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Unexpected diagnosis brings new awareness of celiac disease

During May of 2020 – in the midst of all the stress surrounding the COVID-19 pandemic – I wouldn’t have given a second thought to the fact that it was Celiac Disease Awareness Month. This year, that has definitely changed.

Last October, my 24-year-old daughter was diagnosed with celiac disease seemingly out of the blue, with no previous symptoms. After a frightening episode when she became very dizzy and almost passed out at work, she was found to have severe anemia; an astute doctor soon ordered antibody tests for celiac, which came back unquestionably positive.  

Lisa Russell and daughter
Lisa Russell with her daughter (Family photo)

It turns out she is actually one of the lucky ones. In the United States, an estimated 3 million people have celiac disease, but at least 80% of them don’t know it. 

Celiac disease is a genetically based condition that causes an autoimmune reaction to eating gluten, a protein found in grains such as wheat, rye and barley. Over time, it can severely damage the lining of the small intestine and impair the absorption of nutrients from food. There is no cure for the disease, and no medication is available to treat it; but by permanently following a strict gluten-free diet, people can usually (but not always) manage its symptoms.

Those potential symptoms number more than 200, according to the Celiac Disease Foundation, which can affect virtually all systems of the body. Among the most common are abdominal pain, cramping and diarrhea, fatigue, weight loss, joint pain, neuropathy, and others. My daughter has experienced several of these since being diagnosed, along with headaches, “brain fog,” rashes and anxiety.

However, celiac disease can often be completely silent, damaging the small intestine without producing symptoms for years or even decades before it is discovered – often by accident – in conjunction with another illness. If undetected, it can eventually lead to serious health issues including infertility, osteoporosis, liver damage, nervous system disorders and even some cancers.

Once one family member has been diagnosed with celiac disease, the others should be tested as well, experts say. In fact, a Mayo Clinic study conducted in 2019 found that 44% of the parents, siblings and children of a group of celiac patients it screened also had the disease. Nearly all of them had no symptoms at all or had experienced symptoms that were not considered “classic.” 

The May annual awareness event aims to alert more Americans to the prevalence and possibility of celiac disease. For better or worse, my family is now among them.

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