Nutrition-wise blog

Celiac disease: Building awareness and support

By Jennifer K. Nelson, R.D., L.D. and Katherine Zeratsky, R.D., L.D. May 23, 2012

Approximately 1 in 133 Americans has celiac disease. Yet 95 percent of those with the disease are undiagnosed or misdiagnosed. Efforts are underway to increase public awareness about celiac disease, such as designating May as Celiac Awareness month.

Celiac disease damages the small intestine, causing pain and diarrhea, and interferes with absorption of nutrients. This leads to nutrition-related conditions including weight loss, and nutrient deficiencies that deprive your brain, nervous system, bones, liver and other organs of vital nourishment. There is no cure — the only treatment is avoiding gluten.

Joseph Murray, M.D., a Mayo Clinic gastroenterologist who specializes in diagnosis and treatment of celiac disease, has looked at incidence of the disease and mortality between the 1950s and now.

According to his study, published in the journal "Gastroenterology," the incidence of celiac disease is 4.5 times higher today. The study also found that individuals who weren't aware that they had celiac disease were nearly four times more likely than people without celiac disease to have died during the 45 years of follow-up.

Awareness is important for people with celiac disease and for their families. Awareness is also important for health care professionals. We must accurately diagnose and provide comprehensive education to prevent and manage the nutritional consequences this disease can wreak if gluten is not strictly avoided.

Awareness is critical for everyone involved in our food supply to recognize the need and to provide nutritious, gluten-free products. And regulatory assistance is needed from our government to ensure that labels are accurate and ingredients are truly gluten-free. Unfortunately people with celiac disease and their families have been waiting since 2007 for the Food and Drug Administration to finalize standards for gluten-free foods.

If you're reading this, consider yourself aware. However, awareness isn't enough.

Here are three simple steps you can take to fight celiac disease and support the gluten-free movement:

  • If you suspect you have celiac disease, do not start a gluten-free diet without your physician's approval. This can complicate the diagnosis. Spread the word about this too.
  • If you know someone with celiac disease, ask them about their challenges. Better yet — ask what you can do to help. Offer to cook a gluten-free meal.
  • Ask your local grocery store and favorite restaurants what gluten-free foods they have. Demand can increase supply.

What are you going to do?

- Jennifer

May 23, 2012