Jump to content
Frequently Asked Questions About Celiac Disease Read more... ×
  • Sign Up

Search the Community

Showing results for tags 'family'.



More search options

  • Search By Tags

    Type tags separated by commas.
  • Search By Author

Content Type


Forums

  • Diagnosis & Recovery, Related Disorders & Research
    • Calendar of Events
    • Celiac Disease Pre-Diagnosis, Testing & Symptoms
    • Post Diagnosis, Recovery & Treatment of Celiac Disease
    • Related Disorders & Celiac Research
    • Dermatitis Herpetiformis
    • Gluten Sensitivity and Behavior
  • Support & Help
    • Coping with Celiac Disease
    • Parents' Corner
    • Gab/Chat Room
    • Doctors Treating Celiac Disease
    • Teenagers & Young Adults Only
    • Pregnancy
    • Friends and Loved Ones of Celiacs
    • Meeting Room
    • Celiac Disease & Sleep
    • Celiac Support Groups
  • Gluten-Free Lifestyle
    • Gluten-Free Foods, Products, Shopping & Medications
    • Gluten-Free Recipes & Cooking Tips
    • Gluten-Free Restaurants
    • Ingredients & Food Labeling Issues
    • Publications & Publicity
    • Traveling with Celiac Disease
    • Weight Issues & Celiac Disease
    • International Room (Outside USA)
    • Sports and Fitness
  • When A Gluten-Free Diet Just Isn't Enough
    • Food Intolerance & Leaky Gut
    • Super Sensitive People
    • Alternative Diets
  • Forum Technical Assistance
    • Board/Forum Technical Help
  • DFW/Central Texas Celiacs's Events
  • DFW/Central Texas Celiacs's Groups/Organizations in the DFW area

Blogs

There are no results to display.

There are no results to display.

Categories

  • Celiac.com Sponsors
  • Celiac Disease
  • Safe Gluten-Free Food List / Unsafe Foods & Ingredients
  • Gluten-Free Food & Product Reviews
  • Gluten-Free Recipes
    • American & International Foods
    • Gluten-Free Recipes: Biscuits, Rolls & Buns
    • Gluten-Free Recipes: Noodles & Dumplings
    • Gluten-Free Dessert Recipes: Pastries, Cakes, Cookies, etc.
    • Gluten-Free Bread Recipes
    • Gluten-Free Flour Mixes
    • Gluten-Free Kids Recipes
    • Gluten-Free Recipes: Snacks & Appetizers
    • Gluten-Free Muffin Recipes
    • Gluten-Free Pancake Recipes
    • Gluten-Free Pizza Recipes
    • Gluten-Free Recipes: Soups, Sauces, Dressings & Chowders
    • Gluten-Free Recipes: Cooking Tips
    • Gluten-Free Scone Recipes
    • Gluten-Free Waffle Recipes
  • Celiac Disease Diagnosis, Testing & Treatment
  • Miscellaneous Information on Celiac Disease
    • Additional Celiac Disease Concerns
    • Celiac Disease Research Projects, Fundraising, Epidemiology, Etc.
    • Conferences, Publicity, Pregnancy, Church, Bread Machines, Distillation & Beer
    • Gluten-Free Diet, Celiac Disease & Codex Alimentarius Wheat Starch
    • Gluten-Free Food Ingredient Labeling Regulations
    • Celiac.com Podcast Edition
  • Celiac Disease & Gluten Intolerance Research
  • Celiac Disease & Related Diseases and Disorders
    • Lists of Diseases and Disorders Associated with Celiac Disease
    • Addison's Disease and Celiac Disease
    • Anemia and Celiac Disease
    • Anorexia Nervosa, Bulimia and Celiac Disease
    • Arthritis and Celiac Disease
    • Asthma and Celiac Disease
    • Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
    • Attention Deficit Disorder and Celiac Disease
    • Autism and Celiac Disease
    • Bacterial Overgrowth and Celiac Disease
    • Cancer, Lymphoma and Celiac Disease
    • Candida Albicans and Celiac Disease
    • Canker Sores (Aphthous Stomatitis) & Celiac Disease
    • Casein / Cows Milk Intolerance and Celiac Disease
    • Chronic Fatigue Syndrome and Celiac Disease
    • Cognitive Impairment and Celiac Disease
    • Crohn's Disease and Celiac Disease
    • Depression and Celiac Disease
    • Dermatitis Herpetiformis: Skin Condition Associated with Celiac Disease
    • Diabetes and Celiac Disease
    • Down Syndrome and Celiac Disease
    • Dyspepsia, Acid Reflux and Celiac Disease
    • Epilepsy and Celiac Disease
    • Eye Problems, Cataract and Celiac Disease
    • Fertility, Pregnancy, Miscarriage and Celiac Disease
    • Fibromyalgia and Celiac Disease
    • Flatulence (Gas) and Celiac Disease
    • Gall Bladder Disease and Celiac Disease
    • Gastrointestinal Bleeding and Celiac Disease
    • Geographic Tongue (Glossitis) and Celiac Disease
    • Growth Hormone Deficiency and Celiac Disease
    • Heart Failure and Celiac Disease
    • Infertility, Impotency and Celiac Disease
    • Inflammatory Bowel Disease and Celiac Disease
    • Intestinal Permeability and Celiac Disease
    • Irritable Bowel Syndrome and Celiac Disease
    • Kidney Disease and Celiac Disease
    • Liver Disease and Celiac Disease
    • Lupus and Celiac Disease
    • Malnutrition, Body Mass Index and Celiac Disease
    • Migraine Headaches and Celiac Disease
    • Multiple Sclerosis and Celiac Disease
    • Myasthenia Gravis Celiac Disease
    • Obesity, Overweight & Celiac Disease
    • Osteoporosis, Osteomalacia, Bone Density and Celiac Disease
    • Psoriasis and Celiac Disease
    • Refractory Celiac Disease & Collagenous Sprue
    • Sarcoidosis and Celiac Disease
    • Scleroderma and Celiac Disease
    • Schizophrenia / Mental Problems and Celiac Disease
    • Sepsis and Celiac Disease
    • Sjogrens Syndrome and Celiac Disease
    • Skin Problems and Celiac Disease
    • Sleep Disorders and Celiac Disease
    • Thrombocytopenic Purpura and Celiac Disease
    • Thyroid & Pancreatic Disorders and Celiac Disease
    • Tuberculosis and Celiac Disease
  • The Origins of Celiac Disease
  • Gluten-Free Grains and Flours
  • Oats and Celiac Disease: Are They Gluten-Free?
  • Frequently Asked Questions
  • Journal of Gluten Sensitivity
    • Winter 2019 Issue
    • Autumn 2018 Issue
    • Summer 2018 Issue
    • Spring 2018 Issue
    • Winter 2018 Issue
    • Autumn 2017 Issue
    • Summer 2017 Issue
    • Spring 2017 Issue
    • Winter 2017 Issue
    • Autumn 2016 Issue
    • Summer 2016 Issue
    • Spring 2016 Issue
    • Winter 2016 Issue
    • Autumn 2015 Issue
    • Summer 2015 Issue
    • Spring 2015 Issue
    • Winter 2015 Issue
    • Autumn 2014 Issue
    • Summer 2014 Issue
    • Spring 2014 Issue
    • Winter 2014 Issue
    • Autumn 2013 Issue
    • Summer 2013 Issue
    • Spring 2013 Issue
    • Winter 2013 Issue
    • Autumn 2012 Issue
    • Summer 2012 Issue
    • Spring 2012 Issue
    • Winter 2012 Issue
    • Autumn 2011 Issue
    • Summer 2011 Issue
    • Spring 2006 Issue
    • Summer 2005 Issue
  • Celiac Disease Support Groups
    • United States of America: Celiac Disease Support Groups and Organizations
    • Outside the USA: Celiac Disease Support Groups and Contacts
  • Celiac Disease Doctor Listing
  • Kids and Celiac Disease
  • Gluten-Free Travel
  • Gluten-Free Cooking
  • Gluten-Free
  • Allergy vs. Intolerance
  • Tax Deductions for Gluten-Free Food
  • Gluten-Free Newsletters & Magazines
  • Gluten-Free & Celiac Disease Links
  • History of Celiac.com
    • History of Celiac.com Updates Through October 2007
    • Your E-mail in Support of Celiac.com 1996 to 2006

Find results in...

Find results that contain...


Date Created

  • Start

    End


Last Updated

  • Start

    End


Filter by number of...

