Top 25 tips for living with food allergies or caring for someone with food allergies

(To skip the introduction, scroll down to the header that says Top 25 Tips)

Introduction

“The expert at anything was once a beginner.”

― Helen Hayes

There is a steep learning curve with allergies, as there is with many other medical conditions. In my personal life, I manage my own food allergies. At work, I completed an allergy-centric training that focused on recognizing anaphylaxis and administering epi-pens.

Despite these two facts, I was stunned by my child’s first anaphylactic reaction. I was giving him a bath. He enjoyed bath-time, but today was different. Under his eczema I saw the full body hives, the crying that quickly became hoarse and strained as my toddler started to struggle, and realized what I was seeing. Thank goodness there were hives, as I never would have recognized anaphylaxis in another person if those hadn’t appeared! (Hives don’t have to occur with anaphylaxis.)

My son was referred to a great allergist. I credit this savvy, no-nonsense superwoman for teaching us some life-saving lessons. Between common misconceptions, lack of information, and misinformation from what should have been reliable sources, we had made mistakes. She corrected us on what she noticed. And thankfully we have improved as we’ve learned even more. We’ve tried hard to prevent any more mistakes- whether by ourselves or our loved ones, as they are still learning, too.

After some of the shock wore off, we started on a path to self-education over the course of the next few years. I scoured the internet, read literally hundreds of articles, blog posts, pamphlets, newsletters, scientific journals… anything I could get my itty-bitty hands on. I also spoke to various others including pediatricians, physicians, allergists, nurses, and many other food-allergic individuals and parents. I switched my personal allergist. You get the idea, right?

Although I would like to think that by now, nearly 10 years since my diagnosis, I have learned enough to live life to its fullest while mitigating life-threatening allergies, I acknowledge that I am still learning. 

My partner and I often voice our frustration at how long it took to learn what we feel are just the absolute basics—avoiding, recognizing and treating anaphylaxis. Literally just surviving. 

Avoiding reactions can be complicated, however, when many school and social events are food-centric, many people don’t routinely wash hands before touching surfaces or others after eating, cross contamination is common, and a mountain of misinformation abounds! Even food labels do not necessarily guarantee that a food is allergen-free.

Why couldn’t there be a list of the absolute essentials needed to navigate the basics of life-threatening allergies? 

It always seemed like we could never find a solid—yet less than 20 page-list of things that could help us while we were still developing our sea legs on our allergy voyage.

So we made a list. 🙂 

Top 25 tips for managing food allergies

The main points are highlighted, and we provide further details below each if you would like to read further (or want to skip them for quick reading! Been there!)

Please enjoy! Share it! Certainly wish we had this list when we first started!

Thank you to our friends and family on social media that helped us complete this list as well. We are thankful to have access to some very helpful people and resources in our lives.

1. Always remember your phone and medications

Always carry a phone and important medications such as benadryl, two or more epi-pens, and/or inhalers depending on what was recommended by your doctor. Based on the current data, between 16% and 36% of anaphylaxis cases requiring epinephrine require 2-3 doses of epinephrine (https://www.jacionline.org/article/S0091-6749(05)02571-6/fulltext).

2. Keep important numbers stored on your phone and on your allergy action plan

Keep the numbers of your primary care doctor, allergist, and any other important numbers in a safe place (like your allergy action plan) and on your device in case of an urgent question that might not merit a 9-1-1 call. On a similar note, it is also helpful to keep an extra charger or portable charger handy.

3. Know and be able to recognize food allergy symptoms

“Learn how to recognize the signs and symptoms of an allergic reaction so that you can give life-saving treatment early.  Most allergic reactions happen within minutes to a few hours after contact with an allergen.  Reactions can differ each time.  Keep in mind that an allergic reaction can start with mild symptoms that can get worse quickly.

Don’t depend on seeing hives!  Some anaphylactic reactions occur without any skin symptoms (e.g. hives or swelling).

An allergic reaction can involve any of the …[above] symptoms, which may appear alone or in any combination. Make sure to talk to your child’s doctor about how to recognize anaphylaxis.

