Raleigh-Durham-Triangle Deserves a Celiac Safe Gluten Free Event

 This drives me absolutely crazy. Like why are you even bothering to advertise that you have gluten free pizza, and then have in small print -possible chance of cross-contamination, not recommended for those with Celiac disease. Okay, yes I'm glad your letting know that so I don't get sick. But you are going to confuse so many people. #celiac #celiacprobs

This post is being preserved for historical reasons.  The actual situations involved have evolved.  However, it's important for newly diagnosed people to see the kinds of pressures that lead businesses to offer people with Celiac disease inappropriate food choices.  You must always make your own decision about what you will eat after diagnosis.  That includes "events" that "cater" to the "allergy" and "gluten" free community, it includes every restaurant, even the 100% GF ones, and it includes all buying choices.  Even certified GF foods may have a supplier problem and undergo a recall.  Don't trust something just because it's claimed to be gluten free.  Yes, the phrase is a legal phrase.  But if you relax and decide to trust all such claims, and one of them is wrong, it's your health that is hurt.  
 I've had a long standing frustration about the GFAF Wellness Event that runs regional conventions.  When I first attended, I thought, "Great, these are curated businesses that cater to my needs."  Not so.  These vendors are businesses that say they cater to my needs, but might not.  And the event isn't safe for Celiacs or people with Wheat Allergy.  
So where are we?  We're back to claims being made that we as consumers with an illness have to carefully evaluate.  I was hoping for an event that would make me feel safe and feel that there is an abundance of options.  Instead, I felt like I was participating in a marketing experiment..  "Will the gluten free customers buy  your claims?"

So let me clearly answer that question.  No.  Not unless your food or product is Celiac safe, and if you claim Wheat Free, it had better be allergen safe.

I'm sure it's difficult to find local Celiac Safe vendors to participate in any  GFAF Event.  But when I went to the Charlotte event I saw the tip of an iceberg which finally crystallized when the event came to my location: 

" ... I was glutened in Charlotte by a different vendor. And I was told that it couldn't have been that vendor, despite the vendor acknowledging that they aren't celiac safe. I no longer trust this event, after this posting. Neomonde says this on their website: (*Although the following menu items are made without gluten ingredients, because our food is prepared around ingredients that DO contain gluten we cannot state that our food is strictly gluten-free) To me that says not celiac safe. I'm not picking on this vendor. There are plenty of others who think that wheat free means gluten free (that's false, for a start). But I think this event is losing its relevance to the Celiac community. Now that it's over I hope future events will bring a more strict Celiac focus."

I think it's great when local vendors offer gluten free opportunities to our community. But a clear signal must be given if the food is not safe for people with a disease.  Neomonde is trying to do the right thing, they clearly labeled their food as not celiac safe, and used the term "wheat free" which should be a signal to those with Celiac.

However,  wheat free also means something else for those with wheat allergy, it means allergy labeling laws.  So even saying "wheat free" isn't enough.  It can't have "a little gluten" and be safe for Celiacs or people with wheat allergies. This is a Gluten Free and Allergen Free event.  This vendor is neither of these.  This is not the only example of a vendor that I don't consider to be good enough for an event like this (yet... see below for how such vendors can improve).  
The problem is in the selection of vendors, not in the choices local businesses make.  Local businesses will respond to our needs.  But when the largest local event gives the signal that it's okay to blur the Gluten Free and Allergen Free definitions, how will businesses justify the expense and effort required to be helpful to us? This is a medical diet, not an opportunity for an upsell.
 They don't publish the vendor list so I can't be sure if any of the gluten free meal prep businesses were there or not.  It's possible the fees were too high for some of them.  I didn't see them mentioned in the run up to the event, and some of them run small catering companies from their homes.  You can find them on my Resources page, under catering.

