Our food allergy journey (and my path to IMU Nutrition)
MY JOURNEY TO IMU NUTRITION
I’m beyond excited to start the next chapter in my career, which is completely driven by my family and my passion for helping individuals and families navigate the world of food reactions and allergies. Even with years of experience and education in nutrition, actually getting the diagnosis and living the life of food allergies was a huge adjustment. I want to help people who have found themselves in similar situations develop and maintain a healthy relationship with food, which can be difficult while eliminating allergens. We’ll talk a lot more about these elimination diets, tools you can incorporate to help use food as nourishment, research on best practice, and all the other things related to food allergy; but first I want you to know more about who you’re working with and what our family’s journey looked like to get here.
WHO AM I?
Starting college just after turning 18, I thought I was going to be a pediatrician. I loved kids, I’d shadowed at a pediatric clinic, and it felt like the right fit. I started on a pre-med track, but quickly fell in love with nutrition (Well… there was a brief hiatus in there with one semester as a business major 🤫 Thanks to a great mentor, I made my way back to nutrition quickly!). I finished college and started a job right away at the University of Minnesota School of Public Health. I worked as a research assistant on a couple of studies exploring adolescent and young adult eating behaviors as well as the impact of family meals. (Look up Project EAT and Home PLUS to learn more about that research! The investigators on these studies are amazing.)
I absolutely loved this job. I enjoyed working with the data itself, but it was fun going into schools and homes to work with these families. It’s fascinating to see the different food environments, how things like TV shows and friend circles impact food choices, and the influence of convenience stores and restaurants near schools or neighborhoods. I earned my Masters of Public Health in Nutrition during this time, and then applied to a dietetic internship program. I was accepted into my first (and only) choice and spent the next year training with some talented dietitians at a large urban hospital before taking my RD (registered dietitian) exam.
I was hired at the hospital where I completed my internship, and spent the next 7 years working mostly in outpatient care. I also did coverage on the inpatient wards, but my heart was with the patients I followed in my clinic. This work led me to an interest in integrative and functional medicine - finding the root cause of a problem and looking at a person as the unique set of characteristics that makes them an individual versus just treating their diagnosis. A few years into this job, I married my husband, and we grew our family shortly after. I found that my current job was no longer a good fit for the life I wanted. My days were chaotic and stressful, and I wasn’t as emotionally available as I wanted to be for my family. Time for a change.
I made the terrifying switch from a very stable job with amazing benefits to a small functional medicine clinic with no financial benefits (but all the benefits I was looking for with flexibility, a positive work environment, and more control over my job). This clinic provided me an absolutely incredible experience. I worked with providers who genuinely wanted to help people and who cared about each other. The teamwork among the clinical staff was impressive, and the founder of the clinic always used the motto “Excellence Without Ego”. I will carry that with me forever. Helping others isn’t about always being right and immediately knowing the answer. It’s about working hard for your patients, being honest, and being open-minded to new ideas. The experience I got working in healthcare from this perspective was invaluable. I finished my Masters of Science in Human Nutrition and Functional Medicine while working on this team.
Despite how much I loved this clinic, I wanted more time and flexibility for my family. About a year into my time there, my husband and I had our second child together to make us a family of 5 (including my sweet and smart step-son). We’d also received the official diagnosis of egg allergy for our middle kiddo and our baby was diagnosed with milk protein and egg allergies. Our lives were busy, as all parents are!
FAMILIES ARE MY PASSION
While with this clinic, I got to work with all ages. I think my youngest patient was around 6 months, and I had a few in their nineties! I loved the whole job but felt particularly fulfilled while helping the families - from the mom-to-be who was struggling with fertility, to the working parent with small kids trying to feed picky eaters, to the empty-nester rediscovering what it means to take care of themselves. Every stage of parenthood comes with its own challenges, and many of them impact food - even for those who aren’t dealing with food allergy. Sometimes the focus is simply nourishing ourselves while juggling a busy schedule, other times it’s navigating a new diagnosis, and then there are times that our own relationship with food needs some love. Serving this group of patients took on a whole new level of meaning for me after having my first child (and even more so after discovering the allergy).
OUR FAMILY AND OUR JOURNEY
Our middle child, “H” was our first with a food allergy, but it took us a while to find it. As 4-year-old H would now say “We didn’t see that coming!”. Neither my husband nor I have any food allergies. We have some extended family (nieces, nephews, aunts, uncles, etc.) who do, but it certainly wasn’t something we were anticipating. H was snuggly and sweet, but he was a challenging baby. I chose to breastfeed, and he was constantly wanting to nurse. This was fine his first few months, but producing enough after going back to work was hard. He was comforted by nursing which was, at times, exhausting. It also made daycare stressful for all of us, and any time with Dad or a sitter was difficult. H also had skin issues - rashes, itching - which lead to interrupted sleep, and ultimately, a tired mom.
Remember that super sweet picture of newborn baby H? Here’s how that session really went 😉:
(You might be starting to notice some of what factored into that job change)
As a mom with a challenging baby, you spend hours researching what *you* are doing wrong. You might start to question if all your instincts are wrong, if maybe you’re just not really cut out for being a mom in the way you thought you would be. Of course everyone else has advice. “You’re nursing him too much”, “Don’t pick him up when he cries”, “Give him more baths”, “Give him fewer baths”, and on, and on, and on. In hindsight, many of his challenging qualities were probably rooted in his allergy.
