Celiac disease is the most underdiagnosed autoimmune condition in the US. This gastrointestinal disorder affects one in every 100 Americans-yet only about 3% of those afflicted get properly diagnosed and treated. It takes 11 years, on average, from the time symptoms appear until the diagnosis is made. In the interim, as the disease progresses, patients grow increasingly at risk for complications that can harm their bones, blood and nervous system...or even lead to cancer.

Women are twice as likely as men to have celiac disease. Contrary to what many doctors believe, it can develop at any time, even among seniors.

New finding: Celiac disease is now four times as common as it was 50 years ago, tests of old blood samples show.

Confounding Symptoms

When a person who has celiac disease consumes gluten-a protein in wheat, rye, barley and triticale (a wheat-rye hybrid)-her immune system attacks the protein. This inflames and damages the intestinal lining and interferes with absorption of nutrients. The person may develop…

  • Classic, overt symptoms. Typically, celiac disease causes severe chronic or recurrent diarrhea. Poor nutrient absorption leads to weight loss, smelly stools, gassiness and/or weakness. Many doctors, mistaking these symptoms for irritable bowel syndrome or inflammatory bowel disease, advise eating more high-fiber grains which only makes patients sicker.
  • Silent symptoms. When there is no diarrhea, it's called silent celiac disease. In some silent cases, there are no symptoms at all. In others, atypical symptoms-abdominal pain, migraines, numbness or pain in hands and feet—lead to various wrong diagnoses. Silent celiac disease nonetheless continues to cause intestinal damage.
  • Skin symptoms. Dermatitis herpetiformis (DH) is a chronic itchy, blistery rash. Only people with celiac disease get DH-but the vast majority of DH patients do not develop intestinal symptoms. Consequently, they often are misdiagnosed with eczema, psoriasis or "nerves."

Untreated, celiac disease creates an ever-increasing risk of developing very serious complications, such as osteoporosis, anemia, infertility, neurological problems (poor balance, seizures, dementia) and/or various cancers (melanoma, lymphoma). A missed diagnosis also represents a missed opportunity to watch for other autoimmune disorders that often go hand-in-hand with celiac disease, including thyroid disease, rheumatoid arthritis and alopecia areata (patchy hair loss).

Getting Diagnosed At Last

Celiac disease is genetic-you cannot get it by eating too much gluten. The genes can "express" themselves at any point in life, and the disease is never outgrown.

Vital: Get tested if you experience any of the following…

  • Possible celiac symptoms.
  • A family history of the disease. Almost 10% of family members of celiac patients also have it, even if they have no symptoms.
  • Type 1 diabetes. Genetic factors link this autoimmune disorder to an increased risk for celiac disease.
  • Down syndrome. Again, there appears to be a genetic link.

Celiac disease usually can be diagnosed with blood tests for certain antibodies. A biopsy of tissue from the small intestine then is needed to confirm the diagnosis. If a patient has skin symptoms, a skin biopsy that confirms the DH rash also confirms the celiac diagnosis.

Sometimes nutritionists or naturopaths will recommend that patients adopt the gluten-free diet used to control celiac disease—but without first confirming the diagnosis with a blood test or biopsy.

Problem: Starting a gluten-free diet before you complete the diagnostic tests will yield a false-negative result. If you do not actually have celiac disease, you subject yourself to needless limitations...you incur the extra cost of buying gluten-free foods.. and your diet may lack adequate fiber.

The Diet Solution

Currently there are no drugs or supplements available to treat celiac disease. However, following a strict gluten-free diet can work wonders at alleviating celiac symptoms.

Important: If tests confirm celiac disease, the diet is essential even if you have no symptoms—otherwise, intestinal damage continues.

The diet can be tricky because gluten is in all foods that contain wheat, rye, barley and triticale. What's more, gluten grains have many aliases.

Example: Bulgur, couscous, dinkle, durum, einkorn, emmer, fu, graham, kamut, matzah, mir, seitan, semolina and spelt all are wheat products. Avoid oats, too-these often get tainted from being processed in proximity to gluten grains-unless labeled "gluten-free."

Unexpected: Gluten may be found in processed luncheon meat, imitation seafood, canned soup, frozen entrées, soy sauce, beer, medications, supplements and lipsticks.

Adhering to a gluten-free diet is easier than it used to be because all products with wheat now must be labeled as such. Though products containing gluten-grain-derived ingredients are not all necessarily labeled that way, requirements for allowing a food to be labeled gluten-free have become stricter. Now, gluten-free breads, cereals, pastas and other foods are sold in supermarkets and health food stores. Do be sure to get enough fiber from gluten-free grains and other sources

After adopting a gluten-free diet, some patients see radical improvement within weeks... for others, it takes months or longer. If improvement is slow, your gastroenterologist should investigate possible underlying conditions (such as infection or hormonal problems that can exacerbate celiac symptoms.

Information: Contact the American Celiac Disease Alliance (703-622-3331, www.american celiac.org)...Celiac Disease Foundation (818-9902354, www.celiac.org)...Celiac Sprue Association USA (877-272-4272, www.csaceliacs.org)

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