It's exciting to see all of the gluten free products available today. I've heard that 10 years ago, 5 years ago, and even 1 year ago shopping for gluten free items often required trips to multiple stores and online shopping.
It also seems like every day another restaurant announces that they have gluten free menus. Also awesome.
Or is it?
When I mention to people that my son was diagnosed with Celiac Disease and that he is gluten free, they almost always immediately respond with a comment like "Oh, I saw the other day that Joe Schmo's Pizzeria is offering gluten free pizza. Have you tried it?" Ugh.
Don't get me wrong. I'm excited that many restaurants are trying to offer gluten free menu items. But I know it is my responsibility as Celiac Son's mother and advocate to make sure that not only the food is truly gluten free, but also that it has not been cross contaminated, and that the kitchen and wait staff at a restaurant have a true appreciation for the fact that his food cannot touch any other food in the restaurant. Period.
There are a few lists that I have found online like this one about the top gluten free chain restaurants, or this one 75 Essential Gluten Free Restaurant Menus You Need to Know. And although it is nice that there are lists like this, for those with Celiac Disease, these lists are just a starting point. The real research is not in these lists, but what comes after. There are some vital questions for Celiacs to ask at restaurants such as:
1. Does the restaurant's kitchen have a dedicated cooking area to cook gluten free foods?
2. Do they use separate cooking utensils, colanders, pans, and grills?
3. Are toppings (think pizza toppings) separate from the non-gluten free toppings?
3. Do they bake any items with flour in the same room as they are cooking gluten free items as flour can stay airborne for up to 24 hours?
4. Has the staff been properly trained on how to handle gluten free items?
5. Does the staff know WHY keeping gluten free foods separate from the rest of the food is important?
This is serious stuff. Sometimes even I can be completely overwhelmed by it in my own kitchen! I find myself putting my son's life in the hands of strangers each time we eat out at a restaurant. Is it worth it?
Well, I need to consider that question from my son's perspective. Eating out is a very social event. It's something we've enjoyed doing both together as a family and socially with friends his whole life. Celiac son loves that he is feeling better now that we've figured out what was making his tummy hurt. But he is a social animal. He wants to get out of the house and be around other people. And sometimes that means going out to eat at a restaurant. Lucky for us, restaurants are becoming more and more aware of gluten free lifestyles and Celiac Disease. I am hoping that this post will help those in the restaurant business to understand what going out to eat as a Celiac truly means and the measures that must be taken to keep my Celiac son and all Celiacs safe while they are in the hands of others.
Since I've been blogging about our family's journey with Celiac Disease, I've come across a number of other bloggers in the Celiac community that have been sharing interesting and relevant information about Celiac as well as those who are either gluten intolerant or choosing to eat gluten free for other health reasons. I've asked 4 members of that community if they would be willing to let me "interview" them about what it's like eating out at restaurants now that they are gluten free.
First, I will introduce my interviewees. Following the introductions is the interview. You may be surprised to see where answers are similar and where they differ.
Kaila is a 20-something young professional. She was diagnosed with Celiac Disease while in college and credits her mom for helping her navigate her Celiac diagnosis while in college.
Follow Kaila on her Blog: GlutenFreeLife247.com
Chris is the father of a teenage boy who was diagnosed with Celiac Disease 6 months ago. Chris offers a dad's perspective, and is committed to not allowing Celiac Disease define his family.
Follow Chris on his Blog: CeliacTeenDad.com
Jill: Celiac Disease runs in Jill's family. From her 94 year old grandmother down to her 5 year old daughter (and Jill in between). Jill lives in the UK.
Follow Jill's blog: GlutenFreeLivingOurStory.blogspot.co.uk
Kathleen is the mother of a gluten free child who was diagnosed as a Celiac as a baby. She writes about her experiences at Celiac Baby, and also offers consultations to help others make gluten free living their new normal. Kathleen lives outside of Toronto, Canada.
Follow Kathleen's Blog: CeliacBaby!
CELIAC'S EATING OUT AT RESTAURANTS: TO DO OR NOT TO DO?
Do you (or does someone in your family) have Celiac Disease? Are you gluten sensitive? Other?
20-something: I'm a celiac with seven allergies, so eating out is always an adventure! Since I'm the only celiac in my group of friends and family, it's important to me to feel "included" on outings (even though I'm 22!). Plus, I've lived in four states in the last year. While I've set up five kitchens during that time, it's nice to be able to eat out during the transitions.
Celiac Teen Dad: My son, Cam, was diagnosed with Celiac Disease in September of 2013. He is the only person in each of our extended families to be “officially” diagnosed with the disease, which we find odd since it is so closely tied with genetics. Before Cam’s diagnosis, I, honestly, could have cared less about “gluten-free”. I thought that it was just another fad diet being pushed into the consumer’s face. It was when I witnessed the pain that Cam was going through that I knew my new role was to become an advocate for him and for other people with Celiac. I needed to teach those who had the same ignorance to the cause that I used to have.
