Sufferers of celiac disease know all too well the common symptoms of severe nausea, diarrhea, gas, bloating and fatigue that accompany the illness. They also know that adopting — and sticking to — a gluten-free diet will bring long-term relief. But sometimes, doctors will prescribe drugs off label, such as corticosteroids (prednisone and other forms) and infliximab (Remicade), to combat the symptoms. The side effects for both drugs are significant.
Corticosteroids work by blocking the effects of a number of chemicals the immune system uses to “kick-start” the process of inflammation. The side effects of prednisone include insomnia, mood changes, increased appetite, slow wound healing, acne and dizziness. Prednisone can also cause nausea, stomach pain and bloating — some of the same symptoms of celiac disease. (For more on the drug, see the “Long-Term Effects of Corticosteroids.”)
Remicade reduces pain and inflammation, particularly in those with autoimmune diseases. However, the long-term use of Remicade may increase the risk of developing certain types of cancer, including a rare but fast-growing type of lymphoma that can be fatal. The risk is higher in teens and young adults using Remicade and in those with existing autoimmune disorders.
Why Is Gluten a Problem?
Celiac disease is a hereditary digestive and autoimmune disorder that affects as many as 3 million people in the US, according to the American Gastroenterological Association. When celiac sufferers eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. “In everyone there is a tiny bit of gluten that remains undigested in the body after we consume it — the GI tract can’t process it all,” says Alessio Fasano, MD, chief of the division of pediatric gastroenterology and nutrition and director of the Center for Celiac Research at Massachusetts General Hospital. “In celiac sufferers, that tiny bit of gluten causes a severe immune response [as the body] tries to get rid of it. This activates chemicals called cytokines, which cause the GI symptoms,” he adds.
In severe cases, the immune reaction can trigger inflammation elsewhere in the body. This makes celiac sufferers predisposed to conditions like joint pain and skin rashes as well as miscarriages, infertility, Type 1 diabetes and even some immune-linked illnesses such as lymphoma and intestinal cancers.
Eating Gluten-Free Is (Mostly) Easy
Celiac disease is diagnosed with a blood test or intestinal biopsy; once it’s confirmed, the most straightforward treatment is to adopt a diet entirely devoid of gluten. “Gluten is used extensively in the food industry because it’s cheap. It’s a preservative and a filler, but it’s not necessary for nutrition,” says Dr. Fasano. The good news for celiac sufferers is that a gluten-free diet is also one that is best for your health. It relies heavily on fruits, veggies, legumes, and healthy proteins, such as lean meat, nuts and beans. It eliminates refined carbs like breads, pastas and cereals as well as packaged and processed foods that are not labeled “gluten free” by the FDA. (For a list of foods to avoid, see these recommendations from the American Dietetic Association.)
Though celiac sufferers must adhere to a strict gluten-free diet, more food options are available today than ever before. (For example, the Girl Scouts just came out with 2 new gluten-free cookies.) Kelly Crummy, age 44, was diagnosed with celiac disease nearly 20 years ago. She changed her diet and has been symptom-free for 19 years. “When I was first diagnosed with celiac disease, I had to order all my products by mail,” she says. “It was hit or miss — there just wasn’t a lot of good stuff out there. Now there are delicious foods everywhere. I go to my local pizza place, and they have a fabulous gluten-free pizza. Most of the time, I really don’t feel deprived. I really don’t look at my diet as a hardship.” As a result of eliminating gluten, Crummy’s episodes of severe stomach pain, diarrhea and bleeding are long gone.
People with celiac disease should also be aware of reading prescription and OTC drug labels, says Dr. Fasano. Many drug companies use gluten as a filler in drugs, so check the outside package or drug package inserts carefully to see that your drug is gluten-free. Inactive drug ingredients (fillers) are not required to be listed in full. Therefore, the Celiac Disease Foundation (CDF) suggests making your pharmacist aware that you are avoiding gluten. The CDF also recommends a website maintained by Steven Plogsted, PharmD, of Nationwide Children’s Hospital, in Columbus, Ohio, that provides information on gluten-free drugs. The site is for informational purposes and neither the CDF or MedShadow Foundation endorse it.
In addition, newly diagnosed sufferers are typically deficient in some key nutrients before they eliminate gluten from their diets. (If the small intestine has been damaged by celiac disease, the body may not fully absorb certain nutrients.) Your best bet? Have your doctor run a test of all your nutrient levels — especially iron, folate, B12 and zinc — as these deficiencies are the most common. You can then discuss which supplements you might need to take and how to derive the most nutrients from your diet.
Good News Ahead?
Finally, a recent study published in the Journal of Gastroenterology may signal good news for people with celiac disease. Researchers have found evidence that the protein elafin — used as a targeted drug — may be able to eliminate gluten on its way through the digestive tract and strengthen the intestinal lining, thus preventing an immune response in celiac sufferers. (Elafin is a protein that occurs naturally in the body.) More research is needed, but researchers say that the next step in celiac research is to find targeted drug therapies that help sufferers properly digest gluten.