Light at the End of the Allergy Tunnel

This is a good news post, and the blog I would have liked to read at the beginning of our journey. Things are going very well for the Allergy Brothers at the moment. It hasn’t always been like this. In the beginning, the Allergy Brothers were two very unwell, little boys. Allergy Wizard was so malnourished that he actually wore out his first pair of shoes because he just didn’t grow out of them. Everything changed, after the boys were finally referred to Great Ormond Street Hospital, and we had a path to navigate to get them safely back to health. The trauma and terror of the early days was replaced with the demoralising discovery, that every new food we tried to introduce, just added another food to the list of their avoided allergens.

We were told that the boys would grow out of their allergies by age three. Their third birthdays came and their allergies were still going strong. Then we were told that the allergies would probably be gone by the time they started school, but they both started school with long lists of things to avoid. We all started to give up on the possibility that the boys would ever grow out of any of their allergies, but it is finally happening! In the last sixth months, they have had successful trials of strawberries, citrus fruits and dairy.

In the last week or so, the boys have started eating products made with rice flour. So far, there have been no reactions. This is literally life changing for all of us as it opens up a world of free from products. The photo that heads this blog doesn’t look like much – a scrappily-made fish finger sandwich. For us, it’s a novelty. A month ago, making a fishfinger sandwich would start with activating yeast, ready to make the bread dough, while cutting the fish fillets into goujons. This did mean that the boys had a very healthy diet, but we now have more freedom. Meals can be quickly put together so I don’t have to constantly watch the time to make sure I have long enough to cook before they get hungry. We need to make sure things really are going well, but they might yet have their first meal out…

The Cost of Multiple Allergies

Last year, I saw an Instagram post by AllergyKid2006 that showed the impact of food allergies on budgets. Another family commented that it becomes even more expensive when there are multiple allergies. Those families live in the USA, but it certainly seems like we pay more to keep the Allergy Brothers safely fed in the UK too. I wondered how much the difference in prices is exactly, so I took a notebook along to my last supermarket shop…

Regular Food

Allergy Brothers’ Equivalent

Asda Soft White Rolls £1

Asda Fusilli 45p

Asda Semi-skinned milk 48p per litre

Fairtrade Dairy Milk chocolate (45g) 60p

Old El Paso Regular tortillas (326g) £1.49

Asda Golden Balls cereal (375g) 89p

Asda Sunflower spread 90p

Radox Kids Bath and Body Wash (400ml) £2.50

Pizza and Pastry Multimix £2.99

Eskal Corn Pasta £2.02

Ecomil Almond Milk £2.49 per litre

Kinnerton Free From Chocolate (85g) £1.30

Old El Paso White corn tortillas (208g) £1.90

Nature’s Path Munch cereal (300g) £3.89

Pure Sunflower Spread £2.35

Jason Chamomile Body Wash (887ml) £10.99

It’s shocking to see the differences in prices. This doesn’t include additional costs, such as petrol used to travel to larger supermarkets or the cost of electricity or gas to bake the bread mixes.

In the UK, gluten free foods used to be prescribed by doctors so people with Coeliac disease could access them for free. This has been restricted since December 2018 to just bread and mixes, although, in some areas, even this has been stopped. The Allergy Brothers have never been eligible for any financial help, as they have allergies, not Coeliac disease; and they are allergic to most of the prescribable breads anyway!

AllergyKid2006 linked to an American not-for-profit organisation called the Food Equality Initiative, which provides free from foods to families in need, who have allergies or Coeliac disease. As food bank use soars in the UK and the NHS stops prescribing safe foods, it seems likely that we are going to need a British equivalent to the Food Equality Initiative or see families really struggling to feed their children safely.