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Survey—Many Patients Interested in Medication to Treat Celiac Disease

Photo of a young man talking with a woman. A survey using multiple measures of the impact of celiac disease on a person’s life found that many people suffering from celiac disease are interested in potential medications to treat the condition. Currently, a gluten-free diet is the only treatment for celiac disease.

Survey responses were analyzed from 352 patients with biopsy-confirmed celiac disease who were recruited by a single center and collaborators. Patients were asked whether they would take a medication to treat the condition, if available. Interest was highest among men, older respondents, frequent restaurant customers, those dissatisfied with their weight or concerned with the cost of a gluten-free diet, and those with a worse quality of life. Length of time since diagnosis and response to a gluten-free diet did not appear to increase interest in using medication.

The NIH does not endorse or approve this survey’s findings; they are provided for public information only.

NIH-funded Study Finding: Gene Variants Found Associated with Human Immune System, Autoimmune Disease

Genetics plays a role in immune response, affecting our ability to prevent disease, according to a team of international researchers. The study team discovered that variants in particular genes had very significant effects on the levels of one or more particular types of immune system cells. A number of these genes are also implicated in risk for various autoimmune diseases, including ulcerative colitis, multiple sclerosis, rheumatoid arthritis, and celiac disease.

Understanding the genes affecting immune system cells and risk for autoimmune disease is the first step in developing therapies that are personalized according to an individual’s needs, although more research is needed to further characterize the role genetics plays in the complex dynamics of the immune system, the researchers pointed out.

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December 2013

NIH-funded Study Finding: Risk of Lymphoma Higher in Celiac Disease Patients with Ongoing Intestinal Damage

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Researchers have found that people with celiac disease have a higher risk of developing lymphoma leaving site icon than the general population, a finding consistent with previous studies. Researchers also found that people with celiac disease who had persistent intestinal damage—also called villous atrophy—had an even higher risk of lymphoma compared with those who had intestinal healing. The study, partially funded by the National Institutes of Health (NIH), was published in the August 6 issue of Annals of Internal Medicine.

The study included 7,625 celiac disease patients who had follow-up intestinal biopsies 6 months to 5 years after initial diagnosis. Patients were followed for an average of 9 years after the follow-up biopsy. Overall, patients with celiac disease had an annual lymphoma risk that was nearly three times higher than the general population. Patients with ongoing villous atrophy were three times more likely to develop lymphoma compared with patients whose biopsies showed intestinal healing.

NIH Awards Human Microbiome Project Phase II Grants

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To better understand how and why alteration of the normal microbiome at various body sites promotes diseases, the NIH will fund three innovative research projects for the next 3 years. These projects constitute the second phase of the Human Microbiome Project (HMP), begun in 2007. The first phase of the HMP focused on the composition and genetic potential of the microbial communities of major regions of the body and how these communities differ in health and for various diseases.

Second-phase research teams will use genomics and other “omics” technologies to measure the biochemical activities of these microbial communities. Researchers hope to determine how microbes influence the physiology of the human host within which they reside.

One joint project will examine the microbes in the gut and nose and determine how alteration in certain microorganisms may trigger the development of diseases such as diabetes. A second joint project will assess the populations and physiological activities of gut microbes in people with Crohn’s disease and ulcerative colitis. The National Institute of Diabetes and Digestive and Kidney Diseases will manage these grants.

A third project will study bacteria that live in the vagina and assess the roles these bacteria play in health and disease in pregnant women as well as in their babies, particularly for preterm birth. The Eunice Kennedy Shriver National Institute of Child Health and Human Development will manage this grant.

Study Finding: Celiac Disease Appears More Severe in Patients with Anemia

Researchers have found that people with celiac disease who presented with anemia had more severe disease compared with celiac disease patients presenting with diarrhea. Diarrhea is a classic symptom of celiac disease, whereas anemia is considered to be an atypical manifestation. The study findings were published in Clinical Gastroenterology and Hepatology.

