Celiac Self-Diagnosis: Harmful to Your Health?

Most days I would argue that gluten-free has (almost) become a household phrase. Between celiac disease and autism, foodies and the health conscious, and of course the gluten intolerant, gluten-free has really taken off.

The awareness has made it easier to maintain the diet, and isn’t that what we’ve wanted all along? In short, yes. We can eat out at many restaurants without hesitation, enjoy baseball games while still having the option to sip a beer, and snack on chocolate-covered pretzels without a tummyache or the need to run to the nearest bathroom. I know that I am not alone when I say that I am indebted to the awareness that has made all of this possible.

But along with awareness have come a few “side effects”…

Curiosity. We all know someone who has gone gluten-free because of an article they read on the diet’s “healthiness.”

Myths. Gluten-free aids weight loss? Gee, I haven’t heard that one.  

Self-diagnosis. It seems like more and more people are going gluten-free because the diet improves a symptom they’ve been experiencing for years. Or what about your friend who finally found relief from IBS by adopting a gluten-free diet?

It’s wonderful that celiac disease can be treated with a trip to the grocery store instead of the pharmacy, but the dietary treatment (as opposed to a pharmaceutical one) also makes it easier to take treatment into our own hands…without getting proper advice first.

Research indicates that the autoimmune disorder has increased fourfold since 1950, and doctors know that undiagnosed celiacs are at an increased risk of death. Yet the diagnostic rate remains at a meager 10%. So, I have to wonder: How many of the undiagnosed are already living gluten-free? And of those, how many are doing it the right way, i.e. avoiding cross-contamination, monitoring for nutritional deficiencies?

Sure, I have a slight bias working for NFCA, but this topic also hits close to home. Ten months before my diagnosis, a GI doctor told me to “Go gluten-free. See how you feel.” I left the appointment ready to try anything that would get my life back on track.

I eliminated gluten for a month before I realized that my symptoms were alleviated but not totally gone. What was the point of tirelessly Googling foods that were potentially suspect and avoiding my favorite dishes if I was still sick in bed once a week? I returned home for Christmas break ready to enjoy my family’s holiday cookies. 

Fast forward to my diagnosis: I quickly realized that I previously was not maintaining a 100% gluten-free diet, thanks to my morning oatmeal and my lack of concern for cross-contamination in the kitchen. Relying on the Internet without medical expertise hindered the ability to fully improve my health. If I had continued without a formal diagnosis, my poor disease management would have, too.

I’m glad that people are finding relief through the gluten-free diet, but I can’t stress enough how important it is to get tested before starting such a dietary challenge.

Yes, I know, many doctors are totally unaware of celiac disease and may not think to test you. But consider this: If you request the test and get a positive diagnosis, that doctor may just want to vest more time in learning about celiac disease, which could speed future diagnoses. If you self-diagnose, doctors will never know what they missed. And we might never get to the 3 million (diagnosed) mark.

Imagine where gluten-free awareness could be then.

What are your thoughts on self-diagnosis? If you self-diagnosed, what resources did you turn to, and have you told your doctor?

-Kristin