Jan 29, 2015Against the Grain
Athletes who have celiac disease face a special challenge: fueling themselves for performance while avoiding all foods made with wheat. By understanding the condition and guiding them toward the best dietary options, you can help them thrive.
By Dr. James Leone
James Leone, PhD, ATC, CSCS,*D, CHES, is Assistant Professor of Health Education in the Department of Movement Arts, Health Promotion, and Leisure Studies at Bridgewater State College. He can be reached at: [email protected].
Deanne had always been a solid performer on her soccer team, valued by coaches and teammates for her skill, athleticism, and commitment. So when her performance during practices and games started to decline for no apparent reason, her coach pulled her aside to ask if anything was wrong.
“I just feel fatigued, achy, and sore,” she replied. “And lately I’ve had trouble keeping food down. I’m sure it will pass soon.”
But the symptoms didn’t pass, so the following week, Deanne talked to the team’s athletic trainer. He suspected a gastrointestinal virus, food poisoning, or maybe even mononucleosis, and made her an appointment with the team physician.
When asked about her food intake, Deanne said she was becoming “afraid to eat” because it made her feel terrible, with bloating, diarrhea, and stomach pain. She had lost several pounds in a matter of weeks. At first, the physician thought it was an eating disorder, but Deanne didn’t show the psychological signs–she wasn’t obsessing about food, and had a generally healthy sense of body image. However, she was growing distraught as her condition worsened and no one seemed to know what was causing it.
Deanne, her athletic trainer, and her team physician would soon find out that she suffered from celiac disease (CD), an illness that affects the body’s ability to digest and process food. Often undiagnosed or misdiagnosed, CD affects athletes of all ages, and can wreak havoc on athletic performance and overall health. But once identified, the condition can be managed successfully and doesn’t have to spell the end of an athletic career.
WHAT IS IT?
In a healthy digestive tract, food is broken down so that macronutrients (carbohydrates, protein, and fat) and micronutrients (vitamins and minerals) can be absorbed through the intestines and delivered throughout the body. But for those with CD, also known as celiac sprue, non-tropical sprue, or gluten-sensitive enteropathy, ingesting a protein called gluten irritates the intestine, causing an autoimmune response that’s similar to an allergic reaction.
When someone with CD is exposed to gluten, usually through food, it triggers a cascade of physiological events. As the gluten cells reach the stomach and eventually the small intestine, there is a marked increase in white blood cells (macrophages) and other inflammatory chemical mediators. Acute inflammation ensues, which leads to swelling and even bleeding, and the individual may experience bloating, gas, diarrhea, and localized pain.
Over time, this response to gluten exposure can lead to scarring and changes in the structure of the small intestine, especially the tiny finger-like projections in the intestinal wall called villi. Abnormal intestinal cells begin to develop and reduce the overall absorptive surface area for nutrients. This condition, called crypt hyperplasia, is a primary cause of nutrient malabsorption in people with CD.
Due to crypt hyperplasia, fewer nutrients are absorbed during digestion, so an individual must eat more food to meet their nutritional needs. But if the additional food contains gluten, the problem only grows worse, creating a vicious circle. If the condition is not identified and gluten isn’t eliminated from the diet, CD can cause long-term health problems, including ulcers, intestinal bleeding, lymphoma, adenocarcinoma (cancer) of the intestine, osteoporosis, and shorter stature in developing children (mainly due to malnutrition). In rare cases, people can even die from nutrient imbalances caused by CD that affect heart function.
Gluten is a very common protein found in countless food items, including virtually all foods containing wheat, many types of candy, and some condiments. It’s also sometimes present in non-food products, such as lipstick and the adhesive on envelopes. This is one reason why CD often goes undiagnosed–because so many things can trigger symptoms, narrowing down the cause is a difficult process. Once the disease is suspected, however, a physician can use tests to confirm the diagnosis fairly quickly.
Who gets CD and why? Many researchers agree there is a strong genetic component to the disease, as it often runs in families. People of Scandinavian and Northern European descent have especially high incidence, so international athletes from these areas may warrant extra concern, especially if they’re adjusting to an American diet for the first time.
