Updated: Sep 25, 2020
I wrote our story to share with parents who are new to the concept of wanting to heal allergies for their children from the inside out, especially if they had been told it wasn't even possible. I wrote the original version back in March 2012 - my daughter was exactly one years old - but update it regularly.
I'm sure many people wondered why I chose to breastfeed my infant daughter given the range of foods I could no longer consume once she had been diagnosed with multiple food allergies. It wasn't easy but then I’m not sure anything truly worthwhile ever is. I wanted to share our story so far, that is the one that belongs to my daughter and I.
Our beautiful girl was born in the autumn of 2011, while we were living overseas, after many hours of labour that resulted in an emergency
caesarean. On her second night, the ward night nurse, seemingly frustrated at my regular bell ringing to attend to my crying baby, gruffly suggested I give her formula to help her sleep since my milk hadn't yet come in. I had wanted to exclusively breastfeed for six months, but at that point – exhausted, sore and vulnerable – I tentatively gave my exhausted and reluctant permission. She showed me how to use a bottle, and my little girl hungrily guzzled 10mls of formula then promptly fell asleep. The next morning I gave her another 5mls but then my milk came in and for the rest of our stay, the other nurses encouraged plenty of nursing to establish supply and help her jaundice clear.
After we bought her home, I realised how committed I was to breastfeeding. I loved watching her grow and the physical closeness of connecting with a much wanted little girl. While it certainly wasn’t easy, it took me ages to get the hang of latching and positioning her and the right side hurt a lot for several weeks, but I persevered and grew more confident.
We noticed quite quickly that her skin was very dry, especially on her torso and face. Our midwife told us this was normal as her skin adjusted to being outside the womb. I tried all sorts of oils and creams but nothing worked for more than a day or two. Our daughter was alert and happy, putting on weight and sleeping well so we didn't question the advice and expectantly waited for her to grow out of it as everyone told us she would. But she didn’t of course, in fact it got drier and the skin on her cheeks started to crust and weep, and the warm creases behind her knees and arms began to become moist and red.
When she was four months old, we moved back to New Zealand and I took her to Plunket to get her weighed as it felt to me like she hadn’t grown very much. They and I became concerned when she hadn’t put on any weight over a month during a time most healthy infants do and immediately told us to see a doctor. I also saw a local GP for her skin around this time and was only prescribed a stronger steroid cream. I mentioned the possibility of a food issue causing her eczema, and was told not to be silly – told it was just something some babies had and they’ll just grow out of it when they’re ready if you're lucky otherwise bad luck – and she said allergy testing was out of the question for one so young…
Her words weren’t enough to shake an overwhelming instinct that I was beginning to feel, that every time I was feeding my daughter I was poisoning her. And so, as I listened to her dismiss everything I was saying, I became so disillusioned and frustrated. She even made me feel guilty for not just putting the creams on and questioning. I left the office rather frustrated but agreed to make an appointment for her second vaccinations which were slightly overdue... and so we did those.
Her first vaccination had been done in Australia and I knew I wasn't comfortable with them then but proceeded anyway. The day after her NZ shots, she had a massive eczema flare which landed us at A&E late at night with a distressed and itchy baby, and still the recommendations for different mixtures of steroid creams continued. However we touched on food a bit as well (and of course my concerns that the link between her eczema and the vaccinations was dismissed), and that really was the point I decided I was going to trust my gut, follow my emerging curiosity, rather than the doctors who up until that point had offered me very little other than scripts and very little in terms of direction or support.
I no longer got comments on how beautiful my daughter was. As a mother does, I just saw my lovely baby, but looking back at photos now I see she was strong and happy, but thin with a large head against a small frame, the skinniest legs and arms, swollen lymph nodes, cradle cap and weeping eczema on her cheeks.
So having had enough, I asked friends for recommendations for an open minded GP that was compelled to go deeper. And got a suggestion for another local doctor. Luckily this one immediately agreed to run the RAST blood tests which would identify and measure the levels of IgE allergy antibodies in her blood.
Her test results came through on the same day we weighed her again at Plunket to find she had started to now lose weight, 400g, a sign that along with the other symptoms, something was wrong. She had dropped from around the 25th to the 3rd percentile within 6 weeks and was deemed Failure to Thrive. The general view was now one of panic.
The RAST results that came through a few days later showed that she was severely allergic to dairy, eggs and peanuts – as well as cats and dogs. A food allergy is basically when the immune system overreacts to the protein in that food. Reactions can range from skin (hives, eczema) to digestive or behavioural and for some, anaphylaxis, a potentially fatal systemic shutdown of the body if not treated immediately with adrenaline.
We paid to consult with a private allergy specialist, one of the best in Auckland we were told and very expensive. He wanted me to stop breastfeeding, to just accept the best thing was to put her on an hypoallergenic formula called Neocate so we could bring her weight up quickly. I didn’t agree as it just didn’t make sense, to which he replied that I was likely in the 1% of women who just couldn’t produce sufficient quality breast milk. He also asked if my daughter was exclusively breastfed. At first I said yes, then I remembered about her formula in hospital. This was when he told me he had seen a pattern with his young patients – many had received formula early. I think then I felt the responsibility to do what I could to help my daughter. This was my first defining moment in our gut healing journey.
