Hi Hi! Kathlena, The Allergy Chef, here and today I’m going to be sharing awesome resources and practical tips with you to use if your baby or toddler has been diagnosed with a food allergy. I personally have more than 200 food allergies and intolerances, and one of my kids was born with food allergies. The other three kids all required special diets based on intolerance or medical condition, so when I tell you I’ve walked a mile (or ten) in your shoes, I really truly have.
I’ll be sharing both my professional and personal experiences with you to help save you some of the initial struggles people have when their child is newly diagnosed.
Understanding Common Definitions
Before we go any further, I want to highlight some terms you might hear at some point on your journey and dig a little deeper into what they mean.
Food Allergy: In simple terms, a food allergy is an abnormal immune response to food. It’s important to remember that no two people are the same, and can respond differently to the same food (in the same amount). Whilst there are hundreds of different allergic reactions, the one most people are familiar with is anaphylaxis, which is a life-threatening response.
Food allergies have not been studied as extensively as other medical conditions. However, the diagnosis rate is on the rise. Whilst there’s debate as to the cause, it’s becoming clear that there are several ways people can develop food allergies (outside of being born with them). Medically speaking, a unique feature of food allergies is that they can be outgrown, as well as developed at any age.
With a “simple and true straightforward food allergy with quick and obvious reactions” the diagnosis is fairly quick and the treatment is to avoid the trigger food(s). In other cases, we refer to them as complex as they can be harder to diagnosis, have non-traditional symptoms, or have underlying conditions.
With a traditional/straightforward allergy, it’s IgE (the allergy antibodies that cause the reaction) mediated and the onset of reaction is usually immediate to 4 hours. The class/numbers on your test results cannot predict the severity of a reaction. In some people, continued exposure to a known allergen can elicit a more severe response each time. It is one of the many reasons why strict avoidance of known allergens is critical.
Food Intolerance: An abnormal reaction to food that’s not life-threatening. The key difference between an allergy and an intolerance is an allergy has the potential to cause anaphylaxis. Another difference is that an intolerance can cause health issues for up to 28 days in some people.
It’s not uncommon for a food intolerance to have a delayed onset of more than 4 hours. Additionally, a food intolerance is not IgE mediated, however, can create symptoms in all parts of the body.
There's a lot of controversy surrounding the accuracy of testing for a food intolerance, and that can make the trigger food harder to pinpoint. In many cases, the most helpful diagnostic tool is a highly detailed food journal.
Celiac Disease: An autoimmune disease where the body will attack itself when gluten is consumed. Over time, this can lead to many negative health complications. There are more than 200 Celiac Disease symptoms, and the combination of symptoms are unique to each person.
It’s important to note that with both a wheat allergy and Celiac Disease, no two people are the same. This means that exposure to the same amounts can cause a different reaction in those two people. With both a wheat allergy and Celiac Disease, the treatment is to not eat the trigger foods.
Contact Allergy: A contact reaction happens when you touch the trigger food. The food may be raw or cooked (no two people are the same). Here’s another example I can share with you: if you take a dab of milk and touch it to my second oldest child, that spot will turn bright red within a minute or so. The skin becomes irritated and takes quite a while to clear up. He is contact allergic to milk.
Here’s another example I can share with you: bell peppers. When I touch them, my fingers burn like they’re on fire. In some instances, it’s like having fingers that are plagued with frost bite but also very heavy. It’s hard to describe but it’s painful and I’d rather avoid it.
Airborne Allergy: I can tell you about an experience Kid Two had so you can better understand what an airborne allergy is like. He was part of a stage play and they served the cast pizza for dinner. He takes his own food everywhere he goes so he can eat with others. Upon arriving, he began to have an allergic reaction (throat issues, asthmatic issues, tongue issues). He had to leave the room. The overwhelming amount of steaming hot pizza in the room was too much for his system to handle.
In his case, there’s a threshold before the reaction happens. He’s been near small amounts of cooking dairy without having a reaction.
Delayed Reaction: Some people with an IgE mediated food allergy present with delayed reactions outside of the traditional 4 hour window. A delayed reaction can be just as severe as a quick reaction. There's no way to predict what kind of reaction(s) you'll experience.
No matter the speed or type of reactions you have, a food journal can help you track what's happening, and when. This is even more helpful if you're managing a child, or non-verbal person.
Build Up Reaction: A build up reaction is more common in those with complex cases, autoimmune disorders, food intolerance, MCAS, and other non-traditional cases.
It's easier to think of a build up reaction like a bucket. Each exposure is a drop in the bucket. For some people, the bucket is small (think 4 ounces) and in others, it's a decent size (think 4 cups). Once the bucket has filled, it overflows, and that's when the person experiences the reaction. What counts as a drop in the bucket will be unique to each case. It could be a food trigger, environmental trigger, or something else.
