Are you frustrated by . . .

Photo of a frustrated male-presenting person sitting at a laptop in a café.

Companies who seem unwilling or unable (too inept?) to provide helpful information when you write or call to find out if their “gluten free” product (or dairy/egg/soy/etc. free product) is actually safe?

I am working on a huge project, and this is my starting ground. I can’t do it without help from the Celiac & Food Allergy communities. 

I have created this form that I would like you to fill out (you can fill it out over and over to share as many frustrating experiences as you have had), and would appreciate you sharing it.

This can be any type of place that is saying that they are gluten free, Celiac safe, “gluten friendly” (yes, it’s a terrible term), allergy friendly, allergen free, et cetera: Manufacturer, Local bakery, local chain bakery, grocery store, restaurant, coffee shop, hospital, and so forth.

Did they tell you contradictory information? Did they tell you they cannot guarantee the gluten free status of any of their GF products? Did they tell you they can’t tell you? Did they tell you that they use various processes (ex: GMP) that don’t mean anything to you (and when you ask for clarification, it doesn’t make any sense as to how that would prevent cross contamination from something that isn’t a bacteria?)?

I’ve received a lot of ridiculous replies over the years, and I know I’m not alone in this. The data I collect from this will hopefully help me make things safer for all of us.

I want to hear about your experiences when reaching out to these types of places (or ones I haven’t listed) while trying to find out if a product (edible or not), or a situation (overnight/multi-night stay in a hospital) was going to be safe for you or your loved one.

All responses will be anonymized in my project, but I am asking for your email at this time in case I need to reach out to you to clarify what you’ve told me.

At this time (8 June 2024) there is no end date as to when you can submit your response(s), but the sooner I start receiving your experience(s), the sooner I can try to make a difference.

Thank you in advance!

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