How to figure out if a restaurant is safe for me?

The struggles of a person with celiac disease when eating out in a world full of gluten containing foods

Eating out is a complex endeavour for someone with a celiac disease, some might even say it’s ambitious. I, personally, don’t think we have to avoid it completely, but have to be careful about what and where to eat. In every kitchen, there are crumbs here and there. Consequently, food cooked in kitchens that aren’t gluten-free is likely to be cross-contaminated. It’s not hard to see why eating at a restaurant can be unsafe. It’s easy to find reviews of people getting “glutened” even with an assurance from the restaurant.

For those who tell us not to eat out if it is that problematic. You’re right. Let me tell you that most celiacs have learnt to cook the food we crave, even if it takes 2-4 hours. And with the cost of gluten-free food, we find it easier to cook at home to save money anyway. Trust me, we don’t want to eat out and risk our health. Most of us have reduced the frequency of eating out and doing the best we can to avoid it.

That being said, we do want to hangout with friends (celiac or non-celiac) as much as you do. We do want to travel, see new places, go on dates, and other things that humans do. I can’t keep hosting dinners and tea parties all the time, it is work. Sometimes, it is nice to just be hanging out with friends without the responsibilities of a host. All I ask is for eateries to be honest about accommodations to my dietary needs.

The point is: it is difficult to find restaurants that are safe for celiacs. I don’t mean to say it’s relatively harder than finding a restaurant. I expect that. I mean it is difficult. Today, I’ll share what I do to find safe restaurants, test them, and share them with other people living with celiac disease.

Before I go to a restaurant

In broad terms, there can be two types of situations when you eat out. First is when you can control where to eat, while the second where you have limited or no control. For the latter, one way is to follow the steps you would take for the former, and inform the organiser while suggesting some safe options. Suggestions may be ignored completely though; in that case just remember to only eat what you feel comfortable with, don’t succumb to social pressure. Maybe just order a drink instead of food. 

Now, let me share what I do when I can control. Before I go into a restaurant, I read their reviews on google maps (or Find me GF). This may vary depending on what apps people use most where you happen to be. I go into the reviews and search ‘gluten’, which shows only the reviews which contain the word ‘gluten’. Usually, people have said something about it, but if it returns no results that restaurant is either new, or doesn’t offer any gluten-free options. It’s best to go to the next step. If the reviews say anything that indicates that this restaurant isn’t safe, I wouldn’t go there.

If people have left good reviews about gluten free options, I can usually see if some reviews talk about safety for celiacs as well. Then I go to the next step of checking their menu. If they have marked GF on their menu on some items, it is a great sign. This generally means that servers are aware of gluten-related issues.

The next thing I do is to call them. The call is to verify if they know about celiac disease. If I ask them: “Do you have any options for celiacs?” and they respond with confusion, that’s not good. I wouldn’t go there easily unless some other celiacs recommended it.

On the call I ask the following questions:

1. Do you have options for celiacs?
   If they don’t know what celiac disease is, or there’s hesitation in their ‘yes’. That’s a bad sign, but I still follow it up with ‘gluten-allergy’, which they usually know. You can usually know by this time. If you feel good about the place, but you can ask more questions.

2. Do you have a dedicated gluten-free fryer?
   Both yes or no are fine, it just helps me to know what all I can eat there or not.

3. What steps do you take to avoid cross-contamination?
   At this point, they will explain a few precautions that they consider to mitigate cross-contamination. Usually all restaurants will warn that there still are chances of cross-contamination (as with a shared kitchen it is impossible to eliminate those). But that’s ok, I would rather have them be aware of it than be delusional.

At this point, I would generally know if I can go there or not. I’ll sometimes just decide by the answer to the first question based on how introverted or extroverted I am feeling at the moment.

After I eat at a restaurant

After I eat at a restaurant, the next few hours and days are like a lottery. The final test of a restaurant begins now. To add the restaurant to my safe-list, I must not get any symptoms for the next few days. I monitor my symptoms for about 4 days. If I keep well for 4 days, I add that restaurant to my safe-list.

Side note

It is helpful to be aware of the nocebo effect. Nocebo is when one experiences a negative medical effect because of a negative expectation. If the service of the restaurant wasn’t good, or the cleanliness of the restaurant wasn’t great, we can ‘feel’ that there will be gluten in the food. We are all vulnerable to this, it can get in the way of self-reporting a symptom correctly.

Keeping a record

My log book

My suggestion is to list out your symptoms, pick a few most common ones and most easily noticeable. I would also encourage you to find symptoms that are less likely to be nocebo. For example, for me it is little boils behind my ears, which can bleed. While there are other symptoms like loss of appetite which can be affected easily by nocebo.

Once you eat out, write the name of the restaurant. Pick a few easily distinguishable symptoms and start noticing them each day. Make a mark on a paper with dates everyday signifying yes or no for each symptom. If you keep well for the next few days, you can add the restaurant to your safe-list.

The drawback of this method is that some weekends we can eat out multiple times at multiple places. If you get any symptoms, it is impossible to know which meal caused issues. However, if you don’t get any symptoms, all of the places can be considered safe.

A logbook is an incredibly helpful way to figure this out objectively. Of course, there is still the subjective side of interpreting and feeling the symptoms, but choosing them carefully mitigates the risk. Without a journal we may even forget how it felt a couple days ago. As an exercise, try to remember how your poop was 4 days ago? We don’t remember this with full confidence. Right? The logbook helps record correctly.

Let me know if this helps you, or what your thoughts are about it in the comments section. There is more to say about the topic, however I’ll save that for another day when I am wiser.