There was a time when Amy Yoder Begley planned her runs around bathroom breaks.
The professional runner and Olympian’s problems started in high school. Begley suffered stomachaches at random times, without any apparent explanation. One especially brutal ache knocked her out of the Indiana state track meet, costing her a shot at the state championship.
Her issues persisted throughout college, where she suffered multiple stress fractures and developed hyperthyroidism, a condition where the thyroid releases too much of its hormones. She suffered muscle cramps, diarrhea, constipation, fatigue, skin rashes and joint pain. Doctors were unable to find a culprit.
“I would use the bathroom eight times a day,” Begley said. “My body was just always on my mind.”
It wasn’t until 2006, at age 28, that Begley was finally diagnosed with Celiac disease, in which patients have intolerance for gluten – a protein most commonly found in wheat, barley and rye. The condition causes damage to the small intestine and poor absorption of nutrients. The medical community has yet to agree on a singular cause of the disease, but families with a history of Type 1 diabetes and Down syndrome tend to be more susceptible.
Following the diagnosis, Begley removed gluten from her diet and immediately noticed an improvement.
“It made me more normal. It took away my anxiety,” Begley said. “I remembered that some of the best races I’d ever had were after low or gluten-free dinners.” She no longer felt perpetually tired and bloated. She was able to eat meals closer to race time, and best of all, no longer had to plan routes around easily accessible bathrooms.
Begley’s long road to diagnosis is a fairly typical story: The average time it takes for a symptomatic person to be diagnosed with Celiac disease in the U.S. is four years. According to the University of Chicago Celiac Disease Center, the number of Americans with Celiac disease would fill 936 cruise ships. Passengers on 908 of those ships would not even know they had it. If the problem is not diagnosed, someone afflicted with the disease could face any one of many health problems relating to poor absorption of nutrients, including malnutrition, osteoporosis and internal bleeding.
A 2009 study by the Mayo Clinic in Rochester, Minnesota, found that in the U.S., Celiac disease is four times more common now than it was in the 1950s. And like other food allergies and autism, the prevalence of Celiac disease and gluten-related health problems has soared over the last decade. But the medical community is uncertain why. Some believe Celiac disease is no more common, just better diagnosed. Others speculate it may be because of changes in the way wheat is grown and processed, or because of the increased prevalence of gluten in processed foods and medications.
Despite the growing number of cases, much confusion and uncertainty still surrounds gluten-related health problems.
The number of Americans with Celiac disease would fill 936 cruise ships. Passengers on 908 of those ships would not even know they had it.
- University of Chicago Celiac Disease Center
Celiac Disease vs. Gluten Sensitivity
The severity of Celiac disease cannot be measured on a spectrum -- you either have it or you don’t. The condition is defined as an auto-immune disorder in which gluten destroys the lining of the small intestine, rendering it incapable of absorbing nutrients and making patients more prone to anemia, infertility and bone disease -- which could help explain Begley’s collegiate stress fractures. But the more commonly discussed gluten disorder – as well as the one less clearly understood by the modern medical community -- is actually gluten sensitivity.
Gluten sensitivity provokes the same symptoms as Celiac disease, yet there is no formal procedure for diagnosing it. That is because unlike with Celiac, those who suffer from gluten sensitivity do not undergo any internal damage that can medically be traced to gluten. While doctors typically can diagnose Celiac with a blood test or an intestinal biopsy, there is no such test for gluten sensitivity.
“I accept that a patient may experience gluten-related symptoms without having Celiac, but I can’t give a scientific diagnosis,” says Colin Howden, a gastroenterologist at Northwestern Memorial Hospital in Chicago.
Glenn Osten Anderson can relate. At 24, his skin broke out, he suffered from severe indigestion and he started to lose weight. His family had a history of stomach problems, so he wasn’t entirely surprised. Many suggested that to treat the condition, he stick to a diet of mild foods.
“Everyone told me to eat plain toast, like it was some sort of penicillin,” Anderson says. “It only made things worse.”
By 2007, after four years of Anderson suffering through stomachaches and other illnesses, a doctor suggested he may have gluten sensitivity, and recommended he try going gluten-free. Anderson noticed an immediate improvement.
People with gluten sensitivity endure similar symptoms to those afflicted with Celiac – stomachaches, vomiting, chronic diarrhea -- but the severity of these symptoms can vary from person to person. And, unlike Celiac disease, no actual damage takes place in the small intestine.
Finally, if that weren’t confusing enough, there’s yet another condition that masquerades as its gluten-related cousins: wheat allergies. For those who suffer from wheat allergies, the body could have a reaction to any part of the wheat, not just the gluten protein.
Dropping Gluten To Cut Pounds
While the prevalence of Celiac disease and gluten sensitivity has more people eating gluten-free to simply function on a day-to-day basis, others have dropped wheat from their diet with a completely different goal in mind: weight loss.
Some health gurus and food advertisements tout the benefits of a gluten-free diet for those looking to drop extra pounds. Howden, however, says that any benefits are likely more correlation than medical causation. Gluten is not inherently bad, Howden says. It just happens to be present in calorie-dense foods like pizza, cupcakes and hamburger buns.
“Gluten has almost become a dirty word,” Howden says. “Some patients who claim gluten sensitivity may have just been eating a poor diet. They go gluten-free, eat more fish and fresh produce, and not surprisingly, they feel better.”
Begley agrees that for her, Celiac opened the door to a healthier lifestyle. Since her diagnosis, she’s focused on making most of her diet from non-processed options like fruits and vegetables. “Quinoa and sweet potatoes are my biggest go-to,” she says. “I could eat sweet potato fries all day.”
Anderson, on the other hand, bristles at those who voluntarily abstain from gluten.
“Anyone who chooses to live this lifestyle out of trendiness is an idiot,” he says. “I like wheat, pasta and pizza as much as the next guy -- I just can’t eat it.”
Whatever the motivation, it has become significantly easier to maintain a gluten-free lifestyle. Sans-gluten food options are popping up seemingly everywhere, and sales of gluten-free foods are expected to exceed more than $5 billion by 2015. Most grocery stores carry gluten-free products in the natural foods section, with a selection ranging from pasta to donuts.
Restaurants have also become more accommodating, with outlets such as Subway and The Melting Pot testing gluten-free options. P.F. Chang’s even requires their chefs to don fresh gloves and use specially labeled woks before cooking a gluten-free dish. But despite these advances, Begley still avoids the gluten-free menu at most restaurants. She notes that in her experience, such strict procedure is more exception than rule.
“Things are getting so much easier,” Begley says, “But I still worry about cross-contamination.”
If you’re having symptoms that you believe may be caused by gluten, Howden recommends seeing a gastroenterologist before you go gluten-free. That’s because it’s more difficult to test for Celiac disease once gluten has been expelled from the system. At that point, it’s unclear whether the patient is in remission or never actually had the disease.
Your best bet? Be candid with your doctor and take the necessary tests.
For more information on Celiac disease, check out the book "Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free," published by the American Gastroenterological Association Press.