her for the cost of her meal plan when she moved off campus the next year, so she sued. In the heartbreaking complaint prepared by Smith’s lawyer, it says the honor student after consuming the food, “vomited so intensely that blood vessels throughout her face burst. She experienced brain fog, difficulty walking, uncontrollable vomiting, and rib pain as a result of projectile vomiting. The impact of this incident lasted for weeks.” Over the course of the semester, she developed dermatitis herpetiformis. Further it says, because of these incidents, “she could not maintain her grades due to constant illness” caused from becoming sickened by the gluten-containing foods. Finally, it summarized, “Smith suffered physical, emotional, and financial harm as a result of the Defendant’s conduct” ( Smith v. University of Maryland, 2020). Ultimately, the suit was dropped. The position of the school in this situation enacted the I-know-best, gluten-doubt, and the able-body biases , despite Smith’s father’s attempt to educate and ensure his daughter had safe fare. The kitchen staff did not ever seem to embrace Smith’s serious requirements with their actions of repeatedly exposing her to gluten (while assuring her the foods were safe). This lawsuit very disturbing because the repeated efforts of Smith’s father did not yield success. It implies that we are truly at the mercy of the willingness of those in charge when we are in any kind of institution or situation where we have to rely on others to feed us. Flexible guidelines in the American Disabilities Act allow colleges to work with what they have in order to accommodate student’s needs. Sometimes arrangements instill inclusive behavior, and other times they result in unintended consequences such as isolating a student, or dependence on non-compliant kitchen staff. It comes down to training everyone involved and being dedicated to working together to accomplish the goal of providing a safe meal to the student. When the Lesley case mandated that celiac disease and food allergies were included in the American Disabilities Act, it was hoped that there would be a ripple effect to make it safer for our community to dine in restaurants. Though it has improved some situations, the American Disabilities Act contains exceptions for restaurants. American Disabilities Act and Restaurants Nearly every participant commented on how they were afraid to eat out because of inconsistencies in compliance. Not feeling safe to eat restaurant food was by far the reason many felt isolated and excluded from social gatherings because of their disease. Chapter 9 details strategies for restaurant eating. Here, let’s look at the laws about celiac disease as a disability. The American Disabilities Act falls short when it comes to restaurants, because if a patron’s request “alters the nature of the goods” the restaurant does not need to comply (ADA, 2012). This means the amended American Disabilities Act does not apply in the same way to restaurants as it does to institutions. Assuming you are properly diagnosed, you can demand a gluten-free meal at federally-funded institution but you have fewer legal rights in a restaurant. Restaurants can answer questions about ingredients and omit or substitute according to a patron’s request but they do not need to provide “different foods to meet particular dietary needs” (ADA, 2012). As we have heard from participants, this causes every restaurant experience to be unique, depending on the commitment level and knowledge of the staff. If restaurants do not want to “alter the nature of their goods” to comply with gluten free guidelines, they can refuse to serve those with celiac disease and food sensitivities (U.S. Fed News, 2012). Consequently, this continues to make restaurants a “vexing venue” because they are still not required to offer safe gluten free meals. Some restaurants have conscientious staff, but others do not. Furthermore, a restaurant that is compliant one day may not be the next because standards vary by state, by restaurant, and by servers and chefs. The Gluten Intolerance Group of North America’s Gluten-Free Food Service program provides food service providers with guidelines to be designated as a Gluten Free Safe Spot (gffs.org). This kind of training throughout the restaurant industry would ensure consistency. This website also provides information on restaurants, schools, hospitals and senior facilities who have attained the Gluten Free Safe Spot designation. Trusting the server and the restaurant to comply is often an act of faith. Just as when we travel to another country, we represent all Americans, when we ask for a special meal in a restaurant, we are “representing” all of those who have celiac disease or food sensitivities. When restaurants get it “right,” participants describe how they praise the staff, often calling over the manager to thank them for accommodating our needs. Positively reinforcing good behavior might help the next person who asks for a special meal. But sometimes that backfires. Liza (#68) reported an incident when she asked the waiter for a gluten free, dairy free selection and the waiter said, “Not another special need! You should have heard how the lady at that table over there ordered. She even had a card with all of her requirements on it for me to give to the chef.” The waiter did not provide Liza with a meal she felt safe eating. She did not feel he listened to her needs because the salmon she ordered cooked “dry” came with some kind of brown sauce she was afraid to eat. Participants voiced they are careful not to appear too “demanding.” It is a slippery slope because we have to trust others to believe our needs and if we are “glutened,” we pay the price of being ill. Those with celiac disease who have been sickened from eating in restaurants previously may be less apt to trust establishments that promise gluten free selections. This was the case involving a boy who had celiac disease and who brought his own food on a school field trip to Colonial Williamsburg. He and his 60 classmates were planning to be entertained in the18th century style in a restaurant (Marimow, 2019). When it came time for the meal, the boy was told that the museum restaurant had a “no outside food” policy and said the he would need to eat the food prepared there. The father explained that on other occasions, the boy had been “glutened” in restaurants, which is why he brought his own food. The restaurant stood its ground and the boy and his father ate outside in the rain, away from his classmates. The father sued for discrimination under the American Disabilities Act (Hackman, 2017). The restaurant claimed that they offered the boy a gluten free meal and did not require him to leave, and that consuming “outside food” in their restaurant violated health regulations (AP Press, 5/31/19). A court found that the restaurant had previously made exceptions to the “no outside” rule, and because the child needed a safe meal, bringing his own food was considered “reasonable.” Further, his request “did not alter the nature of the restaurant’s services” (Boyns, 2020). A federal appeals court found in favor of the lad. State health departments often do not allow food brought from home by patrons to be heated up in restaurant kitchens because the restaurant assumes liability if they handle outside food. If you elect to bring your own food to a restaurant, ensure that it does not require special handling and refrain from asking the restaurant staff to handle it. Consider carrying a letter from your doctor stating you require a special diet (Chapter 9). Restaurant policies and state policies on outside food vary. It is a tricky business. While we want to show gratitude for restaurants that are avoiding able-bodied bias by offering gluten free and food sensitive selections, we are also relying on individuals who may not fully understand the plethora of ingredients that indicate gluten. For example, Todd Serlin became sickened from consuming French onion soup at a restaurant at the Grand Canyon in 2019 after being assured several times that it was gluten free (AP Press, 4/2/19) illustrating the I-know-best attitude on the part of the restaurant personnel. Another lawsuit claimed that those with celiac disease experience discrimination when a restaurant charged $1 more for gluten free provisions, and didn’t charge for peanut free or vegan requests (Hackman, 2017). We appreciate restaurant’s efforts, but often when we disclose we have celiac disease, we are sometimes warned not to consume the gluten free foods. For example, several pizza chains offer gluten free crust options, but issue the caveat that even though they take precautions, foods may be cross-contaminated because they do not have a strictly gluten free environment. It comes down to liability. I used to frequent a Mexican restaurant where I could get a salad and a piece of grilled fish. One day, when I ordered my normal fare, the manager came back to my table and presented me with a laminated disclaimer. It said, “We are not liable for your food allergies. If you consent to eat the foods we prepare for you, and you become sickened as a result, we relinquish all liability.” What a way to start a meal! First of all, I was the only one at the table that got the laminated disclaimer, so I felt embarrassed as my companions inquired about it. Also, I really didn’t want to risk eating anything there after they presented me with “legalese” to let them off the hook. I want to be reassured, not disclaimed. When my food came, I didn’t enjoy it. It was my last meal there. Can they just disclaim their liability like that? If the restaurant in the Grand Canyon present Serlin with a similar card, would he have had a claim against them when sickened? According to Craig, restaurants assume liability when consenting to provide a gluten free meal, causing some to take out insurance policies in case of slip-ups (Craig, 2012). Does the disclaimer create a loophole in the law? Restaurants continue to be a challenge for us because there are no standardized guidelines mandated by the government for them to follow. Until the American Disabilities Act removes the caveats, every restaurant outing poses risk for those of us with celiac disease or food sensitivities. Jean’s Story – A Restaurant in Dallas Dear Reader, I wish you could have been there with me to share this delightful meal! About ten years after being diagnosed and completely gluten free, the Lone Star Gluten Intolerance Group of North America asked me to speak at one of their meetings. They were so nice! Kay welcomed me into her home with open arms. I spent the night in her home and the next day she drove me to the venue where the group was meeting to hear my speech. After the speech, several group members took me to eat in a gluten-free restaurant. Everything on the menu was safe to eat. I don’t think that restaurant even used dairy products. I looked at the menu and instead of figuring out how I could get a salad with nothing on it to pick at, I looked at all of the selections with the knowledge that I could actually indulge in the meatloaf with mashed potatoes, the chicken fried steak with okra, or the Rueben sandwich. It was positively heavenly! It reminded me of the early part of my life when eating out was a daily activity. Back then my coworkers and I would plan our elaborate lunch schedule around various restaurant offerings. But after being diagnosed, I only went to restaurants to be sociable, often not even eating the salad, but rather cutting it up and pushing it around my plate. But at this glorious restaurant, I ordered fish and chips with coleslaw and gorged myself on that heavenly food. Oh, the crunchy batter on that light, white fish. Mmmm the crisp French fries and the amazing taste combinations when paired with the catsup and apple cider vinegar. The others around the table were indulging in other oral delights. They explained that this special restaurant was one place where they all felt safe and they ate there every Saturday at lunch. The cleaned plates were cleared and the waitress asked us what we would like for dessert. Dessert! Wow! I only ever have berries nowadays. What a treat! I ordered a lovely lemon cake with lemony icing. It was one of the most wonderful meals I can remember eating. I want to live in a world where I can order from menus like that again! Thank you to the Lone Star Gluten Intolerance Group for giving me such a fond memory, and especially thank you to that restaurant. (Sadly, that fine restaurant is no longer in business.) Let’s work together, so we can all eat in restaurants without worry again! American Disabilities Act and Institutions The inclusion of celiac disease in the American Disabilities Act as a result of the 2012 lawsuit requires institutions like colleges, hospitals, prisons, and universities to comply when meals are prepared “in house.” For institutions, the ruling mandates that those with food allergies, non-celiac gluten sensitivity, and celiac disease can provide grocery lists to food providers who must be trained on safe practices. It mandates that allergen-free meals can be pre-ordered; and that those with celiac disease or food sensitivities will be provided a designated area to eat and to store their food. However, private institutions such as elder care facilities are not required to comply (Chapter 2). Title III of the American Disabilities Act does not allow employers to discriminate against, or not hire, a person with celiac disease if they are otherwise qualified. It requires that employers who offer meals to employees provide gluten free alternatives for those with celiac disease or food sensitivities. It states that emergency services such as safe shelters or institutions such as jails must offer gluten free meals, and it allows a person with celiac disease to bring foods into places serving foods that are not safe. There are several delivery services that cater to various food allergies (Healthline, 2023). The American Disabilities Act does not require hospitals to provide gluten free pharmaceuticals. I had the misfortunate of being involved in a hit-and-run on the highway. I was taken to the hospital in an ambulance and was in considerable pain. My sternum was cracked. The staff at the hospital could not give me pain medication because they could not guarantee me that it was gluten free. It took me an entire miserable day to track down safe medicine (using the Internet and coordinating with my doctor). This was a terrible experience, and one that simply has to change. The celiac.org organization works to present legislation for things like this. The change to the American Disabilities Act to include celiac disease is a positive move, but it needs to be broadened to include all public places, restaurants, pharmaceuticals, etc. modeling how those who are physically disabled are accommodated. Here are some proposed amendments to the American Disabilities Act we could suggest to our Congress representative, which would go a long way toward expanding our accessibility: Restaurants would be required to list the ingredients of every dish, either on the menu, or by request. (That would help those with food sensitivities to determine for themselves what is safe, rather than relying on everyone they ask to know all of the many ingredient names that can mean gluten, dairy, or other allergens.) Restaurants would be required to follow the safe-practices guidelines provided by an organization such as the Gluten Intolerance Group of North America (gluten.org / gffs.org) to eliminate cross-contamination, and to properly train restaurant staff. Furthermore, they would be required to publicly post their safe-practices certification in a place visible to patrons. Restaurants would be required to offer several pre-cooked, frozen meal options prepared in an offsite, gluten free certified “safe” kitchen that would just require heating (in the packaging to prevent cross-contamination). That pre-cooked meal wouldn’t require any alterations or substitutions in the regular fare a restaurant offers, but it would ensure that everyone with celiac disease or food sensitivities would have something they knew they could eat. (This may not be optimal, but at least those with celiac disease would be assured of something to order when they go out.) Pharmaceutical companies would be required to prominently disclose all ingredients on the outside label (in plain English, not in medical terminology) and which known allergens the product contains. Ingredients would be specified in each lot, so rather than saying “starch,” label the exact starch used (corn, potato, wheat, rice, etc.). Food manufacturers would write ingredient labels in plain English. For example, if the ingredient is “maltodextrin,” the label would be required to say whether it was derived from corn, rice, potato starch, or wheat. American Disabilities Act and Other Disabilities The National Institutes of Health estimate that there are approximately 3.2 million visually impaired Americans (NIH, 2018). Americans over the age of 15 in a wheelchair number 3.6 million (U.S. Census, 2012). The American gluten-sensitive population sums 20 million conservatively (Fasano and Catassi, 2012; Fasano et al., 2015), including three million people with celiac disease (Fasano et al., 2003) and three million with non-celiac gluten sensitivity (Uhde et al., 2016). In fact, those suffering with gluten sensitivities outnumber individuals who are visually impaired or in a wheelchair combined; yet, the model used to accommodate the visually and mobility impaired has not been extended to those of us with celiac disease or food sensitivities. If laws were changed to require accessibility to accommodate the needs of those with gluten sensitivities such as amending the American Disabilities Act; similar to the “bubbles” installed at crosswalks across the country for the vision impaired, swimming pool lifts, and ramps in public buildings for individuals in wheelchairs, those with celiac disease would be able to safely navigate aspects of life. Taking Action A peaceful organized effort may bring attention to our need to be accommodated. This starts with unification, via gluten-oriented organizations, social media, or community activities to gain nation-wide awareness. It requires that we use similar language such as the ideologies and cultural constraints defined in this book, uniformity in how we communicate our requests in public places, and advocating education, respect, and compassion in our daily lives. Just as those in wheelchairs can cross streets and access public buildings, it is my hope that this work can influence positive change in the celiac community. Followers of the gluten free diet band together, perpetuating their beliefs that they can cultivate a healthy body and rid themselves from disease through diet. Organizations form to educate and change laws. United, devoted dietary followers create massive awareness. In the same way that other peaceful demonstrations have brought attention to the oppression of others, perhaps a campaign that develops the notion being aware of #glutencentric introduced in the last chapter would bring light to our plight, and possibly affect positive changes. We now have a hashtag to “call out” those in the media who ridicule our disease. Just as we may incorporate the catch phrase such as #glutencentric to signify our gluten free lifestyle, we may also develop a catch phrase to bring attention to celebrities who use gluten as the butt of jokes. How about #glutenbutthead? Perhaps doing this on social media would affect a positive change in the global attitudes. It seems ridiculous that we’d have to do this. People with other diseases don’t have catch phrases to be taken seriously, but it seems we need one since “gluten” mocking is consistent in TV scripts, in newspapers, and a subject for comedians. Next, I want to talk about a final cultural constraint that revealed itself in my study. Even though I gave you a sneak peek in Chapter 8’s summary, I saved this one for this final chapter because it has a happy ending (with some hopeful diagnostic tests on the horizon). Many participants observe that family members have symptoms they associate with celiac disease, and when they encouraged them to seek medical help, they refused. This was described so frequently that I determined there is another cultural constraint prompting this behavior. It’s the yours, not mine stance. Yours, Not Mine Stance We mean well when we suggest it may be gluten causing the problems for our loved ones. After all, celiac disease is a genetic disease, so it makes sense that relatives are tested when a family member is diagnosed. However, there is a phenomenon I have observed from analyzing the interview data when family members resist seeking a medical opinion. Recall the lady I met in the pet shop who described her niece’s diet (Chapter 1). When I asked her if the family was following it, she said, “None of us are going to follow that diet.” Considering that her niece was diagnosed with celiac disease, there is a strong likelihood that someone else in that family had it too – and should be following the diet. But that family elected to make the niece feel like the odd one out. This is an example of the yours, not mine stance where family members treat celiac disease as “your” disease, not “mine.” Some people in my study report cooperative family situations where everyone “embraced” the gluten free diet and worked together to help the member with celiac disease. But many describe how immediate and extended family members treated them like it was something unique to the diagnosed individual—not something they could also have. This caused personal strife, as well as a reluctance to recommend that symptomatic family members get tested. When people first hear of something they fear, one coping mechanism is to protect themselves by separating from and even denying the situation (Manoogian, Harter, & Denham, 2010). It is human nature and a primal survival tactic. Understanding the yours, not mine response as a normal knee-jerk reaction helps us to comprehend why family reacts the way they do when we are trying to be helpful. This poses the question: How do we help our family members who have symptoms we attribute to gluten consumption? The first step is to understand the tendency toward the yours, not mine mentality. William (#30) says, “We can spot them,” referring to how those diagnosed with celiac disease can see the symptoms in other family members. Those of us who live with the disease, and who are well informed about the many manifestations of gluten intolerance “just know” that other family members may be reacting to gluten. We hear our family complain of indications ranging from joint pain, migraines, swelling, brain-fog, gas, bloating, back pain, leg numbness, rosacea on the nose, and gastro-intestinal issues (Fasano & Flaherty, 2014), to name a few. When we mention it might be gluten causing the problems, the response is often, “It can’t be, I’ve eaten it all my life!” When people say that, I want to say, “I rest my case!” It is fascinating how food operates in multiple dimensions of life. In the case of the individual, in the “body battleground,” (Chapter 4) food choices cause harmony for those who are aware of what makes their body thrive, or havoc for those who don’t. Like many interviewed who associate their physical maladies with what they eat, I see it on other people. It presents a constant dilemma for me to decide whether to say something, or to keep my big mouth shut. Usually, I say something and wish afterward that I didn’t. Nobody wants to be told your “truth” even if you’ve spent decades learning it, and suffered for years in the process. Their attitudes, in general are: yours, not mine . We don’t want our boats to be rocked. We want to eat whatever we want, with no consequences. It takes time to come to terms with a restrictive diet. There are actually over 200 symptoms of gluten intolerance (Wangen, 2009, p. 37). For example, Dustin (#46) reports, “My teeth started falling apart. They had cracks and cavities. The dentist said they were ‘demineralizing.’” Vivian (#51) says, “I had low bone density and lots of fillings in my teeth.” Cara (#53) says, “I had a lot of problems with my teeth, brain fog, joint pain, headaches, migraines, kidney problems, skin rashes, and hair loss.” We also know how positively the body responds to a gluten free diet and often want to share our knowledge and secret to thriving health with our family members. What kind of kinfolk would we be if we didn’t? On the other hand, we don’t want to become “that person” who attributes every malady to gluten, though scientific studies exist to support that premise. For example, remember Emery (#45) when she observed symptoms of gout in her uncle and inflammation in her nephews. While at a family dinner, she reminded them “her celiac disease” is a genetic disorder, and was met with the response, “What? Aren’t you just being dramatic? Maybe you are following the diet to get attention (Chapter 5)?” As mentioned before, that illustrates gluten-doubt , but it also shows the yours, not mine mentality found in many families. Other respondents said family members object to eliminating wheat from the diet for religious purposes, citing the Bible sanctifying wheat for human consumption (see Psalms 81:16; Psalms 147:14; Ezekiel 4:9; Joel 2:24). By incorporating the yours, not mine stance family members can erect a shield to protect themselves or loved ones from facing the inconveniences associated with celiac disease. Recall Ava’s (#7) daughter who exhibits symptoms of celiac disease, but refuses to be tested because she (erroneously) believes it “skips a generation” (Chapter 5). This is a convenient yours, not mine adaptation that keeps the mother’s disease compartmentalized as “hers” and not “ours.” However, when family members embrace our disease, we have a better chance of surviving. People suffering heart problems tended to survive longer when spouses referred to the problem as “ours” versus “yours” (Rohrbaugh, et al., 2000, p. 781). People with a disease who live in families who accept the it as “ours” are much more likely to succeed. Successfully “coping with stressful life circumstances is a social process” (Lyons, et al., 1998, p. 582). However, the phenomenon of yours, not mine seems to be an initial response while inclusiveness evolves over time with familial acceptance. With a compassionate understanding that the yours, not mine attitude is often an initial survival tactic, we may eventually be able to gently urge loved ones to get tests that may ultimately save their lives. Let’s be clear: we’re not trying to give medical advice. We are just offering our hard-earned knowledge to urge symptomatic family members go to a bona fide doctor to get tested. Though, as we know, it may send them down a difficult path because as many respondents reported, they were initially misdiagnosed. Hope on the Horizon A study conducted by (Megiorni, et al., 2008) found that 90% of European white patients carry the genetic markers for celiac disease, meaning they may develop it sometime in their lifetime. They also found that females are twice as likely to develop it than males (p. 997). Assuming family members eventually come around, to want to understand the cause of their symptoms, what do we say? We may suggest they go to their doctor for some “tests,” but considering that many doctors are misinformed about celiac disease, they may be sent away with “negative results.” Many doctors still believe celiac disease is rare, but because of the work of luminaries such as Dr. Alessio Fasano, Dr. Peter Green and others, we now know that gluten intolerance is fairly common, and that customary serologic testing may not be conclusive. Therefore, accurate outcomes rely on what doctor is chosen and what tests the doctor chooses to prescribe to obtain a diagnosis. Inconsistencies in the diagnosis process contributes to the yours, not mine effect because family members may undergo what they think is comprehensive testing, but may not have been properly assessed. For those who recognize their symptoms may be associated with gluten and who earnestly want to seek a proper diagnosis, there are several tests that are emerging beyond the endoscopy and serological routines. Stool tests and several home tests available now to test whether you have the genetic (HLA) marker, or if you have the antibodies. This is significant because many who have the traditional “celiac panel” blood tests, test negative for the disease (Celiac.org), possibly because the disease has not progressed enough to appear as antibodies in the blood. Other tests are now available for early detection such as a fingertip blood test has been developed to screen first-degree relatives for celiac disease as a first pass (Popp, et al., 2013). It tests for IgA class and EMA antibodies. An HLA-DQ gene marker test (a cheek swab) can determine with 90% accuracy whether someone has a pre-disposition to develop celiac disease (Tollefsen, et al., 2006). Our community had high hopes for the drug called larazotide (also known as INN-202 and AT-1001) studied on those with celiac disease (CDF, 2019). However, the trials ended in Phase 3 (9 Meters, 2022; CDF, 2019). Another treatment researched uses bifidobacterium probiotics to assist the body to “break down gluten and potentially tame the body’s immune system” (Klemenak, 2015). Between new diagnostic procedures and pharmaceutical developments, there is hope! These early testing methods are exciting developments for family members who may have tested negative to customary tests, but who still exhibit symptoms. Medical diagnostic inconsistencies contribute to the yours, not mine and gluten-doubt attitudes. If we felt our family members were correctly tested, we would be more at ease with a negative diagnosis, but unfortunately because of testing inconsistencies, there is often doubt about whether a family member was properly tested, even after seeking medical input. Summary The purpose of this work is to validate the voices of people living with celiac disease and non-celiac gluten sensitivity to create an awareness of the cultural constraints that influence thinking about gluten sensitivities. Additional outcomes include offering best practices to enhance social interactions for this community and broadening the current definition of celiac disease accessibility in the American Disabilities Act. Scholars have considered the cultural aspects of food and studied the effect of hidden disabilities on quality of life. However, few have synthesized the impact of living with food allergies on cultural and social aspects of everyday life. The degree of ease with which those diagnosed with celiac disease navigate life seems dependent on how reactive their bodies are. Those who are asymptomatic can blend into the crowd, take a few risks and eat gluten free meals at restaurants. Contrastingly, those who are highly sensitive often do not go out at all, and if they do, they bring their own food, or ask a lot of questions before consuming foods. In the other venues, we see similar attitudes where long-held “truths” remain intransigent. Our new awareness of the cultural constraints presented in this book, along with the venues where these attitudes are constantly challenged empowers us. Now we have language and tools in our lexicon to broach a discussion to bring about a different awareness. Even if we don’t have a conversation, it helps us to have a way of thinking about it so we don’t feel victimized, isolated, or at the mercy of others to ensure our health and safety. Moving forward, our newfound knowledge, willingness to advocate our needs, and determination can positively transform our lives. Jean’s Redemption After I was diagnosed and began to research celiac disease, I realized that the constant stomachache that made me fear pregnancy and that my previous abnormal pregnancies were likely caused from the undiagnosed disease. Just as inappropriate food choices may have contributed to my father’s early death, consuming gluten all those years before being diagnosed cost my husband and myself a family. In parts of Europe, children are assessed for celiac disease between the ages two and four years old (Popp, A., & Maki, M., 2019). Here in the USA, we’re lucky to be diagnosed by middle age, and often misdiagnosed prior to an accurate diagnosis. If I had been diagnosed when I was younger, I would have been rid of the symptoms, free of pain, and probably had a body that could have endured a pregnancy. Life may have turned out completely different for my husband and me. But my story is one of redemption and transformation. By eliminating the foods that are poison to my body, I thrive and remain grateful for what I have, living an alternative path. It led me to start a company called Alternative Cook, LLC (alternativecook.com), to produce instructional video streams, cookbooks, courses, and consulting. Through all this, I realized that celiac disease is a social issue. My passion for this cause led me to pursue a PhD and carry out the study and write this book. It is my sincere hope that I can have a positive influence on those who live with this disease. Discussion Questions: What amendments would you propose to the American Disabilities Act to enhance our restaurant experience? How can we unite to change the American Disabilities Act to ensure we can go out to eat safely in any restaurant we desire to patronize? What examples can you provide of the yours, not mine stance? References in Chapter 10 9Meters. (2022). 9Meters discontinues phase 3 clinical trial for potential celiac disease drug larazotide. Retrieved 7/1/22 from https://celiac.org/about-the-foundation/featured-news/2022/06/9-meters-discontinues-phase-3-clinical-trial-for-potential-celiac-disease-drug-larazotide/ American Disabilities Act Title III Assistance Manual. Retrieved from https://www.ada.gov/taman3.htm American Disabilities Act. (1990). Retrieved from https://www.ada.gov/ American Disabilities Act. (2012). Questions and answers about the Lesley University agreement and potential implications for individuals with food allergies. Department of Justice. Retrieved from https://www.ada.gov/q&a_lesley_university.htm AP Press. (5/31/19). Court: Lawsuit over boy's gluten-free meal can proceed; Court: Lawsuit over boy's gluten-free meal can proceed. Canadian Press. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5W7N-CMW1-DY9S-T3Y3-00000-00&context=1516831. AP Press. (April 2, 2019 Tuesday). Man sickened after eating gluten at Grand Canyon hotel sues; Man sickened after eating gluten at Grand Canyon hotel sues. Canadian Press. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5VT4-C2S1-DY9S-T1HK-00000-00&context=1516831. Boyns, S. (January 10, 2020 Friday). Workplace Law; Is gluten sensitivity considered a disability? Monterey County Herald (California). Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5XY7-DF61-JBCN-43VV-00000-00&context=1516831 Celiac Disease Foundation. Retrieved from https://celiac.org/ Celiac Disease Foundation. (2019). First patient dosed in first ever phase 3 clinical trial for celiac disease. Retrieved from https://celiac.org/about-the-foundation/featured-news/2019/08/first-patient-dosed-in-first-ever-phase-3-clinical-trial-for-celiac-disease/ Craig, B. (September 18, 2012). Protect yourself as well as your customers; Companies that offer restaurant liability insurance have begun expanding policies to cover claims related to gluten reactions as well as food poisoning and allergic reactions.. QSRweb. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:57VC-9X01-DXN1-20Y3-00000-00&context=1516831. DOJ. (2012). Justice department and Lesley University sign agreement to ensure meal plan is inclusive of students with celiac disease and food allergies. Retrieved November 18, 2018 from https://www.justice.gov/opa/pr/justice-department-and-lesley-university-sign-agreement-ensure-meal-plan-inclusive-students DOJ. (2019). U.S. attorney’s office reaches agreement with Rider University to resolve allegations under the American with Disabilities Act. Retrieved from https://www.justice.gov/usao-nj/pr/us-attorney-s-office-reaches-agreement-rider-university-resolve-allegations-under Duane, J. 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Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:57B4-BC11-F12F-F356-00000-00&context=1516831. Uhde, M., Ajamian, M., Caio. G., DeGiorgio, R., Indart, A., Green, P., Verna, E. Volta, U., & Alaedini, A. (2016). Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease. Gut, 65 , 1930-1937. doi: 10.1136/gutjrl-2016-211964 van Berge-Henegouwen & Mulder (1993). Pioneer in the gluten free diet: Willem-Karel Dicke 1905-1962, over 50 years of gluten free diet. Gut, 34, 1473-1475. doi: 10.1136/gut.34/11/1473 Wangen, S. (2009). Healthier without wheat . Seattle, WA: Innate Health Publishing. Copyright © 2021 by Alternative Cook, LLC All rights reserved. Published in the United States by Alternative Cook, LLC LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION Data Names: Duane, Jean Elizabeth, PhD, Author. Title: Gluten-Centric Culture, A Commensality Conundrum Description: Centennial, CO: Alternative Cook, LLC, 2021 Identifiers: ISBN 978-0-9787109-2-7 (hardcover) ISBN 978-0-9787109-3-4 (ebook) Subjects: Social Science, Food Sensitivities, Communication Studies, Celiac Disease Alternativecook.com Dedication This book is dedicated first to my husband, Mark my champion in life. Thank you for giving me so many enriching experiences. Second, I dedicate this book to the survey respondents and interview participants. Thank you for providing courageous examples of life with celiac disease and food sensitivities. Your interviews made me feel less alone, and gave me the confidence to forge ahead with this book. I think of you often and am so grateful that we can unite as a community. It is my sincere hope that this book can break down some of the social hurdles by bringing light to them. Creating awareness and having language to describe it are the first steps to making a positive change. Acknowledgements I’d like to take a moment to thank Heather, my editor for being my muse and for helping me to find and express my “voice” throughout. Thank you for your incredible patience as I learned the art of writing. I have loved our sessions and your insight! Thank you to Scott Adams at celiac.com for allowing me to post the survey, and to write about social scenarios these past few years. Thank you to my sister, Becky for your friendship and support. Thank you to my friends, Wendy, Marcia, Lori, Laura, Barbara, Jana, Kelley, Doreen, Sandy, the Literari Sisters, and my philanthropic Sisters who have given me support throughout. Thank you to my doctoral committee, Christina, Kate, Beth, and Nicole. I love you all, and thank you for your kind, loving understanding as I struggled with the disease to navigate life. Back to: Gluten-Centric Culture: Chapter 9 - Travel Tips Restaurant Primer
