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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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Found 22 results

  1. Celiac.com 11/13/2014 - An anonymous donor has made a $2 million dollar contribution to the National Foundation for Celiac Awareness (NFCA). The donation is the largest in the organization's history, and will support the NFCA’s mission is to raise celiac disease awareness, promote research and testing testing, and improve the quality of life for celiacs eating a gluten-free diet. Since 2003, the NFCA has worked to promote celiac disease research and awareness. The grant will help to ensure support for the NFCA as it looks to increase research and awareness into the future. Stay tuned for updates on how the NFCA supplements or expands its ongoing efforts on behalf of people with celiac disease and gluten intolerance.
  2. I don't know if any of you saw the rediculous post by buzzfeed, but it was enfuriating! I'm not going to include the link because I refuse to go back to it. I believe they were puposefully inflamitory in order to drive traffic to their site! They did, at least recognize Celiac as a real problem, but said that for anyone else who had a gluten intollerance it was all in their head! You guys all know how much of a struggle it is to be gluten free. All of you understand how exhausting it is to have to defend yourself around every corner, because someone thinks they innately know more than you about what it means to be gluten free. I'm sure you have all been accused of being unhealthy because you don't eat gluten (what the heck is that even about!!!????). I'm saying all of this, because (sometimes unfortunately) I can't just sit back. When things bother me this much, I have to do something. I know there is already a celiac awareness month (or week?) but it is in May.
  3. Celiac.com 02/21/2014 - Doctors in India made a bit of a splash recently by using music to help raise awareness about celiac disease, which is rarely-discussed, and under-diagnosed in that country. The group, representing numerous areas of medical specialization, met to raise awareness about the disease, especially among their medical peers. Nearly 10 million (1 per cent of India's population) suffer from celiac disease, and very few cases are properly diagnosed. Organized by The Celiac Society of Delhi at India Habitat Centre, the event featured doctors speaking about celiac disease and the importance of making a correct diagnosis. To make sure their message got across, they included a musical performance. The diagnosis and management of celiac disease in India is, at present, poor, says Celiac Society founder and president Ishi Khosla, adding that "…cases are often mistaken for irritable bowel syndrome, Crohn's disease, tuberculosis or a form of auto-immune disorder." People with undiagnosed celiac disease have a much higher risk of getting life-threatening maladies later on in life. In addition to featuring music and talks, the conference also played host to guest of honor C.K. Mishra, additional secretary to the Union Ministry of Health and Family Welfare. Source: Express News Service: New Delhi, Sun Dec 15 2013
  4. Celiac.com 05/17/2013 - After earning the title of Miss Hoboken International in January, and Miss New Jersey International 2013 on March 9, celiac disease sufferer Jenna Drew will compete with young women from across the globe in the Miss International Pageant in Chicago this July. Asked about her opportunity to shine, Drew, 25, who works for Litzky Public Relations in Hoboken, said, “I am so thrilled…You don't get to do something like this every day. It's so exciting.” Drew was diagnosed with celiac disease in 2007, after a blood revealed her mother, who was battling cancer, to be suffering from the disease. Since 2009, she has been working with the National Foundation for Celiac Awareness and speaking publicly about celiac disease. To rise to the top the pageant contest, competitors have to do be fit, glamorous, dance well, have a winning personality, and have strong commitment to community service. Drew seeks to raise awareness about celiac disease, especially about the benefits of giving up gluten. Since cutting gluten from her diet in 2009, most of her symptoms have have vanished. She also has more energy, and suffers fewer migraines, she said. Drew earned her bachelor's degree in advertising from Penn State University, and her MBA in marketing from the Florida Institute of Technology. Drew's latest victory earned her a $500 scholarship to help pay student loans, along with $250 toward an evening gown or cocktail dress for the next pageant. Perhaps most important of all, her victory covers the cost of coaching that will help her to sharpen the interview and public speaking skills that are so crucial to success in pageants, and beyond. And it will provide the opportunity to spread the word on celiac disease at engagements across the state. “Through this platform in New Jersey, I will be able to make connections and make a difference,” Drew told listeners. Drew will next compete in Chicago at the Miss International Pageant on July 22-28. Drew says she looks forward to meeting the other contestants, both from America, and from the around the world. Source: http://www.nj.com/hudson/index.ssf/2013/03/miss_international_hoboken_con.html
  5. Celiac.com 11/09/2012 - From their position in the public eye, celebrities can often draw attention to worthy causes, and to advocate for awareness of those causes more effectively than people outside the media spotlight. After being diagnosed with celiac disease in 2008, actress Jennifer Esposito is on a gluten-free diet, and though she's still recovering from the damage to her small intestines, the 'Blue Blood' actress is emerging as a strong advocate for celiac awareness. Like so many others with celiac disease, Esposito suffered for many years with symptoms ranging from stomach upset, exhaustion, joint pain, sinus infections, dry skin and hair, panic attacks, depression, and back pain. In fact, nearly twenty years went by before she had a solid diagnosis. In a recent interview, Esposito told S. Z. Berg that she is still dealing with the "repercussions of improperly being diagnosed over the years." She points to a lack of awareness about the disease for consumers and that fact that only recently "is the medical field paying closer attention." In a line that may be familiar to many people with celiac disease, she points out the long struggle to fully recover, even after adopting a gluten-free diet, noting that even though "many of the stomach issues and other ailment start to subside," celiac disease is an autoimmune condition that requires daily attention. People with the disease, she says, must constantly be aware of what they eat and maintain a healthy lifestyle, along with healthy vitamin and mineral levels. She says that her recovery has been "a long journey... and one that I still am on. The severe panic attacks have subsided as well as the depression, but with one bad meal they are ready and waiting to come to the forefront." Her own struggles have left her "determined to educate and make people aware of the truth about this disease." Ultimately, Esposito had her celiac disease confirmed through blood test and biopsy, but in some ways, that was only the beginning of her challenges. She says she believes that the medical industry needs to focus on "treating the individual person, the whole person, body and mind and not about money and mass studies of a disease." She also bemoans what she calls the "one pill fits all mentality" of the medical profession, along with the fact that nutrition is something that gets addressed only after an individual has gotten diagnosed. She describes this as "negligence," and says that it has compounded the damage, and with it, her difficulties. "My life is dramatically different and my health is a struggle everyday," she says. To help others with their celiac disease struggles, Esposito has created a blog called Jennifer's Way. There, she hopes to help people learn more about celiac disease and share the struggles and triumphs of her journey toward wellness. Her blog includes tips, ideas, and advice on how to get started in this new life. I also share some of my favorite easy and good for you recipes that I've created. She's also founded Jennifer's Way Foundation for Celiac Education to help make sure that going forward there is proper education about this disease in addition to helping to generate awareness to help people live a healthy gluten-free life. Jennifer has a nonprofit organization, Jennifer's Way, to help educate the public about celiac disease. Her Twitter handle is @JennifersWayJE. Developing Story: Breaking news indicates that Jennifer Esposito has been dismissed from her role in Blue Bloods, for reasons she says have to do with her celiac disease. This story is developing, so stay tuned... Source: http://www.huffingtonpost.com/sz-berg/jennifer-esposito-celiac_b_1770642.html