UK Celiac Mom: My brother was diagnosed about 10 years ago after being very ill for a while. I was diagnosed around 4 years ago after nearly 20 years of symptoms, my youngest daughter when she was just 5 in 2012. My 94 year old Grandma self diagnosed recently after years of suffering and felt much better. Our family life is ruled by gluten free living!
Celiac Baby: I am the mother of a gluten free 5 year old. My son was put on a gluten free diet at just under 2 years old by his physician. Our family has been eating gluten free for over 3 years, and we all follow the diet to support him.
Do you eat out at restaurants?
20-something: I do! But, I'm very selective about where I'll eat, and I'm comfortable bringing my own meals to restaurants.
Celiac Teen Dad: Yes, we continue to eat out at restaurants. Our daughter is 10 years old and still enjoys eating out and trying new foods. We are not going to deprive her of this experience and let this disease control what our entire family does. We just make sure to be more careful now when doing so.
UK Celiac Mom: Yes, not often though, around once a month.
Celiac Baby: Yes, we eat out at restaurants. I think it’s important that my son learn how to navigate restaurants from a young age. I don’t think people with Celiac disease or gluten sensitivity should be deprived of enjoying a meal out.
How do you let the wait staff know that you are gluten free? What terminology do you use? Do you ask to speak to the chef? Do you call ahead?
20-something: Lots and lots! Most people remember me, so I'll only call ahead (or email) the first time I dine at a restaurant. There are a few places that request I pre-order, especially if I'm going out for NYE or a big celebration. My go-to tool besides talking to a chef and/or manager are my allergy business cards. I never leave home without them, and I give one to everyone from my waitress to the chef!
Celiac Teen Dad: Prior to us even ordering our drinks, we let the wait staff know that Cam has Celiac Disease. We want the staff to realize that this is a disease and that it is a very dangerous situation. We’ve found that using the word “disease” gets the staff’s attention a little more than saying that we are gluten free. My wife has even said to the staff, “if our son eats gluten, he dies.” That drives the point home pretty well. If we still get a dumbfounded look from the staff member (and we’ve all seen this look), we’ll take the time to explain to them what Celiac is and ask also to speak with the manager. I have never called ahead to specifically ask about a gluten free menu. If I am on the phone with the restaurant and making a reservation, I will make it a point to ask about their gluten free offerings but I mostly use the technology of my smart phone rather than calling.
UK Celiac Mom: We often call ahead, especially if we are trying somewhere new. I often speak to the head of staff to discuss options to double check whether a listed item is gluten free. Checking what their fryers are used for often helps define whether chips for example are gluten free or not. Staff seem to be getting much better at understanding what gluten is.
Celiac Baby: Even if I’ve called ahead, I still speak with the waiter and sometimes ask to speak to the chef. I explain that my son can’t eat gluten, meaning nothing that contains wheat, barley, rye, etc. I explain that he will get very sick if he eats any gluten. If I don’t think my concerns are being taken seriously, we’ll leave. That’s only happened 2 or 3 times over the past 3 years.What could restaurants do to make things easier for gluten free patrons?
20-something: I think restaurants should have a binder that lists all the ingredients in a dish that is open to patrons upon arrival. In my dreams, everyone would have a dedicated gluten free section of their kitchen to help prevent cross-contact/contamination, but that's not a reasonable request.
Celiac Teen Dad: I defer my answer to Cam on this one since he is the gluten free patron in our house – “It would be nice if all the restaurants had a gluten free menu that was easy to find. Now, I have to either ask for a separate menu or I have to look to find the little “GF” symbols next to the foods to see if they are safe. If they listed all the gluten free foods together on the regular menu, not the one we have to ask for, that would make it easier for me to look at. I also would like to know if the restaurant has a dedicated gluten free cooking area. That is almost never listed and would make me feel safer if I knew that they had this."
UK Celiac Mom: Offering more choice. I get so frustrated as when I cook at home, you can make so many mainstream meals gluten free just by switching to a gluten free flour/stock cube with little or no extra cost. If restaurants did this as standard, it would open up the menu for coeliacs. Also, I find it really difficult eating out with my daughter - I have yet to find a UK restaurant which offers a gluten free child menu other than pizza hut. It is so hard for her to eat differently to her sister.
Celiac Baby: Overall, I think restaurants who choose to offer gluten free items should be committed to ensuring they are truly safe for those who suffer from Celiac or gluten sensitivity and not just choosing to cut gluten from their diet for non-health reasons. I think they need to take gluten free patrons as seriously as they take those with severe allergies.
Do you think all restaurants should try to offer gluten free menu options? Why or why not?
20-something: It would be nice, but it's not where I would aim my efforts. I would prefer to have a few restaurants in each city that are careful about cross-contact/contamination. And, the new trend of 100% gluten and peanut free cafés is one of my favorite!
Celiac Teen Dad: My opinion on this is going to differ from many but I don’t think that all restaurants need to have these gluten free menu items. Some of the responsibility of eating gluten free and making the right choices needs to land on the person with the special diet, or in our case, that person’s parents. If you or your child has a gluten free condition, don’t go to a restaurant that has the word “Bread Company” in their name. You know that the chances are few and far between that this company would have a dedicated area for gluten free so why risk getting sick by going there? You don’t go to a Chinese restaurant and order spaghetti. Why would you go to a bread company and order gluten-free? Choose from the numerous other restaurants where you know the food is going to be safe for you.
