Last weekend I went on a girls’ trip to Madison, WI with my daughters and my mom. As you can imagine, I was a little concerned about trying to navigate eating while there with Asa’s multiple food allergies in combination with my Celiac Disease. Avoiding milk, egg, peanuts, tree nuts, and gluten isn’t exactly an easy task! I posted in some food allergy groups I’m in on Facebook looking for recommendations for our travels and some people definitely delivered! I also had several people tell me that Madison was a great city for food allergies and let me tell you… they were right!
The first day we got there, we went to a restaurant called Ollie’s based off of a recommendation. It was such an awesome place! Looking at their website immediately made me feel comfortable. They talk about food allergies on their home page which is always a great sign. When you walk in the door, they offer fidgets and sensory items to take to your table. They also provide noise cancelling headphones if you need them! They had a vegan menu and a regular menu and their menus clearly labeled gluten free items as well. The waitress was great and went to the back to talk to the chef about Asa’s allergies to ensure what we wanted to order would be safe for her. The kids were excited because they even had MARKERS instead of crayons for the kids menus. This was their dream come true! I was able to eat cheese curds (a Wisconsin staple) that were gluten free and they were delicious! We had no reactions and everything was super yummy!
That night we went to an ice cream shop that was recommended by multiple people – The Chocolate Shoppe. This ended up being Asa’s favorite part of the whole trip. She’s never ordered “ice cream” from a restaurant before. We’ve always been nervous to and not many places have safe options for her. But since multiple people recommended them, we decided to try. Their website also made me feel better about their awareness of allergens. She got the Strawberry Hibiscus Italian Ice and LOVED IT! She could not stop talking about how she got ice cream from a shop. It was the first thing she told her dad on the phone! They also had great gluten free choices for me!
The next day we hit multiple stops! We went to Yola’s Cafe for breakfast. We had to wait quite a while because it was a Saturday morning and they were busy, but it was really good! They had amazing, fluffy gluten free waffles and were able to make bacon in their separate fryer just for Asa!
For dinner that day, we went to bartaco which ended up being the best meal we had the whole time – so good in fact that we went back again the next day before leaving town! I picked the restaurant based solely on the fact that they were rated high on the Find Me Gluten Free App and was planning on Asa eating food we brought for her. When we got there, I asked the waitress about the menu and found that there were only a few items that weren’t gluten free! Yay for me! I then told her that I was sure Asa probably couldn’t eat there and we brought her food. She asked what her allergies were so I told her. She then uttered a statement that I’ve never had any server say to me before… she said, “Oh! That’s really not that hard!” And then she proceeded to tell me all of the things on the kids menu that she could eat! I was stunned. I’ve never had anyone tell me that her allergies weren’t that hard. The waitress has no idea what she did for me that night! She made me feel so calm and comfortable. Asa was able to eat chicken, corn wheels, and a fruit kabob. She scarfed it so fast and was so excited to come back the next day for more! If only every restaurant experience could be like our experience at bartaco!
My delicious gluten free tacos!
Overall, our experience eating out in Madison, WI with food allergies far exceeded my expectations! I packed a ton of food that we didn’t even have to touch because of how much Asa got to eat out. I had to come home feeling jealous of our experience in Madison! I hope this blog helps other travelers!
I just need to take a minute to acknowledge how much it means to an allergy parent when other parents take the time and energy to go out of their way to make my child feel included.
If you’re an allergy parent, you will immediately know what I mean. And if you’re not an allergy parent, I hope you take a couple minutes to read this to understand how just a couple small gestures can mean the absolute world to someone.
We have been incredibly fortunate to be surrounded by some amazing families so far in Asa’s life. Her friends at school have been awesome with her allergies. I’m sure a lot of this is due to the wonderful teachers that she has had and the way that they educate the kids in her class about her allergies. But it is also due to the kids’ amazing parents. This has been evident by how many parents have taken the time to reach out to me personally when planning birthday parties, in-class treats, and in-class parties to make sure that Asa has safe snacks and treats so that she isn’t left out. We are used to bringing our own goodies to birthday parties and keeping safe treats at school for her. It’s just part of her life. But parents making her feel included not only means the world to us, it means the world to HER.
Today we went to a birthday party where the mom reached out several times ahead of the party to make sure they had safe treats in lieu of cupcakes for Asa. It was adorable because the birthday kids (they are twins) were both so excited to come show Asa the snacks they got her and Asa was beaming. One kid that didn’t know Asa asked why she had a tub of icing sitting at her spot of the table and the birthday girl said, “Because Asa has allergies and the cupcakes aren’t safe for her! So we got her something that is!” The pride on Asa’s face was so evident. Her friends had her back.