  6. Celiac.com 04/13/2012 - There is a disease that affects one in every hundred Americans and causes physical and mental agony yet once it’s diagnosed, it can be easily treated with a change in diet and without the administration of drugs. You maybe haven’t even heard of it. You would think that the sufferers of this disease would be rather lucky to have such an easy treatment option available to them, right? As a matter of fact, it turns out that this disease—celiac, or coeliac, disease—may be easy to treat, but it’s very difficult for doctors to diagnose, and for the very reason that doctors haven’t heard of it either. It’s estimated that three out of every hundred of the people with celiac disease has been diagnosed. Only three out of every hundred! So why is it that most celiacs suffer without diagnosis? Low awareness in this country means low awareness in the medical community about this disease. If you’re like most Americans, you probably haven’t even heard about it before you read this article. With celiac disease, a component of wheat, barley, and rye, called gluten, causes an immune reaction that attacks the intestine and can affect the entire body. Another reason for difficulty in diagnosing celiac disease is the fact that doctors usually miss the diagnosis because they don't realize how variable the disease can be. There are numerous gluten intolerance symptoms. People with celiac disease aren’t able to properly absorb essential nutrients because the villi, the absorptive fingers in the small intestine, have been damaged or destroyed. Other symptoms and problems caused by this autoimmune disease include diarrhea, fatigue, abdominal pain, bloating, gas, distention, weight loss, constipation, irritable bowel syndrome, vomiting, short stature, iron deficiency with or without anemia, failure to thrive in infancy, poor performance in school, delayed puberty, infertility, recurrent miscarriage, elevated liver enzymes, Down syndrome, Sjogren's syndrome, canker sores, arthritis, depression, osteoporosis, vitamin deficiencies, tooth discoloration and dental enamel defects, skin disorders, autism, nerve and balance problems, irritability in children, seizures, and migraines. Additionally, there seems to be a slightly increased risk of lymphomas and gastrointestinal cancers. Many symptoms of celiac disease look like many other diseases, sicknesses, etc so it is very deceiving. Doctors don't think of celiac disease, as it isn’t stressed in medical school or doctors are taught that the symptoms of the disease are always dramatic, which isn’t true. Doctors are, however, becoming more aware of the disease. However, it takes an average of four or more years before the correct diagnosis of celiac disease is made in the very small percentage who are correctly diagnosed at all. Celiac disease is easy to test for. Simple blood tests detect the disease over ninety percent of the time. The diagnosis is then confirmed by an upper endoscopy; a small, flexible tube is slipped into the mouth of the sedated patient, down his esophagus and stomach and into the first part of the small intestine, called the duodenum, where biopsies are taken and then examined for changes seen in celiac disease. Even simpler than testing for diagnosis is the treatment of the disease—a gluten-free diet. It is challenging and requires a lifestyle change, but with more and more gluten-free substitutes and gluten-free recipes available, adopting a gluten-free diet and gluten free cooking is easier than ever. There's research into developing a pill that would help people with celiac disease, as well. A few years ago I had many painful symptoms and bouncing from doctor to doctor with no diagnosis. I finally happen to fall into the hands of a doctor who very much knew about celiac disease and tested me for it. It took a lot of time and determination, and most people aren’t able to devote themselves to this degree. It’s really not right that millions of people are suffering from this disease with no diagnosis. A disease that can treated so easily yet the diagnosis for which is so elusive, when simply educating doctors in its symptoms would bring these people such relief. While efforts are surely being made to get the U.S. government to fund research and to raise awareness for this disease, there are some things you can do yourself besides just writing your representatives, which I highly suggest you do. If you were to send out this article to a hundred people or speak to the same number of people about this subject, chances are, you would come across a sufferer of celiac disease and you would change that person’s life. Better yet, post it on a blog or forward it to friends and have them forward it themselves. In this way, you may be able to contact many more than a hundred people. The increased awareness will lead to increase relief.
  7. Celiac.com 01/13/2012 - In an event that was part local apple festival, part celiac disease awareness promotion, and one-hundred percent record-breaking bake-off, a team of community members in Buenos Aires has baked the world's longest apple tart. One third of the 984-foot tart was made gluten-free to promote celiac disease awareness. Enthusiastic volunteers removed sections of the tart from numerous bakery trucks parked along Rivadavia Avenue, the world's longest avenue. They then assembled them end to end, making sure to keep the gluten-free portions carefully separated from the rest of the tart. This is the third year in a row that the tart-baking group, which is based in from Cinco Saltos, Argentina, has organized the tart bake-off. Another goal of the event, say event organizers, is to draw attention to their local apples, which they call the most delicious apples in the world. Says organizer Maricarmen Garcia, "It is the longest tart in the world but this time on the longest avenue in the world. We are happy to bring the tart here to the people of Buenos Aires for them to try. It is exquisite. It is homemade and we are promoting that we have the best apples in the world." About twenty-four thousand people helped to consume the tart.
  8. Celiac.com 12/23/2011 - A research team recently sought to figure out the basic level of awareness of celiac disease and gluten sensitivity among the general public and trained and untrained chefs, and to compare dining habits of people with celiac disease and gluten-sensitivity to those of the general public. In face-to-face interviews, and via internet survey, researchers asked people about their knowledge of celiac disease and gluten sensitivity. They also asked people with celiac disease and gluten sensitivity about their dining habits, in addition to asking chefs about their levels of training and education. In all, the researchers surveyed 861 persons from the general public. They found that 47% had heard of celiac disease, 67% had heard of gluten sensitivity, and 88% had heard about peanut allergy. They surveyed 790 people with either celiac disease (82%, n=646), or gluten sensitivity (18% n=144). The vast majority of respondents to the study were female, making up 83% of those with celiac disease, and 90% of those with gluten sensitivity. Those with celiac disease and gluten sensitivity were older than the general public respondents, 57% of the patients were over 45 years of age compared with just 32% of the general public respondents (p< 0.0001). The 200 chefs who were surveyed showed a much higher awareness of celiac disease, with 77% of chefs having heard about celiac disease compared to less than half of the general population. Interestingly, many more people in both groups had heard of gluten sensitivity, with 89% for chefs, and 67% for the general population, respectively. Still, the chefs, like the general public, had a tendency to underestimate celiac disease was underestimated by both chefs (56%) and the general public (69%) while peanut allergy was overestimated by 55% of the general public and 60% of