The challenges of delayed reactions; Jen and Elizabeth’s story

Jen and Elizabeth’s story

I’m Jen and my daughter, Elizabeth, is 5 years old. E has non-IgE (delayed reaction) allergies to dairy, soy, eggs, fish and beef. I can’t eat gluten so I had to factor this in whilst I was breastfeeding and when cooking family meals.

Can you tell us about your journey to getting a diagnosis?

E had stomach surgery as an infant and I had always assumed her digestive issues were related to that. She had acid reflux and was always in mild discomfort. It wasn’t until I stopped exclusively breastfeeding and started to introduce solids that I realised there may be something else going on. She had gone from being a content, happy baby on breast milk to a miserable, non-sleeping, distressed little babe on solids.

Luckily, we live very close to an amazing children’s hospital and she was still “on their books” after her surgery. So, our appointment with their allergy doctors felt relatively swift. Prior to her appointment, I had been keeping a food diary and cutting things out. This also helped narrow down the culprits.

E’s allergies were delayed non-IgE reactions which meant we didn’t have to worry about anaphylactic shock and so on. It did mean that it was a long and stressful process of trial and error to figure out what she couldn’t tolerate. She was prescribed a couple of different medications to support her while she adjusted. Eventually I found the right combination of food for her.

Essentially her allergies are managed by food exclusion. We slowly make our way up the various “ladders” and we do get further as she gets older. To be honest, I feel that she is so used to a life without fresh milk or mayonnaise that it is difficult to ramp up the motivation to experiment with the top stages of the ladder, particularly as she is now at school and the consequences can be very uncomfortable and long lasting.

The weeks and months after having a baby are such a vulnerable time for new mums, and allergies can make this especially challenging. How did Elizabeth’s allergies affect this period for you, and what would you say to help other mums in the same position?

Weaning was so miserable and lonely. I remember feeling anxious about the whole thing and quite jealous of parents who had fun introducing their baby to new foods. There was a point when E had to have medication 7 times a day. It was a complicated system of empty stomach, full stomach, 20 minutes before a feed, mix this one with water, that one with puree and so on. I remember it being overwhelming. It felt easier to stay at home than try and plan a day out. It was hard to just go with the flow and not always be wondering about allergies.

When we did make it out to a baby group, it was hard. I was tired, worried, and felt I had to be vigilant to make sure my crawling child didn’t take a fancy to another child’s discarded cheese biscuit. I remember being very self-conscious about coming across as highly-strung or neurotic. There’s a lot of mean stereotyping thrown at new mothers and it does not help!

To other parents in the same position, I would say start a food diary quickly to help you work out patterns. This can be good to take along to your first GP appointment to illustrate your concerns.

I wish I had introduced dairy-free formula while she was young enough not to realise it tastes bad. By the time I understood the extent of her allergies, she was too old to persuade to take a bottle let alone formula. I ended up having to breastfeed for two years. It was lovely in some ways. But it did have a huge impact on my life, ability to work, and indirectly my mental health and her bonds with other people. It would have been great if I could have figured out a way to mix feed early on.

Often it’s the little things we learn day to day as parents that are most helpful for others who are new to living with allergies. Can you share 5 things you have learned which might help to make life easier for other parents?      

1. If it helps you through the difficult bits, try to remember it usually gets easier as they get older. Even if they won’t outgrow their allergies, it is easier to tell what is having an effect. You can explain allergies to them and they can begin to do their own checks. Generally things feel a bit less precarious.
2. Little bodies are good at extracting the most nutrients from what they eat. Of course, do your best to offer a balanced diet, look for things which are fortified with vitamins and minerals as much as you can. But try not to despair over what they are not eating. 
3. On that note, my best tip …. A packet of Betty Crocker Gluten Free Devils Food Cake Mix and add nothing else but 315 ml soda water. Bake as a cake or as cupcakes. Practically identical to “real” chocolate cake, absolutely no fuss or hassle, and freezes well. I used to have a stash of cupcakes in the freezer to take along to parties or send into nursery. Job done. (Lots of the pre-packaged frosting tubs are dairy, egg, and gluten free, if you’re that way inclined. Which I definitely am). 
4. Children often don’t care about restricted diets as much as adults do. They will take their cue from you. This gives you the opportunity to let them know there is much more to life than cheese omelettes! It is helpful to find a way to gently remind adults around you that children can be happy with the food that is safe for them.   
5. Always take back up snacks. Always.

It can be really hard to think up meal and snack ideas when you are dealing with allergies, and I’m always interested in what other people are cooking to give me inspiration! What is Elizabeth’s favourite thing to eat?

I would be lying if I said I had the time, talent, or ingredients to make great snacks from scratch. Our favourite snacks are from the Eat Real range. They are crisps which are all vegan, soy, and gluten free. They’re not really a health food and are too salty for babies. But they are delicious, enticingly “grown up”, and – crucially – often available on trains or at corner shops for whenever you forget to abide by point 5 above!