Archive for the ‘News’ Category

 


The debate about autism and the effectiveness of the gluten-free, casein-free diet continues – this time due to irresponsible reporting of the mainstream news media who seem to have chosen sensationalism over objective journalism when covering an important medical paper on gastrointestinal disorders in autism.

This week, a panel of medical experts led by Timothy Buie, MD at Harvard Medical School published a consensus statement on the Evaluation, Diagnosis and Treatment of Gastrointestinal Disorders in Individuals with ASDs (Autism Spectrum Disorders) in the medical journal Pediatrics. You can find the full paper here.

The panel covered 23 topics in a document that is 20 pages in length, dealing with the diagnosis and care of individuals with autism spectrum disorders and gastrointestinal issues. The panel based its conclusions on available information which they agreed was limited and incomplete.

The Key Topic

“Individuals with autism spectrum disorders who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without autism spectrum disorders who have the same symptoms or signs. Evidence based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (GERD) should be developed.”

Some of the other topics include recommendations for the banking of DNA samples, the complexity of diagnostic evaluation when ASD and gastrointestinal disorders present, the need for studies to determine the prevalence of intestinal permeability in neuropsychiatric manifestions of ASD, and the need for large studies to determine the effectiveness of the gluten-free, casein-free diet. (more…)


John Libonati

Celiac Disease Physician Education Program Goes Nationwide

November 11th, 2009 by John Libonati

Libonati_John_Philadelphia_PA

The Celiac Sprue Association - USA (CSA) recently ran the article below in Lifeline, CSA's quarterly newsletter. The CSA-PEP refers to the CSA Celiac Disease and Gluten Sensitivity Physician Education Program.

CSA-PEP Goes Nationwide: Buffalo Physician Praises PEP

Lifeline_CSA-PEP_3rd_Quarter_2009_250x319Thanks to CSA members, CSA-PEP is now available in many doctors' offices across the United States.

Mary Alice Kelly, MD, Buffalo, wrote recently to CSA.

"I have had so many eye opening moments going through the Recognizing Celiac Disease manual. It is so comprehensive, and I give kudos to the monumental task of putting this into a readable text. Lots of patients flash through my mind as I review co-morbid conditions.

There is more than enough material in this CSA-PEP packet to make a physician aware.

I think once you diagnose one or two patients, you include celiac disease in your differential diagnosis. Our problem as physicians is limited office time with patients, so the more organized material I have to offer, the better for them. Comparing your packets to the first homemade packets from the offices of dietitians is a world of difference."

Read the full article here.

About the CSA Celiac Disease & Gluten Sensitivity Physician Education Program (CSA-PEP):

The CSA-PEP was created to increase diagnosis and improve treatment while increasing celiac disease awareness in the medical community and the public. It will provide 60,800 doctors and 10,000 medical students with information and resources that will aid them in identifying, diagnosing and treating people with celiac disease and gluten sensitivity.

To find out more about the CSA-PEP and get involved, visit their website here.

recognizing_celiac_disease_website_cover_132x162 Recognizing Celiac Disease is the definitive guide to understanding, diagnosing and managing celiac disease. It is a reader-friendly, celiac disease reference manual written for both medical professionals and the general public.

For more information visit, www.recognizingceliacdisease.com. ------------------- Author Information: John Libonati, Philadelphia, PA President-elect, Celiac Sprue Association (CSA). Publisher, Glutenfreeworks.com. Editor & Publisher, Recognizing Celiac Disease. John can be reached at john.libonati@glutenfreeworks.com.

John Libonati

Celiac Disease Alert: Six Ways Gluten Can Kill You

November 4th, 2009 by John Libonati

"I only cheat once in awhile. You know, like twice a week..."

Photo: Suite101.com

If you have celiac disease, you damage your body EVERY TIME you ingest gluten. That may sound bad, but it gets worse.

You can DIE from celiac disease in a variety of ways. None of them are fun. Some take longer than others. Some may not kill you per say, but rather they may stop you from enjoying life, make you suffer from chronic pain or limit your potential.

Celiac disease is a deadly serious condition caused by eating what is essentially a poison to susceptible people - gluten proteins in wheat, barley, rye and oats.

Here are just 6 examples how celiac disease from gluten ingestion can kill you: (more…)

Cara Goedecke

Mark your calenders for September 13th

September 14th, 2009 by Cara Goedecke

Cara_Goedecke_Exam_Pic

September 13th marks Celiac Sprue Association's (CSA) Celiac Awareness Day. This provides a great time for people suffering with Celiac Disease to spread awareness to their friends, family, and doctors. The CSA has an awareness packet that is available for download from their website.

Several possible ideas to promote awareness is to take brochures to your doctor and health/fitness clubs. Host a luncheon with gluten free food to your friends and co-workers. Work with a restaurant to develop a gluten free menu.

