Living with celiac disease

Tracy Nichols had no idea she had the gene for celiac disease until last year. That’s when, at age 30, severe symptoms drove her to see her doctor. Although Nichols woke up feeling fine every morning, by the afternoon she had “horrible bloating” and by nighttime she couldn’t stand up straight. “I was familiar with celiac disease because my grandma had it for 30 years,” says Nichols, “But I didn’t have the same symptoms, so I didn’t think I had it.” The variability in symptoms is what makes celiac disease so difficult to diagnose. On average, people with the disease suffer nine years before they receive an accurate diagnosis. Luckily, Nichols mentioned her family history to her doctor. “My doctor ordered blood tests for celiac disease. My numbers were off the charts.” Because blood tests may yield false positive results, it’s standard procedure to perform an intestinal biopsy to confirm the diagnosis. “The biopsy showed the lining of my small intestine was severely damaged. I had celiac disease for sure.”

Nichols, who lives in Mason, was referred to a registered dietitian at Ingham Regional Medical Center where she learned what product ingredients, foods and beverages are safe to eat and drink. She also joined a local celiac support group. “At first, I didn’t think I needed a support group,” says Nichols, “But when I started the special diet, it was a big adjustment—it was overwhelming. There’s so much information about celiac disease on the Internet: Some is great and helpful, but not all is factual. The support group is a valuable source of accurate information and advice such as where to find quality products and good recipes.” Nichols symptoms improved quickly and over time, her body has healed, but she must follow a special diet for the rest of her life. “Nine out of ten people who have celiac disease don’t know it. If you think you have it, get the tests done to find out. Managing celiac disease properly is important because, if you don’t, it can cause other health problems and diseases.”

What is celiac disease?
Celiac disease is an autoimmune disorder in which the villi (the finger-like projections lining the small intestines) are damaged by gluten, a protein found in wheat, rye and barley. Symptoms are highly variable and can occur at any age. One or more of these symptoms may be present in varying degrees of severity: diarrhea, constipation (or both), anemia, nausea, reflux, bloating, gas, lactose intolerance, weight loss, mouth ulcers, extreme fatigue, bone and joint pain, easy bruising, menstrual irregularities, miscarriage, infertility, migraines, depression, ataxia, seizures, neuropathy, elevated liver enzymes, and dermatitis herpetiformis (DH), a skin condition. Those who have DH have celiac disease.

What causes celiac disease?

Celiac disease is a common, yet under-diagnosed, inherited disorder. It’s estimated to affect as many as 1 in 100 Americans. Celiac disease may be triggered by a viral or gastrointestinal infection, pregnancy, severe stress or surgery. In those who are genetically susceptible, consuming gluten triggers an autoimmune response which damages the villi lining the small intestine, causing malabsorption of nutrients. Untreated celiac disease can result in nutrient deficiencies, osteoporosis, increased risk of intestinal cancers, reproductive complications and other autoimmune disorders.

How is celiac disease diagnosed?

Specific blood tests are used for the initial diagnosis, but results must be confirmed by a biopsy of the small intestine. For accurate results, usual eating habits must be continued: Consuming a gluten-free diet will skew the test results.

How is celiac disease managed?

The only treatment for celiac disease is a strict gluten-free diet for life. Referral to a registered dietitian with expertise in celiac disease is crucial for assessment, education and follow up. Joining a local and/or national celiac group for ongoing support is also recommended.

“No matter where you go, food is a part of your life,” says Nichols. “Gluten is in things you would never imagine like modified food starch, malt vinegar, canned chicken and Gatorade. I have to read every single label. I never know if gluten is in the food that’s served at friends’ houses, potlucks or weddings, so I had to get used to preparing my own food and eating at home beforehand. I also take my own food everywhere I go.”

Gluten-Free Diet Information and Resources:
Michigan Capital Celiac/DH Group:
Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones
Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case
The Gluten-Free Gourmet Bakes Bread by Bette Hagman

Karen Giles-Smith, MS, RD, is a registered dietitian and freelance writer based in Mason, Michigan. Visit her Web site and blog at

Leave a Reply