  5. Celiac.com 04/04/2023 - Throughout this book (published one chapter per quarter on Celiac.com), we’ve discovered gluten centric practices in various vexing venues that constrain the lives of those dealing with gluten sensitivity. (For your convenience, here are links to previous chapters 1, 2, 3, 4, 5, 6, 7, 8.) In this chapter, we’ll discuss tactics gleaned from those interviewed, as well as an extensive restaurant primer featuring Chef Daniel Carpenter. As we’ve seen in so many illustrations in the book, having a strategy, language, and even a catch phrase (#glutencentric) empowers us to gracefully negotiate our gluten-free lives. Best Places to Travel When talking to my respondents, I asked them to tell me about their gluten free lifestyle when traveling. Stella (#21), for example, reports that her experience on Royal Caribbean cruise was successful; that the chefs are trained by the Culinary Institute of America, and know about cross-contamination. She felt safe eating the food they prepared. Lilly (#59) said the people at Disney were very accommodating. Vivian (#51) filled her suitcase before packing off to Ireland – just in case. While there, she discovered that Ireland is heaven for those with celiac disease. She noted, “The Catholic Church in Ireland has a separate line for the gluten free host!” Piper (#43) says, “In Italy, everybody knows what celiac disease is. Everyone is tested in elementary school.” It is reassuring to learn there are entire countries where we are safe to eat with celiac disease. On the other hand, Asian countries aren’t as safe. Lillian (#58) traveled to Thailand, Cambodia, and Burma on a guided tour. She handed the tour guide a card she brought with her explaining her food allergies. Unfortunately, he had “no clue about food allergies, didn’t know how to read the card, or what the ingredients were.” She notes further, “In Thailand, [wheat containing] soy sauce is in everything.” When attempting to go on a guided all-inclusive trip to Japan, Liza (#68) reports the tour company told her she could not go because it was impossible to ensure the foods would be gluten free. When traveling anywhere, some participants report they freeze food to take on the airplane and then put it in the hotel refrigerator upon arrival. Others use Teflon bags to heat food in toaster ovens. However, when traveling to Asia, meats and many other foods are prohibited upon entry and all food must be declared at customs. Many I interviewed said they simply quit traveling because it was just too risky to rely on other people to prepare every meal. It’s Better Than Staying Home This excerpt from Gluten Centric Culture first appeared in the Journal of Gluten Sensitivity Autumn, 2019 Before I was diagnosed, my husband and I traveled quite a bit. After being diagnosed and becoming more sensitive to gluten over time, I traveled less and less, and only to places I knew. But that changed when my husband gave me an “adventure-island hopping tour” to Greece for a graduation present that included two dedicated guides, all meals, and multiple adventures a day with a group of thirteen others. To prepare, we increased our workouts and added regular six-mile walks. We were excited to see Greece in this way! The tour company sent me a form, asking me to disclose food allergies. I investigated common Greek foods to see what they ate and how foods were prepared to get an idea of what might be safe for me to consume. I also watched videos on how foods are prepared and saw that a frequent practice is to grill meats and bread on the same grill. That was worrisome. Rather than bogging them with a list of what I cannot eat, I said that I was allergic to dairy and gluten and the best foods for me to eat were steamed poultry or fish, steamed vegetables, and fruit such as oranges or bananas. Steaming seemed to be the safest suggested cooking method. In interviews for my study, I had learned that Greece was on the top of the list of countries that people reported was the most challenging, so I was a little concerned about going. But I resolved that I wouldn’t let celiac disease force me to stay at home. I want to experience life! So, whenever I travel, I always carry a 3 oz. pouch of tuna, a Lara bar, and a sealed package of walnuts. (Note: these foods get through TSA in my carry-on every time!) It is amazing how many times that little meal has saved the day. I feel confident knowing I always have food with me. So even though I anticipated finding safe foods in Greece, I packed energy bars, pre-packaged walnuts and almonds, pouches of tuna, dehydrated vegetables, and jerky (easy to reconstitute into soup), just in case. I even brought my favorite chocolate. The welcome meal was abundant with lovely Greek foods served family style and I realized that nothing on the table was safe for me. Nearly every dish contained gluten, and I feared the salads were prepared on surfaces also used to slice bread. Foods that didn’t contain gluten, contained dairy. Feta cheese, Parmesan, and yogurt were abundant at every meal. A plate of chicken was presented near my plate, apparently for me, but it had cheese on it. I passed it down to the others at the table. Even though I filled out that travel form disclosing my allergies, there was nothing for me to eat at that meal. I have a great appreciation for the “art” of cooking, for flavor-pairing, for attaining the right mouth feel, and balance of flavors. The Greeks do too. In fact, the word epicurean (pleasure of food and drink) originated in Greece in the 15th century. In Greece, typical evening meals start at 9:00 PM and end around 2:00 AM, served with weak wine so people can eat, drink, and chat throughout the evening. Meals are a social event enjoyed regularly by immediate and extended family and friends. At our meals, every dish was paired with lovely sauces or accompaniments to enhance the flavors and texture. Our guide carefully explained how to eat each dish, whether to stir in the cheese or sauce, or to eat it on the side, what to dip where, and what to pair with what. Wines were selected based on the entrée. The culinary skills demonstrated in the dishes were superior. Food in Greece is revered and celebrated. While my companions were exuberantly eating, I sat hungry, remembering a time before diagnosis when I went through a “Greek Food” phase. I reminisced on the lovely taste combinations of Greek foods. As a guest in their country, the last thing I wanted to do was to suggest alterations in the way they prepared these beautifully balanced meals to accommodate my strict dietary requirements. I didn’t want to insult their “art.” I also didn’t want to come off as a demanding person requiring them to change century-old practices for my needs. Finally, I didn’t want to make a spectacle of myself in the group I’d be spending the next ten days with. I didn’t want to be that needy person. I sat hungry, while my fellow travelers raved about the flavors. I wanted to sneak-eat the pre-packaged walnuts from my purse, but I couldn’t discretely get the darn bag to open. Lunch the next day featured a similar array. This time, I pre-opened my walnuts and brought a banana. Tour participants noticed and passed various dishes to me. I told them I have food allergies and wanted to stay “safe.” The tour guides also noticed and asked me what I could eat, saying they would order anything I wanted. I said I was fine, that I wasn’t feeling that great and that the banana and walnuts were adequate. I really didn’t feel like exerting my needs and risking insulting anyone. After lunch, the two guides met with me privately and said, “You paid for food on this trip and we want to accommodate your needs. Please tell us how to do that.” I told them I’d think about it and get back to them. I felt overwhelmed with desperation and a little depressed. I was catching a cold from a direct-hit sneeze at the Parthenon, had a low-grade fever, and felt pretty bummed that I may be eating the foods I packed three times a day. The food in my backpack was intended for emergencies, not for every meal. My resolution to lead a normal life was evaporating, too. I was beginning to wonder if going on this trip was a big mistake, and thinking maybe it would be better if I had stayed home. Feelings of “food insecurity” set in, despite my suitcase of food. It was definitely the low-point of the trip, likely magnified by the fever. To trust people you do not know, whose language you do not speak, who have never heard of celiac disease (and once they have, think it is shocking that anyone can be that sensitive) daunted me. And because we’d be travelling to different places every day, I’d have to trust different cooks to judge my needs as credible. The thought of this, especially when witnessing how much gluten was present in every dish, caused me to have a great deal of anxiety about becoming cross-contaminated, no matter what I ordered. I’ve worked in big kitchens with multiple cooks, and know that getting meals on the table requires “rote cooking” skills, often in a frenzy during peak times. Disrupting that assembly-line rhythm when trying to serve a lot of people causes problems. Old habits kick in, and cooks forget about the special requirements in their haste. Food is “glutened” without a thought because that is the way it is always prepared. It is not necessarily a reflection on the cook—they are simply doing what they do to get hot, tasty food on the table. Knowing this, I’d rather go hungry. Cross-contamination in one meal by just a speck of gluten could ruin my trip and make me miserable for weeks. It was a real dilemma. For years after being diagnosed, my husband and I didn’t attempt group-trips that required others to prepare my meals. Rather, we’d stick to American cities and finally branched out to Europe once or twice, finding grocery stores to purchase suitable foods. We had lovely picnics in scenic places. Occasionally in restaurants, I would present my “dietary restrictions card” in the language of the country, and to my relief, usually received safe meals. But something about Greece was different. In most countries in Europe, gluten intolerance is well known. Here, it seemed obscure. In fact, I learned that the Celiac Society (a celiac disease awareness and advocacy group) only had a presence in Greece for one year. As a result, celiac disease is virtually “unknown” in Greece. I thought about the “raw ingredients” contained in the two meals we’d had so far, and determined that zucchini, green beans, potatoes, carrots, chicken, or fish were regular fare. Thinking most restaurants would have those foods I met with the two guides and gave them the card I brought with me explaining my dietary issues and what an ideal meal would be. Though their English was exceptional, I gave them the card in both English and Greek. They asked me what I would ideally like, and I said, “Let’s keep it simple. I’m happy to eat the same foods for lunch and dinner … so a steamed piece of fish or chicken with some zucchini, potato, and a carrot would be fine.” They said, “None of the restaurants have steamers. How about if we ask them to use a clean pan that has been washed free of grains to boil your meals?” I said, “That is a great idea! I would feel comfortable with that.” Over the course of the week, they called each restaurant in advance of our arrival, and I was presented with lovely plates of these foods. The guides had to explain these “safe practices” to each of the restaurants—a new concept for most of them (though one cook had a sister with celiac disease and understood completely). Many of the cooks wanted to add things to make it taste better, and the guide explained, “No, this is all she can have.” Sometimes, the restaurants didn’t have the foods I requested and the guide went to a grocery store and brought it to the chef. He was very discrete about this and no one on our tour knew he did it. I was deeply touched by his kindness. One time, the guide actually cooked my meal for me! Several of the chefs objected to boiling fish, while others, since they were given a few days notice, sourced a type that could be boiled. I would have suggested grilling it on a “clean” grill using olive oil, but in the interest of keeping it as simple as possible, I stuck with “boiled.” Simplicity seemed the best tactic. And since it was so different from how the chefs typically cooked, I felt safe that old habits wouldn’t kick in to cross-contaminate the foods. Others on the trip were very cooperative, no longer strangers, but fun travel companions who kept bread crumbs from flying on my plate when we were eating a picnic on a windy day, and who were careful to keep the bread basket away from my plate while sitting at the table. I sat on the end of the table to dodge crumbs, and to have access to the waiter if I needed to – though I didn’t – the guides did all of the interfacing for me. When everyone else stopped for a gelato, the guide handed me a banana or an orange. My gratitude for the meals they prepared for me influenced the way the others viewed my meals – with appreciation that the guides and restaurants were so accommodating and cooperative. The experience forced me to come to terms with my insecurities about speaking up, my food anxiety, and the reality of my limited diet. I learned a few lessons too. For someone as outspoken about celiac disease, sometimes my own timidity surprises me. I realized that I had allowed myself to fall into the absence of agency ideology by being shy about asserting my needs. As a foreign traveler, I didn’t want to be a bother or make the entire trip focused on my food requirements. An extensive study conducted on adults with celiac disease (Peniamina, Bremmer, Conner, & Mirosa, 2014) found “the main qualities seen as important for coping with allergen-free eating were assertiveness and organizational skills” (p. 943). Assertiveness, they found, is paramount to ensure the person with allergies conveys his or her needs to avoid risk-taking behaviors. I admit that I did not initially assert myself, and it was only because of the guide’s insistence that I was given suitable meals. However, eating is a fact of life, and it comes up at least three times a day, so it has to be dealt with. Assertiveness means being confident enough with yourself to ask for your special needs to be met, or to bring foods for yourself and eat them openly. It doesn’t mean being demanding or rude. It means simply stating the facts and asking for cooperation. Assertiveness would have meant that I initiated that private conversation with the guides, rather than the other way around. Both guides said I was too polite, and that they wanted to help me. They said if I had been demanding, they still would have helped me, but reluctantly. I really didn’t want to be a problem, but in the end, I did have to eat. It feels like walking a tightrope to find that happy medium to be assertive, firm, friendly and respectful, all at the same time. It is a social skill worth practicing. Even though they accommodated my needs, the meals required supplementation. I was glad I had high-fat bars and nuts with me. Several things contributed to my successful trip. I came home un-contaminated, and didn’t lose much weight! (By contrast, my fellow travelers complained about gaining weight because the food was so fantastic, and isn’t that a sign of a great trip!) I ate my bars and nuts for breakfast. I wouldn’t have come up with the idea of a “boiled meal” on my own, but I worked with the others to find a solution. The guides, who had never heard of celiac disease before, did some research between day one and our meeting. They learned from reading the Internet about safe practices. I am grateful they proposed the “boiled meal” idea. The guides’ cooperation was key to a successful, pleasant trip. The guides also coached me on what would have been a better way to write my card. Based on their suggestions, here is what it now says: I have celiac disease and am allergic to gluten (wheat, barley, rye, spelt, oats); dairy (cheese, milk, butter, yogurt); coconut, palm, and pine. Would it be possible for me to please have fish or chicken boiled or steamed with vegetables (with no added sauces or condiments) served with potato, beet, turnip, or rice? It is essential that foods prepared for me have not come into contact with gluten-containing grains or dairy. Please boil, pan fry (with olive oil), or steam my food in a pan that has been thoroughly cleaned from any residual grain. Thank you. Was it better than staying home? YES! I was really proud of myself for having the courage to travel again. My planning coupled with the compassion of the guides provided me with the trip of a lifetime. The Letter In addition to a card to hand a food server, it is a great idea to get a letter from your doctor on official letterhead that says you have celiac disease or gluten intolerance, and that you must follow a strict gluten free diet. You never know where you might end up while travelling. For example, if you were checked into a hospital, the medical letter would instruct the staff what to feed you. It is important to ask your doctor to write what you can eat, rather than listing all the foods you cannot eat. For example, you might ask the doctor to write that you should stick to a diet comprised of lean meats, steamed or lightly stir-fried vegetables, fruits, nuts, etc. This way, when taking it to a kitchen, the staff knows what to make for you. I keep a digitized copy of my letter in my purse on a USB drive, and have a printed copy with me whenever I travel. It has also helped me keep food that would have otherwise been tossed as I go through security in airports. RESTAURANT PRIMER After explaining her gluten free needs, Ruth (#69) describes how her companion mocked her in front of the server and said, “Give me all of her gluten! Make mine ‘normal’” he said, thereby undermining Ruth’s needs and making her order seem “abnormal.” Should Ruth point this out to her friend? If it is a close friend (or spouse), it might make sense to discuss how his comment undermines the severity of her needs. He may not realize that his joke is having a negative effect. In fact, these scenarios happen frequently when we go out to eat which is what prompted this Restaurant Primer gleaned from the wealth of information shared by study participants. In order to understand the restaurant’s perspective, this section includes insight from a prominent Chef, Daniel Carpenter. We discussed day-to-day restaurant experiences of interviewees at length in Chapter 5. This section takes us from the “front of the house” where we sit and eat, to the “back of the house” where food is prepared. Every step of the way is fraught with the possibility of errors being made. The following will attempt to provide some guidelines so we feel like we can go out to eat. Nearly everyone I interviewed said that eating in restaurants was their number one issue. Many simply do not feel safe because of worries about food being cross-contaminated in the kitchen. We also dread having a confused or dis-compassionate server. We have every reason to be concerned. A recent study shows that one-third of foods labeled gluten free in restaurants actually contain gluten (Lerner, et al., 2018). This eighteen-month study asked 804 people to carry a portable Nima gluten detection device in various restaurants across the U.S. Five thousand six hundred twenty-four items were tested and 32% of the foods that were labeled gluten free, contained gluten (Lerner et al., 2018). This is likely because of cross-contaminating practices and because so many foods contain hidden gluten with confusing names. It takes a certain amount of expertise to read labels accurately, and unfortunately many restaurant workers lack this skill. Ordering Strategies Not quite as bad as Ruth described above, but never the less, a challenge—here’s a scenario that happens when I dine out with a friend. If I order the salad with no dressing, no cheese, no tortilla strips, and a piece of dry-grilled fish on the top. Inevitably, my companion orders that same salad, but makes different changes to the order. That shows comradery – eating the same foods is a subtle gesture of “togetherness.” But it usually results that I get some unusual combination of the two orders, with toppings I am allergic to. This has happened enough times that I have specific restaurant strategies. First of all, I try to order last. If the server starts with me, I now say, “Oh, I need another minute…” That way, the server takes everybody else’s orders first. Second, I arrange it so I am sitting on the end seat at the booth, or if at a table, I ask the wait staff person to come over to where I am so I’m not announcing my dietary requirements across the table. Third, I order discretely, so nobody gets the idea to change their order to what I am ordering, thereby causing the same confusion as mentioned above. Using this new strategy, more often, I get a meal I can eat. Let’s hear now from Chef Daniel Carpenter on “front and back of the house strategies.” Figure 9.1 [Licensed with permission from Cartoon Collections.] Front of the House – To Restaurant Patrons For this section, I interviewed Chef Daniel Carpenter from Crooked Tree Culinary who develops restaurant best practices for “back of house” (the kitchen). Insight to how restaurant workers fulfill the needs of the food sensitive helps us to communicate better to each other. Harmonious interaction with front of house workers (the serving staff) often determines success with the back of house fulfillment. Carpenter says, “I’ve been thinking more about the question of how diners can best present their needs at the point of ordering and it feels as though your message might center both on vocabulary and on self-advocacy. If a diner is fortunate enough to be speaking to a manager (or a seasoned server), the need for self-advocacy should be lower, because they will be interacting with a professional who understands how high the stakes are.” How do we ensure we have self-advocacy? Several suggestions come directly from participants in the study. For example, Hazel (#22) recommends using an app to find “safe” restaurants. She reads the comments of others before deciding which restaurant to choose. After a meal, she also provides feedback for others on the app. Just search for “GF apps.” Also, the Gluten Intolerance Group of North America has certified some restaurants, and a list of those establishments can be found at (gfco.org). Other participants suggest calling the restaurant in advance and speaking directly to the chef to work out the best thing to order. Many said they deliberately go to the restaurant during off-hours so their needs can be tended to with un-hurried staff. When eating outside of our home, we are empowering many who do not understand the severity of our disease to cook for us. Consider how much time and effort it has taken for us to fully understand the nuances of the disease and the foods that trigger reactions. For many, the list of foods we avoid expands the older we get and longer we live with celiac disease. We can’t reasonably expect a cook in a kitchen who is focusing on getting hot plates of different foods served to worry about the extensive list of foods we cannot eat. They would have to understand all of our allergies, read every label of everything they use, and know what the obscure words mean. Most people simply can’t do that. And consider the foods mentioned in Chapter 8 describing the able-body bias that have hidden gluten such as grocery store rotisserie chickens – it’s complicated! The best advice when ordering is to stick to naturally gluten-free foods like salad, vegetables, fruit, and unprocessed meat. Participants also said they always brought their own tamari or gluten free soy sauce so they knew they had a condiment they liked if ordering steamed rice and vegetables. When ordering, speak “restaurant talk.” Order something grilled “dry” if you do not want oil. If ordering from a menu, tell the server what you do not want. For example, if the salad’s description says it comes with shredded cheese and croutons, say you do not want the cheese and croutons. In fine restaurants, take a look at the menu to see what meats/proteins and what vegetables are offered. Then close the menu and after explaining what allergies you have, order the meat “dry” and the vegetable “steamed.” Carpenter suggests, “I would recommend including (in a firm but non-confrontational way) how the possible outcome of a failure could look.” You might say, “I have Celiac disease and if I consume gluten, I will become very ill.” Further he recommends not using the term “sensitivity” but rather say “allergy” or even “extreme food allergy.” “Leaving any gray area is a recipe for heartache.” Be very specific and practice what you’ll say beforehand. You might decide to say, “I have an allergy to gluten, (a protein found in barley, rye, oats, wheat, and spelt) and I need to be assured that my food doesn’t contain it.” I don’t advocate leaving the table and seeking out the server for a tête-a-tête because that might disrupt the flow of how the server takes orders. Carpenter says, “The case where problems might arise is where [restaurant] guests are dealing with a junior server or one who does not, or does not care to, understand the importance of respecting the guests' needs.” It’s a good idea to “test” servers before ordering a meal, just to see if they are listening. For example, order club soda with lemon before ordering food. If the server has listened and brings lemon (rather than the usual lime garnish with club soda), you feel more confident that they might get your dinner order right. If they don’t bring it with lemon, you know this server is not concerned about special requests. In this case, it makes sense to ask to speak directly with the chef or to the manager when ordering your meal. This is a delicate issue because you rely on the server to bring something safe for you to eat, and the last thing you want to do is to make them angry. Carpenter says, “Unfortunately, many servers do not have a solid relationship with the kitchen or simply are afraid to place modifiers on tickets because cooks often respond with hostility to any changes, especially during busy times. Here is where the self-advocacy comes in; guests (even though it might feel ungraceful) need to escalate to a manager any time there’s even the hint that they are not being heard.” Knowing this, you might say, “My needs are complicated. I’m really sorry, but I wonder if it might make sense for me to speak directly with the chef?” Even if you don’t end up talking with the chef, you’ve still made your point. When servers and staff try to accommodate your needs, thank them for taking care of you and speak to the manager to thank them for working with people with special needs. It is important to positively reinforce everyone involved. Back of House – To Restauranteers Carpenter has worked with many restaurants to ensure special orders are fulfilled properly. He says: The model I recommend creates a separate pathway in the point-of-sale ordering system whereby tickets that address specific dietary needs are printed on their own color or type of paper [and potentially sent to printers on portions of the line where specific food types are (or are not) prepared]. Of course, none of this means anything unless the server and manager are proactive in receiving and confirming with the guest exactly what needs must be met. That language will vary depending on the type and style of restaurant concept: a fast casual outlet that serves no shellfish will approach the scripting of that conversation differently from how a full-service fine dining restaurant will. Once the order has been taken and verified with the guest - ideally by the front-of-house manager-on-duty - and the ticket has been sent to the kitchen, I recommend mandating direct verbal confirmation between the front-of-house / manager-on-duty and the back-of-house manager on duty/chef. In my experience, most breakdowns occur when both the dining room and kitchen are very busy. The team is skimming the surface of orders/tickets [not reading them closely]. [Busy] times during most shifts [are] when the team switches into auto-pilot and sometimes makes both major and minor mistakes. Escalating every order containing special dietary needs to the shift leads, in their respective sectors of the operation, provides an invaluable double-safe. The final step is for the front-of-house / manager-on-duty to run the plate personally and to repeat the special need that has been met in the preparation of the dish. Many operators will resist the notion that the operation needs to come to a screeching halt and that a conversation between front-of-house and back-of-house has to happen, but the stakes here are so high that I insist on that exact sequence of events, even if it’s multiple times/evening and during rush periods. Operators who have experienced the pain of an order slipping through the cracks know just how much effort prevention is worth; those who have yet to experience that unfortunate event often fail to understand that it’s not a matter of if but one of when it will happen to them if they do not take proper measures. As we know, training and consistency are keys in every aspect of foodservice. Repetition in pre-shift meetings/ongoing training and in new hire seminars is critical to success, especially when it comes to the health and welfare of guests who have dietary needs to be met. Perhaps this information will help restaurants to develop best practices in their kitchens. What diet is right for us? What should we even ask for when ordering in a restaurant, to ensure our safety? Some said they chose to follow diets that completely eliminate bread such as the Paleo diet where one eats meats, above ground vegetables, nuts, and fruit. Many participants told me they were initially diagnosed with irritable bowel syndrome (IBS) and followed the Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols (FODMAP) diet plan, which are names for certain types of carbohydrates that ferment in the body and cause digestive disorders (Nanayakkara, et al., 2016). Avoiding foods with this type of carbohydrate eases these troubles. Lists vary, but according to Nanayakkara, fruits such as bananas, and blueberries are low while apples, pears, and cherries are high. Vegetables such as zucchini, carrots, and green beans are low, while snap peas, mushrooms, and asparagus are high. Grains such as brown rice and gluten free grains are low, while gluten-containing grains are high. Nuts are preferable to beans and alternatives are suggested for dairy. If you are still plagued with gas, constipation, bloating, vomiting, or diarrhea and you are following a gluten free diet, ask your doctor if you should consider the FODMAPs plan. Like everything, it takes trial and diligence to understand what works for you. Fixed Menu Formal Dinners If forced into a situation where there is no other alternative other than to sit with a plate of food in front of you that you cannot eat, such as at a banquet or a wedding where no provisions were made for your special needs, an alternative is to “fake eat.” I hate to admit this, and I think wasting food is terrible, but some social norms make it necessary to “pretend eat.” The “look like you are eating” tactic is well-known to anorexics – where you cut up food and hold it on the fork while talking, put it back and pick up another morsel and cut it up into little bits, and make a small pile. I learned about this technique in an Abnormal Psychology book in the discussion on anorexics and thought, this would be useful for those occasions that I cannot control. The food never enters my mouth. I’d rather go hungry than to take a chance on eating foods with ingredients I don’t know, and getting a reaction, and I also don’t want to offend anybody by rejecting the offered food. I use this technique sparingly, and less since I’ve become empowered after my Big Shift, but it is in my arsenal if I’m in a public “vexing venue” because it affords me agency to protect myself in an otherwise dangerous situation. My husband has my back at organized meals where provisions for my needs are not met. We have a system we call “plate and switch.” If I am with my husband at a business meal, I can usually do the plate and switch maneuver sometime during the meal. Here’s how it works: I sit next to my husband and start off with the “look like you’re eating” tactic. When my co-conspirator has eaten most of his meal, we switch plates. You’d be surprised at how