chefs. People with celiac disease may not be surprised to learn that a large majority, 63% of the 790 following a gluten-free diet reported avoiding restaurants more, and eating take-out food much less often than the general public. One important finding was that the level of training had a great deal of impact on a chef's knowledge of celiac disease. Overall, trained chefs were much more likely to be familiar with celiac disease compared with untrained chefs (83% vs. 52%) Also, there was a direct connection between the average price of a meal and the likelihood that the chef was familiar with gluten-free concerns. The more expensive the restaurant, the more likely the chef was familiar with celiac disease and gluten-free concerns. Restaurants with an average check below $25 had a 64% rate of awareness, while the rate for restaurants with a check over $65 had a 94% awareness of gluten-free concerns (p<0.0001). In general, the survey team was impressed by what they saw as a fairly high degree of awareness of gluten-related concerns. Interestingly, both trained and untrained chefs were more likely to have heard of gluten sensitivity than of celiac disease. Most people with celiac disease avoid restaurants, and eat out the home far less often than the general public. Still, many do eat out, and they do so by making sure they get their needs met. The simple take away is that chefs are generally pretty aware of gluten-intolerance and celiac disease, and that chefs with better training and higher-end restaurants are more likely to deliver a gluten-free dining experience. As always, communication goes a long way toward ensuring a pleasant and successful restaurant experience for anyone with celiac disease. Knowing your needs, sharing your concerns, and asking your server and/or chef about their gluten-free options and preparation methods can go a long way toward a smooth gluten-free dining experience. Source: http://www.journals.elsevierhealth.com/periodicals/yeclnm/article/PIIS1751499111000527/fulltext
  9. Celiac.com 10/24/2011 - Shannon Ford, of Miami, Florida has been crowned Mrs. United States 2011. Mrs. Ford received the crown from 2010 winner Rachel Juillerat. The award is particularly noteworthy for people with celiac disease and gluten intolerance. Two years ago, Ford was diagnosed with celiac disease, and she now maintains a gluten-free diet. Contestants for Mrs. United States are judged on personality, charitable commitment, evening gown and swimsuit, a judges’ interview and dramatic final live question. In her new role as Mrs. United States, Ford will make appearances across the country, charity events and speaking engagements. By promoting her platform, “1 in 133 – Raising Awareness for Celiac Disease," Ford also hopes to increase celiac disease awareness and to advocate for better labeling of our nation’s food supply. Of her new title, Ford says: “Being Mrs. United States is a huge responsibility. I’m excited to get back to Florida and get to work.” She is scheduled to begin make appearances across the nation, with her first stop being a benefit luncheon for the Easter Seals. Mrs. Ford earned her B.A. in Psychology from Florida International University. She currently works as a human resources manager for major wealth management company. She also serves as a Miami Dolphins ambassador, chosen from former Dolphin cheerleaders to represent the organization and advocate community service. Ford married her husband Ray after dating him for 15 years. They are both avid runners, and Shannon Ford has competed in numerous half and full marathons. Source: http://www.free-press-release.com/news-mrs-florida-wins-mrs-united-states-2011-1313726699.html
  10. Celiac.com 10/07/2011 - In October 2010, Kicking 4 Celiac Foundation Executive Director Craig Pinto made 717 regulation field goals in a 12 hour period to set a Guinness World Record. That success marked the beginning of the foundation's annual “Kicking4Celiac” event, which raises money and awareness for celiac disease. The second annual “Kicking4Celiac” event is set for October 9th, when Pinto will return to the football field at Bethpage High School and attempt a second world record, this one for the “Most Field Goals made in 24 Hours.” Pinto must make a at least 1,000 field goals in 24 hours to break the existing world record. This year’s event will help to grow the foundation's scholarship program, which, beginning in early 2012, will award scholarships to college-bound students with celiac disease. Speaking of last year's event, Pinto said that "the progression mirrored what I went through with celiac disease. The initial mental stress, the physical stress, but the hard work to make it through, and come out on top. It is something I want to continue to do, to break people’s thoughts and stigmas that when you’re diagnosed with celiac disease that your physical abilities will change." Pinto added that the “support from people reaching out was absolutely amazing, and it just showed how strong the celiac community stands behind and supports each other. We’re in this together.”
  11. Celiac.com 05/21/2011 - May is National Celiac Disease Awareness month, as designated by the National Foundation for Celiac Awareness (NFCA), a 501©(3) non-profit organization dedicated to raising awareness and funding for celiac disease. That means a month of official and unofficial events to promote awareness of celiac disease. A few of the official events scheduled for National Celiac Disease Awareness month include: 1) Gluten-Free Food Labeling Summit The first annual Gluten-Free Food Labeling Summit will gather legislators, celiac disease researchers, gluten-free community leaders and food corporations as they call upon the Food and Drug Administration (FDA) to enforce a standard for safe and effective labeling of gluten-free food. When: Wednesday, May 4, 2011 Time: VIP Reception for sponsors, 5-8:30 p.m. Where: Embassy Suites Convention Center 900 10th Street Northwest Washington, DC 20001 2) #GFchat on Twitter (featuring Ask the Dietitian experts): May 10, 17, 24, 31 - Chats will take place on Tuesday evenings at 8 p.m. ET/5 p.m. PT. Those interested in participating should follow and use the hashtag #GFchat to keep the conversation in one central steam. 3) LIVE with Jill's List: Should You Be Gluten-Free? May 11 - Join LIVE with Jill's List to listen to and CHAT LIVE with celiac and gluten-free experts: * Mark Hyman, MD - NY Times Best Selling Author and family physician * Alice Bast - Founder and President of the National Foundation for Celiac Awareness * Jill Brack - Founder of GLOW Gluten Free Cookies 4) Celiac 60+: Meeting the Needs of the Mature Celiac This free online webinar will feature Veronica Alicea, M.B.A., R.D., a well-known dietetic consultant in the celiac and gluten-free fields, leading an hour-long discussion on the rising number of celiac diagnoses in the mature adult population. Wednesday, May 18th at 1 pm ET/10 am PT. 5) Catwalk for Celiac All proceeds will be donated to the National Foundation for Celiac Awareness. When: Thursday, May 19, 2011 Time: 6-10:30 p.m. Where: Fiesta Banquet Hall 255 Route 17 S Wood-Ridge, NJ 07075 Cost: $35 for students, $42 for adults 6) Celiac Awareness Night at the Mets Join the National Foundation for Celiac Awareness and R.O.C.K. Long Island for Celiac Awareness Night at the Mets. The New York Mets will be taking on the Philadelphia Phillies, and catch all the action from special sections in the Left Field Landing - tickets $35 or $20 each. Gluten-free concessions will be available. When: Friday, May 27, 2011 Time: 7:10 p.m. Where: Citi Field Flushing, NY Corporate promotions for Celiac Disease Awareness Month include: 7) Rudi's Unbelievably Good Gluten-Free Recipe Contest Submit your original gluten-free recipe using Rudi's Gluten-Free Bakery products (including their new buns and pizza crust) for the chance to win a trip to Colorado and star in an Alternative Appetites video with Dan Kohler! Some Important Contest Dates: April 18 – May 20: Recipe submissions accepted on the recipe contest tab on the Rudi’s Gluten-Free Bakery Facebook page April 18 – June 6: Online voting open to the public June 13: Top 3 finalists announced June 24: Top 3 finalists compete in Final Recipe Cook-Off at Restaurant 4580 in Boulder, Colorado. Check your local gluten-free or celiac disease support group for details on events in your area. Or get together with friends and family and create your own fun for Celiac Awareness Month!