Joined

  • Start

    End


Group


AIM


MSN


Website URL


ICQ


Yahoo


Jabber


Skype


Interests


Location

Found 25 results

  1. Sorry for the long post, I've been dealing with this forever and want to figure it out! Hi, I just got tested for celiac (blood test at a family practice (USA)) without knowing that I had to have been eating gluten regularly for it to show anything. I read forums here that said so, so I called the doctor's office before my test to ask if that was true, and they put me on with a nurse that said "I've never heard of that, but let me check the test we have....Oh, yep, it says to eat gluten. So just eat some bread before you come today." Seemed doubtful. I ended up NOT eating any gluten, and I've been actively avoiding wheat for at least 3 years (I noticed a gluten intolerance when I started college, my dad and uncle and 2 cousins can't eat it either). I was accidentally glutened with the tiniest bit of fajita seasoning from a restaurant 3 weeks prior to my blood test, but that's it. I didn't want to make myself sick with bread after reading that the blood test really only works if you've been eating it for weeks/months, so I went and got tested with basically non gluten in my system at all. The test itself said "negative." But I've attached a screenshot of my levels. After talking with the nurses on the phone twice, I'm convinced they know nothing about it. My antibodies were low/normal, probably because I haven't eaten gluten in years. (I sometimes drink beer made with barley instead of wheat because it doesn't give me horrible stomach cramps, but I hadn't had any in probably a month). The one thing that seemed "high" to me for someone who hasn't eaten wheat in years was the tTG IGA (I have no idea what that means). Mine said 7.2 U/mL (again, whatever that means). This family practice test says that a normal level is under 15 U/mL, but all my other levels are less than 1. After some research, I came across what "normal" levels should look like and Mayo Clinic suggested under 4.0 U/mL is negative for celiac (Source) [4.0-10 is a "weak positive"]. Like I said, I'm not very trusting that the practice I went to knows anything about celiac. I know if I want a diagnosis I should go to some specialist. But I really don't want to get put under just to be told "yep, do exactly what you've doing for years, avoiding gluten." So, I decided to sort of "self-diagnose" myself with celiac JUST to make myself be extra careful, you know, just in case my intestines are damaged whenever I get cross-contaminated food. My question is: does anyone else think it's possible I have celiac? Or am I being nuts? Recap & Symptoms: In 2014 I could barely eat anything in my house because I would be sick with horrible stomach cramps and constipation that would make me cry and have to stay home the next day. I lost weight then. Someone suggested going gluten-free, and I knew my dad was doing that because he had a couple passing-out episodes and similar gut pain. My uncle (dad's brother) also has a sever intolerance to gluten, like it gets him hospitalized because of malnutrition and cramping (I'm pretty sure he has celiac, but he's too stubborn to get tested). I tried avoiding gluten for a week and felt way better. Now I've been gluten free for years. Like I said before, though, I am not careful with barley and rye. Malt hurts me a lot, and when I take one bite of, say, a donut thinking it'll be worth it (I miss donuts..) it NEVER is. I'm out for two days after that. If I get glutened, I experience: fatigue, horrible cramps, gas (that won't pass), constipation (for days), foggy head, itchy skin, irritability, and my appetite fluctuates like crazy-- one minute I'm so full I can't think of food, another I'm starving.
  2. A recent chapter of Generation gluten-free started up in Dallas, Here is a info thing from their site and a link to their FB group. Generation gluten-free, a program of the Gluten Intolerance Group (GIG), is designed to build confidence in kids, teens, and young adults, and help develop them into the future leaders of our gluten-free community. Our goal is to provide safe environments where kids don’t have to worry about what they are going to eat and can just enjoy the fun that comes with being a kid. We want to provide families with a resource through which they can have their questions answered and where they can feel more involved with others in their community. Most importantly, we want to create a program that all age groups will embrace and feel happy to say that they are members of Generation gluten-free. Generation gluten-free Groups around the nation have curriculums designed especially for kids, teens, and young adults, addressing the needs and challenges that they face in their every day lives. These groups are using fundraisers, special events, and family nights to raise awareness and promote the gluten-free lifestyle to their communities. We will be building on this support foundation and expanding our outreach even more through the creation of leadership opportunities, adult mentorships, and gluten-free education to our schools. In addition, Generation gluten-free will be working with summer camps across the nation to provide gluten-free kids the chance to have a week of adventure without thinking about the safety of their food. Be sure to visit our Camp page to find out more about these opportunities and to learn more about the possibility of obtaining a camp scholarship from GIG. https://www.facebook.com/GenerationGFDallas/
  3. I want a great sentence to use with grandmas, neighbors, waitstaff... I want it to be memorable and not too overly dramatic. I also would like it to be slightly accurate. Here is my current scenario: new friend: What is Celiac? me: It means my body responds to gluten the way yours might respond to rat poinon. new friend got it and understood the restrictions and complications involved in planning a neighborhood potluck with me. Please send me your best one-liner that I or anyone else can use when needing a quick explanation. Or, let me know if mine is best???
  4. Kristi626