For reasons not yet fully known, CD can remain dormant for years, during which time an individual displays no symptoms, before it suddenly manifests. Adding to the mystery, many CD patients report first noticing a change in digestive function after a surgery, major trauma, pregnancy, or period of severe emotional distress or sickness.
In the U.S., recent studies suggest that around one in 133 people likely have CD, which represents between two and three million cases nationwide. However, the condition is severely under-diagnosed–one estimate says that 97 percent of all CD sufferers in the country don’t know they have the disease, largely due to unfamiliarity with it among U.S. physicians.
Sufferers of severe CD are most likely to be diagnosed, and they usually learn to eliminate gluten from their diet. But those who are only moderately affected–with some intestinal inflammation, but perhaps not enough discomfort to seek treatment–may be compromising their health and athletic performance without knowing it. In fact, athletes may be less likely than other people to complain about mild CD symptoms, because they sometimes attribute intestinal distress to the demands of training for their sport.
But for athletes, CD can pose serious problems. The higher carbohydrate and protein demands of active people means that any drop in nutrient absorption can create serious deficiencies, limit muscle growth, and slow recovery. Compromised vitamin and mineral absorption also presents major trouble, since athletes rely on balanced micronutrient levels for everything from bone growth to blood clotting. That’s why it’s critical to be on the lookout for even minor symptoms.
When an athlete complains of persistent gastrointestinal distress, how can you tell if CD could be the cause? For reasons already described, arriving at a diagnosis can be tricky, but there are a few red flags which, if present, warrant referring the athlete to a physician for evaluation:
Weight loss. Of course, many gastrointestinal illnesses are accompanied by the loss of a few pounds. But with CD, the weight loss occurs even though the athlete is following normal eating patterns–unlike with stomach flu, for instance, which often results in loss of appetite and some degree of dehydration.
Skin reaction. An itchy skin rash called dermatitis herpetiformis is another distinct sign commonly found with CD. It typically presents in clusters of red bumps, sometimes with tiny water blisters. A burning sensation is usually felt locally before the bumps appear.
Unexplained anemia. If an athlete shows signs of anemia, or if it’s revealed by a blood test, and their diet doesn’t explain the cause, CD may be to blame. Iron is one of the key minerals that the body fails to absorb efficiently in CD sufferers.
Other common symptoms include gas, abdominal pain and bloating, chronic diarrhea, bone or joint pain, low bone density, behavioral changes, cramping, seizures, mouth sores, and the production of pale, fatty stools. Various combinations of these symptoms can indicate other illnesses as well, but CD should at least be part of the discussion with a physician when trying to pin down the cause of an athlete’s unexplained illness.
If CD is suspected, an important first step is to temporarily eliminate gluten from the athlete’s diet, a method commonly called a “gluten challenge.” If symptoms begin to resolve soon after, that’s a good indicator CD may be present. (For specifics on how to conduct this test, see “Gluten Challenge” below).
A blood test is often used for a firmer diagnosis, and the athlete will need to consume some gluten beforehand so the test reveals a reaction in the form of elevated antibody levels. If the initial blood test is positive, a physician may order another, more specific panel test–usually looking for levels of immunoglobulin A (IgA), anti-tissue transglutaminase (tTGA), and IgA anti-endomysium antibodies (AEA).
If dietary changes and blood testing suggest the presence of active CD, gastroenterologists consider a jejunal mucosal biopsy to be the “gold standard” of diagnosis. In this procedure, a sample of tissue is removed from the jejunum (a section of the small intestine) using a guided endoscope inserted orally. Lab testing evaluates the intestinal villi for inflammatory markers, scarring, and other damage–the telltale signs of CD.
COPING & THRIVING
If one of your athletes has been diagnosed with CD, it’s important to reassure them their athletic career isn’t over. While there is no cure for the disease, fueling the body for optimum performance is still possible if they take a careful approach to planning their diet.
