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  • Yvonne Vissing Ph.D.
    Yvonne Vissing Ph.D.

    Caring for Someone with Celiac

      Journal of Gluten Sensitivity Spring 2017 Issue

    Caption: Photo: CC--pizzawhale

    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.

    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!

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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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  • About Me

    I have just finished writing the book, Going Gluten Free, and it is receiving rave reviews! I wondered if you would be willing to put up an announcement somewhere on your web page about it. I would also be happy to write for you or do other things to promote the importance of going gluten-free. I’m a medical sociologist at Salem State University who co-founded the Association for the Study of Food in Society. My son is Celiac, only we didn’t know it for years, and then when we figured it out, it took us a long time of doing everything wrong before we were doing everything right. The book is a comprehensive book for any gf people, but especially for those just starting out. Here is an Amazon link about it.  We have a flyer on the book that I uploaded for you. I can also send you a pdf of the book or hard copy if you want. My website is www.yvonnevissing.com Let me know how we can become partners in the pursuit of everyone having a positive gluten-free lifestyle! Looking forward, Yvonne Vissing

  • Related Articles

    Yvonne (Vonnie) Mostat, RN
    Did You Know? (Spring 2017)
    Celiac.com 05/19/2017 - Did you know that now, according to Beyond Celiac 83% of those with celiac disease are misdiagnosed or undiagnosed? Did you know that the average time a person waits to be correctly diagnosed, according to Daniel Lefler, M.D., M.S, of the Celiac Center at Beth Israel Deaconness Medical Center is still six to 10 years? This has changed little in the past 10 years, even though celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Over a four year period, people with undiagnosed celiac disease cost an average of $3,964 more than the healthy individuals (Source: Long et al, 2010.
    Did you know that 5 - 22% of people with celiac disease have an immediate family member (first degree relative who also has celiac disease, and that there isn't yet a pharmaceutical treatment or cure for it? In 2009 WebMD reported that, in the USA, celiac disease has quadrupled over the last 50 years, yet many people who have the disease remain undiagnosed. Still Dr. Stefano Guandalini, N.D. Director of the Celiac Disease Center at the University of Chicago told WebMD, "Many of these people have no symptoms, but many do have symptoms that are not recognized for what they are. We believe that only five percent of people with celiac disease know they have it".
    Is there any wonder that a woman at the dietician's office at our local hospital where I sometimes volunteer did not know she had celiac disease? This is because she was only experiencing symptoms of joint and muscle pains, abdominal pain and laboratory tests only showed anemia. She was first referred to an orthopedic specialist, then an internist, and neither checked for celiac disease or questioned her further. "Hello!!" Are there still general practitioners out there who are not aware that there is a blood test for celiac disease?
    Some people experience symptoms found in celiac disease such as a "brain fog," depression, ADHD like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition. When removing gluten from their diet it removes symptoms. At my first biopsy of the bowel the gastroenterologist failed to biopsy the jejunum. My blood test was positive, the biopsy of the dermatitis herpetiformis proved positive too, and it wasn't until I insisted on a second biopsy of my jejunum that I was diagnosed. If I had not been persistent, I would have given up after the first biopsy and continued itching and ingesting gluten. Persistence, or stubborn determination (i.e. knowing my own body) paid off, but it took a year for the dermatitis herpetiformis to totally rescind, most particularly the sores on my scalp.
    You know your own body better than anyone; you know when something is wrong. If your grocery store fails to give you good service you go elsewhere. The Celiac Disease Foundation, both in Canada and the United States, can help you find the right doctor to discuss your symptoms so you can get diagnosed and treated. Shop and find your own healthcare practitioner. Do not allow a doctor tell you that you are neurotic, perimenopausal, or their favorite: "stressed." Since there are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body, and some people develop celiac disease as a child, others as an adult, you owe it to yourself to keep checking and researching and reading magazines like Celiac.com's Journal of Gluten Sensitivity, because, according to the Mayo Clinic, there is no cure for celiac disease.
    The American Journal of Gastroenterology, at ScienceDirect.com, offers a nationwide view of celiac disease, and conducted two randomized trials that tested strategies of early or delayed gluten introduction in infants, and neither strategy appeared to influence the risk for celiac disease. They also indicated that breastfeeding did not protect against celiac disease. "While disappointing, these results should spur the study of wider environmental risk factors beyond infant feeding, such as intrauterine and perinatal exposure as well as environmental influences later in life, including drug exposure, microbial infections, and the mictobionme. Given that celiac disease can develop at any age, it is imperative to study these proposed triggers so as to elucidate the loss of tolerance to gluten and to develop future intervention strategies."
    At the start of the Gastroenterology study, between 2000 and 2001 - 11.1 out of every 100,000 people had celiac disease. Toward the end of the study - between 2008 and 2010 it was up to 17.3 out of every 100,000 people. However, researchers noted that the incidence of celiac disease plateaued after 2004. It is no big surprise that they believe, according to Dr. Stefano Guandalini, M.D. "that only about 5 percent of people with celiac disease know they have it." Web MD reported that "Celiac Disease had quadrupled." Many physicians I approached whilst completing this survey indicated it was physician knowledge of the signs and symptoms of celiac disease that has caused a greater increase in celiac testing and the use of a simple blood test (tTG-IgA). The Tissue Transglutaminase Antibodies test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The same test will come back negative in about 98% of healthy people without celiac disease. Although rare, patients with celiac disease could have a negative antibody test result. There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like Type 1 Diabetes, autoimmune liver disease, Hashimoto's thyroiditis, psoriatic or rheumatoid arthritis, and heart failure. This test is not good for someone who has been following a gluten-fre diet on their own.
    A biopsy of the small intestine is still considered the only way to diagnose celiac disease by many doctors. Many parents are reluctant to submit their young child to a biopsy of the Jejeunum and have used only blood tests, including the IgA Endomysial antibody (EMA). This test has a specificity of almost 100% but it is not as sensitive as the tTG-IGA test, because about 10% of people with celiac disease do not have a positive EMA test. Also, it is VERY expensive in comparison to the tTG-IgA and it requires the use of primate esophagus or human umbilical cord, so it is usually reserved for difficult to diagnose patients. The Total Serum IgA is used to test for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTC-IgA or EMA result. If you are IgA deficient, our doctor can order a DGP or tTg-IgC.
    The decimated gliadin peptide (DGP-IgA and IgG) is a test that can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies. Even though it is very rare, it is possible for someone with celiac disease to have negative antibody test results. So please do not become discouraged even with negative results, if you are still experiencing symptoms talk with your physician and undergo further medical evaluation. Keep in mind that some of these tests are not medically covered by insurance.
    Did you know that you can get genetic testing for celiac disease? People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25 - 30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease. However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%.
    Since celiac disease is genetic this means it runs in families. First degree family members (parents, siblings, children) who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseases when the genotype is unknown is 7% to 20%, which is a big difference!
    We cannot blame ALL physicians for the lack of a correct diagnosis. It is one of the most puzzling, multi-faceted diseases, and a patient going into their family physician's office may have very vague symptoms. Thousands of dollars may be spent on blood tests, referrals to specialists, x-rays, and scans before a diagnosis is found. There is nothing more deflating or frustrating to someone who has a myriad of legitimate symptoms than to be told that they are either depressed, stressed or suffering from an overactive imagination.
    Sources:
    The American Journal of Gastroenterology https://celiac.org http://www.beyondceliac.org 

