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Celiac disease--what parents and caregivers should know.

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.


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.

"Patients and their doctors should know that certain chronic neurological disorders are due to celiac disease," said Stefano Guandalini, MD, the medical director of the University of Chicago Celiac Disease Center, in an interview with Living Without magazine. "Some syndromes, like epilepsy with calcification in the brain, are definitely linked to celiac disease. If you look at other neurological disorders--epilepsy without a known cause, ataxia (unstable gait, clumsiness), peripheral neuropathy (tingling or numbness in the hands or feet), or even recurrent headaches--you'll find a higher than expected percentage of these patients have celiac disease."

When the focus of celiac activity is in the brain, a patient can develop problems with walking, speaking and swallowing. This is because the gluten reaction, called gluten ataxia, targets the cerebellum, the center that controls coordination and complex movements. Often, the peripheral nerves located outside the spinal cord are also involved, leading to chronic and progressive neuropathy, a disease affecting the nervous system that results in feelings of numbness, tingling or pain. Other neurologic symptoms are slurred speech, loss of coordination in upper and lower limbs, difficultly with normal walking, vision problems, chronic headaches. In children and young adults, you may see developmental delay, diminished muscle tone, learning disorders and ADHD symptoms.

Celiac disease can even present as autistic-like behavior. "Autism and celiac disease are distinct, unrelated entities but some autistic-like behaviors, especially in young children, are associated with celiac disease. An undiagnosed child may, in fact, appear sad, introverted, unwilling to socialize or communicate even with his or her parents or the child may be cranky and excessively irritable," said Guandalini.

In addition, brain-related symptoms of celiac disease can be psychiatric in nature. "It's well documented in medical literature. Hallucinations, depression, anxiety, suicide ideation--they're all associated with celiac disease," Guandalini said. "Fortunately, these symptoms, including depression, anxiety and hallucinations, promptly regress on a gluten-free diet."


The incidence of celiac disease is higher in groups of people who have certain medical conditions. For example, 8 to 10 percent of patients with type 1 diabetes have celiac disease.

Over 10 percent of individuals with Down syndrome also have celiac disease. The disease often remains undiagnosed in this vulnerable population as those with Down can have trouble verbalizing what can be vague symptoms. Caregivers are encouraged to look for subtle signs of discomfort or periods of "being off" in terms of behavior, attitude or reduced energy levels. Periodic testing is recommended for those with Down syndrome.

Others at higher risk for celiac disease include people with the following conditions:

* First-degree relatives with biopsyproven celiac disease

* Addison's disease

* Graves' disease

* Hashimoto's thyroiditis

* Selective IgA Deficiency

* Sjogren's disease

* Turner's syndrome

* Unexplained infertility or recurrent miscarriage

* Williams syndrome

The most common screening test for celiac disease is the anti-tissue transglutaminase (tTG-IgA). Anyone with IgA deficiency (a blood condition that can skew screening results) should undergo a total serum IgA test. Other blood tests for celiac include the anti-endomysial antibody (EMA-IgA) and the new deamidated gliadin peptide (DGP).

Even with a negative test result, experts suggest that these populations be re-tested at regular intervals. A positive result indicates that a person needs a biopsy; it is not a diagnosis. The diagnostic gold standard is endoscopic biopsy of the small intestine, which confirms damaged villi.

Celiac medical experts strongly recommend that people be screened for celiac disease before embarking on the gluten-free diet. The reason for this is that test results are not accurate unless the patient has been eating a regular (gluten-containing) diet for a period before being tested.

There's a genetic test available that looks for two celiac markers: HLA-DQ2 and HLA-DQ8. A positive finding does not indicate a celiac diagnosis but a negative result can help rule out the disease. Note that eating gluten (or not) before this test does not affect test results.


And what about Katherine Davis, my anxious patient with the "touchy" stomach? Katherine and I addressed her anxiety and depression with cognitive-behavior therapy. But this treatment didn't ease her symptoms like the change she ultimately made to her diet. After a blood screening showed heightened antibodies to gluten, Katherine underwent an intestinal biopsy and received a celiac diagnosis. Within days of going gluten free, her stomach problems disappeared, her depression lifted and her anxiety faded to manageable levels. She is going out with friends, volunteering regularly in class--and is no longer my patient.

* Not her real name.

Alicia Woodward, LCSW, is editor-in-chief of Living Without magazine (, the nation's leading publication for people with celiac disease, gluten sensitivity and food allergies. A licensed psychotherapist, Alicia specializes in the psychological, spiritual and social aspects of living with chronic medical conditions, including celiac disease and food allergies and sensitivities.
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Title Annotation:Celiac Disease Awareness Month!
Author:Woodward, Alicia
Publication:The Exceptional Parent
Geographic Code:1USA
Date:May 1, 2011
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