Why a correct diagnosis matters to me

In my research about Celiac disease I've encountered some debate about the value of getting a diagnosis. Some people advocate trying a gluten free diet and not pursuing a diagnosis if the diet "works". Here are some reasons why this is bad advice.

Need to rule out the Placebo effect

First, there are reasons why going gluten free might create the illusion of resolving your problems, when in reality nothing has changed. When your life contracts into a miserable constellation of health issues, there is a lot of internal motivation to find a way to make it stop. Sooner or later you may try a gluten free diet. It seems reasonable that if your symptoms clear up, you must have gluten issues. Case closed. Nevertheless, correlation does not equal causation. The placebo effect is a very real and powerful phenomenon. Celiac disease is diagnosed through blood work, biopsy and genetic testing; not through simple observation.

Need for differential diagnosis

Celiac disease is a systemic condition that can express itself with many possible symptoms -- symptoms that are shared with many other diseases and systemic health conditions. So while Celiac might be a possible diagnosis, so might Crohn's, Colitis, AIDS, Cancer or a host of other problems. It is important to know exactly what the problem is.

Celiac is arguably the best case scenario out of any number of possibilities because it is treatable solely through diet. It would be tragic to assume you have Celiac and go on with your life without realizing that you have a far worse condition left untreated.

In my own case, I was convinced that I had Addison's Disease until the blood work ruled that out. I am still waiting on a positive or negative Celiac diagnosis.

Finding my place on the spectrum of gluten disorders

Symptoms are shared between Celiac disease, gluten sensitivity and wheat allergies. If you are on the spectrum, it would be helpful to know whether or not you have an autoimmune condition.

Celiac is hereditary

If you have Celiac then your immediate family members are also likely candidates. It's important to know what you are dealing with, especially if you have kids.

Conclusion

Judging from posts on various Celiac forums, resistance to getting a diagnosis often seems to stem from distrust of the medical community, fear of the endoscopy procedure or simple denial that one's health issues need to be addressed.

It's true that getting diagnosed may involve some unpleasant experiences. The risks of not pursuing a diagnosis seem far worse.

I want to know.