  12. Celiac.com 09/13/2010 - Happy National Celiac Disease Awareness Day! Here at Celiac.com we sometimes forget this special day because to us every day is Celiac Awareness Day! For those who don't know, each September 13th is the official "National Celiac Disease Awareness Day" due to United States Senate Resolution (S.Res. 563), which was adopted in 2006. September 13th was chosen for this important day because it is Dr. Samuel Gee’s birthday—who was the first medical doctor to discover a link between celiac disease and a person's diet, way back in the late 1800's. He once said "if the patient can be cured at all, it must be by means of diet." Celiac.com hereby proclaims that forthwith on this day EVERYONE should eat gluten-free—and everyone should also be sure to hug a celiac! Oh, and don't forget to give thanks to Dr. Gee before eating that gluten-free food—after all, if it weren't for him we would probably all be pretty miserable right now! More information about Dr. Samuel Gee can be found at: https://www.celiac.com/articles/77/1/The-Celiac-Affection-in-Children-1---Edinburgh-Med-Journ-Vol-XXXV-NOIV-Oct-1889-pp-321-330/Page1.html http://www.whonamedit.com/doctor.cfm/1312.html http://www.aim25.ac.uk/cgi-bin/search2?coll_id=7101&inst_id=8 Source: http://www.csaceliacs.org/documents/CeliacAwarenessDaySamuelGee.pdf
  13. Celiac.com 05/17/2010 - Scott Adams and Ron Hoggan went on live radio last Saturday on the Love By Intuition Show with host Deborah Beauvais (Dreamvisions 7 Radio Network) in support of Celiac Disease Awareness Month. The show is broadcast live from Boston, MA on 1510 AM Revolution Boston, a progressive 50,000-watt station reaching 5 states locally, and on Energy Talk Radio in San Francisco, and it reaches over 1,000,000 listeners. The show will be re-broadcast several times and will hopefully reach many more listeners. The podcast is attached and can be downloaded or listened to from our server. Dreamvisions 7 Radio Network is holistic healing radio network with an eclectic group of radio hosts all with the common goal to help humankind by offering different modalities or programs combined with tools to bring awareness, joy and love to their listeners. Their vision is to continue to syndicate the Network of shows by having additional affiliates both terrestrial and Internet.
  14. Celiac.com 04/29/2010 - May is designated as National Celiac Awareness Month. As such, I thought it would be a great opportunity to explore the history of celiac disease. Most people think of celiac disease as a modern day ailment, which predominantly affects those of European descent and in Westernized societies. However in my research, I found that the best place to start when referencing the history of celiac disease, is actually the beginning of humans. In the beginning of humans, known as the Neolithic Period, humans were hunters and gatherers and primarily survived on fruits, nuts, and meat when available. During the Neolithic Period, humans evolved and began cultivating plants which quickly led to the agricultural revolution. With the agricultural revolution came a myriad of food antigens, such as dairy, eggs and processed grains. It was during this time that celiac disease was born. Some 8,000 years after making its debut, celiac was identified and named by a Greek physician known as Aretaeus of Cappadocia. In the first century A.D., Aretaeus documented information about, “The Coeliac Affection.” He named celiac disease, “koiliakos” derived from the Greek word for “abdomen”. In his descriptions of celiac Aretaeus stated, “If the stomach be irretentive of food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs”. While a name had been given to the disease, people with celiac still had no idea how to heal from the condition, and were still vastly unaware of the cause for their ailments. It wasn't until the early 19th Century that Dr. Mathew Baillie published his observations on celiac disease which he sited as, 'chronic diarrheal disorder causing malnutrition and characterized by a gas-distended abdomen'. In his observations, Dr. Baillie documented that some of his patients appeared to benefit from eating only rice. However important Dr. Baillie's findings were, they still went largely unnoticed by the medical community until 75 years later when an English doctor known as Dr. Samuel Gee, came into the scene. In 1888 Dr. Gee was working for the Great Ormond Street Hospital for Children in the United Kingdom when he demonstrated a set of clinical trials performed on children and adults with celiac disease. Dr. Gee was quoted as saying, “To regulate the food is the main part of treatment. The allowance of farinaceous foods must be small, but if the patient can be cured at all, it must be by means of diet.” As an example he sited a very sick child that was fed the best Dutch mussels every day during mussel season. The child thrived during mussel season, but as soon as the season was over, the child regressed and died before the next mussel season. In the 1920's, Sidney Hass presented the “Banana diet”. Sydney successfully treated 8 out of 10 children suffering with celiac disease using the banana diet. He claimed to have cured the 8 children that were on the banana diet, but the other 2 children not on the banana diet, died. The banana diet included the elimination of all bread, crackers, potatoes and cereals and for several decades, the banana diet was the only cure for celiac disease. Another important marker in the history of celiac disease were the findings by Dutch pediatrician, Dr. Willem Karel Dicke. In 1953 Dr. Dicke wrote his doctoral thesis for the University of Utrecht based on his observations that the ingestion of wheat proteins specifically, and not carbohydrates in general, were the cause of celiac disease. He was able to exemplify his findings based on bread shortages in the Netherlands during World War II. During the bread shortages, he found that the health of children with celiac improved tremendously. However, when the allied planes began dropping bread to the Netherlands, the same children quickly deteriorated. In the 1960's, it became evident that the best method for testing for celiac disease was to perform a biopsy. However, doctors were urged not to diagnose people as having celiac disease until it was proven that gluten was the cause for the damage. To determine if a patient had celiac disease, a biopsy would be performed to evaluate the damage done to the intestines. The patient would then be put on a gluten-free diet. Another biopsy would then be preformed to determine improvement in the intestines. After improvement the patient would be put back on a gluten diet, and another (3rd) biopsy would be preformed to determine reoccurring damages to the intestine, and thus the presence of celiac disease. This method was used for over 20 years as the best method for testing for celiac disease. Then in the 1980's studies by Dr. Stefano Guandalini, showed that the presence of celiac could be found in 95% of celiac cases by performing a single biopsy. In 1990 these findings helped create the new guidelines for celiac testing which were approved by ESPGHAN (European Society for Pediatric Gastroenterology). Also during this time, professionals starting recognizing celiac as an autoimmune disease and also began recognizing the correlation between gluten sensitivity and other autoimmune diseases. Here we are now in the year 2010; thirty years after the medical profession has successfully established the causes, tests and treatments for celiac disease, and thousands of years since celiac first made it's debut. Yet, as far as early diagnosis is concerned, we are still living in the dark ages. In this day and age, knowing what we know about celiac disease, childhood screening for celiac should already be mandatory. It's almost as if, when doctors were told in the 1960's to hold off on celiac diagnosis until they knew undoubtably that gluten was the cause for damage to intestines, they were never told, 'okay, now it's safe to diagnose for celiac'. Unfortunately, many (if not most) doctors still don't know how to appropriately diagnose patients for celiac disease, and therefor they continue to 'hold off' making celiac diagnoses, or misdiagnose regularly. Enforcing mandatory celiac screening in school age children has potential to eliminate the unnecessary suffering of millions of children and adults worldwide. My dearest hope is that we all get to see mandatory celiac testing in this lifetime. If you would like more information on “Celiac Awareness Month,” please check out the links below. The following links are trusted sites that also provide suggestions on how you can get involved and contribute to celiac awareness in your community. Celiac Disease Foundation Celiac Sprue Association Celiac Disease Timeline: Agricultural Revolution - celiac disease is born 1st Century A.D.- Aretaeus named celiac, “ koiliakos” 1st Century A. D.- Aretaeus documented“The Coeliac Affection.” 19th Century- Dr. Mathew Baillie published his observations on celiac 1888- Dr. Gee established the correlation between celiac and diet 1920's - Sydney Hass successfully treated celiac patients with “the banana diet” 1953 - Dr. Willem Karel Dicke confirmed wheat protein to be the cause for celiac disease 1960's - Biopsy established as the most accurate test for celiac 1980's - Dr. Stefano Guandalini established a single biopsy test for celiac 1990 - ESPGHAN established new guidelines for celiac biopsy testing Sources: Impact America's Silent Epidemic
