Suzanne became a baking queen as her four children were diagnosed with food allergies, EOE and EGE. She shares 8 lessons and 5 tips learned along the way.
Suzanne Earl: Look for the Sugar
Suzanne Earl has been married for 19 years and has four children ages 17 to three. She has lived in Utah, Wyoming, Texas, and is now back in Utah again. All of her children have severe food allergies and eosinophilic esophagitis (EOE) or eosinophilic gastroenteritis (EGE). These challenges sparked a need and eventual joy for baking and cooking in her home. She also loves to work in her garden.
On a personal note, Suzanne and I met when our families lived in Texas. When I found out that I did not tolerate wheat very well, she taught me how to make a gluten-free mixture before it became a thing that you could buy at the store. Suzanne is a baking queen. She knows the science of baking. She’s had to learn this because of her children.
An interesting fact about her is that she and her family were on the show Random Acts and had a Bake Off with the Random Acts crew, which they won!
Being on Random Acts TV Show
Suzanne’s oldest daughter Christine went online and nominated her little sister Brooklyn to be a Random Acts recipient because she knew how much her family loves baking shows.
Suzanne reads lots of cookbooks and watches baking shows like she’s taking a college class. She pays close attention to all the science and every little thing that they do so that she can learn new ways to do things. They even like to quote their favorite baking shows.
Sadly, they knew that baking and things like that weren’t something that Brooklyn could ever really do because she’s allergic to too many common ingredients. Imagine their surprise when Random Acts called and said they would like to have Brooklyn on their show and do some sort of baking show!
Suzanne provided most of the ingredients from home to make sure they were safe. The staff of the show built a kitchen to ensure Brooklyn would have a safe place to bake. Suzanne says it was a great experience for their family.
If you would like to watch their family’s episode on the Random Act’s TV show click here (and start at the 5:00 minute mark).
It wasn’t easy for Suzanne to get her family established though. After getting married and trying to have children, Suzanne learned that she has polycystic ovarian syndrome, but was asymptomatic.
She had to take a lot of medications to even get her body to ovulate. It took a few years to get her first two girls here, between medications and working closely with her doctors.
A few years later, Cristine was completely surprised to find out she was 15 weeks pregnant with her son. Miraculously they got pregnant on their own with him. He was born at 35 weeks, so it was a short pregnancy for Suzanne.
They knew they wanted to have one more child after their son, but their doctors wouldn’t give them anymore fertility medications.
After a move they continued looking for a doctor who would help them.
It took ten years until they were finally able to get pregnant again with twins. Unfortunately, they lost one of the twins at 12 weeks. Suzanne then had to take a lot of medications and be on bedrest to save the other twin. She was born and now they have their beautiful four children.
Struggles with Allergies
However, the struggles didn’t end there. They struggled to get their babies here, but once they arrived, they struggled to feed them.
It all started with Christine and her food allergies. She struggled a lot as a baby and they didn’t really know why. Then, when she was 15 months old, she ate part of a granola bar that someone had left on the coffee table and broke out into hives all over her body. They learned she was allergic to peanuts, and the number of allergies continued to grow from there.
Many kids grow out of their allergies as they get older, but not Christine. Suzanne had to learn to cook without using egg, dairy, soy, corn, or oats. It turns out there are very few things you can buy for a toddler without those ingredients.
Suzanne felt like she was getting into the swing of things once her second daughter, Brooklyn, was born. Around the age of two, Brooklyn suddenly started losing weight, throwing up, and crying all the time.
They took her to the allergist to rule out food allergies but they couldn’t find anything that she was definitely allergic to.
Suzanne remembers one particular day when they were at her parent’s house having a barbecue. Brooklyn ran up and touched the grill and burned her hands very badly but she didn’t even cry. Suzanne thought, “She must be hurting so badly on the inside that she doesn’t even notice her hands. She’s hurting all the time.”
EOE and EGE
They continued to search for doctors who could figure out what was wrong. Finally, a friend suggested they look into eosinophilic esophagitis (EOE). An allergist ran a blood test that showed she did have very high levels of eosinophils.
Eosinophils indicate inflammation in the body. They then went to another doctor at Texas Children’s Hospital. Suzanne remembers him being one of the first doctors to really listen to them. They performed an endoscopy and found eosinophilic esophagitis (EOE) and eosinophilic gastroenteritis (EGE). This meant that there were eosinophils in her esophagus and stomach causing inflammation.
Eosinophils are white blood cells that are supposed to fight parasites and viruses. But sometimes they start to attack the food you’re eating, thinking that the food is attacking your body. They gather together and cause inflammation and pain. If they reach the surface, granulation occurs and releases toxins that can make you very sick.