    Holiday Family Travel

    My 13yo son was diagnosed by biopsy in August of this year. We have not had to travel since he has been diagnosed. I am concerned with holiday travel coming up. My husband wants to visit his parents this year for our kids Christmas break but, I'm concerned about my son getting "glutened" while we stay at my in-laws. I already know that they will think I'm being irrational if I insist on bringing a toaster and cookware for my son's meal prep. They won't understand about him not being able to use the communal butter dish or serving utensils. Fortunately, my sister-in-law says that there are gluten-free options at their small grocery store. But, I'm worried about what to do, say and generally how to handle this. I don't want to ruin my family's vacation. I want to show my son that his life doesn't have to stop because he has Celiac. I want him to still be able to travel and visit his friends and family! Any good advice out there as to how to handle this with my in-laws and how best to ensure my son doesn't get glutened without offending anyone?
  5. until
    The GFAF Expos are the greatest events on earth for those living a gluten-free or allergen-friendly lifestyle! Sample and purchase hundreds of products, meet with local and national brands, receive coupons, and attend informative presentations by top-notch speakers. While all products at the Expo are gluten free, many are also free from the top 8 allergens. There is also a dedicated nut-free section. The Expos are a fun, family-friendly, educational and safe place made just for you! What do you get with your Expo Ticket? Entry into the 100+ booth vendor fair Valuable coupons at the vendor booths Samples from the vendors Discounted products available for purchase Informative classes related to the gluten and allergen-free lifestyle Free reusable bag to carry your goodies The chance to meet your favorite vendors, authors and bloggers Get 20% off with code ADVANCE For more information, visit www.gfafexpo.com
  6. Hi everyone! I really need some advice on how to handle a situation. My niece was diagnosed celiac disease, by blood test, 3 months ago. I was diagnosed 2 months ago. The past 2 months have wreaked havoc on my emotions and coping with being gluten-free now. My niece's mother, my older sis, has recognized that she has at least a gluten intolerance. My sis went to the dr today to have the blood test done after describing her symptoms to the dr, he suggested that she do a gluten challenge, well she already has and has suffered since going with out gluten then starting back. So without a blood test or biopsy, her dr diagnosed her with celiac disease. Her dr also described to her "well now you are allergic to gluten start listing that on your paperwork." But celiac disease is not a gluten allergy. My sister today said, "well the number of celiacs in the family is growing." But do we really know that???I don't know, how to put it exactly into words, celiac disease still scares me. I would do anything to not have it, it's changed my life completely... and without any diagnostic tests she is now diagnosed... like am I frustrated for no reason? Am I being stupid? I feel like she could have nonceliac gluten sensitivity... or maybe she does have celiac... it just makes me uncomfortable... maybe because I didn't rest until I got my test and my results were in. I didn't just accept that I had it. I had to see the blood test. Maybe I just need a hug. I'm not sure. any words of wisdom or kind thoughts are appreciated. -Silky
  7. Hello everyone, My name is Catherine Spy and I am a candidate for a Master's degree in health communication at Emerson College. For my thesis project, I am working with Beyond Celiac to develop materials that will help celiac disease support group leaders educate their group about the importance of encouraging family members to get tested for celiac disease and how to have successful conversations about testing with family members. We are looking for past and/or present celiac disease support group leaders to take a short, confidential survey that will help us understand the experience of being a support group leader and how we may best support you. If you are willing to participate in this survey, please click the following link: https://tufts.qualtrics.com/jfe/form/SV_bJzzPHgydGzfFFX If you know any support group leaders that you think would like to take this survey, please feel free to share this post or the survey link with them. Thank you in advance for your time and insights. Please do not hesitate to contact me at catherine_spy@emerson.edu with any questions or concerns about this survey or project.
  8. Celiac.com 09/30/2016 - This week in celebrity gluten-free news, Kourtney Kardashian has put her family on a gluten-free, dairy-free diet. The 37-year-old reality star explained on her website how she made the diet change after undergoing muscle testing, an alternative medicine technique that has been widely discredited by science and medical professionals. The reality star wrote: "I don't think everyone needs to eat this way, but we had muscle testing done, which showed we all have sensitivities to corn, gluten and dairy." Kourtney Kardashian says she has "noticed a great positive change in behavior" when her kids stick to a gluten- and dairy-free diet. She even offers her own personal tip for maintaining gluten-free harmony: Bring your own cupcakes to birthday parties, so gluten-free kids can still enjoy the food and fun. No word on whether sister Kim and her partner Kanye West or their kids will be joining the gluten-free push anytime soon. Stay tuned for updates on these and other related stories of gluten-free celebrities, both with and without celiac disease and/or related conditions. Read more at DailyMail.co.uk
  9. Celiac.com 11/15/2016 - Do you know someone who has lived with celiac disease for over eighty years? Someone who lived on nothing but mashed bananas for a year? Someone who continued to eat gluten for over 30 years because doctors didn't know how to treat a celiac diagnosis? Someone who experienced serious physical, emotional, and family challenges as a result? Well, I met such an individual at the International Celiac Symposium in Chicago in the fall of 2013. Clara (a pseudonym) attended my poster session, The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. As she stood before my poster with tears in her eyes she began to say, "This is me. This is me." Through a brief conversation then, and several lengthy telephone interviews that followed, she shared her incredible story with me and gave me permission to share it with you. Clara was born in 1933 on a citrus ranch in California and was the youngest of five children. She was very sick as a baby with what her family thought was a "terrible case of the flu." She lost muscle tone, had wrinkly skin, and some mornings she didn't move or even open her eyelids without the help of her mother. She looked malnourished and had a distended stomach. When she was two, her parents took her to Dr. Victor E. Stork, but he was not sure what the problem might be. A few weeks later, the doctor attended a conference where he described Clara's symptoms. He learned of another child with similar symptoms who had been diagnosed with celiac disease and fed nothing but mashed bananas. After Dr. Stork informed Clara's parents, Clara's father purchased a big hook and drove to the Long Beach docks to buy bananas. He hung bunches of bananas on their back porch to ripen and she was fed nothing but mashed bananas for over a year. What started as half a teaspoon at a time quickly grew until she was eating many bananas each day. This part of Clara's story greatly intrigued me, as I had just read the research of Sidney Haas. In the 1920s Hass successfully treated eight children who were "anorexic" from celiac disease with the banana diet while untreated children did not survive (Guandalini, 2007). Growing up, Clara was a happy child but had no appetite and didn't enjoy food. She was very small for her age and, at times, was made to stay at the dinner table until she ate everything on her plate. Clara's mother, a practical nurse, thought she might be allergic to fat. The family kept a quarter of a beef in a freezer locker 25 miles away and her mother scraped the fat off the beef before giving it to Clara. She was also made to finish her breakfast, typically oatmeal, toast, and orange juice, before going to school in the morning. Clara routinely had vomiting and diarrhea each morning, and didn't understand why this didn't happen to other children. She missed school often because she had abdominal discomfort and was weak. Clara hid in the girls' restroom during recess and physical education so she wouldn't have to participate. Since she was unsuccessful at athletics she found it easier to sit on a toilet with her feet pulled up so no one would see her. Clara continued to miss a great deal of school but was required to do her school work at home. During second grade she worked ahead, completing both second and third grade work. Consequently, she was allowed to skip third grade, which only accentuated her small size. When she entered high school people thought she was in third or fourth grade. After entering puberty at age 14 she finally acquired an appetite and began to grow much taller. At this point in her life, Clara decided that she would never be sick again. She graduated from high school in 1950, after acting in dramatic productions, serving as president of the Girls' League, and planning the ten year class reunion. Clara married at age twenty, between her junior and senior years in college. She had few symptoms during this time and was hired as a kindergarten teacher. Her husband was drafted and she taught in several different places on the west coast while he was in the service. During this time, Clara had a baby girl followed by two miscarriages. Three weeks after the birth of their second child Clara became very ill and lost her hair. They had no insurance and she lost a dramatic amount of weight. She weighed only 80 pounds and her husband had to carry her from the bed to the couch. The vomiting and diarrhea got worse and her mother had