  15. Celiac.com 06/17/2009 - He stands aloof and watches absent-mindedly as the other children queue up for the food. He remembers his mother’s stern warning and the hunger pangs worsen. He knows the even a morsel of the delicious mouth-watering cake will surely make him ill. Meet Mike, he was born with celiac disease. Mike’s parents are well-off and highly educated. According to his mother, Mrs. Kintu, shortly after his birth Mike started showing signs and his parents immediately took him to a European hospital for a check-up. The doctors did an endoscopic exam and Mike was diagnosed with celiac disease. Mike had to stick to a gluten free diet for the rest of his life. Mike’s life was spared. Had Mike been born in a poor family, Mike would have eventually lost his life to celiac disease, just like the increasingly shocking numbers of African infants between the very minor age of 6 months and 4 years that die every year—particularly in the East-African region. The acute lack of awareness and subtle ignorance about the disease leads the devastated parents to think that sorcery or envious neighbors robbed them of their little ones. Mike is alive today and maintains a particularly sparse diet and survives on such food as vegetables, rice, beans, potatoes, small quantities of red meat, and fresh fruits. Granted, this may seem like a rather healthy and outright fulfilling diet for an adult, however, as fate would have it, Mike is also lactose-intolerant. Essentially, this means that, in lay-man’s language, Mike is allergic to milk in its natural form and all its by-products. Celiac disease is a permanent inflammatory disease of the small intestine triggered by the ingestion of gluten-containing cereals in genetically predisposed individuals. It is a lifelong autoimmune intestinal disorder. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac disease is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with celiac disease. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains such as rye and barley must also be eliminated. Celiac disease was first described in the second century AD by Aretaeus of Cappadocia, a contemporary of the Roman physician Galen, who used the Greek word “koeliakos”, which means “suffering of the bowels”. However, only in 1888 AD did Samuel Gee of St. Bartholomew’s Hospital give the classical clinical description of celiac disease. The cause of celiac disease, also known as celiac sprue, or gluten sensitive enteropathy (GSE), is unknown. Celiac disease occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease. Celiac disease displays itself with the following symptoms: Recurring bloating, gas, or abdominal pain Chronic diarrhea or constipation or both Bone or joint pain Behavior changes/depression/irritability Vitamin K Deficiency Fatigue, weakness or lack of energy Delayed growth or onset of puberty Failure to thrive (in infants) Missed menstrual periods Infertility in male & female Spontaneous miscarriages Canker sores inside the mouth Tooth discoloration or loss of enamel And many others (to see a complete list go to the Celiac Disease Symptoms page).In any case, there is little or no research on this disease in East Africa. The principal ideals behind this article are the commencement of an awareness program, with particular emphasis on celiac disease and any other diseases that are not generally known about in the region. It is important that these are brought to the light and addressed duly by the concerned parties. There is also an urgent need to formally address the problem especially to those that can not possibly afford treatment and are generally ignorant. I am in the process of establishing an awareness campaign concurrently with a patients’ association for celiac disease in East Africa. The association is still in its infant stages and I am appealing for support and any form of assistance. The name of my association is: Creating Celiac Disease Awareness in Africa. Author's Note: The names of the characters in this article have been changed for privacy reasons.
  16. If you would like to learn more about celiac disease genetic testing, or read about my personal experience with Kimball Genetics, be sure to read the following two related articles: Your DNA Results Indicate: Super Celiac! By Scott Adams Understanding the Genetics of Gluten Sensitivity by Dr. Scot Lewey Celiac.com 11/29/2006 - Kimball Genetics, Inc. announces its participation this week at the XII International Celiac Disease Symposium in New York City and its support of the Celiac Disease Center at Columbia University. Kimball Genetics has a strong commitment to celiac disease education and genetic testing for this common, chronic, autoimmune disorder. Celiac disease affects approximately 1% of the U.S. population but is highly underdiagnosed, with less than 10% of cases currently detected. In genetically susceptible individuals with the specific markers HLA-DQ2 and HLA-DQ8, ingestion of gluten-containing grains causes inflammation of the small intestine and leads to malabsorption. Symptoms may be gastrointestinal and/or a wide range of other multi-systemic manifestations such as iron-deficiency anemia, chronic fatigue, osteoporosis, dermatitis herpetiformis, and attention-deficit/hyperactivity disorder. Early diagnosis and lifelong treatment with a gluten-free diet is critical to relieve inflammation and symptoms and to reduce the risk for development of secondary autoimmune disorders such as type 1 diabetes. Silent celiac disease, involving inflammation without symptoms, is also important to detect and treat. Kimball Genetics offers the Celiac Disease DNA Test, a genetic test with increasingly recognized importance in the diagnostic work-up of celiac disease. The test is valuable because it excludes the diagnosis of celiac disease in patients with a negative result, detects family members at risk for the disorder, and is accurate even when the patient is on a gluten-free diet. Both antibody testing and small bowel biopsy require going off a gluten-free diet to gain reliable results if the patient initiated the diet before diagnosis. Kimball Genetics is the only laboratory presently offering celiac disease DNA testing on cheek cell specimens with results available in one day. Dr. Peter Green of the Celiac Disease Center at Columbia University says "Cheek cell testing at Kimball Genetics is convenient and tremendously popular with my patients since it eliminates the need for blood draw. The one-day turnaround time and expert genetic counseling provided with Kimballs service are much appreciated." The Celiac Disease Foundation also recommends Kimball Genetics Celiac Disease DNA test due to these unique features of its service. In concurrence with the National Institute of Healths "Celiac Disease Campaign for Health Care Providers and Public," Kimball Genetics, Inc. conducts ongoing educational efforts including presentations to gastroenterologists, family practitioners, nautropaths, chiropractors, and nutritionists, and assists national celiac support groups. Dr. Annette Taylor and genetic counselors from Kimball have written an in depth review about celiac disease, co-authored by Dr. Peter Green, soon to be published in GeneReviews online. In addition, Kimball Genetics is collaborating with Drs. Xavier Castellanos and Dominick Auciello from New York University Child Study Center and Dr. Peter Green from Columbia University on an exciting new research study to determine the incidence of celiac disease in children with attention-deficit/hyperactivity disorder (ADHD) or learning disabilities. About Kimball Genetics, Inc. Founded in 1994 by Annette K. Taylor, M.S., Ph.D., Kimball Genetics is a national DNA diagnostic laboratory specializing in testing for common genetic disorders that are preventable or can be treated. Known for its unparalleled turnaround time and distinctive focus on genetic counseling and education, the company has a major focus on celiac disease and is at the forefront of education and testing for this disorder. Other major areas of testing currently include inherited hypercoagulability, hemochromatosis, cystic fibrosis, and fragile X syndrome. Soon Kimball will be expanding into pharmocogenomic testing which allows for the personal customization of drug therapy.
