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‘No One Ever Put the Puzzle Pieces Together’: A Nurse’s Guide to Celiac Disease

October 5, 2012

By Sylvia Foley, AJN senior editor

Wheat spikes by Dag Endresen, via Flickr

If you’ve thought that celiac disease is just another disease-of-the-moment that few people actually have, this month’s CE by McCabe and colleagues, “Celiac Disease: A Medical Puzzle,” might make you reconsider. The disease is an autoimmune genetic illness that typically targets the small intestine, and it’s caused by an intolerance to ingested gluten, a complex protein found in wheat and certain other grains. Until recently, celiac disease was considered rare; but widespread serologic testing has indicated otherwise. Experts estimate that up to 1% of the U.S. population—more than 3.1 million people—are affected.

Yet celiac disease remains widely underrecognized. For one thing, clinicians are still being taught that it’s a childhood illness, although onset can occur at any age; for another, disease presentation is highly variable (there are more than 200 associated signs and symptoms). All of the article’s six authors have themselves “either personally endured or witnessed the misery of misdiagnosis.” To help raise awareness, they offer several illustrative stories, including this one:

I am a registered nurse. I was treated for irritable bowel syndrome for more than 10 years. Although I was very careful with my diet, I never seemed to get better and felt sick most of the time. One day, I was admitting an elderly woman to home care and was reviewing her many diagnoses. She told me about her celiac disease and the symptoms she’d experienced. As she went down the long list, I put down my pen and looked at her. “I have the same symptoms,” I said.

The article provides a brief overview of celiac disease, outlines its pathophysiology and the four disease types, and discusses signs and symptoms. As the authors point out, “Diagnosis is all the more challenging because a significant proportion of patients may present with nongastrointestinal symptoms or have no symptoms at all.” Among the numerous non-GI signs and symptoms associated with celiac disease are the following:

  • anemia
  • arthralgia
  • ataxia
  • behavioral disturbances
  • dental enamel hypoplasia
  • dermatitis herpetiformis
  • migraines
  • night blindness
  • peripheral neuropathy

McCabe and colleagues also address disease management and patient education. The only known treatment for celiac disease is strict adherence to a gluten-free diet, which can be challenging, since gluten is widely used as an additive. Nursing implications include teaching patients how to read food, vitamin, and supplement labels and helping them find psychological support. To learn more, read the article—it’s free online. And if you’ve cared for patients with celiac disease, we’d love to hear about your experiences.

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