to take care of her babies. She was on heavy doses of medication and her doctors thought her gastrointestinal problems "were all in her head." Clara's speech became "jumbled" and she was not making sense. Her doctor sent her to a psychiatrist who placed her in a "sanitarium." She was hospitalized for several months where she felt very isolated and alone. Her relatives weren't told where she was and her father would not allow her mother to visit her. At the sanitarium Clara received shock treatments every three days, ten in all. Her sister offered her son's college fund to pay the sanitarium bill so that Clara would be allowed to leave. When Clara returned home she found she had lost much of her memory. She didn't remember how to hold a knife and her daughter, who was three, taught her how to tie her shoes. She was on sedatives and slept much of the time. She does not know how she took care of her children during this time. Clara and her husband had little money, so she took in ironing and taught preschool. It took them twelve years to pay off the hospital bills. It was fifteen years after this experience, and two babies later, that Clara finally got treatment for her celiac disease. She was hospitalized at UCLA Medical Center for a month while more tests and an intestinal biopsy were completed. It was 1972, and she was now 39 years old. The gastroenterologist finally confirmed the diagnosis of celiac disease and told her that she would never be able to eat pie, bread, or cake ever again. Clara was so thrilled that it was "just food" that would make a difference and not cancer. The doctor told her that there was no reason why she was still alive. Within two months she was noticing a difference and had gained weight. Clara was able to go back to teaching part-time and started teaching full-time in 1981. After her celiac diagnosis Clara did her best to avoid grains completely. One doctor told her to eat wheat germ, a product she clearly was correct in avoiding. In the 1970s she tried to make bread with rice, but her attempts were very unsuccessful. Clara started a support group in 1984 which was part of the Celiac Sprue Association. Little by little the group started receiving information on eating gluten-free, as many of these foods were readily available in Europe. By 1988 there were some gluten-free foods available in California. Clara experimented with cooking and breads and tested recipes for Carol Fenster's cookbooks. Her household today is totally gluten-free, with the exception of a loaf of bread for her husband. She and her husband traveled extensively after their retirement, visiting every state except Hawaii, along with the Caribbean and Australia. As far as lessons learned, Clara believes that people should listen to each other. She says, "If a person says, I feel horrible, someone should listen. The medical profession didn't listen to me. They said it was all in my head. If they had listened I could have been helped." It is unfortunate that her doctors didn't listen, as Clara could have been diagnosed much sooner. Willem-Karel Dicke first published an article on the importance of a gluten-free diet for the treatment of celiac disease in 1941 (Berge-Henegouwen & Mulder, 1993). Since my own celiac diagnosis came within two months of the onset of symptoms, I marvel at how someone could live for 39 years while still eating gluten. I think about the lessons to be learned from Clara's story. I consider the advancements that have been made in the diagnosis and treatment of celiac disease and the ease with which I'm able to eat gluten-free. And I send a reminder of the importance of early detection and the physical and emotional consequences that individuals like Clara face when a celiac diagnosis is delayed. References: Guandalini, S. (2007). A brief history of celiac disease. Impact, 7, (3), 1-2. Van Berge-Henegouwen, G. P., & Mulder, C.J. (1993). Pioneer in the gluten-free diet: Willem-Karel Dicke 1905-1962, over 50 year of gluten-free diet. Gut, 34, 1473-1475.
  10. Celiac.com 05/11/2016 - You just got out of your daughter's doctor's appointment and have been told: "It is confirmed, she has celiac disease." What do you do? Tell everyone else in the family they must follow a gluten-free diet? What do you do when you have a merged family of celiacs and non-celiacs? My mother went through this very thing. With being celiac herself, she well informed herself via the internet as to what did and didn't have gluten in it. Both my oldest brother and I were eventually diagnosed celiac. This left my other brother and my father being the only two non-celiacs. It can be difficult to wrap your head around just how important maintaining a gluten-free diet is for a celiac when you aren't celiac yourself. So yes, sharing your toaster with both gluten and gluten-free bread can make a celiac ill. Having wheat flour in your kitchen can cross-contaminate, be ingested by a celiac resulting in an adverse reaction in either the celiac child or adult. Keeping gluten away from a celiac is extremely important. Removing those croutons from the top of that salad does not suddenly make it "safe" for any celiac. I am celiac and my husband is not. My 1 year old, Brixton, hasn't eaten any gluten to date. He will also have to be tested when he gets a little older as celiac disease is genetic. How do I maintain a gluten-free household that is both healthy for me and satisfying for my husband? Easy! Get two toasters, seriously! An extra pot just for those special nights my husband wants real good ol' gluten loaded fettuccini. I buy premade boxed treats and snacks that have gluten in them so he doesn't feel "deprived" and so I also don't have to make him cookies and treats with gluten in them. I can say my husband really has taken to gluten-free baked items. I make gluten-free waffles and pancakes every weekend and he drools over them. Not to mention the delicious gluten-free cookie dough I make! Yum! He also knows that when we go out to a restaurant, anything is game for him. He goes to town on the fresh bread, pasta, etc. that the restaurants have. We do however try to maintain a healthy diet from day to day, therefore we primarily eat protein, vegetables, fruit and good (healthy) fats. For those days we want a little something extra, we always have boxed gluten snacks for him and some delicious gluten-free flours for me to whip up something tasty for my whole family. The most important thing to remember is that a gluten-free diet isn't just a diet someone with celiac disease "can" follow if they want. It is a necessary diet and lifestyle they MUST follow for their health and wellbeing. Consider it their "medication" for the disease. With that in mind it may make the celiac and non-celiac families live in harmony.
  11. until
    The GFAF Expos are the largest and fastest growing special diet consumer events in the US. Started in 2007, the events are professionally managed and have expanded from one to seven cities throughout the United States. In addition to meeting the needs of the Celiac community, the Expo welcomes those with gluten sensitivities, auto-immune/inflammatory diseases and autism. What do you get with your Expo Ticket? Entry into the 100+ booth vendor fair Valuable coupons at the vendor booths Samples from the vendors Discounted products available for purchase Informative classes related to the gluten and allergen-free lifestyle Free reusable bag to carry your goodies The chance to meet your favorite vendors, authors and bloggers For more information, visit www.gfafexpo.com
  12. Celiac.com 01/25/2016 - The latest research says that most fail to recommend celiac screening for first degree relatives, although some doctors are better than others. In a recent study, researchers tried to get an idea of just how frequently celiac disease patients receive a physician-issued recommendation for first-degree relative screening. The research team included Abhik Roy, Colin Smith, Constantine Daskalakis, Kristin Voorhees, Stephanie Moleski, Anthony J DiMarino, David Kastenberg. They are variously associated with the Division of Biostatistics, the Division of Gastroenterology and Hepatology, the Department of Medicine at Thomas Jefferson University, Philadelphia, Pennsylvania, USA, and the National Foundation for Celiac Awareness in Pennsylvania. For their study, the research team conducted a 12-question survey assessing whether celiac disease patients receive a physician recommendation to screen first-degree relatives for celiac disease, and the impact of such a recommendation, was validated with outpatients in a university gastroenterology practice, called "University"patients. The 12-question survey was then distributed online to members of the National Foundation for Celiac Awareness (NFCA). The team then collected results over 3 months, and used univariate analysis to compare cohort means, and to assess the association between demographic and diagnostic factors and first-degree relative screening recommendations. A total of 87 University patients participated in the validation phase. Test-retest reliability of 4 key survey questions was high, with a Kappa coefficient >0.80. The team based its main analyses on data from 677 NFCA and 82 University respondents. Most respondents were female, with an average age of 45 years. Nearly 80% of University patients received recommendation for celiac disease screening for first-degree relatives, compared with just 44% of the NFCA respondents (p < 0.001). Of patients who did receive a screening recommendation, from either group, 98% percent discussed the recommendation with family members, leading to celiac disease screening in 71% of University patients, and 79% of NFCA respondents, and to a celiac disease diagnosis in 18% of University patients, and 27% of NFCA respondents. Physicians commonly fail to mention to their celiac disease patients the importance of screening first-degree family members. Because such screening is so effective, the researchers are suggesting that making such screening recommendations may increase the diagnosis of celiac disease in high risk individuals. Source: Journal of Gastroenterology and Hepatology Research, Vol 4, No 12 (2015)
  13. beachbum

