Learn how dietary and behavioral changes can spell relief for people with celiac disease.
Celiac disease (CD) is an inherited autoimmune disorder characterized by chronic inflammation of the small intestinal mucosa. The condition is four times more common today than it was 50 years ago (Rubio-Tapia et al. 2009). The condition affects 1 out of every 105 adults in the United States (Fasano et al. 2003) and appears in children as well.
Unfortunately, CD is greatly underdiagnosed and often misdiagnosed: according to the National Foundation for Celiac Awareness, only 5% of people with the condition are accurately diagnosed by a physician, whereas the remaining 95% of sufferers are incorrectly diagnosed or never diagnosed at all (NFCA 2009).
The condition is usually diagnosed later in life, and by adulthood it can have serious health implications. With CD on the rise, it’s important for health and fitness professionals to have a basic understanding of the condition. This article will explain the disease and its symptoms and explore the only effective treatment to date: adopting and maintaining a gluten-free diet for life.
Individuals with CD are intolerant of gluten, a general term used to describe the different proteins found in wheat, rye, barley and, to a lesser extent, oats. In these people, the immune system response triggered from even a small amount of ingested gluten causes damage to the small intestine, which can lead to nutrient malabsorption, potential organ dysfunction and the development of serious health problems.
The surface of the small intestine is lined with villi, tiny, fingerlike projections that absorb nutrients from food. When a person with CD ingests gluten, it prompts an immune-mediated inflammatory reaction, primarily in the small intestine, damaging the villi. Because damaged villi don’t effectively absorb essential nutrients, nutritional deficiencies can result. Left untreated, CD can lead to atrophy of the villi and malnutrition, affecting several body systems and increasing a person’s risk for a number of life-threatening health conditions, such as neurological disorders, early onset osteopenia and osteoporosis, and intestinal cancers.
Health outcomes depend on the duration of exposure to gluten before diagnosis and the initiation of a gluten-free diet. A recent study showed that individuals with undiagnosed CD were nearly four times more likely to have died over a 45-year period than subjects without the disease (Rubio-Tapia et al. 2009). Other recognized complications of undiagnosed or untreated CD include infertility in both males and females, increased risk of miscarriage and lymphoma (Green & Cellier 2007).
Symptoms are many and can vary among adults and children. Some individuals may be asymptomatic (i.e., have no apparent symptoms), yet still have small-intestinal damage; this condition is referred to as silent celiac disease. The fact that more health professionals are recognizing that patients may be asymptomatic or have symptoms that mimic other conditions may contribute to the increased prevalence of CD cases.
The most commonly observed gastrointestinal (GI) symptoms include recurring diarrhea, constipation, bloating, abdominal cramping, nausea and unexplained weight loss. Because CD involves multiple organ systems, the more frequent presentation is a range of non-GI symptoms, such as anemia, chronic fatigue, bone or joint pain and behavioral changes; infants and children may also suffer from delayed growth. Many adults develop a painfully itchy rash or lesions. Generally, children are more likely to have digestive problems, whereas adults usually present with nonintestinal symptoms.
Shelley Case, RD, is a consulting dietitian, speaker and author of Gluten-Free Diet: A Comprehensive Resource Guide, based in Regina, Saskatchewan. “Half of patients don’t experience GI symptoms and present with problems like bone or joint pain, canker sores, migraines and anemia, the most common symptom of undiagnosed celiac disease,” says Case.
Because CD symptoms can be subtle or even absent and are not always gastrointestinal in nature, many patients are incorrectly diagnosed when seeking medical care. According to the National Institutes of Health, the most common misdiagnoses are iron-deficiency anemia, osteoporosis and peripheral neuropathy (NIH 2004). Adults typically experience symptoms for 10–11 years before being correctly diagnosed with CD (Green et al. 2001).
CD symptoms mimic those of other conditions, which often leads to a misdiagnosis of irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia or food allergy or sensitivity. Although gluten is the environmental trigger to CD, once active in the body the condition can be precipitated by a viral infection, pregnancy, surgery or chronic stress (NIH 2004).
CD is correctly diagnosed by a positive antibody blood test, which is then followed by a small-bowel tissue biopsy that confirms damage and inflammation. However, a negative antibody screening test or biopsy doesn’t necessarily rule out CD, for several reasons: (1) the result may be a false negative; (2) the result can be negative early in the disease; and (3) the individual may be deficient in the antibody being tested. That’s why Case recommends that clients request a second screening test and/or a biopsy to rule out the disease, especially if there is a family history of CD.
That said, individuals who suspect they have CD should not immediately start on a gluten-free diet prior to seeing a physician, because this can result in a negative screening test and/or biopsy.
