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Making a big deal out of nothing

Guest blog from the lovely Tummy Wars….

The typical journey of parenting children with food intolerances

Parenting children with Multiple Non-IgE Food Allergies, otherwise and more commonly know as multiple food intolerances, is a bit like making a big deal out of nothing. To you, as the parent, it’s a ‘big deal’, and to most other people it’s ‘nothing’, and viewed as more of a frustration or a lifestyle choice than a medical condition. It’s not life threatening, the affects aren’t immediate or impressive, the diagnosis isn’t clear cut, the treatments are boring and the dietary restrictions are awkward. You become the neurotic mother, the ‘stressy’ parent and the difficult guest. And you know where they are coming from because until you were dropped into this mess you felt the same way about those ‘other people’ with food intolerances!

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And yet, as well as being the ‘neurotic’ mother you are also the mother with a baby who won’t sleep, who cries for hours and hours, who has horrendous nappy rash and horrible poo, who scratches at eczema until it bleeds, who vomits after feeds, who is grumpy most of the time, who isn’t gaining weight, and who eventually isn’t growing either. You’re told by the healthcare professionals and genuinely supportive and reassuring friends that it’s ‘a normal phase’, or ‘colic’, or ‘teething’, or ‘a bug’, or ‘just eczema’ or ‘character’, and you try hard to believe them. You spend your time trying to sooth a baby who can’t be soothed and traipsing to and from the doctors in a sleep deprived state, only to be dismissed (sorry, ‘reassured’) and told once again that there’s nothing wrong.

When weaning arrives it’s a disaster so by now you’re convinced that food must be the issue. However, you have no idea which food because you followed the genuinely good advice of offering lots of variety so it could be anything. Meanwhile it feels like your child is reacting ‘to everything’. You drive yourself potty trying to work out what it is so that your child will stop being grumpy and will let you sleep. The doctor has finally listened (or given in) so you’re now on the many-month-long waiting list for a paediatric allergy appointment with an ill child who isn’t keen on food and whilst waiting for the appointment you scour the internet and join Facebook Groups looking for answers. By the time you reach the allergy clinic you’re at your wits end and desperate for answers, support, and sleep. Instead your child’s skin prick tests are all negative and you feel like a neurotic mother who is either making it all up or not coping with being a parent. You leave feeling exhausted and beaten with the diagnosis of “just food intolerances” ringing in your ears but with the promise of a dietician appointment at some point in the future. When you finally meet the dietician they are lovely, and for once you aren’t made to feel neurotic, but at the same time they can’t fix the situation overnight and aren’t the life-saver you were expecting or needing.

And so it goes on, with you in a situation which feels like a VERY BIG DEAL and a label of food intolerances which sounds like ‘nothing’ and makes you feel like you must be making a mountain out of a mole hill. And yet, as you begin to learn about food intolerances you start to realise that actually they are a ‘big deal’. They can cause damage to the oesophagus through acid reflux, inflammation to the stomach lining and the gut causing pain, bleeding and malabsorption which in turn leads to malnutrition, fatigue and failure to thrive plus further abdominal pain and bloating as undigested food travels down into the large intestine. Nausea, diarrhoea, constipation, bloating and stomach ache are all common complaints. Migraines, eczema, asthma, IBS, arthritis, sinusitis, ME, hives and even autism have all been linked to food intolerances in some way. All in all, you learn that food intolerances lead to many symptoms which would make life miserable and challenging for anyone, and which can all negatively affect your child’s development if left unchecked.

With this new found understanding you become your child’s protector and fight hard for them to be symptom free and healthy. You spend hours keeping food and symptom diaries and weeks doing food trials. You work hard with your dietician to ensure your child is getting the calcium, vitamins and calories required for healthy growth and development despite the limited diet. You lean all sorts about food chemistry and the digestive system, which previously would never have interested you (and probably still doesn’t) and spend hours reading labels and researching where you can buy food products suitable for your child. You fight hard to find a doctor who ‘gets it’ and finally meet one who offers you a logical treatment plan and you find yourself learning about mast cells, histamine release and all sorts of conditions which need ruled out and have long names such as Congenital Sucrase Isomaltase Deficiency and Eosinophilic Gastroenteritis.

Before long, you finally feel on top of things and now it is you making a ‘great deal’ out of ‘nothing’, but this time in the form of food. You’ve accepted your child’s diagnosis and are learning to make all sorts from a limited stock of ingredients, avoiding things such as wheat, cow’s milk, corn or sugar and have starting to find alternatives. You know that simple rice can be processed into rice cakes, noodles, pasta, and flour and that bananas or lemonade can be used in place of eggs. Your cupboards are full of potato flour, tapioca starch, xanthan gum and chocolate sourced online and your child’s diet is expanding, despite their multiple intolerances, which feels like an absolute triumph.

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And as you start to get your head around it and work out the food groups that are causing problems you finally surface with a child who is increasingly healthy and happy, and who’s character becomes truly apparent for the first time, no longer hidden beneath a barrage of tummy pain and fatigue. And it becomes a joy to get to know them properly.

So if you are a parent somewhere along this frustrating journey then I want you to know that food intolerances are a ‘big deal’ and you are doing an amazing job in tackling them everyday for your child. And if you’re still in the thick of reactions and sleepless nights then keep going because you will get there eventually and when you see your healthy child emerge it will all be worth it.

And if you are one of the majority that doesn’t struggle with food intolerances then I want you to appreciate that they can be a very ‘big deal’ to those living with them. The neurotic mum with an unsettled newborn, the ‘stressy’ mum at the school gate and the awkward party guest are all fighting a daily challenge, which although minor in many ways, can have a big impact on their day-to-day existence. So please be supportive, and listen and listen some more as they drone on about food and the latest possible reaction. And most importantly, don’t dismiss their concerns but tell them to trust their instincts and to fight for their child because unfortunately that’s what it takes to overcome food intolerances in a society that thinks you are making a ‘big deal out of nothing’.

Thanks for reading and if you want to learn more about the conditions that cause sore tummies, find allergy friendly recipes, or simply hear more of our (rather boring) story then please visit my blog at www.tummywars.wordpress.com.

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About Us

Who are we?

Allergy Buddies are custom made products to alert everyone of a child’s allergy or intolerance.

Inspiration

Ever had an instance at a crèche, party, play-gym where someone has given your child something that made them ill? Yes me too. I’m sure like me you want to keep your child safe and that is where Allergy Buddies comes in. My little chap is so far intolerant to diary, eggs and we think citric acid as well as hayfever of every description and pet allergies. So I decided to create a brand that would allow a child’s allergy/intolerance to be easily identified by any carer, teacher and other parents and to help prevent those dreaded slips.