  17. Celiac.com 11/28/2006 - The National Foundation for Celiac Awareness (NFCA) is thrilled to announce that CNN Newsroom Anchor Heidi Collins has signed on as the foundation’s official spokesperson. As a fellow celiac and a member of the news media, Heidi will bring a wealth of knowledge to NFCA. Every weekday, Heidi anchors CNN Newsroom from 9am-Noon EST. Previously she has provided in-depth reports for Anderson Cooper 360°, Paula Zahn Now, and The Situation Room, as well as served as a news anchor for CNN’s American Morning. Heidi has received three Edward R. Murrow awards as well as an Associated Press Award in the best documentary category. Heidi’s journey with celiac disease began shortly after she finished graduate school and began her first television job as an anchor at a station in Wichita Falls, Texas. About one year after she started this job, she learned she was pregnant, news that thrilled both Heidi and her husband Matt. The couple kept the secret for quite some time, but finally six months into the pregnancy, Heidi announced on air that she would be having a baby. Sadly, just a few weeks after announcing her pregnancy, Heidi lost the baby. She received very little explanation from her doctors about why the tragic loss had occurred other than from fetal demise. During Heidi’s next television job in Colorado Springs, she developed a near fatal blood clot in her leg. After four months in the hospital and arterial bypass surgery, a vascular surgeon told Heidi she would never be able to have children. The doctor explained that her blood vessels would not be able to handle the strain of a pregnancy. Heidi and Matt were devastated. Heidi’s next television job brought the couple to Denver, where after a lengthy search, they found a high-risk obstetrician who felt that having a child would not be impossible after all. Nine months later, two injections a day of blood-thinner and constant observation by a team of physicians, Heidi gave birth to her son Riley. She says it was the happiest day of her life. However, Heidi continued to deal with stomach pains, severe headaches and anemia. The constant health issues grew nearly intolerable as she moved to CNN’s New York office. She continued visiting doctors until finally after 15 years of one health problem after another, her general practitioner diagnosed her with celiac disease. With one simple blood test, Heidi had found a diagnosis that would allow her to work toward a cure for her chronic medical conditions and an answer as to why her pregnancy had failed. “Through being the spokesperson for the National Foundation for Celiac Awareness, I hope to significantly reduce the time it takes for people with celiac disease to be accurately diagnosed and empower people to reclaim their health and restore their lives,” Collins said. “It is through the power of my personal story and my ongoing struggle with celiac disease that I hope to encourage people to get tested and make a positive change in their lives.” The National Foundation for Celiac Awareness (NFCA) is a non-profit organization dedicated to raising celiac awareness and funds for research. NFCA is made up of professionals, medical specialists, and volunteers—all dedicated to working with leading researchers around the world to better understand celiac disease. Visit www.celiaccentral.org or call 202-904-7865 for further information.
  18. Celiac.com 08/31/2006 - On July 27, 2006, Representative Nita Lowey (D - NY) introduced H.Con.Res. 457, which, if passed, would recognize the month of May as national “Celiac Awareness Month.” The bill also requests an increase in federal funding for celiac disease research. Rep. Lowey was the driving force in Congress in support of the Food Allergen Labeling and Consumer Protection Act that passed in 1994, which requires food manufacturers to list the top eight allergens on their products’ ingredient labels. Celiac.com supports Rep. Lowey in her efforts to raise celiac disease awareness, and asks you to get involved. Please contact your representatives in congress and ask them to support H.Con.Res. 457—to do so simply visit: http://capwiz.com/celiac/issues/bills/?bill=8945821
  19. Celiac.com 07/31/2006 - The National Institutes of Health (NIH) today announced the launch of a campaign to heighten awareness of celiac disease, an autoimmune disorder that interferes with the absorption of nutrients from food. The campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease. “We now know that celiac disease is more prevalent that previously thought — affecting nearly 1 percent of the U.S. population — and remains under-diagnosed,” said Griffin P. Rodgers, M.D., acting director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH institute leading the effort. “Through the campaign, we hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients.” Developed by the NIDDK, with coordination among the professional and voluntary organizations working on celiac disease, the campaign offers materials and resources for health professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The campaign offers fact sheets, booklets, practice tools for health professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease. Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. Symptoms of celiac disease range from gas, diarrhea, and abdominal pain, to delayed growth, certain skin rashes, infertility, and osteoporosis. Treatment for celiac disease is adherence to a gluten-free diet. “One of the challenges with celiac disease is the vast array of symptoms associated with the disease,” said Stephen P. James, M.D., director of the Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. “We are hoping to educate health professionals and the public that celiac disease is not only a gastrointestinal disease.” The NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on diabetes; endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans. The National Institutes of Health (NIH) — The Nations Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. CONTACT: Melissa McGowan 301-496-3583
  20. Celiac.com 03/29/2005 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced today the findings from a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (celiac disease) in children. The survey was conducted by CDHNF in partnership with Epocrates, Inc., using the Epocrates Honors&REG; Market Research Panel. The survey results supported the clear and urgent need to promote awareness of the individuals at risk, the associated conditions, the proper method of screening for celiac disease, and the necessary step of confirming the diagnosis with a small intestinal mucosal biopsy. Regarding the diagnosis of celiac disease, only 16% of respondents chose the most appropriate first line serological screening test for celiac disease, which is the IgA-anti-human tissue transglutaminase antibody. If the patient has positive serology for celiac disease, the majority of the survey respondents did not recognize the need to confirm the diagnosis with an intestinal biopsy before starting a gluten free diet. Up to 50% of individuals screened with an anti-gliadin antibody test may not have celiac disease at all, particularly if the person has atypical symptoms. The survey suggests that some people unnecessarily are recommended a gluten free diet, while others at risk are not being properly screened, identified and placed on a gluten free diet, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Martha Dirks, MD, Sainte-Justine Hospital, University of Montreal, Canada. It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained, added Dr. Dirks. In terms of recognizing symptoms, two thirds of the respondents felt that they were aware of at least three GI related symptoms of celiac disease and could correctly identify short stature and iron deficient anemia resistant to oral iron as manifestations of celiac disease. However, the survey also revealed there is a lack of awareness about associated conditions with celiac disease. For example, an average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions. The level of knowledge of celiac disease is not what we like it to be. The survey illustrates that clear educational initiatives are needed to promote appropriate testing of persons at risk for celiac disease such as the recently released NASPGHAN Celiac Guidelines, NIH Consensus Conference, and our CDHNF grand rounds program, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Stefano Guandalini, MD, University of Chicago. Dr. Guandalini added that an area definitely in need to be better known is that of screening for family members of patients with celiac disease. With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended. The survey indicates the need to provide medical professionals with as much information as possible about celiac disease. As a result, Epocrates has teamed up with CDHNF to distribute the CDHNFCD guidelines, gluten free diet guide and other educational resources to over 140,000 medical professionals via their DocAlert&REG; messaging technology which will allow medical professionals to save the guidelines summary to their hand-held device and request additional information via e-mail. Epocrates continues to focus on patient care and safety, and our members look to us to provide the latest, most current information on drugs and diseases such as that provided through this campaign. We are pleased to support this effort to promote child health and wellness, said Kirk Loevner, Epocrates President and CEO. The NASPGHAN and CDHNF survey was conducted through the Epocrates Honors market research panel, which enables healthcare professionals to share their clinical expertise. Typically, this research consists of online surveys that take between 10 to 45 minutes to complete. Criteria to participate vary by study. In exchange for their participation, users receive an honorarium. Fifty-seven of the nations largest healthcare market research companies conduct hundreds of studies annually by accessing the industry-leading Epocrates Honors panel of more than 121,000 U.S. physicians and 254,000 allied healthcare professionals including physician assistants, nurse practitioners, RNs, dentists, pharmacists and others. About NASPGHAN and CDHNF The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, founded in 1972, is the only society in North America and the largest in the world, dedicated to serving the Pediatric Gastroenterology and nutrition communities. NASPGHAN was established to advance the understanding of the normal development and physiology of diseases of the gastrointestinal tract and liver in infants, children, and adolescents, and to foster the dissemination of this knowledge through scientific meetings, professional education, public education, and interaction with other organizations concerned with Pediatric Gastroenterology and nutrition. Visit our website at www.naspghan.org. The Childrens Digestive Health and Nutrition Foundation was established in 1998 by NASPGHAN. CDHNF is the leading physician source of information on pediatric gastrointestinal, liver and nutritional issues. CDHNF is dedicated to improving the care of infants, children and adolescents with digestive disorders by promoting advances in clinical care, research and education. In addition to the pediatric GERD education campaign, CDHNF also leads a campaign on Celiac Disease. Additional information on CDHNF and its campaigns can be found at www.cdhnf.org. About Epocrates, Inc. San Mateo, CA-based Epocrates is transforming the practice of medicine by providing innovative clinical tools at the point of care and deploying leading-edge technologies that enable communication. The company has built a clinical network connecting more than 1 in 4 U.S. physicians, students at every U.S. medical school and hundreds of thousands of other allied healthcare professionals with other healthcare stakeholders. Epocrates products have shown a positive impact on patient safety, health care efficiency and patient satisfaction.