Small children can have a hard time describing their symptoms.  They may complain of a “funny feeling” in their mouth or throat.  Be aware of words that children may use to describe an allergic reaction.  They may say, “my mouth feels funny” or “my tongue is itchy”.  [Spicy is another commonly used word.]

It is not possible to know how bad an allergic reaction will be. Don’t ignore early symptoms, even if they seem mild, especially if your child has had a reaction in the past.” Excerpt taken from https://www.allergyhome.org/handbook/ with edits in the brackets.

It is important to note that sometimes biphasic reactions can occur, which means a second attack will occur hours after the first.

4. Know your allergy action plan and how to use an epi-pen

• Some important questions to have asked your doctor beforehand about your allergy action plan include: At what point is 9-1-1/the emergency room necessary? When should I use an epi-pen? Who can I call if I have questions? 
• Interesting fact: benadryl will not prevent anaphylaxis. My allergist always reminds us that the fatal reactions most often occur when epinephrine is delayed or not given so it is important to recognize the signs as early as possible
• Take a picture of your/your child’s action plan and keep it on your phone for quick reference. 
• Practice using a trainer epi-pen until you are confident in your abilities. Make sure you know how long to hold it in place (varies by brand), where to place it, how hard to inject, and which way to inject (some are not obvious)
• Don’t leave your epi-pen in extreme temperatures per manufacturer’s directions. 
• We leave a set at home, school, and in our to-go bag. 

5. Always read labels, especially since they can and sometimes do change This is the case even if you purchase the item frequently.

6. Know all the names of your allergens and what various food packaging terms mean

Part of reading labels is knowing less obvious names of your allergens as well as misleading packaging terms. Here are some examples: 

• Milk could go under the name cheese, whey, casein, and sodium caseinate, among many others.
• Lactose free does not mean milk free. 
• Vegan does not mean free of cross contamination from eggs or milk. 
• Many gluten-free items are not truly gluten-free due to cross contamination in shared harvesting, lines or facilities. 
• The vague term “spices” can be used to describe any spice provided it does not come from one of the top eight allergens (dairy, eggs, tree nuts, peanuts, soy, wheat, shellfish, and fish)
• The list goes on… Please talk to your doctor to learn about all the names of your allergens.

7. Certain allergens do not have to be labeled under certain circumstances

Any food or beverage regulated by the Alcohol and Tobacco Tax and Trade bureau (TTB) does not have to be labeled, even for major food allergens. 

As another example, highly refined oils such as some non-gourmet soybean and peanut oils do not have to follow typical labeling guidelines. They contain less allergenic proteins. Although it is believed that most allergic people will not react, some will have reactions to this oil and/or may be advised to avoid these oils by their doctor. It is worth asking your doctor as many restaurants and packaged foods use these ingredients.

8. You may also need to call or check with the manufacturer to check if a food is safe

This is especially the case with the cross contamination of food items and, as mentioned in another tip, with any food or beverage regulated by the TTB. Amaretto often contains almonds.

Food manufacturers in the U.S. are not required to disclose ingredients used in shared harvesting, shared production lines, and shared facilities, even if those ingredients aren’t on the ingredients list. An example of commonly cross-contaminated items for a peanut-allergic person would include almonds, as they are often processed on the same lines as peanuts. 

9. There are many unexpected places allergens can be

Some surprising allergen sources include liquors (as mentioned in another tip), cosmetics, personal care items, lotions, chapsticks, toothpaste, shaving cream, soaps, medications, arts and craft supplies, bird seed, pet food, and more. At the doctor and dentist ask to see ingredient lists of medications in advance of any procedure. Some babies also react to allergens their moms consume, as breast milk sometimes transfers allergens from mom to baby (Don’t let this stop you though if that is what you want of course!). As I said earlier, it helps to know the many names of your allergens or keep a list somewhere handy or until you know them by heart.

10. Know how cross contamination/contact may occur

Safe food can be rendered unsafe by mishandling. There are 3 main types of cross contamination (CC): food to food, food to item, and food to saliva (allergyhome.org). 

Food to food: A nut-free salad has nuts dropped onto it accidentally when serving. The nuts are taken off the salad. The salad still has nut proteins, even if you can’t see them, so it is no longer safe. 

Food to item: Someone stirs mac and cheese, wipes the spoon off, then stirs a soup. The soup is cross contaminated because the cheese proteins were not cleaned properly off the spoon with soap and water.