Business owners who are reading this, I really appreciate your efforts, but it has to be a product that actually is safe if you're offering medically required food for people who need it.  For many ill people, this is not a choice.  You might reach out to the a Restaurant association and ask them for advice, and also note that a food service certification does exist for gluten free food service. There is training for Allergen Safety as well. I invite you to take part in the training that already exists to support you.  I look forward to being your customer someday, Neomonde and every other vendor who walks this fine line.

Update:  9/5/2018 -- Despite assurances, the event coordinator has not yet posted a vendor list in the event website:   http://gfafwellnessevent.com/     (Raleigh might have different vendors than Charlotte, for example), the only thing available is a sponsor list and a speaker list, but a program with each vendor is not published before the event.  That's why I was using facebbook to track who would be there and using it to decide whether it was a safe event for me.


  1. I support you 100%. I recently went to a gluten-free event in a different city. I was disgusted by the vendors that were there. It seemed like all the organizers were worried about was filling the tables for money and not the Celiac Community. I am not saying this organizer is the same but totally understand where your comments are coming from.

    1. Thanks very much! I think there's a legitimate fear that if vendors were all vetted properly, there would be a crowd of 5-10 vendors and that's all, depending on location. But allowing this to continue drives inappropriate behavior in businesses. The "how gluten free do you need?" question should never be a question. There's a standard. There is training. I don't think there's any excuse anymore. Let those who can't provide celiac safe food, buy packaged items for their gluten free customers and resell it. The way a doughnut shop chain recently introduced gluten free brownies should be a learning example for all cafe's that want to offer gluten free. If they can't do it right in house, they can resell packaged items. There's no shame in the Triangle area, if you resell JP's, or other fully gluten free vendor's products. There's no need to continually make us choose between being safe and being social. I appreciate your comment.

  2. I thought it was worth noting that there are others who have published similar sentiments in their own communities. I referred to them in the article, but didn't identify them. These are probably the three that come to my mind most easily, but it's a sampling. If you want your article on this subject to be included, email me or comment. My goal here is to bridge the divide between GF and safe food for people with Celiac Disease.

    Other articles about Gluten Free VS Celiac Safe:




  3. As a long time blogger for this event, I have to respectfully disagree. Although I am sorry to hear you did not have a positive experience, I know firsthand that this event makes every effort to keep their attendees safe. They have signage all over the event reminding you to read product labels for your safety. They require every single vendor to have clearly labeled items. And despite what you claim above, every event DOES list all of the participating vendors. I am curious if you tried to reach out to the event coordinator at all, as you made no mention of that. As a blogger, I am sure that you know it's best to contact the events directly to make them aware of a vendor that caused you distress so that they can ensure going forward it should not happen again. I am all for your argument that products are still not wonderful about labeling accurately but if it's a problem with a particular product, then bash that particular product vs. the entire event.

    1. Thank you for taking the time to comment. This is an important subject. I will reply in full.

      I did reach out to her more than once, as I mentioned in my article and in the facebook link. I also posted it in a private local FB group where I was sure she would see it. She is certainly aware of my misgivings.

      As for the vendor list, I haven't found it yet. She said she would post it in the FB group, but I imagine that's not the right place for it. If you have a link to it, please post it, I have looked more than a few times.

      As for signage, I saw no signage or any warnings anywhere in the Charlotte NC event this past March. It's possible I missed it, but if you have a picture, you can email it and I"ll add it to the article, I promise. I was new, I thought it was safe. I rejoiced in the 'safety' of the event, but it didn't save me.

      The vendor who I believe glutened me (in March) assured me vociferously that their product was safe and designed for people with celiac disease. There was no individual label on each popsicle though, and when I asked, they said they had no 'boxes' for me to read.

      I later read the faq's of many vendors that I had visited that day. This popsicle vendor was the only one that had a dodgy declaration of how their product was gluten free. I brought this to her attention and she claimed that it was because of a restaurant I had eaten at and nothing to do with the event... that it was fully safe.

      The restaurant had been suggested to me by a local who has Celiac disease and I didn't trust it until I had a look around. It was legit as far as I could tell. And I had been severely glutened, not the shorter length that would happen from CC.

