Hi, I’m Lindsey! Mom of two sweet kiddos. My youngest Zoey, almost 2 years old now, has multiple food allergies and has been diagnosed with Eosinophilic Esophagitis or EoE. Over the past year and a half, I have learned a lifetime of knowledge about food allergies, eating allergen-free, nursing through food allergies, and eosinophilic esophagitis. Our story to eosinophilic esophagitis diagnosis is sometimes hard to reflect on but is also a beautiful story of God’s willingness to work in the midst of a crisis, to always be holding you in the palms of his hands, and to use difficult situations to pull us closer to him.
I will never forget the nights I spent holding my sweet 7 month old baby girl as she screamed in agony, clinging to me and arching for hours because of something I had eaten hours before nursing her. I remember fervently praying for wisdom and direction while feeling completely helpless.
Today, I’m sharing the story of how my daughter was diagnosed with multiple IGE food allergies (at 8 months) and eosinophilic esophagitis (diagnosed at 11 months). It is a very personal experience and was very painful and eye opening. It has forever changed the way our family sources food, eats and views store bought packaged “food”. I share this story and will continue to share her progress and helpful resources in hopes that it will help other mamas deep in the throws of allergy-induced sleepless prayer-filled nights. If this is you, you are NOT ALONE and I pray that I can be a comfort and a supportive blessing to you, as many other mamas have been to me.
Bringing Zoey Home and the First Few Months
When we brought Zoey home she seemed like a completely normal babe. Great eating and normal baby sleep. But then SPLAT!
The spit ups started. And they weren’t just spit ups. I remember sometimes I would feed her, change her and get her back to sleep, only to lay her down and have her spit up a pool of milk all over her face and hair and bassinet and sometimes just be sleeping in it. It got to the point where I just had to rotate her from side to side in her bassinet because I ran out of clean clothes, endurance and sheets. I discussed the symptoms with her pediatrician and because she didn’t seem upset and was still growing well, she was dismissed as just a “happy spitter”.
Around the same time the eczema began. My son had had his fair share of eczema so it wasn’t a surprise that this new babe was having the same issues. We began the creams after bath time and continued on our way.
Then, at around 6 weeks, she got a rash all over her face. Again, the pediatrician dismissed it as “infant acne”. But it didn’t seem like the acne my son had experienced. It was thick and all over her face and neck. Again, I trusted the doctor and followed the steps he gave to clear it up.
Then, at around her 2 month well-check appointment it was like a switch flipped and things got so much worse. I remember taking her to her well-check appointment and she began screaming and sobbing at the doctor’s office. I clearly remember telling her pediatrician that this was majorly out of character and his asking, “Did you eat something new?” I didn’t think I had. We were sent home without 2 month shots for fear she was having a reaction or was coming down with something. Looking back this was really when it all started. The mystery colic-filled days where I spent hours searching my brain for what I had done differently after hours of screams. A few weeks later, near Christmas time, I had eaten a whole batch of chocolate chip, peppermint oreo cookies. Zoey seemed perfectly fine, woke from her nap and suddenly began sobbing uncontrollably. And it lasted for hours, like all day. At that point, I knew something just was not right and assumed she might have a dairy allergy intolerance. My son had also had problems with really creamy milky foods so I slowed the amount of dairy and butter I was eating.
As the months went by, amidst more frequent gassy night time wake ups, impetigo from horrible eczema, and flu season illnesses I was honestly just trying to survive. I had cut out most dairy and things just were not improving.
At almost 7 months old, I had taken Zoey in for a delayed 6 month old well check. Our family had just had a rough few months of the flu and then Covid and I was in no hurry to go to the doctor unnecessarily but I needed to discuss concerns with Zoey’s doctor. Her tummy just wasn’t right. My friends would discuss their children’s gas problems but she was experiencing these random colic symptoms and it seemed to be worsening. I couldn’t nail down what it was though. I should also mentioned that I had been desperately trying to introduce baby foods with absolutely no success. This kid hated food! During the visit, her pediatrician finally took me serious and informed me that I should try eliminating milk and soy because they were both known to be issues for infants and could lead to her symptoms.
Then He Administered The 6 Month Vaccines
The doctor then administered her 6 month vaccines and this moment was when everything in her gut just fell apart. I’ll never know if it was the combined amount of “things” in the vaccines or the Rotavirus vaccine itself or just her immune system saying “I can’t take any more of this!” but immediately following that visit my sweet girl sobbed and sobbed, and then threw up in her car seat on the way home. When we returned home her diaper was full of bloody diarrhea and the nights of endless crying and bloody diarrhea began.
I messaged the doctor so completely alarmed and returned to his office to have her diaper tested, where he confirmed that it was, in fact, blood. But there was no real advice on what to do. I was instructed to keep her hydrated and remove dairy and soy from my diet and keep them posted on her progress. They told me that it could take several days to several weeks to see improvements.
On day 3 of this hellish experience, I pursued a baby probiotic to try to calm her stomach. Little did I know that the probiotic was full of sunflower and that my girl, was in fact, severely allergic to sunflower. Months later I would find this out and it all made sense. I continued to give it to her over the next few days having no clue why things were getting worse.
I researched and prayed and began to become so much more aware of this new world of baby allergies. The best and most helpful resources I found were BY FAR on, the Fed Well Baby Hub and the Dairy and Soy Free Breastfeeding facebook group. These women knew their stuff and had way more information specific to baby’s allergies than any doctor I could talk to.
