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The Gluten-free Journey

The Gluten-free Journey Whether clients follow the diet because of celiac disease or the less understood gluten sensitivity, RDs serve as a guide for patients on a lifelong quest to relieve symptoms and improve health.

The Gluten-free Journey
After months of gastrointestinal discom­fort, abdominal pain, and bloating followed by weeks of medical testing, Susan finally learned she has celiac disease
. Frightened, confused, and overwhelmed about the next steps in her new restricted dietary lifestyle, she turned to an RD her physician recommended. The RD faces the challenge of calming her new patient, educating Susan about the celiac disease diagnosis, and walking with her along a journey fraught with misinformation and confusion.
Celiac Disease vs. Gluten Sensitivity
It’s not surprising that many patients newly diagnosed with celiac disease become overwhelmed at the thought of modi­fying their lifestyle, including what they can and cannot eat in restaurants and at parties. Fortunately, Susan and others with celiac disease aren’t alone in their journey. According to Rachel Begun, MS, RD, CDN, a food and nutrition consultant and spokesperson for the Academy of Nutrition and Dietetics (the Academy), approximately 1% of the population has celiac dis­ease, and about 90% of them are undiagnosed or misdiagnosed.
“A bigger portion of the population experiences gluten sen­sitivity to varying degrees. Estimates are that as much as 6% of the population, or 20 million Americans, may be gluten sensi­tive,” Begun says.
Celiac disease is an autoimmune disorder in which the body triggers an attack on the intestines every time gluten is eaten, Begun says. Inflammation and damage occur in the small intes­tine and nutrients can’t be absorbed, leading to nutrition defi­ciencies and a wide range of symptoms.
Begun says many people with the disease are asymptomatic and thus don’t experience any negative symptoms after eating gluten. “They are, however, experiencing the same damage to the intestines as those who do experience symptoms,” she cautions.
According to the National Foundation for Celiac Awareness, non-celiac gluten sensitivity is found in “individuals who cannot tolerate gluten and experience symptoms similar to those with celiac disease but yet who lack the same antibodies and intes­tinal damage as seen in celiac disease. Early research sug­gests that non-celiac gluten sensitivity is an innate immune response, as opposed to an adaptive immune response (such as autoimmune) or allergic reaction.”
“We don’t know much about gluten sensitivity just yet, but we do know that it’s a unique condition from celiac disease and involves an immune response,” Begun says. “While symptoms of gluten sensitivity can be similar to those of celiac disease, people with gluten sensitivity don’t produce antibodies to gluten or show signs of damage to the intestine.”
Dietary Treatment
Laura Jeffers, MEd, RD, LD, says patients usually are eager to embrace the gluten-free (GF) lifestyle once they realize how it will benefit them: symptom relief, more energy, better health status, and an improved quality of life. Jeffers, outpatient man­ager for nutrition therapy at the Digestive Disease Institute at the Cleveland Clinic, teaches patients the importance of adopt­ing the changes involved in living GF for the long haul.
“I stress the importance of GF for life,” Jeffers says. “No small bites every now and then and no ‘mostly GF.’ I also explain that wheat free is not gluten free and that reading labels must become a habit. While there’s no cure for [celiac disease], the GF diet can relieve symptoms of the disease, and patients can feel healthy and full of energy while on the diet. The mucosal damage is a result of a genetic predisposition in combination with environmental factors and inflammation that ‘s immune based.” Therefore it’s important for dietitians to clarify with their patients that even the tiniest amount of gluten may cause intestinal damage even if there are no overt symptoms.
“Some patients are in a state of shock when they find out they have a type of condition that’s not going to go away,” says Lenore Wespetal, MS, RD, CDE, a certified diabetes educator at Shawano Medical Center in Wisconsin.
Most of Begun’s patients feel overwhelmed with the dietary changes that are part of a GF diet. “In particular, parents of [young] celiac disease patients can feel overwhelmed knowing they’re responsible for ensuring their kids avoid gluten. While some are relieved knowing they finally have found the answer to their health issues, others are in denial about having to change their diet,” Begun says. “There’s also the emotional part that comes with the social aspects of eating. People are worried they won’t be able to enjoy eating out which, for many, is an important part of socializing with friends and family. In the end, though, most are happy to be feeling better and doing the right thing for their long-term health.”
To Eat or Not to Eat
The key types of “common” foods that are safe for patients with celiac disease include naturally GF items such as fruits, vegetables, meats, nuts, legumes, fish, poultry, eggs, and most dairy (eg, cheese, yogurt, cottage cheese). GF grains include rice and corn. Some less familiar GF options include flaxseeds, nut and bean flours, potato starch, quinoa, rice bran, teff, wild rice, tapioca, buckwheat, arrowroot, millet, amaranth, chia seeds, mesquite, montina, sago, and sorghum. Oats also are consid­ered GF but only if they’re labeled as such.
Begun stresses RDs need to help their patients with celiac disease focus their diet on naturally GF foods rather than GF packaged alternatives. “It’s even more important to get this message across with newly diagnosed patients because their bodies have been devoid of nutrients and need to heal,” she says. “Nutrient-dense foods remedy nutrition deficiencies and help the body to heal faster.”
