Why does celiac disease seem to be more common these days?
The National Institutes of Health has made an effort to educate the medical community, and consumer groups are providing increased awareness. Food manufacturers are also marketing gluten-free foods. All of this has led to what appears like an explosion in diagnosis rates. Actually, the majority of these newly diagnosed people were already suffering from misdiagnosed conditions or for unknown reasons—they might have been diagnosed with irritable bowel syndrome or another condition, or they may not have been able to pinpoint what was going on, and now they finally have answers. Celiac disease is a common disorder, but was not considered by doctors as a possible cause for someone’s suffering until recently.
It still takes about 10 years, on average, for people to receive an accurate diagnosis for celiac disease. Why?
Symptoms of celiac disease can look like so many other problems—the flu, irritable bowel syndrome (IBS) or inflammatory bowel disease (IBD), anxiety, ADD/ADHD in children, forgetfulness, psychological disorders like depression, infertility of unknown causes, bone disease, chronic fatigue, just to name a few. People will seek help for years while they continue to get sicker. It’s not that the diagnosis is hard. What’s hard, I think, is for most doctors to understand that celiac disease is fairly common, and that you don’t have to be skinny or have chronic diarrhea to have it. It simply isn’t on most doctors’ radar screens yet, so it still takes an average of 10 years to get a diagnosis.
How do you know if it's not IBS or lactose intolerance?
There are tests for lactose intolerance that are easy to do. IBS is basically a ‘rule-out’ condition; it is the label given for chronic GI problems the doctor can’t find a cause for. Before a patient is labeled as having IBS, they should have been tested to rule out a number of other conditions, including celiac disease. The blood tests for celiac disease are very sensitive and specific so it is unlikely that you would ever get a false-positive result.
Some people have no symptoms, or not the usual gastrointestinal symptoms. What are the most common symptoms?
The most common symptoms seen for celiac disease are actually what are classified as atypical (or non-gut) presentations: anemia, bone disease, a skin rash called dermatitis herpetiformis (DH), migraines, failure to thrive in children and adults, difficulty learning and concentrating, or other associated autoimmune diseases, like type 1 diabetes, thyroid disease, lupus and rheumatoid arthritis. The most common symptoms of newly diagnosed people are anemia and early bone disease. Infertility, chronic fatigue or pain are other common symptoms.
When should you consider getting tested?
You should get tested if someone in your family has celiac disease, especially a first- or second-generation relative, such as a sister, cousin or uncle. Be sure to get tested if you have an associated autoimmune disease or GI problems of unknown origin. Blood tests are used as a screening tool. If they are positive, then a small intestinal biopsy is performed. If you have a skin rash, you might also have a skin biopsy to confirm whether you have DH.
Besides eating gluten-free, what else can I do to stay in nutritional balance?
Getting a well-balanced diet is important. When following a gluten-free diet, some people find they do not get adequate amounts of B-complex vitamins, fiber, calcium and sometimes iron. What’s more, some gluten-free foods are more concentrated in carbohydrates and have more calories than their wheat-containing counterparts. It’s important to be aware of this as we are seeing more people with celiac disease having issues with excess weight.
To keep calories down and nutrition up, try a naturally gluten-free diet. This is less costly and possibly healthier than using a lot of packaged gluten-free, highly refined desserts and bread products. Instead, rely on naturally gluten-free potatoes, brown rice, beans and legumes, corn and other starches. Get creative: use corn tortillas to make a sandwich, buy Asian rice noodles to make spaghetti or try a lettuce-wrapped hamburger. For a sweet treat, instead of cookies or cake try fresh fruit, pudding or a gelatin cup, or a small piece of chocolate.