I can’t overstate these moments. As a parent, there is nothing better than watching my kid’s friends stick up for her and keep her safe. And as a mom, nothing means more than other parents going the extra mile to make my daughter feel included. They spent extra money on her today just to do that. And it doesn’t go unnoticed by me. Those are moments I don’t forget. And this wasn’t the first time. Other parents have told me that their kid begged to have an “Asa-safe” cake or told them to make sure to buy Skittles because Asa loves them.
These little acts of kindness mean more than these parents and kids will ever know. So if you are ever faced with an opportunity to do one, I really encourage you to think of a way to include those that are probably left out a lot. They won’t forget it! ❤️
Asa with her tub of icing, Skittles, and Starburts 😍
Asa is now 5 1/2 years old. A few months ago, I was in the car with her and I was running to pick up some dinner for me while my husband was in our other car running to get food for him and the other kids (that’s life with Celiac Disease for you…). From the backseat, Asa said, “Mom, can we please stop and get some food for me too?” Thinking she meant something from the grocery store I said, “No, we already have food for you at home.” She replied, “No, Mom. Can we please stop at a restaurant and get something for me? I don’t even care what it is. I’ll eat anything. I just want to get something from a restaurant like the rest of you.”
My heart broke. It was the first time that she was really expressing that she felt left out. She went on to tell me that every time we bring food home like this, the rest of us have our food from eating out and she just has food from home and she hates just watching us eat our special food. She said she just wants to be included.
We’ve spent close to 6 years protecting her from restaurants. We’ve packed safe meals every time we’ve gone out. We’ve avoided meals out just to keep her safe. We’ve cooked elaborate meals at home and ordered special ingredients just to make sure we had all the safe foods we needed right in our four walls. I’ve dreaded navigating menus. I’ve shed tears thinking about ordering from a restaurant and trusting them with her allergies. I’ve conjured up images of giving the epipen in the middle of the restaurant because an allergic reaction happened. To say I’m scared is an understatement.
But I also know I need to prepare her. I need to help set her up for the real world. I need to teach her how to navigate restaurants, menus, wait staff, and chefs. I need to help her have confidence using her voice in these situations. I have to be her example. I have to show her how to live with caution but not fear. Anxiety is a real side effect of life with food allergies. And I don’t want her to be paralyzed by it as she grows up.
So we started researching places to go. I started reading menus online, going to local allergy groups I’m in on Facebook, and calling places. I started using MY voice more and slowly but surely I started feeling more confident in letting her eat out at a few different places!
I wanted to share a few of those in hopes that they help others if in no other way than to help you know that it’s possible to navigate eating out, even with multiple food allergies! As a reminder, Asa is allergic to milk, egg, peanut, and some tree nuts.
One of National places that we found was Chick-fil-a. They have a great allergy menu online which makes it easy to plan before you go. (I linked their allergy menu above!) They have a separate fryer for their fries so they stay gluten free (yay!) and their grilled chicken is a great option for those with egg, milk, wheat, gluten, and nut allergies! Their kids meals also have options of fruit or applesauce as alternatives to fries. Asa and I have both eaten there safely multiple times now!
Another great regional restaurant we’ve come to love is Hawaiian Bros. (Their allergen menu is linked above!) Almost their entire menu is dairy, egg, and gluten free. They are also VERY allergy conscious. The best part – they serve Dole Whip as dessert! If you have allergies, you probably know what a treasure Dole Whip is! And if you don’t, find your local place with Dole Whip and get some pronto! For the record, Asa’s favorite food at Hawaiian Bros is the Luau Pig so try it if you go.
Our list is slowly growing and we’ve found some great local spots too. I’ll share more as I find them! Feel free to share yours too!
Asa starting preschool this past Monday. (It’s Friday night as I’m writing this.) I have so many things to write about but I’ve honestly been putting it off because I’m a little overwhelmed and exhausted by it all.
