Tag Archives: Recognizing Celiac Disease news

Today is National Celiac Disease Awareness Day in the United States. From the National Foundation for Celiac Awareness website:

September 13 has been dubbed “National Celiac Disease Awareness Day” in honor of the doctor who identified a link between celiac disease and diet. Dr. Samuel Gee, a leader in celiac disease research, was born on Sept. 13, 1839.

A Senate resolution calling for the commemoration gained unanimous approval on Aug. 3, 2010. In marking the awareness day, the Senate “recognizes that all people of the United States should become more informed and aware of celiac disease,” the resolution stated.

Below is the full text of the resoluation, found at OpenCongress.com. Read More »

Below is an important letter by Cleo Libonati, celiac disease author and speaker. She explains why you must be your own health advocate if you wish to be healthy and receive optimal care.

Dear Friend,

For the past three years, I have met with HMOs, pharmaceutical companies, politicians, doctors, dietitians, celiac support groups, and patients across the United States. One thing is abundantly clear. Doctors are not recognizing celiac disease and do not realize how little they know about the disorder.

In 2004, the National Institutes of Health called for education of physicians and other healthcare providers about celiac disease. To date, few efforts have been undertaken and none has succeeded.

The result is missed diagnoses, inadequate follow-up, unnecessary surgeries, improperly prescribed medications and needless pain. During my presentations, I meet many people who think they are receiving good treatment and cannot understand why no one has told them their persisting symptoms are due to simple nutrient deficiencies. Read More »

Gluten Free Works Publishing is helping people with celiac disease kick off a healthier 2010 by offering a $10.00 discount on the highly recommended celiac disease manual, “Recognizing Celiac Disease,” now through January 8th.

“Recognizing Celiac Disease” is the ready celiac reference that thousands of people are using to get well and stay healthy.

“Recognizing Celiac Disease” lists over 300 symptoms of celiac disease and the nutrient deficiencies that cause them both before and after diagnosis. This comprehensive reference will help you understand gluten sensitivity, celiac disease, nutrient deficiencies and how they are affecting you so you can correct them and heal.

Doctors, dietitians, marines, chefs, hairdressers and celiac support groups across the country are using this invaluable tool. You can find dozens of reader letters on the Recognizing Celiac Disease website. Some are touching, some are amazing, but all of them rave about this fantastic resource and the information it gave them that helped them get better and monitor their health.

The list of experts from the most prestigious medical institutions who recommend the work is truly impressive. You can see them here.

“This masterful, comprehensive and easy-to-use resource guide will go a long way in helping folks restore their health and regain their lives, a goal we share. Recognizing Celiac Disease has a permanent place on my desk and I definitely will recommend this well-researched reference manual to healthcare professionals and patients alike.”

-Alice Bast, Founder and Executive Director,
National Foundation for Celiac Awareness

Take advantage of this limited time offer and get your own copy now. You will be happy you did…

Click here for more information and to order Recognizing Celiac Disease.

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“Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached at john.libonati@glutenfreeworks.com.”

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

April 22, 2009, Philadelphia College of Osteopathic Medicine. Cleo Libonati, RN, BSN presented “Celiac Disease Today” to a group of medical students at Philadelphia College of Osteopathic Medicine in Philadelphia, PA.

Libonati’s presentation was attended by first, second and third year students who had many questions about celiac disease symptoms and how to identify at-risk patients.

“It was very encouraging to see such an intense level of interest in celiac disease,” Libonati said afterward. “Specifically, these students wanted to know how they as doctors will see it, how they test for it and educational materials they could give to people with it.”

Student antendees received a complimentary copy of Recognizing Celiac Disease. Special thanks to Daniel Van Riper, president of the Nutrition Group for the invitation to speak and coordinating the event.

“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.

For more information on Recognizing Celiac Disease, visit www.recognizingceliacdisease.com

The University of Chicago Celiac Disease Center has chosen Recognizing Celiac Disease as the supplemental reading material for medical professionals who complete its Preceptorship Program.