By the time we reached day 14, I had been eliminating milk and soy for 2 weeks and not feeding Zoey any baby food whatsoever but not seeing complete improvement. I was starting to see patterns in the fussiness and the foods I was eating. I started keeping a detailed food journal of everything I ate and I was convinced egg was also at play in her allergies. I was finally able to get her in to see an allergist. The allergist confirmed that she was allergic to milk and egg via skin test but soy was negative. I begged for help with her stomach issues and he said he would need to refer me to a GI doctor. The allergist tried to explain to me that IGE vs Non-IGE allergies were dealt with by two different types of doctors and how they were separate issues and I was completely and totally frustrated and confused.
I left the office feeling validated in my observations of the egg issues but completely confused on IGE vs. NON IGE allergies and completely unconvinced that soy was not an issue. I couldn’t imagine letting my babe continue to suffer and hoped and prayed that simply eliminating egg, milk and soy would be enough. But also, what in the heck was I supposed to eat to nurse this baby and, also, wondering why does she have so many allergies!?
As I continued to keep a food journal however, things started to become even more clear. It was more than just milk, egg and soy. It would be like this – a few good days with no issues, then I would eat something – black beans, a hot dog, whole wheat pasta, a vegan bowl from Chipotle – and oh dear goodness, my poor girl would writhe and scream for hours! The patterns continued to repeat themselves until I would discover the offending ingredient and eliminate it from my diet and finally we got to the point where my baby was not a screaming, writhing mess. In the end, I had eliminated milk, egg, wheat, soy, black and refried beans, chocolate, celery containing products (hot dogs, packaged meats), ground turkey (soy) and anything cruciferous. I was tired and hungry and had lost 10 lbs and still so incredibly confused as to what was going on.
Visiting the GI Doctor
Our referral visit to the GI doctor finally arrived mid-8 months and we met the doctor who would end up being Zoey’s best and biggest advocate. She listened and wrote down all the details of Zoey’s issues and provided us with alternative baby cereal, beef immunoglobulin to repair Zoey’s gut (which ended up having sunflower) and a referral to feeding therapy because my sweet baby just would not eat. “If things, don’t get better,” she said, “the next step would be a scope to see what’s going on internally.”
Over the next few months, we attended feeding therapy weekly. They were great but nothing stuck. My girl simply hated most food. She would gag and choke all the time. I don’t think a day went by that she didn’t choke. I spent hours daily trying to get her to eat. The therapist tried teaching her how to chew and using different spoons and methods but something was still not right.
Amidst this, I decided to test out feeding her sun-butter one day, a food I had been eating regularly. Her face, eyes and anywhere the food touched immediately swelled. It was after this episode that we were given serious instructions about how use her epi pen. A few days later, after encouragement from her allergist, I decided to simply wipe some peanut butter on Zoey’s back. Lo and behold, the hives began and she was allergic to THAT too.
As we approached 11 months old, my girl was 16 lbs and had been for 3 months. It was heartbreaking. I knew that God had gotten us through so much and had revealed so many issues but why couldn’t my baby just eat? To me, it was such a simple thing but yet she couldn’t do it.
We had made zero headway in feeding therapy and I was clearly not feeding her enough via breastmilk alone. Her amazing GI doctor could not believe that after being off milk, egg, wheat, soy, beans, celery, sunflower, peanuts and (oats and tree nuts) and feeding therapy sessions that we had no progress and recommended we have an endoscope done.
Eosinophilic Esophagitis Diagnosis
After the scope, the GI doctor posted the endoscope results and I quickly read through them and my heart sank. The report read that they had found eosinophils in her esophagus. I thought, “does that mean what I think it means?” I knew a bit about EOE from a family member who suffered from it. Each time I would share details about Zoey’s feeding issues, she would say, “I hope I’m wrong but that sounds a lot like EOE”. I would heartbroken but so incredibly thankful that we had an ACTUAL answer to what was going on! The GI doctor informed us that there had to be something else in my diet or Zoey’s that was still bothering her. She thought the biggest offenders would either be pea protein or chickpea. Two things we were both consuming as alternatives to ALL the foods that had been eliminated.
Answered Prayers – The 11 Month Miracle
With the huge burden of eliminating even more foods and calories from my diet, God provided for us in the way of formula. Finally, after months of being unavailable, the Abbott plant that manufactured sunflower free amino acid formula reopened and began shipping out emergency orders of their Elecare Jr. formula. An emergency order of 12 cans showed up at my door completely free. Talk about a time to praise the Lord! He had provided right in the nick of time. I began to introduce Elecare into Zoey’s diet while also eliminating all pea protein and chickpea from both of ours. My baby finally started to progress and eat real food. Suddenly she was starving and stuffing her face with food. It was amazing to see her suddenly have an appetite! She was also not gagging and choking. Within the month from scope to her first birthday, our baby girl gained 2 entire pounds! It was nothing short of a miracle!
Where Do We Go From Here?
As we have continued on this journey with EOE, I have continuously seen the Lord provide for Zoey and our family again and again. He has been with us from the beginning and has never left us. While this experience has been one of the most trying experiences I’ve ever faced, I’m grateful to Jesus for the closeness I have felt to him every step of the way and the miracles I’ve witnessed. 2022 was the first year that, despite all the challenges – sleepless nights and constantly baking, researching, purchasing new foods – I read my bible end to end! And the more I read, I thirsted for HIS word and reassurances. Now, every night, I pray that, if it is HIS will that he will heal her but if not that he will just continue to give us wisdom in knowing how to feed her and help her thrive and for her to know how much HE loves her.
How I Hope I Can Help Others
I intend to share more of Zoey’s updates here, as well as recipes, clean products and tips for allergy friendly living. My goal is to help Zoey and other children like her to experience a normal full happy childhood regardless of their allergies and EoE.