    It's Just One Cookie!

    My first blog takes me back 5 years ago when my youngest daughter started her freshman year of high school. She had been diagnosed Celiac for 5 years at this point, by now I was sure my daughter had come to terms with her restrictive diet. She was happy-go-lucky Madeline, ever smiling, always positive, living every day with joy. Little did I suspect that the social acceptance of being a young gluten-free teen was secretly troubling her and it was about to burst forth in a profusion of tears and sudden flight from her classroom. All because of just one cookie! Nobody wants to read the minutiae of a teenager's day, so I will sum up the event. Choir class of 100 students, dozens of cookies left over from an evening event, the class is all offered cookies. A hundred girls each enjoy one delicious cookie while one girl sits among them with nothing. Madeline politely approached the choir teacher and asked if she could get something from the choir store since she couldn't have a cookie, at which the teacher replied, "Madeline it's just one cookie!" [insert gushing tears and dramatic stage right here] Two class periods later, the oldest sister, Claire, enters the choir room. Claire is a gifted singer, little miss detail and unofficial teacher helper…she is also a Celiac. The choir director is concerned about Madeline's meltdown and speaks to Claire asking if her little sister is always so emotional over things as insignificant as "Just One Cookie". Claire's response is spot on. "Sir, you don't understand, its not just one cookie…its one cookie yesterday, one cookie today, one cookie tomorrow, and the day after that and after that and after that…it will never be just one cookie for her!" Four years later at Madeline's graduation party, one of her fellow graduates (also a Celiac) came up and hugged me and said. "Mrs. Wilson I have been looking forward to Madeline's party all week because I knew you would have Gluten-Free cake. This is the only piece of graduation cake I will get to have." Wow! She, too, was longing to fully participate, to have the same experience as everyone else. All I could do was hug her, congratulate her on her graduation, and ask if she would like me to wrap up an extra piece for a rainy day. Over the years I had gone to great lengths to ensure my girls were fully included in sleepovers, cookouts, and pizza parties because sharing food and drink is the most common form of social ritual, an intrinsic part of feeling included. I found that when it comes to a gluten-free lifestyle, its never been about "Just One Cookie".
  14. Since being diagnosed with celiac disease, I have read so many accounts of non-supportive family and friends. I had never experienced it first hand though. I thought I understood and could sympathize with others in this position. I was wrong! I have two sisters from my father's side of the family. I have seen them maybe 5 times in the past 25 years. Most of our interaction has been over facebook and such things. We really wanted to spend some time building a stronger relationship. We decided to go on vacation. They came my direction from ohio and florida. We made plans for a trip even farther west than where I live to Cali. As we planned I was very clear " I must have a room with a kitchenette." I will bring all my own pots and pans and such things, but I will NEED to cook my meals at the room or have a cooler of things that I can eat with us. I am very sensitive and have not had great success in eating out. My house and car are COMPLETELY gluten-free. " I was trying to be understanding and even said " You two can take my car if you want to eat out. I know that for a lot of people that is a big part of vacation." They seemed all on board and excited about saving money by eating in some etc.. Then came the airport pick-up. We stop for snacks. My sister picks up chex mix with cheez-it and pretzels in it. I was like oh you can't eat that in my car or in my house. I then pointed out the lays and the ruffles and fritos, cheetos etc.... all gluten-free snack options. Oh I love lays chips and fritos etc... But I want these. Ok you can eat them on my porch. REALLY? yes really. . I made Lemon poppy seed muffins and blueberry muffins ( both of which they requested the flavors) that I have served to people not gluten-free that never knew and ate multiple muffins. for the car ride. I even found a completely gluten-free resteraunt in Hollywood for us to try . Only the Absolute ATTITUDE I got about having to go out of the way and WASTE 20 extra minutes to go there was so Overwhelming I allowed myself to be cowed into once again trying to eat out in a reteraunt they wanted to go to. 30 minutes of them picking things like Pizza parlors that I had to say I cannot even attempt to eat there I finally exploded and was like " I told you not to worry about me just pick a place to eat and I will go on my own and find something I can eat!" ( we were walking in an open air market area) They looked at me like I was so crazy and mean for getting upset when they were trying so hard. So they went and got two whole pizzas and I went and found a sushi place. (This was usually a good option for me) After about 45 minutes I got a little nauseous and a lot of GERD ( my first symptoms of being glutened). The next day we ended up at a taping. Again we couldn't bring our own food in so I eneded up eating a snack bag of fritos while they ate burgers, fries and wraps. No biggy. It was noones fault. We didn't know. after the taping I NEEDED food. I wanted to stop at a gas staion to warm up my hamburger ( I had brought pre-cooked burgers and buns) only they were not hunger and just wwanted to get to the next hotel that was 2 hrs away. Now I have to wait 2 more hours. We get tot he hotel I want to get to the grocery and make some food I feel safe eating. Oh no they want to go to the beach. I put my foot down. I am going I need to eat. They go with me. After I get stomping and slammed doors because they missed the sunset on the beach because I " rolled eyes" just had to go to the store right then. I look over and on the table is a crumpled crumby cookie exploded all over the food preparation area. I almost cried. When I finally tried to open a conversation I got "We washed our hands and tried to keep our food away from you. Its our vacation and we are not gluten-free so we should not have to deal with your problems on our vacation!" Really, you cant eat your cookie outside or your pie in the restaurant. Those things were so dang hard so that I could enjoy a pain free healthy vacation. Anyway I decided to come home a lone and they could not have to deal with my illness interfering with their need for cookies and pies. Now they are calling me crazy and told me I don't deserve to breathe because I left them there. I feel somewhat guilty about that, but they were sneaking their crumbly cookies and cheez its in my car. CRUMBS everywhere that I put my groceries! UGHHH. They didn't want to respect my property or my health or make any sacrifice to have me with them. I gave them what they wanted. To bad they now have a new set of issues to deal with like renting a car ( both are capable of for sure) and now finding lodging for the next 7 days. They also have lost any opportunity to have any relationship with me. To those of you that have to deal with this sort of insensitivity and lack of concern on a regular basis..... My prayers and thoughts and love to you all.
  15. My Celiac Disease is causing really stressful family drama. This has been an issue since I was diagnosed, but has gotten worse lately. The problem is with my dad. He and my mom live in the same town as I do and I often eat there. Because I am so sensitive to gluten, my mom has tried to keep their house 100% gluten-free. But my dad keeps bringing in bread and then gets bread crumbs around the kitchen. He tries to be careful, but he slips up and uses the butter to butter the bread and therefore gets the butter contaminated. He has used this butter to fry eggs and many other things. So the butter gets in the dishes, the utensils and the sponges. Despite being on a strict gluten-free diet for nearly 5 years, my antibodies are still slightly elevated at this point. I don't even eat out in restaurants at all because of cross-contamination. I have to cook all my food myself. However, I'll eat at my parent's house sometimes and they will cook for me. I have trusted them to make safe meals for me (and they have read many books about Celiac Disease and are very familiar with cross-contamination). My mom doesn't want any gluten in the house, but my dad keeps bringing in bread. We have tried to talk to him about this problem but every time we bring it up, he gets very defensive and takes it personally. I have told him that I am afraid I can't eat any meals that they prepare because of possible cross-contamination. My mom spent nearly a week cleaning the entire kitchen but he keeps bringing in bread. She is extremely frustrated with him, as am I. It's very perplexing because my dad is a very kind and loving person. But I think he is behaving selfishly when it comes to this. He'd rather bring bread home and eat it and therefore put my health at risk. But he doesn't see it that way. He thinks my mom and I are overreacting. However, he is getting old and forgetful. He can be very absent minded at times and doesn't seem to remember the correct protocols for dealing with cross-contamination. Last year, I was a guest in someone's house and the kitchen was dirty and full of crumbs. I ended up getting exposure even though I prepared my own food and using my own dishes. I was having panic attacks and other symptoms for almost 2 weeks afterward. He saw what I went through. But I think he's in denial when he sets his kitchen up to be a similar risk. This has lead to a lot of tension between him and my mom. I have thought about giving him 2 choices: either he stops bringing in bread and I will eat their meals OR he continues to bring in bread and I will not eat any of their meals. I hate to think that my disease causes so much stress and drama in my family. Fortunately, they are a lot more understanding than a lot of families, but my dad has his pitfalls. This is really stressing me out and I think it's causing unnecessary drama. Any suggestions?
  16. My son Z was dx with celiac at age 12 months, in May 2011. Though he didn't have symptoms, I had a blood test done for my other biological son R, who was 4 at the time (test was negative). I have a number of symptoms on the "list" (IBS, iron deficiency anemia, underweight, unexplained fertility problems, etc.), but my blood test was also negative. (Same thing for DH, who has a somewhat different list of possible symptoms.) None of us have had genetic testing (and we have no other family members with a celiac dx). Fast forward three and a half years. R (now age 7) is having recurrent abdominal pains, constipation, and occasional severe joint pain (in his knees) that were attributed to "growing pains." I know that while there is a genetic component to celiac disease, it's thought to be an acquired disorder. So should family members be retested periodically? Only if there are symptoms? How often for kids and how often for adults? I also have a 7-month-old now. Assuming she doesn't develop noticeable symptoms, when should she be tested?
  17. Do most folks with Celiac require that their entire family be gluten-free? I haven't until now, but it seems to be coming down to just that. After being really sickened with gluten yet again, my husband actually offered to go gluten-free with me. We're only going to buy/make gluten-free breads, and most other foods. He said that I'm getting sicker when I accidentally eat gluten, and he really wants to help. I am very grateful, and told him that I am fine with him having an occasional beer, or eating whatever he wants when we're out somewhere. Basically, if it couldn't make its way into me, I don't mind. We discussed what we should do about our daughter, and neither of us really know how to handle it. I'd be fine if she ate gluten at school (she normally takes her lunch, but her school has pizza day once in a while) or when we're out. The hard part is that she's at an age (8) where she's able to make a sandwich, but not able to always remember not to put the knife back in the peanut butter after it touches bread. She leaves cookie/bread crumbs in the kitchen sometimes, and those seem to have a way of making it into things I eat. Into the PB, or onto the butter, or who-knows? We want her to learn her way around the kitchen, and we don't want her to miss out on eating stuff; but I need to stay safe. Would it be unreasonable to ask that everyone in the house limit their gluten to eating out and occasional snacks? How do y'all handle this? Thank you.