Dr. Stefano Guandalini, medical director of the center, recommends the book for both patients and healthcare providers. “The book is useful for prospective patients to determine whether their complaints are consistent with celiac disease. It is also an excellent patient resource for self management, especially in identifying ongoing and future health problems related to celiac disease and bringing them to the attention of their physician for proper treatment. “Recognizing Celiac Disease” is a useful reference that will serve as a helpful tool for health care providers and anyone diagnosed with the disease.”

The University of Chicago Celiac Disease Center’s Preceptorship Program is an on-site intensive 2-day training course for medical professionals. Candidates study under the direction of the Center’s celiac disease experts. The course includes formal instruction, as well as hands-on training. This is the nation’s only such program. More information about the University of Chicago Celiac Disease Center and the Preceptorship Program can be found at www.celiacdisease.net.

“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.

Advance For Nurses Magazine
Vol. 9 •Issue 11 • Page 21

Making the Connection

Underdiagnosed in the U.S., celiac disease can be identified and treated if the condition is understood

By Cleo Libonati, RN, BSN

Celiac disease is a common food sensitivity that can be the underlying source of hundreds of health problems mistakenly attributed to other causes. This insidious disorder has the potential to disfigure, disable and destroy lives at any age. Yet, of the 3 million affected Americans, only 3 percent are diagnosed and treated.1 Prevalence rates are higher in certain populations, such as blood relatives of a person with celiac disease and those with autoimmune disorders.

Unfortunately, people in the U.S. with this condition actively seeking help for their symptoms can go a lifetime without diagnosis and proper treatment. Typically, worldwide diagnosis is faster.
Genetic Susceptibility & Gluten

Celiac disease is also called celiac sprue, nontropical sprue, gluten-sensitive enteropathy or simply celiac by the public.

This immune-mediated disorder stems from an inherited lifelong intolerance to the gluten protein found in wheat, barley, rye and oats. When ingested, gluten resists the breakdown action of normal digestive enzymes into harmless amino acids. Undigested peptides precipitate hyperpermeability of the small intestinal lining (so-called “leaky gut”) to breach the intestinal barrier defense system. In this way, gluten unnaturally gains entrance to the lamina propria.

Within the lamina propria, gluten peptides encounter the enzyme transglutaminase and the local immune system. Transglutaminase deamidates, or breaks off, the rich glutamine residues in gluten. This deamidation creates the toxic molecular compounds, or epitopes, the immune system identifies as foreign.

These epitopes trigger autoimmune antibodies in genetically susceptible individuals. Ensuing inflammation swells affected portions of the small intestinal lining and damages its delicate structures, interfering with its function to finish digestion and absorb nutrients.

While gluten itself is the environmental cause for antibody development, some stressors that can trigger active disease include gluten overload, pregnancy, viral gastrointestinal infection, surgery and severe stress.
Recognizing Celiac Disease

Despite dramatic advancements in knowledge and testing procedures, recognition of this multifaceted disorder is lacking.1Celiac disease often is undiagnosed due to ignorance of the following:

Pathophysiology — The traditional description of celiac disease as an intestinal disorder with malabsorption as the primary defect is a shadow of the real condition.

Prevalence — In contrast to the historic belief celiac disease affected just one in 5,000 individuals, antibody testing demonstrated prevalence of one in 100.

Diagnostic tests — Healthcare providers are unfamiliar with new and improved testing methods.

Manifestations — Many patients do not have diarrhea and wasting symptoms of classic celiac disease. Extraintestinal symptoms predominate in people with atypical symptoms.
How It’s Diagnosed

Diagnosis of celiac disease is made by a positive serologic antibody study and confirmed by histological findings of small-bowel biopsy specimens obtained by endoscopy and improved clinical response following a gluten-free diet.

The single most important step in diagnosing celiac disease is to recognize its myriad clinical features. No single test can definitively diagnose or exclude celiac disease in every individual; there also is a continuum of laboratory and histopathologic results.1

Positive anti-endomysium antibodies and positive anti-tissue transglutaminase antibodies show celiac disease. Positive antigliadin antibodies demonstrate sensitivity to gliadin itself, the gluten in wheat.