easily this can be done and go unnoticed. Then, I can put my silverware on the plate in the “I am finished” position (and hope that the waiter has read the same etiquette book as I have) and my husband can finish eating my meal. He loves it – he gets two meals, and I love it because it looks like I’ve eaten like everybody else. Gluten Detection Kits There are several gluten-detection kits on the market designed to test foods on-the-spot. These can really ease the worry and some of the participants advised using them before consuming restaurant foods. These tests might be acceptable when dining with family and close friends, but it could also become a conversation diverter as dining companions inquire about it. Results occur after approximately three to ten minutes (depending on the test) and food can become cold during the testing process. Even though the dinner table isn’t the ideal testing location, these tests are invaluable to isolate hidden gluten in foods, pharmaceuticals, or cosmetics you use at home. This chapter has provided a smattering of survival strategies for travelling and eating in restaurants gleaned from the many interviews, and my nearly twenty years of living this lifestyle. The next chapter takes a look at the legal protections offered by the American Disabilities Act, and how changes in it could positively affect the lives of those with celiac disease. Jean’s Story – May I Have a Fruit Plate, please? My worst nightmare is going to a banquet where the food is pre-determined – known as a Fixed Menu. You never know what will be on that plate! Usually it is rubbery chicken in some kind of sauce with limp vegetables and dessert with whipped cream that won’t lose its shape in 10 years. Knowing that most of the time, there are pre-made fruit plates in the back for people on special diets, I usually flag down the server for my table and ask if one is available. Sometimes this backfires, when the food is served and the server bellows “WHO WANTED THE FRUIT PLATE?” Or, when everybody else is served and the fruit plate hasn’t found its way to the table and everyone is waiting on you to be served before eating. Very embarrassing. This always prompts the question “Are you on a special diet?” I say yes, and look down, hoping it won’t go further. But there’s always one who probes, and when you finally tell them, they inevitably say, “Oh my Aunt Sally is on a gluten-free diet. She bloats up like a dead fish when she eats gluten, what happens to you?” How do you politely divert the conversation? I have a number of conversation starters (How about those [fill in the favorite football team]? Did you see [fill in favorite streaming series] last night? What was the last book you read? Can you believe the weather we’re having?) One evening, I was at a dinner meeting in banquet room in a nice downtown hotel to discuss funding for a start-up. I quietly summoned the server and asked if they had a fruit plate, without dairy (since they often come with cottage cheese or yogurt). He said they had a few back there, and he would get one for me. I thanked him, and rejoined the conversation at the table. Servers arrived with huge trays with plates covered with metal lids. They were presented to each of the people around the table and the lids were removed with a flare. The waiter forgot about my request and huffed off with the plate he had just served when I reminded him of the fruit plate. Underneath the metal lids, guests found rubbery stuffed chicken, with a mysterious white sauce, limp broccoli, and parsley as a garnish. After a while, my fruit plate finally arrived. I was hungry. It was beautiful and had slices of cantaloupe, honeydew, strawberries, blueberries, a bunch of red grapes and wedges of orange. The others at my table eyed my colorful fruit plate enviously. I ate the cantaloupe and honeydew. I looked at the grapes – how does one eat grapes still on the stem at a dinner? I decided since they were still on the stem, to pick it up and pluck them off with my fingers. The grapes felt grainy to my fingertips. I looked more closely at them, and noticed dirt on them. They were not washed! I wondered if I could discretely wash them in my water glass… and decided there was no way to do that without looking really weird, and calling attention to myself. I put them back on my plate. I continued participating in the conversation around the table about fund raising for entrepreneurial ventures and cut into a very large red strawberry. Out popped a surprised, live green worm! He was about an inch and a half long and a little chubby. He had little green antennas and beady black eyes. He looked around – wondering what happened to his home! I obviously couldn’t eat the strawberry – and really didn’t want anyone at the table to notice the worm. I had lost my appetite anyway, and started feeling sorry about ruining the worm’s home and blowing his cover. I pretended to eat the rest of the meal, and gave the plate back to the waiter as soon as he came around. The next month, when I attended the same dinner for the same group, and ordered the same fruit plate, the strawberries were sliced. Sometimes, even with all of our conversations, precautions, and strategies, things just don’t work out. It’s part of living with food sensitivities. Discussion Questions: What are your most successful travel strategies? What restaurant strategies do you deploy in order to avoid consuming gluten? References in Chapter 9 Carpenter, Chef Daniel. Crooked Tree Culinary. https://www.linkedin.com/in/danielkcarpenter Lerner, B., Vo., L., Yates, S., Rundle, A., Green, P., Lebwoh, B. (2018). Gluten Contamination of Restaurant food: Analysis of Crowd-Sourced Data. The American Journal of Gastroenterology, 113, S658-S658. doi: no doi. Continue to: Gluten-Centric Culture: Chapter 10 - Taking Action–It's the Law! Back to: Gluten-Centric Culture: Chapter 8 - Empowering Language
  6. Celiac.com 01/12/2023 - This is a continuation of the book Gluten-Centric Culture that is being published each quarter on celiac.com. For your convenience, links to previous chapters can be found on alternativecook.com. When you try broaching a discussion about gluten-centric “truths” with your loved ones you may discover it’s not something they care to discuss. Our relationships with partners and family members are complicated with layers of memories and levels of deep-seated feelings. Few of us navigate our familial relationships with skilled communication, and many of us lack tools to even have constructive conversations. Having language emboldens us when we face the gluten-centric cultural constraints discussed in this book. It helps us to understand what is going on, to broach the conversation, and to point out “truths” that no longer work. Rather than being baffled or shut down by social encounters, try having the conversation, particularly with the ones you love—because they are worth it. Books provide ideas and tools with no guarantees on the outcome. It takes determination to cultivate relationships and to negotiate agreements. In previous chapters, we talked about the cycle of change from diagnosis to transformation. As you enter into the Big Shift (Chapter 6), working toward transformation in Chapter 7, you’ll become more confident with how to navigate situations. You’ll understand that these challenges in various “vexing venues” (Chapter 3) are part of the process. As life events perplex you, you’ll go in and out of the limbo stage testing and re-testing new “truths” (Chapter 6). You’ll even be able to say to yourself, “Oh, this situation triggered me to go into limbo. Now I need to come up with a new resolution.” After every situation, we get better at handling it. Once we enter into a new state of homeostasis, often we also transform our identity. This is the stage when our new “truths” are locked in and we “live it” (Chapter 7). We aren’t asking for acceptance, we aren’t defensive about our dietary choices, and we command respect. The benefit of a book like this one is that you’ll now be aware as you go through these phases, and it will give you more confidence. So will having new language and a new catch phrase. A New Catch Phrase Feelings of being left out or isolated because of a special need that prevents a person from being part of the mainstream are partially due to the fact we have no language to describe this phenomenon. Similar to how Tarana Burke (Burke, 2006) coined the hashtag #metoo to signify sexual harassment, and started a movement of no tolerance, we need a catchphrase to “call out” gluten-centric practices. These phrases sometimes evolve organically via social media; other times, it’s the consequence of a few passionate people finding words to name a common struggle. Many words or phrases of this nature have entered mainstream language such as: catch-22 coined by Heller (1961) meaning a no-win dilemma, groupthink coined by Janis (1982) meaning blind conformity, litterbug coined by McKeon referring to those who litter (McKeon, 1979), and meme coined by Dawkins (1976) referring to encapsulated concepts conveyed in social media. Other popular hashtags include: #sandiegoonfire to bring attention to a local fire; or others to share feelings and beliefs such as #love, #picoftheday, and #followme. My nation-wide study reveals that Western culture and language is gluten-centric, causing many who avoid bread to be suspect. I’ve pointed out how gluten-containing foods are part of our lexicon – “our daily bread,” “as great as sliced bread,” “breaking bread together,” etc. My work also points to the fact that media infractions perpetuate this belief (Chapter 1, Chapter 2). Awareness and language to describe the situation may enable conversations by those “othered” in order to experience more compassion and understanding from family and friends, possibly leading to altering gluten centric-related rituals (Chapter 5). Once developed, the catch-phrase would need to be published and promoted in popular media in order to become part of the normal lexicon used to describe when someone feels the effect of being on the outside of cultural norms. Let’s call out these situations with #glutencentric. When someone is engaging in attitudes we’ve previously discussed such as I-know-best, or expressing gluten doubt – we can respond by saying, “You probably don’t mean to, but you are being #glutencentric.” That will point out ways our culture is built on gluten-centric traditions, and hopefully will encourage more awareness and compassion. We can use #glutencentric to explain our behavior in tricky situations. The current vernacular when someone with celiac disease is poisoned with gluten is, “I got ‘glutened.” The hashtag #glutencentric derives from that – illustrating our need to take precautions to dodge cultural norms that sabotage our health. When we visit someone where we’ll be cooking in their gluten-containing kitchen, #glutencentric would explain our need to wipe down surfaces and cook in a separate place using safe utensils. #Glutencentric would encapsulate in one word why we don’t go into bakeries, kitchens, or pizzerias where gluten filled flour dust is in the air, and don’t eat foods at potlucks. Let’s say it catches on, and a friend asks you to come over and cut out Christmas cookies, you can say, “That’s #glutencentric, let’s make divinity instead!” In one word, you’ve encapsulated the lifestyle, it’s non-negotiable because it comes with a set of meanings, and you’ve suggested a naturally gluten free alternative (that still fits the holiday genre). Having a word to encapsulate this situation would entitle us to be included, but not expected to eat. For example, Liza reports, “My friend told me she had a dinner party of all of her friends and didn’t invite me because she didn’t know what I would eat. I told her, ‘Invite me. If you don’t, I feel left out, and we are letting the disease win. I want to be included in social engagements, so please invite me and I will bring my own bowl of food.’” Her friend said she wished she had thought of that beforehand. If Liza and her friend agreed on the concept of #glutencentric, it would have been socially acceptable for Liza to be invited to a dinner party and to bring her own bowl. Liza went on to say she felt she needed to “train” her friends on how to keep her safe, but engaged. This way, everybody wins. Having a catch-phrase to summarize the cultural constraints is empowering. When confronted with a snarky family member trying to push “a little” on you, you say, “That’s #glutencentric!” It will, in time, come to mean that there isn’t any more argument or debate about your resolve, so stop pushing… In time, it will be a way for us to command rights. New Language Throughout this book, we’ve learned new language to describe cultural constraints that collide with having food sensitivities or celiac disease. With this new language, we are able to understand why we feel removed from the mainstream, and now can take steps to redefine “truths” and enlighten loved ones. Let’s summarize the new language revealed in this book. To recap, the cultural constraints identified are: reluctant tolerance, gluten-doubt, able-body bias, “sorta” scientific, I-know-best, diet discretion, exclusionary etiquette, absence of agency, sacred bread, size surveillance, by the numbers, and yours, not mine. These cultural constraints “play out” in “vexing venues” such as at work, home, church, the medical arena, school, the bedroom, restaurants, (Chapter 3) around the extended family dinner table (Chapter 5), while travelling, and even in our own bodies as we struggle with the strife of illness (Chapter 4). Summary of Cultural Constraints in Book /* DivTable.com */ .divTable{ display: table; width: 100%; } .divTableRow { display: table-row; } .divTableHeading { background-color: #EEE; display: table-header-group; } .divTableCell, .divTableHead { border: 1px solid #999999; display: table-cell; padding: 3px 10px; } .divTableHeading { background-color: #EEE; display: table-header-group; font-weight: bold; } .divTableFoot { background-color: #EEE; display: table-footer-group; font-weight: bold; } .divTableBody { display: table-row-group; } Cultural Constraint Description Chapter Reluctant Tolerance "I understand people have gluten intolerance, and those people annoy me." 2 Gluten-Doubt "I don’t believe you are that sensitive!" 2 Able-Body Bias Where food served (anywhere) that does not consider those with sensitivities. 2 Sorta "Scientific" Basing opinions on sound bytes that don't tell the entire story. 2 I-Know-Best "My opinion about everything is "right" and you are "wrong." 2 Exclusionary Etiquette Etiquette rules/expectations that may cause peril for those with special needs. 2 Absence of Agency Where someone has no say, and when his or her special needs are not honored. 2 Sacred Bread Bread is a sacred food, both for religious sacraments, and at the dinner table. 2 Cultural Constraint Description Chapter Dietary Discretion When others are overly interested and judgmental about our dietary choices. 4 Sexist Scrutiny Sexist biases and expectations that may cause erroneous conclusions. 4 Size Surveillance The practice of surveying the size of women's bodies. 4 Living by the Numbers A preoccupation with weight, number of calories consumed, pounds lost, etc. 4 Cultural Constraint Description Chapter Yours, not Mine When family members deny they may have similar genetics as you. 10 Cultural Constraints in Action Reluctant tolerance – This occurs when someone says they understand the gluten free lifestyle, but their actions (and even words) indicate they are just putting up with our needs, but they really aren’t on board. People only cooperate when it is convenient for them. An example comes from Layla (#65), who described how she stayed in her mother-in-law’s house after telling her how sensitive to gluten she was. The mother-in-law acted like she would cooperate, but when Layla went into the kitchen the next day, the mother-in-law was baking cookies, and flour dust was all over the kitchen. It forced Layla to move her food to the bedroom. She limited her time in the kitchen. The mother-in-law appeared to be cooperative, but reluctant tolerance reared its ugly head when the mother-in-law decided she wanted to bake cookies, come what may to Layla’s health. Reluctant tolerance and gluten doubt often go hand-in-hand. Gluten doubt – Occurs when someone doubts our need to avoid even the tiniest molecule of gluten. Some even go to the extreme to find research to refute your claims that gluten in any quantity can be deleterious to your health. For example, when my mother said, “Oh it can’t be that bad, you must be exaggerating,” she cast doubt on my announcement that I had celiac disease and couldn’t eat gluten. Granted, my mother was on in years by the time I was diagnosed, and the thought of such a drastic dietary change was hard for her to comprehend. Also, her comment might have been to mitigate my edict to stop gluten all-together. Mom’s always want to make things a little better, don’t they? Because she was my mother, and I am conditioned to listening to her and learning from her, I doubted my resolve. She holds a lot of power over me and my decisions. She taught me what to eat from the start. If she doubted my gluten restrictions, I had to consider it. Was I over-reacting? Another example of gluten-doubt comes from Grace’s (#17) husband’s reaction (Chapter 2). Recall that he searched the Internet trying to find evidence that people with celiac disease can eat some gluten. Or Stillman (2016) who solicited her husband to ask his gastroenterologist friends to find research that gluten consumption was acceptable for her daughter with celiac disease. Denial is one of the steps to ultimate acceptance (Chapter 3, Chapter 6). Gluten-doubt is perpetuated in the media with “gluten” being the butt of jokes, causing those who hear them to question the severity of celiac disease and the need for a gluten free diet (Chapter 2). Gluten-doubt occurs when someone doubts the need for a gluten free diet. Many people I interviewed reported their spouse or family members felt they were “too restrictive,” indicating the gluten-doubt attitude. For example, Dustin (#46) said, “My wife thinks I’m too strict and paranoid.” Yet, he had just described to me how sick he was, how it took years to be diagnosed, how doctors disagreed about how to interpret the antibody blood test in order to finally diagnose him, and how he learned by trial and error just how restrictive he had to be in order to regain health. It’s hard not to wonder how his wife missed the struggles he endured. She eats gluten regularly and goes out, leaving him behind, enhancing his feelings of isolation and alienation with the disease. As his partner, her gluten-doubt makes it extremely hard for him to live harmoniously because of her lack of compassion. It would be nice of her to try to “walk in his shoes,” a little. Able-body bias assumes everybody can consume everything. Able-body bias occurs when accommodations are not contemplated for those with special needs, such as when gluten is added to foods that wouldn’t normally contain it or when restaurants do not have anything on the menu suitable for those with celiac disease. The able-body bias is dangerous because it plays out in all of the venues and can cause inadvertent cross-contamination. Some people I interviewed shared surprising things that contain gluten. For example, margaritas can contain gluten when bars add beer to their recipe. Another participant told me that some glue on tea bags can contain gluten, as can glue in packaging and to stick envelopes. Whole baked chickens can contain both gluten and dairy as do some deli meats. Packaged “fake crab” can contain gluten, as can the caramel color from soda pop—which caused two participants to react. Reusable straws can be made of gluten-containing pasta. BBQ pork can contain barley malt, used to make the meat appear glossy. Roux to thicken soup is often made with flour. Brown rice syrup and bouillon can contain gluten. Hash browns can also contain gluten because flour is sometimes used as a binder to hold them together. I have taken the same brand of probiotic/prebiotic for years. I recently bought more, and though the labeling changed, I didn’t think to look at it. Then I started having “glutened” symptoms. The product now contains maltodextrin. That’s a controversial ingredient – some do and some don’t react to it. Apparently, I do. When I quit taking it, the symptoms went away. Agar is high in iodine, as is seaweed such as the nori used to wrap sushi. Those with dermatitis herpetiformus need to know that iodine can trigger a reaction. Here’s one that really surprised me: scrambled eggs. In some restaurants, they add pancake batter to the scrambled eggs to make them fluffier. These are all examples of able-body bias – hidden poisons to some, assumed to be safe for all. Pharmaceuticals are another place where there can be hidden gluten in the drug binders. Some of the ingredient lists on over-the-counter and prescription drugs list “starch” as a binder. These binders vary from lot to lot depending on what is available or least expensive. There are websites that list drugs that are “safe,” but the best way to be sure is to do an Elisa test on any new prescription. This is costly – the tests are expensive – and medicine is wasted conducting the test. This is another example of able-bodied bias because the pharmaceutical companies do not disclose whether a drug contains gluten. Cross-contamination can happen anywhere. For example, when going to the ice cream shop, if one ice cream contains gluten, they may all be contaminated, unless the store has special practices to clean scoops in between dips. Some respondents reported that ice cream contains wheat-based thickeners not disclosed on the label. Frying oils in restaurants can also be a source for cross-contamination. If cooks fry gluten-containing foods in the same oil they use for French fries, the fries are contaminated. And in the deli, the meat slicer must be cleaned between slices to prevent cross-contamination. Safe practices have to be followed to ensure our safety. I witnessed a chef splashing water from the back burner pasta pot on the front burner grilled fish. This is an example of how easily foods are cross-contaminated. It’s imperative to observe as much as possible when you go to a restaurant. For example, I observed a server “stir in” a drop of sour cream that spilled into the guacamole at a popular chain. This little bit of dairy could poison someone with a dairy allergy. These examples illustrate able-body bias as well as how cooks in a kitchen do what they need to in order to “turn tables” quickly. A restaurant kitchen is a melee of activity, and special requests slow the line. The unfortunate reality is that we just can’t be too careful! To mitigate risk, some participants shared their strategies for staying safe, such as bringing their own food to group gatherings or keeping emergency foods with them at all times. At a potluck, if they planned to eat the food, some participants ensured they were first in line, so serving spoons weren’t cross contaminated. When going out for a “beer” with friends, many participants recommend ordering hard cider because it tastes good and looks like beer. There are several good gluten-free beers available on the market. And best of all – Oreos have a gluten-free version! Many participants recommended them. Doughnuts were the food that came up as the most missed food. There are some packaged versions, and several lucky people mentioned bakeries in their towns that carried fresh gluten-free doughnuts. “Sorta” Scientific refers to the propensity to spout off “scientific” data without telling the whole story, often misleading the listener to come to an erroneous conclusion. It also refers to scientific controversies that confuse those trying to follow a gluten free diet. These sound bytes cause us to draw conclusions from fragmented information, such as in a clickbait headline. Let’s consider the oat controversy that has become a hot topic in celiac circles. Are oats GF? It depends on who you talk to. I met a gluten free oat farmer at a convention who told me his oats are raised miles from fields of gluten-containing grains to prevent intermixing with the oats. It is not an exact science, he explained, because he cannot control the wind that blows seeds from other fields. Furthermore, his oats are processed in a gluten free plant. Oats are touted as a health-providing food because they lower glucose and cholesterol levels (Smulders, et al., 2018). And one study confirms that those with celiac disease can eat about a cup of oats a day without a problem (Hardy, Tye-Din, & Stewart, 2015). Many who are diagnosed with celiac disease say they can eat oats, while others suffer with celiac-type symptoms when they consume them. Perhaps it is because the oats they are eating are cross-contaminated, because the manufacturer didn’t grow them in fields far from gluten containing grains, or because they were processed in a facility that also processes gluten. We shouldn’t have to ask these questions. Theoretically, if the oats meet the government guidelines of under 20 ppm criteria, they should be safe for us to eat. I really wanted to incorporate oats into my diet. I missed eating my favorite oatmeal chocolate-covered raison cookies. I bought the bag of oats from the GF oat-farmer, rationalizing the $12 price tag because of the extremes he took to ensure the oats were safe. To do a real test, I quit eating all grains, including gluten free grains for three months as a “cleanse” so that I could re-introduce those lovely gluten free oats. This wasn’t easy! Grains give a certain “fullness” that is lacking when omitted from the diet. In time, I got used to the new “fullness” that comes from eating other foods. Finally, three months later, I made my favorite oatmeal cookies. I took only one bite (and didn’t even eat any of the dough as I made them!). Since my disease takes ten days to fully manifest, I waited. Ten days later, I broke out in that old familiar dermatitis herpetiformus rash, and it was not a small outbreak! Clearly, I cannot eat gluten-free oats. I don’t know whether I reacted to gluten in the oats, or to something called avenins, but I do know that the sorta scientific data wasn’t true for me! Since my oat experiment, I learned that some people may have an intolerance to oat avenins (Arentz-Hansen, et al., 2004); while another contradictory study with only two participants concluded that oat avenins did not cause reactions in those with celiac disease (Hardman, Tatham, Thomas, 1999). Which should I believe? A 2015 study with 73 participants with celiac disease found that six people reacted to the avenins in oats (Hardy, Tye-Din, & Stewart, 2015). Whether to consume oats is controversial and sorta scientific because of the conflicting results. Rather than going to the doctor for more tests, I decided to continue eliminating all grains from my diet. I felt better than ever during that three-month cleanse, when I didn’t consume any grains. Contradictory studies show how the sorta scientific assertions can really cause confusion. I-Know-Best is the attitude conveyed by others that you really don’t know what you are talking about when you say you need to follow a gluten free diet, but rather I-know-what’s best for you. We experience this in every venue, as shown throughout the book. The most alarming place I saw this was in a rehabilitation facility where my mother went after having her knee repaired. Though my mother was never gluten free, I asked them (on my own behalf for future reference) if they would honor a gluten free diet request and learned they wouldn’t without a “dietary prescription” from a medical doctor. They explained that the gluten free diet was very difficult for them to adhere to, and without specific doctor’s orders, they wouldn’t comply. Furthermore, a staff member at the facility informed me that most people following the gluten free diet were just doing it because it was the fad. Wow! How safe do you think you’d be with her preparing your foods? That’s I-know-best folks! Diet Discretion refers to the culturally-driven propensity to scrutinize each other’s diet as discussed in Chapter 4. It can also refer to the challenge faced by others who strive to cook for us, trying to adhere to our dietary needs. This notion is perpetuated by some companies who advertise “ideals” and has infiltrated society as an acceptable practice and leads to size surveillance (discussed below). In the friends and family dinner table environment, Claire (#25) shares how she deals with the diet discretion demeanor. She says, “It is such a dilemma – either to resolve to only eat your own food, or to eat what others kindheartedly prepare for you, and risk that they do not know all of the hidden words in ingredients that mean gluten.” Elaborating, she says: It depends on the situation. I don’t want to be mean to somebody who is really trying. It is a lot better for me to thank them and appreciate them. Do you want to shoot them down so they never do it again? That's the question you have to ask yourself. I have never said, ‘Oh my gosh. I can't eat that. I might be contaminated.’ I have taken food and not eaten it, but you can do that quietly and subtly. You don't have to have a fit, and throw it in people's face. You can be subtle. You can thank them for the food and not eat it. On one hand we want to be polite, and on the other hand, we don’t want to be sickened. I once gave a friend a beautiful dried fig that I specifically chose for her as a treat. It was from a specialty store. She thanked me and out of the corner of my eye, I noticed she put it into her purse. Apparently, she doesn’t like figs, but she didn’t tell me that. She was very polite and accepted it with gratitude. I admit I’ve done the same. But, other times, I felt like I was lying when I pretended to eat foods I wouldn’t dare put into my mouth. It really feels disingenuous, and, frankly, it encourages behavior I don’t want to perpetuate. That’s why I announce to the people I regularly get together with that I will bring my own food. One group collectively breathed a sigh of relief, because their dietary discretion demeanor of trying to provide “clean” foods for me caused them stress. It is really nice to have someone else make something I feel safe eating. One of my friends bakes sweet potatoes, knowing they are one of my favorite foods. She carefully wraps them in aluminum foil so the oven doesn’t cross-contaminate them. I eat them and feel so grateful that someone has prepared something safe for me. I appreciate it when my sister uses a special pan to prepare foods for me, so I don’t become cross-contaminated by their regular fare. It makes me feel more included in the family when I eat the same foods as they eat. But when I go to a friend’s home who really isn’t particularly informed or interested (or perhaps is relieved they don’t have to worry about my needs), I either bring a dish to share and serve myself first, or I bring my own bowl. It is just safer that way. But these resolves go by the wayside when something like what Claire describes: I can tell you something nice that somebody did. My friend, a good friend of mine, one of her kids got married and I was not going to say a word, her hands were so full, and she was cooking all the food and everything for her kid’s wedding. My intention was just to bring food, tuck it in the fridge in the back, and warm it up and eat it later when I had time. Several days before, she said something about a platter and I didn't understand what she was talking about. Then she asked me to cover the platter and put it in the back so it would not get cross contaminated. I said, ‘Are you seriously cooking gluten-free too?’ And she said, "Well of course, you're helping, why wouldn't I?’ She went way out of her way to do that, she was cooking for 200 people, and she still thought of me. So that was pretty cool. Claire reports she ate the food her friend prepared, with no reaction. She felt lucky and grateful. These examples illustrate the different aspects of dietary discretion, which can have negative connotations when someone is scrutinizing what is on our plate, or positive implications when others are trying to adapt to our dietary requirements. The propensity to scrutinize each other’s diet is rooted in our need to nurture. Offering food is a way to show love and to ensure that those around us are satiated. Clearly, we want to encourage that behavior from our friends and family, and how we deal with dietary discretion is determined on a case-by-case basis. Exclusionary Etiquette refers to rules of etiquette that contradict what is safe for those with celiac disease, food sensitivities, or non-celiac gluten sensitivities. How do we deal with it when presented with gluten-containing food? I hosted a book club potluck at my home. A friend brought homemade banana bread with gluten, even though I sent a note out to everyone reminding them my home is gluten free, accompanied with a list of acceptable foods. It was awkward, because etiquette dictates that we accept foods that people bring to our home with gratitude. I really like this person and don’t want to ever offend her. But since I had sent out the note and felt that this specific group of friends had a lot of insider information about the tribulations of my gluten free life, I said, “Oh, you can’t bring that into my home. I’m sorry.” And she said, “I’ll keep it out of your kitchen and just serve it on the coffee table.” Well, I can be poisoned just as easily from cross-contamination on the coffee table as in the kitchen. I had to ask her to take it back to her car. What a dilemma! I was having memories of the cleaning lady episode mentioned in Chapter 1. I didn’t know how to handle it. I thought about Liza (#68) in Chapter 5 who gave the gluten-containing gift back to her neighbor and then regretted doing that. What is the right answer? I’m not sure where the line is, but if it can contaminate you, you have to speak up. But if it is a gift that you can easily discard after the person leaves, it might be best, (even though it isn’t honest) to say “thank you” and tell the giver how much you appreciate the thought. After all, it isn’t it the thought that counts? Collectively, we have to change the rules of etiquette, so when we don’t accept food we suspect may sicken us, we can reject it without feeling like we are breaking social norms, or for fear we won’t ever be included in food-related gatherings. Absence of Agency describes situations where a person has no power in a relationship, causing them to be highly influenced by another. It manifests as the inability to act on one’s own free will or feeling the need to ask that particular person for permission to do something. For example, Ava (#7, Chapter 5) described how her mother likely had celiac disease, but continued to cook it and eat it because her father refused to eat a gluten free diet. Ava describes how her mother suffers from symptoms of celiac disease as a result. This illustrates an absence of agency on the mother’s part. If she had agency in the relationship, she would assert her needs and demand that her health concerns were prioritized. It takes courage because often we are confronting someone who intimidates or has power over us. Sacred Bread describes the cultural constraint that bread is a sacred food present at meals and ritual ceremonies. The most obvious application of this cultural constraint is with the communion host at church. This causes issues when going to church and not being able to participate in sacred sacraments. Another is the notion that a meal is not complete without bread on the dinner table (de Certeau, et al, 1998). Diets that omit bread are anathema to some, illustrating the cultural sanctification of bread. Size Surveillance – This is the propensity to judge our own and each other’s size as illustrated in Chapter 4 with our “diet” culture. It is perpetuated by companies who advertise “ideals” and has infiltrated society as an acceptable practice. I have a friend who always tells me, “I hate it that I’m so fat.” While I want to engage her to ask how she feels about it, what her plan is to fix it, and to encourage her, I don’t because she isn’t telling me to find a solution. She’s venting. But her comment causes me to discretely look at her body – something I wouldn’t normally do. I am compelled to assess for myself if she is really “fat.” This illustrates size surveillance. Her size at any given time shouldn’t be relevant to our conversation, but in fact, it is a regular topic. This seems to be true with groups of friends too. I have another friend who regularly east and drinks with her girlfriends to celebrate life’s occasions. Collectively, they also gain or lose weight throughout the year. When they are dieting, they bring lower-fat foods to consume at their gatherings, and when they are not, they enjoy higher-fat foods. Their body sizes go up and down throughout the year, and they regularly comment on it to each other. One said to me, “We’ve gained weight, so now we are on a diet.” Making dieting a team-sport illustrates size surveillance. They are all around the same age, and have individually been on and off of diets since their teens. As friends, this group is aware of each other’s body sizes. They know what size of clothing each other wears when “up” or “down.” They encourage each other while dieting, exercise together, and collectively celebrate successes. What happens when one member of the group stays thin when the others are on the thicker side, or vice versa? Would they be ousted from the group? Is being a uniform size a “condition of acceptance” in that group? Size surveillance and dieting is a major component of their ongoing discussions. Sexist Scrutiny – This illustrates the propensity of some doctors to treat women different from men. Details of this phenomenon are offered in Maya Dusenbery’s (2017) book entitled Doing Harm. In it, she points out that prescription doses are based on an average size white male and that women were often exempted from studies while in their child bearing years because of fears that hormonal changes would affect test results. Rather, tests were conducted on men and extrapolated for women. She reports that seventy percent women take a prescription while pregnant, and since these drugs were not tested on women, outcomes may be unpredictable (p. 39). She says, “often, women’s symptoms are brushed off as the result of depression, anxiety, or the all-purpose favorite: stress” (p. 3) when in fact they had West Nile virus, pericarditis, and a host of other illnesses that took several attempts before getting a viable diagnosis. Respondents echoed how it took multiple visits (and several misdiagnoses) to finally get the celiac disease prognosis. In addition to having to visit several times for a diagnosis, Dusenbery found that women wait longer in the emergency room with the same complaints as men. For example, women with stomach cramps waited sixty-five minutes compared to forty-nine minutes for men, to see a doctor. The same is true with women displaying heart related symptoms. She attributes this to sexual biases. Women in my interviews echoed similar sentiments about how they were treated in the examination room, and as they went through the diagnostic process. For example, Ruth, (#69) describes how one day she went to a gastroenterologist she had been seeing regularly for several years, without an appointment. She was actively suffering with a rash, stomach distress, constipation, and joint pain and when she called to try to get an appointment, the receptionist told her she’d have to wait two months. At her wit’s end with the symptoms – needing prescriptions to ease the agony, she decided to drive over and sit in the waiting room, hoping for an opening. She begged the receptionist to let her see the doctor. Eventually the doctor indignantly huffed into the waiting room and refused to see her. His comment implied that she was stalking him! He told her to make an appointment. She left humiliated, remaining desperate for medical attention. We need to be aware of sexist scrutiny if we are told we are symptomatic because of stress, anxiety, or hormones, so we can ask for other tests that may lead to a proper diagnosis, or find another doctor. By The Numbers – refers to excessiveness in setting physical goals for weight, food consumption, and even results on medical tests. This entails practices such as weighing food into approved portion sizes, or weighing oneself often, or setting “goals” to achieve desired numbers on medical tests. Someone who knows the number of calories they have consumed at any point in any days is enacting the by-the-numbers practice. Or if they weigh themselves every morning and record the number, and then “punish” themselves for being out of range, they are enacting the by-the-numbers practice. I once observed someone who was following a popular diet plan. I opened a bag of corn chips for us to enjoy before dinner. She asked me if I had a food scale. With it, she carefully measured out the number of grams that corresponded with one serving size of chips according to the nutritional facts printed on the bag. This is a by the numbers practice. When she finished the apportioned amount of chips (a surprisingly small amount), she then ate from the communal bowl. Together, we finished the bag! (What the bag deemed as 16 servings was two for us.) With regard to medical tests, Andreassen et al. (2015) reports that abnormal low-density lipoprotein (LDL) levels are common for those diagnosed with celiac disease. Many I interviewed were well aware of their “cholesterol” numbers. It’s no surprise. Commercials on TV inform us that we need to be aware of these numbers. Low density lipoproteins are part of the complete blood count routinely tested for heart disease. One can become obsessed trying to tweak out dietary fare or prescription doses to lower these numbers. Some patients are put on a quarterly trial, getting tested, and repeating until desired results are attained. This can cause a laser focus on the numerical outcome, rather than contemplating other lifestyle factors that could also affect the numbers. For those with celiac disease, many people I interviewed were very aware of their anti-giladin antibody levels. Anti-giladin antibodies are tested as part of the celiac disease diagnostic process (John Hopkins, 2020). Some reported that it took years to get their anti-giladin levels back to normal even though they strictly followed a gluten free diet. Knowing that it can take years to get back to normal is very important so that the patient and doctor have realistic expectations. It is also a great way to determine if you are inadvertently infracting. For example, after finally getting into the normal range, I requested the test again because I started having rash outbreaks and couldn’t figure out why. The anti-giladin number I worked so hard to get down had gone up! My doctor explained that it meant I had been infracting for a while. That’s when I discovered there was wheat protein in my hairspray. Respondents report disparity of interpretation by doctors when abnormal antibodies are detected. Some diagnosed that when only one antibody was in the abnormal range, it was “inconclusive,” while others were told that any abnormality indicated they had celiac disease. The diagnosis process varied greatly among participants. My doctor tells me we are limited by available tests and that the best “diagnosis” was if the symptoms went away with the elimination of it. The by the numbers practice is activated when we assess ourselves to the point of obsession using quantifiable standards. Yours, Not Mine – refers to the tendency for some family members to shun being tested for celiac disease. It is a “genetic” cultural constraint because it only applies to situations where family members may display symptoms but either refuse to believe a positive test, or refuse testing at all. Examples from Chapter 5 from participants include Emery (#45) who observed symptoms in her family and when she suggested they get tested, they accused her of “trying to get attention.” Or another example Naomi’s (#32) sister, waving the gluten containing food in her face saying, “It sucks to be you.” Both of these examples illustrate the yours, not mine stance, which will be discussed at length in Chapter 10. It All Makes Sense Now We’ve talked about ideologies, defining them as “taken-for-granted truths.” Throughout this book, we’ve identified the cultural constraints that keep coming up as we navigate social situations in various “vexing venues.” Awareness of these universal “givens” is the first step to change. Consider other social situations that were changed with awareness. From my study, I learned that people who find themselves on the outside of certain “taken-for-granted truths” experience conflict in various venues. We see a population that endures ridicule in the media, and exclusion such from meals and religious rituals, because ridicule (Freud, 1905/2009) and isolation (Smith, 2009) are two consequences when an individual operates outside of established norms. Recently, I explained the concept of this book to someone who does not have food sensitivities. Alluded she said, “I don’t see that people with celiac disease are ridiculed or isolated.” This is a perfect example of the response of those operating on the inside of a deep-seated “truth.” It represents how our struggles can be invisible to others. They laugh along with the jokes in the media (and admittedly, sometimes we laugh too). But, because they do not live with the repercussions, they do not notice. It is only when on the outside of a norm that one experiences the discomfort of ridicule that perpetuates social isolation. Understanding these cultural constraints and arming ourselves with strategies to address them can help us navigate challenging social situations. We talked about developing a catch-phrase to encapsulate the attainment of the Big Shift and identity transformation. Rather than saying, “I have celiac disease,” which may imply that we are still struggling with the lifestyle and symptoms of the disease, we could say, “Please don’t be #glutencentric” indicating we accept our lifestyle, and so should you. Forum Questions Above, we talked about memes and having language to describe our GF lifestyle with no qualms or apologies summarized in one word. I suggested calling out practices by using the hashtag #glutencentric. Do you think having a word to describe these cultural practices would help us gain more compassion? What situations can you think of where using #glutencentric would help? References in Chapter 8 Alice McKeon, coined word “litterbug” (1979, March, 2), Washington Post. Andreassen, O., Desikan, R., Wang, Y., Thompson, W., Schork, A., Zuber, V., Doncheva, N., Ellinghaus, E., Albrecht, M., Mattingsdal, M., Franke, A., Lie, B., Mills, I., Aukrust, P., McEnvoy, L., Djurovic, S., Karisen, T., & Dale, A. (2015). Abundant genetic overlap between blood lipids and immune-mediated diseases indicates shared molecular genetic mechanisms. Plos One, 1, 17. doi: 10.1371/journal.pone.0123057 Arentz-Hansen, H., Fleckenstein, B., Molberg, Ø., Scott, H., Konig, F., Jung, G., Roepstorff, P., Lundin, K., & Sollid, L. (2004). The molecular basis for oat intolerance in patients with celiac disease. PLos Medicine, 1(1), 84-92. doi: 10.1371/journal.pmed.0010001 Burke, T. (2006) Me Too. Retrieved from https://metoomvmt.org/get-to-know-us/tarana-burke-founder/ Dawkins, R. (1976). The Selfish Gene. Oxfordshire, UK: Oxford University Press. de Certeau, M., Giard, L., & Mayol, P. (1998). The practice of everyday life, Vol. 2. Minneapolis, MN: University of Minnesota Press. Dusenbery, M. (2017). Doing harm: The truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick. San Francisco, CA: HarperOne. Freud, S. (1905/2009). Wit and its relation to the unconscious. Overland Park, KS: Digireads.com, Neeland Media, LLC. Hardman, C., Tatham., A., & Thomas, H. (1999). Absence of toxicity of avenin in patients with dermatitis herpetiformis. The New England Journal of Medicine, 340(4), 321. No doi. Hardy, M., Tye-Din, J., Stewart, J., Schmitz, F., Dudek, N., Hanhapola, I., Purcell, A., & Anderson, R. (2015). Ingestion of oats and barley in patients with celiac disease mobilizes cross-reactive T cells activated by avenin peptides and immune-dominant hordein peptides. Journal of Autoimmunity, 56, 56-65. doi: 10.1016/j.jaut.2014.10.003 Heller, J. (1961). Catch-22. New York, NY: Simon & Schuster. Janis, I. L. (1982). Groupthink. Boston, MA: Houghton Mifflin. John Hopkins (2020). Blood Test: Gliadin Antibodies. Retrieved from https://www.hopkinsallchildrens.org/Patients-Families/Health-Library/HealthDocNew/Blood-Test-Gliadin-Antibodies Nanyakkara, W. S., Skidmore, P. M. L., O’Brien, L., Wilkinson, T. J., & Gearry, R. B. (2016). Efficacy of the low FODMAPs diet for treating irritable bowel syndrome: the evidence to date. Clinical and Experimental Gastroenterology, 9, 131-142. doi: 10.2147/CEG.S86798 Smith, G. (2009). Reconsidering gender advertisements. In M. H. Jacobsen (Ed.) The Contemporary Goffman. Oxfordshire, UK: Taylor and Francis. Smulders, M., van de Weil, C., van den Broeck, I., van den Broeck, H., van der Meer, I., Israel-Hoevelaken, T., Timmer, R., van Dinter, B-J., Braun, S., Gilissen, L. (2018). Oats in healthy gluten-free and regular diets: A perspective. Food Research International, 110, 3-10. doi: 10.1016/j.foodres.2017.11.031 Stillman, S. (2016). Why I hid my happy, healthy daughter’s medical diagnosis from her for as long as I could. Washington Post Blogs. Retrieved from https://advance-lexis-com.du.idm.oclc.org/api/document?collection=news&id=urn:contentItem:5J1X-0W31-JB4M-V2SC-00000-00&context=1516831. Yamamiya, Y., Cash, T. F., Melnyk, S. E., Posavac, H. D., & Posavac, S. S. (2004). Women’s exposure to thin-and-beautiful media images: body image effects of media-ideal internalization and impact-reduction interventions. Body Image, 2, 74-80. doi: 10.1016/j.bodyim.2004.11.001 Continue to: Gluten-Centric Culture: Chapter 9 - Travel Tips Restaurant Primer Back to: Gluten-Centric Culture: Chapter 7 - Individual Transformation
  7. Celiac.com 09/29/2022 - The book Gluten-Centric Culture is the result of a nation-wide study of gluten-sensitive adults living with other adults. Previous gluten-related studies primarily examine children. This is one of few that focuses entirely on adult social experiences. As we have seen in earlier chapters, cultural practices make life difficult for those avoiding gluten at any age. The chapters have detailed how cultural constraints such as exclusionary etiquette rules make it challenging to both be polite and dodge gluten at the dinner table. Other cultural constraints such as able-bodied biases are illustrated when only gluten-containing foods are offered, and when special needs are not considered. We’ve seen how “gluten” is the butt of jokes, causing our requests to be mocked and often making us doubt whether supposedly “gluten-free” foods presented to us are safe to eat. In Chapter 2 and Chapter 4, we learned how some in the medical community aren’t adequately trained to correlate physical symptoms with gluten consumption, resulting in mis-diagnoses such as brain tumors, stomach cancer, or mental illness, illustrating the I-know-best attitude. We’ve seen how women in particular are often victimized by sexist scrutiny in Chapter 5. In Chapter 6, we illuminated the Disease Process and how a newly diagnosed person goes in and out of “limbo” as “truths” form, eventually evolving into a new homeostasis using new “truths” in every aspect of life. This ultimately leads to the final phase of the disease process called “transformation.” The present chapter expands the transformation stage, where a person with gluten sensitivities or celiac disease can press the “replay button” on scenarios that didn’t work before. Here, we apply the new awareness gleaned from reading this book, incorporating the language, breaking down cultural constraints, and living with a feeling of empowerment. A Gift for You Before getting started, I’m taking applications and will choose three people who will receive free admission to one of the Cultural Constraints workshops that take place in October as a “thank you” to my readers. If you are struggling with some aspect of the food sensitive lifestyle, the workshop is designed to review a few constraints and roleplay how we might prevail. Once we have language and have cultivated an attitude of being empowered, we can command respect. Not understanding these cultural practices results in people feeling isolated from social events. Living the gluten-free lifestyle is a social disease (Bacigalupe, 2015), but it doesn’t have to be. Understanding is the first step to thriving in life. To apply, please click here to access the application form. Pressing the "Replay Button" In previous chapters, we’ve discussed language to broach a conversation. Just as we do when thrown into the limbo stage when experimenting with alternative approaches to a social conundrum (Chapter 6), let’s try pressing the replay button in some of the scenarios we’ve already heard about. In Chapter 5, we assessed that Gianna’s (#50) living situation indicates an absence of agency. She does not have the power to ask her husband to amend his jelly-slathering ways in order to protect her from cross-contamination. What if Gianna embraced concepts of respect and compassion and said to her husband: “Honey, every time I eat anything in this house, I feel the effects of gluten. I’m sick of being sick, and also it frightens me because I know that if I expose myself to gluten, I can develop some of the long-term illnesses associated with celiac disease. How can we work together to come up with a solution so that you do not contaminate me in my own house? This conversation asserts agency and respect. Commanding agency in a relationship is risky because people generally don’t want to deal with change or assertiveness from someone who, until now, hasn’t been assertive. It is terribly hard to do this, particularly in a long-term relationship. It may expose that her husband has no intention of cooperating on that, or any other need Gianna may have. It may trigger her husband to list a litany of things he isn’t happy with in the relationship, changing the focus from Gianna’s concerns to his own. Rather than being constructive, her husband may initiate a behavior that quells Gianna from further discussing her needs. Ultimately, it may force Gianna to make some difficult decisions. On the other hand, it is very empowering for Gianna to ask that her needs be met and that her health is valued. She is commanding respect and this is an empowering step toward transformation. We also identified that in this scenario, Gianna’s husband was operating from the I-know-best attitude. Perhaps if Gianna gave him some literature that pointed out the ill-effects of gluten consumption for those with celiac disease, he would change his mind about being so careless in the kitchen. Now, I know it may fall on deaf ears. Some people you live with are locked into the I-know-best, gluten-doubt, and able-body bias frames of mind no matter what you do! Many of these people simply lack the knowledge of how to be compassionate. I believe compassion is a learned skill, and providing examples to people on how to be more compassionate goes a long way. For example, asking someone to say, “I’m sorry you have to live with this and I’ll do everything I can to support you” gives reassurance and loving concern. Or saying, “We’re all in this together” as described by Brenelle (#56, Chapter 6) is kind. Brenelle felt supported and respected by her family members. They created a safe environment where she could thrive. But whether it works or not, by taking the initiative to have the conversation, Gianna asserts her needs and defies her husband’s I-know-best attitude. She is taking control of her situation and testing alternatives while in the limbo stage. Another illustration comes with Julia (#49, Chapter 4), whose father said, “if you are so restrictive, why are you so chubby?” Rather than debating with her father, her response to his comment was to only eat very few safe foods. She describes being hungry most of the time, and seething in anger with her father’s judgment. This shows dysfunction in the relationship, putting Julia in a constant state of limbo. She can’t thrive until she works this out. Let’s hit the “replay” button on Julia’s scenario. What if Julia said to her father: “I really need you to understand what it means for me to have celiac disease. It means that I cannot eat anything that contains gluten. Do you know what gluten is? It’s a protein found in barley, rye, oats, wheat, and spelt. It is also in nearly every processed food, and any little amount of it makes me sick. Remember when I went to the doctor and was diagnosed? That’s what they told me. I really need your cooperation. I might be chubbier than you think I should be because my body doesn’t work properly. I am eating anything I can find that I know is “safe” and not all of those “safe” choices are high-quality foods. I want to get well, and I want to exist in harmony with you. Would you please help me to avoid gluten?” This shifts the dynamic in the father-daughter relationship. Before, Julia was victimized by her father’s cajoling. By saying these words to her father, Julia exerts agency. It empowers her to restate her needs in the future. Even if her father doesn’t relent, she is taking ownership of her needs, and ultimately this might lead Julia to having more self-confidence. I’m not saying it will change the way her father acts, but taking this initiative begins to give Julia more control of her circumstances and privileges her to make positive changes for her own well-being. Let’s hit the replay button on Cousin Sandra from Chapter 1. Instead of divorcing the family, which fills me with a profound sadness on her behalf, what if she had said, “I want to be a family member and to participate in these dinners and all of your conversations. I want to be included. I have a disease that prevents me from eating some foods and I feel safer bringing my own to these gatherings. When I ate foods prepared in your kitchen that should have been safe for me, I found that I became ill – likely from cross-contamination. I don’t want to have to be sick to be included. Rather than showing my inclusion by eating the same foods, how about if I bring my own foods and we dwell on our love for each other, relish being together, and not worry about whether I’m eating what you are?” And what if she actually took it a step further and singled out the person that was the most vocal about her special needs and asked him or her in front of the rest of the family, “Can I count on your support?” Would this have had the intended affect and changed the minds of some of those around the table? I don’t know, but I do know it would have given Sandra a different attitude about her dietary restrictions. I am sure there were many at the table that wanted her to continue to be a family member and were sorry when she left. If she had continued to show up with her bowl, and demanded with her actions that she was accepted into the realm, I think in time, nobody would have cared. Sure, she might have had to endure some teasing, but what family doesn’t tease each other about one thing or another? (Have you noticed though that those who tease can’t take it well when you tease them back? Just an aside observation.) It takes incredible courage, but if you can stand up to your family or the one ringleader in your life that has been making you miserable by asserting their power and ignoring your needs, you will be able to stand up to anyone. Being assertive about your needs permeates all aspects of life – rather than being apologetic, it shifts you to being self-accepting and requiring that others accept you too. Sarah (#31) first mentioned in Chapter 3, lived in limbo when she was isolated on campus that first year because of the school’s thoughtless rule of disallowing her to comingle with gluten-eating cohorts. The school environment forced Sarah to confront the able-body bias, causing her initially to be a victim of the circumstance. Because of the school’s interpretation of the American Disabilities Act, she missed out on developing those ever-important freshman relationships that can last a lifetime. Rather than having gluten-free foods available in the dining hall, authorities at the school determined that the only way to keep Sarah safe was to isolate her in her own apartment where she could prepare her own meals. She was in stages of both food and social limbo (discussed in Chapter 6) as she crisscrossed the campus to find safe havens to eat, and endured the loneliness of not being able to celebrate and party with her classmates. She resolved her limbo-state herself by finding other people on campus that would honor her needs, and they became roommates and friends in subsequent years. Her initiative yielded a positive outcome from an otherwise difficult situation. Claire (#25) from Chapter 3, was humming along in life until she re-entered into the limbo stage when she partook in the gluten-containing host on Sunday during communion in the church venue. She felt she had to participate in the communion ritual, eating the gluten-containing host to please the priest and to comply with the Pope’s edict; while at the same time, she suffered the consequences of being sickened each Sunday afternoon and feared the long-term effects of consuming gluten on a weekly basis. It was a dilemma that invoked the I-know-best attitude, able-body-bias, absence of agency, and gluten-doubt beliefs. Whew! That’s a lot to deal with, not to mention the higher-power guilt factor imposed by some religions. Couple all that negativity with a stomachache, and you can imagine what her state of limbo felt like – mentally and physically! If Claire reconsiders her decision to partake in light of these “truths” that are in play, she may decide not to consume the host, or she may approach the church and request that they accommodate her physical needs. When faced with the same gluten-containing host dilemma, Cora (#36) from Chapter 3 took control of the situation when she decided that she would only take the wine because “The Lord knows what is in my heart.” This is a very personal decision, but one that has to be ultimately resolved to avoid constant gluten contamination. By understanding the dominant powerful forces that cause us to feel pressured into participation, we can claim agency as to what works or doesn’t for us. In the workplace, Ava (#7) from Chapter 3 showered, groomed, and dressed for work only to turn around and go home because she accidentally soiled herself. She endured humiliation when she had to explain this to her boss and co-workers who told her to take Imodium or visit the doctor. This illustrates the state of social limbo, which is an out-of-control situation, where you have no answers and when other aspects of life cascade as a result. Ava tried to explain to her I-know-best and gluten-doubting boss and coworkers to no avail, causing her to ultimately quit working there. Sometimes, that is the only answer to get out of limbo—to put an end to a bad situation. Hopefully, Ava can find a more flexible situation where this problem won’t interfere with getting her work done. Pressing the replay button is an important component of transformation. It provides alternative ways to deal with tricky social situations. Transformation Our identities evolve as we live under the veil of celiac disease or non-celiac gluten sensitivity. When we attend ceremonies, rituals, or engage in commensality with family or friends, we constantly have to remember, “I can’t eat that,” or, “I need to ask about the ingredients,” or “I have to prepare in advance the foods I’ll eat.” It weighs on us in every aspect of life in the beginning, but over time we adapt. We wear a new mantle of food awareness as we learn to live with the disease. Individuals transform themselves under their evolved identity (Charland, 1987). It is at this level where the formation of stories and new “truths” interact to ultimately transform the identity to answer the question: How do I adjust my gluten-free lifestyle so that I can thrive? When a person with an illness stops fighting, hiding, and denying her disease, and takes assertive and protective steps by disclosing as necessary, she has attained identity transformation. In essence, she “owns” the disease, considers it part of her reality and incorporates its demands into all aspects of life. When someone with a disease attains the state of identity transformation, she accepts it and expects those around her to respect her resolve. She has altered her belief system to accommodate her new situation. Her identity is reformed as a result of changes in mental and physical awareness. She has found a way to love her new set of circumstances. She’s gone through the Big Shift (Chapter 6) to transformation. When the transformed individual thinks of her homeostasis “before,” she can’t believe how much life has changed. She even thinks differently! What she once held as sacred “truths” are now redefined. Foods she used to consider “normal” are not foods to her anymore. Pizza, which used to represent a fun celebration now looks like something that will cause her agony and pain, but that doesn’t bother her. She knows how to make a delicious gluten-free alternative that’s a lot healthier! She genuinely likes her diet of healthy, whole foods and she feels a million times better than she did when she ate gluten. Many of her younger friends can’t keep up with her energetically. She has endless energy, sleeps soundly at night, and wakes up pain-free, ready for the new day. She’s established new rituals with her family, and she has altered her ways to accommodate her needs. Things are mostly smooth. Occasionally, something happens that throws her back into the limbo stage, but those instances happen less and less often. She accepts herself and is no longer feeling at odds with the world around her because she has changed her attitude. She lives with confidence and self-esteem. She is not afraid to ask politely for what she needs, and she quit apologizing for her situation long ago. Life isn’t a series of food-conflicts anymore because she has surmounted the obstacles. She loves her new identity and the graceful living she has finally attained. Positive Adaptations Scarlet (#14) conveys an example of coming to terms with gluten-free constraints in describing her first post-diagnosis Thanksgiving. She reports she was initially stumped as to what to serve, so she made cheeseburgers without buns. To this day, her family jokes about that first Thanksgiving. Family adaptation is further illustrated in Sadie’s (#41) story: “We make [gluten-free food] a fun thing, to find places to go such as gluten-free bakeries when we travel, or places we wouldn’t otherwise go to when at home.” She describes gluten-free chocolate doughnuts her husband found at a bakery 40 miles away, and how he would occasionally get them for her as a treat. These adaptation stories illustrate positive ways families accommodate the needs of the person with celiac disease. In time, these stories become integrated in the family’s collective lore and new traditions replace food-centered rituals. For example, when reflecting on her relationship with her husband, Caroline (#28) says: Food is a pretty central part of our lives. We both enjoy food. And we both come from families that have always nurtured with food. So, I am trying to shift that and find other ways to connect, and to show that we are nurturing each other without being so food-focused. We do a lot more outdoor activities, like hiking and biking. We used to be more indoors people up until that point. We are learning that together. When we want to be with friends, instead of going out, we have friends over, and I try to do a game night, instead of a food-focus night. Then, we can just have a couple of snacks versus a meal that most people would be unhappy with, if their favorite foods weren't involved. Caroline describes her adaptive strategies for spending quality time with her husband and friends without involving food. She tells how they now do physical activities rather than centering social gatherings on food. Similarly, Willow (#30) describes how she consciously tries to remove the emotional connection to licorice and baseball, separating the gluten-containing licorice association from her enjoyment of a baseball game. After a few months of eating gluten-free, Madeline (#57) said, “Wow, I didn’t realize how sick I was,” connecting her diet with her newfound health. After several mishaps, Lillian (#58) has taken the helm to host Thanksgiving and Christmas dinners, so she doesn’t inconvenience her family members with her needs, and so she is assured of a safe gluten-free meal. She enjoys her new role as host. Scarlet decided to grow the foods she consumes in her garden. She discovered a fulfilling hobby, while also assuring that she has safe foods. These are just a few examples of how study participants transformed the way they view themselves, changed their rituals, and how they interact with friends and family. Rewarding Transformations For some participants, the gluten-free diet required by celiac disease provides a rewarding personal transformation. Those who are able to find “redemptive meaning” through transformation tend to be happier (McAdams & McLean, 2013, p. 233). For example, Allison (#35) describes her transformative story as follows: When I was first diagnosed, I was well over 230 pounds. I gained 60 or 75 pounds in a year. I was so sick. Once I was put on the gluten-free diet, I immediately felt a change in my body. I lost weight. I was feeling great, and I had a lot of energy. I have lost well over 50 pounds and 21 inches. And I am still losing! I am pretty thankful I’ve gone from a size 20 to a size 12. I’m happy with the results. I am definitely an advocate for getting diagnosed with celiac disease because I can understand the frustrations and the feelings and emotions and the cycles that you go through. Because when you stop eating gluten, you are grieving, and it’s like you’ve lost a loved one. It’s a whole new lifestyle. In this story, Allison describes the grieving process and then the personal satisfaction from being on the gluten-free diet. Her transformation was rewarded with a healthier body and lifestyle. Similarly, Sally (#3) describes a positive physical transformation as a result of accepting the diet and constraints of the disease: You know, it’s something I had to go through to become who I am today, and in a lot of ways, I’m a much better person than I ever have been. I mean, I eat better. I may still be overweight, but I’m getting my leaky-gut syndrome taking care of and that’s going to eliminate a lot of my issues. I appreciate the things a lot more in my life now than I ever have. And I suspect that I had celiac disease for about 10 years before I was even diagnosed. But something changed about four or five years ago, and it went from small issues to major issues. Sally’s weight and physical health improved after eliminating gluten, enhancing the quality of all aspects of her life. Sally’s positive metamorphosis illustrates a common sentiment expressed by other study participants as they