Is a diagnosis important?

[MichelleDiane]

I had been avoiding gluten because avoiding it helped stop my migraines, water retention, and some less-specific symptoms. I have several uncommon migraine triggers. I hadn't considered celiac. Recently, some possible cross contamination happened in the kitchen, and I'm miserable. 

Now, I'm wondering whether the test is worth weeks of gluten and associated misery. Is there an advantage to knowing whether the problem is specifically celiac? 

[trents]

Welcome to the forum, MichelleDiane!

In some countries, like the UK, there is a government stipend of sorts to offset the expense of gluten free processed foods.

Apart from that, the benefits of a formal diagnosis are mainly relational and psychological. For one thing, it's harder to rationalize and make excuses for avoiding wheat products when you have a formal diagnosis. For another, docs will take you more seriously. And, finally, friends and family may take you more seriously. So, it depends on your personality and relational dynamics whether or not a formal diagnosis will prove to be valuable enough to go through the agony of a gluten challenge in order to ensure valid testing.

[Wheatwacked]

I agree with trents.  Even with formal diagnosis, I have read posts where the patient had biopsy and blood test positive diagnosis from a previous doctor, the new doctor would not believe it and new testing because the patient is gluten free comes back as not Celiac. Catch 22 there.  It is not dissimular from friends and family of alcoholics persisting in believing it is "all in your head". Remember that most wheat products are fortified because the population otherwise is too low in those.

This might be a good read for you. 

 

[Scott Adams]

A possible downside to getting a formal diagnosis would be higher private life and/or medical insurance premiums.

[KHL]

If you're in Canada, the blood test is free, so if you're curious and don't want to go through the hassle of the gluten challenge, I would get the blood test done anyways. I was basically gluten free for 1.5 years before my blood test and it was still a weak positive. As per the advice of the gastroenterologist, I never had the endoscopy because at that point the positive blood test, positive test for the celiac gene (via 23andme), symptoms while eating gluten and no symptoms while eating gluten free was enough for me. 

Just head to your GP and ask for the referral to a lab for the Celiac blood test and other nutrition markers so you have an understanding how you need to supplement.