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.

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.

If it’s important to you to stay up-to-date about FDA policy regarding food allergies, click here to subscribe to my newsletter. Don’t want to you to miss a thing!

The Basics of a Food Allergy Reaction

Histamine, whaddya mean?!

A scoop of peanut butter, a bite of yogurt, a piece of toast, or a sip of cashew mylk. All of these things may seem pretty benign, but to a person with food allergies these foods can mean an Epi-pen and a trip to the emergency room. So, how is it that the very foods that are supposed to provide sustenance and nourishment instead become life-threatening?

Let’s take a look inside the body, shall we? It all starts when an allergic person comes into contact with their allergen (ex. peanuts), either through the skin or by ingestion. For undetermined reasons, the body incorrectly labels that substance as a threat and your immune system starts creating tons of unnecessary drama. Kinda like what happens during any Real Housewives show.

The overreaction triggers the release of an antibody known as IgE (immunoglobulin E). These antibodies are special proteins that can detect particular food proteins. They sit on the surface of allergy cells found throughout the body and their purpose is to help defend the body. In an allergic person, they do this by detecting the food allergen and alerting the cells to pour out chemicals, such as histamines.

The histamines jump into action. Their goal is to help your body rid itself of the substance that's bothering you. Here, that substance would be your food allergen. The histamines initiate a process to get those allergens out of your body or off your skin. To do so, they use mechanisms that are symptoms of allergic reactions. For instance, they can make you sneeze, tear up, itch or make your mouth or tongue tingle and swell-- whatever it takes to get the job done. This is why we take an “anti-histamine” to get rid of allergy symptoms. The medication works to quiet the histamine response.

Speaking of allergy symptoms, it’s a good idea to know what they are and to be able to recognize when you’re experiencing them. According to the Mayo Clinic, food allergy symptoms usually develop within a few minutes to two hours after eating or coming into contact with the offending food. The results can range from a minor allergic response to a very severe reaction called anaphylaxis.

The most common food allergy signs and symptoms include:

• Tingling or itching in the mouth

• Hives, itching or eczema

• Swelling of the lips, face, tongue and throat or other parts of the body

• Wheezing, nasal congestion or trouble breathing

• Abdominal pain, diarrhea, nausea or vomiting

• Dizziness, lightheadedness or fainting

In some people, a food allergy can trigger a severe allergic reaction called anaphylaxis. This can cause life-threatening signs and symptoms, including:

• Constriction and tightening of the airways

• A swollen throat or the sensation of a lump in your throat that makes it difficult to breathe

• Shock with a severe drop in blood pressure

• Rapid pulse

• Dizziness, lightheadedness or loss of consciousness

Emergency treatment is critical for anaphylaxis. Untreated, anaphylaxis can cause a coma or even death. If you ever think you’re in an emergency situation, please do not hesitate to call 9-1-1.

*Hey, Kim K. is not a doctor or medical professional and cannot provide medical advice. If you think you are suffering from a medical condition, please consult a medical provider.