Allergy Support Group – so what goes on?

Thank you so much to Anuja, Sharon, Rich and Jenny for coming along – I was worried nobody would and that I’d end up sitting alone munching on my home made freedom cookies.

Thankfully, they came, and this is what one of them said, “Just wanted to say how much I enjoyed the meeting yesterday. Thank you very much for organising it.” Well, thank you for coming along!

Quite a few of you expressed interest but couldn’t make it, so I made notes and here’s what we nattered about. Firstly I set up this support group for purely selfish reasons. I felt I needed support and there wasn’t a support group in the area, so I bit the bullet and set one up myself. The Anaphylaxis Campaign have been great, they market the event to all their members and hopefully, over time the group will grow and we may even be able to find a local venue to host it when it gets too large for me to host at home (I can live in hope).

So who came along?

Amongst the group we had a few with food intolerances, multiple allergies and a few parents of kids with nut and nut and egg allergies. Egg is a really common allergy for many young children, and thankfully, one they can often grow out of and reintroduce to their diet. Peanut and nut allergies are not so simple, but kids can grow of out nut allergies. One of my guests was also a qualified dietician which was really useful – there are so many myths and confusions around what to eat to stay healthy when you have to cut out a major food group so it was reassuring to be able to quiz her and I learnt loads of new things.

Immunotherapy

I’m fascinated with immunotherapy and how it could help so many people with dust, animal hair and grass allergies and even food allergies, but which is so impossible to come by on the NHS. I also strongly believe that if immunotherapy or ‘allergy shots’ were available for all allergies we would go some way to stopping the allergic march. If we stop people’s bodies from being reactive I think it will mean they won’t develop more and more allergies, which does seem to be becoming an uncomfortable trend.

We talked about desensitisation treatment and the well known trials that have successfully cured a group of peanut allergic children at Addenbrooks Hospital in Cambridge. Sadly, treatment like this is still far too expensive to be available on the NHS anytime soon.

Jenny told us about the Breakspear Medical Group hospital which fights allergy and environmental illness in Hemel Hempstead. Never heard of it before so will be looking into that. On first impressions it looks quite pricey but they do offer immunotherapy treatment. Something I’ve been wanting to try for years. Why should this treatment only be available to those with lots of money to spend?

Useful replacement foods

Often food can be free-from one ingredient, but not another. When you develop multiple allergies or intolerances this makes shopping harder. It can also be disappointing when free-from products are made from a huge list of ingredients that you don’t recognise. How do you choose which to eat and how do you cook without some of these major foods easily?

Avoiding soya sauce – We talked about Braggs Liquid Aminos, which are a healthy alternative to Soya sauce and are available at all health food shops. Look for Coconut aminos – amazing!

Beetroot of carrot juice can be used to replace tomato in a bolognese sauce – inspired idea! I’ve been using Free & Easy Gravy but I love this idea. Just buy a bottle of pure juice next time you’re shopping and give it a go.

Nut free butter spreads – We talked about loads of foods that can be useful like the new peanut free butter spreads that are nut free. Eskal Freenut butter is available from Goodness Direct. These are made with sunflower seeds and are apparently really tasty and full of goodness. It could be worth trying if one of your kids loves peanut butter but the other has a nut allergy. It would mean they could both enjoy it without the nut allergic kid missing out or being potentially exposed to peanuts in your home. This could also be great for parties and schools if others are made aware of this product.

Keeping your kid safe at school

We talked a lot about how to keep kids safe at school whilst ensuring they are not singled out or excluded. Barnardo’s volunteered to help one mum to approach her daughter’s future school to help communicate the severity of her allergy to nuts and what needed to be done to ensure her safety at school.

They were extremely helpful, and though there was some resistance to the request to stop bringing in snacks including nuts from some people, it’s a journey to educate both parents and kids that it’s only whilst at school. They are all extremely lucky to be able to eat exactly what they want – so please be understanding and help a small child to just enjoy a normal and happy school life in safety. It’s not so much to ask.

Generally having a chat, a moan and sharing

We talked about eating out, something that is terrifying and rarely the enjoyable experience it should be. Everyone had had worrying and frightening experiences eating out, but awareness is slowly getting better and some places are getting more accommodating.

We also discussed getting supermarket free from lists. They often bring out new products that you wouldn’t know about if you didn’t read these lists. M&S was popular as they have some really tasty options that are free-from nuts and sometimes other allergens, but they also, don’t shout about it. Request their list of free-from for more information. Look out for their Beef in black bean sauce, Duck pancakes and lemon chicken meals. They always try to avoid unnecessary use of food allergens.

Most of all I just enjoyed the company. It was lovely to chat to people who understand. People who know what I mean when I crave not having to bring up my allergies wherever I go. The fact that I hate having to discuss anaphylaxis at almost EVERY meal out, because it’s impossible to avoid. Even when you phone and speak to restaurants before hand, you still have to speak to them again when you arrive, and remind serving staff again and again. Oh I long to order whatever I want without having to say a thing.

We shared great experiences, encouraged each other to keep trying and keep raising awareness. There can be some hostility from other parents when nut bans at schools come up. It isn’t easy handling this and turning it into a positive learning experience instead of a negative, unpleasant one. Remember most people don’t intend or mean to be offensive or cruel. It’s usually only because they don’t understand. Ignorance can lead to things said in haste so bear this in mind. Allergy awareness is still woefully poor so it’s our job to educate the masses. Bring it on!

We discussed so many other things in the two hours that we met for, in fact, we ran over to nearly three hours! We were having too much fun. Thanks again to all who came and we hope to welcome more to future meetings. Everyone is welcome. Whether you have kids with allergies or not (I don’t) or just have food allergies or intolerances yourself, please do come along. I need support! You’d be doing me a huge favour. Despite the supposed huge rise in allergies, I still often feel like one of very few amongst my friends and family who actually have life threatening allergies. Where are all those people with allergies? Where are they hiding? WHERE ARE YOU?

I’m also thinking of organising an Allergy Support Group #tweetup to coincide with the next Allergy Support Group. If you think this is a good idea and would enjoy taking part online but can’t attend in person, please comment below. If enough of you want to do it I’ll circulate details nearer the time of the #hashtag to use.