5 Tips to Help Food Allergy Patients at Any Doctor Appointment

As a food allergy sufferer, how do you set yourself up for success when you go to the doctor?

Being a patient with food allergies means putting a lot of trust into your doctors and even allergy testing.  But, how do you know when things are going right...or going wrong? Luckily for you, I’ve got a few tips that will help you figure things out!

Before we begin, you may be wondering - who are you to tell me about how to manage doctor-patient relationships? Well, there’s something you may not know about me. Something about my former life and who I was before becoming a health coach. I used to be an lawyer. Specifically, a medical malpractice lawyer. 

This means I spent my career working with doctors as experts, reading medical records and deposing doctors. I had to learn to speak the lingo, and I had to be a quick study when some new medical condition came my way. Little did I know that just a few years later, these skills would become vital to my success as a food allergy parent and health coach. 

I love doctors. I think they are well-intentioned, smart and reliable. But, I also think that they are human and can make mistakes just like anyone at any job. It just so happens that the stakes are higher than most when it comes to the field of medicine. So, what can we do as food allergic patients to help our relationships with our doctors become a winning one?

I want to share my formula with you. Using the knowledge I’ve gained in my former attorney life, combined with my experiences as a food allergy mom and my education as a health coach, I created the following list to help you and your medical team achieve success!

1. Request a copy of your medical records, including any test results. By law, patients have the right to access their medical records (with very few exceptions). I suggest requesting copies of your medical records for a few reasons:

   • If you have questions after your appointment, you can use the records refer back and jog your memory.

   • They’re helpful to have to reference or guide you in a conversation if you need to call your doctor with follow-up questions or conerns.

   • You can bring copies to your other appointments with other doctors instead of putting the pressure on yourself to get all of the medical mumbo-jumbo right.

   • If you want to go for a second opinion, you don’t have to feel awkward requesting to have your medical records sent to a different doctor in the same field.

2. Remind your medical provider about the patient’s medical history. Doctors and nurses see a lot of patients everyday. Yes, a lot of them have amazing memories, but you don’t want to 100% depend on them remembering (or having recorded) every single detail about your treatment and condition. So why not make your visits a team effort?!

   • When your doctor asks you what’s been going on or how things have been going, use it as an opportunity to recap the takeaways from your last appointment and highlight anything you think they need to know. And, if they don’t start off by asking you how things are, make it a point to bring it up on your own and fill them in.

   • It can be intimidating to do this (especially if you feel like you’re being rushed or that the doctor wants to just get started with the appointment), but take your time to go through everything you need to say and remember this is a vital part of the appointment. It directly relates to the reason for your visit and the next steps in your care plan.

   • Think of it this way, even if it feels unnecessary or bothersome at the time, you are doing a service to both you and your doctor by providing your recap. Only good can come from it.

3. Keep a running list of questions and concerns either on a notepad or on your phone between appointments. This is a great tactic to prevent the “what did I need to tell you?” moment that can often occur during a doctor appointment. You go to see your doctor for one reason and plan to bring up a question or concern at the appointment, only to get side-tracked with all of the new information that comes up during your visit. The benefits are plentiful:

   • Your doctor will definitely appreciate it when you use your list to stay focused and organized while being as efficient as possible with your time as well as your doctor’s.

   • It helps you keep track of non-emergent questions or concerns you have between visits and allows you to ask them all at once and get definitive answers from your allergist, pediatrician or other medical provider.

   • Since you’re working off a written list, use it to your advantage! As you talk to your medical provider, write down the information and answers directly onto your list, and walk away with concrete information you can refer back to later. Winning!

4. Recap and ask for written instructions. When your appointment is wrapping up, take a quick minute or two to wrap things up. How do you do this exactly? Acknowledge that the appointment is coming to an end and then confirm that you understand the diagnosis and treatment you’re supposed to do at home:

   • This looks something like, “Thanks so much for your time today. I want to make sure I understand everything before I leave. So, you think that we are dealing with (insert diagnosis)? When we get home, you want us to start (insert medication or treatment discussed - include frequency of dosing and amount)? One last thing, is there anything else I need to know?” Or you can ask something along the lines of, “It feels like we went over a lot today. Can you please recap what you think are the most important things I should know before leaving this appointment?”

