2024's Top 20 Reasons for a Biopsy Diagnosis for Celiac Disease

Whether or not to undergo an endoscopic biopsy in order to achieve a definitive diagnosis of celiac disease can be a difficult decision.

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!