    Jean Duane PhD
    Survey for Gluten-Free Adults Who Live with Other Adults
    Celiac.com 08/18/2017 - In a recent issue of Journal of Gluten Sensitivity, we announced a research study/survey for adults who are 18 or older and living the "gluten-free" lifestyle in a household with other adults over 18. Click here to read the Survey Overview Article.
    The survey is a research study conducted by Jean Duane, PhD Student at the University of Denver. It will focus on family interactions when dealing with dietary restrictions, with the potential to increase family members' compliance. It will seek to gain insight on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. This study has social significance because family unity in the future may rely on developing strategies for compliance to address this emerging social problem.
    Please consider participating in this survey if you are an adult living the gluten-free lifestyle who cohabitates with another adult who may or may not have food restrictions. Your responses will be kept confidential. The survey should take around 10 minutes to complete and a compilation of the results will be published in an upcoming issue of the Journal of Gluten Sensitivities on Celiac.com. As a "thank you" for participating in this survey, your name will be entered into a drawing. Four lucky winners will receive a $25 Amazon.com gift card.
    If you are interested in participating in a more in-depth interview to discuss your coping strategies, successes and struggles, you will be prompted at the end of the survey to provide contact information. Jean Duane will contact you and schedule a mutually agreeable time for the interview.
    To take the survey, please click here:
    NOTE: SURVEY CLOSED AS OF 9/18/2017.

