I wrote this a while ago, mainly as a record for myself, not sure if I’d ever post it publicly. Today I am posting it, because over the last few weeks, my daughter has had quite a few allergic reactions. They’ve happened mainly in parks and playgrounds. Never because of eating an allergen, but because she touched a surface that someone else had touched with food on their hands. In the grand scheme of allergic reactions, they were mild, because she didn’t have anaphylaxis. That said, they were pretty unpleasant. Her body itched all over. Her tongue swelled until she couldn’t close her mouth comfortably. Her little face and eyes swelled until her eyes were almost closed. Heart breaking to watch. Lots of people ask me about how we knew about the allergies (and my coeliacs diagnosis), so here it is…
Our families food allergy and intolerance journey started about 10 years ago, when I was diagnosed with coeliacs disease. The diagnosis came after a couple of years of being constantly sick, and losing a lot of weight. A relative had just been diagnosed with coeliacs, so I mentioned it to my doctor and got tested. Goodbye gluten! It was tricky at first, but became manageable. I still miss egg noodles and crunchy baguettes though! Sometimes I dream about bread rolls… Sigh.
Things got more complicated when my daughter, Sylvia, came along. At 3 months, she was diagnosed with a cows milk protein allergy (not just lactose, all dairy, in all forms). The way we found out, was because she had blood in her nappies (this is a very scary thing to find, I might add), and her growth was slowing down. After medical advice, I cut dairy from my diet and continued to breastfeed, but she was still struggling with terrible eczema. At 7 months, I noticed she had hives on her face one morning. I didn’t think much of it at first, but after it happened a few more times, I made the connection. My son had been kissing her after eating his peanut butter on toast. We stopped eating peanuts around her, and went back to the doctor,
At 8 months, she had her first lot of allergy testing, which was a fairly unpleasant process of holding her while she was scratched 40 times with a pin. The tests revealed allergies to most tree nuts, and confirmed the allergies to peanuts and dairy. She also tested allergic to Lupin, which is a legume used in a lot of gluten free foods. I cut the allergens out of my diet, continued to breastfeed, and her skin cleared up. No more eczema! We moved on carefully with more solid foods. She was still breaking out in hives all the time, but we couldn’t figure out what it was.
Back to the allergy specialist at 10 months. Our dietician recommended the RPAH elimination diet. It was really, REALLY restrictive. As I was still breastfeeding, I had to do it too. No tea! Not even herbal tea! Not fun, and at times, quite depressing. We were managing though, and I was experimenting with different recipes that met with the restrictions of the elimination diet.
One afternoon, I made myself a lentil salad. My daughter wanted to try some, so I gave her a few lentils to try. She pulled a face, and spat them out. Immediately, she started breaking out in red spots on her face. What was going on? We were eating food from the “safe” list! Next she started wheezing. She sounded like Darth Vader. At first, I thought she was playing. Just making a funny noise, because still, it didn’t click. Surely it couldn’t be an allergic reaction? Who’s allergic to lentils for goodness sake? Well, as it turns out, my daughter is. Off to the hospital we went.
I can’t quite describe how terrifying an anaphylactic reaction is. I knew how quickly it could progress to her not being able to breathe. At that point, we didn’t have an epipen (an automated adrenalin injector). We rushed to the hospital, and she was taken straight in to emergency. She was given medication to open her airways, and then we stayed at the hospital for another 8 hours. Sometimes there can be a secondary reaction, once the medication wears off, so you need to be observed in hospital after anaphylaxis.
The next week, we went back to the allergy specialist for more tests. The tests confirmed a severe allergy to lentils, plus we added chickpeas to the list. She was prescribed an epipen, and her specialist recommended she avoid childcare, as she still had allergies emerging.
We continued with the RPAH elimination diet, and after some food challenges, confirmed intolerances to salicylates and glutamates. The big surprise, was when I started reacting as well – to amines in my case, just to make things more complicated. We stuck with the diet for another year, occasionally trying to reintroduce fruit and vegetables to expand our dietary options (when the only fruit you can eat is pears, it gets old, really quickly!). We’ve managed to introduce most fruits, being careful not to have too many at once. Not eating most veggies for a few years has made things difficult though – I now have a very fussy eater on my hands!
Last year we tried to introduce green peas. Another reaction. Back for more tests, and we confirmed that Sylvia is allergic to peas. Peas! Crazy, right!? And then we added pork to the list as well.
After nearly 3 1/2 years on this crazy food journey, we are now doing really well. My daughter can now eat fruit (hooray!), and is growing out of her almond allergy. I have found out why I get so many migraines (thank you amines). Our household is free from nuts, gluten, dairy and most legumes (let’s face it, I never really liked lentils much anyway). We can still have soy (yay for soy lattes!).
Life has changed. We can’t really eat out as a family. It’s just too risky. My husband and son sneak out for “real” icecream once a week though! I haven’t gone back to teaching art classes at the art gallery, as we still don’t have the ok for my daughter to go to childcare. But we’re embracing the chance to play around in the kitchen. To get creative with what we CAN eat, rather then worrying about what we can’t. I’m having fun working from home, and exploring avenues that I may not have done otherwise. Best of all, my tiny girl is finally back on the growth charts, is meeting all her milestones, and is her gorgeous, cheeky self. All stuff to be thankful for!