Help Us Learn More about Celiac Disease

Virginia Mason and Benaroya Research Institute are conducting research studies to look closely at the immune system in celiac disease. These studies will be done through a biorepository of blood and tissue samples and medical histories from people with celiac disease.

 People living gluten-free must avoid foods with wheat, rye and barley, found in many foods including bread, pasta and beer.

People living gluten-free must avoid foods with wheat, rye and barley, found in many foods including bread, pasta and beer.

Celiac disease can be difficult to diagnosis and has no cure. The biorepository will allow scientists to study the disease and research novel approaches to the diagnosis and treatment of celiac disease, says Elisa Boden, MD, clinical researcher at BRI who is establishing the Celiac Disease Biorepository.  Dr. Boden is also a gastroenterologist at the Digestive Disease Institute at Virginia Mason Medical Center.

Celiac disease occurs when the immune system attacks the small intestine after exposure to gluten (a protein found in wheat, rye and barley).  This causes inflammation and damage to the small intestine, which can prevent the absorption of water and nutrients into the body. Celiac disease is also known as coeliac disease, celiac sprue, non-tropical sprue, and gluten sensitive enteropathy. Celiac disease is hereditary, meaning that it runs in families. About 1 in 10 people with a first-degree relative with celiac disease (parent, child, sibling) will develop celiac disease.

Celiac disease is estimated to affect 1 in 100 people in the United States and its incidence appears to be rising. In addition, 2.5 million Americans are undiagnosed and may be at risk for long-term health complications. Celiac disease can develop at any age, affecting both children and adults. Left untreated, celiac disease can lead to additional serious health problems. These include nutritional deficiencies, anemia, increased risk of infections, osteoporosis, dermatitis herpetiformis (an itchy skin rash), infertility or miscarriage, neurological conditions including seizures and migraines, and intestinal cancers.

About 1 in 10 people with a first-degree relative with celiac disease (parent, child, sibling) will develop celiac disease.

Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. People living gluten-free must avoid foods with wheat, rye and barley, found in many foods including bread, pasta and beer. Gluten is additionally used commonly as a filler in many processed foods. With the increased marketing and development of gluten-free foods, a gluten-free diet has become easier to follow. However, many people with celiac disease still find the diet restrictive and difficult to follow, especially when eating outside their home. In addition, the majority of people with celiac disease continue to demonstrate evidence of ongoing intestinal damage even while attempting to adhere to a strict gluten-free diet. Thus, there is a clear need for adjunctive therapies in the treatment of celiac disease.

There are additionally some people who may have “gluten intolerance” without having celiac disease. These patients may experience symptoms of abdominal pain, bloating, diarrhea or fatigue when they eat a diet containing gluten. While these are common symptoms of celiac disease, these individuals do not have the characteristic small intestinal damage or tissue transglutaminase (tTG) antibodies found in celiac disease. “We do not yet clearly understand what causes non-celiac gluten intolerance,” says Dr. Boden. “Some experts have suggested that many symptoms attributed to gluten intolerance may be caused by FODMAP (Fructose, Olygosaccharides, Disaccharides, Monosaccharides and Polyols)-containing foods that are largely eliminated in gluten-free diets.

“Celiac disease is restricted to people with certain HLA class II genes,” Dr. Boden explains. “About 40 percent of people have these genes but only 1 percent gets the disease. This tells us there are other important genetic or environmental factors that play into the immune reaction in celiac disease. By studying people with celiac disease and healthy people with the same genes, we hope to discover both factors that trigger disease and also those that protect healthy people. We will use this information to develop ways to put the brakes on the immune system to stop it from reacting to gluten. Our hope is to find ways to eliminate the devastating symptoms of this disease and stop damage of the small intestine. ”

Joining the Celiac Disease Biorepository
If you are interested in joining or learning more about the Celiac Disease Biorepository, please call Study Coordinator Kassidy Benoscek at (206) 342-6537, toll-free at  (877) 202-5200 or via email at kbenoscek@benaroyaresearch.org. The biorepository is voluntary. Information is kept confidential, coded with numbers and not names.

For more information visit BenaroyaResearch.org

Comments

  1. Can’t join but glad you are doing this research!

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