      I think I mostly was upset that she didn't work with the vendor to improve their processes and compliance. Even if she believed that the vendor was safe, she still should've assured me that she had contacted them about the wording in their FAQ. I believe that's her job, but I told myself I was new to this and keeping quiet was the way to go yet. I valued my connection to her more than my personal feelings.

      I still do. I hope someday she sees my criticism wasn’t malicious, that I was making a sacrifice by saying this. That I believe in her ability to fix this.

      I talk back to authority when I think they are making a mistake. A truly protective authority doesn't react defensively when you do that. They say 'thanks for the heads up, I'll handle this" and then later after it's handled, let you know what the outcome was. Or at least that's what should happen.

      I knew how much it would hurt to hear the criticism of my actions, after I said this. I really am trying to help. And I don't think getting into another private conversation about whether a vendor was GF enough would have been listened to. This is hard for me too. But it would've been hard for me to stay silent or be rebuffed privately again too.

      So... now moving to the present.. when I saw the local vendor advertising in the manner above, I decided that was the right time to say something. It had bothered me before how often that restaurant is suggested locally as a GF safe location.

      I don't consider such vendors to be appropriate at all. And the more it's permitted, the harder it is for people with Celiac disease to be taken seriously by restaurants. I think it's selfish to want more options without caring about the quality of those options, or the safety of ill people.

      I'd honestly rather such walk-in restaurants just butt out of the business and let those with the will to have third party certification run the show. What they're doing is confusing and dangerous.

  4. I double checked the vendor that I believe glutened me in Charlotte, and they still haven't changed their FAQ or, to my knowledge changed their products. It was a popsicle vendor and they offered me a chocolate coated popsicle despite knowing that I was Celiac and despite their own faq saying that isn't safe for me. http://www.happyandhealthy.com/nutrition-faq/ Furthermore, they didn't offer me anything so that I could read the ingredients. There is a world of wonderful delicious food out there. And there's nothing wrong with it for most people. However, they shouldn't reassure me that my disease won't be triggered by their product, when they already know their own FAQ says otherwise. And they shouldn't have been invited to vend in the first place. There are more appropriate venues for those popsicles. I still feel that our GFAF event puts us at risk instead of helping us.

    This is what their faq says today:
    I have a Gluten intolerance, does Fruitfull® contain any Wheat, Rye, Barley, Oats or Buckwheat ingredients or by products?

    Fruitfull® does not contain any of these ingredients and has been deemed Gluten Free. However, there are some disorders related to a Gluten intolerance, such as Celiac Sprue (Coeliac) Disease in which the definitions are significantly broad to include not only wheat and wheat byproducts, but also ingredients such as “natural flavorings”. As we are not dietitians, we ask that you consult your family doctor before consuming any frozen fruit bar or other dessert item. For more information visit: http://www.celiac.com or the Mayo Clinic on gluten intolerance at: http://www.mayoclinic.com/invoke.cfm?id=DS00319

    Are the Emulsifiers and Stabilizers in Fruitfull® Gliadin free?

    Much like “Gluten” (wheat and other grain products), “Gliadin” can cause complications for those with a Gluten intolerance. In speaking with the laboratory of the supplier of our stabilizer, they have explained that the stabilizer and thus Fruitfull® bars are Gliadin free.

    None of the products used in the stabilizer are derived from a wheat source. Also…there is only a very trace amount of protein of any kind in the guar gum. This being a legume, would make it a vegetable source.

    FYI – People with the above disorders should not have the Happy Indulgence® bars or Happy Indulgence® Decadent Dips™ bars, as they have chocolate coatings. We would still suggest those with allergies of any kind, check with their doctor on trying new food items for their particular situation and condition.

    That faq is what I remember. I contacted them and they directed me to their faq. And I did contact the GFAF event coordinator, and she did agree that the faq was dodgy, back then. And she did continue to claim that it was something else and not this vendor. And, nothing has changed.

    People with Celiac deserve better than this.


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