He strongly suggested we see the allergy dietitian connected with his office. And so we did. Again she heavily pushed Neocate onto us, and told me I needed to get my daughter “hooked” on it using sugar to help and when I raised my concerns and stated I wished to remain breastfeeding for as long as possible, she tried to reassure me I could look at re-establishing it later if I really wanted to (which even then I recognised as not being especially easy) and that we just needed to get my daughter’s weight up first. So I left their offices that day with some type of agreement. I had two weeks to try it my way, and if by the end of the fortnight, my daughter hadn’t put on 700 grams, I would agree to wean her onto Neocate.
Immediately I cut out those allergens from my diet and spent hours on the internet when my baby slept, reading and asking questions of others in similar situations. Not only did I have to avoid what we knew she was allergic to, but also soy and fish/seafood and tree nuts to reduce the risk my daughter would become sensitized to those as well. Emails were sent to grandparents highlighting the situation and I did what many do - I became preoccupied by the fear food would harm my precious baby.
I started to read about gut healing and it sounded great, like the perfect thing to do, but it also sounded overwhelming and the idea of eating fermented cabbage did not greatly appeal so I put it to the side as I got my head around the whole "living with allergies" thing. Improvement from this elimination protocol was not instant. A few days later I couldn’t see any improvement (if only I knew now it doesn’t happen that quickly almost ever), so I decided to incorporate what everyone had been telling me – but I would keep breastfeeding as well and just give her Neocate top-ups to help her put on weight. Everyone seemed relieved at my decision to mix-feed and she hungrily drank the bottles. My husband supported me no matter what I decided, but was also enjoying having the chance to sometimes feed her as well. I began to relax a little...
Over the next six weeks I started giving her more and more formula until she was up to three bottles a day, they went down easily and our breastfeeds became quicker and shorter and I was at a crossroads - what happened next would change everything. She got her first hive to a (her last) bottle of Neocate. On her forehead, immediately after the bottle and not having started solids yet or had any other changes externally, it was obvious what triggered it. And that triggered what I really had been looking for - a valid reason to cease the Neocate and embark on a journey to try to heal her body from the inside out. My breastmilk supply had been decreased somewhat so I replaced the Neocate bottles with mineral-rich organic free range chicken bone broth for her to sip on while also nursing as much as possible to try and increase my supply (which never really happened) - back then it must have looked pretty interesting when I gave her a bottle out with friends! So at 7.5 months, we started solids - with a gut healing focus.
Our whole lifestyle has changed considerably. For a year or two, I didn’t consume any foods that contained any traces of dairy, eggs, peanuts, tree nuts, soy, gluten, shellfish, most fish and many grains. It wasn’t always easy but I loved the feeling of being proactive, especially as we were beginning to see great results – not just the absence of eczema or other symptoms although seeing them disappear was great, but a real sense that she was beginning to thrive. We became advocates of natural immunity, using whole foods to heal and natural health in general. It wasn’t just about cutting foods out to avoid the eczema, it was also about working out what nutrients and other elements we could incorporate to continue to progress.
I ditched the dietitian after two sessions because I didn't see the value in arguing it with someone who was unsupportive and whose advice contained foods I was not going to feed my girl, and instead decided to work with a traditional foods nutritionist who educated me on the power of real food and who helped me stay motivated when it all just felt like too much work. Instead of my old life of eating out often, I spent all my spare time researching, shopping and preparing food. I was just committed to learning because everyone else who had a child with allergies just seemed so scared all the time, and I didn’t want to be like that - I knew there were no guarantees, but that I had to give it a real go because my observations so far were cautiously optimistic.
It was a big thing. There was no just one wee bite of chocolate or one little peanut. My cravings came secondary to her needs. I had designed our own gut healing protocol - it was based on GAPS but modified to include white rice cooked in broths or the occasional hummus etc. So not 100% perfect but it worked for us. Rather than GAPS, it actually ended up looking more like the AutoImmune (AIP) protocol that came out later. Even now I don't suggest as GAPS as the first stop when it comes to gut healing protocols but I recognise it has a place for some.
It took a few months for my daughter’s skin to become soft and supple, and that was the impetus we needed to keep going. The journey has continued from there, as I have followed my curiosity in wellness and discovering what that means in today's world and how I could apply that to our household.
The reality of raising a child in today’s frantic modern and toxic world where so much of our food is based around convenience and profit, and the idea that eczema/allergies/colic/reflux etc is "normal" and constantly trying to explain my unique approach to others was sometimes difficult and sometimes lonely. A big part of me was angry that I received little support from the mainstream medical system to keep breastfeeding… and yet another part is grateful for everything I learned about nutrition and health since because I had to fight for it. I met some incredibly knowledgeable people along the way whose input I’ll be forever grateful for, and those whose opinions taught me the importance of standing in my own truth.