  18. Celiac.com 11/25/2011 - In solidarity with family members who have food allergies, many families enforce a voluntary ban on the food or foods in question. But is that an that a safe and advisable practice? A leading dietitian claims that people who avoid foods to which they are not allergic may have problems if they attempt to reintroduce those foods later on in life. Dietitian Arlene Normand says that banning food for those without allergies is not healthy, and could lead to later health complications. Normand specifically claims that that banning foods for the whole family, just because a family member has allergies to those foods, may leave one at risk for developing sensitivities when those foods are reintroduced later. "You should not avoid any food because you can sensitize the body to that food," she said. "This could lead to an intolerance when you reintroduce the food. She cites wheat as another example, saying that people who "take wheat and gluten out of their diet suffer from bloating when they reintroduce bread." However, a number of prominent voice in the medical community strongly disagree with Normand. Many allergy specialists say there is no evidence to support that claim. Royal Prince Alfred Hospital allergy specialist Dr Robert Loblay flatly disputed Normand's claim. "There is no evidence to suggest that avoiding a food can predispose an individual to an intolerance," he Loblay. While he supported high risk allergy families eliminating foods such as gluten, milk or nuts, he said it can be difficult to enforce a total ban. For example, Dr Loblay says that it's fine to ban gluten for convenience when someone in the family has celiac disease. However, he says, there's no sound evidence that other people in the family should avoid eating foods containing gluten, or that they will suffer once they reintroduce it into their own diets. Alyson Kakakios of The Children's Hospital Westmead agrees that it's fine for families to place blanket bans on foods for the sake of one family member. "If one child has a cow's milk allergy, parents are in a bit of a dilemma about whether they should have cheese, yoghurt and cow's milk in the house because the risk is that the child will mistakenly drink or eat some," she said. "But that risk has to be counterbalanced against removing or excluding whole food groups from the other children and family members who are not allergic." So, what's the verdict on blanket bans of allergens for the whole family? Of course, everyone should weigh their own personal factors into the mix, but the current scientific thinking says that such bans are optional, and that there will likely be no increased risk of allergy if or when a banned food is reintroduced to someone who is merely avoiding the food, but not allergic to it to begin with. One exception on overall bans might be in those cases where allergies can be life-threatening. Exposure to certain allergens, such as nuts, can have severe consequences for people who are allergic, and an outright family ban might be easy and provide a great amount of relief all around. Anaphylaxis Australia president Maria Said agrees, saying "I would encourage parents to remove the allergen from the house if it is something that can be easily removed. It's much less stressful if you don't have the fear of your child having an anaphylactic fit." Otherwise, don't worry. Ban or don't ban depending on your family needs. Just make sure you're replacing any nutrients you might be losing out on by avoiding the banned foods. There is currently no solid scientific evidence to suggest that people who avoid foods would have any problems if they ate those foods many years later. Source: The Sunday Telegraph October 02, 2011
  19. Celiac.com 03/19/2014 - The incidence of celiac disease in the United States is rising. Children with the disease attend public and private schools and educators must ensure them equal educational access and a safe environment. If you are a parent of a child with celiac disease you know the struggles you have faced in trying to make sure your child doesn’t miss out on educational experiences, school lunches, and a safe and bully-free classroom environment. To find out more about what children with celiac disease and gluten intolerance experience in school, a recent study examined the educational, social, and family challenges of children with celiac disease in pre-kindergarten through grade twelve. Phone interviews were conducted with children and their parents. One hundred thirty-eight mothers and two fathers were interviewed along with one hundred fourteen girls (70%) and forty-eight boys (30%). Fifty-three percent of these families had more than one immediate or extended family member with celiac disease and some families had as many as four children with celiac disease or gluten intolerance participate in the study. Approximately 80% of children attended public schools, while the remaining 20% attended private or charter schools or were home schooled. Eating Gluten Free Seventy-nine percent of students packed their lunch, 10% ate meals from the school cafeteria, and 11% did both. There were numerous reasons why more students packed than ate from the school cafeteria. Many school cafeterias do not provide gluten free food options, cafeteria personnel are not adequately trained to ensure there is no cross contamination, food tastes bad or is unhealthy, children prefer to pack, or there are frustrations with cost and availability. Parents and children in this study discovered that the quality and variety of gluten free options varies dramatically. Some schools require that students order meals in advance, others are on a three to five day rotation of gluten free lunch options, and others report they pay more than the price of a typical school lunch. One mother evaluates the menu, shops for gluten free substitutes, and is reimbursed by the school, while another mother creates a breakfast and lunch menu for her son and the school buys and prepares the food. There were children who got sick from cross contamination or were served food that was not gluten free. 504 Plans and IEP’s Seventy-four percent of parents who participated in this study reported their children did not have a 504 plan or an Individualized Education Program (IEP) for their celiac disease. Accommodations for children with celiac disease are assured under Section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. If you have children with celiac disease they are eligible for a 504 Plan which outlines the accommodations that are necessary for them to be safe and successful in school. With a physician’s documentation your children can receive gluten free lunches that are commensurate with what typical children are eating, as well as accommodations such as unlimited bathroom privileges, gluten free classroom materials, and safe access to field trips and school sponsored camps. Your children may also be eligible for services under the Individuals Disabilities Education Act (IDEA) if their disability has an impact on their ability to learn. Children with celiac disease who have a disability covered under IDEA, such as a learning disability or autism, can have accommodations for eating and living gluten free written into their Individual Education Plan (IEP). In addition, these students can also be certified as Other Health Impaired under IDEA. If your children’s celiac disease has resulted in limited strength, vitality, or alertness which negatively affects educational performance and requires specially designed instruction, they can be certified as Other Health Impaired and receive services, even in the absence of another disability. Many parents in this study had never heard of Section 504 or the Rehabilitation Act of 1973 or had not been informed by their schools about their rights under 504 or the Individuals with Disabilities Education Act (IDEA). Still others knew about 504 but had decided not to pursue a 504 plan for their child. Some parents who were trying to get a 504 plan for their children met with resistance, were told they didn’t qualify, or were begged by school personnel not to request this type of legal document. However, sixteen percent of parents reported they did have a 504 plan for their child and 4% indicated their child was diagnosed as Other Health Impaired and had an IEP. 504 plan accommodations included unlimited bathroom visits, gluten free school lunches, gluten free classroom and art supplies, notification of holiday parties, birthdays, field trips, and classroom activities involving food, microwave access, unrestricted permission to eat snacks, refrigerator/freezer use for storage of gluten free foods, washing of cafeteria tables, classmate hand washing after snacks and lunch, lunch monitoring for young children, notification of gluten ingestion, and assurance of a safe food preparation environment to avoid cross contamination. Impact of celiac disease on the Academic Experience Thirty-seven percent of the children interviewed indicated they had felt sick during the school day as a result of their celiac disease. Parents and children indicated that celiac disease does affect learning, academic performance, and behavior. Do these symptoms sound familiar? Parents reported distraction from stomach aches, brain fog, fatigue, problems with memory, processing, and attention span, and irritability, behavioral changes, and emotional outbursts. In addition, some children had excessive school absences or experienced severe neurological problems from undiagnosed celiac disease with recovery times spanning several years. Despite the effects of the disease on learning most 504 plans that exist for celiac disease do not include academic accommodations. Social Challenges and Emotional Health Children experienced many social challenges with their celiac disease. Children felt different, embarrassed, left out, and isolated as a result of the disease. Parents often described their children as “outcasts” who feel very much alone. Parents also suggested their children felt stressed by the celiac disease. Many children felt angry or sad when they were not able to eat treats other children were eating. Some children did experience sadness and depression over not being able to eat gluten and were in therapy as a result. One mother recounted that her son stated, “I can’t wait to go to heaven so I can eat wheat.” One of the biggest social challenges mentioned by parents was eating at parties and other social events. Birthday parties where pizza and cake are traditionally eaten seemed to be especially difficult. Some parents sent gluten free pizza and cupcakes with their child, others attended parties with them to monitor cross contamination, and others stated their children attended but didn’t eat. Sometimes children who attended parties said they were not hungry so they didn’t have to explain their celiac disease and others left before the food was served. Several parents noted their children received fewer invitations than before their diagnosis because friends did not want the responsibility of feeding a child who eats gluten free. Parents indicated that social events and field trips at school were equally challenging. While some schools no longer allow birthday treats or other food to be shared at school, many still do. Several mothers volunteered as “homeroom parents” and attended every party to monitor their child’s safety. Many parents kept a gluten free treat bag or cupcakes in the classroom or nurse’s freezer for their child and requested prior notice when treats were going to be shared, with varying success. While parents reported most teachers were receptive to allowing parents to send in gluten free snacks, some were not. Some parents requested a gluten free classroom environment, critical for children who are especially sensitive to gluten. Parents often wanted their children’s classmates to be aware of their need to eat gluten free and believed their children’s social status and school experiences were enhanced by sharing at the beginning of each school year, while other parents wanted an assurance of privacy. Field trips and school related camps were also very challenging for both parents and children. Several mothers have packed a week’s worth of gluten free food so their children could attend camp with the class, while some children didn’t attend at all. Other parents attended every field trip. Parents reported that field trips to places such as fortune cookie factories and Chinatown are aggravating and children sometimes stay home on those days, missing out on the educational experience. Many parents reported their children have been teased or bullied because of their need to eat gluten free. Children are called names, such as “gluten monster,” others are “beaten up,” and one child was told “to die and never come back to school.” One mother reported the teacher made fun of her daughter in front of the class and several parents stated their children’s food was purposely contaminated during lunch. One mother dealt with bullying by sending in fabulous gluten free treats for her son’s birthday. Soon the children were asking for more treats and the family began having parties at their house with “great tasting” gluten free snacks, pizza, and cupcakes. Life Changes Children reported their lives have changed since they were diagnosed. For the most part, they indicated they were healthier, felt better, had fewer stomach aches and headaches, ate more fruits and vegetables, had more energy, and were growing physically. However, children noted they found life more challenging than before, which they attributed to the added stress and complications of needing to plan ahead so they were able to eat safely. Many children missed school field trips, especially overnight trips, and school related camps because accommodations could not be made or parents were afraid of gluten exposure. Children also indicated their social lives had changed and it was difficult for friends to understand. Several children believed they now know who their true friends are. Some children believed their lives were actually better since they were diagnosed. They talked about being unique and special. One boy seemed to summarize it best by saying, “It’s just food. You’ll live. Look at it in a positive way and educate people.” Parents were also asked how their lives changed after their children were diagnosed. They describe how “drastically different,” “life changing,” and “all consuming” their life became after their children had to eat gluten free. Some parents described a difficult quality of life, others mentioned their terror in the first year, and still others explained that “nothing is easy.” Twenty-two percent of families made their households totally gluten free while 8% of families still have gluten in their homes but prepare only gluten free meals. There were many reasons why families decided to have a gluten free household. Some parents felt it was important to go gluten free to support their children, others were fearful of cross contamination, and still others decided that eating gluten free would be healthier for everyone. Those families who did not convert to a gluten free household believed that their children have to learn to live in the “real world” but made changes such as labeling food, meticulous cleaning, and separate toasters and pantry shelves. One life change mentioned by almost all parents was a significant increase in the time involved in grocery shopping, meal planning and preparation, and ensuring their children will be safe. They plan