   • If you’re confused about something your doctor said, you can always ask them to explain it further: “You mentioned something about “X”. I feel like it’s really important but I didn’t understand it that well. Could you please explain it again?” As your doctor explains the information again, feel free to interject with your questions.

   • Other things you might want to clarify: Is there anything you should look out for or know when starting a new medication (ex., side-effects or things such as - does the medication need to be refrigerated or given with food)? Is there anything to be aware of that would indicate treatment is working, or not working for that matter? If you’re dealing a new food allergy diagnosis, you may want to ask about the results and whether you need to be concerned about cross-contact. Also, review your anaphylaxis emergency plan.

   • Remember, there is no wrong question when it comes to your or your child’s health, so know you’re doing the right thing when you seek more information.

   • Also, if you notice you’re leaving the office empty-handed, don’t be shy. Ask the office staff to make you a quick copy of the doctor’s orders or ask them for a piece of paper (or use your phone) to write them down yourself. Make things easy for yourself and get it all in writing so you know exactly what to do when you get home.

5. Be the middleman. This tip goes great with tip #1 (above).  If you’re dealing with your child’s food allergies, chances are that you have both an allergist/immunologist and a pediatrician. It’s vital that all of your child’s doctors know what is going on with the patient’s health and treatment. Why is this important?

   • Typically, your doctors are not consulting each other regularly or without prompting, so one doctor is most likely unaware of any new diagnoses or prescribed medications unless they hear it directly from you.

   • This may come into play in a variety of circumstances. For example, if your child is undergoing OIT, he may not be able to receive a vaccine while undergoing this type of treatment (or he may need to take a few days off of food allergy treatment following getting a vaccine). Your pediatrician may not be intimately aware of oral immunotheraphy treatment protocol, so you would want to make sure it’s cleared by your allergist and that being vaccinated would not interfere or have any negative results. Some children with egg allergies may not tolerate the flu vaccine (although a lot can). Your pediatrician may want to give your child this shot, but you may want your allergist to ultimately be the one who makes the call. Additionally, some pediatrician may make dietary recommendations or handle eczema treatment, which can coincide with food allergy issues.

   • Make it your job to make sure everyone is on the same page before proceeding with any new treatment or recommendations. You want all of your doctors to have all of the correct and up-to-date medical information before drawing any conclusions about your (or your child’s) health.

Have you joined our food allergy fam? Click here to get access to our free resource library, stocked with goodies to help you on your food allergy journey. I’m always adding to it, to check back often!

Thoughts on Food Allergy Treatment - Part 2!

After my last post about food allergy treatment, there were a lot of follow-up questions from my awesome readers. I want to make sure you get all the info you need, so let’s jump on in + take a deep-dive…

Have you ever heard the saying, “the days are long, but the years are short”? That about sums up my feelings on food allergy treatment. Honestly, some days it’s a breeze and other days the struggle is real. The thoughts that run through my mind range from: “Ugh, more grinding up nuts” to “I hope my little guy doesn’t put up a fight today” to “Sundays suck because this is our big maintenance day” to “We are so fortunate and this is life-changing”. But, looking back, the last 20 months have FLOWN by and it is amazing how far we’ve come in such a relatively short amount of time. Walking by the nut butter aisle of the grocery store used to leave me in a panic and now our little guy is eating cashews! Even when sometimes feeling a little treatment burnout, I truly feel blessed that our family is able to access treatment and realize how very, very lucky we are.

The Commitment to Food Allergy Treatment

Dosing

Someone recently asked me - how much of a commitment is maintenance dosing and is it forever? The short answer is OIT dosing and SoCal Food Allegy’s TIP dosing is a huge commitment and it is something that you need to keep up with forever (or at least maybe until different treatment options become available) and when you’re in the thick of it, it feels like forever. 

Now for the long(er) answer. I highly recommend that you do not start OIT or TIP unless you know you can be committed. From what I’ve heard, if you stop the program, there’s a chance that your child’s food allergies will not stay in remission. However, I’ve read other articles that say that whatever improvements are made to your immune response should stay improved. If you are on the fence, definitely voice this concern to your doctor and find out more about the program and what would happen if you stopped during the course of treatment or if you discontinued maintenance once graduating from the program. This will really help you get a better idea of whether OIT or TIP is right for you. 