  21. Summary prepared by Mardena Waller Here is the Summary on the Bioengineered Foods and Celiac Awareness meeting February 24, 2001 at Caltech, sponsored by CDF - Burbank, Glendale, Pasadena Connections Group. Pasadena (CA) Wild Oats provided free gluten-free foods, and is a stand-out, and nearly stand-alone, market promoting education on gmo-free foods. Let them know you appreciate what they are doing, and tell them you support them. Ask them for a copy of Genetically Engineered Foods - Are They Safe? (Scientists explain health and environmental risks.) Heres an example of what Marshall Crostowski cautioned: Question #1: Are biogeneticists working to reduce or eliminate gluten proteins adversely affecting celiac suffers? Short Answer: Glutens are mainly found in wheat and the related cereals barley, rye and triticale and are important components not only in baked goods but also in a large number of processed food, medicines and cosmetics. Most of the current genetic modifications are to increase the quantity and quality of gluten and to introduce wheat gluten genes into other crops such as barley, maize, sorghum, tobacco, and perhaps rice. There may be some research in Europe toward eliminating or neutralizing wheat gluten or the bodys immunological reaction to it. Gluten Biotech Watch recommends when you e-mail food companies asking about ingredients, tell them you dont want gmo foods, and ask them to go (and label) gmo/gluten-free! Groups and individuals can support companies that do, boycott companies that dont. Make some noise! To help, E-mail GBW at noyodelling@yahoo.com (we DO have a sense of humor!). Robert Jeffers, Ph.D., and Marshall Crostowski will lead GBW to monitor gmo/gluten research.
  22. The following is a letter that was sent to me by Wendy Wark of Exton, PA. We urge you to create your own letter based on this example, and send it to your local media, specifically to the health editors of newspapers, magazines and TV stations. LETTER TO EDITOR September 1, 200_ Dear Health Editor: OCTOBER IS CELIAC AWARENESS MONTH! Please consider a story about a health condition called Celiac Sprue. Celiac is a mystery illness thats becoming less of mystery and finally becoming more correctly diagnosed. Celiac Sprue, also known as gluten intolerance, is a permanent, lifelong intolerance to gluten (a protein found in wheat & other grains). Considering our diet is primarily a wheat-based diet, this condition touches many Americans. A HOT TOPIC! As many as 1 in 150 Americans are expected to have the condition. Celiac Sprue is an up & coming hot health topic; one that your readers will find interesting and who may have the condition themselves or someone in their inner-circle. The reason its Hot ... * In July 2000 Rich Gannon, Quarterback for Oakland Raiders, has become the new national spokesperson for Celiac Sprue. * The media is beginning to report on the guiles of gluten as seen in Newsweek (noted on Research Information Reference Sheet). * The University of Maryland is now conducting a 5-year nationwide study to prove that the U.S. has the frequency similar to Europe - about 1 in 150 persons (see enclosed studys preliminary findings). Fortunately in the 1950s Celiac Sprue was identified, but its unfortunate that the road has been slow to get the medical community, and the general public, informed. CELIAC HOT POINTS There are so many points why Celiac Sprue awareness is important: 1 - There are other diseases occurring less frequently that get more media attention. For instance, Lyme Disease ... 16,000 cases each year Lou Gehrigs Disease... 30,000 cases Parkinsons Disease ... ~ 500,000 affected Americans Celiac Sprue (Gluten Intolerance) ... ~1,000,000 affected Americans 2 - Many people are undiagnosed and suffering daily with painful Celiac symptoms such as abdominal pain, diarrhea, fatigue and depression. 3 - Many people are misdiagnosed due to the medical profession not recognizing the prevalence of this condition. Many physicians either know very little about it or nothing at all. 4 - Concise food labeling is critical by food manufacturers so consumers arent contaminated with forbidden ingredients. For instance, food manufacturers use natural flavorings which can be anything under the sun. Unclear labeling is not only a problem just for Celiacs, but anyone with any type of food sensitivity. 5 - There is an exorbitant cost to insurance companies as people go for years trying to uncover their mystery illness. In the case of our son, we incurred about a $60,000 surgery and hospital bill which could have been avoided; with an earlier, correct diagnosis we would have incurred only a fraction of the medical fees. The steps to diagnose Celiac Sprue first is a blood test to screen antibodies. If that proves positive, then an outpatient endoscopy is conducted. WHY SPREAD THE WORD? Both common folk along with the medical profession needs to learn about this condition. Fortunately there is a rather simple cure for this eluding condition ... a gluten-free diet. But unless a physician can spot and test for Celiac Sprue in their patient, the patient doesnt avoid gluten-filled foods. The treatment is uncomplicated ... a dietary change by removing the offending gluten! No surgery or drugs needed! Please consider sharing this condition with your audience. Probably many of your readers will have some of the symptoms mentioned, or will know about family or friends that are suffering. Im committed to educating others about this condition, so much so, that Ive written a book Living Healthy With Celiac Disease. Its filled with information to help get newly-diagnosed persons quickly on the road to recovery. Let me know if you would like a complimentary copy. If you have interest in this, please contact me at 610 363-5049 for further information. Ive included a Description of Celiac Sprue and our Personal Story. Ive also enclosed a page with Research Information Resources along with other backup information. Thanks for the consideration. Sincerely, Enclosures Description of Celiac Sprue Personal Story Research Information Resources Study Findings from University of Maryland Study (http://www.celiaccenter.org) DESCRIPTION OF CELIAC Description of Celiac Sprue Prepared by Wendy Wark September 1, 2000 Celiac Sprue is a condition causing damage to the small intestines resulting from gluten ingestion. The damage occurs when the immune system launches an attack against the gluten (the forbidden protein found in wheat, rye, barley and oats). The damaged intestinal lining and villi prevents the small intestines from absorbing food properly. Another sister condition caused by gluten intolerance is Dermatitis