There are two steps to finding out if you have celiac disease: screening and diagnosis. You should always consult with a physician experienced with celiac disease to ensure proper diagnosis.
Why get screened?
Celiac disease is a lifelong autoimmune disorder that affects multiple parts of your body which can lead to other serious illnesses whether or not you are on a gluten-free diet.
Who should get screened?
- Children older than 3 and adults experiencing symptoms of celiac disease
- First-degree relatives of people with celiac disease – parents, siblings and children have a 1 in 10 risk compared to 1 in 100 in the general population
- Any individual with an associated autoimmune disorder or other condition, especially type 1 diabetes mellitus, autoimmune thyroid disease, autoimmune liver disease, Down syndrome, Turner syndrome, Williams syndrome, and selective immunoglobulin A (IgA) deficiency
There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. For this test to work, you must be consuming gluten. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 40% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease. However, if you are on a gluten-free diet or are a first-degree family member of someone with celiac disease (parent, sibling, child), genetic testing can help to rule out if you will ever develop celiac disease.
A diagnosis can be reached by undergoing an endoscopic biopsy. This procedure is performed by a gastroenterologist and is an outpatient procedure. A biopsy is taken of the small intestine, which is then analyzed to see if there is any damage consistent with celiac disease. The diagnosis may be confirmed when improvement is seen while on a gluten-free diet.
Non-Celiac Wheat Sensitivity
Some people experience symptoms found in celiac disease, such as “foggy mind”, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition, when removing gluten from the diet resolves symptoms.
Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. People living gluten-free must avoid foods with wheat, rye and barley, such as bread and beer. Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger intestinal damage.
Initial and Annual Follow-Up
Once diagnosed, initial follow-up with your physician and a registered dietitian is necessary to monitor nutritional deficiencies and your compliance with a gluten-free diet, as well as assess for associated conditions. You should have an annual visit with your physician thereafter.
Finding the Right Doctor
Celiac Disease Foundation can help you find the right doctor to discuss symptoms, diagnose, and treat celiac disease. Our nationwide Healthcare Practitioner Directory lists primary care physicians and specialists,and dietitians and mental health professionals, experienced in celiac disease and non-celiac wheat sensitivity.