After receiving this diagnosis, Suzanne and her husband decided to put Brooklyn on a G tube. A G tube is a feeding tube that goes straight into your stomach.
They had to give her a special formula called Neocate that is free of all food proteins that she could react to. Because of this, the formula tastes and smells awful, which is why it’s better to be administered through a G tube rather than drinking it.
Suzanne says it was a night and day difference. Their daughter became the happiest, sweetest four year old little girl when they took regular food out of her diet.
Beyond Brooklyn’s EOE, EGE, and food allergies, Christine has food allergies and EOE, and their son is allergic to salicylates. There are synthetic versions of salicylates in things like ibuprofen and aspirin, but there are also naturally occurring salicylates in a lot of healthy foods.
Their youngest daughter is only three and already cannot eat wheat, dairy, potatoes, carrots, or apples. They aren’t sure why.
Diets, Allergies and Normal Life
Having a special diet can be really difficult, especially for young children. So much of what we do socially involves food. Brooklyn was in kindergarten when she got her feeding tube. And then, Brooklyn started to develop food allergies on top of the EOE and EGE.
At home, it was easy to invoke a sense of normalcy, and explain to the kids that this was Christine’s food, this was Brooklyn’s food, this is mom and dad’s food, and “no one shares because we all have to eat differently.” But at school, there’s a cafeteria and kids are sharing and there are class parties and birthday treats.
Brooklyn couldn’t participate in a lot of these experiences. She began to notice she was different, and so Suzanne had to figure out how to begin teaching her daughter from a different perspective.
New Food Trials
It has taken ten years, but in April of 2019 Brooklyn finally was able to have her feeding tube removed. She has had over 30 endoscopies while trying to determine what foods she can eat. They are still in the process of trying new foods to make sure she can safely eat them.
It takes about six months to determine if she can eat three new foods. They do skin tests for allergies for each new food first before she eats them. They do a blood and skin test first, then a patch test where the food is on a patch on her back for 48 hours. They then look at her skin to see if they can see redness or bumps where the eosinophils are moving outward under her skin. If they can see any signs of reaction, they don’t even try to eat that food.
If she passes those tests, she eats the food and then they do an endoscopy with biopsies to see how her body is reacting. After a month of trying the first food, they would move on to the next one. If she had a reaction to a food, it would take about a month before her body had recovered and she was no longer reacting to it.
After about six months, they can add the new foods to their “safe” list. Brooklyn can now eat 22 foods, including items like sugar, salt, and baking soda. She just recently passed nutmeg but not cinnamon. There are 83 foods that she definitely can’t eat.
Eating As a Family… Sort Of
One meal that their family likes to eat together is spaghetti. They have two sets of utensils for cooking: two pots, two colanders, two stirring utensils, etc. One set is for regular noodles, one set is for rice noodles, which Brooklyn and the youngest can eat. They all could eat rice noodles, but that’s a lot more expensive.
First, they make a big batch of plain hamburger. Then there are two sauces: one with spices, one that is just tomato and salt. There’s cheese available for those who can have cheese (not everyone can).
Suzanne explains that there’s a lot of dishes to do after their meals. Often, Suzanne will make big batches of different foods that individuals can eat and if she is making something that one of the kids can’t eat then they can get something from the fridge or freezer that she has prepared ahead of time.
Lesson #1 We All Have Trials
Suzanne had to start teaching her kids that everyone has their own trials. She told them that just because their friends could eat something they couldn’t, didn’t mean they didn’t have hard things too.
They would discuss their cousin with cystic fibrosis, a friend with cancer, or a friend who is missing a foot. “Yes,” Suzanne would explain, “You don’t have food allergies, but you have two feet.” Pointing out these differences helped them to develop empathy towards others.
Suzanne has been able to make a children’s book, “The Climb,” teaching this same concept that we all have different trials. “The Climb” will be released toward the end of 2020. Suzanne explains, “Not only do our trials make us human, but they make us normal.”
Lesson #2 Keep Things In Perspective
All of these dietary and allergies took a toll on Suzanne. But she says she felt lucky that they weren’t all thrust on her at once. Each new allergy came one at a time. She does remember when Brooklyn was first diagnosed and couldn’t eat any food Suzanne remembers crying. She had no idea how to go forward.
Brooklyn didn’t have her feeding tube yet, they had just sent them home with this horrible formula sample. She couldn’t imagine making her daughter drink it. They decided to do the feeding tube, and they had no idea how long that was going to last.