realize how much better life is with a healthy body. Forty-five-year-old Hazel reports she first attributed her physical ailments to aging, saying, “I decided that was part of getting old...like I felt like I was about 70 years old.” After being gluten-free for a while, she commented on how much better her body felt, and how much more she was able to do with it. She went from surrendering to “old age” to feeling “young” again. Correspondingly, Claire (#25) notes, “I am thrilled. I am eating healthier, and I also noticed I was more relaxed now that I got off the gluten.” Claire’s outlook on life changed from being anxious about everything to having a calmer demeanor. And Lucy (#26) describes her post-gluten transformation as follows, “I have increased energy, and symptoms I had my whole life—like abdominal pain, fatigue, and constipation—are gone. I slowly felt better and now have a lot more energy and a lot less illness in general.” Lucy enjoys a more physical life than she did before she stopped eating gluten and feels she has regained her health. My surgeon father-in-law, Jacob Peretsman reminds us: “When you have your health, anything in life is possible.” Creative Transformations Hazel (#22) describes how her life changed after being diagnosed with celiac disease. She reports, “I used to be a chef. And I have a really, really strong intolerance to gluten. I actually react tactile: if I touch it, my hands peel. So it changed my whole life. It changed everything about my life.” Hazel was no longer able to perform her trade of baking gluten-containing foods and had to relearn how to bake. Hazel’s example illustrates the entire arc of transformation. Her liminality or “limbo” stage occurred when she realized it was gluten causing her hands to peel. She describes how devastating it was to learn that materials she used for the skill she worked so hard to cultivate were causing her to have problems. She experienced the fear of being unable to do her job. Her life was upended, as she worked out a solution. But her homeostatic shift included learning to bake without gluten, while using her culinary skills. Her identity transformation occurred when she declared herself to be a gluten-free baker. Hazel makes gluten-free bread for her Mormon sacred communion and shares it with others in the congregation who are gluten-free. Her positive transformation was reinforced when her son said: “Mom, you make gluten-free food taste good.” Other participants talked of how they adapted. For example, Riley (#65) now makes a lovely, soft gluten-free bread from a recipe she found on the Internet and sells it at the local farmer’s market. She says: “It has been a really nice experience, especially when people who eat gluten want to try your food.” Isla (#39) reflects on a kind gesture from her brother. He had the bakery put several frosting roses into a separate bowl for her to eat, so they wouldn’t be contaminated by the cake. She felt his kindness indicated his full acceptance of her disease, and he was helping her to still be able to enjoy some “normal” aspects of a birthday party. Carrie (#4) describes how her once rebellious family now enjoys eating the same gluten-free foods she prepares for herself, especially her desserts. In fact, they say they like her gluten-free food as much as they like gluten-containing desserts. Cara (#53) was diagnosed along with her two sons. She describes how she brings similar gluten-free dishes to social engagements for her family to consume. Someone at one of the potlucks said, “How blessed your boys are that you are their mother, and how hard this would be if you didn’t have the positive attitude you have.” That comment made Cara feel like she achieved a milestone because she was recognized for her unique talents to make tasty foods for her sons and herself. She also felt accepted by the potluck attendees. These examples illustrate how participants became comfortable with their new homeostasis and identity transformation. Snags After Transformation A friend of mine, Margaret described how she changed her ways after her transformation only to hit a snag. They decided a few years before to stay in a hotel when visiting family and friends so that Margaret could prepare her meals in a safe environment without having to disrupt the flow of the household. This worked for several years. She and her husband, John were planning to visit her in-laws for Christmas. This time, John really wanted to stay in his parent’s newly remodeled home. It also meant a lot to his mother, Milly for them to stay under one roof to have quality family-time. Margaret briefly went back into the limbo stage and worried this would cause a host of problems for her because no one in the family is gluten-free. John’s family members have shown reluctant tolerance and I-know-best attitudes toward her before – particularly Milly – the territorial captain of the kitchen who really doesn’t like sharing it with anyone. After hearing my Thanksgiving story (Chapter 5), Margaret was also worried if Milly baked while she was there, that the flour dust in the air would cause her to have a reaction. Margaret was in a dilemma. She didn’t want to request that Milly didn’t bake her favorite Christmas cookies, cakes, pies, and breads. In Milly’s mind, it wouldn’t be Christmas without them. And Margaret didn’t want to impose her dietary restrictions on everyone. Because Margaret is so sensitive to gluten, part of her transformation was to decide not to eat foods anyone else prepared. The only exceptions are if she co-prepares, or if the person making food for her also has celiac disease and is strictly gluten-free. On previous visits to Milly’s house, before Margaret’s transformation, Margaret ate “gluten-free” foods that Milly prepared, only to become sickened. When Margaret asked about ingredients, Milly said, “Oh come on… you are being so dramatic.” Margaret actually wondered if Milly didn’t “accidentally” slip gluten into her food just to observe what happened. Needless to say, they don’t have a trusting, loving relationship. Margaret determined the only way to stay safe is to bring her own food, cooking utensils for meal preparation, and an emetic, just in case she inadvertently consumes gluten. “Best to get rid of it fast than let it go through the body,” she said. Rather than worrying as she would have in the past, about bread crumbs on the counter, flour dust in the air, or being contaminated from the sponge in the sink, Margaret took the initiative to call her mother-in-law to ask: “How can we work together to accommodate my special needs during our Christmas visit?” Asking the question this way suggests a cooperative attitude, and empowers Margaret to (re)broach the topic rather than sweeping it under the rug. It brings to light that Margaret has a bona fide disability that needs to be addressed. Margaret came up with a few ideas that she thought would protect her while visiting. During the conversation, Margaret explained that on way to her mother-in-law’s house from the airport, she would need to stop at a grocery store. She told Milly that she would need a designated cooking area in the kitchen that was hers, about 2” x 3” that she could put her things on and cover with a dish towel. She asked that all baking be finished 24 hours before she arrived (it takes 24 hours for the flour dust to settle). She asked Milly to have space in the refrigerator for her food (about the size of two gallons of milk) where she could put her bag of groceries – that everyone else knew to leave alone. In the kitchen when cooking occurred, Margaret explained to Milly that she would need a burner so she could use the pan and lid she would bring with her to cook a one-pan meal. Margaret worked out how to make a quick, easy one-pan dinner and practiced making them at home so she could time her meal to be done when everyone else’s dinner was ready to serve. Her plan entails making a piece of fish or chicken she cooks half way (about 10 minutes), then adding slices of baked sweet potato, a fresh vegetable such as broccoli, and a little water for steam, then put the lid on it and cook it on medium for 10 more minutes. Margaret said since her pan is covered during the cooking process, if someone is cooking gluten containing foods, she won’t worry too much about cross-contamination. She plans to bring her own seasonings (since some packaged mixtures contain gluten). Broaching that conversation with Milly shows a lot of courage on Margaret’s part – she owns her special needs. She is not imposing them on anyone, except to ask for room in the kitchen to be accommodated. She also commands respect and took the initiative to get it. She also took the burden of providing gluten-free foods from Milly – taking all of the initiative to purchase and prepare her own foods. As a hostess, Milly must be relieved, (at least you’d hope so.) While driving from the airport to Milly’s home, Milly pushed back. Milly said she had plenty of frozen meats and vegetables in the house that Margaret could eat and that they didn’t need to stop at the store. Milly explained that she has a list, it wouldn’t take long, and then she’d be sure to have everything she needed. Milly said, “I’m insulted!” Margaret said, “Please don’t be insulted. I react to the smallest amount of gluten and this is what it takes for me to be safe. I really need you to understand I’m not insulting your food, you make beautiful foods I wish I could eat, but this disease makes it challenging for me. I’m doing what I need to do in order to stay well.” Under her breath, Milly said, “No wonder John has gotten so skinny!” Reluctantly, she agreed to stop at the grocery store. Then Milly said she wanted to make her special Christmas morning braided cinnamon roll to serve hot from the oven for breakfast. Margaret didn’t want to impede on any of the established traditions, so as a concession she said she would wear a mask while the roll was baking, but asked that Milly make the dough 24 hours prior to her arrival. John and Margaret adjusted their arrival date accordingly. It is hard to demand that special needs are addressed, especially when staying in someone else’s home. Usually there is a “ruler of the kitchen.” Cooks tend to be territorial about their domain and don’t want people in their drawers and cabinets either. If you know there is someone in the home that feels this way, it’s best to have your own station somewhere off from the main part of the kitchen, so most of your food preparation can be away from where the “ruler” presides. In this situation, cooking on the same stove top is a problem. If you can bring a hot plate, that problem is resolved. It takes courage to assert yourself in this way. If you already have strife in the relationship, this can easily add fuel to the fire – but it’s better to take precautions than to starve yourself, or be “glutened.” Some people, like Margaret react to such a little amount of gluten that it’s not worth taking any chances. I admire her courage and hold her up as a role model for how to gracefully travel and stay in someone’s home. She has inspired me to adapt her practices when I visit other people’s homes, though staying in a hotel where you can pre-make your meals for the day is so much less complicated (and peaceful). It’s A Process It seems that the first year or so, people often struggle to figure out what they can and cannot eat. They are coming to terms with their personal levels of sensitivity, which often change as the body gets cleaner. Several participants noted (and I have also experienced this) that the cleaner the body is (after avoiding gluten for a period of time), the more sensitive to gluten it becomes. Much of the first year is also spent in teaching our friends and loved ones the severity of the disease. It is hard enough for the person with celiac disease who has been consuming a lifetime of gluten to come to terms with a gluten-free lifestyle. As we have seen, study respondents described lots of struggles at home in the transition to gluten-free. Since food is integral to most social situations, many described relationship problems, breakups, separation, and general turmoil. Gluten-free restrictions permeate nearly every aspect of life. How families handle these restrictions is a barometer for how well they handle conflict and disruptions, often revealing other relationship problems. And over time, these food-related alterations might take a toll on all aspects of family life (Konrad, 2010) as we have seen with several of the participants who reported major changes in their relationships. There were problems before they were diagnosed; afterward, things escalated, so that the gluten-free diet became the catalyst that prompted change. Grace (#17) conveys the heartbreak that accompanied her Big Shift (Chapter 6) and identity transformation: I miss looking forward to eating. Sometimes I view food more as an enemy. I used to love it. I think back to the days when I would get excited about knowing we would go to a certain restaurant to eat. Or, when my mom was making lasagna for a special occasion. My family celebrated around food. When you look at photo albums of my family, there are more pictures of food than there are pictures of people. Because that’s what an Italian family does. And the holidays, the special things that were baked for a specific holiday, whether it was special Easter bread at Easter time or a certain Italian cookie for Christmas, or whatever the tradition was. I miss that. And I don’t feel that anymore because I can’t eat lasagna. Christmas comes and goes, and my mom makes at least 10 different kinds of cookies, and multiple dozens of each one. She starts on Thanksgiving, and she would put them in the freezer. She would put them in shoeboxes. And she would freeze them. And then at Christmas, we would have them. It’s been four years, and I haven’t had any. And she still does it. So I’m like, don’t even show me mom. She’s another one that doesn’t get it. She’ll call me and tell me, ‘Oh, yes, this morning I tried a new recipe for this homemade muffin’… And I’m like, ‘Oh, mom, really? Do I need to hear this? Do I need to hear about your homemade muffins?’ So, now I look at food more like an enemy. I get angry at it. I miss that excitement. Grace’s story emanates remorse and a longing to enjoy her mother’s food with other family members. She also expresses anger at her mom’s lack of understanding of her dietary restrictions, and at her own inability to eat foods the way she used to. Food, which once represented practices of love, is now an adversary, and an enemy. Her homeostatic shift encompasses her grief, losing the ability to eat the foods of her heritage, as well as the acceptance that this is how it is from now on. She concludes the story with, “This is my reality.” Though she admits to mourning her past lifestyle, she conveys a high degree of acceptance and a transformed identity. These redemption stories illustrate how the sharing of our stories can result in rewarding transformations after the homeostatic shift. I also observed that people’s acceptance of life with celiac disease changed over time. The longer someone lives with it, the more they seem to adapt to the lifestyle. Those newly diagnosed seem to struggle more with all of the elements of what to eat and how to navigate the imposing cultural constraints. Those who have had it a while figured out what diet works best for their bodies, and have incorporated successful adaptive strategies for social encounters. Throughout this book, we’ve learned that when we have a life-altering diagnosis, (or really any life-altering event), dominant cultural constraints may no longer serve us. We have to redefine our own set of “truths,” work with them to tweak them out for ourselves, such as when we experiment with foods and in social settings. It is a balancing act that takes time. In the past chapters, we’ve discussed examples of how respondents shared the discomfort of shifting truths in various venues as they struggled in the limbo stage: workplaces, restaurants, and schools. Here, cultural constraints were challenged and “truths” were redefined as a result of being diagnosed with an illness. Next, people experienced the Big Shift as they accept their new circumstances and attempt to gracefully navigate life in light of it. The Big Shift occurs when we realize life will forever be altered to a new definition of homeostasis. Finally, we transform our very identity to accommodate our new “self.” It’s a process that takes years. It certainly did for me. Jean’s Transformation Story Celiac disease has transformed nearly every aspect of my life, my occupation, and my social interactions. My individual transformation, as with most people, happens over the course of several years. Before I am properly diagnosed, I find myself between jobs. Feeling miserable and wondering who would hire me with my maladies, I decide to attend a vegan “healing” cooking school for a year. It makes sense to take some time off to regain my health. Diet is something I can control, and I hope it is the answer since none of the drugs doctors prescribe work. I find a cooking school that advertises teaching “The Art of Healthful Cooking.” It is a professional, certified school run by a culinary artist in Boulder, CO. I love it the minute I walk in. The aroma from the kitchen melds a combination of cumin, cinnamon, chocolate, green tea, chili powder, and lemongrass. It is intoxicating. The teacher teaches us the “Zen” of cooking, where the body and senses reflect taste combinations to the chef. Students never use a recipe and learn to creatively employ what is on hand. In the course of becoming a vegan chef, I learn about healing foods, grains, beans, vegetables, nuts, seeds, and fruits. Other teachers at the school teach me how to make beautiful gluten-filled baked goods and how to manipulate dough to get the best crumb and texture. The most important thing I learn is “ratio” baking and the concept of “to fit.” Though the cooking school is not gluten-free, these techniques later enable me to develop recipes for my gluten-free baking cookbook. Another significant thing the teachers teach me is to focus on how the foods make you feel as it progresses through the digestive process. Does it make you feel satisfied and comfortable? Or, do you feel like your body is fighting the food? I don’t put two and two together, but it is a glimmer of what is to come. How I love that cooking-school phase of life! This experience contributes to my new identity once I learn my maladies are caused from gluten. Shortly after I finish the cooking school, I am diagnosed with celiac disease. While I am glad to have a diagnosis, I still feel untethered. One day, my husband shows me an article in a magazine announcing a contest called “Win Your Dream Job.” It promises coaching from experts, a new computer system, cash, and best of all, the opportunity to consult with renowned career mentors appropriate to the winner’s dream job field. I fill out the entry form and send it in. And wait… Wow, imagine winning! But even if I don’t win, just writing about my “dream” help me to formulate what my next step in life will be. Alternative Cook, LLC is born. I immediately start working on the first instructional DVD. I don’t know what gave me the idea that I would be as engaging as Rachael Ray, but when I watch the first few segments of the “takes,” I am embarrassed to see that I am a chatty airhead. One of the people who sees me in those early “takes” says I am condescending and bossy. (Now that hurt… and how can a person be bossy on a cooking video?) I am going for “warm, engaging, and insightful. Another describes me as “pleasant and straightforward.” That is better but I have a long way to go. Then one day, the phone rings. I am one of three contest winners! I feel validated. Like others I interviewed, my life was transformed with the diagnosis. The process of attending cooking school, creating the instructional DVDs, becoming a published gluten-free cookbook author, and then realizing that gluten sensitivities impose social constraints and earning a PhD to study that, is how I came to terms with having celiac disease. Food has defined my life and it has been either my greatest nemesis or my healing solace, depending on my choices. It has determined how I spend most of my time, altered my career, and has consumed my thoughts for the last two decades. As I look back on this path, the steps I’ve had to take to surmount physical issues amaze me. It has truly shaped my identity, occupation, and trajectory for the second half of life, and I feel like I’ve been through hell and back with pain, suffering and dealing with some of the professionals in the medical community. As wonderful Julia Child said when her cookbook was initially rejected, “At least it kept me occupied for many years.” Celiac disease has given my life a meaningful purpose while evolving into my transformed identity as “an insecure, overachieving orthorexic.” I am grateful for finally being diagnosed, and for the life path it put me on. Summary of the Transformation Process We’ve now covered the components of transformation. Re-capping the Disease Process from Chapter 6: we live in our happy state of homeostasis until we experience a life altering event such as a diagnosis with celiac disease; then we question everything we once held as true, learning it isn’t true for us anymore; we enter the “limbo” stage or liminality where we have to experiment with new strategies in order to survive physically and socially. This is an uncomfortable stage when we think we’ve got it all figured out and the rug is repeatedly pulled out from underneath us. Slowly, we come to terms with it and enter into a new state of homeostasis where our new “truths” seem to be working for us. This is the Big Shift. Finally, we transform our lives so that living with the disease isn’t the focus of everything we do. It becomes normalized and we can function smoothly once again in life. While undergoing the process of transformation, we have learned to command respect, to educate those we love, and to expect compassion. It’s a process that applies to anything that changes the way we think. Transformation doesn’t require a disease diagnosis to occur. It happened to the entire world when it was determined that the Earth wasn’t flat. Everything about how we had previously thought about the Earth changed in that moment. The collective population had to go through a process of transformation to re-think everything that had been previously thought. It happens when there is a global pandemic and we have to alter every aspect of our lifestyle, or when any life-altering event happens. This is the process we go through. Some get stuck in one component. For example, some may never get out of the limbo stage, as illustrated with the participant stories above. Others may never even get to the point of defining new “truths” because it is just so different from how they believed. For example, a religious person who thought of bread as a sacred food may never be able to eliminate it from their diet. By understanding the process, we can navigate ourselves through it, and hopefully get to the other side with a rewarding transformation. Moving Forward Having language equips us with tools to discuss these evolving “truths.” The next chapter provides a summary of the language developed herein, as well as proposing a catch phrase to efficiently communicate without long explanations. Discussion Questions: 1. Describe what life looks like for you, now that you’ve completed the stages and entered into transformation. ___ References in Chapter 7 Bacigalupe, G., & Plocha, A. (2015). Celiac is a social disease: Family challenges and strategies. Families Systems & Health, 33(1), 46-54. doi: 10.1037/fsh0000099 Charland, M. (1987). Constitutive rhetoric: The case of the people Quebecois. Quarterly Journal of Speech, 73, 133-151. doi: 10.1080/00335638709383799 Konrad, W. (2010). Food allergies take a toll on families and finances. New York Times, Late Edition (East Coast) May 15, 2010. McAdams, D. P., & McLean, K. C. (2013). Narrative identity. Current Directions in Psychological Science, 22(3), 233-238. doi: 10.1177/0963721413475622 Continue to: Gluten-Centric Culture: Chapter 8 - Empowering Language Back to: Gluten-Centric Culture: Chapter 6 - From Shaky Ground to the Big Shift

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  9. Celiac.com 09/19/2022 - A team of researchers recently set out to calculate rates of non-coeliac gluten sensitivity (NCGS) in a group of fibromyalgia patients, to evaluate their clinical response to a six-week gluten-free diet, any improvement in symptoms, rates of diet responders who did not meet non-coeliac gluten sensitivity diagnostic criteria, and any baseline characteristics associated with diet response and diagnostic criteria fulfillment. The research team included Miriam Almirall, Francesc Casellas, Joan Dot, Inés de Torres, Hegoi Segurola, Sara Marsal. They are variously affiliated with the Department of Pathology, Department of Endoscopy, Department of Rheumatology, and the Nutritional Support Unit ant the Hospital Universitari Vall d’Hebron, Barcelona, Spain; the Rheumatology Research Group, Vall d’Hebron Research Institute; the Digestive System Research Unit Gastroenterology; and the Department of Morphological Sciences, Autonomous University of Barcelona. The team carried out an uncontrolled prospective experimental study in a group of patients with fibromyalgia from a specialized hospital ward. The team analyzed the percentage of patients who met the Salerno Experts’ Criteria, responded to a gluten-free diet, improved their symptomatology and baseline characteristics, and met diagnostic criteria. In all, the team found a non-coeliac gluten sensitivity rate of about 6% in 142 patients. About 22% of those showed an improvement in intestinal symptoms on a gluten-free diet. In total, 74.2% of the responders did not fulfil the Salerno Experts’ Criteria. The presence of diarrhea and intraepithelial lymphocytosis and lower levels of anxiety were predictive factors of gluten-free diet response. No predictive factors of non-coeliac gluten sensitivity criteria fulfilment were found due to the low number of discriminators between gluten and placebo. These results show that patients with fibromyalgia have non-coeliac gluten sensitivity at rates similar to the general population. That means a gluten-free diet won't be appropriate for all patients with fibromyalgia. However, it could be useful for patients with diarrhea or intraepithelial lymphocytosis, at least to assess any improvement in intestinal symptoms. Read more in Rheumatology
  10. Celiac.com 07/01/2022 - If you’ve been reading from the start (Chapter 1), you understand the social influences that work against your quest to diligently follow the gluten free diet. You’ve developed strategies for how to deal with each of the “vexing venues” (places we run into trouble) discussed in Chapter 2. In Chapter 3, you’ve uncovered how long-held “truths” don’t serve you, and you have implemented new “truths” imposed by your food intolerances. If you are a woman, in Chapter 4, you discovered how you might experience more pressure than your male counterparts when navigating aspects of society. In Chapter 5, you learned how the gluten free lifestyle plays out on the home front. Throughout, you’ve heard first-hand from participants from Dr. Duane’s nation-wide study, which have perhaps validated your personal experiences. In this next iteration of Gluten Centric Culture, we discuss what happens when you think you’ve got it all worked out and something goes wrong. In future chapters, we’ll discuss how things can go right more often because of your approach, even to the point where your life is rewarding and inspiring again. Jean’s Back on Shaky Ground Seven years into my gluten-free life, I broke out in another full-body rash. I couldn’t imagine what caused it. I thought my kitchen was completely gluten free, but something caused this. I asked my husband, “Did you by chance accidentally bring a doggie bag home from a restaurant that might have contained gluten?” “Nope,” he said. I wondered, “Did I buy something from the bulk bin at the grocery store?” Since the rash takes ten days to show up after ingestion, I looked at my calendar from ten days ago. That day, I went to a restaurant my friend wanted to go to that is famous for sliders. She ordered sliders, and I had a lettuce and tomato salad. On a cold dreary day ten days later, I walked several miles from campus to that restaurant just to ask if there was any chance that the salad I ate was cross-contaminated. They claimed it was impossible. I felt betrayed and angry. I am always so careful. The rash is so itchy -- I bought several bottles of clear calamine lotion and rubbed it all over my body. It gave me about ten minutes of relief before the itching raged again. I took histamine blocks in the day, and antihistamines in the night. Over the next week, the misery got worse before it got better as the rash bloomed over my body. It took ten days for the itching to subside and six weeks for it to go away completely. Meanwhile, I still didn’t know what caused the reaction. The GlutenEZE strips are little chemistry packets (complete with a test tube) you perform at home to see what contains gluten. I used them to assess everything that might have been contaminated. After I examined all that I could think of in my kitchen, I contemplated what might be in my bathroom. I looked at the ingredients on my hairspray (some hairsprays contain wheat protein). I inspected the soaps I used to see if the ingredients changed in the new batch I bought. I read the labels on all the creams, lotions, foundations, blushers, lipstick, eyeliner, eye shadow, brow pencil, face-masks, skin hydrators… Nothing contained gluten. I was baffled. What could have caused this? By day seven of the rash breakout, I had tested 43 things in my house (spending $473 on test strips and still no answer). Then I remembered that about ten days before getting the rash, I came home from school feeling ill. My head hurt, which is rare, my chest was tight, and I just wanted to lie down. I remembered taking an aspirin that day before I took a nap. The aspirin had been in my medicine cabinet for several years. I read the ingredients on the aspirin and one of the ingredients said “starch.” When I shook the GlutenEZE test tube, the contents exploded all over my bathroom. That had never happened before! I looked at the results and it showed the aspirin tested positively for gluten. Eureka! I finally found the cause. One little aspirin tablet caused all that misery. Wait a minute. One little aspirin caused that? How much gluten can be in one little aspirin tablet? The reaction itself, and then the realization of how sensitive my body is, amazed me. I felt like I did when I was first diagnosed – questioning everything. During that frantic week of testing before I discovered it was one aspirin, I was afraid to eat in my kitchen, let alone anywhere else. I lost weight, and I existed in an uneasy condition of uncertainty and doubt. Even though I had lived several years harmoniously with my body, that incident made me feel like I was starting over. Taking an aspirin was a natural thing to do. It never occurred to me to read the label. But realizing what havoc it caused, becoming a preoccupation for weeks, I felt vulnerable and scared because everything in my house wasn’t “safe” after all. Also, I thought I’d be more resilient to a tiny infraction of gluten in my body. After being gluten free all those years before, my body was as clean as a newborn baby. (That may actually be why I reacted so violently.) Wow! Up until that incident, I thought I had a little more “tolerance.” It made me question the “truths” I held as a person with celiac disease. I was thrown into a state of “food” limbo – rethinking what was OK for me to consume and what wasn’t. The Disease Process When we are diagnosed with a disease, we undergo a mental shift to accept what our body could do before and what it can do now (Rohrbaugh, Mehl, Shoham, Reilly, & Ewy, 2008). We have to learn how the disease inhibits us, and how to work around it. The first step is to figure out how to avoid experiencing undesirable physical symptoms of the disease. This includes relearning everything we can and cannot eat in a bite-by-bite process. Once we have a handle on that, then we think about how to enter back into our social realms with our new set of circumstances. We don’t want our disease to be the main topic of the conversation, of course, but we do need to learn how and what we can do to be included without causing ourselves to regress into the symptomatic phase. Previously taken-for-granted beliefs are shattered as new information is accumulated. What we thought was true before being diagnosed evolves, and even after living with the disease, we are forced to refine our “new truths.” As we navigate the gluten free lifestyle, we defy I-know-best attitudes from authorities, diet discretion practices from friends and family, able-body biases and exclusionary etiquette rules everywhere we turn (see Chapter 2). A dietary edict such as, all in moderation may be a “truth” for most people, even in the medical field (Shanahan, 2017); but for a person with food sensitivities or celiac disease, moderate amounts of an allergen or gluten could make him or her very ill—even triggering a cascade of reactions leading to death. Therefore, truth for those with food sensitivities is drastically different than truth for the able-bodied general population. New truths evolve as information is reinforced with experience. This is the point where we test our limits. For example, a newly diagnosed person may not believe she is that sensitive, clinging to the notion, a little won’t hurt you. When faced with a tempting baked treat, she may think about her asymptomatic friend with celiac disease who takes more chances. She decides to test her own limits and indulges in just one bite; if symptomatic, she may be surprised to experience an array of symptoms that force her to rethink that “truth.” These revised (post-diagnosis) food-truths are formed and reformed through experiences over time. As discussed in Chapter 2, people with food sensitivities or celiac disease may lose credibility with family members, as they struggle to understand the cause of their symptoms, and experiment with different diets to attain health. Family truths morph over time. We are born into an existing conversation, and eventually learn to take part in it (Koenig Kellas, Kranstuber Horstman, 2015; Koenig Kellas & Trees, 2006). By visiting the stories over and over again, it makes us what we become (Somers, 1994). Our ability to unravel our new truths depends on personal experience, contemporary knowledge, and influential ideologies. When we share what we know with cohorts, we can arrive at an agreed-upon truth that works for the present moment -- until the veneer wanes -- and then we have to reassess what is true for ourselves. In a dynamic, complicated process, we engage in power struggles, as we evolve new “truths” when living with disease. To complicate matters, the idiosyncrasies of food-related illness are seldom understood by those who do not live with them (Metchikoff, 2014). It is also in the disease process where we determine new trust parameters such as who we rely on to cook for us and whom we don’t; and personal level disclosure policies (discussed later in this chapter) such as how much we’ll tell publicly about our dietary needs. This ever-changing shaky ground is the start of the liminal, or “limbo” stage (Andrews & Roberts, 2015; Hout, 2017). As we move through understanding how to live with our disease, we go in and out of limbo. We