Navigating Eosinophilic Esophagitis (EoE): A Parent’s Comprehensive Guide to Symptoms, Diagnosis, and Thriving with Pediatric EoE

It has now been five years since my son received his official diagnosis of Eosinophilic Esophagitis (EoE), a journey that has profoundly shaped our family’s life. Also previously known as EE, this rare disease has taught us invaluable lessons, leading us to establish a unique rhythm for managing his condition. Given the public nature of this blog, I frequently receive inquiries about how we’ve navigated the complexities of EoE. My hope is to consolidate our experiences, insights, and the practical strategies we’ve employed into one accessible article, offering guidance and reassurance to other families facing similar challenges.

*Please note: This article details our family’s personal experience and should not be interpreted as the sole or definitive approach to treating Eosinophilic Esophagitis. Its purpose is to offer a perspective on how one family manages this complex disease, providing valuable discussion points for you to explore with your own qualified medical professionals as you determine the best care plan for your child. This post may also contain affiliate links, which help support our mission.*

Understanding Eosinophilic Esophagitis (EoE): What It Is and How It Impacts Daily Life

Eosinophilic Esophagitis, or EoE, is a condition that, while becoming more recognized, still remains a mystery to many. The American Partnership for Eosinophilic Disorders (APFED), an incredibly helpful resource for families navigating this journey, defines EoE as a chronic, allergic inflammatory disease affecting the esophagus – the tube that transports food from the mouth to the stomach. This condition arises when eosinophils, a specific type of white blood cell, excessively accumulate in the esophageal lining. This accumulation persists even after conventional acid-blocking treatments, leading to injury and chronic inflammation. The damage caused by these elevated eosinophil counts can make eating a difficult and uncomfortable experience, potentially resulting in poor growth, persistent pain, and significant difficulty swallowing, also known as dysphagia.

To describe it in simpler terms, especially for those unfamiliar with complex medical jargon, I often explain it this way: Beyond typical food allergies that affect the skin or breathing, my son’s esophagus itself experiences allergic reactions. When he consumes foods that act as triggers for these esophageal allergies, it causes damage and inflammation to the delicate tissues of his esophagus. This damage can manifest as severe pain, swelling of the esophageal lining, and even the alarming sensation of food getting stuck, a medical emergency known as food impaction.

Identifying EoE Symptoms: Our Son’s Early Warning Signs

The question of symptoms is, by far, the most common inquiry I receive, and it’s crucial to share our experience in detail, as early detection can be life-changing. Our journey began when my son was around two months old. After nursing, distinct large, red rashes would frequently appear on his cheeks, a pattern that immediately raised concerns. Alongside these visible skin reactions, his stools were consistently loose, often containing mucus, and he experienced frequent “blow-outs” after nearly every diaper change. He also exhibited severe, machine-gun-like gas. It’s important to note that while diaper issues can be indicators, they don’t always signify an underlying medical condition on their own.

Initially, medical professionals suggested he likely had an immature immune system. As he was exclusively breastfed, I was advised to embark on an elimination diet to pinpoint any foods in my diet that might be affecting him. Interestingly, my pediatrician recommended eliminating an unusual assortment of foods, not necessarily the common top-8 allergens: dairy, nuts, eggs, whole grains, citrus, corn, strawberries, tomato, and chocolate. I adhered to this strict diet for two weeks to clear my system, then systematically reintroduced one food at a time, starting with chocolate and working backward. Each food was consumed for three days; if my son showed no adverse reactions, it was deemed safe to reincorporate into my diet.

Through this meticulous process, we discovered he reacted to eggs, soy, and wheat. Consequently, I meticulously avoided these allergens throughout the entire year I breastfed him. As we gradually introduced solid foods, a new set of challenges emerged. He showed a significant disinterest in solid foods and frequently vomited after eating. The tell-tale rashes on his cheeks often reappeared, and his weight percentiles began to plummet. By the time we were finally able to consult an allergist, he was dangerously close to falling off the entire growth curve, a critical indicator of malnourishment and ongoing health issues.

The Definitive EoE Diagnosis: Our Son’s Journey at 14 Months

Receiving an official diagnosis of Eosinophilic Esophagitis is a precise process, requiring specific medical procedures. The only definitive way to diagnose EoE is through an Esophagogastroduodenoscopy, commonly referred to as an EGD or a “scope,” during which biopsies are taken from the esophageal tissue. These tissue samples are then meticulously examined by a pathologist to confirm the presence and accumulation of eosinophils.