The commitment during treatment is a daily one. There are some days I wake up and it feels like Groundhog Day. I can’t believe I have to give maintenance foods AGAIN. Not to mention, later in the day is time to dose our treatment food. So, twice a day you need to be on your A-game to take care of everything. There is no vacation from food allergy treatment. When I get in this mood, I just remind myself of the big picture, suck it up and just focus on getting it done, so I can check it off my to-do list.  

Dosing some foods is more time intensive and complex than others. For instance, our egg dosing required that I separate the egg whites from the yolks and then wash the yolk sac while praying it wouldn’t break. I eventually got the hang of it and would prepare the egg dosing for a few days at a time, keeping extras for the next day or two in the fridge. 

As far as the tree nut and sesame seed dosing goes, I have to just regularly grind up the nuts and seeds before serving them to my little guy for dosing. I’m able to make and store larger quantities, so this is not a daily or even weekly task. Thank the Lord. Insert praise hands emoji.

Then, once all of that prep is done, it comes time to actually feed the allergens to your kid. At first, it felt like a blind leap of faith. Feeding your kiddo something you know to be potentially life-threatening definitely goes against that motherly gut instinct we use to guide us. 

Once I was able to ease my anxieties, it was time to get down to business. I’m so, so lucky that my little guy is a people-pleaser and mostly easygoing. For the most part, he’s been a complete champ about eating his allergy foods. There were times, however, that I would need to invent my own food allergy concoctions to prepare some foods. At one point, we needed to feed our little guy coconut flour and apple pectin as well as buckwheat flour and baked eggs. Those were in addition to several tree nuts. I tried smoothies, cookies, muffins and pancakes. He loved some of the nuts, but others, not so much. We tried giving those with honey, cream cheese, applesauce, chocolate, ketchup, jelly, yogurt and sun butter. Sometimes he would be fine with eating his allergy foods one way, only to decide the next day that it wasn’t his jam anymore. (That was always fun when we had to get out of the house in a rush to get to school). Without a doubt, going through TIP has made me more creative as a parent and a cook ;).

When starting off with the treatment, we only had to worry about one treatment food and a few “recommended” foods (i.e., foods we gave 3-5 times per week to help prep my son’s immune system for the dosing to his most severe allergens). As my little guy progressed during the program, the amount of food we needed to give him also increased. This meant adding more food prep to our lives and sometimes more ingenuity in feeding him his dosing.

Because he’s in preschool, I decided to not stress our family out with trying to get to school on time. I spoke with our teachers, let them know the situation and would usually arrive about 30 minutes late each day. I decided to take advantage of the luxury of being able to be late (since the school doesn’t hand out tardy slips) rather than rushing in the mornings and making things stressful. If you have older kids or need to be out the door at a certain time for work - not to worry - it is definitely doable and can be done without anyone freaking out. It just takes preparation, organization and a parent-child team effort. Or, contact me and I can help!

Overall, it really does become second-nature and the intimidation factor decreases as you get the hang of the program.

Clinic Appointments

At SoCal Food Allergy Institute, we usually had our appointments every six week (on average). We are in state for the clinic, so our timetable may look different than out-of-state or even out-of-country patients. Talk to your OIT or TIP doctor about what your schedule would look like in their program to evaluate this component of your food allergy treatment commitment (especially in light of COVID-19 and your level of comfort in traveling or even going to doctors’ offices).

As far as our TIP appointments are concerned, they’d go something like this… Arrive at the office, they review vitals and hook up your child to a heart rate monitor. Then a nurse comes in who reviews the treatment with you, including discussing how things went with dosing at home. The next step is to challenge your child’s tolerance of the allergen you have been treating at home. The nurse gives a pre-determined quantity of the allergen to your child to eat and then sends them off to an exercise room for five minutes to elevate their heart rate (this is monitored by medical personnel). You and your child then return to your exam room to be evaluated by the nurse for any signs of allergic reaction. If all goes smoothly, you go on to the dosing part of the visit.

During the dosing portion of the visit, your child is introduced to the next allergen you will be dosing at home. The nurse has your child eat a specific amount of the allergen in the office and then you wait for a designated amount of time to see if there is any reaction to the dose. In our case, the office dose that was given was always more than the first dose I was to give at home. This made me feel a lot more comfortable about giving the allergen at home. I knew my little guy could tolerate the first amount I was supposed to give him because he had had more at the office and was fine.

