Think you may be affected by celiac disease? Read on to learn more about the causes, symptoms, diagnosis and treatment.
Judging by the radiant face of Marra St. Clair, you’d never guess that she has been anything but 100 percent healthy. But a decade ago, the co-founder of Ritual Wellness was losing weight rapidly, experiencing stomach distension and pain, constantly getting sick, and feeling so fatigued that she needed abundant caffeine just to get through the day. Medical testing determined that she had celiac disease—and she’s not alone.
An estimated three million Americans (about one percent of the population) have this genetically based autoimmune disorder, 85 percent of whom have yet to be diagnosed, says Rachel Begun, MS, RD, a registered dietitian and spokesperson for the Academy of Nutrition and Dietetics with an expertise in celiac disease and gluten-related disorders. For those who have the disease, eating gluten causes the immune system to trigger an attack on the intestinal lining. “The intestines become inflamed and the villi (sites on the intestinal lining that absorb nutrients into the blood) become damaged,” Begun explains. “Long-term exposure to gluten often leads to nutrition deficiencies and their potential long-term effects, such as infertility and osteoporosis.”
The short-term effects aren’t exactly good news either. Symptoms vary from one person to another, but can range from gastrointestinal issues (gas, bloating, cramping, diarrhea and constipation) to extra-intestinal issues such as joint pain, fatigue, unexplained weight loss or gain, nutritional deficiencies, irritability and depression, among others. In young children, the disease can even cause delayed growth and failure to thrive.
Not everyone with celiac disease experiences symptoms, which helps to explain the low diagnosis rate. “However, antibodies to gluten are being produced and damage to the intestines is still happening, so it’s just as important for these people to follow a 100 percent gluten-free diet,” stresses Begun. Among those who do have symptoms, a portion may instead be experiencing gluten sensitivity, which causes a different immune response. Some of the symptoms may be similar, but antibodies to gluten and intestinal damage don’t occur with gluten sensitivity. “There is also research to suggest that people with gluten sensitivity tend to experience more extra-intestinal symptoms, such as fatigue, joint pain, and ‘foggy brain,’” says Begun.
Celiac disease is genetically based, although environmental factors that remain unclear play a role in triggering it and are considered at least partially responsible for a four-fold increase in prevalence of the disease over the past four decades. Forty percent of the United States population has one of two celiac disease genes, Begun explains, but only one percent of the population actually gets the disease; many people with the genes aren’t affected at all. If you don’t carry either of the two genes, you’re in the clear.
A genetic test can determine your disease risk, but it doesn’t confirm a diagnosis. That requires additional testing, including a blood panel test and, if the result is positive, a biopsy of the small intestine to determine if the intestinal lining has been damaged. If it has, celiac disease is the culprit. (To ensure accurate results, it’s best to eat gluten regularly for an extended amount of time as opposed to switching to a gluten-free diet prior to testing.) Some people test negative for the disease, yet experience symptoms while eating gluten. This is diagnosed as gluten sensitivity, and symptoms subside when a gluten-free diet is followed.
Begun recommends that anyone diagnosed or presenting with the following conditions be screened for celiac disease, whether or not they are experiencing symptoms: iron-deficiency anemia, osteoporosis, infertility, depression, irritable bowel syndrome and other autoimmune disorders, such as Type 1 Diabetes and thyroid conditions.
At present, following a strict gluten-free diet is the only treatment for celiac disease. Symptoms typically improve dramatically within a few weeks of cutting out gluten, as St. Clair experienced. Soon after going gluten-free, she felt better and began putting weight back on. “My digestion didn’t return to normal until I repaired my insides through a juice cleanse, followed by supplementing with probiotics and digestive enzymes,” she says.
St. Clair also relies on Ritual Juices as a healthy snack to tide her over until the next meal, since so many bars and other snack foods contain gluten. These are 100 percent organic, fresh-pressed, raw juices for everyday nutrition. Her other go-to snacks include fruit, nuts and soy paper (used like a tortilla) filled with hummus, cucumbers and peppers. She recommends steering clear of processed foods, including gluten-free varieties, which are growing in popularity as companies capitalize on awareness of the disease and of gluten sensitivity. “To set the record straight, gluten-free does not automatically equal healthy!” says St. Clair.
The Gluten Free RD, Rachel Begun’s blog, offers research updates, recipes and more.
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