fall back into the limbo stage when a social strategy we’ve used in the past fails us in a new circumstance, or when we are contaminated by a food we thought was safe. We have to rethink our resolves. That is the topic of this chapter. Shaky Ground The aspirin incident put me on shaky ground. I went from being confident about controlling my disease back to the limbo stage until I could figure out what caused the reaction. It is so easy to get complacent after a few healthy years with no reactions. My newly formed “truths” after being diagnosed were found to be untrue as I realized the seriousness of having celiac disease. The limbo (or liminal) stage is the in-between status (Nicholson, Babin, & Briggs, 2017), a restless and unsettling state, where old and new “truths” are challenged. Nothing seems consistent, and everything has to be re-thought through. The “Limbo” Stage There are two branches in the limbo stage: food limbo and social limbo. Food limbo is when something you thought you could consume turns out to poison you such as when a cherished packaged food changes ingredients, or a pharmaceutical changes binders. That’s a betrayal that requires work to isolate what exactly caused the physical reaction. Then there’s social limbo, discussed below, when pre-determined social resolves backfire and you have to come up with a new strategy. Being in the limbo stage sucks. It’s when you know you have a major problem and you don’t know what to do. It happens when first diagnosed, and it might be triggered by an incident that happens years later. It puts you in at funk of self-doubt, questioning everything to figure out how to best navigate living with the disease. Brenelle (#56) reports: “When I was first diagnosed, I spent a month crying… How could this happen? Where did this come from?” This sentiment describes how many people feel when initially diagnosed (though some study participants expressed relief to finally know the cause of their maladies). Individuals adjust their self-narratives that contribute to redefining and transforming identity after a life-altering diagnosis. Though some people with food sensitivities pass through the limbo stage, some stay in it indefinitely such as in the circumstance of uncooperative family members, an inability to be assertive, or low self-esteem on the part of the person with celiac disease (Peniamina, Bremer, Conner, & Mirosa, 2014; Simpson, Oster, & Muir-Cohrane, 2018). Others more commonly go in and out of limbo as resolves work for a time, and then surprises happen, putting them back in the liminal state. Remember Gianna (#50) from Chapter 5, who described how her husband “just doesn’t get it”? Her kitchen is a “vexing venue.” Every day she wonders if what she eats will make her sick because foods that should be safe have been cross-contaminated by her husband’s careless habits such as slathering his bread with jelly and then re-inserting the knife into the jar. This ensures she exists in a constant state of limbo. That’s no way to live, especially in your own home. Not only is she worried about every bite of food she consumes, she also must wonder: If she can’t trust her husband to protect her with something as fundamental as food in the kitchen, how could she ever trust him to protect her from other threats in life? This kind of anxiety permeates all levels of a relationship. She must question what else he is doing that could harm her. How someone treats the special needs of another, especially when it imposes an inconvenience, is a harbinger of how they treat someone on all other levels. (Remember how waffles ended a marriage in Chapter 5?) Thinking Differently Now that we’ve covered “truth” and how it evolves, let’s move to discussing the idea of paradigms. This is important because it explains why it is so hard to change people’s opinions. Paradigms differ from ideologies in that ideologies are doctrines of beliefs held by specific groups of people, such as religious beliefs, governmental practices, or generally accepted rules of etiquette. Paradigms are a shorthand model or pattern for a generally acceptable way of thinking. It’s something we “know” so we don’t have to give it a lot of thought (Haverkamp & Young, 2007). For example, to most, a birthday cake signifies warmth, happiness, and a symbol of love. Consider a newly diagnosed diabetic attempting to control glucose levels with dietary restrictions. That birthday cake now signifies soaring glucose, sickness, potential coma, blindness, or even death. People who have diabetes have to “think differently” (Frank, 2013, p. 6). Within the new diabetes paradigm, the birthday cake has been altered from something fun to something dangerous. Paradigms are a quick reference template, or a kind of shorthand for comprehension, where an individual avoids the need to relearn the same things by drawing on past experiences (Bruner, 2002). Paradigms make life easy. For example, we know the earth is round. But before, when people thought the earth was flat and then Galileo determined it wasn’t – look at what happened to him! People don’t respond well when their paradigms are challenged. When paradigms change because of illness or dietary restrictions, all of your taken-for-granted knowledge must be reassessed. The change in the diabetic person’s understanding of birthday cake illustrates how a cake must now be viewed with regard to the physical responses it causes (Bruner, 1985). Other family members are forced to contrast their earlier concept of a birthday cake in light of the medical implications of diabetes—thus, they alter their original paradigm. Altering paradigms puts most in a state of limbo until they work out new paradigms. In and Out of Limbo Sometimes the state of limbo subsides as we work out strategies, experience success, alter our truths, and our loved one’s truths. But it’s not always smooth. Even with new resolves, redefined truths and adaptive strategies, life situations can throw us right back into it. The limbo stage is best described as experiencing uncertainty and self-doubt, where resolves are challenged, and new decisions must be made in order to navigate food-related social activities gracefully. The limbo state can be triggered when trust parameters are tested. For example, Robert (#12) from Chapter 2 who had gluten free meals prepared by his spouse grew to trust others in his family to fix a gluten free meal for him. Then, his aunt concealed the store-bought cheesecake, and he was sickened. The sickness caused Robert to enter into the liminal stage because something he thought he had under control didn’t work. People go in and out of limbo because things may go along smoothly for a while, and then something happens to throw you into the “back to the drawing board” phase. For example, Quinn (#41) from Chapter 5 who thought she had an understanding with her son, entered into a social limbo state when he insisted they go to the restaurant that had nothing for her to eat. She realized her son didn’t have her best interests at heart, causing her to feel uncertain about choices he made on her behalf. While visiting friends, Dustin (#46) describes how he entered into a state of food limbo when he realized that all unexamined food was unsafe to consume, even food prepared for him by his wife: If someone had told me before how [difficult it is to adhere to the gluten-free diet], I would have thrown up my hands … I wouldn’t have believed it. My wife and I went to a pool party four hours away with food to last for a couple of days. She made a bunch of food and brought it in a cooler. I ate it and became sicker than a dog the whole time. My sensitivities went nuclear. I was so tired, I couldn’t move. I kept having to visit the bathroom. I had pain and was nauseated. This isn’t working! We had an argument on the way home. ‘What is the issue?’ she asked. She’s mad, I’m mad, and I don’t feel well. I am questioning the ingredients in everything, on the grill, something was in the grilled chicken. Or maybe the garlic powder … this was the day I realized that everything may be cross-contaminated. Dustin’s story illustrates how the event unfolded differently than what he expected, throwing him into food limbo to figure out what exactly caused the reaction; as well as social limbo, because his illness caused him to isolate from the rest of the group, embarrassing him in front of his wife and friends. After having this revelation, he had to redefine every aspect of his “eating” and “social” life, to learn new “truths” and to figure out how to gracefully exist. He had to wonder why the foods prepared by his wife, someone he previously trusted to cook for him, caused him to become so ill. He was in a state of uncertainty and limbo for months after this incident. Jean, Wear a Hazmat Suit! I have been a part of a non-profit women’s organization for over thirty years. Over time, I have explained my health idiosyncrasies to them, and regularly bring my personal bowl of food to potlucks or dinner parties. I rarely eat any food I don’t prepare myself. They have seen me be careful and often comment on what I can or cannot eat. I have felt kindness and compassion from these women, who have been with me since I was first diagnosed. I felt “understood” until a recent incident. The group was going to volunteer for Oktoberfest to serve beer at a booth as a fundraiser. We learned we could raise around $3,000 for our non-profit just by serving beer. That sounded like fun, so I signed up for a shift. We even thought about wearing beer-maid costumes! My husband used to be a bartender a long time ago while attending college and learned about my volunteering several weeks after I committed to doing it. He said, “What are you thinking?” You will definitely get cross-contaminated with beer. You’ll be serving people as fast as you can pour. You’ll get covered in beer! Fizz will get into your eyes, nose, and mouth! You can’t do that!” It never occurred to me that I could be cross-contaminated just serving beer, but as I thought about it, he was right. After reacting to breathing flour-dust just sitting a couple of hours in a pizzeria, I realized I am even more sensitive than I thought. The idea of being exposed to gluten for an entire afternoon worried me. So, I wrote to the group and explained that with celiac disease, it was unsafe and asked if someone could substitute for me. Remember, these are people I have been in a group with for over thirty years. We know each other well and even consider ourselves “sisters.” I care deeply for them, and they for me. The ensuing email “reply to all” chain surprised me. One person said: “Oh, you’ll be OK. Just be careful.” Another said, “Just wear gloves.” One said, “You are being over-dramatic.” Another said, “I agree with you, it will be a beer-bath. Don’t come. It’s not safe for you.” One said, “You should have contacted me directly and not asked the group for a substitute. Now everyone thinks it will be an unpleasant experience and more volunteers may drop out.” Another said, “Jean, maybe you should wear a hazmat suit – now there’s a look.” Rather than treating me as an individual taking my “no” without debate, this group decided it was up for public negotiation. Though their comments were probably well-meaning, I was confronted with a host of negative feelings. As I read the emails, I felt mocked and shocked that those loving “sisters” were debating the level of my tolerance in a public forum. I guess I put myself in the situation by “replying to all.” I was also incensed that they felt they knew the nuances of my disease so well that they could judge what I could or couldn’t tolerate. I felt like even though I had explained my situation to them over the years, nobody cared to understand. The email chain threw me in a state of “social” limbo. In my case, the group stereotyped what they thought I could handle – not asking or listening to me, but rather trying to find ways to include me. In one sense, the email exchange could be viewed as compassionate, because they offered opinions for ways to mitigate the risk for me. In another way, it represented a collective decision-making process where others make incorrect assumptions and act on them. It also illustrates how messages escalate in electronic formats when directed to many people. How could I apply respect and compassion to this situation? I could have replied to all explaining (again) my diet idiosyncrasies, but I really didn’t want to do that. It seemed “too public” and could start another slew of opinions. I could have suggested that I run a hard-cider station for the gluten-intolerant, but since beer companies were sponsoring it, that wouldn’t work. Rather, I decided to command respect. I stated my decision not to go, found a substitute and said no more. “Men don’t tell you they are ill. No man wants to be weak.” William (#60) Levels of Disclosure The limbo stage also entails determining “levels of disclosure” guidelines. In spite of social norms, most people with celiac disease eventually disclose to ensure they receive gluten free meals prepared by someone else (Samuels, 2003). Those diagnosed with a body-compromising disease must calibrate their trust parameters to understand how to perform day-to-day activities while interacting with others. People who have disabilities regulate their lives on a schedule of pre-determined regimens, planning ahead in order to stay well or to deal with illness (Corbin, 2003) without others noticing as we learned from Ava’s (#7) “accidents.” Ava regulated her schedule to accommodate her intestinal undulations, which proved unpredictable. This takes a lot of time and can cause conflict with non-disabled people on the job and in social settings. People with hidden disabilities report that they “develop personal disclosure policies, with a variety of specific predetermined versions of their story” depending on the audience (Valeras, 2007, p. 76). Similarly, the person with celiac disease must decide to whom to “come out” and how much to disclose (Samuels, 2003, p. 237). Disclosure can trigger responses from kindness and compassion, to ridicule and mockery (Samuels, 2003). As Ava experienced, chronic diseases ebb and flow, often surprising sufferers with unexpected symptoms that perplex others and alter daily life (Charmaz, 2006). Vulnerabilities are exacerbated when the food sensitive adult ventures out to a family dinner, restaurant, or a friend’s house and must disclose their dietary restrictions in order to eat a safe meal. Disclosure may cause unwanted attention, scrutiny, and skepticism from others in a social context as described by Claire, (#25) who says, “I’m a little on the shy side, and at the dinner table when we are out to eat with friends, everybody quiets down when I talk to the chef.” Disclosure requires a high level of self-esteem and courage (Peniamina, Bremer, Conner, & Mirosa, 2014). Navigating social situations is problematic particularly when dining out. I-know-best attitude and able-body biases (Chapter 2) prevail in restaurants, where celiac disease sufferers asking for a safe meal are subject to restaurant policies and server judgment. In particular, these edicts alienate and stigmatize celiac disease sufferers who must avoid every molecule of gluten as conveyed by Hazel (#22): I think the hardest part that I have with it is, like ‘dairy free,’ people don’t even question that. But if you say, ‘I’m gluten-free,’ there is a lot of ugly stigma about it. I just wonder why it is so hard for people to accept it? I used to be very offended by all of the videos on the Internet making fun of people who are gluten free. And, now, I’m like, ‘Well, that does apply to some people because there are a lot of people who do it for non-medical reasons. But they’ve kind of ruined it for those of us who don’t have a choice.’ Hazel expresses frustration that when she disclosed her dietary needs, it was questioned, while other food-related issues such as lactose or casein intolerance are taken seriously. She further explained that she feels stigmatized asking for gluten free foods in restaurants and suggests that “fad dieters” have diminished her credibility as a person with celiac disease. Disclosure is done through narrative and often, the story must be told and retold in order to garner understanding and cooperation from friends and family and, as Hazel points out, there are many doubts with gluten intolerance. The person with celiac disease may appear inconsistent and fickle to family members. I recall a situation that happened while I was visiting a friend in a different city. I refused to eat some cookies she bought from a local bakery because they contained gluten. Later that day, she caught me eating a “cookie” I brought from home when she walked by my bedroom. She looked at me eating it as it to say, “I thought so…” but in fact the cookie was gluten and even grain free – a recipe I developed so I could travel with high-fat “cookies” though it wasn’t at all what she thought of as a cookie. We never had a chance to talk about it, but her look said it all. She thought I had contradicted myself by refusing her cookie and eating mine. I’d Rather Die Before Giving Up Bread Part of the limbo stage is testing alternative responses in scenarios to see what works. In my study, I learned that people have deep-seated attitudes about food. They have opinions of what is “right,” and what is “weird” to eat. Some expect traditional dishes on holidays or won’t give up beloved treats even if they experience illness from consuming them. For example, Liza (#68) with heart disease was told by her doctor to stop eating chocolate. Even though the doctor felt that the saturated fat in the chocolate was clogging her heart, causing her to be weak and short of breath, she refused to give up her indulgence. A friend told me her doctor told her to quit eating gluten and that she would rather die before giving up bread. The idea of giving up foods is anathema to some. We have to be sensitive to the fact that we also may have long-held paradigms about food. While in limbo, we come to terms about what we can accept as alternatives to traditional foods. The limbo stage forces us to be flexible with social situations and food choices. Foods once thought of as “good” are now considered “bad.” This can cause conflict and feelings of alienation on both sides. Hosts may be insulted, and the person with celiac disease may be stigmatized by other family members, and perhaps even excluded from future invitations to extended family meals. Narratives and family-meal folklore have suddenly been altered, which causes all involved to readjust their perspectives in order to understand the new physical needs of the family member. Additionally, family members need to be resilient to change. Struggling between the unpleasant choices of not eating, risking cross-contamination, or bringing separate foods, Sarah (#31) describes an extended family that has not adapted to her needs: All my family lives out of state in Texas. We see them over the holidays. For Thanksgiving, I bring my own gluten-free turkey, potatoes, and bread. We’ve tried to educate the extended family members, but I think because we see them so rarely it is easily forgotten. And, I really don’t like making people accommodate for me, especially large groups of people. I would rather just provide my own food rather than make people worry. She describes a situation where she prefers not to impose her needs on her family’s meal, saying that it is too much trouble to educate them. Her adaptive strategy is to arrive a day ahead to shop for “safe” foods for the holiday meal. In this case, Sarah has given up trying to educate her extended family because of personal reluctance and their lack of interest in accommodating her needs. So instead, she brings foods that look similar to the traditional foods her extended family is enjoying. In this way, she “fits in” with their expectations of what one eats on Thanksgiving. Her resolve indicates that she is shifting from limbo to a new state of homeostasis, or the Big Shift where her truths are defined, whether or not her family adopts them. We’ll discuss this new state of homeostasis but first, I want to point out that there are different responses to celiac disease among those who have it, depending on how much they react to consuming gluten. Asymptomatic vs. Symptomatic In my research, I discovered that the more a person reacts to gluten, the more uncomfortable he or she is in social situations. Asymptomatic people describe how they can go to a restaurant with their families and enjoy the “gluten free” selection on the menu without a qualm. Like asymptomatic Samantha (#29) who says, “I trust restaurants to provide me with a gluten free meal. Cross-contamination is not an issue for me.” Less symptomatic respondent, Audry (#61) says, “When I go out to eat, I take digestive proteins. Even though I avoid gluten, I cannot tell if the enzymes work because sometimes I still have problems.” People who do not react to cross-contamination seem to navigate social situations more gracefully than those who severely react. Those who are symptomatic have a sense of unrest about eating anything in a restaurant where gluten is present because the slightest amount can trigger a reaction. The chart below depicts a continuum where one end is asymptomatic and the other end is extremely symptomatic. Everyone with celiac disease falls somewhere on this spectrum. I call this the Eudemonia Continuum. I love that word, eudemonia, because it is the exact-right one to use. Eudemonia means having a sense of well-being, contentment, and calmness about something, and in this case, we’re talking about “life.” This is what we all strive for in life. Those who are asymptomatic enjoy a higher sense of well-being than those who have many symptoms. They freely interact in society, making a few small adjustments. On the other hand, symptomatic people take no risks, often eat a grain free diet, and seldom eat foods they do not prepare themselves. Those in the middle take some chances when in public, even though they maintain a gluten free home. Varying degrees of symptoms is a significant reason there is so much discrepancy in the lifestyles of individuals who live with gluten sensitivities. There isn’t a consistent response. A Sense of Well-Being vs. Sense of Unrest Lucy (#26) who is asymptomatic describes how she frequents restaurants all around the city with her husband and family. She says her life is “normal,” even though she has celiac disease. She said she enjoys gluten free beer, breads, and pastas everywhere she goes. She describes what I imagined for myself when I was first diagnosed. I thought, “Oh, just a few substitutions, and I’ll be fine.” Most respondents reported stories as told by Vivian (#51) who says: “I know a lady in a woman’s group I am in who has celiac disease. She’ll get a cupcake and eat the frosting but not the cupcake.” Vivian is highly reactive, and feels this woman who is not symptomatic undermines her credibility with the rest of the women in the group since she isn’t as careful. Vivian suspects the lady likely has antibodies as a result of her indulgences. People in her group say, “Jan is eating that, why aren’t you?” She replies by saying, “I have a more severe case of celiac disease.” Only a few of the study participants reported being asymptomatic. Most highly symptomatic respondents report shying away from eating out or in friends’ homes and live in a state of unrest, concerned about when they may next accidentally get cross-contaminated. Asymptomatic people seldom experience the BIG Shift (discussed below), but people who are highly symptomatic do, because their established “truths” are completely disrupted and have to be redefined in many contexts. Previously embraced paradigms that worked before have to be challenged in every venue. New strategies have to be established. We do this through narrative with others and self-talk as our illness evolves. THE BIG SHIFT For most, the limbo stage ends when our new resolves allow us to comfortably function in life again. Coined by Cannon (1932), the word “homeostasis” refers to a state of equilibrium experienced by the body when all systems function properly. When this steady-state is disrupted, the body strives to regain it. For example, the body maintains a steady temperature of 98.6 degrees. When this is threatened, the body adjusts to preserve its desired steady state. Cannon cites nutrition, psychological, and physical elements as potential homeostatic disruptors of the nervous, cardiovascular, muscular, skeletal, lymphatic, respiratory, and digestive systems. Similarly, after a person is diagnosed with a disease such as celiac disease, “truths” are altered to the point where participants in the study declared that their “steady state” of existence or homeostasis would forever be changed. Dustin described beginning his BIG Shift when he spent the weekend being sickened after eating the food his wife prepared for him. He had to reassess everything he thought he knew as he realized all old “truths” no longer worked. That was the limbo stage. Dustin’s ultimate BIG Shift is illustrated when he describes how his food-related practices have been completely altered. For example, he says he frequently eats before going to events or brings food he has prepared himself to protect against cross-contamination, to weddings, group dinners, and banquets. He says, “If you don’t make a big deal about it, then it isn’t a big deal.” This moved him out of limbo and into the BIG Shift stage. Individuals diagnosed with a disease undergo a “homeostatic shift” process that disrupts the individual’s old equilibrium to a new (permanent) constant. Since it’s broader than just physical functions, I’m terming it the BIG Shift. For a person with celiac disease, our sense of what used to be “normal” is disrupted with the realization that the disease must be recalled whenever food is consumed. Once new truths are solidified, the BIG Shift is when these practices become the new steady state including what we eat and how we engage in social situations. We protect ourselves, we know what we can and cannot eat, we are careful, and we are armed with a set of redefined truths. We’ve surrendered to our situation in every venue of life. We don’t fight it anymore. We don’t defend it either. We are what we are and we accept it. That’s the BIG Shift. The BIG Shift Process The following figure illustrates the BIG Shift process: As the figure shows, a person is in the “current” normal, balanced state before a life-altering event such as the diagnosis of celiac disease. His balance is disrupted and he questions everything he thought he knew. Limbo begins when he discovers old “truths” no longer serve him, and he has to figure out a new tact. This is a stage of shaky ground, where nothing is consistent. But, as humans, we seek consistency and normalcy. As we experiment with new “truths,” we establish a new set that work, and then we have a new definition of consistency. At that point, we have gone through the BIG Shift process. But note there are arrows from the new state of BIG Shift back to the limbo stage. We go back and forth as “truths” and resolves are disrupted. Coming to grips with the gravity of my disease is what imprinted that Thanksgiving “flour” experience in my memory (see Chapter 5). You may recall, everything was going along fine until the bag of flour was plunked down on the counter, causing flour dust to fill the air and settle on food set aside for me for dinner. The shift from mundane ritual behaviors, to survival mode, trying to avoid inhaling or ingesting gluten was when I entered into the limbo stage. I realized I had to redefine “truths,” juggling participating in rituals and coming to terms that engaging in activities that are normal for most, are health-threatening to me. It was the moment when I realized that social and familial life, as I had known it previously would be forever altered by my gluten-avoidance needs. It was unsettling because I knew I would have to redefine how I attended and participated in all future social events. It hit me like a ton of bricks, when it dawned on me finally that I’d have to go to extremes that may look positively weird to an “outsider” and maybe even seem extreme to a person with asymptomatic celiac disease. Jean’s Story - Thanksgiving Revisited The year after the flour incident, we were invited back to Dallas for Thanksgiving. Empowered by the stories I heard from respondents who had experienced the BIG Shift, I tried a new approach. I told my hostess that I would be providing my own food this year. (She seemed relieved that she did not have to accommodate my needs.) My husband ensured we had a hotel with a kitchen, and after we landed, we headed to the grocery store, so I could purchase gluten free foods to eat during our stay. While my friend, her husband, her daughter’s family, and husband dined on the beautiful buffet of turkey, dressing, rolls, gravy, and many lovely desserts, I ate my food in a bowl that I brought with me. Nobody batted an eye, and nobody probed about my diet. I ate alongside everybody else, participated in the lively conversation and enjoyed a pleasant experience. That experience empowered me to bring my bowl to all food-related social events that take place in homes thereafter. With that success under my belt, I experienced the BIG Shift. I accept my dietary requirements with no apology. I have a new attitude. On the Other Side Once through the BIG Shift, on the other side of limbo, a person has a new “I’ve got this” attitude, exuding comfort with newly established “truths” and the confidence to implement them. Life is much better once a person experiences the BIG Shift. For example, take Mila (#10) who considered her husband’s comment about the gluten free waffles as the final straw (see Chapter 5). In that moment, Mila went from the limbo stage to entering into the BIG Shift. She started taking initiative to rid herself of her uncaring husband, realizing that no matter what she did, he wasn’t going to change, and that continuing to live with him was going to ultimately cause her peril. I’m not advocating divorce as a way to deal with a non-gluten-free household, but I applaud the initiative she took to control her own life. As I’ve mentioned before, for Mila, this was a turning point. She realized that his lack of cooperation was a telltale sign that he was not interested enough to fix other problems. She concluded he was inconsiderate in many other aspects of their marriage; this was just one example. She also knew that she had to take the initiative to make a change, scary as it was, to protect her health. She moved from the limbo phase to the BIG Shift, where her life was now in her control, not in the hands of an uncaring spouse. Lucy (#26) describes a reoccurring family situation in this scenario: I had a birthday for my son’s party. I have always been the one to work really hard at cooking a gluten-free cake so he could eat it and I've become very good at it. I feed gluten people gluten-free and they don't know. So, there was a birthday party, and I made gluten-free cupcakes and cake, and I had other snacks for the other little kids. It was all gluten-free. And my family shows up, and they brought a regular cake, and they put it on the counter and they said, ‘Here, we brought this because we knew you would make that gross gluten-free cake, and we wanted to be sure that we had something else.’ She described this as typical behavior, saying she tries not to remember the hurtful things, because she wants her family to be a part of her life. When asked how she dealt with this situation, she said: I absolutely refuse to react to something like that. So, I took the cake and I said, ‘Okay, thank you, I will just put it over here. And I just set it on the other end of the counter so it is not close to the gluten-free stuff. That's it. I did that and walked away. But, like I said, after 15 years of just being very, very consistent things have improved. Lucy’s adamancy in spite of her family’s insulting behavior is an illustration of how the BIG Shift evolves and “plays out” over time. Her consistency ensures her sustained health, and the health of her son in family food-related situations. Let’s consider Grace’s (#17) home situation where her husband insisted on eating only “beige” foods such as pasta, pastries, bread, cookies, cake, buns, crackers, etc. She lived in the limbo stage, dodging gluten at every turn, and suffering the consequences of a reaction while co-existing in that toxic environment. She told of how he repeatedly taunted her to eat gluten, asking, “How much can you have? Can’t you just have a crumb?” Her husband did Internet research, to prove her wrong when she resisted. Grace says, “That was very, very stressful.” She confronted her husband and asked him to stop eating those gluten-containing beige foods. He refused. They reached an impasse because of his gluten-doubt attitude. This exchange illustrates the non-adaptive response where she could have existed in the limbo stage of unrest and no resolution had she continued to live with his gluten-doubt attitude, but she ultimately moved to their vacation home in California, to be closer to her daughter who goes to school there. By changing locations, she shifted to a place of equilibrium describing how she now cooks beautiful, colorful meals for herself and makes it a daily practice to go to the farmers market to purchase interesting vegetables to accompany her dishes. Scarlet (#14) conveyed the BIG Shift with a simple story. She has a collection of pretty lunch boxes that she brings to all of the food-related occasions she attends. Her family and friends know she is going to bring one, even to a wedding (she has a special wedding lunchbox). Scarlet has a lunchbox for serious business lunches and another for fun gatherings. I really admire her attitude. She is so confident! When I talked with her, I was still in the limbo stage. I was still apologizing to people, trying to eat foods they said were gluten free, getting sick, and still explaining the nuances of my diet. But her acceptance of her dietary issues, and the way she gracefully dealt with them illustrated someone who had completed the BIG Shift, and gave me a lot of encouragement to stop wavering. She didn’t hide her food concealed in her purse either. She “put it out there” unabashedly without apology and enjoys the foods she makes for herself. I applaud! Her example empowers me to be decisive and helped me complete the BIG Shift. But wait, there’s more! After completing the BIG Shift, many of the respondents report how their identity positively transformed as a result of living with celiac disease. Some found themselves in related occupations, while others learned to be more assertive about their needs. Even though people adapt in different ways, there tends to be a pattern for how we remake ourselves with the disease. That is the topic of the next chapter – the individual’s transformation. I love this part! It’s where the endings are happy because people have figured out how to live with their new set of circumstances. Need help managing your gluten free lifestyle? People seek out Dr. Duane to live the lifestyle they dream of. Please visit www.alternativecook.com. Discussion Questions: Please describe a time when what you thought was “true” about having celiac disease turned out not to be true? How did it affect you? Have you gone back and forth in and out of the limbo stage? How do you navigate your way out of it? Please share your process of accomplishing the BIG Shift in your life. What’s been the biggest positive change as a result? References in Chapter 6 Andrews, H., & Roberts. L. (2015). Liminality. International Encyclopedia of the Social and Behavioral Sciences, 2(14). doi: 10.1016/B987-0-08-097086-8 Bruner, J. (1985). Actual minds, possible worlds. Cambridge, MA: Harvard University Press. Bruner, J. (2002). Narratives of human plight: a conversation with Jerome Bruner. In R. Charon, M. Montello (Eds), Stories Matter: The Role of Narrative in Medical Ethics (pp. 3-9). New York, NY: Routledge. Cannon, W. (1932). The wisdom of the body. New York, NY: W. W. Norton & Company. Charmaz, K. (2006). Measuring pursuits, marking self: Meaning construction in chronic illness. International Journal of Qualitative Studies on Health and Well-being, 1, 27-37. doi: 10.1080/17482620500534488 Corbin, J. M. (2003). The body in health and illness. Qualitative Health Research, 13, 256-267. doi: 10.1177/10497323002239603 Frank, A. W. (1995/2013). Wounded storyteller. Chicago, IL: University of Chicago Press. Haverkamp, B. E., & Young, R. A. (2007). Paradigms, purpose and the role of literature: Formulating a rationale for qualitative investigations. The Counseling Psychologist 35(2), 265-294. doi: 10.1177/0011000006292597 Hout, M. (2017). Religious ambivalence, liminality, and the increase of no religious preference in the United States, 2006-2014. Journal for the Scientific Study of Religion, 56(1), 52-63. doi: 10.111/jssr.12314 Koenig Kellas, J., & Kranstuber Horstman, H. (2015). Communicated narrative sense making: understanding family narratives, storytelling, and the construction of meaning through a communicative lens. In L. M. Turner & R. West (Eds.), Sage Handbook of Family Communication (pp. 76–90). Thousand Oaks, CA: Sage Publications, Inc. Koenig Kellas, J., & Trees, A. R. (2006). Finding meaning in difficult family experiences: Sense-making and interaction processes during joint family storytelling. Journal of Family Communication 6(1), 49-76. doi: 10.1207/s15327698jfc0601_4 Metchikoff, E. D. (2014). Examining knowledge of the gluten-free diet among non-celiacs following the diet (Doctoral dissertation). Retrieved from ProQuest (1527994) Nicolson, B., Babin, R., & Briggs, S. (2016). Exploring the effects of liminality on corporate social responsibility in inter-firm outsourcing relationships. Journal of Information Technology, 32, 47-61. doi: 1-/1-57/jit.2015.24 Peniamina, R. L., Bremer, P., Conner, T. S., & Mirosa, M. (2014). Understanding the needs of food-allergic adults. Qualitative Health Research, 24(7), 933-945. doi: 10.1177/1049732314539733 Rohrbaugh, M. J., Mehl, M. R., Shoham, V., Reilly, E. S., & Ewy, G. A. (2008). Prognostic significance of spouse we talk in couples coping with heart failure. Journal of Consulting and Clinical Psychology, 76(5), 781-789. doi: 10.1037/0893-3200.16.1.3 Samuels, E. J. (2003). My body, my closet: Invisible disability and the limits of coming-out disclosure. GLQ: A Journal of Lesbian and Gay Studies, 9(1), 233–255. No doi. Shanahan, C. (2017). Deep nutrition. New York, NY: Flatiron Books. Simpson, A., Oster, C., & Muir-Cochrane, E. (2018). Liminality in the occupational identity of mental health peer support workers: A qualitative study. International Journal of Mental Health Nursing, 27, 662-671. doi: 10.111/inm.12351 Somers, M. (1994). The narrative construction of identity: A relational and network approach. Theory and Society, 23(5), 605–649. doi: 10.1007/BF00992905 Valeras, A. M. B. (2007). To be or not to be disabled: Understanding identity processes and self-disclosure of persons with a hidden disability (Doctoral dissertation). Retrieved from ProQuest, LLC (3258056) Continue to: Gluten Centric Culture: Chapter 7 - Individual Transformation Back to: Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together
