What You Need to Know about Celiac Disease

By: Alice Bast, President & Chief Executive Officer, Beyond Celiac

May is Celiac Awareness Month. In celebration, Beyond Celiac invites everyone to learn more about this serious autoimmune disease and help those currently suffering. Celiac disease is an autoimmune disorder that affects approximately 1% of the US population, or over 3.1 million people. Yet many remain undiagnosed. Undiagnosed and untreated, celiac disease causes damage to the small intestine and can lead to a range of symptoms including diarrhea, abdominal pain, infertility, anemia, and even certain cancers.

It is important to be aware of the symptoms and seek medical attention if you suspect you may have celiac disease.

Symptoms of celiac disease include:

  • Anemia
  • Anxiety
  • Bloating
  • Brain fog
  • Delayed growth
  • Depression
  • Diarrhea
  • Discolored teeth
  • Fatigue
  • Infertility
  • Joint pain
  • Tingling
  • See more signs and symptoms

Almost all systems and parts of the body can be affected by celiac disease. As a result, it is a bit of a clinical chameleon that wears many disguises. Knowing when to undergo testing can be difficult largely because the symptoms often mimic those of other diseases, including irritable bowel syndrome (IBS), Crohn’s disease, intestinal infections, lactose intolerance, and depression. Simple blood tests are the first step in the diagnosis of celiac disease. A doctor will order one or more of a series of blood tests to measure the body’s response to gluten. If positive, an endoscopic biopsy will be performed.

Currently, the only treatment for celiac disease is a strict, lifelong gluten-free diet, which can be challenging, burdensome, and expensive. Even small amounts of gluten can cause damage to the small intestine, leading to digestive issues and nutrient deficiencies. Many patients report that the diet lessens their quality of life, making it difficult to travel, go to school, go out to eat or participate in everyday activities and celebrations. They also deal with judgment from those who think the diet is just a fad, instead of a necessary medical treatment.

Research into celiac disease is ongoing, and there is a need for real treatments and a cure. The mission of Beyond Celiac is to accelerate treatments and a cure for celiac disease because research, and our community, have determined that the gluten-free diet is not enough. There are several clinical trials underway to develop treatments for celiac disease. One way someone with celiac disease can help others in their community is to participate in a trial to help move the research forward.

Another way to get involved is to donate to celiac disease research and advocate for more funding and increased awareness and understanding of the disease among health care professionals and the general public. Greater awareness of celiac disease can help people get diagnosed and prevent further complications and improve quality of life.

Celiac Disease Resources

Living with celiac disease can be challenging, and it is essential to have a support system. Beyond Celiac is here to help. By working together and raising awareness and funds for research, we can help increase understanding of this disease and ultimately find a cure.

About Beyond Celiac

Since 2003, Beyond Celiac has been the leading patient advocacy and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac

Beyond Celiac is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.