This provides an ideal opportunity to teach others about the gluten free diet. CSA Logo_180x173

------------------------------------- Author Information: Cara Goedecke

Cara Goedecke - Oklahoma City Gluten free Examiner http://www.examiner.com/x-22374-Oklahoma-City-Gluten-Free-Examiner Oklahoma City Celiac Blog http://www.okceliac.com/blog/ e-mail: caralg520@gmail.com Facebook OKC Celiac: www.okceliac.com

csa-logo The Celiac Sprue Association (CSA) made the initial presentation of its pilot physician education program to Robert Wergin, MD, at the Milford Family Center in Milford, Nebraska. Recently named ‘Family Physician of the Year,” Dr. Wergin is in general practice at the Milford Clinic.

With this presentation, CSA launched the first phase of the most ambitious celiac disease physician education program in United States history – the CSA Celiac Disease and Gluten Sensitivity Physician Education Program (CSA-PEP).

The CSA-PEP was created to increase diagnosis and improve treatment while increasing celiac disease awareness in the medical community and the public. It will provide 60,800 doctors and 10,000 medical students with information and resources that will aid them in identifying, diagnosing and treating people with celiac disease and gluten sensitivity.

The program is designed so individuals have the option, with a donation of $70 or more, to present the CSA-PEP package to their personal physicians so they can receive optimal care.

This program advances CSA efforts to promote the CSA mission statement: “Celiacs Helping Celiacs.”

Materials in the CSA-PEP package include both physician and patient information: National Institutes of Health (NIH) celiac disease materials; information on dermatitis herpetformis; a gluten-free diet guide by Dr. Jean Guest, CSA’s consultant dietitian; the CSA Gluten-Free Product Listing; the medical reference Recognizing Celiac Disease; a current issue of the CSA Lifeline membership newsletter; fact sheets, brochures, patient pamphlets and other CSA publications.

For more information about this opportunity or to get involved with fundraising and distribution, please contact the CSA at 1-877-CSA-4CSA, or visit CSA online at www.csaceliacs.org.

Celiac disease is the most common inherited autoimmune disease in the world. The National Institutes of Health estimates 1% of the United States population has celiac disease, making it more common than breast cancer, autism or type 1 diabetes. Of the 3 million people in the US who have celiac disease, less than 5% are diagnosed. Gluten sensitivity is estimated to affect many more people than celiac disease. Healthcare costs of untreated celiac disease are estimated to run $14.5 to $35 billion per year. The disorder is triggered by ingesting wheat, barley, rye or oats and results in inflammation, tissue damage, and malabsorption of nutrients leading to a host of varied symptoms. The treatment of celiac disease and gluten sensitivity is removing wheat, barley, rye and oats from the diet.

With almost 100,000 contacts, over 9,000 members and 125 local support group chapters across the country, the Celiac Sprue Association (CSA) is the largest member-based 501(c)(3) non-profit organization dedicated to helping individuals with celiac disease and dermatitis herpetiformis worldwide through education, information and research.

csa_celiacdisease_launch_344x259

Dr. Joseph Murray of the Mayo Clinic explains his landmark study that tested blood samples from 50 years ago and compared them to people of the same ages today. The results: 1. Celiac disease is 5 times more prevalent than it was 50 years ago, 2. People with untreated celiac disease are 4 times more likely to die prematurely than the general population. This breaking information shows us that the rate of celiac disease is rising and people must be identified and diagnosed to insure good health. - John Libonati, Editor. Glutenfreeworks.com

John Libonati

Mayo Research Suggests Celiac Disease More Common

July 1st, 2009 by John Libonati

(Editor's Note: The author of the article reprinted below may have meant celiac disease when he wrote "gluten allergies.")

Mayo research suggests gluten allergies more common by Sea Stachura, Minnesota Public Radio July 1, 2009

Rochester, Minn. — Celiac disease -- an allergic reaction to gluten - is four times more common today than it was 50 years ago, according to research conducted at the Mayo Clinic.

Mayo gastroenterologist Joseph Murray says one in 100 people now have the disease.

He says doctors had thought the marked increase was a result of better screening, but the research suggests that celiac disease is truly becoming more common, paralleling other diseases like type one diabetes or allergies.

Murray says that suggests this could be an autoimmune response, or it could be that something has changed about gluten.

"When it's not busy fighting infections in our environment it's up to no good and turns on ourselves or create autoimmunity. That's one theory," he said. "Celiac disease is unusual in that we know the environmental trigger for the disease. You have to eat gluten, the protein from wheat, barley or rye to get the disease. So another possibility is that something changed about gluten."

People with untreated celiac disease are also four times more likely to die earlier than people without the disease. Murray says people of all ages can develop the disease.