  11. Celiac.com 03/05/2021 - In 2003, I was on a business trip in New Hampshire when my skin blossomed into an itchy, burning rash. During the daylong meeting, I felt it spreading under my clothes. I delivered a presentation to 20 people, while wondering what was happening to me. After the presentation, I went to the bathroom and open my blouse. One look at my reflection in the mirror, and I fainted. At the emergency room, I was confronted with seven different doctors, one at a time, who ask me if I have taken illicit or pharmaceutical drugs, or been exposed to fertilizer or dioxin. They told me that I was having a systemic chemical reaction. They prescribed steroids and antihistamines. They said the rash exposes my body to bacteria and instructed me to buy a thick sweat suit to wear on the plane ride home. The rash itched unbearably for ten days and took six weeks to heal. This was the first of many full-body rashes that erupted unexpectedly over the next few years. Back home, I searched Google, study journal articles. I visited specialists who did colonoscopies, endoscopies, barium enemas, and x-rays. They prescribed histamine blockers and antihistamines. I went to dermatologists who performed skin-prick allergy tests and biopsies, prescribed more drugs and steroid creams. None of the doctors could diagnose the cause of the rash. Meanwhile, the shame around my rash caused me to become antisocial. I hid at home, mostly, but when I did venture out, I wore long sleeves, pants, and gloves to hide my skin even in the heat of summer. My hands were the worst. They swelled with inflammation and itchy sores. One summer afternoon on the light rail, I was too hot to wear gloves. A woman sat across from me, took one look at my hands, and found another seat. The intensity of the skin affliction is an extension of my childhood malaise. I grew up with up with chronic stomachaches and bloating. I thought it was normal to feel sick after eating. Tests revealed that my intestines were anatomically correct albeit twisted, and I was told again and again there is “nothing wrong” with me. I ate a healthy and wholesome diet, following the nutritional advice of the day. Plus, restrictive diets were part of my family’s culture. My mother was always counting calories or on a diet, and after my father had a heart attack, the whole family followed his restrictive heart-healthy regimen. After suffering a series of painful and humiliating rash cycles between 2003 and 2005, my husband found a doctor who promised to find the cause. I endured more scopes down the esophagus and up the rectum orifice, ninety-eight needle sticks on my back, and twenty-six bubble-tests on my forearms. Still, no diagnosis. Finally, after a lifetime of stomach issues, years of painful rashes, and three months of exhaustive testing, the doctor concluded that I was reacting to gluten. My symptoms were conducive to “a rare form of celiac disease called dermatitis herpetiformis,” he said. The first rule of war according to Sun Tzu: “Know your enemy.” Learning that a protein called gluten was wreaking havoc on my body, I was determined to fight it with dietary changes. Gluten wasn’t part of the lexicon at the time and the so-called “gluten craze” was years away. I was left to research on my own. On the Internet, I read, “gluten is a protein found in barley, rye, oats, wheat, and spelt.” Think of the acronym BROWS. But that is just where gluten ubiquity begins. I learned the scores of synonyms for gluten, so I could parse labels on foods, cosmetics, and pharmaceuticals. I discovered that virtually every food I consumed contains hidden gluten. Even with this knowledge, I’d be rash-free for a while, only to have another devastating surprise outbreak. This lasted several years after diagnosis, in spite of vigilantly controlling my diet. Over the years, the rashes have become fewer, as I learned the constraints of my condition. If someone had told me how vigilant I’d have to become, I would have said, “Are you kidding me?” Every bite of food I don’t carefully scrutinize puts me at risk; even the tiniest infraction causes a reaction. I have zero resistance. Explaining my food idiosyncrasies to others is a challenge. My family members support me, though I’ve been accused of “trying to get attention,” and my childhood stomach issues have never been fully acknowledged. I trust almost no one to cook for me. Too many times I have believed loved ones who said that a food is “Jean friendly,” only to be sickened and suffer another rash-cycle. Social politeness isn’t worth the damaging physical ramifications. Food is subsistence for me, now. I limit my diet to the few foods I know will not make me sick. With these strategies, I have learned how to live and thrive with celiac disease, but it has been a long and painful journey, because not eating gluten subjugates me from many social situations. A Social Disease After living with the disease for over ten years, speaking around the country and talking to folks with it too, I realized that the important thing about having celiac disease isn’t answering the ever-important question “what’s for dinner,” but rather, how do I gracefully navigate social scenarios with people I love without alienating them, or compromising my health? I realize that celiac disease and food sensitivities are a social disease (Bacigalupee & Plocha, 2015). We live in a world that revolves around eating gluten-containing foods such as cake to celebrate an achievement, Holy Communion to unite with Christ, or breaking bread at a meal to signify friendships. Those that cannot eat gluten are cut off from these rituals, causing feelings of isolation and seclusion. Constant ridicule of gluten and gluten-avoiders in the media only add to these feelings of alienation. To understand how this affects people in their familial and friend relationships, I surveyed over 600 people and interviewed nearly 70 people nationwide who live with celiac disease or other food sensitivities, asking them to convey their recollected stories. Contentious and sometimes compassionate social interactions take place in what I am calling “vexing venues” such as the home and dinner table, holiday and extended family meals, church, restaurants, the doctor’s office, school, and even the bedroom. Since food appears in virtually every social encounter in life, those with food sensitivities or celiac disease find themselves confronting social norms every day. The attitude of those around us, coupled with our fortitude and self-confidence, or lack thereof affects how we manage these social situations. Sometimes things go well, and we can avoid confrontation and blend into a situation; other times, we are left without anything safe to eat, and people around us who simply do not understand. Positive and negative interactions described by study participants instill a need for a work such as this one to create new levels of awareness, and to be a catalyst for change in the way gluten-centric rituals are viewed. This happens on the individual level first. As described in “The Diagnosis,” and as reported by so many of my study participants, the process required to figure out what is safe to consume is scary, especially when we may react severely to even the smallest amount. But after we figure that out, we have to decide how best to communicate our needs, and live with them in everyday life. It ain’t easy! “None of us are going to follow that diet!” I recently met a woman in the pet shop as I scanned the shelves for gluten free options for my two kitties. The woman noticed I was reading the labels and asked me what I was looking for. I said, “Gluten free cat food, if you can believe it! I can’t clean vomit from the kitties if it contains gluten, so I need to find alternatives.” She then asked me if I had celiac disease. I said, “yes” and she told me about her niece. Her niece had been diagnosed with celiac disease a year ago, but her family did not understand anything about it. The girl was afraid to eat anything, withering away and getting very thin. I asked her if the other family members continued to eat gluten in the household. The lady replied, “Well, yes, of course. None of us are going to follow that diet!” I said, “Does your niece react when she consumes it?” The lady said, “Well, she has lots of physical problems, and she is a very picky eater, but we don’t know what’s ‘in her head’ versus what is real.” Then she described how the family (and she) felt like the girl overreacted, so they forced her to go to a rehabilitation clinic where she was diagnosed with anorexia nervosa. She is now back home, and struggling. This poor girl needs help to understand what she can safely eat, but clearly her biggest issue is negotiating with her family to come to terms about how to keep herself safe while living in that household. The lady described a huge amount of resistance from the girl’s family members, and a lack of compassion or understanding. Until those attitudes are changed—both by the girl and her family—she will not thrive. Why are the family members acting this way toward the girl? It’s because they are entrenched in their beliefs, and the girl’s needs are so far from what they hold as “true,” they cannot comprehend her needs. Also, the family is using “groupthink,” where they reinforce each other’s opinions while inadvertently hurting the girl (Janis, 1972). Though celiac disease and anorexia are serious, ultimately, the family’s firmly held “truths” are the root of that girl’s problems. Once diagnosed with a disease such as celiac disease (and being diagnosed is a feat in itself), the person goes through a process where they realize that long held “truths” about what they can or cannot eat, and how they participate in social situations is completely different than what it was before. Cultivating new “truths” takes time, experimentation, trials, and errors. It means trying out one social tactic or another to see how best to co-exist. It requires strength and courage by the person with celiac disease or food sensitivities, and ideally cooperation and compassion from family and friends. This process is necessary in order for the person with food sensitivities or celiac disease and their close loved ones to adjust. As medical diagnosis processes improve, gluten intolerance is known now to affect many. Gluten Awareness Roughly 95 million Americans—one in every three people—react negatively to gluten (Fine, 2003). Yet, “going gluten free” is considered a fad, ridiculed in contemporary culture, denigrated by culinary luminaries, and even refuted by the Pope! Since being diagnosed with celiac disease in 2005, I have been vaguely aware of the societal pressures that put me at odds with friends and family in virtually every social setting where I disclosed my intention to maintain a gluten-free diet. I wonder, why do I feel this way? Why was this happening so consistently in my life? And, was I alone in this experience? Celiac disease affects one in every 100 people in the United States (celiac.org). Despite these high incidence rates, American physicians often erroneously perceive it as a rarity (Fasano et al., 2003). While three million Americans have celiac disease (Fasano, Sapone, Zevallos, & Schuppan, 2015), another three million have non-celiac gluten sensitivity, which is also an autoimmune response to gluten (Uhde, et al., 2016). And one-third of Americans likely have gluten sensitivities, defined as illness from eating gluten that is not detected in current serological tests (Fasano, et al., 2015; Fine, 2003). The lack of diagnostic testing and awareness leaves many others with non-celiac gluten sensitivity and food sensitivities unaware of the correlation between their symptoms and consumption of gluten-containing foods (Wangen, 2009). Most adults are diagnosed at age fifty or older (Goddard & Gillett, 2006), and non-diagnosis of celiac disease can result in lymphoma (Green & Jabri, 2003). Non-celiac gluten sensitivity affects at least the same amount of people as celiac disease but there are no medical markers to confirm diagnosis at present; however, other autoimmune indicators are positive with the consumption of gluten in tests (Uhde et al., 2016), suggesting that celiac disease is not the only disease correlated with gluten. Pharmaceuticals exist to address symptoms of intestinal discomfort and other physical manifestations, but there is no medical cure for celiac disease or non-celiac gluten sensitivity (though hope on the horizon is discussed in chapter ten). Those with DH can take the drug Dapsone to alleviate the symptoms, but it has serious side effects. Currently, the only treatment option for those with celiac disease is a strict gluten-free diet for life (Fasano & Catssi, 2012). Symptoms of celiac disease and non-celiac gluten sensitivity affect the intestine, including “gas, bloating, diarrhea, nausea, vomiting, fat in the stool, nutrient mal-absorption, and constipation” (Fine, 2003, p. 1), and may manifest as autoimmune issues affecting the entire body, including “dermatitis herpetiformis (itchy rash), diabetes, chronic liver disease, multiple sclerosis, lupus, and osteoporosis” (Fine, 2003, p. 8). Most people don’t correlate what they eat with these physical responses, and reach for an antacid rather than adjusting their diet. Americans spend over two billion dollars a year on antacids (Statista, 2016) when simple alterations in the diet may alleviate symptoms. Some people with celiac disease are asymptomatic. They are the lucky ones who can go to a restaurant and order the featured gluten-free meal and won’t know whether the food was cross-contaminated because they don’t react. This is risky too, because they may be building up antibodies and not know it, and to be honest, their ability to take risks makes those who can’t take risks look overly cautious. Despite it’s commonness, most people don’t know much about gluten sensitivity. Nevertheless, being diagnosed with celiac disease or food sensitivities means having to rethink everything – how we eat, what we eat, where we eat, whom we eat with, and how at-risk we really are. We have to learn for ourselves whether we are asymptomatic, or highly symptomatic. It’s a process of relearning and unlearning, as we navigate our new “truths.” A Rift with Truth Changing a “truth” often creates dissonance for everyone involved. I find it fascinating to associate how deeply held “truths” affect relationships, and when these “truths” are disrupted (such as with a diagnosis that disallows a food found in virtually every bite of “normal fare”) relationships are impacted. What causes this rift with constantly held truths? What factors cause us to form these “given truths?” To answer this, it makes sense to start with defining ideology. Ideology is the kind of word that if you asked nine people what it means, you’ll get nine different answers. (Incidentally, I’ve done this!) Ideologies are common-sense taken-for-granted expressions that influence what is considered “truth” in a given community. There it is – the simple explanation of what “ideology” is—a taken-for-granted truth. Each ideology is informed by a system of ideas that support prevailing social practices and beliefs that are considered natural or normal. However, what is natural and normal for one set of people may not be for others. Consider the global warming controversy. Some consider it “true” that there is no global warming, while others consider it “true” that there is global warming. Those are two ideologies that come with a whole set of sub-beliefs. Convincing someone to change their “given truths” is challenging, and requires compelling evidence. And there is another aspect of ideology – we may know there is global warming, but decide to ignore it, treating it with willful ignorance, because as Al Gore points out, it is a very inconvenient truth. It is no fun to alter our fast-paced, technologically driven lifestyles to accommodate the planet’s needs. It is easier to rationalize making a larger carbon footprint when we have the chance to travel across the world for a tropical vacation, or drive rather than use public transportation. Similarly, it is complex to alter a person’s diet to completely omit gluten. It is far easier to conform to norms than to insist on eating different foods than everyone else eats. Ideologies are determined by cultural influences such as religious beliefs, etiquette practices, media perspectives, political views, “scientific” evidence (put in quotes, because outcomes can be manipulated for biases), and the cultivation of “truth” through storytelling. Storytelling is how we determine who we are, and what we believe. Our “story” is influenced by our experiences, what we see, read, hear, etc. as well as what those around us see, read, and believe. Collectively, we form what we consider “truths” or ideologies. For the purpose of this book, “given truths” and “ideology” are the same, but they vary from person to person, and culture to culture. We live with our taken for granted “truths” very comfortably, thank you very much, until they are rocked with a new “truth” that has to be evaluated and incorporated. A perfect example of this is when a person is diagnosed with celiac disease and has to avoid every molecule of gluten in order to thrive in life. Everyone else has to alter his or her “truths” to accommodate this new “truth.” Often people don’t want to alter their comfortable “truth,” causing resistance. Sometimes the notion of a severely restrictive diet is so farfetched, people “refuse to believe it” causing head butting and strife. I recently “butted” against an ideology with my housekeeper, who had been with me for years. I thought she understood my gluten sensitivities, because she has been in my life as I wrote cookbooks and renovated my house to make it safe and gluten free. One day she arrived at my door munching from a cylinder of crackers. I said, “Oh, I’m sorry, but you can’t eat those in here. Before you come in, you’ll need to wash your hands. Please wait there and I’ll get you a damp towel.” All ended well, it seemed. But then months later, I found her eating chocolate chip cookies in my gluten-free kitchen. I said, more forcefully, “You can’t eat those in here! Please put those in this plastic bag, and let’s try to clean off whatever you have touched.” To my surprise she responded, “You have insulted my food again! You did it before when I was eating crackers. I’m hungry and need to eat. I’ll eat whatever I want whenever I want to.” When this happened, I didn’t say to myself, “Oh we are operating from different ideologies.” Nope, after she rejected the gluten-free food I offered instead of her cookies, I just got really mad and fired her. In fact, I fumed about it when I had to clean up (and had a reaction as a result). I still fume every week when I clean my house myself now. But when I think about it, I realize that she was operating from a different set of “truths.” Her “truth” was that she was working hard and was entitled to eat when she was hungry. The idea of a food allergy or intolerance was alien to her. Somehow she missed noticing the years I was sick when she came to clean before I was diagnosed, or the other years I worked from home writing cookbooks. Though I thought I had explained it to her many times, I think the idea of being “allergic” to any food was a concept she simply didn’t understand. From my ideological perspective, after forsaking nearly every food I used to dearly love, eating an extremely restrictive diet, and living this lifestyle, I was absolutely confronted with her attitude and lack of respect or compassion for my plight. We were operating from two polarized ideologies. I am sure she felt as “right” with her beliefs as I did with mine. Both of us were reinforced by prevailing “truths” we elected to hold as our own. Members of the dominant group reinforce their own values and tend not to question their ideological beliefs. When individuals outside of the dominant group question the ideology, they are often subjected to scrutiny, judgment, and disciplining tactics, as the dominant group seeks to protect existing ideology. Major life changes, like illness, can displace a person’s position from the dominant group to an outsider group. For example, when given news of a life-altering illness requiring drastic dietary alterations, a person may reexamine firmly held truths around food and health. Ideological truths that once represented simple proclamations to live by (such as give us each day our daily bread, for example), suddenly contradict reality. The ill person reexamines his or her ideologies around social and familial situations involving food, forced to defend them with everyone else who holds a different set of beliefs. The Power of Ideology Expanding the simple definition of ideology as taken-for-granted truth, let’s examine it from different perspectives. An ideology is described as a notion that drives behavior, but that behavior can be altered when a different belief takes hold (Burke, 1969). My housekeeper’s reaction depicted her deep-seated ideological belief that she was entitled to eat whatever, wherever, and whenever she wanted, and that allergies to food were unthinkable. Whereas, I felt like after all I had gone through to learn about my disease, and the sacrifices and expenses that I had endured to thrive, she was disrespecting and disrupting my ideologies (in the sacredness of my home). There was no intersection between what she believed and what I held fast. Unified, or common beliefs would have helped us to understand each other’s perspective. My housekeeper and I shared no “interconnected beliefs” on this topic (Black, 1970, p. 70) and because of that we reached a sudden impasse and parted ways. I truly regret this. She was with me for years. I wish we could have a heart-to-heart about this, where I could say my point of view and she could express hers. It would be wonderful for us to show each other compassion and understanding, but it hasn’t happened. She “dug in” with her truth, and I with mine. Ideologies are seldom an individual’s original thought, but rather a thought driven by outside influencers (McLellan, 1986). Ideologies are common sense “truths” (McKerrow, 1989), and may be rooted in personal, self-serving interests (Eagleton, 1991). For example, a spouse who feels put upon by his/her partner’s gluten-free needs may repeat the ideological “truth,” a little won’t hurt you, in order to avoid the burden of extreme safety practices in the home kitchen. Operating under this ideology, the cook is excused from the tedium of reading every label to identify gluten-containing ingredients. The partner eating the food becomes a victim of this ideology when suffering the consequential reaction. I have a friend who continues to make gluten-containing foods in her kitchen even though her husband constantly complains of what she refers to as “his little rash.” He was diagnosed with dermatitis herpetiformus, a form of celiac disease that manifests on the skin a few years ago, but she refuses to believe he is as intolerant as the doctor told him he was. She thinks a little won’t hurt, and even though he has that “little rash” all the time, she continues to bake and eat gluten. He is a victim of her ideology. Faced with the challenges of a gluten-free lifestyle, some couples forego eating together. Study respondent, William (#60) describes his sadness that he and his wife no longer share meals. She doubts his response to his disease, judging his restrictive dietary choices are far too extreme. He reports, “She goes out to eat most of the time, and I make safe food for myself at home.” His wife refuses to cook or consume gluten-free meals, preferring to eat at restaurants with her friends. William feels isolated and distanced from his wife because of his extreme sensitivity to gluten, unable to participate in her social events. However, he remains steadfast with his resolve to avoid cross-contamination to protect his health. Another respondent reports feeling mocked with his dietary choices. When eating his special gluten-free foods at the dinner table, Bert (#63) says, “My daughter rolls her eyes and looks at my wife. They both snicker.” The daughter and wife are showing reluctant tolerance and gluten-doubt ideologies to his dietary choices. These ideologies will be elaborated in Chapter 2. Both examples from William and Bert show how living under flawed ideologies can disrupt relationships. Ideologies are also enforced by the power of the elite class, including political, economic, and even military entities (McGee, 1980). The government perpetuates ideologies with dietary standards and corporations create physical ideals that sway the public through advertisements. Media influencers such as television shows targeting food sensitivities people, quotes from celebrities about the gluten-free diet, and mocking messages such as those the in satirical comics gathered in this text collectively influence the behaviors and ways of popular thinking. Utilizing the definition of ideology as a “shared representation of social groups,” ideologies evolve from cultural societal foundations such as the church, media outlets, weight-loss enterprises – from virtually every public venue (Van Dijk’s, 2006, p. 115). Stated differently, ideologies are mandates prescribed by a higher power such as religion, from an authority such as science, or from a powerful government or corporate entity. Ideology can comprise a constellation of beliefs that shape identities and realities (Mumby, 2015). Those whose actions repudiate established norms are punished, often with public ridicule. https://sfd.celiac.com/uploads/monthly_2021_02/bizzaro_comic_jean_duane_1.webp.5ff610ebc20f358715ef3b6db11b4270.webp Figure 1.1 – Gluten Sensitive (Licensed with permission from Comics Kingdom (Bizarro).) Social commentary in the media often ridicules those who avoid gluten. Humor can be a harmful vehicle such as the comic in Figure 1.1. The woman is described to be overly sensitive, not to eating gluten, but having her feelings hurt when gluten is mentioned. Though admittedly funny, this is an example of how mockery can infiltrate the public’s opinion when someone request a safe, gluten-free meal, and how women are overly sensitive to diet. The satire comics presented throughout this book illustrate an ideological hostility to food sensitivities and celiac disease, by way of denigrating barbs that make light of the gluten-free diet, undermining the importance of it, and reinforcing negative and unkind behaviors toward those with celiac disease. Laughing at a gluten-mocking comic implies agreement with the underpinning ideology. Freud (1905, p. 60) points out that wit is a “weapon of attack” to make those being disparaged feel “inferior and powerless.” If we fall outside of the norm with our behavior or beliefs, we are often ridiculed until we fall back in line. The comics illustrate how mockery urges conformity. Those in the “powerful” (non-celiac disease) group see the comics and laugh, whereas even though those with food sensitivities or celiac disease find it humorous, we also may view it as a form of “oppression” and a worrisome jab. Comics reinforce the “groupthink” that happens in families causing anyone who falls out of line to become the ridiculed victim, ousted from the group. Humans coalesce in groups with common beliefs. “Man is by nature a political animal with an innate tendency to form into groups” (Aristotle). Groupthink is a process described originally by Janis (1972) where those empowered in a group share a common belief, whether it is true or not, and then put pressure on those who do not comply with those truths. Those not going along with the group’s ways of thinking are censored, ignored, or ultimately culled unless they comply. Those who share the group’s opinion are unified members of the group. Groupthink evolves through the process of familial storytelling where “truths” are formed and solidified, sometimes becoming self-censored, and self-serving (Janis, 1972). Ideologies are assimilated through conversation that conveys a story that intertwines cultural influences with long-held beliefs (Fisher, 1989). Narrators balance truth with motivations in a cohesive story with significant meaning (White, 1980) and seek reinforcement or agreement from outside culture, religion, and political influential forces (McAdams, Reynolds, Lewis, Patten, & Bowman, 2011). This story telling process to formulate “truths” is integral to family traditions, making meaning of shared life, “doing family” (Langellier & Peterson, 2018, p. 1), and teaching family values (Koenig Kellas & Kranstuber Horstman, 2015). It is in our initial home where we learn fundamentals for what and how to eat, how to cook, how to participate in food-related rituals), as well as gender roles and power structure biases around food (de Certeau, et al., 1998; Pecchoni, Overton, & Thompson, 2008). Groupthink is a way of encouraging belonging to the group or family and creates power structures of “us” and “them.” Divorcing the Family Originally published as an excerpt from this book on 02/13/2020 in The Journal of Gluten Sensitivity I made a rare visit to a cousin a year or so after I was diagnosed with celiac disease. As the youngest child in a large extended family, my cousin was closer to my mother’s age than mine. He took my mother and me on a beautiful ride around Kansas City. I sat in the back seat as they reminisced about their younger lives while passing the places where they experienced them. It came time for lunch and he wanted to take us to a favorite BBQ place in the heart of Independence, MO. I hesitated at his suggestion, and he said, “You aren’t one of those vegematerians, are you?” The coy word he used, and his tone suggested his disapproval of anything out of the ordinary. (In fact, at that time I was a gluten-free vegan!) I said, “I’ll find something.” During lunch, I picked at French fries, pretty sure they were cooked in a dedicated fryer. My mother and cousin exuberantly scarfed the BBQ. My cousin told us about another cousin I hadn’t seen in over 40 years that I apparently look like and reminded him of. He said, “Cousin Sandra is weird. She used to bring her own food to our family dinners.” He was referring to a time, fifty years ago. Back then, members of the extended family met at my grandmother’s house every Sunday to share their views on politics and happenings in the world. It was a close-knit family. Dinner consisted of the main dish (usually pressure cooked ham, green beans, onions, potatoes, bread, and cake for dessert) made by my grandmother, and side dishes brought by my aunts. I was no older than five, and have hazy recollections of these dinners, other than the warmth of family and the familiar smells of home cooking. To be included meant to eat, drink, smoke (it seemed they all did it back then) and converse around that big dining room table. I can imagine that someone daring to bring their own food, spreading it out on their placemat and eating it, while all those other dishes were being passed, might not go over well. As I reflect on my cousin Sandra, it occurs to me that she may have had celiac disease. That was in the early 1960s when it was virtually unheard of in the United States. Why else would she have had to bring her own food to those cherished dinners? A diagnosis prohibiting food of any kind would have been alien and unfathomable to anyone in my family. These are people who lived through the depression after all, where popcorn was the fare for breakfast, lunch, and dinner, if they even had that! Waving away any food, especially foods made by loving hands would have been viewed as an arrogant rejection of their abundance and love. Perhaps she had a mental illness that made her “weird,” or maybe she made unreasonable demands on the family, but I think the most probable reason is that she was just trying to protect her health. Considering how my cousin put it, she was weird only because she brought her own food to the family dinners. In his eyes, she became the “weird one,” ousted by the family because of her audacity to bring her own food to the dinner party. Family lore according to my mother goes on to say that: “She ultimately divorced our family.” Can you do that? It’s a sad story, isn’t it? But I think about it from time to time. I wondered if Sandra was so maligned because the family decided her special needs were so odd that they ostracized her, and she ultimately rejected them. Further, they unified at her expense. Does what happened to her mean that anyone in the younger generation who may have inherited the same disease runs the risk of being shunned? I’d like to think we’re more enlightened now, but thankfully, I’ll never know. I do recall that my mother shushed family when they talked about their illnesses around me, fearing I’d imitate them, I suppose. Her attitude was that you made yourself well, or you made yourself sick, and I think she was careful to protect me from hearing about other people’s illnesses so I didn’t get the idea that I may have them too. She had a Pollyannaish perspective, and thought everyone in her family was perfect, no matter what. That made it very challenging for me to convince her that something wasn’t perfect with me when I was finally diagnosed with celiac disease. In fact, I think she thought I brought it on myself. [I was in my mid-forties when properly diagnosed.] These were her “truths” and likely the “truths” of the collective family. Most of those people around that dinner table fifty years ago have passed on, I imagine happily gathered “around that table in the sky.” In Sandra’s case, family members didn’t understand her dietary restrictions, agreeing she was “weird” and rejecting her for her special needs. She was stereotyped as a prima donna. Cumulative family lore develops through repeated acts of storytelling formulating familial ideologies that perpetuate collective “truths.” These stories form the group’s opinion on given topics. Sometimes these “truths” evolve from just participating in the same activities together, and developing a way of doing things that everyone agrees on, as described with the Sunday dinners above. In their lively discussions, my extended family debated “truths” about politics, news stories, and current events. Similarly, they had a collective opinion about how each other should act while sitting around that table. When someone altered the established norms, like Cousin Sandra, she disturbed rituals, and rocked the family’s agreed-upon “truths.” Her rejection of the foods required the family to rewrite their collective story. This is rarely done on a conscious level, but rather it is done as groupthink. The unspoken “truth” was: you do what we do, eat what we eat, and even smoke what we smoke in order to fit in. Buck that system, and suffer the consequences. In Cousin Sandra’s case, the group determined her choices were a rejection of the others. She refuted the established but unspoken ideologies. As a result, she was rejected and mocked. From their view, if she didn’t participate, she self-selected alienation. Before rejecting her, they likely cajoled her to participate, suggesting a little won’t hurt you, or come on, just a bite. In fact, I can “see” my grandmother holding up a fork with a bite on it, saying, wouldn’t you like just a taste? These urgings are attempts to include rather than exclude. What they really are saying is: you don’t want to be rejected by the family by refusing our norms… come on, just have a little so you can stay a part of our group. That is actually a compassionate message. But we don’t “hear” it that way when we’ve deemed the food being offered to us as poison, and when we feel our needs are not being honored or understood. I don’t think anyone in my family ever intended to bully Cousin Sandra out of the group, It just happened because of their rigid policies on how we ought to act perpetuating the ideology: Think like us, and belong. Sandra’s response could have been, “I love all of you, but not enough to eat your food.” I doubt anyone ever talked openly about it because they lacked the tools and skill to broach a constructive conversation. Liza (#68) reflected on when she first sat down to her future mother-in-law’s table: My fiancé and I traveled to my future in-law’s home so we could meet each other. I sat down to the dinner table. There were foods I was unfamiliar with – a whole fish cooked complete with the eyes, some pickles that smelled odd to me, some ultra sweet cakes, cold cuts, cheese, and boiled eggs. Though I was hungry, all of the foods were unappetizing to me. Really, I became nauseated and I knew that if I didn’t eat the foods my mother-in-law prepared for that first meal, she would feel that I was rejecting her. I forced myself to eat it, but still get chills when I think about that fish looking at me from the platter. Liza conveyed that she wanted to make a good impression on her future parents-in-law, and she knew that not eating the food on the bountiful table was not acceptable. She wanted to fit in, but the food was unappetizing to her. She said that in the future she offered to bring a dish she liked to share at the family meals. Food is so integral to our social existence that forsaking the foods made by loving hands implies a repudiation of those hands, and the people who share it. Breaking bread around the dinner table is a way that people bond. Not taking that bread, or accepting that cup of tea, or eating what everyone else eats, is viewed as a silent form of rejection. This is why having gluten sensitivities causes so many social issues, and is one of the topics in my book. People I surveyed and interviewed told me many stories like the one above. As I reflected on what people said, I realized that the heart of the problem is that we do not have language to talk about these things. If we could say, “I’m not rejecting any of you by not sharing your food. I have a disease that prevents me from eating it, and I still want to sit at this table and be a part of the conversation.” We just don’t seem to be able to have these candid conversations. But by identifying these flawed social norms, we can work to change them, so people rejecting food served around the extended family dinner table can be included, loved, and un-judged for their choices. The first step is to identify these long held “truths,” put words to them, and discuss them openly, rather than living with unstated dysfunctional consensual rules that cause people who defy them to be alienated. Ideologies in Culture In this book, I explore how dominant beliefs drive behavior patterns of commensality (the act of socially sharing food). Ideologies are complex, with many activated at the same time around behavior, such as rules of etiquette, and acceptable religious practices. When on the powerful side of the ideology, life is natural and normal and social interactions are smooth. However, when on the oppressive end, a person can be subject to scrutiny or even punishment until they conform to expectations. This is particularly true of practices and beliefs surrounding food. Traditional foods and preparation practices are disrupted when dietary restrictions are expressed, deviating from expectations and requiring adjustments in beliefs as new narratives emerge (Bochner, et al., 1997). Food is often the focal point for ritual, ceremony, and everyday life. When considering ideologies concerning food practices, it all comes down to expectations. These maxims drive behavior patterns and set social standards that govern acceptable social behavior, rituals for traditional ceremonies, and practices to assure health and welfare. Dogma related to gluten or gluten-containing foods is deeply coded in ideology such as you are what you eat and gluten-free is a fad. This means they are a system of ideas and principles that are taken as natural and normal, implemented without thought. These “truths” put individuals on the defense when communicating the severity of their food allergies or autoimmune reactions, because they simply don’t serve us anymore. Ideologies diminish the seriousness of food sensitivities in nearly every social setting. Ideological Conundrums Therein lies the rub. People who are diagnosed with celiac disease or gluten sensitivities are faced with the need to redefine “truth,” as they learn about the extent of their sensitivities and reactions to various foods. These new “truths” must be teased out and tested by the individual with celiac disease or food sensitivities until firmly believed, and then communicated and hopefully accepted by his or her peers. Cousin Sandra’s attempt and reaction illustrates how this testing can play out, for better or worse. Participants in the interviews discussed this book share their experiences while trying out new “truths” in various venues. Many shared that it was a tricky proposition, requiring them to learn more about themselves, how they handle conflict, and how they co-exist with loved ones. If a person is diagnosed with diabetes, they face having to make diet and lifestyle changes, but they don’t get mocked and ridiculed by society. People with diabetes are often treated with more compassion and understanding. Similar to celiac disease, diabetes is a genetic disability that requires constant dietary vigilance and daily management. An Internet search on “diabetes fad” versus “gluten fad” reveals that diabetes is not considered a fad and is taken significantly more seriously than celiac disease. Whereas the Internet search on “gluten fad” yielded multiple pages of hits. Perhaps diabetes is not considered a fad because doctors regularly test for it as part of an annual check-up, and because approximately 22 million Americans have it (Statistica 2016b), compared to only one million people diagnosed with celiac disease (Fasano, et al., 2003). Those avoiding gluten face cultural, gluten-centric forces that make “being gluten free” very challenging. As truth is redefined, the individual with celiac disease or food sensitivities undergoes an identity transformation. The book examines three themes: ideological drivers related to food and gluten, familial adaptations or non-adaptive responses, and identity transformation with disease. First, we’ll uncover what causes ideologies to form by examining governmental regulations, religious beliefs, etiquette practices, media, and advertising to see how they define our gluten centric society. Next we’ll look at how ideologies affect family and friend social interactions. One chapter attempts to “rewrite” the script with our newly acquired knowledge of dysfunctional ideologies. We’ll check in with individuals from the study to learn how they handle these newly adapted “truths” and how they shifted their thought process to positively transform their lives. Finally, I’ll share the wealth of information gleaned from the interviews, discuss the American Disabilities Act (ADA), and end with “where do we go from here.” In future chapters, I’ll explain the notion of ideologies in more detail, but for now, please understand that this “shift” in thinking redefining long-established “truths” is a fundamental transition for individuals determined to remain gluten-free. The next chapters define and discuss ideological influencers which I term: reluctant tolerance, gluten-doubt, able-body bias, “sorta scientific,” I-Know-Best, diet discretion, exclusionary etiquette, absence of agency, sacred bread, dietary discretion, sexist scrutiny, size surveillance, living by the numbers, and yours, not mine as they relate to food and gluten referring to taken-for-granted “truths” that inform guide daily life when interacting in rituals with others. These ideologies stand between living with celiac disease with grace versus living with strife and angst. Identifying them and offering language to define them is the first step to navigating the gluten-free lifestyle gracefully. Discussion Questions for Forum How do your “truths” about gluten sensitivity differ from the “truths” of your family and friends? How do those differences in “truth” affect your social encounters with your family and friends? 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West (Eds.), Sage Handbook of Family Communication (pp. 306-319). Thousand Oaks, CA: Sage Publications, Inc. Statista (2018b). The rise of the gluten free diet: Percent of Americans on gluten-free diet with/without celiac disease. Retrieved from https://www-statista-com.du.idm.oclc.org/chart/7639/the-rise-of-the-gluten-free-diet/. Statista, (2016) Sales of the leading brands of antacid tablets in the United States in 2016. Retrieved from https://www.statista.com/statistics/737978/us-sales-of-antacid-tablet-brands/ Uhde, M., Ajamian, M., Caio. G., DeGiorgio, R., Indart, A., Green, P., Verna, E. Volta, U., & Alaedini, A. (2016). Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease. Gut, 65, 1930-1937. doi: 10.1136/gutjrl-2016-211964 Van Dijk, T.A. (2006). Ideology and discourse analysis. Journal of Political Ideologies 11(2), 115–140, doi:10.1080/13569310600687908 Wangen, S. (2009). Healthier without wheat. Seattle, WA: Innate Health Publishing. White, H. (1980). The value of narrativity in the representation of reality. Critical Inquiry 7(1), 5-27. No doi. A Note on the Participants Throughout the document, names of interview participants are noted with pseudo-names and their corresponding respondent number. Go to Gluten-Centric Culture: The Commensality Conundrum - Chapter 2 - Ideologies In Our Gluten-Centric Society
  12. Celiac.com 04/26/2021 - Doctors are still figuring the best way to tell celiac disease from non-celiac wheat or gluten sensitivity. A team of researchers recently assessed some key differences between celiac disease and non-celiac wheat or gluten sensitivity. The research team included A. Rej, I. Aziz, and D.S. Sanders. They are variously affiliated with the Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield, UK; and the Department of Infection, Immunity and Cardiovascular Disease, Academic Unit of Gastroenterology, University of Sheffield, Sheffield, UK Celiac disease and non-celiac wheat or gluten sensitivity (NCWS/NCGS) are both common gluten‐related disorders, with similar presentations. Because both conditions can present with gastrointestinal and extra-intestinal manifestations, it can be difficult for doctors to tell them apart. Around 7% of individuals self‐reporting symptoms in relation to gluten ingestion have celiac disease. That's a significant number. For this reason, it is important that patients undergo a thorough workup to assess for the diagnosis, including celiac serology, as well as the exclusion of classic wheat allergy. Celiac disease is diagnosed by assessing serology and histology, but there are no clear biomarkers for the diagnosis of NCGS. Complicated celiac cases should be referred to a specialist, since even with recent developments in noninvasive celiac screening, histological assessment via duodenal biopsy remains the gold standard. Both conditions are treated with a gluten‐free diet, but the length and strictness of the gluten-free diet regime needed to properly treat NCGS is unclear. Following a GFD can be challenging for both celiacs and NCWS/NCGS sufferers, alike. While wheat/gluten is a known trigger for symptom generation in NCGS, it is unclear which components of wheat trigger symptoms in this group, and additional research required to understand the development of the condition. Their paper on the subject, titled "Coeliac disease and non-coeliac wheat or gluten sensitivity," offers a detailed and comprehensive discussion of the two conditions. Read the full paper at the Journal of Internal Medicine (PAYWALL)
  13. Celiac.com 05/15/2017 - For all the talk of studies touting evidence for non-celiac gluten sensitivity, the actual data don't stack up very well, according to an recent assessment by two researchers, whose results appear in Clinical Gastroenterology and Hepatology. In an effort to determine the accuracy of using a double-blind, placebo-controlled study to confirm diagnosis of non-celiac gluten sensitivity in patients who respond to a gluten-free diet, researchers Javier Molina-Infante, and Antonio Carroccio recently set out to assess data on a series of such studies. Both researchers are affiliated with the Department of Gastroenterology, Hospital Universitario San Pedro de Alcantara in Caceres, Spain. For their study, the pair analyzed data from 10 separate double-blind, placebo-controlled, gluten-challenge trials on a total of 1,312 adults. The available studies varied significantly in many ways. The duration of the gluten challenge, for example, varied from 1 day to 6 weeks. The daily doses for those gluten challenges varied from 2 grams to 52 grams, with 3 studies administering 8 grams or less each day. The composition of the gluten-free placebo also varied considerably between tests; including variation by gluten-free product type, and levels of xylose, whey protein, rice, or corn starch containing fermentable carbohydrates. Most of the studies did find gluten challenge to significantly increase symptom scores compared with placebo. However, out of 231 NCGS patients, only 38 patients (16%) showed gluten-specific symptoms. Moreover, nearly half (40%) of these patients showed similar or increased symptoms in response to placebo; something researchers term a 'nocebo' effect. That leaves just 6 or 7 patients out of 231 showing gluten-specific symptoms. The researchers also point to heterogeneity and to potential methodology flaws in gluten challenge studies. They also present powerful questions about gluten as the trigger for symptoms in most patients with presumptive NCGS. Lastly, they highlight the importance of the nocebo effect in these types of studies. These results certainly invite more careful, rigorous studies on the matter, and challenge researchers to provide solid data from well-crafted double-blind placebo controlled studies. Basically, what little evidence we thought we had to support the existence of non-celiac gluten sensitivity has been shown to be thin at best. Until solid evidence arrives, the status of non-celiac gluten sensitivity will remain open to question and doubt by both researchers and potential sufferers. Source: Clin Gastroenterol Hepatol. 2017;15(3):339-348.
  14. Celiac.com 04/20/2021 - Non-celiac gluten sensitivity (NCGS) is marked by intestinal and extraintestinal symptoms triggered by gluten-containing foods, but with no celiac disease or wheat allergy. There are currently no known biomarkers to diagnose non-celiac gluten sensitivity, and the gold standard double-blind placebo-controlled gluten challenge is clinically impractical. A team of researchers recently set out to investigate the role of serum zonulin as a diagnostic biomarker of NCGS and to develop a diagnostic algorithm. The research team included Maria Raffaella Barbaro, Cesare Cremon, Antonio Maria Morselli-Labate, Antonio Di Sabatino, Paolo Giuffrida, Gino Roberto Corazza, Michele Di Stefano, Giacomo Caio, Giovanni Latella, Carolina Ciacci, Daniele Fuschi, Marianna Mastroroberto, Lara Bellacosa, Vincenzo Stanghellini, Umberto Volta, and Giovanni Barbara. They are variously affiliated with the Department of Medical and Surgical Sciences, University of Bologna, Bologna, Italy, the First Department of Internal Medicine, San Matteo Hospital Foundation, University of Pavia, Italy; the Department of Clinical Medicine Public Health Life Sciences and Environment, University of L'Aquila, Italy; the Department of Medicine, Surgery, and Dentistry Scuola Medica Salernitana, University of Salerno, Salerno, Italy, and the Department of Medical and Surgical Sciences, University of Bologna, Italy. For their multi-center study, the team enrolled 86 patients with either self-reported or double-blind confirmed non-celiac gluten sensitivity, 59 patients with diarrhea-predominant IBS (IBS-D), 15 patients with celiac disease, and 25 asymptomatic control subjects. The team assessed Zonulin serum levels, and calculated the associated diagnostic power. They recorded any clinical and symptomatic data. They also assessed the effect of diet on zonulin levels in a subgroup of patients with non-celiac gluten sensitivity. Compared with asymptomatic control subjects, the non-celiac gluten sensitivity patients, regardless of diagnosis modality, and celiac patients showed substantially increased levels of zonulin, as did both non-celiac gluten sensitivity and celiac patients, compared with IBS-D patients. Self-reported non-celiac gluten sensitivity showed increased zonulin levels compared with double-blind confirmed and not-confirmed non-celiac gluten sensitivity. There's been a lot of talk about gluten-free diets benefiting non-celiac gluten sensitivity patients, but this study found that six-month wheat avoidance significantly reduced zonulin levels only in non-celiac gluten sensitivity patients with positive HLA-DQ2/8. Wheat withdrawal was associated with reduced zonulin levels only in non-celiac gluten sensitivity with the HLA genotype. Zonulin levels were 81% accurate in distinguishing non-celiac gluten sensitivity from IBS-D. By excluding celiac disease, a diagnostic algorithm combining zonulin levels, symptoms and gender increased that accuracy to 89%. Certainly finding a reliable new biomarker for non-celiac gluten sensitivity would be a big deal. This study shows that zonulin can be an accurate diagnostic biomarker for non-celiac gluten sensitivity. When combined with demographic and clinical data, Zonulin levels can differentiate non-celiac gluten sensitivity from IBS-D with high accuracy. Expect more investigation into the use of zonulin levels as an accurate diagnostic biomarker for non-celiac gluten sensitivity. If it pans out, expect to see it developed for clinical practice, though that may take some time. Source: Gut, 2020 Nov;69(11):1966-1974.
  15. Celiac.com 02/01/2021 - Non-Celiac Gluten Sensitivity (NCGS) is poorly understood, particularly in terms of its neurological effects. A team of researchers looking into the matter first conducted a prospective postal survey to investigate its neurological presentation and symptom course. Based on the results of the survey, they conducted a brain MRI study to follow-up, and to note potential diagnostic biomarkers for future research. The research team included Iain D. Croall, Nigel Hoggard, Imran Aziz, Marios Hadjivassiliou, and David S. Sanders. They are variously affiliated with the Department of Infection, Immunity & Cardiovascular Disease, University of Sheffield/INSIGENO, Sheffield, United Kingdom; the Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield, United Kingdom; and the Academic Departments of Neurosciences and Neuroradiology, Sheffield Teaching Hospitals NHS Trust, Sheffield, United Kingdom. The team recruited 125 patients with NCGS from a clinical center. Each patient completed a prospective postal questionnaire summarizing the symptoms, their severity and their course. The team used Chi-squared analysis to compare onset time to data from 224 celiac disease patients from the same centre. Five gluten-free respondents who self-reported brain fog then received MR brain imaging and questionnaires, both before and after a gluten challenge. The team recorded this “baseline” data, and looked for abnormalities. They then compared symptom severity and cerebral blood flow (CBF) both before and after the gluten challenge. Neurological symptoms included headaches in more than half of patients, brain fog in just under half, balance issues in about one-third of patients, and tingling in about 20%. Symptoms typically began with 90 minutes, and resolved within 48 hours. The pattern of symptom onset was similar to that seen in celiac patients. Extra-intestinal symptoms worsened by nearly 40% during a typical reaction. The combined survey and brain imaging analysis showed that non-trivial neurological symptoms are common, and may be studied within 2 hours following gluten ingestion. The team suggests that further brain imaging studies may help reveal physiological damage, and the physiological response to gluten. The researchers stress the need for diagnostic biomarkers for NCGS, and notes that there is limited research showing AGA is raised in NCGS patients compared to the general population This first-of-a-kind neuro-imaging study revealed numerous clinical variables, which may be helpful for further studying the pathophysiology of NCGS. The positivity rate in patients for this study was about 18%, compared to just under 13% for healthy volunteers, which is an insignificant difference. This generally supports previous literature showing that AGA is not a good way to diagnose typical NCGS. A better understanding of how gliadin positivity interacts with neurological outcomes may be helpful, as research indicates that these antibodies may harm the brain. Read more at PLOS.org
  16. Celiac.com 09/14/2020 - Researchers understand that celiac disease is marked by robust B cell and antibody responses to gluten, and to the transglutaminase 2 (TG2) autoantigen. In contrast, non-celiac gluten sensitivity (NCGS) is marked by the absence of the physical or testable features of celiac disease. Beyond that, researchers don't know much about NCGS. There are no established biomarkers yet for NCGS, but research shows a state of systemic immune activation together with a compromised intestinal epithelium. Researchers have been homing in on IgG antibody response to gluten as a means of distinguishing non-celiac gluten sensitivity (NCGS ) from celiac disease. A team of researchers recently set out to observed differences in the IgG subclass distribution and relationship with FABP2 release in NCGS versus celiac disease. The team's recent paper describes a contrast in the IgG subclass distribution and relationship with FABP2 release in NCGS versus celiac disease, which, they say, demonstrates differences in the evolution and disease relevance of B cell immune responses in each condition. Pathways involved in this process may make tempting targets for molecular therapy focused on disrupting or blocking the pathway. The team demonstrated that the anti-gluten IgG antibody in NCGS differs substantially from celiac disease in subclass distribution, and in terms of intestinal cell damage. The data suggests a sustained primary B cell response to gluten in celiac patients, despite the condition’s chronicity, and a more advanced and less intense immune response to gluten in NCGS. Based on their data, the team is calling for further study of the evolution of gluten-reactive B cell response and subclass switching in celiac disease and NCGS. In addition, they expect information on other aspects of B cell and antibody variability, including affinity, glycosylation profile, and epitope specificity, to improve the understanding of differences in the immune response to gluten, and its relationship with disease pathophysiology, in the two conditions. Coupled with markers described earlier, these aspects of immune response to gluten will likely offer more biomarkers that may help to clarify potential disease subsets with varying mechanisms, prognoses, and therapeutic efficacy. Researchers are making critical progress in distinguishing celiac disease from NCGS. Their efforts could drive breakthroughs in the diagnosis and treatment of both conditions, so their ongoing study is important. Read more in Gastroenterology The research team included Melanie Uhde, PhD, Giacomo Caio, MD, Roberto De Giorgio, MD, Peter H. Green, MD, Umberto Volta, MD, and Armin Alaedini, PhD. They are variously affiliated with the Department of Medicine, Columbia University Medical Center, New York, NY, USA; the Institute of Human Nutrition, Columbia University Medical Center, New York, NY, USA; the Celiac Disease Center, Columbia University Medical Center, New York, NY, USA; the Department of Medical Sciences, University of Ferrara, Arcispedale St. Anna, Ferrara, Italy; the Celiac Disease Center and Mucosal Immunology and Biology Research Center, Massachusetts General Hospital – Harvard Medical School, Boston, MA, USA; the Department of Medical and Surgical Sciences, University of Bologna, Italy; the Department of Medicine, New York Medical College, Valhalla, NY, USA.
  17. 08/03/2020 - New research shows that cytokines, particularly IL-8 and IL-15, could be used as markers to distinguish celiac disease from non-celiac gluten sensitivity (NCGS) and healthy people. Researchers have noted that levels of some inflammatory cytokines rise in people with celiac disease and NCGS, in contrast with healthy subjects. A team of researchers recently set out to create an accurate tool for using cytokines to distinguish healthy patients from those with celiac disease and NCGS. The research team included Fatemeh Masaebi, Mehdi Azizmohammad Looha, Mohammad Rostami-Nejad, Mohamad Amin Pourhoseingholi, Navid Mohseni, Gabriel Samasca, Iulia Lupan, Mostafa Rezaei-Tavirani, and Mohammad Reza Zali. They are variously affiliated with the Department of Biostatistics, Faculty of Paramedical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Gastroenterology and Liver Diseases Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Department of Immunology, Iuliu Hatieganu University of Medicine and Pharmacy Cluj-Napoca, Romania; the Department of Molecular Biology and Biotechnology, BabesBolyai University, Cluj-Napoca, Romania; and the Proteomics Research Center, Faculty of Paramedical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran. The team assessed serum samples from 171 participants, including 110 celiac patients, 46 healthy subjects, and 15 with NCGS. They used commercial ELISA kits to detect levels for cytokines IL-1, IL-6, IL-8, IL-15, and IFN-γ. They applied the ROC curve analysis to establish the best levels for high sensitivity, specificity, positive and negative predictive values of cytokines, as the indicators of celiac disease, non-celiac gluten sensitivity, and healthy controls. In the NCGS group, the AUC values for IL-1, IL-8, and IFN-γ were 71%, 78% and 70%, respectively. IL-15 distinguished the celiac and NCGS groups from control group nearly 83% of the time, the highest overall. Additionally, IL-15 showed nearly 57% specificity, 82% positive predictive value, and 58% negative predictive value. IL-8 had nearly 75% sensitivity, the highest overall, with nearly 74% specificity, nearly 96% positive predictive value, and just over 30% negative predictive value. The team's results show that IL-8 and IL-15 could potentially act as markers for distinguishing celiac disease from the NCGS and healthy controls. The team suggests that the assessment of cytokine levels can be a useful tool for diagnosing celiac disease and NCGS and spotting the difference between the two conditions and healthy control subjects. Read more at: Iran Biomed J. 2020 Jun 1
  18. Celiac.com 07/09/2020 - Refractory functional dyspepsia (RFD) is a condition marked by ongoing symptoms even with medical treatment or H. pylori eradication. A team of researchers recently set out to investigate the presence of gluten-dependent RFD as a clinical presentation of Non-Celiac Gluten Sensitivity (NCGS). The team included Bijan Shahbazkhani, Mohammad M. Fanaeian, Mohammad J. Farahvash, Najmeh Aletaha, Foroogh Alborzi, Luca Elli, Amirhossein Shahbazkhani, Jayran Zebardast, and Mohammad Rostami-Nejad. They are variously associated with Division of Gastroenterology and Liver Diseases, Imam Khomeini Hospital Complex, Tehran University of Medical Sciences, Tehran, Iran; the Division of Gastroenterology and Liver Diseases, Imam Khomeini Hospital Complex, Tehran University of Medical Sciences, Tehran, Iran; the Center for Prevention and Diagnosis of Celiac Disease, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy; the Cognitive Science Special Linguistics, Institute of Cognitive Sciences, Tehran, Iran; and the Gastroenterology and Liver Diseases Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran. For six weeks, the team followed the progress of RFD patients on a gluten-free diet. All patients had been checked and ruled out for celiac disease, wheat allergy and H. pylori infection. The team used visual analogue scales to gauge symptoms. Patients who reported a 30% or better improvement, in at least one symptom after a gluten-free diet, then faced a double-blind placebo controlled gluten challenge. For the study, the research team divided the participants randomly into two groups. They assessed symptoms after the gluten/placebo challenge. They also followed those who responded to a gluten-free diet for another 3 months, to assess the relationship between patient symptoms and gluten consumption. Out the seventy-seven patients with RFD, fifty patients, or 65%, failed to respond to a gluten-free diet. Twenty-seven patients, more than one-third, reported that a gluten-free diet improved their gastrointestinal symptoms. Five patients with RFD, and 14 patients who responded to gluten-free diet, experienced a recurrence of symptoms after blind gluten ingestion, which indicates Non-Celiac Gluten Sensitivity. Symptoms that improved in Non-Celiac Gluten Sensitivity patients on a gluten-free diet include extra-intestinal symptoms, fatigue and weakness, musculo-skeletal pain, and headache. Because of the high rates of Non-Celiac Gluten Sensitivity among RFD patients, the research team advocates the use of a diagnostic/therapeutic roadmap to evaluate the effect of gluten-free diet in patients with RFD. Read more at Sci Rep. 2020; 10: 2401
  19. Celiac.com 03/05/2019 - The mechanics of how celiac disease and gluten-related disorders develop is still poorly understood. In order to shed light on the subject, a team of researchers recently conducted a systematic review of the current epidemiological knowledge of gluten-related disorders. They focused on variations in reported cases and rates of gluten-related disorders in the Asia-Pacific region. The research team included Sara Ashtari, Mohamad Amin Pourhoseingholi, Kamran Rostami, Hamid Asadzadeh Aghdaei, Mohammad Rostami-Nejad, Luca Busani, Mostafa Rezaei Tavirani, and Mohammad Reza Zali. For their reviews, the team searched Medline, PubMed, Scopus, Web of Science and Cochrane database for material published from January 1991 to January 2018. They searched the following MeSH terms and keywords: celiac disease, wheat allergy, non-celiac gluten sensitivity (NCGS), dermatitis herpetiformis and gluten ataxia and the prevalence studies. Each article was cross-referenced with “Asia-Pacific region” and countries in this region such as Australia, New Zealand, India, Pakistan, Turkey, Iran and others. They found a total of 66 suitable studies that chronicled rates of gluten-related disorders in the Asia-Pacific region. They found celiac disease rates of 0.32%-1.41% in healthy children, and 0.05%-1.22% in the adult population, while rates in the high risk population ran as high as 11.8%. Earlier studies have shown few cases of dermatitis herpetiformis and gluten ataxia. Interestingly, even though wheat allergy is uncommon in most Asian-Pacific countries, it’s the most common cause of anaphylaxis. This review emphasizes how little good information we have, and how much we need more and better epidemiological studies to reveal the origins and development of gluten-related disorders, and to better measure their effects upon health care delivery. Read more at: J Gastrointestin Liver Dis, March 2019 Vol. 28 No 1 They are variously affiliated with the Gastroenterology and Liver Diseases Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Departments of Gastroenterology, Milton Keynes Hospital NHS Foundation Trust, Milton Keynes, UK; the Basic and Molecular Epidemiology of Gastrointestinal Disorders Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Department of Infectious Diseases, Istituto Superiore di Sanità, Roma, Italy; and the Proteomics Research Center, Faculty of Paramedical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
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