Herpetiformis, a skin disorder presented as an itchy rash. A person with Celiac Sprue has a chronic condition that results in a variety of outcomes. Symptoms are quite varied and can be subtle to severe, however the typical ones include abdominal pain, bloating, diarrhea and/or constipation, weight loss (although weight gain can occur too), malnourishment, vitamin deficiencies, anemia, osteoporosis, depression, fatigue, irritability and fogginess to name a few. There is no classic Celiac; each case is quite individualized. This wide range of symptoms makes Celiac Sprue tricky to diagnose. According to Dr. Peter Green, Gastroenterologist at Columbia University, less than 50% of persons with celiac disease have classic symptoms. Celiac Sprue is a genetic condition that falls in the autoimmune disease family which includes diabetes, lupus, multiple sclerosis and rheumatoid arthritis. The autoimmune disorders can be rather hard to diagnose with symptoms often times simulating other conditions. For instance Celiac Sprue is often misdiagnosed as diverticulitis, irritable bowel syndrome, fibromyalgia, lactose intolerance and chronic fatigue syndrome. These incorrect diagnoses could actually be symptoms of celiac disease! Further, those who suffer with fatigue, irritability and depression are often diagnosed with psychological disorders. In Europe where Celiac is more well-known, persons typically get diagnosed within 6 weeks of symptoms occurrence. Sadly in the United States, persons average over 10 years(!) from onset of Celiac symptoms to diagnosis. Once a person gets diagnosed, the treatment is simply removing gluten from the diet. No surgery or drugs are needed. When the gluten trigger is removed, the body heals the intestinal damage. OUR PERSONAL STORY Our Personal Story Wendy Wark September 1, 2000 AN ONCOLOGY SCARE THAT RESULTS IN A GIS TRIUMPH! CT scans certainly are a good diagnostic tool ... most of the time. But there are times that what you see on the scan isnt exactly whats happening. After a CT scan, my 15-month old son was diagnosed with a finger-like cancer spreading through his abdomen. Within two days of this diagnosis, he was in surgery to investigate the massive tumor and to take further bone marrow biopsies. What was a medical marvel to the physicians (and a miracle to our family!) was upon entering his abdomen there was no cancer at all. What did appear were high numbers of clustered swollen lymph nodes masquerading as a massive tumor. So, cancer was ruled out, but now what? What was causing the lymph-node havoc in our childs gut? Directed to the hands of the Gastroenterology department, testing uncovered that our son had Celiac Sprue, also known as gluten intolerance. His body produced the swollen lymph nodes because it was vehemently reacting to the invading gluten. The condition actually causes a bodys immune system to attack its own tissues (common in autoimmune disorders like diabetes, multiple sclerosis and rheumatoid arthritis). The attack damages self-tissue in the small intestinal lining and villi. Weve had a happy ending to our trauma, the offending gluten has been removed from our sons diet. He now follows a lifetime gluten-free diet and is perfectly healthy and happy. RESEARCH INFORMATION RESOURCES ARTICLES Celiac Disease National Digestive Disease Information Clearinghouse, 4/98 updtd 7/13/99 http://www.niddk.nih.gov/health/digest/pubs/celiac/index.htm Celiac Disease and Gluten Sensitivity by Carol E. Semrad, MD Columbia University, 1995 http://cpmcnet.columbia.edu/dept/gi/celiac.html Celiac Disease Not As Uncommon As Once Thought , Researchers At Wake Forest Science Daily, 1/28/00 http://www.sciencedaily.com/releases/2000/01/000128071928.htm Celiac Disease: When Food Becomes the Enemy MayoClinic Health Oasis Newsletter, 10/23/98 http://www.mayohealth.org/home?id=HQ00393 Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD, University of Texas Medical School at Houston American Family Physician Journal, 3/1/98 http://www.aafp.org/afp/980301ap/pruessn.html NFL Pro Bowl Quarterback Rich Gannon Launches National Celiac Disease Awareness Campaign Press Release http://www.newswise.com/articles/2000/7/celiac3.mdm.html The Perils of Pasta by Anne Underwood Newsweek, 10/11/99 Rich & Shelley Gannon Transcript, 2/22/00 PlanetRx.com http://www.planetrx.com/community/specialguests/gannon022200.html Study Findings from University of Maryland http://www.celiaccenter.org The Widening Spectrum of Celiac Disease by Joseph A. Murray, MD The American Journal of Clinical Nutrition, 3/99 http://www.ajcn.org/cgi/content/full/69/3/354 NATIONAL ASSOCIATIONS, SUPPORT GROUPS & SERVICES American Autoimmune Related Diseases Assoc. Washington Office 750 17th St. NW, Ste. 1100 Washington, DC 20006 202 466-8511 800 598-4668 literature requests http://www.aarda.org American Celiac Society Dietary Support Coalition 58 Musano Court West Orange, NJ 07052-4103 201 325-8837 Canadian Celiac Association 6519-B Mississauga Road Mississauga, Ontario L5T 1A6 Canada http://www.celiac.ca 416 567-7195 416 567-7191 fax Celiac Disease Clinic Univ. of California San Diego Campus at La Jolla 9500 Gilman Dr. La Jolla, CA 92093 619 534-4622 * Celiac Disease Foundation 13251 Ventura Blvd., Suite 3 Studio City, CA 91604-1838 818 990-2354 Elaine Monarch, Exec. Director http://www.celiac.org * Celiac Sprue Association / United States of America, Inc. (CSA/USA) PO Box 31700 Omaha, NE 68131-0700 http://www.csaceliacs.org 402 558-0600 WEB RESOURCES Celiac Disease and Gluten-Free Diet Support Page https://www.celiac.com/ Coeliac Society of the UK email: admin@coeliac.co.uk http://www.coeliac.co.uk The Gluten-Free Page Celiac Disease/Gluten Intolerance Web Site http://www.panix.com/~donwiss (Don Wisss web site containing a set of links to other celiac web sites.) * The Gluten Intolerance Group of North America (GIG) 15110 10th Ave. S.W., Ste. A Seattle, WA 98166 206 246-6652 Cynthia Kupper, Exec. Director WEB RESOURCE St. Johns University Celiac website http://www.enabling.org/ia/celiac (St. Johns sponsors a newsgroup with over 3000 members worldwide) EXPERTS Mayo Clinic 200 First St. S.W. Rochester, MN 55905 507 284-2511 Dr. Joseph Murray University of Maryland Pediatric GI & Nutrition Lab Baltimore, MD 21201 410 328-0812 Dr. Fasano 410 706-1997 Dr. Horvath Dr. Cynthia Rudert, MD, FACP 2500 Hospital Blvd. - Ste. 210 Roswell, GA 30076 770 475-0903 Dr. Rudert (large practice devoted to celiac sprue) PERIODICALS Scott-Free Newsletter subscribe at www.celiac.com Sullys Living Without Magazine 1840 Industrial Dr., Suite 200 Libertyville, IL 60048 847 816-0301 * The 3 recognized national celiac organizations in the U.S.