There was a time in the not too distant past when you were a bit of a unicorn if you had food allergies. Think the 1980’s and 90’s. Then the 2000’s hit and you were suddenly part of a large, growing food allergy community. Today, food allergies affect an estimated 32 million people in the U.S. (and between 220-240 million people worldwide).
You are definitely not alone.
When you are first diagnosed, the diagnosis can feel scary, overwhelming. You’re facing a brave, new world you will have to navigate — ready or not.
Here are 10 Things You Need to Know & Do, not only to survive, but to thrive in your brave, new food allergy world.
1. WORK WITH A BOARD-CERTIFIED ALLERGIST
Seek care from a board-certified allergist for your food allergies. A board-certified allergist will diagnose your food allergies from the data gathered from your reaction history, skin testing, blood testing and possibly oral food challenges. Once the diagnosis is made, a board-certified allergist will advise you on protocols to follow to manage your food allergies and will provide a prescription for an epinephrine autoinjector, if indicated.
2. FILL YOUR EPINEPHRINE PRESCRIPTION ASAP
If your doctor has prescribed epinephrine, fill the prescription as soon as possible. Important things to know about autoinjectors:
Device designs vary
There are different autoinjector brands and device designs. Check with your medical insurance provider to understand what types of devices they cover. If the brand/device you want is not covered by your insurance, try checking directly with the manufacturer as some offer assistance programs.
Practice, practice, practice
Practice using your autoinjector with the training device that often comes with your real device. Later on, you can practice with your expired autoinjectors, using them on an orange or a lemon. You want to be 100% confident using your device and regular practice will help. University of Michigan produced a video that includes autoinjector demos for different kinds of devices. It’s worth a watch. (Fast Forward to 3:42 in the video.)
Store at room temperature
Store your autoinjector at normal room temperature away from extremes of cold or heat. For example, do not store it or leave it in the car. Learn more here.
Track device expiration dates
Epinephrine expiration timelines can vary depending on when your device was manufactured, when it was distributed to your pharmacy, and when you actually purchased it. You will want to keep this prescription up-to-date. Note your autoinjector’s expiration date when you fill the prescription so you know when to renew it. Some manufacturers offer refill reminders when you register your device with them. There are also apps that can help you track expiration dates for your autoinjectors and other emergency medications.
3. ALWAYS CARRY TWO!
Carry two autoinjectors with you — at all times — so you’re always prepared to handle an allergic reaction. (One dose may not be enough to stop a reaction.)
Look for ways to help your children conveniently carry their epinephrine like a SPIbelt or a medication bag that tucks into their backpack. Allermates and PracMedic Bags offer some good options.
In the medication kit, in addition to (2) autoinjectors, think about including the other medication listed in your emergency action plan (e.g., antihistamine, albuterol), a copy of the emergency plan itself, and a wallet card that lists the allergies.
4. KNOW THE SIGNS & SYMPTOMS OF ANAPHYLAXIS
Know the signs & symptoms of an allergic reaction. Allergic reactions do not always look the same or progress the same. FAACT offers a helpful chart of anaphylaxis symptoms that you can download and share with family members, caregivers, teachers and coaches.
If you are managing food allergies for a pre-verbal little one, they might use non-verbal gestures like pulling their tongues or tugging their ears. If they are verbal, they may use words like: “there are bugs in my ears,” or “my tongue feels heavy,” or “my lips feel tight.” Listen closely. Be observant.
5. KNOW YOUR EMERGENCY ACTION PLAN
Have an action plan and know it backwards and forwards. Carry it with you everywhere and share and discuss it with everyone who interacts with your child when you’re not there. Your allergist should provide one, or you can download a form to complete with your allergist from FARE, or AAAAI, or the American Academy of Pediatrics.
Don’t ever hesitate to use your autoinjector. Quiet that little voice in your head that causes you to second guess yourself. Any delay in administering epinephrine can make an anaphylactic reaction harder to stop. “Epi First. Epi. Fast.”
6. BECOME EXPERT AT READING FOOD LABELS
“If you don’t know what’s in a food, do NOT eat it.”
—Food Allergy Parent, NNMG Food Allergic Family Forum
Food labels**
Reading food labels for allergens takes time to learn. This is a critical skill for avoiding allergens.
Be familiar with food labeling requirements and shortfalls.
Know the less obvious names for your allergens where your allergens might hide (e.g., like ‘casein’ for milk, or ‘albumen’ for egg white, or ‘tahini’ for sesame.)
The best way to assess the allergen risk of a packaged food you want to buy is to call the manufacturer and research their production processes and sanitation procedures.
Precautionary Allergen Labels (PAL statements) are sometimes found underneath the ingredients lists and the mandatory ‘Contains’ statements for the Top 8 {soon to be 9} allergens in the US. PAL statements are voluntary and not regulated under FALCPA** other than that they must be truthful and not misleading. If a product does not include any PAL statements it does not mean the food is risk free — the manufacturer has just elected not to provide the information. Decide how you will use PAL to inform your purchase decisions before you shop, and then consistently apply your PAL decision rules {to buy or not to buy or to research further} to your purchases.
Food manufacturers change up ingredients all the time. Read the food label on every packaged food you put in your shopping cart, even if you’ve purchased the product before.
A word about non-food products
Other products you use in your home could contain allergens, as well. Make it a habit to check labels on personal care products like soaps, lotions, shampoos & conditioners, makeup. On personal care products, you’ll find that allergens are often disclosed using their Latin names. Also, be cautious with alcohol, medications, craft supplies, pet foods, birdseed, and mulch. Read the ingredient fine print whenever you can.