ahead by always carrying gluten free snacks with them, order online and in bulk, and put much more thought into what the family will eat. The increase in time is spent reading food labels, traveling to multiple grocery stores, delivering lunches to their children at school, and baking and cooking from scratch. Food is no longer an afterthought and many parents use gluten free apps to find products that are safe. One parent estimated that she spends 20% more time planning for and raising her child with celiac disease than she does for her other children. Food cost is also a significant life change for many families. Parents mentioned their “outrageous” grocery bills, with some reporting that grocery bills doubled or quadrupled. While some indicated they were fortunate not to have a tight food budget, others described their budgets as being “out the window” and the “nightmare” of spending a fortune on gluten free food. One mother stated that she went to work part-time after her child’s diagnosis to pay the grocery bills. Parents universally agree that eating in restaurants and attending social events are life changes that are extremely difficult and problematic. Many families don’t eat out as much and there is typically underlying worry when they do eat in restaurants. Parents mentioned they miss restaurants they used to love, experience limited restaurant and menu choices, and are frustrated with “no kid friendly” gluten free menus. Many parents noted their children have gotten sick after eating in restaurants. Other families do continue to eat out, often in establishments they know they can trust, and are pleased that restaurants are more accommodating than they were in the past. Parents lamented that most social events involving family, friends, or organizations revolved around food. Many extended family members don’t understand celiac disease and the necessity of eating and living gluten free. Attending family events was viewed as very stressful, leading to discord and arguments between parents. Parents reported the complexity of invitations to birthday parties, especially those at pizza and fast food eateries. Friends didn’t know how to accommodate or were fearful of making a child sick and some friendships ended. One mother noted that it was “very lonely at first” and another stated that “disease scares people away.” While almost all families in the study experienced these challenges at some level, others remarked at how fortunate they were to have family and friends who go out of their way to accommodate. There are grandmothers who do gluten free baking, friends who order gluten free pizza and cake for birthday parties, and neighbors who keep gluten free snacks on hand for play dates. Celiac disease was reported to bring significant changes to travel plans and destinations as well as the frequency of taking trips. “Food issues are huge,” spontaneity is gone, and stress levels are high. Some families don’t travel because “all the effort went into where we can eat,” while others make all travel choices based on where they can eat. Many mothers discussed “horrible” experiences traveling and huge coolers of food that were packed. One parent stated, “When we leave the house for a trip it’s like treading water. I’m nervous until we get to a destination where we can eat. I try to make sure they’re full before we get in the car.” Another indicated that “it’s more trouble than it’s worth.” Still other families continue to travel frequently. They plan carefully, choose accommodations with kitchens, and use gluten free apps to find restaurant options. Some even travel world-wide to places like Australia, Trinidad, China, India, and Peru, without incident. Religious affiliation is also a life change affected by celiac disease. Church pot luck dinners and youth group snacks were mentioned as problematic, but receiving communion was the biggest challenge. While some churches allow gluten free communion wafers, others do not. Many parents wrestled with what decision they would make when their child was ready for first communion and some families reported that they left the church because of these issues. One family spent considerable time examining their allegiance to the Catholic faith knowing their son would not be able to fully participate. After much soul searching the parents decided they were very devout and made the decision to follow all aspects of the church’s teachings, including forgoing birth control. Baby number seven is on the way! The life changes resulting from celiac disease affected the mothers in this study more than the fathers. Mothers typically do more of the meal planning and preparation, grocery shopping, and child care, making them more vulnerable to the affects of gluten free eating on the family. Mothers reported stress, depression, anger, guilt, and anxiety after their children were diagnosed. One mother stated that she “went into mourning for months” and another reported that she was “overwhelmed” even though she is a nutritionist. Several mothers cried during their phone interviews. An unexpected life change that resulted from a child’s celiac disease diagnosis came in the form of career changes. Several mothers transformed or altered their careers after their children started eating gluten free. One mother dropped her work time to twelve hours a week in order to have more time to grocery shop and cook, while another mother added part-time work to pay for gluten free food and a therapist for her son. Two mothers entered college and became nutritionists, one opened a gluten free bakery, and one quit her job to do gluten free awareness. Conclusions and Recommendations for Parents Celiac disease brings significant life changes and challenges to children and families. Almost all the children in this study did eat gluten free, both at home and at school. However, most children pack their lunches and only a small percentage of children have a 504 plan or IEP. celiac disease does have an impact on children’s academic performances and experiences, especially for those children who have extreme sensitivity to gluten. In addition, eating gluten free brings profound social challenges and life changes for children and families and the potential for mental health concerns. Mothers, in particular, are significantly impacted by their child’s diagnosis and some experience stress, anxiety, and depression. There are a number of things you as a parent can do to alleviate challenges brought on by celiac disease and improve the quality of life for your children, yourselves, and your families. Schools are not fully informed about celiac disease and many children have educational, social, and dietary needs that are not being met in school settings. The legal implications for schools who do not meet the requirements of Section 504 of the Rehabilitation Act of 1973 are many. Become informed about Section 504 and the Individuals with Disabilities Education Act (IDEA) and request advocacy assistance when needed. It will be important for you to learn how to advocate for your child’s safety, security, and school success. The National Foundation for celiac Awareness (NFCA) is a nonprofit organization that can assist by providing excellent online resources and advocacy support. Request that accommodations, including those related to learning, academic performance, behavior, and mental health, be written into a 504 plan that is specific to your child’s needs. Your 504 planning meeting should include all school personnel who interact with your child, including the principal, guidance counselor, nurse, classroom teachers, food service director, and cafeteria workers. You may find yourself in the role of trainer or informant during this meeting, as many of these individuals may not have heard of celiac disease. Do your homework and be prepared with handouts and website addresses that cover topics such as celiac awareness, symptoms, the risks of cross contamination, and foods to avoid. (See Appendix) If your child is interested in eating school lunch, request gluten free lunches that are commensurate with lunches served to typical children. Ask for training for cafeteria staff so they can prepare a separate kitchen area with dedicated cooking utensils, appoint a staff member and alternate who will be in charge of preparing your child’s lunch, and fully understand the effects of cross contamination. If your child chooses to pack a lunch ask for microwave access so food can be warmed at school. Finally, request that the school store a three-day supply of gluten free food for your child in the event of an extended lockdown. Your child’s safety must extend from the cafeteria into the classroom. You can decide how you wish to share your child’s celiac disease with the class. Any information shared must be age appropriate. In the elementary grades visit the classroom to talk about celiac disease so children are well informed. If possible, bring in a gluten free snack to share. This is especially important if your child is being teased. (Just be sure that the gluten free snack is especially tasty!), Children’s books are available that you can read to the class as a way to begin discussion, although most are written at a primary grade level (See Appendix). Although some parents want to keep their child’s health issues private, sharing is critical in the case of celiac disease because there are many things classmates can do to help keep your child safe. Request that gluten free classroom materials be available for your child (crayons, glue, a Play Doh substitute, cooking ingredients) and in the case of younger children, for the entire class. The risk of contamination is great if children with celiac disease are in a room with airborne flour or if they touch materials that have gluten and then put their hands in their mouth. In addition, your child should never miss out on educational opportunities such as field trips, school related camps, road trip sporting events, and cooking and art projects as result of their gluten free needs. These types of accommodations can be written into a 504 plan so you can be assured of equal educational experiences. Ensure that your child does not miss out on social experiences such as girl or boy scouts, church groups, birthday parties, sleepovers, and family events because they need to eat gluten free. These experiences play a critical role in any child’s social development. If possible, allow your child to attend such events independently, especially as he/she gets older, so he/she is able to make a successful transition to living independently. Call in advance to see what food will be served and, if possible, replicate with gluten free versions. Try to reassure adults who are worried that children with celiac disease will get sick at social events that children must learn to live in a world with gluten and avoid exposure. Become involved in celiac support groups with your child to ease the burden of adjusting to a new diagnosis and dealing with the day to day challenges of gluten free living. R.O.C.K. (Raising Our celiac Kids) has chapters in approximately 38 states and the District of Columbia and organizations such as the National Foundation for celiac Awareness, the celiac disease Foundation, the Gluten Intolerance Group, and the celiac Sprue Association also provide services and support. (See Appendix) Consider eating more naturally gluten free foods (lean meat, fruits, vegetables, eggs, yogurt, and whole grains like quinoa) at home to reduce food costs and improve health. There is nothing innately healthy about eating products made with rice flour, tapioca flour, and potato starch. They are low in fiber and high in calories and carbohydrates. Anyone who says they are going on a gluten free diet to lose weight but eats gluten free pasta and pizza will be very disappointed. Finally, analyze your attitude about your children’s celiac disease and their need to eat gluten free for life. If you are frustrated, angry, or depressed about their diagnosis they will experience those same feelings. In this study, it was very apparent that children who demonstrated sadness, anger, or mental health symptoms were often modeling the mind-set of their parents. In contrast, those parents who had positive attitudes about the celiac diagnosis (e.g. my children are healthier now and growing more, there are plenty of gluten free alternatives, etc.) had children who exhibited that same upbeat outlook. Appendix of Resources and Children’s Literature: National Foundation for celiac Awareness, Available at http://www. celiaccentral.org/About-NFCA/19/ Celiac Sprue Association, Available at http://www.csa celiacs.info/index.jsp Celiac Disease Foundation, Available at http://www.celiac.org/ Gluten Intolerance Group, Available at http://www.gluten.net/ Raising Our celiac Kids (R.O.C.K.), Available at https://www.celiac.com/articles/563/1/ROCK-Raising-Our- celiac-Kids---National- celiac-Disease-Support-Group/Page1.html Gluten-Free Kids: Raising Happy, Healthy Children with celiac disease, Autism, and Other Conditions by Danna Korn Incredible Edible Gluten-Free Food for Kids: 150 Family-Tested Recipes by Sheri Sanderson Bagels, Buddy, and Me: A Story about Gluten Intolerance and celiac disease by Melanie Krumrey The celiac Kid by Stephanie Skolmoski Cilie Yack is Under Attack: A Story About a Boy with celiac disease by Caryn Talty Adam’s Glute Free Surprise: Helping Others Understand Gluten Free by Debbie Simpson No More Cupcakes & Tummy Aches by Jax Peters Lowell Mommy, What is celiac disease: A Look at the Sunny Side of Being a Gluten-Free Kid by Katie Chalmers Eating Gluten-Free with Emily: A Story for Children with celiac disease by Bonnie J. Kruszka
  20. Hey guys, my older sister has recently moved in with my mom and I she eats gluten all the time. But I have also labeled everything and talked to her about cross contamination and everything but she still uses everything and I still get sick because she refuses to understand how sick. Any ways to get her to understand, I was diagnosed in February and living by myself but I came home after a injury. Any ways to get my boyfriends mom to understand. Thank you, this website is awesome
  21. Janice Ann