UK Celiac Mom: Yes, even if it is limited, there should be something on offer.
Celiac Baby: The truth is, almost all restaurants offer gluten free menu options, or at least have the potential to offer them. Meat and vegetables, soups & salads can also easily be modified to be gluten free. The bigger issue is around how these items are prepared and whether the appropriate measures are being taken to avoid cross-contamination. I don’t expect restaurants to offer special gluten free options, because each restaurant should be free to choose their own menu. However, I do think that if a restaurant is going to label menu items as being gluten free, they should be committed to doing it right.
Have you had any bad experiences eating out at restaurants?
20-something: Yes, but not too many. While I avoid these restaurants in the future, I try not to be too harsh because I'm never 100% positive it wasn't my belly acting up for other reasons. One of the difficulties eating out is finding an option that is both GF and free of my allergens. So if anyone in Boston wants to open up a bakery that makes gluten, dairy, and egg free treats without tapioca flour (my pesky allergy), I'll come all the time!
Celiac Teen Dad: We’ve actually had a harder time at our school cafeteria than we have had eating out at restaurants. Cam’s only complaint when eating out is the quality of the food. When we first started his gluten free diet, some of the food that we had was terrible. We went to a pizza place once where the pizza crust was the consistency of wet cardboard. We’ve also discovered the hard way the problems with “same line contamination." Good examples of this are with soft-serve frozen yogurt locations or restaurants that have the 140 choice, pick your own flavor, drink stations. The yogurt may be listed as gluten free and the drink that you pick may not have any malt flavoring but since the dispensing line used is the same as the other “unsafe” options, it can be problematic.
UK Celiac Mom: Ordering a roast dinner in a pub which advertised gluten free roasts only to be told the gravy wasn't gluten free - my daughter was not happy. Ordering a gluten free pizza at pizza hut only to be told after a half hour wait they had none in stock and could only offer me salad - I had just eaten salad as my starter!
Celiac Baby: Fortunately, we’ve only had a few bad experiences, and they were caught before my son ate anything because of the questions I asked the staff. For example, one restaurant claimed the fries were gluten free, but then a staff member admitted that they were prepared in a fryer used to cook items that were not gluten free. The worst experience we had was at a chain restaurant with a separate gluten free menu, except that none of the staff was aware of it (although it was in the menu book) and no one could answer any of my questions.
Have you had any good experiences eating out at restaurants?
20-something: Yes, plenty! I've had many chefs come out and explain the exact procedure they were going to use to prepare my meal. As long as your patient, I've never had a restaurant be rude when I ask 10,000 questions. And, while I've heard a few horror stories, I've had very good experiences at both Disney World (FL) and Vail Resorts (CO). But you still need to read blogs to determine the most allergy-friendly restaurants, make phone calls, and advocate for yourself in each restaurant.
Celiac Teen Dad: We’ve had several great experiences. These range from gluten free items being provided on dedicated serving plates so that the kitchen avoids cross-contamination to going to a restaurant and being handed a gluten free menu that has as many offerings as the “normal” menu. Many places are very understanding of Celiac Disease and often go above and beyond to make sure that Cam is safe when eating there. These are the places that get my return business.
UK Celiac Mom: The last 5 years have seen an increase in places offering gluten free options on their menu. We even have one place locally who even have gluten free profiteroles (cream puffs) available! It is expensive to eat there but worth it when we do.
Celiac Baby: I’ve had so many great experiences. Most restaurant staff have gone out of their way to take care of my son. There are a few places we return to again and again because the service is great and the food is safe. We’ve even had cooks prepare something not on the menu just for my son.
Anything else you’d like to say about eating out at restaurants?
20-something: The key is to be confident (but not rude), and do your research ahead of time! Also, if you're single like me, there are plenty of date ideas that avoid restaurants (and beer). Since everything seems to come back to food, pick an outing/activity that is near a smoothie shop or popcorn stand where you know you can grab something small if you want. Or if you are choosing to eat out, suggest a restaurant where you feel comfortable eating. But don't hide your celiac disease for too long because it's part of what makes you awesome too!
Celiac Teen Dad: One of our family mottos, as I stated before, is that we are not going to let Celiac control what our entire family does. Yes, we have had to make huge changes in our lifestyle and, yes, Cam’s health is of the utmost importance to us. But before his diagnosis, we enjoyed eating out at restaurants. It was a family treat going out once or twice a week. We are not going to let Celiac Disease scare us away from something that we enjoy. Does it require more work? Absolutely. Is it worth it to have him gain confidence eating out while continuing to make life memories? You bet.
Celiac Baby: While the potential for disaster is certainly there, I think that most restaurants want to keep their patrons happy and safe. Be polite, explain the food restrictions in simple language, ask questions, and treat the restaurant staff as though they are partners in keeping you or your loved one safe. However, if it doesn’t feel right or you’re not convinced they get it, don’t be afraid to leave without ordering. Better safe than sorry!