Before long, my daughter was no longer underweight or Failure to Thrive. Her specialist knew we stopped using Neocate and he reserved his opinion other than to remind us there was no scientific research to show diet had any impact on allergy scores, but did the changes our very quick progress in reducing her RAST antibodies was almost unheard so, so that I should just keep doing what we were doing - so I did. We stopped seeing him, moved into the hospital outpatient system for annual testing but otherwise totally managing the resolution of her eczema and allergies on our own. * At one years of age, she reached the 50th percentile in both height and weight. All her RAST scores had dropped by around 80% (from recollection) and she was eczema free.
* At two years of age, her peanut RAST was now zero, her egg RAST was almost zero and she passed a baked egg challenge, her milk allergy score (originally the highest at 100+) had dropped by around 90%. My girl weaned at 2.5 years of age, it was a beautiful thing that happened naturally and with no resistance, and I am so grateful that I fought for breastfeeding her as long as we did. I know of many babies who truly needed hypoallergenic formula, but for us it wasn’t the right direction and I believe it was a big factor alongside the gut healing focus in our progress.
* At three years of age, her peanut RAST was still zero, she was eating eggs and her dairy RAST was just over zero. She started eating organic NZ butter daily after passing a baked milk challenge - we refused the later push to challenge straight milk as we had zero interest in introducing any other dairy products for as long as possible - this is an informed choice regarding the inflammatory nature of pasteurised milk products. Interestingly, she tested positive via Skin Prick Testing to both salmon and cashews around this time - we knew that salmon sometimes caused her issues with minor hives around her mouth sometimes after eating.
* At four years of age, she was just thriving with beautiful skin and sparkly eyes. The best news is that she had now also resolved all of her allergies - still dairy free (other than butter which she loves), gluten free, mostly grain free (other than white rice occasionally), junk free (as in no additives/preservatives/colours/flavours/HFCS), inspiring my #raisedonrealfood philosophy. She is eating butter, cashews, salmon and peanuts and eggs, so eating out is easier especially as the types of wholefood places we like to eat often use cashews so we didn't have to avoid. Her favourite foods include sauerkraut, kombucha, organic chicken, avocado, and fruit. She loves her treats, enjoying pretty much anything chocolate and things like Proper Crisps. Deprived she is not. She knows she eats differently but doesn't seem to mind, as long as when the other children are having something special, she gets an alternative. Our friends are amazing and are inclusive as much as possible. * At five, she is a happy wee spark who appears super healthy and loves good food, family, friends, adventures and has so much energy! She is well able to articulate thoughts on food and health and takes on concepts with ease. She still eats the same way but definitely has a big sweet tooth we often have to talk about! Starting school was interesting, she has started to notice she eats differently and prefers not to eat much other than fruit in school hours but eats a decent breakfast, after school snack and dinner. She has started to express an interest in eating cheese, so she's tried a small sample of buffalo feta and goats cheese and she was unimpressed!
I do believe all the effort I made, and all the lessons I learned, is what made these results possible when everyone told us it couldn't happen, and it's that insight which drives me to help others because watching your baby itch and be miserable is not a great place for any mother to be. I realised that the only way to counter fear and helplessness was to become empowered and educated, and I wanted to share it with others so that they could form their own path towards healing. My experience inspired the creation of four amazing Facebook communities that I admin and interact with members.
In 2013, I studied and graduated as a Holistic Health Coach with the Institute for Integrative Nutrition before launching the Raised on Real Food project. If you're interested in working with me, please know I really want to help. I've been where you are. My daughter's diagnosis took me on an incredible journey. I wasn't happy with the lack of clear direction or support from conventional medicine in addressing the root causes, instead the focus seemed merely on symptom management. I wanted more for her and us, and through that journey I was driven to help my daughter find freedom and healing through discovering the importance of certain wellness principles and now I share those with others! The concept of gut healing is becoming more well known which is fantastic however the path isn’t always straight forward and there are few guarantees or magic bullets, so seeking and accepting support, guidance and inspiration to find hope on that journey can be very powerful towards getting results - especially when it comes from someone who has been there, done that, who has come out the other side and gets it all.
You don't even have to live in New Zealand - I work exclusively on SKYPE and email, offering full consults and a monthly email coaching support program. More tools and resources are in the works as well. I empower clients to take control of their sense of wellness through their day to day choices and help identify meaningful and sustainable changes that can be incorporated to find freedom from eczema, allergies and beyond. This removes some of the guesswork, allowing you to better focus your energy, budget and time. Inspired by my journey, my mission is to help you resolve or reduce any feelings of frustration, fear, guilt, stress, lowered immunity, poor digestion and others, and help to replace them with a sense of confidence, empowerment and action. While dealing with some of these issues can feel very overwhelming at times, I can also help you understand these are also incredible opportunities to live healthier and happier lives as we found. Thank you for reading our story, and please know that if you're in that scared, hopeless and overwhelmed place right now - there are things you can do. You don't have to watch your child itch all the time, and you don't have to listen to them when they tell you the only thing you can do is put cream on it. But it takes that first step, and that my dear, is up to you. Love xx Maryana