Currently, the only effective treatment for CD is lifelong adherence to a gluten-free diet, meaning steering clear of products made with wheat (e.g., durum, faro, graham, kumut, semolina and spelt), rye, barley and some oats. Owing to cross-contamination with other grains, commercial oat products contain varying levels of gluten. But oatmeal lovers with CD can rest easy: research confirms that pure, uncontaminated oats (like Bob’s Red Mill brand) are safe if consumed at low levels (1/2 to 3/4 cup dry for adults and 1/4 cup a day for children). However, oats should be introduced gradually and under medical supervision (Janatuinen et al. 2002; Srinivasan et al. 2006).
Strict adherence to a gluten-free diet can be challenging because of the amount of gluten-containing food in the typical American diet. Adding to the difficulty are all the hidden sources of gluten in many food products, supplements and medications. “It’s more than avoiding breads, pastas and cereals,” says Case. “Gluten is used in a lot of foods, such as salad dressings, marinades and some chocolate bars.” (See the sidebar “Hidden Sources of Gluten” for a longer list.)
Living gluten free requires diligent reading of food and supplement ingredient labels every time a product is purchased, since manufacturers frequently change ingredients. Additionally, it is critical that clients practice food safety to avoid cross-contamination of foods at home and in restaurants. Fortunately, many restaurants now offer a gluten-free menu, but it is still important to inquire about ingredients and cooking methods because of hidden sources.
Anyone thinking of implementing a balanced gluten-free diet should first consult a registered dietitian (RD), who will be able, not only to offer guidelines on safe foods, but also to address potential nutrient deficiencies and their associated conditions. Clients should be warned against seeking advice from the Internet or from friends or family.
The good news is that a gluten-free diet can be nutritionally adequate with some planning. “Many whole, unprocessed foods found along the perimeter of the grocery store are naturally gluten free, like plain fruits, vegetables, beans and nuts, dairy and lean protein sources,” says Case. Focusing on these whole foods is imperative to ensure that CD sufferers consume sufficient amounts of fiber, iron and folate-rich foods.
Getting the right amount of vitamins and minerals is also important. “I typically recommend a multivitamin-mineral supplement and, in some cases, a separate calcium plus vitamin D supplement,” says Case. Because many people with newly diagnosed CD are lactose intolerant as well, they tend to eliminate dairy products, putting them at increased risk for calcium and vitamin D deficiency.
It’s not easy being gluten free. “Many individuals with celiac disease often gain weight after going on the diet, because a lot of gluten-free foods are higher in starch, sugars and fat and often lower in fiber than their gluten-containing counterparts,” explains Case. “So making wise food choices—plus a regular fitness regimen—is important.”
A gluten-free diet can sometimes lead to nutritional deficiencies in levels of iron, folate, niacin, zinc, vitamin B12, calcium, phosphorus and fiber (Hallert et al. 2002; Thompson 2000). That’s because most foods without gluten are made with refined grains and are not fortified with iron and B vitamins like their gluten- containing counterparts.
According to Case, there are three major challenges to adopting and maintaining a gluten-free diet:
- finding gluten-free foods in places where people typically shop
- dealing with the high cost of gluten-free foods
- coping with the lack of palatability of some gluten-free foods
Case says that while the quality of foods without gluten has improved with the recent introduction of new products, the foods continue to be expensive and are not easily found outside of major cities. By some estimates, gluten-free products cost two to three times more than their counterparts (Stevens & Rashind 2008; Lee et al. 2007).
“The shift from specialty gluten-free companies to more mainstream [companies] should improve availability and drive down the cost of these specialty foods,” says Case. By way of example, she cites a slate of new products, including General Mills’ gluten-free Rice Chex cereal, Betty Crocker’s gluten-free cake mixes and even a gluten-free beer from Anheuser-Busch.
But does eliminating gluten require eating only processed, gluten-free foods for the rest of one’s life? Case says no. More economical ways are to eat the gluten-free whole or less processed foods that are recommended to the general public. “But,” says Case, “it is nice to have the option to enjoy a slice of gluten-free cake for a birthday celebration. It can be quite challenging to always eat gluten free, especially at social events, when eating out and traveling. You can’t be as spontaneous,” says Case.
Adopting and adhering to a gluten-free diet can be a challenge, but in the long run it is worth the effort. Once gluten is completely eliminated from the diet, the small intestine and villi will slowly start to heal, symptoms will subside or disappear, and overall health and quality of life will improve. If permanent damage didn’t occur before diagnosis, the risk of future complications is reduced, and individuals can expect to live a healthy life adhering to a gluten-free diet. n