    Gluten Dinner Party

    My husband invited twenty guests for dinner cooked by five visitors from another country. The young people started preparing the food at four, and I immediately got my ingredients separated to later cook myself. They fried the shrimp, cabbage and bell peppers in flour batter, and set the food on the tables. I didn’t get to start cooking my version of the food until 7:30 after everyone else was seated and some had finished eating. A family arrived late, with a child allergic to shrimp, so he couldn't eat the food on the table. My husband tried to take away my cooking gluten-free cakes to give to the child. I protected my gluten-free supper with my arms while we shouted at each other. He finally got it into his head that my cakes had shrimp in them, or he would have taken my supper away from me. (He didn’t offer to cook the child a shrimp-free dinner with the excess two quarts of batter and gallon of chopped cabbage.) Four frying pans were coated black with fried batter residue. So I wouldn’t throw them out, my husband scoured them with great resentment. He will have to use his power tools in the garage to get all the black off.
  22. This article originally appeared in the Spring 2004 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 04/05/2010 - In the 13 years I’ve been involved in the wonderful world of “gluten freedom,” one of the questions I’ve been asked most frequently is whether or not the entire family should be gluten-free. For parents who have kids on the gluten-free diet, this seems to be a natural instinct––if Johnny can’t eat gluten, none of us will. But I’m not sure that having the entire family go gluten-free is the best thing––unless, of course, it’s for health reasons (I, for example, choose a gluten-free diet because I believe it’s healthier). This is one of those questions that has no correct or incorrect answer, so I’ll share with you, for what it’s worth, my personal perspective on the issue. Pros: It’s easier when the whole family is gluten-free, because you’re making only one version of every meal, as opposed to two or three. There is less risk of contaminating safe foods because there aren’t any “unsafe” foods in the house. Preparation is easier, and there’s no need for the gob drop or any other tricky food-preparation maneuvers. Finally, from a psychological standpoint, you avoid having some people feel ostracized when their food is made separately and they’re eating different foods from the rest of the family. Cons: It’s more expensive and sometimes more labor-intensive for everyone to eat specialty foods (Try not to be a “saver.” Sometimes, after spending $3 each for sugar ice cream cones, I’ll find myself guarding them like a hawk. I’ve accumulated several boxes of untouched stale cones now). Feeding the whole family home-made gluten-free bread at nearly five dollars per loaf, when three out of four family members could be eating a commercial brand, has an impact on the family’s time and finances. More important, especially if children are involved, forcing the entire family to be gluten-free because of one person’s dietary restrictions can put a strain on relationships. Sometimes this works in both directions. In my family, for instance, my daughter would resent being forced to be on a 100 percent gluten-free diet (we’re pretty close to that anyway) just because that’s how her brother Tyler eats. Interestingly, though, it works the other way too. Tyler doesn’t want his sister to be deprived of a bagel, nor does he resent her for being able to eat one (especially because the gluten-free bagels we buy over the Internet are so good these days!). Resentment is almost inevitable at some level if family members are forced to give up their favorite foods for one member of the family––at least when kids are involved. The last reason against a gluten-free family is probably the most compelling one, and is the primary reason I haven’t forced my whole family to be gluten-free: it’s not reality. Again, this is more important when a child in the family has the restricted diet, because the reality is that this world is filled with gluten, and most people on this planet eat it––lots of it. These children need to learn how to handle the fact that for the rest of their lives, they’ll be surrounded by people eating gluten. If that makes them feel bad, sad, or mad, that’s okay. What better place to learn to deal with those unpleasant emotions than in the loving environment of their own home? They may be more tempted to cheat because the food is in their home and others are eating it; again, there may be no better place to deal with temptation and learn to resist it than in the loving environment of their own home. The compromise: In no way am I advocating someone waving a Krispy Kreme donut in your face singing, “Nah-nee-nah-nee-nah-nee…you can’t eat this” in an effort to build character. With the excellent gluten-free products available today, it’s easier than ever to compromise by eating relatively gluten-free. Try to buy salad dressings, condiments, spices, and other foods and ingredients that are gluten-free when you can. For foods like pasta, bread, and pizza, you can make two varieties, one of which of course is gluten-free and prepared carefully to avoid contamination. Cost aside, I don’t see any reason to bake “regular” cookies and baked goods anymore. The gluten-free mixes are so incredible that my kids and their friends prefer them to “the real deal.” They’re easy enough that the kids can make them themselves, and it’s a psychological upper for my gluten-free son when his sister and friends can’t get enough of “his kind” of cookies. You’ll probably find that because it’s easier to make one meal than two, you’ll gravitate toward gluten-free menus. With good menu planning, and a kitchen well-stocked with gluten-free condiments and ingredients, it’s likely that your entire family will inadvertently become mostly gluten-free without realizing it, and without the resentment that might have developed if the issue had been forced. If your family does end up mostly gluten-free, or if you eliminate gluten completely, remember that anyone who is going to be tested for celiac disease (and all family members should be) must be eating gluten for at least several weeks prior to doing any tests for celiac disease.
  23. This article originally appeared in the Winter 2006 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 04/30/2010 - The gluten-free lifestyle is a big part of who we are. So when friends, relatives, and loved ones don’t get it—I should clarify—when they seem to choose not to get it—we sometimes get a little cranky. I know—I was reminded of how it feels when loved ones don’t choose to get it this past Thanksgiving when one of my relatives who shall remain nameless glutenized the mayo jar. Now I realize it may seem petty to get tweaked about someone dipping a knife in a mayo jar—but it had gluten all over it, and worse yet, she did the same thing last Thanksgiving, and I threw a tizzy about it then. Realizing the first dip alone contaminated the entire jar (of course it was the club-sized jar that is the size of a small Volkswagen), there was no point in stopping her from doing it again. But I watched incredulously as she taunted me, dipping the knife into the jar—then onto the (gluten) bread—over, and over, and over again. How many gobs of mayo does one need on a piece of bread?!? I found myself seething, and my blood boiled with every dip-and-spread motion; I swear she was doing it intentionally. Yes, I know I should have had a squeeze bottle handy, and I even write about that in my books. My mistake, but I also write about doing the “gob drop,” which is—as the name implies—the process of taking a gob of (insert condiment here) and dropping it onto said piece of gluten. Using a separate knife, you spread. It’s really not that tough. The bigger point here is that it made me wonder why, after fourteen years of going through this, she didn’t care more about our gluten-free lifestyle. I spent about six minutes pondering this when I remembered that it’s not that she doesn’t care—maybe she does, and maybe she doesn’t. The bigger point is that she wasn’t thinking about it at that moment—and that’s okay. This is our lifestyle, and we love it. Those friends and family who do care enough to call and make sure the meal they’re serving us is gluten-free are to be cherished. Those who make a special trip to the health food store to buy a mix and make gluten-free cookies are to be downright hailed as saints. Even those who make a beautiful gluten-free meal and then top it with teriyaki sauce (of the gluten-containing variety) because they don’t know any better are to be adored for trying. I write about this stuff in my books, and it surprised me a little to find myself getting miffed about such a petty thing. I thought I had outgrown those feelings 14 years ago. I guess my point is that we all face certain challenges from time to time, and we need to put our brightest face forward and meet those challenges with a good attitude, lest they get the best of us. The most important thing that helps keep me on track, for what it’s worth, is to remember that the gluten-free lifestyle is the key to our health and ultimate happiness. We’re blessed to know that a simple change in lifestyle is all it takes to be perfectly healthy—and that’s worth a lotta mayo.
  24. A must-read survival guide for parents, friends, teachers, and caretakers. Kids with Celiac Disease is a practical survival guide for families of children and teenagers with this lifelong digestive disorder. While it sounds as though it is only applicable to children with the condition, Kids with Celiac Disease is loaded with valuable information for people of any age - as well as for people on the gluten-free diet for reasons other than celiac disease. Written by the mother of a celiac child diagnosed in 1991, Kids with Celiac Disease is a compilation of 10 years of experience and research. Danna founded R.O.C.K. (Raising Our Celiac Kids) in 1991, and incorporated much of what she has learned from other parents into this book. Kids with Celiac Disease includes: Practical suggestions for dealing with school, sitters, birthdays, holidays and other unique challenges Menu and snack ideas Emotional and psychological implications How to talk with friends and family Eating out at restaurants Travel tips Up-to-date scientific, medical and nutritional information A resource guide listing contact information for hundreds of resources that are valuable to anyone on a gluten-free diet. Click here to order!
  25. You just need to ask them to check for the DR haplotype. HLA testing is more expensive when you check more haplotypes - there any many to check. Its a poor analogy, but when looking at a car engine, you can just check the oil, or you can also check the radiator, spark plugs and carburetor. there are two DR types for each person - one from each parent. If even one of the two is DR3, then the person is at risk for celiac disease. But remember that around 25% of the entire population has DR3, too. If you are a celiac (or your husband), and your child has DR3, then the risk is something like 25%. We have a file on this called CEL-HLA on the main listserv which is available for you to download. If the result is DR5 on one side and DR7 on the other, then the child has the same risk as if they simple had one DR3. Its complicated why thats true, you can read it in the above file. If the child has NEITHER of the above scenarios, it is very very, very unlikely they will ever get celiac disease. Most good commercial labs can run HLA, its much more common of a test than regular celiac testing (endomysial test).
×