Source: http://minnesota.publicradio.org/display/web/2009/06/30/mayo_gluten_allergies/

SimpleComplex_CS.qxp

John and Cleo Libonati, the publishers of Glutenfreeworks.com and the highly recommended celiac disease reference, Recognizing Celiac Disease, are proud to bring you "Understanding Celiac Disease," the continuing education article in the June edition of Today's Dietitian Magazine.

Understanding Celiac Disease provides an overview of celiac disease with a concentration on the pathophysiology, symptoms, nutritional deficiencies responsible for gastrointestinal problems, steps for optimal treatment, and dietary sources of nutrients. This important information will help dietitians learn about celiac disease and how to help people get well.

“Recognizing Celiac Disease” is the acclaimed guide to recognizing, diagnosing and managing celiac disease. Recommended by medical experts and national celiac disease support organizations, it is used by healthcare providers and patients in 15 countries. www.recognizingceliacdisease.com

Today’s Dietitian is the only magazine written specifically for dietitians and nutrition professionals. With a readership of 110,000 Today’s Dietitian magazine is the leading news source for dietitians and nutritionists, covering topics such as diabetes management, long-term care, new products and technologies, career strategies, nutrition research updates, supplements, culinary arts, food allergies, fitness, sports medicine, and much more. www.todaysdietitian.com

trumppic

By Nancy Lapid, About.com Guide to Celiac Disease

Celiac disease has been a topic on not one but two TV shows in the past few days. I hardly watch television, so I'm fortunate to have learned about these episodes from a fellow blogger, the Gluten-Free Optimist. First, the cable network BBC America’s reality show Last Restaurant Standing had an episode (#13) in which competing restauranteurs were required to come up with food for celiac guests (and other “tricky customers”) without advance warning. This episode will be replayed; the schedule is posted on the BBC America site. (more…)

PA Legislature proclaims April ‘Celiac Disease Awareness Month.’

Ambler, PA, April 03, 2009 --(PR.com)-- Legislation passed by the Pennsylvania House of Representatives General Assembly recognizes April 2009 as the state’s official ‘Celiac Disease Awareness Month’. With the passing of House Resolution 153 (HR 153), Pennsylvania takes the lead in raising awareness for celiac disease as the most common and most undiagnosed autoimmune disorder in the United States.

HR 153 was ratified unanimously, 196-0, on March 31st, 2009 with the assistance of its prime sponsor, state representative Craig A. Dally (R).

Geoffrey M. Roche, advocacy chairman for the National Foundation for Celiac Awareness (NFCA) and resident of Bethlehem, PA, collaborated extensively with representative Dally on the creation and development of HR153, and lobbied for its passage in the State House of Representatives.

"I would like to thank my State Representative, Craig Dally, and the entire State House for recognizing the impact this disease has on many Pennsylvanians and for assisting the National Foundation for Celiac Awareness in creating awareness that will ensure individuals with celiac get diagnosed, and correctly manage the disease." says Roche. “I understand first hand the impact this disease has on one's life and the need for education and awareness across our entire nation.”

The entire resolution in its entirety can be read on the National Foundation for Celiac Awareness website, www.celiaccentral.org.

Roche’s role in the successful sanctioning of HR153 and his passionate efforts on behalf of NFCA, stem from his personal experience with celiac disease, having been diagnosed with the autoimmune disorder just 11 months ago.

NFCA founder and president Alice Bast describes HR153 as, "‘The first step in reforming the US health care system in relation to autoimmune diseases, preventive care and chronic disease management.”

NFCA and Roche aim to pass similar resolutions in every state nationwide, providing assistance and resources for citizens working on legislative efforts for the purpose of spreading awareness of celiac disease, a disease which current estimates suggest affect 1 in every 133 Americans. Only 120,000 of individuals with the autoimmune digestive disorder, roughly 1 in every 4700, have been diagnosed.

“Early assessment of celiac is crucial in preventing the onset of complications such as other autoimmune disorders, serious illnesses, and some cancers for individuals with this disease.” says Bast.

Those interested in enacting legislation in their states should contact the NFCA at info@celiaccentral.org, by phone (215) 325-1306 ext.101, or visit the ‘Get Involved’ section on the NFCA website, www.celiaccentral.org for information.

Celiac disease is an autoimmune digestive disease that damages the small intestine and interferes with absorption of nutrients from food. It is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye. Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and some cancers. An estimated three million Americans have celiac disease, but only about 1 in every 4700 with the disease receives an accurate diagnosis. Currently, the only treatment is a lifelong gluten-free diet.

###

NFCA is a 501(c)(3) non-profit organization dedicated to raising awareness and funding for celiac disease that will advance research, education and screening amongst medical professionals, children and adults. Visit www.celiaccentral.org or call 215-325-1306 for further information.

Contact Information National Foundation for Celiac Awareness Whitney Ehret 215-325-1306 whitney@celiaccentral.org www.celiaccentral.org