Over the course of the past week, the NFCA, Yahoo, the UK-based Press Association, and others have all reported on a Celiac study whose results were shared at the 43rd annual meeting of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition, which took place in Istanbul June 9-12. The study, led by Dr. Nadeem Afzal of Southhampton General Hospital in the United Kingdom, looked at the Internet habits of parents of children with suspected Celiac Disease prior to seeing a doctor or dietician. It looked at factors such as the prevalence of parents using the Internet for medical information, and measured their knowledge of Celiac Disease, gluten, the gluten-free diet, and more.
The commonly cited results were intriguing. For example, they found a wide variability in the reliability of Celiac- and gluten-related information found on the Internet. (No surprise.) They also found a relatively high rate of self-diagnosis on the basis of symptoms and Internet information. (Again, no surprise.) As for knowledge of the gluten-free diet, 45% of parents incorrectly thought that corn contained gluten. (Seems surprising, but it’s not. I’ll explain.) Meanwhile, 98% of parents correctly identified that wheat contained gluten. Overall, just 38% of parents correctly identified all gluten-containing foods in the study’s questionnaire. (Alarming, but not surprising.)
For me, each aspect of the study’s results could be expected. It’s no surprise that there’s a very wide variety of information on the Internet pertaining to CD and gluten. Some of it – from trusted, credible sources – is highly reliable. Some of it is what Dr. Afzal termed “quackery.” Much of it lies somewhere in between. Nowhere may this be more true than in the blogosphere, where us GF bloggers range from people who blog professionally to people who blog once in a blue moon, sharing a recipe here or there as a hobby. I’ve said it before here on NGNP – you must be your own best advocate. When it comes to GF bloggers, ask yourself – What are their credentials? Have they established themselves as a trusted, reliable source of accurate information? Is the blogger a doctor? A nutritionist? A journalist? A cookbook author? A passionate self-educated foodie? Can they speak to the topic with direct authority? And if not, do their blog posts cite reliable sources that lend credibility to their info?
As for the high rates of self-diagnosis, this, too, doesn’t surprise me for two reasons. For one, we still live in an age when many doctors and other health care providers are not fully up to speed on Celiac Disease, gluten intolerance, etc. That’s part of the reason why the 2-3 million Americans estimated to have Celiac Disease live for years either undiagnosed or misdiagnosed, and why the mission of organizations like the National Foundation for Celiac Awareness is so important. In response, we – the gluten-free community – use the Internet to become empowered, knowledgeable patients. In the absence of doctors who can help us, we help ourselves. What’s more, as I discussed when I did my three-part series on CD and health care reform in the United States, a positive diagnosis with Celiac Disease often exposes a person to the threat of being dropped from their health insurance. That negative relationship between Celiac Disease and health insurance incentivizes patients to diagnose themselves, in order to keep a formal CD diagnosis off the record. (Thankfully, in both cases, things are improving – more and more doctors are becoming knowledgeable about CD, and ongoing health care reform is helping to ensure that people with CD can’t be dropped on the basis of an existing condition or new diagnosis.)
It may seem surprising that 45% of parents incorrectly thought that corn contained gluten…until you consider this. The study examined 55 children and their families in England. And England, it turns out, has a habit of referring to “corn gluten,” which refers to the proteins found in corn. Now you can see where the opportunity for confusion creeps in. It’s akin to mistaking buckwheat for containing gluten, simply because buckwheat has the unfortunate luck of containing the word “wheat” in its name. Gluten, remember, is a family of proteins. It’s not one single thing. And it’s not all gluten that makes us sick. It’s specifically the glutens found in wheat (glutenin and gliadin), barley (hordein) and rye (secalin).
Finally, just 38% of parents correctly identified all sources of gluten. We all know what a steep learning curve the gluten-free diet can have in the beginning. I’ve said it before, and I’ll say it again – at times, it can seem like a Gluten Gauntlet. Anyone new to the gluten-free diet will take time to become knowledgeable. Even under the guidance of a doctor. So let’s cut these parents some slack. They’ll get with the program…they just need time, and more information.
Before I conclude this post today, I also wanted to share a few extra tidbits of info from the study that weren’t shared in any of the news reports I read. (If you want to read the detailed abstract of the study, click here and search the PDF for “PO-G-126.”) Firstly, when asked about their number one concern regarding Celiac Disease and the gluten-free diet, parents’ top worry was the social implications of the diet, especially children’s parties. I think any of us who are parents to young GF children can relate to that. Food should be inclusive and social, but in the context of children’s parties and gluten (or food allergies more generally), it can be exclusive and isolating.
Secondly, the top predictor of knowledge about Celiac Disease and the gluten-free diet was knowing someone else who had CD. So for all of you reading this blog – if you have Celiac Disease, or gluten intolerance, or wheat allergy, or whatever – remember this… You are your family and friend’s best source of information. Look out for yourselves, but also lend a hand and look out for them, too, in the form of awareness and information.
– Pete