Food to saliva: While cooking, someone tastes the mac and cheese with one spoon. The person grabs a clean spoon and uses it twice to taste the soup. (This is also why kissing, even on a cheek, can cause a reaction).

11. Know how to prevent cross contamination (CC)

Here are some basics for preventing CC. There are so many ways CC can occur so we cannot list everything unfortunately. 

Wash your hands and dry them with a fresh towel or paper towels before eating, cooking, or serving. Wash any surfaces like countertops and chairs and anything else that will have contact with the food (such as cookware, measuring utensils, potholders, aprons, blenders, cutting boards, knives, spatulas, plates, utensils, etc) very well. Don’t use an old sponge as they can harbor food particles. Disposable is better in this case. Food stuck onto any items after a run through the dishwasher could still provoke an allergic reaction as well. Try to avoid using wooden cutting boards as they are porous and difficult to clean. 

If unsafe foods contact what was safe food, the safe food is now rendered unsafe. For example, as we noted earlier, taking nuts off a salad would not render a salad safe for a nut-allergic person. A new salad would have to be made. Try to keep safe food from being contaminated while in the pantry or fridge. Be careful tasting different foods while cooking and don’t share eating utensils, as allergens from saliva could be passed to the person who has allergies and trigger a reaction. That also means no sharing music instruments that are played with the mouth. Oh, shucks. (Fun fact: Did you know trumpets have something called a spit valve?)

12. Wash your hands with soap and water before eating

This is especially the case if you have food allergies. Hand sanitizer isn’t as effective. Wash your hands after eating if you are spending time with people with allergies.

13. Do not eat food prepared by others unless you are 100% sure it is safe

Trust your gut. Just reading labels requires a lot of diligence and education. Even people who have had allergies for years make mistakes. Many well-meaning, and perhaps well-educated, people may accidentally cross contaminate or provide unsafe food. Also, if someone seems overconfident, they really might be overconfident. I once received unsafe food in the hospital of all places during an inpatient stay. It was good that I checked the label!

14. Advocate and be confident. Remember that you didn’t ask for you or your loved one to have food allergies!  

When I crowd-sourced some tips from friends and family, this was BY FAR the most popular tip. I think because it may also be one of the most challenging. You or your loved one has to play 20 questions each time they go out for a bite to eat (or before even deciding to go out). The extra attention to your food allergies or the anticipation of certain reactions may make you uncomfortable. We have to say “no” a lot, and that can be hard, for all ages.

Once in a while someone may respond inappropriately if they don’t quite understand the severity of food allergies or how reactions may occur. Stand your ground if someone persists in offering potentially unsafe food. Try to stay calm, and don’t apologize. It might be most constructive to speak with facts. Walk away if you have to, or pretend something needs your immediate attention. Remember that the most important thing is for everyone to be safe and healthy. Is it worth suffering life-threatening anaphylaxis to please others? 

15. You may feel overwhelmed, but it will become easier

This was the other most popular tip from our friends. You will relearn how to do things. You will find pantry staples. It takes practice. It will get easier. You will become more confident. You will learn to anticipate needs. You will learn how to set boundaries and provide some structure in otherwise unstructured situations. Every expert was once a beginner. You got this! 

16. Connect with others in the food allergy community

It helps to find empathetic support that truly understands your struggles and successes. 

There are a certainly struggles. Like when my severe food allergy kiddo or I first get a stomach bug I worry if it’s a severe reaction. Usually, it’s not, but it has happened before. About 40% of kids with allergies have experienced a severe reaction (foodallergies.org).  We have our share of stress.

I also like to share in our successes, like finding a great recipe or finally finding the perfect cheese substitute that actually tastes like cheese! Oh, and allergy-safe pizza. And Enjoy Life and MadeGOOD. Oh, and DQ’s new Dilly Bars. I also love Disney… and apparently food, a lot. Basically, there are great moments that people with allergies will be able to relate to better.

It feels good to connect, vent, and know we are not alone. It reduces our stress. We can also learn new things, get new tips, new recipes, or allergy-friendly restaurant recommendations. You may even find out about allergy-friendly or related events!

