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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    CARING FOR SOMEONE WITH CELIAC


    Yvonne Vissing Ph.D.


    • Journal of Gluten Sensitivity Spring 2017 Issue


    Celiac.com 05/05/2017 - What do you say to someone who doesn't "get" the fact that gluten makes people sick? It's not that people are intentionally callous and uncaring. They simply don't understand that going gluten-free isn't a fad or a choice for most people. This means that all too often when it comes to eating, they are perfectly content to go their merry way and eat whatever they want and if you're with them, well, you'll figure out something to eat. They don't mean to be insensitive jerks, but sometimes they present that way. As many of us have learned, when someone you love has a gluten sensitivity, the response of "it's their problem and it's not my issue" simply isn't good enough. Love means that you try to understand the experience and challenges of the person you care about.


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    Celiac disease and gluten sensitivities are sneaky buggers. They are expert at masking what's really going on. So it's no surprise that parents and loved ones often screw up when it comes to understanding the physical and emotional experiences of someone whose got gluten issues. Maybe we heard about gluten issues, but it's one thing to read information and look at it intellectually as an abstract phenomenon and it's extra hard when you don't know anyone whose had gluten related problems.

    I grew up with pasta, home-made bread smothered with butter, cookies, and a sense these were comfort foods - not something that could make you deathly ill. No surprise, when my children didn't feel well, I'd pull out the crackers and chicken noodle soup, with a little mac-n-cheese for good measure. The children would snarf them down, and I had a self-inflated sense of motherly pride for having fixed them healing foods. Little did I know that my culinary delights were responsible for giving them GI track upset, migraines, skin problems, and the precursors to Celiac disease. There was no way of knowing back then that autoimmune problems ran on their father's side of the family, since we divorced when they were wee. In fact, most people don't really have their heads wrapped around the autoimmune disease thing at all, because as we say in New England, "it's wicked complicated!" Not knowing, in hindsight, makes the saying "killing them with kindness" take on new meaning.

    Today the dangers of glutening someone are well-recognized by most people, even if they don't understand all the sheer dynamics of what the cause-and-effects of it are. The problem is, unless you've seen someone writhing in distress from ingesting gluten by accident, your understanding of being glutened remains an intellectual, abstract mental exercise. The difference between knowing about being glutened and the actual experience of it are worlds apart. So if you have a family member, loved-one, colleague, or someone you're responsible to/for (as are teachers, day-are providers), what are you to do to show people with gluten issues that you care? Here are some suggestions.

    1. Talk to the person. Really talk with them. Ask them questions about what their experience of being glutened is like. Find out about what they perceive to the be causes of it. Listen to them talk about their emotions and how they feel when they are sick – and how they feel about others who help them or are contributors to their distress. Once they open up, they will likely tell you about things that frustrate them about trying to eat normally, problems they've encountered, and how they have to monitor their lives to avoid getting sick. People with Celiac disease or gluten issues are experts. They will look you in the eye and tell you what it's like in a way that inspires a caring person to pay more attention to what's going on so they can do better not to make someone sick. Inquire what you could do – and not do – that may prevent glutening someone. They will also give you big hints about what to say and do (and what NOT to do).
    2. Read. There is a lot of information available about what gluten is, where it is found, what it does to people, and alternatives for it. It's in books, magazines, online websites galore, and even sometimes on television. In our book, Going Gluten Free, we list a bunch of sites for you. Given the large amount of information that's freely available, there is no excuse for not knowing about gluten is, what it does, and how it should be handled so people don't get sick. Take the time to educate yourself about gluten, celiac, what it does, and how to live gluten-free in a harmonious and healthy manner. Others will feel that you genuinely care when you tell them about what you've learned and the information you've accessed!
    3. Pay attention. Once you know about glutening people, start paying attention to menus at restaurants, ingredient lists of food products, and what and how food is being served. Even "safe" foods can be cross-contaminated and served in ways that can make someone with gluten sensitivity sick. Sometimes those fixing or serving food aren't as savvy as they coulda-shoulda-oughta be about gluten-free dining. If you go somewhere and the server looks foggy when you ask about their gluten-free options, don't order anything that is remotely questionable. Size up the whole dining ambiance, see if you can get a glimpse at the kitchen, ask if they have a gluten-free menu or policy. If your intuition blinks "danger!", listen to it. Better to be safe than sorry.
    4. Be annoying. Many people with Celiac or gluten issues are sweet-hearts and don't want to inconvenience others. So be prepared, when appropriate, to ask questions, push the envelope, and do background check to ensure that your loved one doesn't get glutened. Being able to eat safely is a human rights issue. You are not being annoying by asking questions or demanding that you (or your loved one) are served food that can be consumed without negative outcomes. Others don't have the right to make you sick. It's as simple as that, so learning to stand up for yourself or others is a good practice to get into!

    Image Caption: Photo: CC--pizzawhale
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    Guest mike

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    RIGHT On! I agree it's not a fad its a lifestyle since I was diagnosed with celiac disease when I was in the hospital admitted for 4 days after a colonoscopy discovered it. Everyone who is ignore those people at Trader Joe's or other places think its a fad or new trend when it's our way of life or we get really really sick

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    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.