7. MOURN THE DIAGNOSIS…THEN MOVE FORWARD
A food allergy diagnosis changes everything — how you socialize, simple pleasures like eating out, traveling, grocery shopping, friendships, family relationships, holidays & milestone moments. It’s ok to grieve over a food allergy diagnosis, but don’t let it block your ability to conquer this brave, new world and live your best life.
Once you’ve processed the diagnosis, get down to the business of learning and figuring out workarounds so you can live the life you want to live. Food allergic living gets easier over time and you will gain confidence as you grow your knowledge base and accumulate lived experience. Know that you are not alone.
The FAACT and FARE websites are great places to start your learning journey.
When you’re newly diagnosed with food allergies, you may feel overwhelmed and not ready to seek support. When you are ready though, some hand holding and encouragement from other families who are ahead of you on the learning curve can definitely make the learning process easier.
Consider joining some support groups. You will find a warm welcome and community when you join FB groups like FRIENDS HELPING FRIENDS and NNMG Food Allergic Family Forum.
Choose your groups with care as some foster more positive and caring spaces than others. Always be sure to fact check health-related information shared in groups with your healthcare provider to verify that it’s current and accurate.
8. EMPOWER YOUR KIDS
Find age-appropriate ways to equip your children to self-manage their food allergies over time. This is a gradual and gentle process that takes place over years. It can involve creating and following family rules, practicing reaction management and self-advocacy skills, behavior modeling, role playing, and letting go little by little as your children master skills and grow in confidence.
Simple rules
For example, to begin, teach them simple rules like:
- “only eat food Mommy gives you” or “only eat food from your special snack bag.”
- to always ask the grown up they are with, “Is this {food} safe for me to eat?”
- to wash hands with soap and water before and after eating.
- to always take their ‘special’ medicine bag everywhere they go.
- to wear their ‘special’ bracelet every day.
Rules are not cast in stone and should be updated as your child grows. You’ll probably want to consider creating a separate set of family operating rules, as well, like:
- “no allergens allowed in the house,” or
- “safe foods are always in a special place in the kitchen,” or
- “we practice with the autoinjector on the 1st day of every new month,” or
- “we always bring safe snacks in our special snack bag wherever we go,” or
- “if a food does not have a label we never eat it.”
Children’s books
Track down some children’s books on food allergies to read to them when they’re little. Take a look — here, here, and here — for some children’s book inspiration.
For those special times when you can read a book to your child’s class, see if the teacher will allow you to share an age appropriate book about food allergies. These often include beautiful lessons about kindness and inclusion.
Food allergy friends
Help your children connect with other kids with food allergies. It can be life changing for them:
- Look into the virtual Food Allergy Buddies Program offered by Massachusetts General Hospital.
- FAACT offers Camp TAG, an in-person day camp. At Camp TAG children with food allergies (ages 5 to 13) can connect with peers for a lot of safe fun and a little bit of food allergy learning.
- FARE organizes an annual food allergy Summit with powerful teen-specific sessions where teens can share their food allergy experiences and learn from each other. FAACT also organizes a Teen Retreat, typically in the Fall, for tweens, teens and college students (from 11 to 23), their siblings and parents.
9. EXPECT MISSTEPS. IT’S OK.
When strict avoidance of all your allergens is the medical treatment for your condition, it’s likely you will have surprise allergen encounters in your future. Missteps are part of the journey. Reactions will happen — for some sooner, for others later.
When a reaction strikes, tap your calm and apply the emergency management skills you’ve been practicing—for real. Get through it.
‘What if’s’ and feelings of guilt and anxiety are common feelings post reaction. They are valid. Let them flow and give yourself and your loved one the space and grace to move beyond the reaction. If you or your loved one are having difficulty with this, there are therapists who specialize in food allergy counseling and can help you regain your mental and emotional equilibrium. Your health care provider may be able to refer you to one or you can look for one at The Food Allergy Counselor Directory. Allergic Living published an excellent Anxiety Guide you can buy.
Stay mindful of your behavior and attitudes about your family’s food allergies so your anxiety does not spillover to your children. Resist the urge to hover. Hovering will only slow the development of the confidence they will need to eventually self-manage their food allergies.
Every reaction is a learning opportunity. Learn from these experiences and figure out what you’ll do differently if (when?) there’s a next time.
10. COMMUNICATE & EDUCATE
Clearly and consistently explain your food allergies to everyone who will care for you or your loved one with food allergies. Don’t hesitate to share your action plan and teach them how to use your epinephrine autoinjector. Accept that you will need to explain and re-explain to the same people over time because people will forget the details.
A handy tool for sharing your child’s allergy information is this ‘Passport‘ developed by CFAAR (Northwestern’s Center for Food Allergy & Asthma Research). There are apps, too, that can make this easier. Take a look at the apps from We Belay and Allergy Force.
Your children will have amazing lives filled with adventure and growth. Food allergies do not and will not define them. They are so much more. While your kid’s lives may be lived a little differently, they will be rich and full and uniquely theirs.
Thank you to the members of the NNMG Food Allergic Families Forum for sharing their knowledge and insights for this article — so grateful for your generosity (and kindness.)
Allergy Force is committed to helping people with food allergies live freely — with less fear, less anxiety, more confidence — through technology and education. The Allergy Force food allergy app is peace of mind in your pocket.. |
|
… |
|
**A WORD ABOUT FOOD LABELING
Food labels were originally created to inform consumers about the nutritional content in the packaged foods they buy. They were not created to be risk management tools for people managing food allergies.
Food allergy disclosure on food labels is regulated under the Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA). In 2021, the FASTER Act was approved which recognized sesame as the 9th Top Allergen in the US, to be added to food labels as of January 1, 2023.