    Jean Duane PhD
    Relational Aspects of Food Sensitivities - Survey Half-Time Report
    Celiac.com 09/20/2017 - A half-time report on what we've learned about each other so far in the Relational Aspects of Food Sensitivities research.
    The study is geared toward gaining perspective on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. It may ultimately yield strategies to address the social and emotional impact of living with food sensitivities. It aims to provide coping strategies, solidarity and empowerment to our community.
    If you haven't had a chance to take the survey, unfortunately it's not too late. If you have, thank you! More about the survey will appear in the next issue and the four lucky $25 Amazon gift card winners will be announced next month as well.
    Here's what we've learned so far:
    Ninety-six percent (96%) of those who took the survey have a diagnosis that leads them to be on a gluten-free diet. Fifty-one percent (51%) have been diagnosed for 8+ years; 28% have been diagnosed between 4-7 years, 13% between 1-3 years, 5% between 7 months and 1 year, and 3% between 0-6 months. Most began eating a gluten-free diet immediately after being diagnosed. Fifty-two percent feel that the way they were diagnosed affects how seriously the other adult(s) living in the household take their dietary requirements and 23% report that the way they were diagnosed doesn't affect the behavior of the other residential adults at all.
    When it comes to how diagnosed, 73% were diagnosed by an MD; 12% by themselves; 5% by a Practitioner, 5% by "Other;" 3% by a Naturopath and 2% by a Nutritionist. Forty-six percent (46%) report that they check in with a medical or health professional to monitor their health/diet once a year, and 21% get checkups several times a year. Most of us get our medical, health and dietary information we implement into our lifestyle from online sources (39%), books/magazines (21%) and from the MD (17%). The other 23% who took the survey get information from TV/Media, friends, and other sources. Because of the high-quality content available on websites such as Celiac.com, 87% report they are definitely not confused as to which foods are considered to be gluten-free. Sixty-percent (62%) of the respondents' report that other adults in the household are definitely not confused as to which foods are considered to be gluten-free.
    Ninety-two percent (92%) of us are not confused about what constitutes a "healthy diet." Thirty-eight percent (38%) feel they eat a healthy diet all the time, 48% eat a healthy diet most of the time, 11% eat a healthy diet sometimes, and 3% never eat a healthy diet. Our diet includes gluten-free grains 83% of the time, while 17% of us are grain-free.
    Adult cohabitants 'almost always' follow the same dietary requirements as we do in 56% of the households, 'sometimes' in 32% and 'rarely' in 12% of the households. Fifty-seven percent (57%) of us report that we eat different foods than the other adults living in the household 'sometimes,' while 22% of us do that 'rarely' and 21% almost always eat different foods. Adults with food sensitivities in 19% of the households enjoy meals prepared by another adult most of the time, 'sometimes' in 46% and never in 36% of the homes. Sixty-seven percent (67%) of those who eat meals prepared by another adult in their household trust that the meals are safe for them to eat.
    Fifty-one percent (51%) of those who took the survey report that someone else in the household prepares meals for them one to five times a week while 45% report they make all of their meals themselves. Most of us (95%) never cheat on the gluten-free diet.
    Demographics of the Respondents
    Eighty-five percent (85%) of the respondents are female and 15% are male. Ninety-two (92%) are white, most (65%) live with one other adult. Thirty-four point sixty two percent (34%) have a Bachelor's degree and 23% have a Masters degree. Household income was between $75-149K for 33% of the respondents.
    In-Depth Interview – Phase II
    For those of you who answered, "yes" to the Phase II interview (the longer-term portion of the research) and haven't heard from me yet, please be patient. I'm working with some time constraints now that fall quarter classes have begun and will be contacting some of you in the coming months to schedule a time to talk.

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    Im the same, I never know what to eat, some food does better than others for me, I went on to make my own soup and Im glad I did, I should do it more often and at least then J know what's going in to it, it wasn't the best first try but I enjoyed it haha
    Thank you for the advice, in the end I went and made my own soup, not great for my first try but it was better than potentially making myself worse, I enjoyed it, I got some vitamains too to take, I was able to find a liquid Vitamain B Complex, the store I went to was helpfull enough to show me what was Gluten Free.   I fealt awful around then, Im feeling like I have more energy now I can actually do things and focus more, Ill keep on like I have been, Im not 100% and still have some B
    Not to mention the fact that (for those using the Nima) the Nima sensor has been known to give false positives. https://www.theverge.com/2019/4/1/18080666/nima-sensor-testing-fda-food-allergy-gluten-peanut-transparency-data https://www.celiac.ca/cca-statement-nima-gluten-sensor/ https://www.allergy-insight.com/nima-is-it-really-96-9-accurate/ https://www.glutenfreewatchdog.org/news/troubling-gluten-testing-data-released-by-nima-but-hold-the-phone/ https://www.glutenfreew
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