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Celiac.com 06/10/2021 - When I walked out of the doctor’s office in West Virginia in 1999 with my diagnosis in hand, I felt a confusing mixture of relief at finally knowing what in the world was wrong with me and dismay at learning there was nothing left that I could eat!  Celiac disease. I had never heard of it, yet all the tests showed that I definitely had this autoimmune disorder which prevented me from ever again eating wheat, barley or rye. I had spent nearly 10 years suffering through untold and embarrassing doctors’ tests and misdiagnoses as well as riding a roller coaster of nasty gastrointestinal symptoms.  Bouncing between specialists at major hospitals got me nowhere for those many years, as they had no idea what was the cause of my ailments. Finally, through luck or fate, I happened upon a doctor in Huntington, West Virginia who pieced together my symptoms correctly. The good news was that I at last knew something could be done about my symptoms; the bad news was actually trying to do it!  Having to transition immediately from my steady diet of pizza, pasta, and bagels to rice, beans and bananas proved necessary but incredibly difficult, especially since there were virtually no palatable gluten-free recipes, ready-made foods or mixes.  As with most things, what seemed at the time like an ending was actually a beginning —it was just a little hard to see at the time. Even as a little girl, I had loved baking!  My EasyBake Oven was broken-in early, as my mother patiently let me experiment at a very young age. When I was 16, I went to Malaysia as a foreign exchange student and saw unspeakable things that caused me to become a life-long vegetarian.  I could eat almost nothing my host family ate, so I survived primarily on bread and things I could make for myself.  I was determined to persevere in this situation where I was the unwelcome minority. It became a matter of physical as well as emotional survival.  It was an experience that brought unexpected rewards and helped me to know the value of determination and problem solving—traits I would certainly need later to handle living with celiac disease.  In college, the mainstays of my diet were pastas and breads; I also often baked for friends who loved being treated to homemade cookies, cakes, muffins and brownies.  Baking was even an outlet for my creativity during law school and a great stress-reliever too!  I ultimately baked so much that I ended up selling my excess treats to the law school café! Creating recipes in the kitchen has always been part of who I am—to make and share things that others enjoy is one of my greatest pleasures.  But then I woke up one day as an undergraduate and was sick. I was never the same again.  It was like the final drop had dripped into a sink full of water and from then on, the sink would overflow with even the smallest addition. I couldn’t go out on dinner dates, go out to eat with friends, enjoy Thanksgiving dinner with family, participate in a birthday party, or share any other social activity that involved food in any way (doesn’t everything?!) without getting sick. It took almost ten years to find out that the culprit was the main ingredient in the things I most loved to eat and make! I was in the midst of planning my wedding when the diagnosis came; just about the only things I could eat at the reception were fruit, some steamed vegetables and the (proverbial) icing on the cake.  All my dreams of wowing my new husband with great cooking and baking were sabotaged as I began to experiment in the restrictive world of gluten-free cooking.  Recipes from special cookbooks called for ingredients that were next to impossible to find and yielded results that were mostly inedible.  My husband and I both worked long hours—he as an Assistant United States Attorney and I as an Assistant State Prosecutor—but there was no fast food I could eat, and even regular restaurant menus were mine fields of hidden gluten.  Trying to bake for holidays was one disaster after another.  My husband began to ask, “Is this gluten-free, honey?” and when the answer was yes, he would politely decline. All I wanted was for my life to be “normal” again.  Several things happened at about the same time which gave me direction and which have made all the difference in my life and, I hope, in the lives of many others!  When I was diagnosed, my mother made it her mission to find recipes for things I could still enjoy eating and she created a binder of these recipes that we both began to expand.  We started a collection of recipes from everyone from personal friends to people we met at the health food store.  I found it a challenge to try recipes and to improve upon them by modifying them in my own ways. About a year and a half after the diagnosis, we moved to Baltimore and I discovered I was pregnant.  Now, added to my new job in a new place with new doctors was the very serious challenge of maintaining proper nutrition for pregnancy and breast feeding.  This caused me to shift all my efforts into high gear. I wanted to revolutionize gluten-free cooking into something even non-celiacs would enjoy. Several years of experimenting with various grains and flours culminated in my creation of a mixture that could successfully and safely replace all purpose wheat flour.  The primitive binder of recipes we had begun blossomed into lots of delicious concoctions. As others (celiac and non-celiac alike) repeatedly asked for recipes and doggie bags, I realized how important it was to share my hard work and successes with others trying to live normally without wheat and gluten.  I could create fabulous things to eat, teach others what I had learned about our disease and how to manage it, and meet lots of new people along the way!  I’ve been able to accomplish all these things by sharing my cookbook/guidebook called Nearly Normal Cooking for Gluten-Free Eating and by consulting with other celiacs and those with food allergies. I have met some amazing people along the way and helped them meet our challenge head-on and overcome it in fun and creative ways. So, there really is a higher purpose for my diagnosis. I took a mighty circuitous route, but only because I have celiac disease am I now in a place where I can help others and do the things that I love best at the same time. It has been loads of work, but I persevere knowing that I’m cooking not only for me and my family, but for millions of others who can now live a healthy, gluten-free and truly “nearly normal” life!

08/03/2020 - New research shows that cytokines, particularly IL-8 and IL-15, could be used as markers to distinguish celiac disease from non-celiac gluten sensitivity (NCGS) and healthy people. Researchers have noted that levels of some inflammatory cytokines rise in people with celiac disease and NCGS, in contrast with healthy subjects. A team of researchers recently set out to create an accurate tool for using cytokines to distinguish healthy patients from those with celiac disease and NCGS. The research team included Fatemeh Masaebi, Mehdi Azizmohammad Looha, Mohammad Rostami-Nejad, Mohamad Amin Pourhoseingholi, Navid Mohseni, Gabriel Samasca, Iulia Lupan, Mostafa Rezaei-Tavirani, and Mohammad Reza Zali. They are variously affiliated with the Department of Biostatistics, Faculty of Paramedical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Gastroenterology and Liver Diseases Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Department of Immunology, Iuliu Hatieganu University of Medicine and Pharmacy Cluj-Napoca, Romania; the Department of Molecular Biology and Biotechnology, BabesBolyai University, Cluj-Napoca, Romania; and the Proteomics Research Center, Faculty of Paramedical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran. The team assessed serum samples from 171 participants, including 110 celiac patients, 46 healthy subjects, and 15 with NCGS. They used commercial ELISA kits to detect levels for cytokines IL-1, IL-6, IL-8, IL-15, and IFN-γ. They applied the ROC curve analysis to establish the best levels for high sensitivity, specificity, positive and negative predictive values of cytokines, as the indicators of celiac disease, non-celiac gluten sensitivity, and healthy controls. In the NCGS group, the AUC values for IL-1, IL-8, and IFN-γ were 71%, 78% and 70%, respectively. IL-15 distinguished the celiac and NCGS groups from control group nearly 83% of the time, the highest overall. Additionally, IL-15 showed nearly 57% specificity, 82% positive predictive value, and 58% negative predictive value. IL-8 had nearly 75% sensitivity, the highest overall, with nearly 74% specificity, nearly 96% positive predictive value, and just over 30% negative predictive value. The team's results show that IL-8 and IL-15 could potentially act as markers for distinguishing celiac disease from the NCGS and healthy controls. The team suggests that the assessment of cytokine levels can be a useful tool for diagnosing celiac disease and NCGS and spotting the difference between the two conditions and healthy control subjects. Read more at: Iran Biomed J. 2020 Jun 1

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