Some free-from people refer to this as the Bucket Theory, and they'll say something like "my bucket was full". Some find that the fuller the bucket, the more reactive they are to all of their known safe foods. Again, this often happens with those who are managing a complex case.
The Bucket Theory is also very prevalent in the corn free community, due to the wide usage of corn derivates in food, medicine, and agriculture.
Cow’s Milk Protein Allergy (CMPA): It’s important to know that a CMPA is one of the most common allergies currently diagnosed. An IgE mediated cow’s milk protein allergy will elicit an allergic response within 4 hours of consuming cow’s milk (in most cases). It’s not uncommon for the reaction to be immediate. In a delayed reaction, symptoms can occur from 4 hours – 1 week after consuming cow’s milk.
Milk allergy symptoms can vary from person to person, which is why you’ll always hear me say “no two people are the same”. For some, it’s anaphylaxis (requiring an epi-pen) and for others, it’s non-traditional symptoms which aren’t life-threatening.
A delayed allergic reaction is considered to be non-IgE mediated, however, in some rare cases, it is a true IgE reaction. The science behind the mechanics of food allergy isn’t 100% understood the way we understand broken bones and heart disease.
Lactose Intolerance: Lactose intolerance means your body can’t properly break down the lactose (natural sugar) found in milk. People who are lactose intolerant can usually safely consume dairy products where the milk sugar has been removed. Lactose intolerance symptoms are usually GI based, and often delayed a bit after eating. A lactose intolerance is not life-threatening, and does not require an epi-pen.
Don’t Pin Your Hopes on Your Child Outgrowing the Allergy
As you embark on your free-from journey, you will hear/read about kids who have outgrown their allergy. Do some research on the topic and you’ll find a huge range of information. There’s no hard and fast rule about who outgrows what and why, but you’ll find interesting studies and opinions on the matter.
Here’s what’s important to know. First, there is NO CURE for food allergies. In the free-from world, we say “in remission” to refer to someone that has passed OIT and is in maintenance (more on that later). Additionally, we say “outgrow” for kids who were allergic at one point, and without medical intervention, are no longer allergic at some point in the future.
It is entirely possible to develop and outgrow a food allergy at any point in time. Food allergies are based in the immune system, so keep that in mind. Those with a more robust immune system are less likely to have food allergies. If you really want to go down the rabbit hole, study the Amish, and the Blue Zones.
You Don’t Have to Test Each Year
I can’t stress this enough, YOU are your child’s sword and shield (more on that here). You may have doctors that are pushy and want you to do things that make you uncomfortable. You don’t have to. Simply say no thank you, or we won’t be doing that today.
In some cases, the annual testing is so stressful that it’s not worth the endeavor. You may feel more comfortable testing once every few years, or never. We only retested once, and that was to learn if more allergies had developed based on new symptoms. Outside of that, I didn’t sign us up for a battery of tests every year because it wasn’t necessary for us. We removed trigger foods and everything was fine.
You’re going to have to determine what works for your family. Know that testing in children can be very inaccurate, depending on the type of test used. It’s not uncommon to use several tests and confirm via oral challenge. At the same time though, that’s not necessary in very case, so again, do what makes sense for your kiddo.
Should you test yearly, as your child gets older, DO NOT make a big deal about the test. Don’t put pressure on your child. Many adults with food allergies have shared that their parents did this to them and it made them feel like failures. They hated testing because the parents were so desperate for the child to outgrow the diagnosis.
Remember, you can’t think of the diagnosis as a burden. Think of it as another wonderful feature your child has and show them that their diagnosis isn’t going to hold them back in life.
Fully Informed Consent Matters
As someone who has both life threatening reactions to food as well as non-traditional reactions to food, I can tell you first hand that I wouldn’t want someone experimenting on me where food is concerned.
Think of it this way: would you want something done TO you or WITH you? That’s what fully informed consent is all about and I think it’s important that we extend that to kids with food allergies.
Story time. A few years ago, a family came to me for help with their toddler who was getting near to failure to thrive. The child would NOT eat. I asked for a list of known allergens, as well as what they were feeding the child. Turns out, they were feeding the kid quite a bit of what he was allergic to. When I asked why, mom told me “the allergist said it would be OK because the numbers are low.”
First, it’s important to know that the numbers on the test cannot predict what kind of reaction someone will have, or how severe it will be. Second, I hope you can see the moral of the story here. The child was refusing to eat because every meal was PAIN. It’s like asking someone to play Russian Roulette at every meal. I know I certainly wouldn’t want to play that game.
Consider that a story of caution. If your child has a history of reactions to a food, and you have test results, there’s no reason to experiment on them and feed them known allergens. When they’re old enough to truly consent, you can see if they’d like to explore options such as OIT.
How to Introduce Solids to Babies with Food Allergies
A lot of parents with a newly diagnosed baby ask this question first. The answer is twofold. For children that have quick and obvious reactions, introduce solids one at a time and keep a food journal. The journal will help you pinpoint foods that might have a delayed reaction, or a possible food intolerance.