We’d then begin our six weeks of dosing at home to again return to the clinic and start the whole process over again with new allergens. Woohoo! We were usually in and out of the office in about an hour, max.

I should also mention that about 3/4 of the way through the program, our little guy again had blood work to check his IgE levels to ensure that he was responding to the program as anticipated. The lab results would also presumably be used to adjust the remaining portion of the treatment as necessary, as the remaining allergens were the ones with the most severe responses. The blood draws can be tough with our little ones, so it’s good to know what to expect going into the program.

Remission

Our treatment program has us coming back for one remission visit after clearing pistachio and cashew (most severe allergens). After the remission visit, we are to return for annual remission visits. In between remission visits, I anticipate that we will need to continue to with daily and then eventually weekly and/or monthly dosing. I’ll give an update once we get our plan.

Treatment Plans

So, now you’ve heard all about our experience with SCFAI’s TIP program, but what does this mean for you? What would your child’s food allergy treatment look like? The answer is - it depends. It depends on the doctor you go to and the type of program. It depends on if you’re in or out of state. It depends on the foods your child is allergic to. And, it depends on all of the testing results.

Peanut allergies tend to take longer to treat than other allergies. If you are only treating a couple of allergens, then your program will be shorter than someone who has 10+ allergens to treat. If you’re traveling from out of state, your protocol may be grouped differently than someone who lives close to the clinic. These are all factors take into consideration when developing your treatment plan. I suggest asking your doctor about the anticipated length of your program if you’re on the fence about it and this factor is an important one for you.

Also, I’d love to know - has anyone completed either TIP or OIT and had any problems or relapses in remission? Or, are you thriving? I’d love to hear from you!

Also, subscribe to my free resource library for cool allergy-helpful docs. I’m planning to add a OIT/TIP treatment chart to help you during your journey.

Is Food Allergy Treatment Really Worth It?

My thoughts on food allergy treatment now that we’re almost done…

In case you’re new here, hey, I’m Kim, food allergy mom and health coach. My son was diagnosed with life-threatening food allergies when he was about 10 months old. We lived in fear for over a year, constantly worrying about cross-contact with his allergens and him mistakenly eating one of his allergens. 

Six months after moving to LA from Miami, a friend (or saint in my book) told me about Southern California Allergy Institute. When I lived in Miami, I had never heard of or even thought about any sort of food allergy treatment. All of the sudden my world expanded to possibilities I had never imagined. And to think, the facility was located in Long Beach, just a short drive away. I’m not exaggerating when I say I cried tears of joy. The universe had a plan for us and who was I to ignore it.

I signed up online for the food allergy treatment wait list at SoCal. I was number 1,264. I was on the list for around a year when I got the email. It said we were up next. Mind blown. Heart racing. 

When we finally entered the program, our little guy was a few months shy of his third birthday. There was a good amount of paperwork, blood work and skin prick tests, all accompanied by anxiety and stress. Nevertheless, we got through it, focusing on one task at a time.

I’ll never forget that first blood draw. Our little guy had only had it done once before and had no memory of it. Not knowing what was going on, he watched the entire time as the phlebotomist took his blood (seriously?!). Looking back, I think he was just trying to figure out what was going on. We tried to distract him with the always tempting iPhone, but he was taking it all in. After the blood draw was finished, he was pale white and I was so worried he was going to faint. My heart still breaks as I type this.

Then the long journey of the Tolerance Induction Program (TIP) began. It is a form of oral immunization treatment that is specific to SoCal Allergy Institute. Based on our little guy’s results from his blood work and skin prick test as well as his medical and dietary history, Dr. Randhawa created his individualized treatment plan. (I’ll get into that in a future blog post). The result was a personalized protocol that consisted of us giving our little guy a certain dose of a specific allergen for a prescribed amount of time, until we treated all of his food allergens.

Typically, our course of treatment would look something like this…We would go to the office to introduce one food allergen. If the introduction of the allergen was tolerated in the office (it always was), we were sent home with very small amounts of the allergen to give daily as a treatment dose. We would be tasked with giving the dose of the treatment allergen every afternoon, while also giving a maintenance dose of allergens we had already treated each morning. Each week, a larger amount of the treatment allergen would be introduced at home until we reached a certain amount. At the end of the food introduction dosing protocol for the allergen we were treating (usually six to eight weeks), we would go back to the office for a food allergy challenge.

