Benefits of diagnosis

[Kaatzal]

I am being told that I definitely have a wheat/ gluten sensitivity but that whether I have coeliac disease or just an intolerance the ‘treatment’ would be the same (a gluten free diet) and therefore they don’t want to further explore it. However, I am wondering if there is any benefit to being formally diagnosed with coeliac disease rather than leaving it open ended? Is there benefit to it being on official medical documents etc? Thanks in advance

[Scott Adams]

If a formal diagnosis is not in your medical file it's possible that future follow up care may not be covered by insurance, for example follow up antibody tests to see if your adhering to your diet and recovering properly, tests for vitamin deficiencies and treatment if you have them, etc.

That said, I live in the USA and have what would be considered good medical insurance, and I've never had any follow up care except for what I've requested--and I still had to more or less argue to get the handful of tests I've requested during the almost 30 years since my diagnosis. I have a feeling I could have gotten the same follow up tests anyway, even if my diagnosis wasn't official.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. So unfortunately if it turns out you have NCGS then your celiac disease test results may be negative anyway.