Suzanne remembers praying and searching for answers. After her prayer it became clear to Suzanne that the feeding tube was going to be temporary. Before that moment of clarity from God, it had seemed like a long term and overwhelming thing, but she remembers feeling that they would be able to find foods she could eat. Suzanne just needed to look at the bigger picture.
Looking at the bigger picture allowed Suzanne to hope. She recognized that she was on a big, long journey, and this was just one more step forward.
Lesson #3 Our Trials Make Us Unique and Normal
Suzanne’s kids have learned that just because they can’t eat the same foods as other people, it doesn’t make them different. Once when she was getting changed for PE, a girl pointed at Brooklyn’s feeding tube and said, “What is that?” Instead of getting embarrassed, Brooklyn lifted up her pants and said, “These are pants.” It didn’t even occur to her that she was any different than anyone else. She was just wondering why the other girl was looking at her pants.
Suzanne has tried to help her children understand that people are all different and that’s ok.
Lesson #4 Look for the Sugar
The saying goes, “When life gives you lemons, make lemonade.” But in Suzanne’s family, they learned that you can’t make lemonade without sugar. Finding the sugar after a bitter situation presents itself has become a family quest. Suzanne has asked her children to “look around and find the sugar in your life.” Do you have a helper? A friend? A parent? A teacher? Those people are all “sugars” that help us turn our lemons into lemonade.
For Suzanne, the sugar often looks like being able to help others cope or learn more about a diagnosis of EOE or food allergies. They have been able to talk to others who might need a feeding tube.
Even though Brooklyn’s condition is very rare, her kindergarten teacher’s daughter also had EOE and had a feeding tube. Suzanne had been very nervous about sending her to school. But Brooklyn’s kindergarten teacher came to their home and helped them learn about Brooklyn’s feeding tube and how to change it, because she had experienced the same thing.
She told them what things she would do in class to help make Brooklyn more comfortable. After spending so much time looking for “sugar,” Suzanne doesn’t believe in coincidence. She believes in divine design.
Lesson #5 We Are Not Alone
Suzanne was surprised to find how many people she could connect to once they started talking about their trials. So many people would say that they knew someone with the same allergy, or that they themselves had experienced it.
Often when a diagnosis hit you feel alone–like you are drowning (as Suzanne’s sister explains it). You feel like you’re drowning in all of the hard things you are going through. The cool thing is when someone comes up to you and says that they know how you feel, it’s like coming up for air. Suddenly you don’t feel like you have to explain everything to everyone today. You don’t have to explain why you can’t share your food or come to a party.
Sometimes it might not even be the same trial, but hearing someone say that they understand can be a lifeline.
Lesson #6 It’s Okay to Cry
Suzanne’s sister’s son was diagnosed with EOE and food allergies too. The first thing she did was call Suzanne, crying. She told Suzanne that she didn’t know what she would do if she didn’t have her to talk to.
Suzanne emphasizes that her sister didn’t want her to tell her that everything would be ok or to solve the problem. She just wanted to talk. She needed someone to listen and cry with. Suzanne says that as moms we often grin and bear it through our trials, especially for our kids. But it’s ok to have our kids come and cry with us. It’s ok to feel those emotions. Go ahead and cry!
Part of being human is knowing that you don’t have to be strong all the time. It’s not even realistic to be strong all the time.
Lesson #7 Pray for Answers and Inspiration
One last tip that Suzanne would like to share is don’t forget to pray. Ask for help.
A lot of Suzanne’s ideas for problem solving food or other life challenges come when she is asleep, after she has said a prayer. Suzanne explained that saying regular prayers has made a big difference in her life. She has found answers and solutions to the challenges that have come her way.
A lot of times we like to say that God won’t give us anything we can’t handle. That’s not true. He just won’t give us anything we can’t handle with His help. We need strength from His help to get through. We were sent here to learn and grow, but never to do it alone.
Lesson #8 Listen to Your Heart Songs
Suzanne remembers when Cristine had an extremely bad allergic reaction and ended up in the emergency room. Suzanne was not allowed in the room at the time because she was eight months pregnant. She had to watch from outside as they administered epi pens and x-rays and all sorts of other treatments.
Later, she listened to the song “Breath of Heaven.” The song spoke to Suzanne’s spirit. Music has a way of saying things that words can’t. There’s a difference between someone telling you that everything will be ok, and actually feeling that deep within your heart through music. When you find a song that speaks to your heart, you call it a “heart song.”