At eleven months old, prior to his EGD, my son experienced an anaphylactic reaction upon his first exposure to dairy. Coupled with his history of needing eggs, soy, and wheat removed from my diet during breastfeeding, his allergist decided to conduct comprehensive blood work. The results revealed an alarmingly high eosinophil count in his blood. This prompted the allergist to inform us that he might either have EoE or leukemia, emphasizing the urgent need for a scope. It’s crucial to understand that while blood work can be a predictor, it does not always perfectly correlate with the cellular activity in the esophageal tissue itself. Therefore, tissue samples are always indispensable for an accurate diagnosis and to assess the specific condition of the esophagus.

Since allergists do not perform EGDs, we were referred to a pediatric GI specialist who conducted the procedure. Following the scope, the pathologist’s examination confirmed the presence of eosinophils, leading to his official diagnosis of EoE at 14 months old. This moment marked both a relief, finally having an answer, and the beginning of a new, challenging chapter in our lives.

Child’s Recovery After an EGD (Scope): What to Expect

Many parents worry about how their child will recover after an EGD, and understandably so. In our experience, my son handles the procedure remarkably well. I believe he possesses a naturally high pain tolerance, and these procedures, while medical, are not the most invasive or uncomfortable he could undergo. They are relatively quick, typically lasting only about 15 minutes while the child is under anesthesia. I’ve been told that the instrument used to take the tissue samples is no larger than the tip of a pen, which helps alleviate some anxiety.

The level of post-procedure discomfort can vary, depending on the extent of esophageal damage, the number of biopsies taken, and the time elapsed since the last scope. There was one instance where the doctor noted some bleeding after a sample due to the esophagus being particularly fragile. This resulted in my son vomiting blood on an empty stomach as he emerged from anesthesia, which was distressing but quickly resolved. Generally, he is encouraged to drink fluids before leaving the hospital, and we then transition him to soft foods for approximately a day. Apart from occasional Tylenol (which he sometimes doesn’t even need), he usually bounces back quite quickly. His resilience continues to amaze us.

Unraveling EOE Triggers: The Patch Testing Journey

Identifying the specific food triggers for EoE can feel like searching for a needle in a haystack, a process that is both complex and emotionally draining. Furthermore, diagnostic recommendations and practices have evolved since we first embarked on this journey. Nevertheless, I will share the meticulous approach we undertook to identify my son’s triggers.

Our allergist at Primary Children’s in Salt Lake City followed the recommendations from Cincinnati Children’s Hospital, recognized as one of the leading EoE clinics alongside Denver, to perform patch testing. This meant that at least twice a week, allowing for his back to heal between sessions, we would drive 45 minutes each way for appointments. The process began with prick testing to rule out any immediate, anaphylactic reactions to foods. If he passed the prick test, we would then proceed with patch testing. Over time, my son endured testing for more than 100 foods – I stopped counting after the first hundred. We were informed that virtually every single food he might ever consume needed to be tested. This was an incredibly long and arduous period, consuming the majority of his second year of life within a doctor’s office. He became so accustomed to the prick testing that it no longer phased him; he wouldn’t even flinch at the poke. He truly embodies the definition of a trooper, enduring these procedures with remarkable stoicism.

For those unfamiliar with patch testing, also known as atopy patch testing, it involves preparing a paste from the actual food (I was never provided with the exact food-to-saline proportions). This paste is then applied to small discs, which are taped securely to the patient’s back. A control disc containing only saline is also applied, along with discs for various foods. I often brought in bags of groceries containing foods not available at the clinic, and my allergist allowed me to prioritize which foods to test based on what I cooked with most frequently.

The underlying principle of patch testing is to observe how the skin tissue reacts to prolonged exposure to food proteins, attempting to mimic how the esophagus might react. These patches, secured with numerous strips of tape, remained on his back for two days. We even continued this rigorous regimen during the summer months, which meant my poor son couldn’t swim or bathe, yet he was incredibly disciplined about not scratching. Paradoxically, the most painful part for him was often when I removed the tape, as it would pull his fine back hairs. I dreaded these moments, and both of us would often shed tears. Those were indeed challenging months.