We knew this day was coming. She turned 3 in December and the plan was to enroll her then. With COVID, we decided to delay that start date a little. We finally felt it was the right time to send her, but our nerves on the allergy front haven’t lessened at all. How could they, really? This is the first time that she has ever really been with anyone other than our parents. We have left her in church Sunday school before, and honestly, even that brings me anxiety! But this is a whole new ballgame. Dropping her off, out of our sight, with complete strangers, knowing that we can’t be there to watch her every move is completely terrifying. It’s unlike anything I can even explain. If you have children, you know the anxieties that come with the first day of school. Now take those anxieties and amplify them by 100. Maybe that can help give you a little taste of what I was feeling leading up to Monday.
We tried to be extremely prepared. We contacted the school months ago and I met with the principal to talk about our concerns. (Reminder that Asa has 3 major food allergies – milk, egg, and peanut.) That led to a conversation with the school nurse to develop an individualized health plan to go over what to do in case of an emergency. We agreed that Asa’s EpiPen would stay in her backpack with her in the classroom at all times so that it would be readily available in case it was needed. We agreed that 911 as well as my husband and I would be called immediately if they even suspected she had been in contact with an allergen. We went over the snack list and agreed that we could send in our own snacks from home just to control exactly what she could have. She would be given soy milk instead of normal milk in the classroom. We sent over her allergy plan from her allergist. I even took time to label her EpiPen cases clearly with her allergens. We felt as prepared as we possibly could be, but the anxiety and fear was still there.
I bought her EpiPen cases from PracMedic and labeled them with her allergies myself using vinyl and my Cricut 🙂
Monday came and Asa was SO excited to start school. She had been wearing her backpack around the house for at least a week and was so excited that she was going to school just like her big sissy. She couldn’t wait to use her new water bottle and go meet her new teacher. She was excited and filled with hope. We were excited but also filled with fear. I tried to occupy my brain by making her a shirt for her first day. She wore it proudly and looked adorable when we dropped her off for her first day.
Our big girl on her first day!
After dropping her off with tears in our eyes, my husband and I both started saying that we still felt slightly unsettled. While developing her health plan with the school we had asked about having all of the kids hands/mouths washed or wiped down after snack time to ensure that no allergens were left on them after they ate and drank. We were told that wasn’t really feasible. It wasn’t sitting well with us.
I posted on Facebook about Asa’s first day of school and asked for people to be praying for our anxieties and for her to be safe. A fellow allergy mom reached out to me and asked if we had a 504 in place. My response was basically, “A 50-what?” I had no idea what a 504 was. A 504 for food allergies is essentially a kind of written management plan that is very commonly used for several kind of disabilities or health conditions including food allergies. More information on them can be found here. She advised that we work on one immediately as they are legally binding and are more official than the individuated health plan we had already created (which was still a great first step).
I immediately started looking up information. I also posted in a local group on Facebook to try to find other food allergy parents in our school district who already had 504s for their children to see if they would share their experiences with me. I was in the luck! I had one of them immediately message me and then ask if she could call me. She talked to me like we had known each other for years. The food allergy community is amazing. Once you have a child with food allergies – you just get it. You understand the struggles, the fears, the constant worry, and you just empathize in a way that makes you want to help others. She told me that part of her child’s 504 includes his classmates washing their hands after they eat every single time. (That was funny since we were told that wasn’t feasible.) She armed me with a lot of great information.
I reached out to the principal, the school nurse, and Asa’s teacher immediately. We set up a meeting to discuss a 504 and talk about our concerns. In the meeting with them, I started by saying that I didn’t ask to have this meeting because I thought they were doing a horrible job. I was actually really impressed with the way our district handles food allergies and think that they are leaps and bounds above other school districts in this matter. I thanked them for their help so far. I then told them that they needed to understand that one small accident could lead to my child’s death. I explained that it’s hard for me to feel confident leaving Asa in anyone’s care when I don’t even fully trust myself. I have to double and triple check every single thing I give to her because I never know when I manufacturer that I trust is going to change their recipe or change their factory and make it unsafe for my daughter. I am constantly concerned that one little slip up could result in an anaphylactic reaction. I also explained that in her 3 years of life we have had to use an EpiPen 2 times. I said that the last thing that I wanted was for a teacher or a staff member to have to administer an EpiPen to her. It’s stressful and scary and I didn’t want them to have to go through that. I tried to be firm and blunt but understanding and caring in my delivery.
They were so incredibly helpful. When we brought up the hand washing this time, they didn’t bat an eye. In fact, they took it a step further and said that it may be better to just remove the allergens from the classroom altogether. (YES, PLEASE!) They are writing up her 504 right now and we will have it completed in the next couple of weeks. With the 504, it will follow her throughout the district as she moves up in grades but will be adjusted every year based on her needs, so we will have these meetings yearly.
