18 Comments

I have Celiac disease and am very, very careful. I actually appreciate it when a restaurant / food service states that there could be cross-contamination. I usually find out the hard way that something that is labelled as GF, isn't. Eating out or ordering in will always be problematic although I still try - and can't not try when I am travelling.

Those of us with Celiac disease are actually a very small percentage of the population, and most people haven't a clue what it means to us to ingest gluten so it isn't surprising that most restaurant owners don't know much about it either. My own brother thinks I am allergic to gluten and can't understand the difference between an auto-immune disorder and an allergy.

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I do agree a disclaimer is helpful (although the one I included in this post was buried on the business's website, so it would be easy to miss!). But, that's why I always ask questions even if something is labeled gluten-free - I've been burned before by eating fries from a shared fryer because they were labeled GF and I didn't know in the beginning of my diagnosis about cross-contact. Europe seems to have a better understanding of celiac disease and allergens in general, and I usually find it easier to eat out/order food when I'm traveling there than I do here in the US!

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Cross contamination with the fryers, the toaster, the boiling water they use to cook the GF pasta, plus soya sauce and Worcestershire sauce showing up in a marinade, all add up to a scary time dining out. We have to rely on ourselves (and each other) I am afraid.

Thank you for these posts!

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Another excellent post, Christina! Ghost kitchens are so popular now. We get our hopes up when we see a nearby gluten-free menu only to find out that it is not celiac safe. Such a disappointment. The other thing that really bothers me is when a popular gluten-free option has a dedicated space in their restaurant but then an unsafe option cooking out of a ghost kitchen. We build our relationships on trust when living with celiac. If you cannot guarantee all of your locations are safe, then maybe don't call yourselves gluten-free.

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Thanks for reading! Yes, exactly!! And it can be so hard to actually get information on how these businesses are preparing their food as they’re usually not very forthcoming.

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Soooo glad you covered this! Nick and I are blown away by the ghost kitchen popping up on Seamless. Didn’t even think about the celiac angle! Great work 🤘🏽

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Thank you for reading! Yes, it seems like ghost kitchens are everywhere these days. And I've heard from a few celiacs after I wrote this that they've gotten sick from ordering!

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Sounds like they're focused on offering gluten-free food as trendy food. They really are missing out on their potential, but the concept doesn't allow for the time it takes for safe food prep. A few years ago, I created a few recipes for a food hall here in So Cal. After training the staff on how to safely prep the dishes, the business decided to scrap the idea of hyping up the GF dishes because it was too time consuming and difficult for the staff. I could see they got stressed out. This ghost kitchen only lasted two years then it shut down. I honestly think these ghost kitchens are a risky concept and risky investment. Now an AYCE (all-you-can-eat) Gluten-free buffet would be wise! Can you imagine? I always dream about this, lol....

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Thank you for your insights, Lori! Yes, that makes a lot of sense - it's not really a concept set up for safe food prep. It's a shame. Let's open a gluten-free buffet together, lol!

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If I was 20 years younger I would definitely open a Pure Fresh Daily gluten-free buffet, but nowadays, I'm thinking of how to not spread myself so thin, and have a #WFA (work from anywhere) life. But I can't wait to see who will be the first person, somewhere in the world, to open up a gluten-free buffet! Whoever it is will have the ultimate destination spot!

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Those who choose gluten free for the supposed (yet non-existent) health benefits have ruined the gluten free food world for those of us who are forced to go gf for legitimate medical reasons. People really don’t seem to take celiac or severe gluten intolerance seriously, and I think it’s because of all the people who “choose gf.” It’s maddening, because so many of us are forced to go gf and would give anything to eat normally again. It also means that supposedly gf food often isn’t, and we stand a chance of getting sick even when we’re being the most careful.

I’ve spent pretty much all of October sick thanks to eating Cheerios that were labeled gluten free but apparently contained a high amount of gluten. Sure, they’re gf for those who choose the lifestyle, but for those with a legitimate sensitivity, they’re misery in a box. We need businesses and companies to take gluten intolerance seriously, just as they (hopefully) do other allergies like dairy or nuts.

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Thank you for sharing! I totally agree that those who've chosen to go gluten-free as a health trend have made it more challenging for those of us with medical reasons.

I'm sorry that you've spent this month sick! I have a previous newsletter post on oats (which includes information on the Cheerios controversy) and how to choose celiac-safe oats in the US in case it's helpful: https://celiacselfcare.christinaheiser.com/p/are-oats-celiac-friendly

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I love that you posted this on Halloween! My problem is that not everyone knows to look deeper into a gluten free label so many will become sick.

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It's the perfect day to write about this topic! And agreed - I really had to do some digging to find this info (it's buried on the website)! And, many celiacs (especially newly diagnosed) may not be aware that they need to ask questions about how the food is prepared before ordering.

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That is so disappointing to find out about. So really the gluten free options are trendy but not meaningful. I understand how this would be rage-inducing for you.

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Thanks, Tim! It is always so disappointing to learn that gluten-free options aren’t celiac-safe. I wish restaurants just wouldn’t even advertise having gluten-free on their menu at this point since it always just gets my hopes up.

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Yes- I feel like they put them there just to jump on the bandwagon, for people who are gluten-free curious. Of which admittedly there are a lot.

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Definitely! And I’m sure the number of people who are gluten-free-curious is larger than the number of celiacs so I get that businesses will cater to that group…I’ve had better/safer experiences in Europe where allergens are labeled on the menu and they seem to take celiac disease much more seriously than other US—if only I could move there!

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