After two days, I would carefully remove the patches at home and document the skin’s reaction with photographs (some doctors require patients to return to the clinic, but our doctor trusted my judgment given the long travel distance). The skin was then allowed to air out for another day without bathing. Finally, on the third day, we would visit the clinic for the official “reading” of the patch sites. Any signs of raised skin, redness, or irritation were considered a “fail,” indicating a potential trigger.

If my son successfully passed both prick and patch testing, he was then permitted to try the foods orally. It’s important to remember that as a baby, he had already consumed many pureed fruits and vegetables. However, post-testing, we felt a renewed sense of confidence that these foods were “safer” and less likely to trigger his EoE and cause esophageal damage. Despite his previous diet, we meticulously re-tested EVERYTHING to ensure no assumptions were made, as whatever he had been eating previously was indeed causing damage.

To maximize each appointment, we would fill his back with as many patches as possible. Inevitably, there were always some “fails,” leading to many disappointing 45-minute drives home, often punctuated by calls and tears with my mom or best friends. For any food he passed, we would then introduce that single food into his diet once a day for several weeks, diligently monitoring for any reactions on his skin, in his bowel movements, changes in eating habits, or episodes of vomiting. This process was repeated for every successfully tested food.

Thankfully, we only encountered one food in the oral trial stage that seemed to affect him negatively: green beans, of all things. It caused severe constipation, so we simply classified it as a fail and ceased feeding it to him without proceeding to a scope. This highlights the importance of careful observation even after testing.

It’s worth mentioning that much of the current medical literature no longer widely recommends prick or patch testing for EoE, as many professionals feel it doesn’t consistently correlate with esophageal reactions. However, for us, I genuinely believe it was beneficial, particularly as it’s known to have a higher success rate in children than in adults. For instance, he had a severe reaction to mustard, a trigger we would have never suspected. After several years of avoiding it, we cautiously reintroduced it, and he suffered days of persistent throat clearing and coughing. That said, I recognize we may have been one of the lucky few who found it helpful, as most families didn’t find it particularly effective. While it would have saved us considerable time and hassle, we were following what was considered cutting-edge at the time, even if I often wondered who first conceived the idea of taping food to someone’s back!

Navigating Scopes with Multiple Foods: A Calculated Decision

The question of whether to scope for more than one food at a time is a significant one, and it’s a decision we approached with careful consideration. We understood this was a gamble, as a “fail” would leave us uncertain about the specific food responsible. However, through much prayer, relying on a mother’s intuition, and given our meticulous and calculated approach to food reintroduction, we felt confident by the time we reached foods he was eating regularly and was ready for a scope. We strongly believed he was doing well and would pass, simply seeking confirmation. At this point, we felt we had successfully weeded out the truly problematic foods. While there is absolutely nothing wrong with taking a slower, more isolated approach, our son’s diet was so restricted that we decided to take this calculated risk. It is, ultimately, a deeply personal decision that each family must make in consultation with their medical team.

Furthermore, we consciously try to avoid scheduling scopes during high pollen season. There’s a theory that swallowing pollen can also trigger an EoE reaction, so by scheduling scopes in winter, we can effectively rule out this environmental factor, allowing for clearer results and minimizing potential complications.

Key Pillars of Support: What Helped Us Most in Our EoE Journey

In retrospect, the most crucial elements that sustained us through this challenging period were unwavering support, extensive knowledge, and a strong sense of community. We were incredibly fortunate to have a cohesive medical team: an allergist specializing in EoE who worked seamlessly with a GI specialist, both affiliated with the same Primary Children’s Hospital, allowing for efficient communication and coordinated care. We also benefited immensely from an exceptional dietitian (more on her later) and a network of truly wonderful friends and family who offered empathy and a listening ear during my tearful drives home. Their support extended to willingly altering menus for gatherings, ensuring my son could safely partake and feel included.

Beyond our immediate circle, I actively sought out and joined two local support groups: one specifically for EoE, and a broader general food allergy group (Utah Food Allergy Network) that hosted yearly conferences. These groups connected me with other mothers who had walked this path longer, offering invaluable opportunities to bounce ideas, share strategies, and gain perspective. I also leveraged several online support groups on Facebook, which provided a broader audience for questions and a sense of collective experience. Crucially, my faith in God and a belief in His divine purpose and plan for my family and me were instrumental in navigating the numerous disheartening times and maintaining hope throughout our journey.

