article by Loretta Jay, NFCA Director of Program Development, featured in Social Work Today.
Social Work Today
Vol. 10 No. 2 P. 24
Know the basics about a hard-to-diagnose but easily treatable disease that manifests both physical and emotional symptoms.
Maria Palazzo* was 5 years old when she began experiencing dramatic mood swings. Her mother said they came out of nowhere without any identifiable precipitating event. “They made no sense to me,” her mother said. Maria had been an easy infant, but when she started eating, she got fussy. The fussiness progressed into a full-blown mood disorder before the cause was attributed to celiac disease.
Celiac disease is a common genetic autoimmune disorder that affects children and adults and may be diagnosed at any stage of life. People with celiac do not adequately digest gluten, the protein in wheat, barley, and rye. When gluten is consumed, the individual faces myriad symptoms due to malabsorption. The villi, the little hairlike protrusions that line one’s duodenum, become dull. They are no longer able to absorb the nutrients from food. As a result, any number of symptoms may occur, including those affecting mental health. The only treatment for celiac disease is to remove gluten from the diet.
Once thought to be quite rare, it is now known that celiac disease affects 1% of the U.S. population.
The medical community does not easily identify people with the disease, and it takes an average of 10 years for proper diagnosis. Physicians used to be taught that celiac disease was an orphan disease with only a few individuals affected by it. Current research shows that one of every 133 people has the disorder (Fasano et al, 2003), but only 5% of those affected know it, according to 2008 information from the National Institutes of Health. Challenging the diagnosis of celiac disease are the varied symptoms and a lack of medical awareness (Zipser, Farid, Baisch, Patel, & Patel, 2005).
To demonstrate how the disease’s presentation confounds diagnosis, one must only explore how the symptoms are described. Typical symptoms, including diarrhea, gas, and bloating, occur in less than one half of all newly diagnosed cases. Atypical symptoms occur in the majority of those newly identified cases (Rostami Nejad et al, 2009). These presentations include anemia, fatigue, osteoporosis, other gastrointestinal complaints, and even depression and anxiety. Many people with celiac disease are referred to a behavioral health professional. They may be experiencing emotional pain due to infertility or chronic fatigue syndrome. Or maybe their primary care provider couldn’t figure out what was wrong and suggested the cause was “in their head.” Considering celiac disease is critical to recognizing a person who has been misdiagnosed. Social workers can partner with other healthcare providers to accomplish this.
Teri Heines, MSW, LCSW, PsyD, who is based in Greenwood, CO, says when Maria was diagnosed with celiac and gluten was removed from her diet, her behavioral issues improved. Now 8 years old, Maria’s mood swings are attributed to her diet. The behavior changes Heines observed when celiac disease was recognized and treated inspired her to learn how to spot it in her clients and promote awareness of the disease among her colleagues.