An outpatient medical procedure, it requires a person to be consuming enough gluten, for enough time in order to trigger the damage to the small intestine that allows for a definitive diagnosis.
- EDITOR’S NOTE: The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) has established clinical practice that the diagnosis of children via a no-biopsy pathway (NBP) with anti-tissue transglutaminase titre ≥10× upper limit of normal (ULN.) 1
Until that protocol is universally adopted, Maureen Gilroy, a celiac and an advocate within the gluten-free community, feels that there are more reasons than not to be biopsy-diagnosed, particularly if a child or adult does not exhibit typical symptoms of the disease.
She has generously compiled a list of reasons in favour of a biopsy diagnosis and I’ve added a few of my own. Some are based on Celiac Canada’s expert suggestions; others are based on situations that people have encountered & shared with us.
Note that a biopsy diagnosis may not be required in every one of the following cases, but it may make it easier to advocate for yourself or a family member.
- Endoscopic biopsy is still the “Gold Standard” for a diagnosis of celiacs disease in North America.
- Eligibility for tax deductions to offset the cost of gluten-free food.
- The province of Quebec offers financial support for children formally diagnosed with celiac disease.
- Eligibility to participate in research trials or qualify to receive potential treatments.
- Medical care providers are more likely to run specific tests ie bone density, Vitamin D etc. These tests may not normally be run for younger people & children.
- One is more likely to be referred to a dietician and / or other specialists for follow up of related autoimmune diseases / co-morbidities.
- A baseline for damage will make it easier to monitor healing, nutrient deficiencies and / or other autoimmune diseases.
- Continuity of follow up care between care providers is improved. If the diagnosis is in question, you may be requested to undertake a gluten challenge to confirm.
- A definitive diagnosis would qualify 1st degree relatives to ask to be screened for celiac disease.
- A definitive diagnosis would inform extended family that they should be monitored on an ongoing basis for this genetically-mediated disease.
- Hospitals may require a formal diagnosis in order to provide accommodations, prepare required meals.
- Schools & programs may require a formal diagnosis in order to provide accommodations ie special food, field trips,
- Secondary educational institutions may require a formal diagnosis in order to provide accommodations ie living arrangements, apartments with kitchens etc.
- Workplaces may require a formal diagnosis in order to provide accommodations and allowances for sick time connected to your diagnosis.
- Nursing homes & hospices may require a formal diagnosis in order to provide accommodations, prepare required meals.
- Official documentation may be required if seeking medical attention while abroad.
- Documentation may be required in order to bring gluten-free food to special events where outside food is not allowed.
- Documentation may be required in order to bring gluten-free food on airplanes or through security.
- A definitive diagnosis improves compliance to the diet. Think stubborn independent teenager.
- A definitive diagnosis will help you self-identify as a celiac, seek out community and live your best gluten-free life!