The Invaluable Role of a Dietitian in Managing Pediatric EoE

Without a doubt, I wholeheartedly recommend engaging a dietitian for Eosinophilic Esophagitis. However, it’s vital to recognize that not all dietitians are equally equipped to handle the unique complexities of rare disease diets. Our search led us to a dietitian who had extensive experience with pediatric patients on highly restricted diets. This specialized expertise meant she never questioned why my son’s diet was limited to just ten foods; instead, her focus was entirely on determining how to ensure he met all his daily nutritional requirements.

Her approach was meticulous and incredibly reassuring. I maintained a detailed food diary for three days, meticulously logging every single ingredient and its quantity for everything he consumed. From this data, she would calculate his intake of essential nutrients: iron, protein, various vitamins, and more. Subsequently, she would identify any deficiencies and devise precise strategies to address them, whether through multi-vitamins, iron supplements, fortified rice milk, or increasing the quantity of specific safe foods. It provided immense comfort and peace of mind to know that even with such a limited diet, he was consistently growing (she would meticulously weigh and measure him in just his underwear during each visit) and receiving adequate nutrition. This professional guidance was a cornerstone of our ability to manage his health effectively.

Addressing Feeding Tubes and Elemental Formulas in EoE Management

While my son thankfully never required a feeding tube, we came very close, and it’s a common reality for many EoE patients, especially those on elemental formula. When his list of safe foods dwindled to a minimal number, the recommendation arose to transition him to the elemental formula, a common intervention for many EoE individuals. At the time, I was fiercely determined – perhaps for reasons I now recognize as somewhat misguided – to spend countless hours in the kitchen preparing his food rather than having him rely on a feeding tube. My perspective has since evolved significantly, as I now understand the profound help these can offer.

Thanks to our dietitian’s expert assessment, we confirmed he was receiving adequate nutrition, and with constant testing and continuous expansion of his safe food list – from ten, then twenty, and suddenly fifty safe foods! – we were confident he would manage without a tube. Additionally, he was old enough and had been nursed for so long that we knew he would likely refuse the elemental formula orally due to its notoriously unpleasant taste, making a feeding tube the only viable option if we pursued that route.

I am grateful we didn’t have to put him through the feeding tube experience. However, an older friend who had severe eating problems due to her own health issues shared a perspective that shifted my understanding: if eating is such a torturous and painful process, a feeding tube can truly be a Godsend, alleviating immense suffering and hassle. I recognize there’s a significant stigma associated with feeding tubes, and I once shared that sentiment myself. But I’ve come to realize that for many, there is absolutely a time and a place where they provide indispensable support and significantly improve quality of life.

Ensuring Adequate Calorie Intake on a Restricted EoE Diet

A primary concern for parents of children with EoE on restricted diets is ensuring they consume enough calories for growth and energy. The simple answer to how we managed this involves a combination of dietitian guidance, creatively blending foods, and strategically adding healthy fats. Our focus was on incorporating anything that was extra fatty: full-fat coconut milk, chicken thighs and dark meat instead of leaner chicken breasts. Essentially, we operated on the opposite principle of dieting, aiming for calorie density.

As I’ve mentioned, blending his food was a game-changer. This method allowed us to combine nutritious ingredients like black beans, chicken, asparagus, and brown rice into a single sitting. As a toddler, he would never have eaten these diverse items individually, but as a puree, they became a comprehensive meal. Additionally, we consistently added at least a tablespoon of olive oil to his purees to significantly boost the calorie content. This proactive approach, guided by our dietitian, was crucial for supporting his growth and overall health despite his dietary limitations.

The Advantages of Early EoE Diagnosis: A Blessing in Disguise

Without a doubt, I am immensely grateful that my son was diagnosed with EoE at such a young age. One of the most significant advantages was that he hadn’t yet developed a strong palate or a social awareness of eating differently. Consequently, he didn’t grasp that certain foods were being “taken away” or that his diet was unique. Each year, as he grows older, he becomes more socially conscious of what his peers are eating, underscoring why his early diagnosis was truly a blessing in disguise.

Furthermore, as he was our first child, I had the invaluable luxury of dedicating ample time and energy to unraveling his condition and establishing an effective management plan before the arrival of our other children. This focused attention during his crucial early years laid a solid foundation for his health and well-being, a luxury not all parents may have, but one that undeniably shaped our initial success in managing EoE.

