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Helping patients adhere to a gluten-free diet


You learn your preoperative patient is on a gluten-free diet. Would you wonder, “What is gluten?” or “Why would someone be on a gluten-free diet?”

Even if you already know the answers to these questions, you’d probably want to ask the patient, “Do you understand what a gluten-free diet entails?” and “Do you prepare your own meals at home, or does someone else prepare them for you?” Her answers can help you and other caregivers ensure she remains gluten-free in the hospital and receives proper discharge dietary instructions.

A gluten-free diet can be challenging, especially when patients are first diagnosed with a condition that requires it. Increasing your knowledge of gluten and a gluten-free diet allows you to give patients the education and emotional support they need to follow the diet.

What is gluten, exactly?

Many people associate gluten with wheat. Gluten is found in wheat products, but it’s also in other foods. Gluten is the protein in the grains of wheat, barley, and rye. These grains commonly are found in such processed foods as breads, cereals, doughnuts, pancakes, waffles, bagels, pizza, cakes, pies, and cookies. Other food items typically containing gluten include pasta, lunch meats, candy, processed sauces (including soy sauce, but not soy itself), broth, beer, food coatings and breading, and communion wafers. Certain nonfood items also may contain gluten. (See Nonfood items that may contain gluten below.)

Nonfood items that may contain gluten

Advise patients on gluten-free diets to avoid other items that may contain gluten, including:

  • lipsticks, lip balms, and lip glosses
  • other cosmetics
  • glues used on stamps and envelopes
  • Play-Doh

Teach them to read the labels on all products before using them. Caution parents to make sure children who must avoid gluten always wash their hands after using Play-Doh.

Reasons for a gluten-free diet

Celiac disease is the main reason for adopting a gluten-free diet. An autoimmune disorder, celiac disease occurs in about 1% of the U.S. population. In someone with this disease, gluten ingestion causes inflammation and damage to the lining of the small intestine, impairing nutrient absorption. Celiac disease commonly results in such GI symptoms as diarrhea, abdominal pain, and gas. Some people may experience weight loss or slowed growth; others are asymptomatic. A gluten-free diet is the only treatment for celiac disease.

A gluten-autism link?

Autism spectrum disorders (ASDs) are the fastest-growing diagnosed developmental disability. Affecting 1 in 150 children, these neurologic disorders impair social interaction and communication and may cause rigid routines and repetitive behaviors.

Speculation exists that ASDs alter absorption of gluten and casein (a milk protein), causing them to act like false opioids in the brain and affecting behavior and social interaction. An alternative theory holds that in some persons with an ASD, GI problems allow certain byproducts into the digestive system and subsequently cause ASD symptoms. Therefore, the thinking goes, a diet without gluten and casein may improve the overall progress of persons with ASDs.

Up to 40% of children with ASDs have followed a special diet at some time. However, studies don’t confirm the effectiveness of dietary interventions. The literature contains informal and anecdotal reports of speech improvement and increases in socially appropriate behavior of children with ASDs on special diets. Because a gluten- and casein-free diet causes relatively few side effects, many families put their children with ASDs on these diets. But more research is needed to determine the effectiveness.

Teaching patients about avoiding gluten

Patients newly diagnosed with a condition that warrants a gluten-free diet need information and teaching to eliminate all gluten exposure. Consult a dietitian to provide specific teaching materials and dietary guidelines.

Encourage patients to keep a food diary to list all foods, beverages, and medications they consume and all food reactions that occur. This can help determine if dietary changes are needed. Once they’ve established a gluten-free diet, they can begin to expand their dietary choices. Recommend they develop a way to evaluate new or questionable foods—for instance, by introducing one new food at a time. Advise them to carefully check food labels for glutens or visit manufacturers’ websites to review product ingredient lists.

Allowable foods

Persons on a gluten-free diet can eat gluten-free grains and starches, such as corn, potato starch, polenta, quinoa, rice, soy, tapioca, buckwheat, arrowroot, and flax. Teach them to look for these ingredients on food labels, or consult the dietary department for guidance. In hospitalized patients, a dietitian can guide food selections.

Persons on a gluten-free diet also can eat plain chicken, eggs, beef, poultry, pork, and fish—as long as these foods aren’t prepared with sauces or special coatings. Also, they can eat plain fresh or frozen fruits and vegetables.

Generally, dairy products, including milk, yogurt, and natural cheeses, are allowed. (However, patients diagnosed with severe malabsorption may need to follow a lactose-free diet temporarily.) Also permitted are corn tacos and tortillas, nuts, seeds, corn chips, popcorn, rice cakes, beans, and legumes, unless these have been pro­cessed with gluten-containing foods.