This is a list of Suzanne’s heart songs:
- Breath of Heaven by Amy Grant
- The Climb by Miley Cyrus
- Daughter of a King by Jenny Phillips
- Roots before Branches by Room for Two
- Somewhere over the Rainbow by IZ
- The Woman I was Before by Emily Castleton
- Lemonade by Alex Boye
- In the Meantime by Jenny Frogley
Tips For Others With Food Allergies
Tip #1: Research Everything
Suzanne says that one of the most important things for her to do when making something for her family is to look it up. She has a huge shelf of cookbooks that she can’t get rid of. She spends a lot of time thumbing through them, trying to come up with new meals for her family.
Just recently she was trying to come up with a potato salad recipe but couldn’t think of anything. She turned to her cookbooks and found one that uses vinaigrette instead of mayonnaise and it was a lightbulb moment. She couldn’t use all of the ingredients in that recipe, but it got the juices flowing enough that she could come up with something.
Suzanne also gets a lot of ideas from cooking shows, especially ones like Good Eats with Alton Brown, where they delve into the science of why things work. She says that if you understand why the recipe is working the way that it is, that can help you recreate it in a different way that works for you. She says Youtube is also a great resource for looking things up.
Suzanne’s favorite cookbooks are “The New Best Recipe” by America’s Test Kitchen and “The New Best Light Recipes” By America’s Test Kitchen.
Tip #2: Be Creative
Suzanne says that there are lots of ways to be creative with cooking, even with limited ingredients. For a while, rice was one of the only ingredients Brooklyn could have. So they found ways to incorporate different versions of rice:
- Rice vinegar
- Rice flour
- Rice syrup
- Brown rice
- Long grain rice
- Berea rice
- Basmati rice
Even though she was still eating mostly rice, Brooklyn felt like it was fun, creative, and she could try different things. They even made pancakes cooked with rice flour, sugar, baking soda, and rice vinegar. Sure, it didn’t taste like you would expect a pancake to, but it was something new.
Suzanne also tried to get really creative so that her kids could have “normal” experiences, like birthday cake. They made slices of cake out of little boxes that, when put together, formed a big cake. Inside the boxes were small, non-food prizes.
Tip #3: Learn to Navigate Eating Out
Eating out carries a lot of risk for a family with as many allergies as Suzanne. It’s difficult to explain all of the allergies to a chef or cook and why you really can’t eat certain things. For Suzanne, it’s also difficult to give up the control as her children get older. They want to be self sufficient and go out with friends.
Her oldest daughter was excited to go to Homecoming. For Suzanne, that meant finding a dress with pockets for an epi pen. As her kids have gotten older, their family has tried to reach out to more restaurants and establish what things they can do.
They’ve tried to teach their kids how to navigate a world that does things differently than what Suzanne has done for them.
Tip #4: Foster Independence
Teaching them independence has been a long road. Suzanne often gets asked what she’s going to do when they go to college. She usually responds, “I don’t know, what should I do when they go to college?”
This year, Suzanne has tried to let her kids be their own advocates. Suzanne didn’t do the training with their teachers this year. The girls explained their situation to their teachers on their own. It was difficult for Suzanne, but a very important lesson for the girls to learn, while still having Suzanne to fall back on if needed.
Tip #5: Invite People Over
Most parents were a little nervous about inviting Suzanne’s kids over for playdates or parties because they didn’t’ know what to feed them. This can feel very overwhelming for someone who isn’t used to it.
So Suzanne would have her children invite people over to their home. She taught her kids to adjust things a little bit so that we can still have a good time with friends. Brooklyn often invites people over to cook. They can still do something fun with food together, but it’s a safe environment for her.
Suzanne says there are lots of Facebook groups that will connect you to others with a diagnosis like EOE or EGE or other food allergies. These groups are full of people who know how you’re feeling and they also have lots of resources about doctors or formulas or ingredients.
There are even groups for EOE and EGE. Groups are a great resource because there are so many ways to treat EOE and EGE. By listening to the experiences of so many others, you might be able to find a treatment to discuss with your doctor that could work better for your family.
Suzanne explains these groups are also great for those with food allergies because sometimes members of the group will find a food that has been labeled incorrectly and can warn others.
Suzanne has a page on Facebook called Utah Kids Allergy Cooking Class. There are some videos there and you are also welcome to ask questions and gather ideas. She has another page on Facebook called The Bread Lady. Because her kids can’t eat bread from the store, Suzanne had to learn to make bread and she got pretty good at it. She makes and sells her bread through that page, and also shares recipes and tips. Suzanne doesn’t have a gluten-free bread, but she does have gluten-free muffins, pancakes, and cookies.