The researchers studied data from 727 patients with celiac disease who were evaluated at a tertiary referral center. Severity of celiac disease was assessed by the degree of villous atrophy and several clinical and serologic parameters. Researchers found that 77 percent of the patients with celiac disease presented with diarrhea and 23 percent presented with anemia. Patients who presented with anemia were twice as likely to have severe villous atrophy and low bone density compared with patients who presented with diarrhea. Presentation with anemia was also associated with a higher level of anti-tissue transglutaminase, an antibody associated with celiac disease.

The researchers also noted sex-specific differences regarding the link between anemia and the various features of celiac disease. Anemia in women with celiac disease was associated with lower cholesterol levels.

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August 2013

FDA Publishes New Gluten-free Labeling Definition

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The U.S. Food and Drug Administration (FDA) published a new regulation defining the term "gluten-free" for voluntary food labeling. This will provide a uniform standard definition to help the up to 3 million Americans who have celiac disease, an autoimmune digestive condition that can be effectively managed only by eating a gluten-free diet.

This new federal definition standardizes the meaning of “gluten-free” claims across the food industry. It requires that, in order to use the term "gluten-free" on its label, a food must meet all of the requirements of the definition, including that the food must contain less than 20 parts per million of gluten. The rule also requires foods with the claims “no gluten,” “free of gluten,” and “without gluten” to meet the definition for “gluten-free.”

Tips for Finding Reliable Health Information Online

Finding accurate, reliable, and current health information online can be difficult and overwhelming. The Internet has a wealth of health information—some information is true and accurate, and some is not.

Here are a few things to keep in mind when visiting a website:

  • Websites should have a way to contact the organization or webmaster. If the site provides no contact information or it is not clear who runs the site, use caution.
  • Beware of claims that offer one cure for a variety of illnesses, such as a breakthrough or secret ingredient.
  • Look for latest findings from research, not an individual’s opinion.
  • Always remember to write down questions to bring to doctor visits.

Several Government resources offer additional tips when searching for online health information:


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NIDDK Healthy Moments Series
Healthy Moments is an annual series of weekly radio episodes featuring National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Director Griffin P. Rodgers, M.D., M.A.C.P. Each week, Dr. Rodgers provides tips on how to prevent and manage a variety of diseases and conditions.

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MedlinePlus Guide to Healthy Web Surfing
This page includes suggestions for evaluating the quality of health information on websites.

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Evaluating Internet Health Information: A Tutorial from the National Library of Medicine
This 16-minute tutorial from the National Library of Medicine (NLM) teaches consumers to evaluate the health information found on the Web.

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FAQ: Reference & Consumer Health Questions
This page from the NLM provides health information and NLM resources based on frequently asked consumer health questions.

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Finding and Evaluating Online Resources on Complementary Health Approaches
This guide from the National Center for Complementary and Alternative Medicine provides help for finding reliable websites, and outlines things to consider in evaluating health information from websites and social media sources.

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Evaluating Online Sources of Health Information
The National Cancer Institute provides a list of questions for consumers to ask when looking for cancer information online. A video from the Federal Trade Commission is included.

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Online Health Information: Can You Trust It?
The National Institute on Aging provides information for older adults on finding reliable sources of health information online.

May 2013

NIH Program Offers Resources to Raise Awareness of Celiac Disease

Celiac Disease Awareness Campaign

May is Celiac Disease Awareness Month. Now is a good time to learn about celiac disease, which affects about one in 141 people in the United States. Many people with the condition remain undiagnosed.

The National Institutes of Health (NIH) Celiac Disease Awareness Campaign seeks to heighten awareness of celiac disease and offers resources for health care professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease.

These resources are available online by visiting the Celiac Disease Awareness Campaign at www.celiac.nih.gov and the National Digestive Diseases Information Clearinghouse at www.digestive.niddk.nih.gov.

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Page last updated April 2, 2014


 

Celiac Disease Awareness Campaign
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