For children with a complex case, you’re going to want a spreadsheet system. Start with what your child is allergic to. Then, look at foods that are cross reactive with said allergens. DON’T introduce those foods yet. Instead, introduce foods that are outside of the food family/cross reactivity. Once you’ve worked through those foods, talk with your child’s medical team to get an idea of which foods would be the safest to introduce next. They might want to run updated tests to give you a better answer.
No matter what kind of situation you find yourself in, do what puts you at ease. Some parents opt to introduce new major allergens in the food court or parking lot of a hospital. Whilst that might seem “extreme” to some, parents who choose to do this have usually lived through awful reactions and would rather have quick access to medical help should it be needed.
Start an Allergy Binder
Keeping an allergy binder that contains the details of the diagnosis along with an action plan and other instructions can make your life more manageable. It also makes communicating needs easier and more efficient. Once you’ve organized this resource, make several copies. There should be at least two copies in your home, one in the fire safe, and have a couple of copies available to those who host your child (grandma , daycare, etc.).
A good binder includes (but is not limited to):
- Diagnosis Details
- Action Plan
- Contact Details for Doctors
- Several Favourite Recipes
- Photos of Safe Products (with labels)
- List of Freezer Friendly Recipes for Your Child
- Language You Use with Your Child Regarding Their Diagnosis
- Any Special Steps You Take for Playdates etc.
- Names and Contact Info for People Who Know How to Host Your Child
Be sure to update the binder if the diagnosis changes, or once every few years to include new products and recipes, etc.
Build a Community
Managing any kind of restricted diet is HARD work. Find other local moms and playgroups or start your own to make sure your child is able to connect with their peers. In some cases, you’ll join preexisting groups, but perhaps you’ll create a protocol to keep your child safe. That could be requesting a food free meeting, being the person who provides the snacks, or having all surfaces wiped down before your child plays with others.
As a parent, make sure you have a support network around yourself as well. You’re going to have to learn how to trust others to help with your child. That means you’ll also need to be able to communicate their needs effectively.
In some cases, the community will need to be a virtual one, or a food free one, and that’s OK. When you find people who really care about you and your child, they won’t mind meeting without food.
Food Proofing Your Home
When it comes to babies and toddlers, we often think about baby proofing. One extra step you’ll need to consider is food proofing your home.
Some parents choose to have everyone follow the same diet as the food allergic child to make their lives easier. For some, it’s not feasible to go that route.
If you have a newly diagnosed baby along with a toddler who is learning to eat, I want you to think about how messy meal times are. THAT is what you need to shield the baby from. This might look like separate eating spaces for a period of time. It will include extra cleaning steps to ensure that your baby isn’t eating crumbs as they learn to crawl.
In the additional resources, I’ve included more information on cross-contact/contamination to help you manage your kitchen.
Preschool & Daycare
It might be a bit early for you to be thinking about preschool and daycare, but it’s a bridge you might need to cross one day. File this info away for then.
When choosing a preschool or daycare, it’s important that you tour the facility when food is being served. You’ll need to analyze how easy it would be for your child to consume food they’re allergic to in that scenario.
You’ll need to ask lots of questions about food, their policy for epi-pens, staff training, and more. The unfortunate truth is that food allergy kids in preschool and daycare have a MUCH higher reaction rate than their older peers. This is because it’s very difficult to watch all kids at ALL times. Additionally, little ones aren’t able to advocate yet, love to share, are curious, and so on.
In some cases, preschool and daycare aren’t the best choice and parents choose to stay home with their child or hire a friend/family member to take care of their child. You can also create a little co-op of your own and share the responsibility with other parents in a similar situation.
No matter what you decide, know that you can always change your mind and look for other options. As your child gets older, you may find that preschool/daycare becomes a more viable option.
Ultimately, The Buck Stops with You
Online support groups can be a great place to meet other parents who are managing kids with food allergies as well. Those groups can help you feel seen and provide a special kind of connection with others.
However, PLEASE, be aware that not everything shared in online groups is accurate. Also remember, asking strangers for medical advice online (it’s done more often than I can count) is not a great idea. The people don’t know your child’s case history and are taking wild guesses based on a short description.
I want to leave you with this final thought. Do you remember when you became pregnant with your first child? There was SO MUCH you didn’t know. Over time, you learned a lot, got yourself and your home ready, and over time stepped into the role of motherhood with more confidence each day. Managing food allergies is just like that. When you first get the diagnosis, it’s going to be HARD to change your routines, shopping, and everything else that comes with daily management. However, as each day goes and you feed your child successfully, you’re going to gain confidence, understand the ins and outs, and know how to take great care of your household. The struggle, it DOES get easier as time goes on, so know that you CAN do this.
Additional Resources
Free eCourse - Newly Diagnosed eCourse
Free Mini Courses - Food Allergy Help 101
Cross Contact/Contamination Article
