Celiac Disease-What Parents and Caregivers Should Know

By Woodward, Alicia | The Exceptional Parent, May 2011 | Go to article overview

Celiac Disease-What Parents and Caregivers Should Know


Woodward, Alicia, The Exceptional Parent


By Alicia Woodward, LCSW, Editor-in-Chief, Living Without Magazine

Katherine Davis, * 19, came to my office complaining of low-level depression and heightened anxiety. She worried all the time, she said, and always felt jittery. This anxiety kept her from going out with friends or speaking up in class. A vegetarian whose primary foods, besides salad, were bread, cereal, pasta and yogurt, Katherine confided that she had a "touchy" stomach and suffered frequent bouts of diarrhea, along with chronic gas and bloating. As I asked about her family history, Katherine mentioned that an aunt had similar digestive issues and a cousin had gluten sensitivity. At the end of our session, I gave Katherine an important homework assignment: Get tested for celiac disease.

Celiac disease is a genetic autoimmune disorder characterized by a heightened sensitivity to gluten, the protein in wheat, barley and rye. The disease is more common than most people think, affecting approximately 3 million in the United States, about 1 in 100. One of the most notable things about celiac disease is that up to 97 percent of Americans who have it remain undiagnosed.

Awareness of the disease in the United States is increasing but it can still take years--an average of nine, according to Peter H.R. Green, MD, director of the Celiac Disease Center at Columbia University--to be diagnosed. This may be due to the fact that celiac disease can present with a wide range of subtle to serious symptoms that can vary from person to person. These symptoms include the classic gastrointestinal discomforts commonly associated with the disease--abdominal pain (gas, cramps, bloating), diarrhea or constipation (or both), reflux, unexplained weight loss. In young children, two other well-known symptoms are failure to thrive and abdominal distention. In older children, common symptoms are short stature, anemia and delayed puberty.

But symptoms can also include those not so commonly associated with the disease, such as migraines, seizures, tingling and numbness in the hands or feet, an itchy skin rash, canker sores, clumsiness, "foggy thinking," dementia, fatigue, unexplained weight gain or, as reported by Kathryn Davis, anxiety and depression.

To make diagnosis even more challenging, many patients have no symptoms at all. This phenomenon is known as "the celiac iceberg," in that there are large numbers of celiacs who are completely asymptomatic. These people have either "silent" or "latent" forms of the disease. The key difference is that silent celiacs have obvious intestinal damage (discovered by biopsy of the small intestine via endoscopy) while latent celiacs do not. Both show positive results of the disease in blood-screening tests.

The only treatment for celiac disease is the strict, life-long adherence to a gluten-free diet. If left untreated, the disease damages the lining of the small intestine, affecting and limiting nutrient absorption. Over time, the condition causes malnourishment and all the accompanying symptoms. That's one reason why celiac disease is linked to conditions like iron-deficiency anemia, osteopenia, osteoporosis, vitamin K deficiency and infertility, as well as other autoimmune disorders like type 1 diabetes and rheumatoid arthritis.

GLUTEN AND THE BRAIN

It makes sense to me to view celiac disease--and the broader, as yet ill-defined condition known as "gluten sensitivity"--as having three different presentations that may or may not occur together. That's (1) celiac disease in the traditional sense with gut damage to the small bowel; (2) skin problems--an itchy rash called dermatitis herpetiformis, or DH; and (3) brain-related issues--neurologic and psychological problems. All three are treated with the gluten-free diet.

Of these three, the brain-related aspects of the disease are the least well known by the general public and the medical community. Doctors often look for the obvious gastrointestinal distress and dismiss neurologic and emotional symptoms, which can lead to delayed diagnosis and unnecessary suffering. …

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