There are so many online groups on social media. Ask your doctor, they may know of some local groups. Over 10% of the American population has food allergies. You certainly have company.

17. Restaurant specific tips

When eating out speak to the server and the manager/chef. It might be helpful to carry cards to hand out that state your allergens and that all preparation surfaces, utensils, and dishware should be clean. Changing of gloves is also recommended. Many restaurants also keep lists of ingredients for various dishes that are available for consumers to read. When at buffets ask for fresh food from the back to avoid cross contamination at the buffet. Don’t be afraid to ask for something to be made off the menu. Bring snacks as backup. We also avoid certain restaurants where we can tell that they may not understand good cross contamination avoidance procedures or where such procedures may prove difficult. 

For example, with a dairy or nut allergy we wouldn’t go to an ice cream parlour for sorbet, because it is so hard to prevent cross contamination—not that it is absolutely impossible, just rare. I have even visited parlors with signs saying they cannot cater to nut allergies. Nuts spill easily, and scoops are usually used indiscriminately for all flavors of ice cream, which means the ice cream tubs also have cross contamination. If they make their own ice cream, they may not clean the machines between flavors. 

You may be lucky and have a restaurant or bakery that specializes in serving people with food allergies near you.

18. Party/holiday specific tips 

• Bake or buy a batch of safe cupcakes/treats and store these in the freezer unfrosted for parties. 
• If you are an allergy parent, especially with younger children, it helps to chaperone to avoid accidental ingestion. 
• Call party hosts before parties and pack the safe (or better!) versions of food for you or your child. 
• In general, offer to provide safe food for parties whether these be at school, work, or with friends/family—it’s more work, but you will at least know there is some safe food, especially if you have a food-allergic child. If the allergy version is better, you may even find your friends and family preferring the safe versions! It’s a win-win.
• It helps to try party/holiday specific recipes ahead of time in smaller batches so you can find a recipe you like before the holiday arrives.
• Remember to keep safe foods separate from unsafe foods and to follow good cross contamination prevention.
• Try to find alternatives to common activities if need be. For instance, many craft stores sell fake eggs that can be dyed for Easter.

19. Tips for parents of a food-allergic child 

• Make sure that you and others are washing your hands and face as needed, especially after eating or wearing an allergen.
• Avoid and have others avoid kissing your child (in the case of eating or wearing an allergen). Kissing can share allergens for up to several hours (allergyhome.org). 
• We kept our house allergen free to provide our kids a “safe zone” when they were younger. This approach allowed the kids and us to relax when we were home, knowing that we didn’t have to worry about any deadly little crumbs or cross contamination. I realize that this may not be possible for every family, but it worked for us, especially in the younger years. Now we have a designated drawer marked with a large “X” on our fridge in which we keep unsafe foods. That being said…
• If you keep allergenic foods in the house, keep them far out of reach or in a locked cabinet if need be, especially with younger children. Also make sure to follow good allergy friendly practices to avoid cross contamination/contact if that is the case. 
• Teach young children to ask you before eating food, and teach the people in their lives to ask you before providing food, even if it looks like something they have had before. 
• Help your kids learn to navigate allergies. Teach them to wash hands, blow kisses instead of giving kisses (hard I know!), not share food, pack important medications, read labels, advocate for themselves, recognize reactions, and use epi-pens, while they still have you to help and guide as needed. These obviously depend on the age and skill of the child. Practice and experience will build their confidence. Ask your doctor for more information.
• It is important to talk about allergies calmly and to talk to others about your child’s allergies calmly (I’ll be the first to admit I have broken this rule, but we try!). Mortality is a tough concept even for grown-ups to comprehend. It is helpful to teach your child that there is medicine that can help them if they need it. It is useful to also talk to your doctor about other strategies that might help your children (or you) if you need help.
• Medical id bracelets might be useful for young children and people that go out alone or travel. I have also seen t-shirts that say “don’t feed me I have food allergies.” I will add however that my eldest son wore a big brother t-shirt before I announced my second pregnancy, and none of our family members noticed until I pointed it out. Just my experience.
• Not all babies will react to various allergens in breast milk, but some will. A mother’s breastmilk can contain allergenic proteins that peak one to three hours in concentration after consumption (https://jamanetwork.com/journals/jama/fullarticle/193696). It is typically thought that it takes one to two weeks for allergens to clear from breastmilk. The article referenced here (https://jamanetwork.com/journals/jama/fullarticle/193696) had a small sample size, but out of 11 moms only two had peanut proteins in their breastmilk samples four hours after ingestion. Only one had peanut proteins in their breastmilk eight hours later. Don’t let allergies stop you from nursing, if that is what you want to do! Speak to your child’s doctor or allergist if you would like to find out more.