Determining EoE Scoping Frequency: A Balancing Act

The frequency of esophageal scopes for EoE patients can vary widely, with recommendations ranging from frequent to less often, depending on the individual case and medical team. We initially performed scopes approximately every six months, or whenever we felt we had a sufficient number of new foods to trial. As his diet stabilized and we gained a better understanding of his triggers, we transitioned to once a year. My son has now undergone six scopes, and as he grows older, he has started to express a desire for longer intervals between procedures.

Consequently, we are now aiming for a two-year interval between scopes, primarily to empower him to advocate for his own health. We believe it’s important to teach him self-advocacy, and ignoring his requests would be contradictory to this lesson. We would, of course, mandate a scope if his health appeared to be deteriorating. However, given his current stable condition, we feel comfortable delaying it. This is a highly personal and, notably, expensive decision, requiring careful consideration and ongoing communication with his medical team.

The Power of Support Groups for Eosinophilic Esophagitis

Absolutely, joining an EoE support group is something I wholeheartedly recommend. These communities can provide an invaluable sense of connection, shared understanding, and practical advice. However, it’s essential to approach them with a mindful perspective. While it’s completely natural and sometimes necessary to vent frustrations and share challenges, ensure you balance this with positive engagement. During such a demanding and emotionally taxing time, actively seeking out and embracing positivity within your life is crucial for maintaining your mental well-being and resilience.

EoE vs. Anaphylaxis: Differentiating Allergy Management

Understanding the distinction between managing food allergies that cause anaphylaxis and those that trigger EoE is paramount, as my son experiences both and we approach them with different levels of caution. For his anaphylactic allergens, we implement an absolute avoidance strategy, meaning absolutely no cross-contact. This entails using separate utensils, cutting boards, and preparation surfaces to prevent even trace amounts of the unsafe food from contaminating his meals, as such small exposures can provoke a life-threatening reaction.

In contrast, while I remain vigilant with his EoE triggers, accidental ingestion of trace amounts on a single occasion typically doesn’t seem to bother him. It’s crucial to emphasize that this can vary significantly from patient to patient, and often between adults and children, as symptoms can present differently across age groups. I’ve heard accounts of individuals experiencing impaction – food getting stuck in the esophagus – from a single exposure, while for others, it’s a gradual accumulation over several exposures before symptoms become noticeable. Some adults even report occasional “cheating” on special occasions without immediate severe consequences.

For example, my son should avoid pepper due to his EoE. However, if we dine out and a small amount of pepper is inadvertently sprinkled on his food – which often happens as people season food without thinking – we will usually allow it. Given how rarely we eat out, this infrequent, trace exposure has never caused him an issue. Conversely, if his food contained even a small amount of cheese, which is an anaphylactic allergen for him, he would require an EpiPen and immediate emergency room care. This distinction offers a “silver lining” for EoE: it’s typically not life-threatening or immediately catastrophic upon accidental exposure.

However, this is also a double-edged sword. Sometimes, a food might appear safe, but after consistent consumption, it gradually builds up in the system, eventually triggering EoE symptoms. This insidious onset means constant vigilance and careful attention to how one’s own body reacts are essential for effective management. It requires a dedicated and ongoing process of observation and adaptation.

Our Son’s Approved & Restricted EoE Foods

For a detailed breakdown of what my son can and cannot eat, I maintain a comprehensive list of his safe and unsafe foods directly on my website. This resource is updated as his diet evolves and new information becomes available, providing a clear reference for our family and others interested in our specific approach.

Easing Eosinophilic Esophagitis Flare-Up Symptoms

Fortunately, my son has only experienced one notable EoE flare-up where he felt food was truly stuck and caused significant distress. Occasionally, he might have some throat clearing, but it typically doesn’t persist or escalate. I’ve heard from other parents that over-the-counter medications like Ibuprofen, Maalox, or acid-reducers such as Pepcid/Zantac can help alleviate stomach pain associated with EoE. Additionally, swallowed Flovent (which we always have on hand due to my son’s asthma) is often mentioned as a potential aid for easing symptoms. However, it is absolutely critical to reiterate that this information is for discussion purposes only. These are definitely questions you must address with your own doctor, as I am not a qualified medical professional and cannot offer prescriptive advice.

