Keep Your Medical Records: Why It Matters for Celiac Patients

I was diagnosed with celiac disease in 2013 by a doctor I barely knew. I didn’t have a regular PCP, and definitely not a gastroenterologist at the time. I simply said I wasn’t feeling well, and he ran some standard labs.

The results showed extremely low B12 levels, which prompted me to request a celiac panel. The doctor hesitated, saying it was expensive and time-consuming. I had good insurance and insisted. A week later, I received a call: five out of six tests were more than 10x the normal range. He said I had celiac sprue and needed to start a gluten-free dietimmediately.

Before I changed anything, I requested copies of my bloodwork. That decision turned out to be one of the most important I’ve ever made.

In 2015, I considered participating in a clinical trial for celiac disease. They required biopsy confirmation. I started seeing a gastroenterologist and scheduled a celiac biopsy, which confirmed Marsh 3c damage—even after two years gluten-free. My antibodies were still elevated, though not as severe.

Because I had hard copies of my original blood tests, repeat tests, and biopsy reports, I’ve never had to repeat a gluten challenge or argue with a new doctor about my diagnosis.

These records have helped me:

• Enroll in clinical trials
• See new PCPs or GI specialists
• Avoid redoing painful or invasive tests

While electronic medical records are common today, systems crash, practices shut down, and records get lost. Having hard copies—and backups—can protect your health and save time.

For celiac patients, this is especially important. Once in remission, a gluten challenge can be dangerous and extremely unpleasant. Avoiding it means preserving your original diagnosis documentation.

Helpful Tips:

• Keep physical and digital copies (USB, cloud storage)
• Include blood test panels, biopsy results, and diagnosis letters
• Update with recent lab work annually

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Related Articles from FatCeliac.net:

• Why You Should Never Do a Gluten Challenge
• Getting a Celiac Diagnosis – What You Need to Know
• When Your Celiac Labs Don’t Improve
• How to Talk to Your Doctor About Celiac Disease