20. If you have a child with allergies that has another caregiver such as a family member, daycare, or school: 

• Make sure caregivers are knowledgeable in good allergy practices. 
• It may help if babysitters come to your house as it might be safer allergy-wise and you probably have safe food on hand.  If the care will take place outside of the house, offer to make or bring allergy-safe treats and foods for your child. 
• Make sure caregivers are trained to follow action plans, recognize anaphylaxis, and administer epinephrine. There should be some sort of individualized health care plan in place if using a daycare or school depending on where you live (see: https://www.kidswithfoodallergies.org/food-allergy-school-planning-tips-for-parents.aspx). Included in that link are ideas for meeting with nurses/teachers/staff as well as considering signing school-aged children up for a 504 plan if necessary. 
• Have a plan for how medication will be stored (unlocked) or if the child should carry it, if appropriate. 
• In the U.S. life-impacting food allergies are covered under the ADA. 
• Ask to find out about special events and field trips ahead of time so you can prepare alternative food options or even help chaperone if possible. 

21. Tips for teenagers and adults: 

• Make sure that significant others wash hands and avoid eating or applying allergens to their face or lips (such as in lotions, soaps, cosmetics, chapstick, etc.) as kissing can share allergens for up to several hours. It is good to have this conversation beforehand.
• As I said earlier, be aware that allergens can be present in alcoholic beverages. 

22. It is helpful for trusted friends and family to know about your allergies in case of emergencies

It may also be helpful for them to know where you keep your epi-pen and how to use an epi-pen in case of emergency. I sometimes check foods for my kids’ food restrictions and forget to check for my own! My partner helps me avoid reactions. 

23. Don’t let food allergies stop you from living life to the full or traveling

Part of why we started this website was to show that several food allergies don’t have to keep you in a bubble. It is of course a little more anxiety-provoking, but we learn to call ahead, pack snacks, and pack extra medications. It is helpful to research our vacation destinations, local allergy friendly restaurants or chains, grocery stores, and local hospitals. Preparation goes a long way.

24. Look at favorite recipes and learn how to sub for allergens. Have ready made foods on hand for when you don’t feel like cooking. 

Most recipes are changed easily.  After some practice it becomes second nature. There are tons of recipes that are already made to accommodate certain food restrictions. My vegetable mac and cheese is soooo good, and it tastes just like alfredo. My kids even ate it. 

There’s a reason we have the term “comfort food.” If there is something you enjoyed before diagnosis, find a safe alternative. You will learn how to get your food fix without eating the offending food. I highly recommend picking those recipes with tons of high star reviews for obvious reasons. It is also a good idea to keep ready-made food on hand for when you don’t feel like cooking or if a new recipe flops.

25. Try to be positive

Focus on what you or your child can have. What are the positives of having food allergies- yes, there are some! Do you cook more? Do you eat cleaner? Can you eat all your egg-free cookie dough without worrying about salmonella? YUM! Have you connected to new friends? Have you learned to advocate or communicate better? Can you still do pretty much anything you did before that isn’t food-related? A positive outlook will help reduce the emotional and physical toll of food allergies.

That’s the list! Is it helpful? Think we missed anything? Let us know 🙂 

If you are looking for a guidebook I highly recommend visiting allergyhome.org. Our child’s allergist gave us a paper copy of their guide. Foodallergy.org and kidswithfoodallergies.org are also worth a visit.

This website does not provide medical advice. It is not intended to be complete, exhaustive, and/or applicable to any individual’s health condition. Consult your doctors before following any of the advice on this website. We are not doctors. You assume full responsibility for using any information on this website and agree that we are not responsible and/or liable for any claim, loss, or damage as a result of using this website.