During a food allergy challenge, a larger dose of the allergen is given to the patient, the patient’s heart rate is purposely elevated through exercise, and then the patient is monitored for any type of allergic response. If the patient tolerates the allergen during the challenge, that food is moved to maintenance dosing. A new protocol is then started for the next allergen on the list.

I always found it very reassuring that the allergen was first introduced at the doctor’s office with medical professionals who were extremely well-equipped to deal with anaphylaxis. My logic was that I’d rather have our little guy come into contact with his allergens while at the doctor with nurses and doctors monitoring his response, than out with our family in a random situation without medical staff nearby. Although nerves would sometimes take over during these appointments, I always felt like I was in the best hands.

One year and seven months of food allergy treatment have passed. One more blood test, one more skin prick test, numerous doctor appointments, multiple food challenges and countless maintenance doses later, we are here. Our next appointment may very well be our last appointment before food allergy remission! Holy freakin’ moly. 

So, now that you know a little of the backstory, I’ll get to the reason you clicked on this post. After being in a food allergy treatment program for so long, would I do it again? The answer is a resounding “YES!”. There were some small hiccups along the way, plus the (major) commitment of keeping up with all of the treatment protocols and not mention the anxiety that comes with purposely feeding your kid a food that you’ve been told could put him in the hospital, but having food freedom is worth it.

As long as we keep up with maintenance doses during remission, I don’t have to worry about play dates, cross-contact with packaged foods or eating at a restaurant. Recently, we were even able to go for ice cream without worrying about issues of food allergen cross-contact! This treatment has been a real game-changer.

Now, don’t get me wrong, I know it’s not all over and done with forever and ever, but life as we know it is much more relaxed and comfortable than what it was three years ago. I’m still committed to always carrying our Epi-pen with us, just in case, continuing food allergen maintenance dosing for years to come and annual food allergy testing, but hey, that’s life as a food allergy momma. We’ve got this.

Want more info on food allergy treatments and our treatment in particular? Want to know the nitty-gritty details of the ins-and-outs of carrying out OIT protocols on a daily basis? Let me know in the comment below, and I’ll make sure to get another post up for you soon!

**Also, have you joined our food allergy fam? Click here to get access to our free resource library, stocked with goodies to help you on your food allergy journey. I’m always adding to it, to check back often!

Patriotic Smoothie Popsicles for 4th of July!

Happy 4th of July everyone!

In celebration of our country's independence, it's always fun to take the patriotic theme up a notch, so let's do it! Get your popsicle molds ready because it's about to get red, white and blue up in here...

My kiddos and I love making smoothie popsicles by experimenting with different ingredients and throwing them all in the blender. There are so many variations. Want a more smoothie-like base? Try milk or a plant-based mylk to start. Want a thinner consistency? Use water or coconut water. Add fruit (and veggies!) from there + throw in some ice cubes if that's your thing.

Don’t have any popsicle molds? That’s okay! Use only 1 cup of your base liquid and add some ice cubes for a creamier texture. Then put each smoothie side-by-side in a bowl to create a red, white and blue smoothie bowl! Top with berries, banana slices, hemp seeds or coconut flakes to stay on theme ;).

The best part about all of this, is the ingredients are completely within your control, so it’s easy to make tweaks so that they’re allergy-friendly for your particular needs. Check out my recipe suggestions:

Red Pops:

• 1 - 1.5 cups of base liquid

• 1/2 cup of raspberries

• 1/2 cup of strawberries

• Additional Options-

  • Chia or hemp seeds for protein

  • Honey (to desired level of sweetness)

White Pops:

• 1 -1.5 cups of base liquid

• 1.5 cups of frozen pineapple

• 1 banana (frozen if possible)

• Additional Options-

  • 1/3 cup of yogurt (dairy or non-dairy)

  • Hemp seeds

  • Honey (to desired level of sweetness)

  • 1/2 tsp. vanilla extract

  • Top with coconut flakes

Blue Pops :

• 1 - 1.5 cups of base liquid

• 1/2 cup frozen blueberries

• 1 medium banana

• Additional Options:

  • 1-2 tsp. blue spirulina (blue majik)

  • 1 small handful of spinach

  • 1/4 avocado (for creaminess)

  • 1 tbsp. sunflower seed butter 

  • Hemp or chia seeds

  • Honey (to desired level of sweetness)

Enjoy and tag me on Instagram in any popsicle photos (@hey_kimk) - I'd love toSubscribe the Hey, Kim K. Newsletter right here! check out your creations! And, let me know in the comments how everything turns out :)

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Race + Food Allergy Equality

Together we can make changes in the food allergy community.