I wanted to write all of this out because I thought it was important information for others to have. I know that we are all in various stages of our food allergy journeys. Maybe you aren’t even a food allergy parent, but you are reading this to be informed, and if you are – thank you! Seriously, from the bottom of my heart, thank you. When I posted in the Facebook group asking for allergy parents who have made a 504, I had several people comment telling me “504s aren’t for allergies” or “just talk to a principal”. Many people were immediately dismissive of me for absolutely no reason. It was incredibly disheartening. Along with that, I had a lot of allergy parents come to my defense and offer their support and help. I hope that this blog if one of those resources to those of you fighting this fight. I know the fears you face every day because I face them too.
I have still been spending this week thinking of even more ways to keep Asa safer. I added more visuals to her backpack to remind people of her allergies.
Got these lanyards (left) from Target awhile back so I turned it into a tag for her backpack! I have extras so if you want one – hit me up and I’ll send one to you! The little EpiPen clips (right) were purchased from Amazon here.
I don’t think that will ever stop. I’ll probably always be innovating new ways to make her allergies more known so that she is safer at school. For now though, she made it through week 1 and I feel more empowered after advocating for her and using my voice to speak up! I’m also super thankful to the food allergy mom who called me even when she didn’t know me because she encouraged me to do just that! (Shoutout Kristin!) And special thanks to Sarah who is always a huge support for me and messaged me about the 504 in the first place!! You’re a rockstar!! If you have questions about anything I mentioned in this blog, please don’t hesitate to reach out! Or if you just want to vent or talk, I’m here for that too.
This week has brought some very disheartening, frustrating, and honestly scary news for the food allergy community.
This past weekend, the FDA issued new guidance that loosens up the labeling requirements for non-top 8 food allergens due to COVID-19. This guidance came as a shock to everyone in the food allergy community – including Food Allergy Research & Education (or FARE). The new guidance does not effect rules with the top 8 allergens, but it does create problems for millions of food allergy families who are constantly searching for safe foods.
The FDA lists that the goal of the new guidance, “is to provide regulatory flexibility, where fitting, to help minimize the impact of supply chain disruptions associated with the current COVID-19 pandemic on product availability.” And while this makes sense on one-hand, it also means that families that rely on very clear and strong labeling laws are now at risk. The FDA guidance goes on to say, “For example, we are providing flexibility for manufacturers to use existing labels, without making otherwise required changes, when making minor formula adjustments due to unforeseen shortages or supply chain disruptions brought about by the COVID-19 pandemic.”
The FDA does it make it clear that the top 8 allergens (along with a handful of others – sesame, celery, and mustard to name a few), may not be substituted without clear labeling. It does not, however, include rules for dozens of other ingredients that can cause anaphylactic reactions in people with food allergies. Keeping the guidelines the way they were would cost the food companies a headache along with some money. But changing these guidelines like they did could cost someone with a food allergy their life.
How is it the entire country/world has entered and accepted this current pandemic and taken drastic measures to prevent the spread of it, but yet there is a pandemic, if you will, around food allergies… that has not received near the attention it should? This is a life or death situation daily, and for their entire lives, for these individuals… and now the audacity of the FDA to lessen the required labeling is sickening and appalling.
– Katie Fraunholtz – fellow food allergy mom
All of this is on top of the stress and fear that many food allergy families are facing right now due to limited food supplies from COVID-19. Because grocery stores are selling out of “normal” items, many people are turning to allergy-friendly alternatives instead. This limits the availability of those allergy-friendly foods for those that NEED them. I know in our family, we have had to go to a handful of stores in one trip to find the allergy-friendly essentials we need to feed our daughter. Now with this, options could be even more limited (or non-existent) for those whose allergies are outside of the ingredients listed in the new FDA guidance.
Many organizations, food allergy families, and food allergy allies are looking for ways to stop this new guidance. FARE has asked that food allergy families join in the fight to ask the FDA to re-think these new guidelines. A simple way to do so is by filling out a short form at regulations.gov and putting your concerns in the “Comment” box. Be sure to include your name and hit “submit” when finished.
We need to send a strong message to the FDA, and by taking action today, you can be a voice for the 32 million Americans who depend on strong labeling laws to protect their health and safety.
– Food Allergy Research & Education
I beg you to please take the time to fill this out! If there has ever been a time to stand up for those with food allergies, it’s now.
Food Allergies Mom 