Many beverages, including wine, coffee, tea, and soft drinks, are gluten free. But advise patients to use caution with alcoholic beverages—particularly beer, ale, lager, and some distilled beverages, which contain gluten.

Foods to avoid

Instruct patients to avoid processed foods, foods with malt flavoring or modified food starch, cheese spreads, processed cheese, processed sauces, coating mixes, imitation seafood, roux, soups and soup bases, stuffing, thickeners, matzo products, pudding mixes, beverage mixes, salad dressings, and marinades. Inform patients that some processed rice and potatoes are frozen and packaged with starches, so they should check food labels carefully.

Oats generally are gluten free but may cause symptoms in some people. Therefore, the recommendation is to eliminate oats from the diet initially. Several studies have shown oats are safe for patients with celiac disease—but some oat products are processed in facilities that also process wheat products, potentially causing cross-contamination. Experts advise patients to avoid oats except when processed in a dedicated gluten-free facility. Once the patient’s diet is established, oats can be reintroduced.

Discharge instructions

Before discharge, emphasize the importance of reading all food labels. Since January 2006, food product labels must identify the eight most prevalent food allergens—eggs, fish, milk, peanuts, shellfish, soybeans, tree nuts, and wheat. Manufacturers must declare wheat or a wheat derivative on labels. Unfortunately, barley, rye, or oats—foods that can be problematic to those on gluten-free diets—aren’t required to be identified on labels.

Other precautions

Inform patients that cooking and baking from scratch is the best way to avoid added gluten. Encourage them to look for gluten-free products in the specialty sections of grocery stores or health food stores.

Caution patients that prescription and over-the-counter medications may contain gluten. Advise them to check medication labels for starches, dextrins, pregelatinized starch, and sodium starch glycolate; these items may contain gluten sources. Inform patents that the website provides a list of added drug ingredients and tells whether they contain gluten. Alternatively, suggest patients check with a pharmacist or the drug manufacturer to determine if their medications contain gluten.

Tell patients contamination can occur if gluten-free products come in contact with gluten-containing items. For example, salad ingredients can become contaminated if they’re cut on boards used for gluten-containing products. Kitchen counters, toasters, knives, serving spoons, and deep fryers also are potential sources of contamination.

Instruct patients to avoid sharing condiments with people who eat gluten-containing products. Encourage them to use separate utensils, appliances, work spaces, and condiment containers at home.

Eating out

Patients who must avoid gluten may express concerns about eating out. Tell them that while it’s still possible, it takes some planning. Advise them to call ahead and ask if the restaurant has gluten-free items. Inform them that many restaurants (especially national chain restaurants) make nutritional information available on their websites. Suggest they dine early or during slow periods to help ensure they get the full attention of kitchen and wait staff, and increase the chance of a gluten-free meal.

A diet less daunting

Starting a gluten-free diet can be overwhelming, but having available resources helps. Many websites offer advice on gluten-free diets; support groups can provide additional help. (See Web resources on gluten-free diets by clicking on the PDF icon above.) Also, many books on gluten-free cooking and eating are available. (See Gluten-free reading list by clicking on the PDF icon above.) Although a gluten-free diet requires many dietary and lifestyle changes, patients who follow the suggestions in this article can still eat a delicious diet without feeling deprived.

Selected references

Alpert M. The autism diet: can avoiding bread and milk ease the disorder? Sci Am. 2007;296(4):19-20.

Autism speaks. Accessed July 20, 2010.

Case S. Gluten-Free Diet: A Comprehensive Resource Guide. 4th ed. Regina, SK Canada: Case Nutrition Consulting, Inc.; 2010.

Children’s Digestive Health and Nutrition Foundation. Accessed July 11, 2010.

Gluten-free drugs. Accessed July 11, 2010.

National Digestive Diseases Information Clearinghouse. Accessed July 20, 2010.

Patterson M. An overview of celiac disease in adults. Am J Nurse Pract. 2010;14(5):8-12, 16-17.

Westerberg DP, Gill JM, Dave B, DiPrinzio MJ, Quisel A, Foy A. New strategies for diagnosis and management of celiac disease. JAOA.2006;106(3):145-151. Accessed July 20, 2010.

Zarkadas M, Case S. Celiac disease and the gluten-free diet: an overview. Top Clin Nutr. 2005;20(2):127-138.

Teresa Shellenbarger is a professor at Indiana University of Pennsylvania in Indiana, Pennsylvania. Pamela DeGeorge is a senior staff nurse at Children’s Hospital of Pittsburgh of UPMC in Pittsburgh, Pennsylvania.

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