Steroid Treatment for EoE: Our Family’s Choice and Perspective

Currently, many individuals, particularly adults, manage Eosinophilic Esophagitis by taking swallowed steroids. My uncle, who is connected to our family by marriage, is one such person. The premise behind this approach is that as the steroid is swallowed, it coats the esophagus, helping to heal the inflammation and damage caused by food or environmental allergens. This treatment route is often chosen as an alternative to, or in conjunction with, dietary changes, especially for those who prefer not to alter their diet drastically or at all.

For my son, at such a young age, I personally felt uneasy about the prospect of daily swallowed steroids. We had learned there was a potential risk of affecting the adrenal system, which influenced our decision to primarily manage his EoE through meticulous dietary adjustments. Given that EoE is a relatively new disease and the long-term effects of swallowed steroids are still being studied, I didn’t feel comfortable committing to that path without more definitive information. That said, if his condition hadn’t improved after comprehensive dietary modifications, our choices might have been different. EoE is such a complicated and highly personalized disease that it’s important to respect how other families choose to cope and manage their unique circumstances.

Following my son’s initial diagnostic scope, where the doctor provided images illustrating the severity of the damage, we did temporarily put him on a two-week course of a swallowed budesonide slurry. This involves mixing liquid budesonide with sugar to make it easier to swallow, though this method requires careful monitoring for candida overgrowth. This short-term steroid treatment was aimed at accelerating the healing of his esophagus, especially since at 14 months old, he was barely on the growth chart and eating very little. Although he was a remarkably happy baby – so much so that one wouldn’t suspect he had a serious disease – his refusal to eat was a clear indicator that he wasn’t feeling well. We realized he was likely so accustomed to feeling unwell that he didn’t know any different, compelling us to rely on subtle cues like food refusal to gauge his discomfort.

EoE’s Impact on Development and Catch-Up Growth

For our family, Eosinophilic Esophagitis did indeed affect other areas of my son’s growth and development. He experienced delays in crawling, walking, and speech. Consequently, we engaged in therapy for all these areas, in addition to feeding therapy. It’s challenging to definitively state, given his young age at diagnosis, whether these delays would have occurred irrespective of EoE or if his persistent discomfort significantly hampered his development. However, I can offer a profound message of hope and reassurance: he has since completely caught up in all developmental milestones. He is now thriving in mainstream school with no discernible difficulties, excels in sports, and performs well academically.

Therefore, if you have a young child who appears to be behind due to EoE or any other challenge, please do not despair. With dedicated effort, consistent support, and appropriate therapies, significant catch-up growth and development are absolutely possible. Our experience is a testament to the resilience of children and the power of intervention.

Advocating for Your Child When Doctors Don’t Take EoE Concerns Seriously

It can be incredibly frustrating and disheartening when you suspect your child has Eosinophilic Esophagitis, but your doctor doesn’t seem to take your concerns seriously. I always recommend starting with your pediatrician if you have health concerns. However, if you feel your concerns are being dismissed, and you strongly believe there are genuine issues at play, you should not hesitate to seek an appointment with a specialist independently. This is precisely what we did.

We were met with common reassurances such as, “Well, some kids are just small,” or, “He sleeps fine and seems so happy, he’s probably fine,” among other similar sentiments. But this is precisely why a mother’s intuition is so powerful and invaluable. I am immensely grateful that I pressed for answers and relentlessly advocated for my son, despite my personal aversion to confrontation. One strategy that significantly helped me be taken seriously was meticulous documentation. I began to rigorously journal his symptoms, maintained a detailed food diary (as mentioned previously), and always arrived at appointments with a prepared list of specific questions. When medical professionals observed that I wasn’t merely offering general complaints but was serious and methodical in my observations, it helped them recognize that there might be more to his condition than just a worried first-time mother’s anxieties. Documenting symptoms and questions demonstrates a serious commitment to understanding your child’s health and can greatly influence how your concerns are perceived and addressed.

Coping with Overwhelm: Adapting to a New EoE Lifestyle

The initial feeling of being overwhelmed by an EoE diagnosis and the daunting prospect of drastically altering your family’s diet and lifestyle is entirely valid and deeply personal. I was fortunate that this was my first child, which afforded me the luxury of pouring a significant amount of time into managing his condition – a fact I don’t deny. It absolutely consumed me, and I allowed it to affect me deeply.

One of the most profound pieces of advice I received was to allow myself to grieve the loss of foods. I vividly remember learning he could no longer have spinach, at a time when spinach was a massive trend – spinach smoothies were all the rage and it was lauded as a “superfood.” After he failed it on the patch test, I went home and just bawled. Crying over spinach! Who would have thought such a thing possible? Yet, every single food feels incredibly precious when they are systematically taken away, one by one. It’s a real loss, and allowing yourself to feel that grief is part of the healing process.