It’s also important to meet patients where they are in terms of current lifestyle and dietary patterns. “If a patient has no cook­ing skills and is traveling for business five days a week, then it’s a good idea to focus first on how to handle themselves in a res­taurant,” Begun says. “For the mother who’s making most of the child’s meals and snacks at home, then you want to teach them how to make smart choices at the grocery store as well as intro­duce them to common ingredients used in gluten-free cooking and baking.”
Avoiding cross-contamination when following a GF diet is of utmost importance. “It’s very important to discuss cross-contamination with newly diagnosed patients,” Jeffers says. “It’s important for patients to understand how easily foods can become contaminated with gluten. If a gluten bun on a sandwich is removed and replaced with the GF bread, it’s too late. Or if there are croutons on the salad and [they’re] picked off, the salad shouldn’t be eaten since it was already contaminated.”
Additionally, gluten can be spread from containers of food, such as peanut butter and jelly, when a knife that has touched gluten-containing bread is dipped into the jar. It’s also important to use separate toasters and related small appliances as well as cutting boards and dishes when handling both GF and non-GF foods. If this isn’t possible, the item must be thoroughly cleaned to remove any traces of gluten to avoid cross-contamination.
“Be sure to tell patients to read the food labels of their favor­ite foods every six months, as ingredients can change at any time and some products that didn’t contain gluten in the past may contain it now,” Jeffers says.
Helping People Adapt
Mary K. Sharrett, MS, RD, LD, CNSD, a clinical dietitian in nutritional support services at Nationwide Children’s Hospital in Columbus, Ohio, suggests RDs schedule two 45-minute to one-hour sessions with clients newly diagnosed with celiac disease because they’ll have numerous questions, as there’s much to learn about following a GF diet.
“If you don’t know the answer, don’t try to guess. Tell them you’ll get back to them and then find an expert to help you,” says Sharrett, who’s also a member of the Academy’s celiac disease expert workgroup for the Evidence-Based Analysis Library and the founder and dietitian advisor for the Gluten-Free Gang, a celiac disease support group. “The Academy’s Medical Nutrition Practice Group has a subunit called Dietitians in Gluten Intoler­ance Disease with lots of experts.”
Sharrett also recommends RDs provide a few naturally GF recipes to help clients start their journey. Moreover, RDs should determine some of their client’s favorite meals and provide sug­gestions for making them GF. For instance, if a client enjoys tacos, suggesting a GF brand of taco seasoning is a good fix.
“For patients having difficulty adhering to the diet, encourage them to get involved with a support group, online or in person,”
Jeffers says. “Also, let patients know there are many great online sources of gluten-free products, and some compa­nies will send samples.”
Wespetal says it’s also important to determine what research the patient already has done regarding celiac dis­ease and a GF diet. “This will help clarify any misconceptions the patient may have about what celiac disease is and what their role is in managing it,” she says. “Also, RDs should explain how to review ingredient lists on food packages. Is it clear to them that ‘wheat free’ does not mean ‘gluten free’? Finally, use follow-up visits to assess the nutritional adequacy of the patient’s typical eating pattern, especially fiber and B vitamins.”
“Your patients become very informed and may teach you something along the way,” Jeffers says. “There’s nothing wrong with learning from your patients especially since they’re living it on a daily basis.”
Eating Out
For many people with celiac disease, eating at restaurants or attending par­ties especially may cause frustration and fear. “To increase the likelihood of getting a safe meal, call the restaurant ahead of time to let them know about your gluten-free needs,” Begun says. “Right from the beginning you’ll know if the restaurant isn’t knowledgeable about serving people with dietary restric­tions. If you get that gut feeling that they don’t know what you’re talking about, it’s a red flag to make reservations some­where else. I also recommend review­ing the restaurant’s menu ahead of time so you can narrow down your choices and have a more focused conversation with the server. This is easier for the server, which makes it more likely you’ll get a gluten-free meal.”
When counseling patients about eating out or attending parties, Jeffers suggests giving them the following tips:
Before going to a restaurant, try to view the menu online and identify pos­sible GF items in advance.
Let the server know that you can’t eat gluten, which includes avoiding wheat, rye, barley, and derivatives of those sources.
Salads should never have croutons, and confirm that salad ingredients are GF before consumption.
Always ask before ordering. Flour often is used to thicken soups, and meats may contain fillers made of gluten.
Avoid anything described as being encrusted, breaded, marinated, or served in an unknown broth.
Fried foods must be fried in separate oil to be considered GF.
Consider bringing your own GF bread or crackers.
Consider eating out at an ethnic res­taurant, as many of the foods may be from GF sources (eg, rice, corn).
At parties, if possible, clients with celiac disease should speak with the host to make him or her aware of their need to avoid gluten, preferably with enough advance notice so the host can adjust the menu accordingly. Begun suggests offer­ing to make one or two dishes if the party is more intimate, as this ensures “safe” items for the client to eat and takes pres­sure off the host. The following are some additional tips:
Don’t attend the party hungry, as there may be few GF items from which to choose.
Bring your own GF bread or crackers or a GF item to share.
Never assume something is GF. Con­firm that it’s safe before eating it.
Fresh fruits, vegetables, dairy items, and fish are safe options as long as they didn’t come in contact with any products containing gluten.
Silver Lining
Though following a GF diet may seem daunting at first, clients with celiac dis­ease or gluten sensitivity, with the help of knowledgeable RDs, easily can navi­gate their way through daily living as well as special events without worrying that gluten will cross their lips and potentially cause problems once again.
— Maura Keller is a Minneapolis-based freelance writer and editor.