One primary challenge for anyone with CD–and athletes especially–is getting enough carbohydrates on a daily basis while avoiding gluten. Some very popular complex carb sources, such as whole-grain breads and pastas, are rich in gluten and will cause an inflammatory response. Athletes may be tempted to “tough it out” because they feel the need to eat these foods, figuring they’ll mask the CD symptoms with over-the-counter drugs for indigestion, gas, or diarrhea. But this must be discouraged: The cumulative damage to the small intestine is serious, and in the long run they’ll be less able to absorb carbohydrates and other nutrients.
Adapting to a gluten-free diet (GFD) takes effort, but it is the best way to successfully manage the disease. Thankfully, labeling practices and heightened awareness to gluten sensitivity have made this task much easier in recent years. Also, several excellent resources are now available to help people with CD achieve a diverse, healthy diet while avoiding gluten. (See the “Resources” box below for some examples.)
Many traditional pastas, breads, cereals, and snack foods such as crackers are obviously off-limits to those on a GFD. However, there are now rice-based varieties of these foods that can provide quality carbs and closely simulate the texture and taste of the wheat-based versions. While more and more supermarkets are stocking these items, they’re still scarce in some areas, so the Internet is a great resource. Gluten-free versions of almost anything can now be found online with a little searching, and mail-order bulk purchasing of staple foods is a great way for athletes to stock up on healthy choices they can eat without worry.
Eating out during team meals and on road trips is another challenge, and this is one area where an athletic trainer’s assistance can be critical. Many restaurants have pre-planned menu adjustments for patrons with various dietary restrictions, so it’s important to call ahead and find out what gluten-free options will be available before a team books its meals, or what other special arrangements can be made.
A physician may recommend certain dietary supplements to address nutrient deficiencies in athletes with CD. People with the disease often have low levels of iron, potassium, calcium, and sodium, and many also experience electrolyte imbalances. Specific nutrients needed to repair tissue, including certain proteins and collagens, may be under-absorbed as well. Blood tests can reveal which substances require supplementation, and a registered dietitian or nutritionist can also help athletes find nutrient-rich foods that can meet their needs.
Not surprisingly, all these changes often carry a psychological impact. Losing a sense of personal food choice can be likened to any other grieving process. An athlete with CD may experience shock and denial after first being diagnosed, then anger at the prospect of having to change their diet and eliminate some foods. They may go through a “bargaining” phase, where they tell themselves they can occasionally cheat on the GFD–a slice of pizza here, a sandwich there, a couple of beers on the weekend–but they’ll end up feeling even worse when those lapses lead to physical distress.
Like athletes with diabetes, severe food allergies, or other medical conditions, they will need to accept that successfully managing CD means a lifestyle change and a more proactive, careful, educated approach to fueling the body. Beyond assisting with the nutritional changes, you can provide emotional support as an athlete adjusts, and if needed, also refer them to a counselor or other professional who can help them through any psychological issues associated with CD.
Members of the “support team” for an athlete with CD can include the athletic trainer, a dietitian, the team physician or another doctor, a counselor, coaches, and virtually anyone else in a position to help them manage the disease. It’s important for these people to communicate on a regular basis, to ensure that the athlete receives consistent reinforcement, any needed intervention and treatment, and access to all the education and assistance they can use.
The most important message to give athletes with CD is that they can continue to be successful in their sport and lead an active, normal, healthy life. The growth of gluten-free food options in recent years has been a giant leap forward in making CD easier to manage, and medical research continues to improve our understanding of the disease and its effects. Armed with the right knowledge, support, and resources, CD can be just another obstacle that athletes overcome on the road to optimal health and performance.
The following Web sites can educate athletes about celiac disease and help them develop strategies to manage it by adjusting their diet and lifestyle.
Celiac Disease Awareness Campaign www.celiac.nih.gov
American Celiac Society www.americanceliacsociety.org
Celiac Disease Foundation www.celiac.org
Celiac Disease and Gluten-Free Diet Information www.celiac.com
Celiac Sprue Association www.csaceliacs.org
Gluten Intolerance Group of North America www.gluten.net
National Foundation for Celiac Awareness www.celiaccentral.org
American Dietetic Association www.eatright.org
Sidebar: GLUTEN CHALLENGE
The gluten dietary challenge is a method of testing the body’s natural reaction to foods containing the protein gluten. This is often among the first steps recommended if an athlete’s gastrointestinal symptoms–such as gas, bloating, stomachaches, and diarrhea–suggest that they may have celiac disease (CD).
