The Potential Danger of Celiac Facebook Groups (not mine of course)

facebook and gluten

Yes…a rare late afternoon blog post. Two cups of coffee and an espresso and I’m UP! I’ll make it a quick one.

So on my mobile app for the celiac community, we have a restaurant directory of over 2,600 restaurants (with more added every day). The restaurants are placed in one of two categories.

celiac facebook caution

  1. 100% gluten-free (YAY!)
  2. Not 100% gluten-free but recommended by someone in the celiac community and then personally vetted by myself or someone on my team. And when I say team, I mean one other person. We contact the restaurant, explain who we are and what the app is about and ask them specific questions about cross-contamination and the precautions they take. If they seem to “get it” and take specific precautions, they are added to the app and they are noted with a CC (cross-contamination). If not (or if they don’t respond), they do not get added.

Guaco Taco in Leander, Texas has been on the app from day 1 and they are listed as a 100% gluten-free establishment. But today, I received a message on the app that Guaco Taco is no longer dedicated GF nor are they safe because they “have added flour items to their menu, cooked on shared surface. And fries coated in wheat fried in a shared fryer.”

My first reaction? Total bummer and a loss for the celiac community. But of course I had to confirm before taking them off the app. So I went to their website. No mention of adding gluten. Facebook page same thing. Now of course this could mean nothing, as maybe they just did not update their sites yet. Then I checked out Find Me Gluten Free and two recent reviews said they same thing: they now use flour, shared surfaces and the same fryer. Pretty much the same verbiage as the message to me.

So finally I call the restaurant. The owner answers the phone and I ask if the restaurant was no longer 100% gluten-free. Her response was one of exasperation. “YES…she said…we are still 100% gluten-free!” I tell her that I heard they have added flour to some of their menu items. They did. RICE AND TAPIOCA FLOUR (that’s me shouting…not her). She said a celiac Facebook group posted the misinformation and of course the word spread. She was very sweet, but beyond frustrated. Understandable of course.

So short term…if you are in the Leander, Texas area, Guaco Taco is open for business and is safe to eat at. Tell them I sent ya.

But long term…Facebook has been an issue for the celiac community for awhile now. There’s the fearmongering (gluten is in EVERYTHING). There’s the bad advice (McDonald’s is celiac safe). And of course, there’s always the drama.

Mind you…none of these apply to my Facebook page (lol).

What’s the answer? Besides dropping Facebook, I don’t know. Just please…before spreading anything that could potentially hurt a small business, or a fellow celiac…think twice about what your posting. Do your due diligence. Ask questions.

We’re all in this journey together.

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7 thoughts on “The Potential Danger of Celiac Facebook Groups (not mine of course)”

  1. It depends on the group. Seriously, Gluten Free Living & Recipe Share, plus Celiac Disease and NCGS Support Group are two I do follow and both have administrators on top of comments. Very little misinformation comes through. What does suprise me is the number of people who don’t know how to read a label and are constantly posting “is this product gluten free”- So therefore I push several of the guides available for newbies from several sources: gluten.org/getting started, celiac.com, and beyond celiac. Jules Shepherd also has a guide she wrote. It’s important to learn how to read labels first- and worry less about recipes! Not hard, either.

  2. I was thinking about the title. Facebook isn’t the problem. The problem is ourselves, the celiac community. I’m in several celiac FB groups because I just don’t want to feel isolated and I think they can be helpful sometimes. I like to share things (especially news or studies updates) and read what other post, but the truth is that very often I don’t find a sense to be there. All the post are the kind of: “Is this product GF? (Please read the label, or learn how to, contact the manufacturer, don’t trust the usual I didn’t have any reactions); or can you recommend this restaurant? (If it’s a mixed restaurant, there is a change of CC, we know that, so get in contact with them, ask questions, read their website, etc, don’t trust the usual we went there and everything was fine). This is a common practice in our FB groups. Is pretty rare to see someone sharing (what I think) is also relevant information (studies, guidelines, advices from reliable sources of course). It seems that no one need to know anything else than where to eat or what. And if you ask necessary questions (for instance, I moved to another state and did my research about where to find a knowledgeable GI but wanted to know personal experiences) is hard to get helpful responses. In my case, only one person responded… but the post recommending xxx restaurant (which have mixed reviews and people saying they got glutened there) have 70 comments once and again…. what is the debate? Is false or true that you get glutened there? What are the arguments? No reactions at all. Go. So What are the purposes of celiac FB groups anyway? Our advices has a resonance. We should think about it. So the questions remains, Why we get involved in this kind of communities? How can we provide more tools for our fellow celiacs to take better and informed decisions, to give better advices? Thank you for this late post. And I totally agree, we should check first instead of throwing the first rock. Always double-check, this is one of the golden rules not only for celiacs but for everybody.

  3. This is very sad. Whoever started this could have made a simple phone call and stopped the madness before it started. Celiac’s don’t have a lot of choices eating out. This can put a restaurant out of business. We do not want this to happen.

  4. I think that if a business advertises as 100% GF and someone on social media smears them unfairly, that person should have a legal recourse to defend their market. I think the same about the “Subway tuna isn’t really tuna” rumor that went around recently. The hurdle I see is that there’s no regulation of “gluten free” in restaurants. And same thing about the claim that if you ask for tuna, they’re required to give you tuna. Two simple laws would end this.

    1. Truth in advertising law. Anyone who had a complaint, made it to the relevant trade agency instead of facebook groups.

    2. Having public health departments inspect, along with preventing infectious disease and general sanitation… the quality of cross contamination control in mixed restaurants, and the truth of any 100% GF claim in such restaurants. Then the complaint could got to the health dept. instead of facebook.

    I can hear the, waah, no regulation on restaurants!!! If you want no regulation, then you’ll have to deal with rumormongers. Personally I prefer to have more people employed at the health department keeping us safe.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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