With all of the information out there today, it can be difficult to weed out fact from fiction. The internet is a continuously growing source of unmoderated information and strong opinion. While different points of view can be a good thing, they aren't when it comes to managing Celiac. Scientific facts from medical professionals trump personal opinions on the internet ( looking at you Facebook Groups, Twitter, and Instagram ) one hundred percent!
So Who Do We Trust?!
What to look for
Look for support groups which are low on animosity and focus on the positives. While we all need to vent once in a while, it can be emotionally draining to be constantly surrounded by negativity. It's not hard to find a silver lining when everyone you connect with is searching for it too. Support networks big or small, are important to successfully manage Celiac.
Red flags
Anyone who promotes Cheerios as a suitable option for those with Celiac.
See more on why that is a no-no here. This is a hot topic still and I cannot for the life of me wrap my head around why. The main problem here is cross-contamination and lack of transparency about the gluten-removal process from General Mills.
Stay far away from anyone promoting gluten-removed beer as a Celiac safe.
It's not. Heres why: current technology is not reliable as it can't accurately measure the amount gluten in beer. It doesn't matter if it has been treated with enzymes or your Aunt Betty said she drinks it and is fine. Bartenders are not medical professionals and should not be relied upon for accurate information on the gluten-freeness of a drink. Beer made with malt a.k.a gluten-removed beer is not safe for any Celiac, nor is Corona for that matter.
Watch out for anyone who neglects to disclose sponsored material.
This has been an ongoing problem on the interwebs for some time. It's sketchy, in poor taste and lacks authenticity.
Stay away from people who want to sell you essential oils, tonics and cleanses.
None of this will "heal" you and most of them tend to be MLM situations. Don't get caught up in it and you won't be sorry.
Avoid anyone who tells you that they know a "cure".
Although therapies are actively being trialed and researched, there is nothing to date which will allow you to safely consume gluten. There is zero proof that anything currently on store shelves will help with cross contamination or accidental glutening. ZERO. Side note - those pills in health stores that "aid in the digestion of gluten" are not regulated by the FDA and not even meant for people with Celiac.
Advocacy groups and Expos that are sponsored by companies that are not Celiac safe. This is a major conflict of interest. How can we be sure that money hasn't bought a favorable opinion here? Safety first!
Be wary of anyone who relies strictly on the Nima Sensor.
The Canadian Celiac Association recently released a statement cautioning anyone with Celiac or gluten sensitivity against using the device. While Nima could potentially be a helpful tool, it's not flawless and the opportunity for error is simply too risky.
Research and Support You Can Count On
Celiac Disease Center at Columbia University
Excellent post! Thank you for writing this and sharing. I think it is important for others to know that gluten-free doesn't mean celiac safe!
ReplyDelete