Not all patients have positive antibodies at presentation. When symptoms are present but test results are negative, further testing is warranted, including selective immunoglobin A deficiency. In the event the patient started a gluten-free diet prior to testing, suggest a gluten challenge of 3 months or longer in the expectation of antibody development.

Positive small intestinal biopsy shows the degree of villous atrophy, yet this is not foolproof either. The gastroenterologist must be skilled in taking accurate specimens from multiple sites, and the pathologist must be skilled in examining them properly. In addition, damage may be submicroscopic, returning a level not yet detectable by histological examination.

Additional studies include sonogram and genetic testing. Sonogram shows edema and abnormal appearance of the bowel wall. This is especially helpful for children or those who cannot undergo an endoscopy.

More than 97 percent of people with celiac disease share the same genetic human leukocyte antigen (HLA) haplotype markers, HLA-DQ2 and HLA-DQ8. While HLA genotyping is not specific for celiac disease, it has a very high negative predictive value. If the markers are not present, genetic testing essentially rules out the disease.

Annual follow-up testing is warranted for patients with negative test results who continue to show symptoms.
Recognizing Symptoms

There are no typical symptoms of celiac disease, although the most common clinical presentation is unexplained iron-deficiency anemia with or without gastrointestinal symptoms.

Celiac disease, by way of malnutrition, immunity or the direct toxic effect of gluten on cellular structures, has the potential to produce a broad range of symptoms, associated disorders and complications that may affect any organ or body system. Manifestations vary and may appear at any age.

Nutrient deficits are responsible for many seemingly unrelated conditions, such as depression, inability to concentrate, anxiety, insomnia, defective tooth enamel, coagulopathies, hypertension, obesity, anorexia and excessive thirst.

Associated autoimmune disorders may affect any body tissue, including type I diabetes mellitus, hypothyroidism and Grave’s disease, to name a few. Further, severe complications include various cancers such as B-cell non-Hodgkin lymphoma, cryptic intestinal T cell lymphoma and enteropathy-associated T cell lymphoma.

Chronic diarrhea in childhood should provoke screening. Pediatric presentation for celiac disease could involve hypotonia, failure to thrive, growth retardation, short stature, convulsions, poor bone and tooth development, thymic atrophy and delayed puberty.
Treatment

Treatment is a gluten-free diet. Excluding gluten usually results in rapid healing of the small intestinal mucosa, resolution or improvement of nutritional deficiencies, and disappearance of many manifestations of celiac disease.

The gluten-free diet is challenging due to the plethora of gluten-containing foods in the standard American diet. To succeed, patients need detailed diet instruction, including how to read food labels and identify hidden sources of gluten, such as in medications and supplements. Refer patients to a qualified dietitian if possible; otherwise, nurses can teach appropriate information.

Inform patients about community help such as celiac support groups, which offer practical advice on how to shop and cook, and where to dine. Many support groups hold their meetings at local hospitals.
Prognosis

Clinical outcome depends on duration of exposure to gluten. The longer gluten is consumed, the more the body is damaged, and the greater the likelihood of health disorders and complications developing.

Intestinal permeability improves within 2 months of starting a gluten-free diet. Despite a good clinical response, abnormal endoscopic and histologic appearances persist in the majority of patients.2Patients who receive adequate education about celiac disease and treatment with the gluten-free diet are better able to prevent intestinal damage and improve their health by dietary self-management. Clearly, nursing intervention that uncovers hidden celiac disease, provides nutritional education and promotes regular follow-up will considerably improve prognosis. n
References for this article can be accessed at www.advanceweb.com/nurses. Click on Education, then References.
Cleo Libonati is author of Recognizing Celiac Disease, and co-founder, president and CEO of Gluten Free Works Inc., Ambler, PA.
This article copyrighted to Advance For Nurses and can be accessed online at their website at http://nursing.advanceweb.com/Editorial/Search/AViewer.aspx?AN=NW_08may12_n4p21.html&AD=05-12-2008

Check out Britney Glaser’s coverage of Cleo Libonati and celiac disease on KPLC-TV in Lake Charles, Louisiana.  Living with Celiac Disease

The news story below just came out today. See what Dr. Stefano Guandalini from the Celiac Disease Center at the University of Chicago, Alice Bast from the National Foundation for Celiac Awareness and Jacqueline Gomes, the corporate dietitian at Pathmark Supermarkets had to say about “Recognizing Celiac Disease.”

