How to Get Diagnosed: FAQs
How Do I Know If I Have Celiac Disease?
Many individuals with celiac disease may go undiagnosed, with an estimated 1 in 5 people with the condition never realizing they have it. The slow progression of intestinal damage and varied symptoms contribute to the challenge of obtaining a timely diagnosis. However, the ONLY way to confirm Celiac disease diagnosis is through biopsy.
What should I expect from the diagnosis process?
If there’s a family history of celiac disease or if you have certain medical conditions, such as type 1 diabetes, autoimmune liver disease, thyroid disease, Down syndrome, Turner syndrome, or Williams syndrome, it’s crucial to discuss testing with your doctor. The biopsy procedure is usually relatively quick and minimally invasive. After diagnosis, you should expect conversations with a dietician and gastrointestinal specialists for the next steps.
What is a "gluten challenge"?
To accurately diagnose celiac disease, certain tests are necessary, and gluten consumption is required for accurate results. If you’re on a gluten-free diet, a “gluten challenge” plan may be implemented, involving the daily consumption of at least two servings of gluten for eight weeks. Many clinical trials and studies also involve gluten challenges.
What are the types of tests I should expect?
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Blood Test: Initial tests may include a blood test to check for specific antibodies associated with celiac disease.
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HLA Genetic Test: An HLA genetic test may be conducted to identify the presence of HLA-DQ2 and HLA-DQ8 genes, which are associated with celiac disease.
What long-term changes would I have to make to my lifestyle?
This is very dependent on your personal medical situation and the evaluation of your specialist. However, these are some possible outcomes:
- Gluten-Free Lifestyle: In cases where the biopsy confirms celiac disease, lifestyle adjustments, such as adopting a gluten-free diet, are typically recommended.
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Non-Celiac Gluten Sensitivity: If celiac disease is ruled out, but gluten is suspected to be the cause of symptoms, one might be diagnosed with “non-celiac gluten sensitivity,” indicating an adverse reaction to gluten despite the absence of celiac disease.
Want more information?
If you suspect you have celiac disease, it’s important to consult with a healthcare professional for proper diagnosis and guidance. Here are resources to help you understand the diagnosis process for celiac disease:
- Celiac Disease Foundation (CDF) – Getting Diagnosed:
- Website: Celiac Disease Foundation – Getting Diagnosed
- Overview of the steps involved in getting diagnosed, including common tests and procedures.
- Mayo Clinic – Celiac Disease Diagnosis:
- Website: Mayo Clinic – Celiac Disease Diagnosis
- Information on the diagnostic process, including blood tests, genetic testing, and endoscopy.
- Beyond Celiac – Diagnosis:
- Website: Beyond Celiac – Diagnosis
- Resources on testing options, understanding results, and advocating for proper diagnosis.
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) – Celiac Disease Diagnostic Testing:
- Website: NIDDK – Celiac Disease Diagnostic Testing
- Detailed information on diagnostic tests for celiac disease.
- Gluten Intolerance Group (GIG) – Getting Diagnosed:
- Website: GIG – Getting Diagnosed
- Information on tests, the gluten-free diet, and preparing for a doctor’s appointment.
- WebMD – Celiac Disease Diagnosis and Tests:
- Website: WebMD – Celiac Disease Diagnosis and Tests
- Overview of the diagnostic process and commonly used tests.