May is Celiac Disease Awareness Month
If you have ever dined out with someone who asks a lot of questions about the ingredients on the menu, there’s a good chance they are one of the 3 million American living with celiac disease.
More than just a food allergy or sensitivity, celiac disease is an inherited autoimmune disorder you can develop at any time in life in which the ingestion of gluten triggers the body's immune system to attack the small intestine. This response damages the lining of the intestine, leading to malabsorption of nutrients. Over time, the damage can cause gastrointestinal issues, along with the possibility of neurological problems, stunted growth in children, issues with infertility, reduced bone density, some cancers, and more.
Because they vary widely among individuals, recognizing celiac disease symptoms can be tricky. In fact, an estimated 83% of people with the disease are undiagnosed.
Of the more than 300 known symptoms that can occur in the digestive system or other parts of the body, these are some of the most common:
- Digestive issues such as diarrhea, bloating, gas, or constipation
- Fatigue and weakness
- Iron-deficiency anemia
- Weight loss
- Skin rashes or itchy skin
- Canker sores
- Brain fog
- Delayed growth and puberty
- Fractures or thin bones
- Joint pain
- Nerve damage
- Depression or anxiety
- Irritability and behavioral issues
- Headaches
- Dental enamel defects
Diagnosing celiac disease begins with a simple blood test and, if the test is positive, an upper endoscopy to confirm the diagnosis.
For people with celiac disease, managing the condition is all about adhering to a strict gluten-free diet. This means avoiding all foods and products containing wheat, barley, and rye. This requires carefully reading food labels and, yes, asking a LOT of questions when dining away from home.
Gluten by another name
Food products regulated by the FDA that contain an ingredient derived from wheat must have “wheat” clearly indicated on the label, either in a “Contains” statement, or in parentheses right after the ingredient from which it is derived. However, non-FDA regulated foods may use other terms to refer to gluten. Here are a few ways gluten could be named in an ingredients list:
► Triticum vulgare – Latin for wheat
► Hordeum vulgare extract – Latin for barley
► Secale cereal – Latin for rye
► Avena sativa – Latin for oats
However, it's not just about avoiding gluten in food. People with celiac disease must also be careful about cross-contamination, especially when dining out or sharing kitchen space with gluten-eating family members or roommates. Separate cooking utensils, toasters, and cutting boards can help prevent accidental gluten exposure.
For the newly diagnosed, living with celiac disease may feel overwhelming. But with the right knowledge and support, it's entirely manageable. Whether you have celiac disease yourself or know someone who does, you can find help and resources—including meal plans, tips for navigating dining out, restaurant directories, safe shopping lists, support groups and more—from the following organizations:
Beyond Celiac
Celiac Disease Foundation
Gluten Intolerance Group
National Celiac Association
Think you may have celiac disease?
Once you hit the “submit” button, you’ll be emailed your results, which you can share with your doctor and ask about getting tested.
David Furman, MD, is a gastroenterologist at Southwestern Vermont Medical Center.
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