It’s crucial not to distract yourself from these emotions. Instead, learn to sit with them, allowing them to pass through you rather than bottling them up. This is easier said than done, and it’s a practice I continue to work on diligently. I believe one of the most effective strategies for managing the emotional toll of EoE is to find your “tribe.” If your immediate friends and family don’t fully grasp the complexities of your situation, seek out those who do. Leverage online communities like Facebook groups, search by hashtags, inquire at doctors’ offices, and connect with people, whether near or far, who can truly validate your experiences and offer understanding. I found an invaluable in-person support group in Salt Lake City, and attending APFED conferences, whether in person or virtually, can also be incredibly beneficial.

Above all, DO NOT STOP SELF-CARE. You absolutely must take care of yourself to be able to care for others. And one profound lesson I wish I had learned much earlier was the power of surrender. I only recently grasped its significance, and I highly recommend this podcast (and many others by the same host) to any stressed-out mother. It has profoundly helped me shift my perspective and reclaim agency, rather than feeling like a victim of my circumstances. Embracing self-care and learning to surrender what you cannot control are vital for long-term resilience.

Approach to Dietary Changes: Slow and Steady Wins the Race

When it comes to altering a child’s diet for EoE, my recommendation is a resounding “No!” to making too many changes at once. For his very first scope, our pediatric GI specialist explicitly advised us against changing anything in his diet. The rationale was simple: how could we accurately assess what was happening in his esophagus if we altered his food intake just before the procedure? This principle extends to all dietary modifications.

I often hear about families making multiple changes simultaneously and think, “Oh, no! How will you ever know what caused an improvement or a worsening if you change more than one variable?” This slow-but-steady approach is one of the most frustrating aspects, yet it’s absolutely critical for effective EoE management. For instance, if you undergo a scope, receive unfavorable results, and then simultaneously modify the diet and introduce proton pump inhibitors (PPIs) – which can sometimes help with acid reflux and EoE symptoms – how can you discern whether the improvement stemmed from the dietary changes or the PPIs? Isolating variables is key to understanding what truly impacts the condition.

Even though we occasionally scoped for more than one food at a time, we were always meticulous about introducing only one new food at a time into his oral diet. We closely monitored its effects before moving on to another. We only scheduled a scope when we were relatively confident he would pass, primarily seeking internal confirmation that what we observed externally matched his esophageal health. This internal confirmation is the only definitive way to be sure.

A vivid example of this meticulousness involved spinach. After his initial diagnosis, when his diet was restricted to about ten foods, we expected an improved scope result – but it was actually worse! I was devastated, fearing we’d have to eliminate all remaining foods. However, by carefully reviewing his food journal, we noticed he frequently developed rashes after consuming spinach smoothies. I then realized I had begun incorporating spinach into all his food blends (as he was still mostly on purees at that time). This explained the worsening scope: instead of having an offending food occasionally, he was consuming it every single day. Once spinach was removed from his diet and he was scoped again, his esophagus was clear. This experience underscores why detailed food journals are SO important; it’s incredibly difficult to track every detail and remember patterns over extended periods without systematic record-keeping.

Establishing an Initial EoE Baseline Diet: Our Strategy

Honestly, I don’t vividly recall every detail of how we initially decided which foods to cut out; much of it was doctor-driven, guided by his expertise. I remember the doctor asking about the foods he had consumed most frequently up to that point, using that as a baseline for discussion. From there, we tried to select a diverse assortment of foods to test for an initial “safe” list. This included items like rice for a whole grain, chicken for protein, black beans for another protein source, carrots for a vegetable, and apples for a fruit, along with a few other carefully chosen items. Thankfully, he scoped clean to these, establishing them as our foundational safe foods.

From this limited baseline, we embarked on the painstaking process of testing additional healthy foods that I believed would enhance his diet, appeal to him, and be readily available year-round. It was also crucial to test various spices. This ensured that if chicken, for instance, became a constant in his diet, we could at least flavor it differently to provide variety and prevent mealtime monotony. This systematic approach helped us build a sustainable and somewhat varied diet within his restrictions.

