May is Celiac Awareness Month. Celiac disease is a serious genetic autoimmune disorder that affects about one percent of the population. People with celiac disease develop symptoms after ingestion of gluten, which is a protein found in certain grains, particularly wheat, barley, and rye. It is the only autoimmune disorder where the trigger for the disease is known.

While many people think of celiac disease as a gastrointestinal disorder, celiac disease can affect many parts of the body and can present in a variety of ways. Children typically will have classic gastrointestinal reactions, which can include abdominal pain, vomiting, diarrhea, and bloating, along with failure to thrive (poor growth) related to malnutrition. Adults often present with atypical symptoms that can include iron deficiency anemia, osteoporosis, elevated liver enzymes, recurrent miscarriages, dental enamel defects, or neuropsychiatric symptoms. The neuropsychiatric symptoms are common and can include balance problems, difficulty concentrating (brain fog), anxiety, and depression. Up to 20 percent of adults with celiac disease will have dermatitis herpetiformis, a skin condition with small, itchy, red bumps on the elbows, knees, buttocks, or lower back.

Not everyone who has a reaction to gluten has celiac disease. Some people have nonceliac gluten sensitivity (NCGS). They will often have similar intestinal reactions to eating gluten containing foods, and they may also have similar neurologic and psychiatric reactions, but it is not based on an autoimmune reaction the way it is in people with celiac disease. Also, some of the other manifestations of celiac disease, such as dermatitis herpetiformis, do not occur in people with NCGS. Celiac disease can be diagnosed in part by blood tests that detect the antibodies triggered by gluten proteins. There are no blood tests that can help diagnose NCGS.

For patients with celiac disease, the biggest concerns often center on the effects on social functioning.

After getting diagnosed with celiac disease, the only treatment is a strict gluten-free diet. This can be difficult, as gluten is present in so many foods. While bread, cakes, and pasta are obvious sources of gluten, even foods such as soy sauce contain gluten. For this reason, it is advised that when someone is newly diagnosed with celiac disease, they should be referred to a dietician knowledgeable about the condition. At the present time, there are no medications that are approved for the treatment of celiac disease. Some patients have refractory disease, meaning the persistence or recurrence of symptoms despite excellent adherence to gluten-free diet for at least 12 months, confirmed by abnormalities seen with intestinal biopsy. For these patients, oral corticosteroids may be used to alleviate symptoms. If that is not effective, other immunosuppressant medications are sometimes tried.

For patients with celiac disease, the biggest concerns often center on the effects on social functioning. Depending on the severity of the reactions, some people are afraid to eat outside of their own home. Celiac disease can be especially challenging for children. Something as simple as going to a birthday party, where pizza may be the main course and birthday cake the dessert, can make children with celiac feel awkward and left out because they cannot eat what everyone else is eating.

There is hope however. There are a number of drugs for treating celiac disease in various stages of clinical trials. Patients interested in participating in clinical trials can talk with their doctors or can find out about them on patient advocacy websites, such as Beyond Celiac.

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