Today I attended a webinar. The topic was “For The Health: A Conversation on Race and Food Allergy.” It was eye-opening and inspiring. My gratitude goes out to Food Equality Initiative for hosting the event and to Thermo Fisher Scientific, Alerje and Spokin for their sponsorship.

The panelists were extremely dynamic and had so much information that covered many areas applicable to the food allergy community and the BIPOC community within. Make sure to check out all of these great leaders listed in detail below!

All of the messages and information provided during the webinar showed me how far we’ve come and that there’s so much more we can do…

So, what can we do? I’ll go over my webinar notes with you and give you some solid suggestions for taking action, as recommended by the panelists.

In General

• There is a real disparity between health, resources and education in the BIPOC community and white community when it comes to food allergies.

• Black children are 7% more likely to have food allergies compared to white children.

• Interested in what Dr. Lakiea Wright is doing? She’s committed to educating communities about food allergies, is advocating to ensure children of color are included in clinical studies and creating a science lesson and activity to disseminate to kids in under-served areas and eliminate disparities.

• Javier Evelyn spoke about, Alerje. It’s an app and product that has definitely piqued my interest. It’s a a smartphone case that carries a slim epinephrine auto-injector and connects to an app. For more details, click here for an article I found about him and Alerje.

• Denise Woodard spoke about her motivation for creating Partake Foods and her belief that everyone needs to be educated about food allergies and advocate for policy change. P.S. - Our family loves Partake’s cookies!

• Thomas Silvera and Dina Silvera spoke about why they created Elijah-Alavi Foundation, the passing of Elijah’s Law, their advocacy and education efforts and some projects they’re working to develop to support children and parents.

  • Dina also gave some great tips for dealing with schools in the case that you get push-back when advocating for your child’s food allergies:

    • She said not to be timid in bringing this up to teachers, administrators and staff. It is a serious issue and needs to be treated as such. Be strong. Be stern.

    • Come with medical forms. These are legal documents that entitle your child to rights within the school system. They cannot be ignored.

    • Find out if there’s a nurse (or someone else in a similar role) and ask about that person’s hours. Some are not there full days or even everyday and it’s good to be aware of who would be handling a potential food allergy reaction. It is also important to make yourself known to that person and let them know about your child’s needs.

    • Make sure to fill out a 504 plan or IEP to document issues pertaining to your child’s food allergy disabilities. She prefers an IEP because it not only deals with medical issues but also addresses educational support. (A fellow attendee posted this link to an article for more information on 504 plans).

• Emily Brown spoke about Food Equality Initiative and how it is important to educate yourself on how best to help the BIPOC food allergy community. That being said…

How to Help

• You can make a difference by making a donation. The above-linked organizations have some great and impactful projects that are both ongoing and in the works. Assisting them with funding so that they can get things done is a great way to make a difference. Click on the organization name for a direct link to donate.

  • Food Equality Initiative

  • Spokin

  • Elijah-Alavi Foundation

• If you’re in a position to invest in a BIPOC led company, do so! Or, if you know someone who can invest, put them in touch. Just make sure everyone actually wants to follow through before beginning the process.

• Don’t have investor-type money? Use the power of your purchase! Buy Partake Foods at your grocery store or online, or check out Alerje. Keep your eyes open for more products that fit your needs.

• Are you a medical professional? See if you can volunteer at local health centers to provide food allergy education or support.

• Want to get more involved in an organization that supports the BIPOC community? Do your research. Check out organizations and make sure what you have to offer truly aligns with that organization. If it’s a match, reach out and offer your talent.

Other Information

• Click here for information from the American Academy of Pediatrics on the impact of racism on a child and adolescent health.

• Click here to watch the webinar replay.

