News or Nonsense? Finding Reliable Information About Celiac Disease
A diagnosis of celiac disease can be overwhelming, frightening, and confusing ̶ and that’s without dealing with the actual symptoms. Those two little words are just the beginning: soon you’ll be hearing about tTG and IgA antibodies, HLA-DQ2 and HLA-DQ8 genes, and more. It’s enough to make your head spin.
Where can you find reliable information about celiac disease and the gluten-free diet? In the 25+ years since my diagnosis, the internet has put huge volumes of information about celiac disease and the gluten-free diet at our fingertips.
Unfortunately, much of what’s on the internet is garbage. Many websites, blog posts, and social media feeds are simply unreliable. Social media groups can be great places to share recipes and for emotional support, but they aren’t great sources of medical advice. Some information will be reliable, and some will not. What’s a new celiac to do?
Fortunately, with a few simple precautions, you can sort out the wheat and the chaff.
The 3 key questions to ask
Ask yourself three simple questions when considering the reliability of online information about living gluten free.
Where do they get their money? Look for sources with .org addresses, not .com – the .coms are more likely to just want to sell you something. Major advocacy groups built by and for celiacs will get their facts about gluten-free living directly from the medical community.
Is the content rooted in science? Choose sites that provide meaningful references: studies from peer-reviewed journals. Skip sources that don’t share the source of their information, or that only provide testimonials.
How current is their information? Labelling, ingredients, and the medical world’s understanding of celiac disease is changing rapidly. If the site’s most recent post is 3 years old, their information may be out of date.
You’ll soon notice that much of the information posted by influencers on Facebook, Instagram, and other social media outlets will fail these tests.
Some problems are easy to spot – I once ran across a site that claimed that wheat didn’t actually contain gluten, that celiac disease was all a hoax. That was a obviously a site to avoid! There are other red flags too. Any of the following is a sign that you need to look elsewhere for reliable information:
Selling instant cures or symptom relief
Sites with more advertising than independent content
“Data” that is more testimonials instead of studies
The “doctors” aren’t medical professionals
Anything that sounds too good to be true!
There are no quick fixes or silver bullets for celiac disease or for gluten exposure. While scientists continue to work towards finding a medication that will do either of things, for now the only treatment is adherence to the gluten-free diet and the only solution to symptoms of accidental gluten exposure is supportive care like staying hydrated and waiting them out. It stinks, but it’s our reality.
Trustworthy sources of information about celiac disease
Fortunately, there are plenty of places for celiacs and their families to find accurate information. This is a short list of the types of sites we can rely on:
Reputable medical centers Major medical centers across the United States have opened up departments specializing in celiac disease. These include the Mayo Clinic, Columbia University in New York, The University of Chicago and more. The Celiac Disease Foundation has a complete list here.
National or regional celiac associations Celiac associations exist to help celiacs live with their condition. In the US, The Celiac Disease Foundation and Beyond Celiac are my go-tos. In Canada, I relied on Celiac Canada. In the UK it’s Coeliac UK. Across Europe, the Association of European Celiac Societies lists all of their members here – 38 as of this writing. Wherever you are, look for a national association. They are usually on the major social media channels.
Interviews with reputable experts I follow the Celiac Project Podcast, where Cam and Mike interview top experts in celiac disease medicine (full disclosure, I appeared on this podcast once too). I like hearing the experts speak directly about their research and the ways they help celiac patients manage their health.
Major medical journals Start reading what the doctors read. Search the National Institute of Health’s National Library of Medicine at PubMed. Read relevant articles in the Journal of Gastroenterology or other peer-reviewed publications. With time, you’ll get used to the medical terminology. It helps to be able to talk to your own doctors about the latest research.
Educational programs The Harvard Medical School’s Celiac Research Center hosts regular “Ask the Expert” webinars that are free and open to the public. Beyond Celiac does too. They’re usually about an hour long and provide the latest, most reliable information about celiac disease and gluten-free life.
Independent sources In the celiac world, we are fortunate to have some advocates who have been working on our behalf for years. One that I rely on is the Gluten Free Watchdog, Tricia Thompson. She follows up on reports of mislabelled product, independently testing products and issuing reports about their gluten-free status. Andrea Tucker’s Gluten Free News podcast is a daily newsflash of curated information that often leads me to other reliable sources.
Government websites The best way to understand a product label is to start from the regulations. Once you understand what the government requires a company to say, or prevents them from saying, you can put the label information in context. Read the regulations for the US, Canada, or your home country by going directly to the government’s website.
Can we trust food manufacturers?
This is always a touchy subject. Like me, you've probably invested hours in calling customer service lines to find out whether a product is safe to eat. Companies have a financial incentive to get us to buy their products, especially since we pay so much more for them than for non-gluten-free alternatives. The companies are also regulated by their government agencies, and most do take their responsibility to comply with labelling laws seriously.
Companies that have been serving the celiac community, like Bob’s Red Mill, know us and understand our needs, and I consider them generally reliable. I used to say that the big-name companies were reliable too. Then came the Cheerios debacle, with General Mills’ questionable testing protocol (see an excellent overview from Gluten-Free Watchdog here). Now I’m a bit more cautious - it comes back to the idea that something that seems too good to be true (gluten-free cereal varieties that kids love) probably is. Buyer beware.
In general, the people you talk with when you call a company use pre-approved scripts to answer questions. They don’t have first-hand knowledge of a product’s ingredients and production processes and may not know where to find it. By all means, call the companies and ask detailed questions. Information about ingredients and production is critical for making informed decisions. Just be prepared to keep digging or to ask to speak with someone more knowledgeable.
Use your judgement
The final answer on whether a product is truly gluten free or is worth taking a risk on is up to each of us, for ourselves or our celiac children. I’ve developed my own levels of comfort with certain products that might not work for you. I have met celiacs who restrict themselves far more or far less than I do. Ultimately, our bodies will tell us if our choices are right or wrong. Finding reliable sources increases our chances of success, and of living long, healthy, gluten-free lives. It’s up to each of us to figure out what to believe when managing our celiac disease. Identifying reliable and unreliable information sources is the first step to making healthy decisions. Knowledge is power!