Celiac Self-Diagnosis: Harmful to Your Health?

December 27, 2010 at 10:07 am 5 comments

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?


Entry filed under: Kristin. Tags: , , , , , , .

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5 Comments Add your own

  • 1. Katrina  |  January 7, 2011 at 2:53 pm

    I self-diagnosed because my dr was an idiot and wouldn’t test me for celiacs. But now I am going to have another, better dr gene test me, and also test me for soy and dairy. I already know I’m celiac because of family history, but itsvimportant to have it on record

  • 2. Alysa (Inspired RD)  |  January 7, 2011 at 3:20 pm

    You make very good points. Testing is key and gluten-free should not be a “fad” diet for everyone to try.

    • 3. Kristin  |  January 7, 2011 at 4:01 pm

      Thanks, Alysa. I’m passionate about this topic, and I love meeting healthcare professionals who are, too!

  • 4. Amanda  |  January 8, 2011 at 12:33 pm

    I had a suspicion that I had Celiac – and after pushing my doctor for it, I finally got the blood test and tested off the charts. I was told to “go gluten free.” That’s it. I had no back-up until my mother and mother-in-law jumped on board. Together we were able to research all the do’s and don’ts. So for me, seeing a doctor wasn’t particularly useful as I still had to scour out the answers on my own. (I even went to a nutritionist that wasn’t of an extreme amount of help — just pointed at a few resources and said “Here you go!”). I feel that if more people WERE diagnosed that there would be a greater awareness of it for doctors and they would be of more help to their patients. (Mind you, I’m 22 — at 11 I was diagnosed with irritable bowel syndrome and at that time there wasn’t a single mention of Celiac disease — it took 11 years just to finally get to the bottom of it). So if it has taken 11 years for me to finally get my diagnosis, there is definitely a lack of push to get people tested and to secure for them the resources they need. Doctors and nurses need to be educated on this. And I can say that in full confidence because I’m an RN.

    • 5. Kristin  |  January 10, 2011 at 11:42 am

      Thanks for your comments Amanda! Our personal experience with the diagnosis, physicians, and dietitians is very similar. I also was diagnosed with IBS several years prior to my celiac diagnosis. NFCA recognizes the great need for physician education. In fact, last July NFCA launched http://www.CeliacCMECentral.com, a free accredited activity for primary care providers. Please check it out!

      I would welcome an opportunity to discuss the need for education and share NFCA efforts with you. Please let me know if you’d be interested in continuing this conversation as I’d love to hear from you! My email is: kvoorhees@celiaccentral.org.


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