DISCOVERING THE FOOD ALLERGY
The skin issues were the first challenge. H’s first pediatrician diagnosed him with eczema and wouldn’t refer us to a dermatologist without trying a steroid cream she prescribed (along with the warning of not to put it on his “hands or feet or anywhere with thin skin”). I had concerns that it wasn’t all eczema, but these concerns were met with resistance and dismissed as an overreacting first-time mom. I sent in multiple pictures through his electronic medical record, each dismissed as eczema. It took 3 months before we got a referral to the dermatologist, and when they called to schedule the visit, they said the wait would be another 3 months to get in. We weren’t sleeping, daycare was still challenging (after 4 months of being there), and he was constantly itchy with broken skin.
I managed to get him in on a cancellation after a few calls into the clinic, and at our first dermatology visit my concerns were confirmed. Some of what H had was certainly eczema, and she prescribed a much more mild cream to help manage it. The other pictures I showed her were clearly hives. Enter the first allergist.
This first experience was really disappointing. H was 7 months old and had only been on solids for about 4 weeks. Since I didn’t have any specific foods of concern at the time (he was breastfed and on donor milk, so we didn’t know exactly what he was exposed to on any given day), she only scratch tested for oat based on our observation that many colloidal oat lotions made him worse. Oats were negative, so he was diagnosed with chronic autoimmune hives, and she recommended we feed eggs and peanut butter daily. No further testing, no recommended follow up.
I don’t fully fault her. It’s common to do limited scratch testing with infants that young to avoid any unnecessary food eliminations, but my gut told me we didn’t have the full answer. Nonetheless, we followed her recommendations, and things got worse.
H refused to eat egg at home. I tried scrambled, quiche, fried, and he wouldn’t eat them. He continued to get periodic hives an had a persistent cough that wouldn’t go away. A couple of times at daycare he was fed egg as part of a breakfast sandwich and vomited about 15 minutes later. The eczema kept flaring and hives kept appearing. I started to think back to when everything started. H’s skin problems appeared about the same time I started getting an egg sandwich from a local coffee shop for breakfast most morning.
We went back to the dermatologist a couple months after the allergist visit, and I expressed concerns about eggs. I shared the timeline with her, my typical breakfast, his vomiting at daycare about 15-20 minutes after eating eggs, his refusal to eat eggs at home. She told us that even if he had an egg allergy, it wouldn’t make a difference in his skin. I was skeptical, but to remove all egg from his diet, it needed to be removed at daycare, and we’d need to stop our donor breastmilk. I needed more confirmation.
I found my own allergist for our kiddo. By this point, H is 18 months old. I expressed my concerns, shared the same timeline, the vomiting, the refusal to eat them. The allergist explained that vomiting fits into the diagnosis of an anaphylactic allergy if it is due to the egg and that it could get worse at any point. We skin test again – this time for egg (whole egg and egg white), milk, wheat, soy, and peanut. All are negative…except both egg tests. Clearly positive. We get an action plan, an epi pen, and dive into our new life. Daycare was well-versed in allergies and prepared to jump on board with us. We couldn’t be more grateful for their support.
We eliminated all egg from his diet. Do you know what happened? He started sleeping 3-5 hour stretches instead of 60-90 minutes. He was less fussy and less attached me to. His skin improved so we were dealing with small patches rather than a whole body of inflammation. The hives disappeared.
AND MORE FOOD ALLERGIES…PLUS FPIES
We got pregnant about 6 months later. I started wondering what to expect with this kiddo. Should we avoid allergens right away? Go in for testing before starting solids? Should I cut the foods from my diet again since I plan to nurse? Will I increase allergy risk if I do that?
When our youngest, “A” was born, he almost immediately started projectile vomiting after nursing. He quickly developed a severe diaper rash that would break open and bleed. I pulled both eggs and dairy from my diet right away and both problems improved. He was eventually diagnosed with IgE allergies to both and was also diagnosed with mild Food Protein Induced Enterocolitis Syndrome (FPIES) to rice and casein (we’ll address this topic more thoroughly another time). We were far more prepared this time around for how to manage the allergy life, though it had gotten more complex.
Through all our allergists (we’ve seen 4) and dermatologists (2 of those, too) we’ve never received a dietitian referral. I wanted to bring that option to families who don’t have access within their care system.
It's one thing to be a Registered Dietitian giving advice to others on avoiding allergens, but it’s another thing to be a parent trying to protect your child and living the reactions (or fear of reactions) every day. It’s dealing with schools and daycares, having to say no to cake at parties, explaining to people that it’s an allergy not a preference, being afraid of eating out. It’s a new lifestyle. A level of stress with even the most simple activities. Recently, my youngest ate a crumb off the floor of a local community business, and even though we got most of it out of his mouth, he quickly developed hives and a cough. One crumb.
WE LIVE THE FOOD ALLERGY CHALLENGES
So many factors can impact how we experience food allergies. The level of experience your allergist has with food allergy or FPIES, where you live, if you rely on daycare or if your kids attend school, how much your family and friends understand and support you, access to food, access to healthcare, mental health, other health conditions you have to manage, the severity of the reaction, and the list goes on.
We’ve lived in a large city with access to everything and a small town with limited food options. We’ve rented in homes we have limited control over, and we’ve owned houses we can modify. Our kids have been at established daycare centers with training and protocols, new centers who have never dealt with food allergies, and home daycare settings with minimal understanding (but a willingness to learn). We also had home daycares who wouldn’t take us on because of the allergies. We’ve had allergists and doctors who support us and explain their thoughts and those who don’t listen and dismiss our concerns.
I AM YOU
I know that frustration. I’ve felt that fear. I’ve lived that level of attentiveness and anxiety. I’ve made those environmental modifications. Now I’ve made it my mission to research and understand food allergies from a professional level, but I also bring you my personal experience with my own food allergy kids. Reach out if you need help, and we’ll figure out your new plan together!