To conduct a gluten challenge, an athlete avoids all foods containing gluten for a set period, usually one to two weeks. Some food labels now provide a specific warning if the product contains or may contain gluten, but this is far from universal, so careful reading of ingredient labels is necessary. The athlete should also avoid contact with potential non-food gluten sources, such as envelope adhesive, lickable stamps, and lipstick.
During the challenge, the athlete should keep a detailed food journal of everything they ingest, in order to track which foods provoke or ameliorate symptoms. Even if CD isn’t the problem, this can help narrow down the real source. Close communication with a physician or gastroenterologist is also highly recommended during the challenge, since he or she can help interpret the results and determine as quickly as possible whether other tests should be performed.
If eliminating gluten causes the athlete’s condition to improve or makes their symptoms disappear entirely, that doesn’t guarantee they have CD. A logical next step is for a physician to order blood panel testing and/or a small intestine endoscopy to determine a diagnosis. If CD is in fact present, the physician will most likely recommend permanently eliminating gluten from the diet.
Sidebar: ON THE LABEL
Some food labels now include a specific warning if the product contains gluten, but most do not. Following a gluten-free diet (GFD) means checking ingredient lists for any substances that may trigger symptoms. If the label mentions any of the ingredients listed below, that product probably contains gluten. As a general rule, the more processed a food item is (often evidenced by a long ingredient list), the greater the odds it contains at least some gluten.
Abyssinian hard (wheat triticum durum) Amp-isostearoyl hydrolyzed wheat protein Barley grass Barley hordeum vulgare Barley malt Bleached flour Blue cheese (often made with bread) Bran Bread flour Brewers yeast Brown flour Bulgur/bulgur wheat Cereal binding Chilton Club wheat (triticum aestivum subspecies compactum) Common wheat (triticum aestivum) Couscous Dextrimaltose Disodium wheatgermamido peg-2 sulfosuccinate Durum wheat (triticum durum) Edible starch Einkorn (triticum monococcum) Emmer (triticum dicoccon) Farina Farina graham Filler Flour (normally this is wheat) Fu (dried wheat gluten) Germ Graham flour Granary flour Groats (barley, wheat) Hard wheat Hydrolyzed wheat gluten Hydrolyzed wheat protein (pg-propyl silanetriol) Hydrolyzed wheat starch Hydroxypropyltrimonium Kamut (pasta wheat) Malt Malt extract Malt syrup Malt flavoring Malt vinegar Macha wheat (triticum aestivum) Matzo semolina Mir Oriental wheat (triticum turanicum) Pasta Pearl barley Persian wheat (triticum carthlicum) Poulard wheat (triticum turgidum) Polish wheat (triticum polonicum) Rice malt (if barley or Koji are used) Rye Seitan Semolina Semolina triticum Shot wheat (triticum aestivum) Small spelt Soy sauce Spirits (some types) Spelt (triticum spelta) Sprouted wheat or barley Stearyldimoniumhydroxypropyl Strong flour Suet Tabbouleh Teriyaki sauce Textured vegetable protein/TVP Timopheevi wheat (triticum timopheevii) Triticale X triticosecale Triticum vulgare (wheat) flour lipids Triticum vulgare (wheat) germ extract Triticum vulgare (wheat) germ oil Udon (wheat noodles) Unbleached flour Vavilovi wheat (triticum aestivum) Vegetable starch Wheat amino acids Wheat bran extract Wheat durum triticum Wheat germ extract Wheat germ glycerides Wheat germ oil Wheat germamidopropyldimonium hydroxypropyl Wheat grass Wheat nuts Wheat protein Wheat triticum aestivum Wheat triticum monococcum Wheat (triticum vulgare) bran extract Whole-meal flour Wild einkorn (triticum boeotictim) Wild emmer (triticum dicoccoides)