Panelists

• Dr. ​​​​​​​​​​​​​​Lakiea Wright (Board certified Allergist US Medical Director ImmunoDiagnostics-Clinical Affairs ThermoFisher Scientific),

• Javier Evelyn (Founder and CEO of Alerje, noted as Crain's 40 Under 40, and founding team member at MedTech Color),

• Denise Woodard (Founder and CEO of Partake Foods),

• Thomas Silvera (President at Elijah-Alavi Foundation Inc.),

• Dina Silvera (mental health advocate and executive creative director at G.A.M.E.), and

• Emily Brown (Founder and CEO of Food Equality Initiative)

Moderators

• Karen Palmer (food allergy advocate, Certified Professional Coach and Operations Consultant and food allergy parent) and

• Linsey Davis (two-time Emmy Award winning correspondent for ABC News and successful children’s book author)

Leave a comment below to let us know if you have any suggestions about how to best support the BIPOC food allergy community!

Update on the FDA's Temporary Labeling Policy

Straight talk from the food manufacturing associations - How the FDA’s new ingredient labeling policy is being implemented

First, THANK YOU FARE! FARE organized a much needed and informative webinar addressing the food allergy community’s concerns about the FDA’s latest labeling flexibility policy.

The panelists for the event were quite impressive. A group of of high ranking individuals within their respective industries whose roles involve overseeing and integrating the FDA’s policy for their associations. The panelists were: Debra Miller (Senior Vice President of Scientific & Regulatory Affairs of the National Confectioners Association), Donna Garren (Executive Vice President of Science and Policy of the American Frozen Food Institute), Lee Sanders (Senior Vice President, Government Relations and Public Affairs as well as Corporate Secretary for the American Bakers Association) and Joe Scimeca (Senior Vice President, Regulatory and Scientific Affairs.of the International Dairy Foods Association).

It felt comforting to see each panelist taking the time to address our community’s concerns. They provided clarity on the labeling and manufacturing issues at hand and a glimpse into what is happening within the food manufacturing industry.

Now let’s jump into my takeaways from the event!

In General:

• The panelists reassured us that each industry is very aware of the challenges and dangers that the food allergy community faces on a daily basis. Each association’s members are highly trained about food allergies and are sensitive to their consumers’ needs.

• There have been no ingredient changes in relation to allergens. The associations’ members have not needed to make any substitutions as allowed under the FDA’s new temporary COVID-19 labeling policy. There are a few reasons for this:

  • They haven’t had issues getting ingredients.

  • A change in ingredients would most likely lead to a change in consumer experience. An ingredient substitution (or omission) may result in the food tasting different to the consumer or offer a different texture than what they’re used to. Companies want to remain true to their customers’ expectations and not turn them off from a product they once loved.

  • A change in ingredients sets off a chain of events for a manufacturer. The manufacturers need to go through a very detailed and involved protocol to evaluate any issues pertaining to a new ingredient. This means checking with new suppliers about the sourcing of such ingredient, figuring out the impact on the company’s product line and updating the plant’s food safety plan (this includes safety measures for hazards such as allergens). These, among other things, are required by the law at all times.

• Theoretically, if a substitution is needed to be made due to lack of ingredient availability, it will not be a one-off occasion for only one manufacturer. This will impact many companies and will be seen throughout an industry.

What You Can Do as a Food Allergy Concerned Consumer

• Most packaging has already been printed and therefore will not be updated, so if there are ingredient substitutions you can find the information using the following tools:

  • Check QR codes and Smart Labels for packaged foods! This was emphasized to be one of the best ways to get the most recent and reliable information.

  • Check companies’ websites for updates about their products.

  • Look out for shelf markers at grocery stores. These are signs that are put directly on the shelves about a product (similar to those during the COVID-19 pandemic that let you know a store’s toilet paper was out of stock).

  • Stickers may be put on packages, but there is concern that they fall off on their way to the grocery store shelves.

If You Still Have Questions

• For any questions you have about ingredients or substitutions, call the company! There should be an 800 number on the packaging.

• What if the customer service rep doesn’t know what you’re talking about and doesn’t seem to know about the FDA’s new policy? Politely ask them to look into it! Ask them to check with their Quality Assurance (QA) Department and get back to you. Feel free to ask for the customer service representative’s name and direct line so you can follow-up if needed. Most likely, the representative’s lack of knowledge is just a miscommunication within the company.

Other Resources (not included in the FARE webinar - just a relevant personal recommendation)

• Check out Snack Safely’s list. It contains manufacturers’ statements pledging that they will not substitute ingredients without stating the updated ingredient list on their packaging.

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