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.

Jungle Adventure – Stanway, Essex, UK

The Allergy Brothers conveniently only have a few days between their birthdays, and just less than two years between their ages.  This means they are cursed to have shared birthday parties forever!  Luckily, they get on very well and have shared friends and interests.

This year the boys’ party was at Jungle Adventure in Stanway, Colchester.  This is our favourite soft play centre.  It’s light, clean, and well-maintained.  There is a wide range of equipment so it’s very accessible.  Our only complaints are that the music can be too loud, especially if you sit at the sides, and that the Allergy Brothers might be aging out of Jungle Adventure.  Is it too much to ask for the Jungle Adventure team to open a centre for older children too?!

Birthday parties can be a bit sad for us, because everyone, except the birthday boys, can eat the party food.  The Allergy Brothers usually have to bring a packed lunch.  We were really pleased that the Jungle Adventure staff worked so hard to cater for them.  The Allergy Brothers each had a platter of ham and vegetable batons, with crisps and tortilla chips.  For dessert, they each had a bowl of fresh fruit.

Finally, we want to thank unflappable party host, Teni, who was so calm and efficient.

The Allergy Brothers definitely had a happy birthday party.

Easter Nests (GF, DF, Vegan)

The Allergy Brothers made these Easter nests with chocolate eggs at school, using our recipe.  It’s really great that the boys are always included in their class’ cooking.

Ingredients

75g margarine (we used Pure sunflower brand)

50g golden syrup

100g dark chocolate (we used Kinnerton free from chocolate)

100g breakfast cereal (we used gluten free flakes and Nature’s Path Munch)

mini chocolate eggs (we used Lindt dark chocolate mini eggs)

Method

  1. Line a muffin tray with cases.
  2. Melt the margarine and golden syrup in a pan.  Reduce the heat to low, add the chocolate, and stir until the chocolate has melted.
  3. Remove from the heat, mix in the cereal, and stir until it is all chocolatey.
  4. Spoon into the muffin cases and make an indent in the centre. Place an egg in each nest.
  5. Chill the nests until they are firm.

 

 

What the food is Xanthan Gum?

I recently had a complete baking fail.  I had a terrible migraine, but it was Cake Friday!  I knew the Allergy Brothers would be disappointed if I didn’t make them their Friday afternoon chocolate cake.  Unfortunately, in my bleary-eyed state, I reached for the Xanthan Gum packet rather than the baking powder packet; in my defence, they are the same shape.  Even more unfortunately, I noticed that the cake mixture had a very strange texture, but my overwhelmed brain couldn’t work out why so I baked it anyway.  The Allergy Brothers were not impressed to discover that I had basically cooked them a large, round, brown-coloured piece of chewing gum.  It was beyond horrible.  It did make me wonder “what is Xanthan gum?” though!  This is what I found out.

Is Xanthan gum a natural product?

No, Xanthan gum is a food additive, that is produced by fermenting a carbohydrate (a substance that contains sugar) with Xanthomonas campestris bacteria, then processing it.

Why is Xanthan gum used in food products?

Xanthan gum is often used to replace the effects of gluten in gluten-free baking.  Gluten is stretchy and gives gluten-containing baked goods a nice, airy texture.

Xanthan gum can also be used to add thickness, keep textures from changing, and hold ingredients in place.

Is Xanthan gum safe to eat?

It seems so.  Both animal and human studies  suggest that the worst side effects seem to be a bit of wind and laxative effects.  However, infants under the age of one year should not be given formula thickened with Xanthan-gum based products because of an increased risk of necrotizing enterocolitis (NEC).

Can Xanthan gum cause allergic reactions?

Potentially in those who are hypersensitive to their allergens.  Xanthan gum is a product of a reaction involving a carbohydrate.  Whether the Xanthan gum causes a reaction, therefore depends on what that starting carbohydrate is.  It could be corn, wheat, soya, etc.  Unfortunately, this won’t be marked on the packet.  If you think you are reacting to Xanthan gum then it might be worth contacting the manufacturer to find out what carbohydrate substrate they use.  If they use your allergen, then it might be worth trying a different manufacturer, who may use a different starter carbohydrate.

Is Xanthan gum vegan?

Again, it depends on the starter carbohydrate.  If the starter carbohydrate is corn, wheat or soya then yes, the Xanthan gum is vegan.  If the starter carbohydrate is lactose (made from dairy whey), then it might not meet your definition of vegan.  The only way to find out is to contact the manufacturer.

 

Jom Organic Candy (Vegan, GF)

Finding treats for the Allergy Brothers is surprisingly difficult.  Lots of sweets are flavoured with citrus or strawberry (both Allergy Bros no-nos) or have lots of artificial ingredients in.  The Allergy Brothers seem to be so sensitive to their allergens that they react to products synthesised from their allergens, for example Maltitol is an artificial sweetener that is derived from corn or wheat.  This is a long-winded way of saying “hooray for Jom candy!”

Jom Candy is gluten free, vegan candy, and, as a nice ethical bonus, is palm oil free too.  We tried the wild raspberry flavour (Ingredients – sugar*, invert sugar syrup*, water, corn starch*, glucose syrup*, acidity regulator (citric acid), concentrate of raspberry* (0.29%), natural flavouring, glazing agent (sunflower oil*, carnauba wax*); *=certified organic ingredients).  Well, I say we tried it.  I ate one and then the Allergy Brothers snarfed the lot!  They really liked these sweets.  The sweets tasted of real raspberries, rather than fake flavourings.  The best bit was the texture.  Vegan sweets can be a bit floppy and soggy.  The Jom sweets were more solid with a satisfyingly chewy mouth feel.

In summary, I will be buying these for the Allergy Brothers’ teachers to keep at school.  It is always handy for their teachers to have something stashed away for them, when someone brings in a treat for the class that the boys can not eat.  I might keep a bag or two back for me though…