Wednesday

Celiac Resources: What To Look For & Red Flags To Run From

When I think of the sea of information surrounding Celiac disease, I'm reminded of how I learned the ins and outs of managing it. Lucky for me, I was diagnosed long before gluten-free had become romanticised by celebrities and diet junkies. It made things easier I think because the information circulating about gluten-free was pure and foreign to most people. Gluten-free was just that; no gray area and no jokes.

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?!

Celiac Resources

What to look for


Bloggers who actively campaign for Celiac awareness without policing the nutritional choices of others. Celiac aside, we all have different dietary needs, requirements, and lifestyles. It's important to find bloggers you can relate to. For example, if you are gluten-free AND dairy free, you would naturally gravitate toward someone who shares that lifestyle.


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.


Advocacy groups which are funded by member and or Government donations. When there is no sponsorship, there is zero potential for conflict of interest. They are also more likely to involve members in every aspect of the organization, making it 100% accountable. Advocacy is a vital lifeline to everyone with Celiac. This is why we need to make sure we're supporting groups which are serious about making a difference.


Facts based on valid scientific researchCeliac is not governed by personal opinion. Period. To avoid clickbait and plain old wrong information, ask yourself:
Is this a trustworthy information source?
Can the facts be verified?
Is there an ulterior motive?
What makes this source reliable?
Where did the information originate?
Is it up to date?

We live in an era where information travels at lightspeed and just because it's out there, doesn't mean it's accurate.


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




The University of Chicago Celiac Disease Center

Celiac Disease Center at Columbia University



Gluten-Free Certification 




1 comment

  1. 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

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