This book was written for people with celiac disease and their healthcare providers. It will definitely help you understand your ongoing symptoms and what you need to do to achieve wellness…  —————————————————Fort Washington Woman Writes Importent Medical Book
Ambler Gazette
Amanda Rittenhouse, Staff Writer
01/16/2008

Fort Washington author Cleo Libonati wrote “Recognizing Celiac Disease” after she was diagnosed with the disease at age 55 when she requested her gastroenterologist to test her. Libonati said she hopes the book will serve as a guide to those who remain undiagnosed.

According to the National Institute of Health celiac disease affects up to 3 million people in the United States.
“I wrote this so that patient can go to doctor and read book and say I have these symptoms. Being able to find out what mineral, vitamin or nutrient are they not absorbing and what is causing all of their symptoms is the real strength of this book,” Libonati said.

Libonati has worked as a nurse in intensive care, recovery rooms, in medical and surgical nursing, taught maternity nursing, conducted staff in-service on medical techniques and is a paralegal in medical research.

Libonati described celiac disease as an inherited immune disorder affected by glutens found in the grains of wheat, barley, rye and oats. When individuals eat food including gluten proteins their digestive systems fail to break down the glutens, she said. Symptoms of celiac disease vary depending on the individual but complications can emerge in the nervous, gastrointestinal, skeletal and reproductive systems. Some experience no symptoms at all.

To treat the disease people should avoid foods like breads, regular pasta, pizza, bagels, danishes, muffins, cookies, pies, and cereals, she said. Libonati said the only treatment for celiac disease is a gluten free diet.

Pediatric gastroenterologist and celiac disease specialist at University of Chicago Celiac Disease Center Dr. Stefano Guandalini said the book is a good patient resource. Guandalini recommends the book to anyone diagnosed with the disease and said the book is well written, accessible and includes a very comprehensive list of symptoms.

“I think its useful for a prospective patient to find out whether their complaints are consistent with celiac disease,” he said. “I also think junior physicians who are not familiar with celiac disease should have this on their shelves. It is a useful source of information.”

Libonati’s 302-page guide serves as a guide to patients and doctors and covers the symptoms and foods that patients can and cannot eat to stay healthy. Libonati wrote the book in a three-year period by accessing medical libraries and analyzing studies on how the disease responds to a gluten-free diet.

“The book is an in depth medical reference that integrates world wide research on celiac disease into one useful resource,” Libonati said.

National Foundation for Celiac Awareness executive director Alice Bast said the average person with celiac disease suffers between nine to 11 years undiagnosed. Bast said Libonati’s book provides readers with an understanding of nutritional deficiencies and said it helps readers understand how a change in diet can improve the health of a person with the disease.

“I think this book is wonderful. The book guides you towards what you can do to improve your overall health and immune system and is really for somebody who wants to take health into their own hands. I recommend it to the medical community and to patients who want to be informed on how to stay healthy and to improve their health,” Bast said.

Libonati said the book includes extensive lists of foods that a diagnosed celiac may or may not have and instructions on how to build a gluten-free diet.

“One of the major issues facing celiacs is not knowing what a food is made of,” Libonati said.

Registered dietitian for Pathmark Stores Inc. Jacqueline Gomes guides customers towards finding gluten-free foods. Overall Gomes said the book has provided her with comprehensive information about the condition and what types of deficiencies a person may or may not have.

“I like it because it gives information what you can have and how you can enjoy it rather than just saying what you can’t have”, Gomes said.

Gomes calls the book user friendly and said it is appropriate for both health professionals and general readers that are able to understand some medical terminology.

“For me it’s a quick and valid source of information that I can use to talk to any of my consumers about the best choices they have for their condition at the supermarket level. This is a very comprehensive source ,” Gomes said.

©Montgomery Newspapers 2008

Find out more about Recognizing Celiac Disease here.