How important is it to get a celiac diagnosis?

[Carolyann]

How important is it to be “officially diagnosed” via bloodwork or biopsy given my history?

Symptoms: chronic loose stools, abdominal bloating & cramps for 10 years. Chronic migraines, diagnosed Hashimotos thyroid (autoimmune) for the past 50+ years.  History of colon polyps for the past 20 years. I am English (some Irish heritage). For several years I have had an aversion to breads & pasta. A little over a year ago I tested positive for HLA-DQ2.5 haplotype. I immediately went gluten free & my signs & symptoms resolved within a short time. I am terrified of going back on gluten in order to be diagnosed & wonder how important a medical diagnosis is given there are no treatments other than going Gluten-free? I’m 73.

[trents]

Some people seem to need an official diagnosis to foster the resolve needed to keep from cheating on the diet. You know, "Maybe it's something else besides gluten." "Or maybe it's just coincidence that I get sick when eating wheat." Other than that, save the bucks. Your improvement when going off gluten is the proof in the pudding.

[Carolyann]

6 hours ago, trents said:

Your improvement when going off gluten is the proof in the pudding.

Trent, That’s pretty much how I feel. I am a nurse & health educator (retired) & I’m pretty confident that my self-diagnosis is accurate & that my symptoms are not some other ailment. Ironically, a doctor friend (also retired) keeps urging me to get an “official diagnosis.” Yet, he cannot give me any strong reasons to be diagnosed by biopsies or blood tests. I see my internal medicine doctor in a few weeks for my annual exam so will  see what she says.

[Scott Adams]

To me it sounds like self diagnosis may work for you. A side benefit will be lower life insurance, and possibly private health insurance, premiums for life.

On the down side it may be harder for you to get follow up medical care, but many people who are diagnosed don’t seem to be getting this anyway. I have excellent health insurance through Kaiser, yet they’ve never offered me any follow up tests unless I’ve pushed them for it.