Maintaining a Limited EoE Diet: Strategies for Success

Getting a child to consistently eat a limited diet can be one of the most significant challenges for EoE families. For us, age played a crucial role. Since he was just over one year old at diagnosis, he was already accustomed to relatively bland foods and purees. This early timing is precisely why I dedicated so much effort and time initially to figuring out his diet before he developed the social awareness to notice how differently he ate compared to his peers. This window of opportunity made the transition significantly smoother.

A high-quality Blendtec blender proved to be a life-saver for us. It allowed us to combine all his safe foods into smooth, non-chunky smoothies or purees, ensuring he received comprehensive nutrition without encountering challenging textures or visual deterrents. This was particularly effective for sneaking in early green vegetables like broccoli and asparagus, guaranteeing adequate nutrient intake while bypassing potential sensory issues. Furthermore, having a wide array of safe spices has been incredibly helpful. This enabled us to create different dry rubs or simply sprinkle seasonings, making his limited food options feel more diverse and exciting. If you desire more culinary options, be prepared to fast-track food trials and undergo scoping as frequently as safely possible, always adhering to medical procedures.

The Importance of a Detailed EoE Food Journal

Keeping a meticulous food journal was indispensable for managing my son’s EoE. I created a simple, homemade Excel spreadsheet that served as our primary tracking tool. Each entry included the date, specific meal times, and a precise record of what he ate, including every ingredient. I would also note if he consumed a particular food more than once that day, helping us track quantities. Crucially, I tracked any type of reaction: skin reactions (like rashes), bowel reactions (such as diarrhea or constipation), throat reactions (difficulty swallowing or persistent throat clearing), or any instances of vomiting. An additional box was reserved for any miscellaneous reactions or observations we noticed. This comprehensive documentation allowed us to identify patterns, correlate foods with symptoms, and provide accurate, detailed information to his medical team, proving invaluable in making informed dietary decisions.

Empowerment & Hope: You Can Do This!

If you’re reading this, feeling overwhelmed and questioning whether you can truly manage Eosinophilic Esophagitis for your child, let me assure you: Absolutely. You can do this. It will undoubtedly feel incredibly difficult at first, but I promise you will adjust and find your footing. I promise your child can still thrive and lead a happy, fulfilling life. And I promise that, over time, this seemingly insurmountable challenge will become less overwhelming.

Grant yourself grace and allow for an adjustment period. One mantra I constantly tell myself and my son is, “We can do hard things.” One of the many profound experiences of visiting a Primary Children’s Hospital is witnessing the vast array of diseases and hardships other children face. When I feel the urge to cry about my son facing his seventh scope, I look around and see children missing limbs or unable to walk. This perspective immediately helps to reframe our challenges. He may need to eat differently, but he can run, jump, speak, and experience so much of life joyfully. I can genuinely say we lead a very happy life, and you can too. Hang in there! Good luck, my friends.

Resources: What to Feed Your Child with Eosinophilic Esophagitis

The desire to know what to feed a child with Eosinophilic Esophagitis is precisely why I started this blog. My goal is to keep the content streamlined, focusing primarily on recipes rather than an overload of informational posts, reserving much of the personal narrative for my social media channels. Therefore, I encourage you to follow me there and watch my stories, where I share updates and insights as they arise. Be sure to explore my recipe index, which offers over 200 free recipes, almost all of which are top-8 allergen-free. (A few recipes do utilize soy, as it is a safe food for my son.)

If you prefer physical resources, I have a published cookbook available for purchase on Amazon. You can find more details about it, including a complete recipe index of its contents, by clicking here or on the photo below.

I also offer an e-book specifically designed to cover the first two weeks of top-8 allergen-free dinner ideas. Those initial weeks can often be the most challenging, so I aimed to provide a comprehensive guide, including a helpful shopping list. Click here to access it, or click on the photo below.

Still Have Questions About Eosinophilic Esophagitis?

For ongoing support and answers to your specific questions about Eosinophilic Esophagitis, my husband and I regularly host live question and answer sessions on my Instagram and Facebook pages. You are always welcome to join us there and submit your questions. You can also try reaching out via email, and I will do my best to respond, depending on volume and workload. Additionally, feel free to comment below this post; often, other members of our supportive community can offer valuable insights. And, don’t forget to explore the various helpful links I’ve included throughout this article for further information and resources.

Here is a recording of a live Q&A session we conducted specifically on EoE, packed with nearly an hour of insightful information and answers to questions from other readers:

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