The cost of Feeding My Intolerant Child

Today we were running low on ‘Zac foods’. Our local Tesco, seems to be stocking less and less in it’s Free From section at the moment and our Waitrose is not much better. Sainsbury’s has by far the widest stock on shelves and some brands I have not seen anywhere else. So despite sending Tom to the supermarket yesterday for a ‘big shop’, I still had to go today.

Here is the list of items I bought and how much they cost.

Natures Path Gluten Free ‘O’s – breakfast cereal £2.75

Doves Farm Gluten Free Stars – breakfast cereal £1.94

Free From Ciabatta – 2 x small bread rolls - £1.80

Free From Digestive biscuits - £1.50

Free From Chocolate Coins (for his Christmas stocking) - £1.49

Orgran Outback Animal biscuits – £2.99

Free From Rich Tea biscuits - £1.39

Small bag of Free From Pasta - £1.50

Dietary Specials Gluten Free breadsticks - £2.49

Alpro Creamy Peach Yoghurts pack of 2 pots - £1

Alpro Creamy Cherry Yoghurts pack of 2 pots - £1

Gluten Free/Dairy Free chocolate spread - £2.29

Free From Spaghetti - £1.50

Small loaf of Genius brown bread - £2.90

Free From White bread rolls pack of 2 - £0.63

So that is almost £30 spent on special foods. I know it looks like a lot of snack foods. He won’t consume these all in a week, remember not all stores stock everything, so I tend to load up when I see a bit of variety. I do limit his snacking but when you have a child who cannot eat dairy or gluten, snacking is tricky. Active 3 year olds are hungry a lot and need extra fuel – so I do let him have the odd biscuit.

So what else can I give him? Certainly not cheese and crackers. Zac’s favourite snacks are raisins, grapes, apples, bananas and pineapple. All very healthy but you can’t eat too much fruit in one day. Especially if you have a sensitive tummy. It is not great for your teeth either, but thankfully he only drinks water and I always make him drink after snacks.

He also quite likes rice cakes and his other favourites are the gluten free breadsticks. And from time to time I believe he deserves a little something exciting and special, hence the little stock of treats I bought him. I do try and encourage him to eat the yoghurts. Being a dairy free child, getting protein and vitamins in him is tough, so the soya yoghurts are a great option – however, Zac likes to (and has been advised by the dietician to) eat 3 a day - at 50p each for his favourite brand and variety I am spending £1.50 a day on these alone.

I make all of his meals from scratch, so although it looks like there are a few treat items here, be assured the rest of his meals are rice, potato or gluten free pasta dishes with a lot of freshly cooked vegetables and some meat and fish cooked into the sauces. Ironically, as fish fingers and sausages were off the menu for a while, he is very wary of them and cannot be persuaded to try them – even though I have now found some very good quality alternatives.

So consider my weekly bill, food for the rest of us, a lot of the foods listed above, and on to top of that I would say Zac consumes at least one bunch of bananas a week himself, one punnet of grapes and half a bag of apples – and his sister and the rest of us double that. I know I get through bags of vegetables too, particularly carrots. So you can see why I feel so strongly about raising awareness of the challenges facing parents with food intolerant children.

It is so hard to get enough food in them to keep them well. Often they are fussy children because they are aware so many foods make them ill and they are understandably not very adventurous when it comes to trying something new. It all costs a fortune and you end up driving all over the place to track it down. Then often when you have stocked up you find you can get through several loaves of the bread (around £3 each) in a week, because the slices fall apart as you take them from the packaging. You get the biscuits home to find them smashed to pieces, same goes for the breadsticks and the packets of pasta are smaller than standard yet often twice the price.

It feels unfair that the supermarkets feel it is ok to charge between twice and three times the price of these foods as the standard foods. Many people out there have intolerances, really genuine ones, yet it is only confirmed Coeliac sufferers that are entitled to any assistance with paying for their food.

Yet every time we meet a dietician to discuss Zac, they are far more concerned as to how we cover his dairy intolerance. There is a Junior Soya milk which is fortified with adequate levels of B vitamins, C and D, as well iron, protein and calcium – he only has it on his cereal and will not touch it as a drink. The yoghurts are an even richer source of these vitamins etc and thankfully he loves them.

So to hear a dietician say it is crucial for his bone and brain development and general wellbeing to get adequate levels makes me wonder why it is only dairy intolerant infants (under the age of one) that receive any subsidised dairy replacements. Well I guess we all know the answer really, the cost to the NHS would be unmanageable. If the figures are to be believed, many more children and adults are (worryingly) being diagnosed with intolerances and the value of the market is in the millions – so why can’t the supermarkets show a tiny bit of benevolence and bring the prices of the ‘special’ foods back in the line with the ‘normal food’?

I suppose that is as likely as the NHS doing anything to help, but I can dream! And perhaps I can do something too? Shall we all write to and tweet and generally bother the supermarkets until they start to listen. Perhaps we can shame one of them into taking the moral high ground and actually championing our cause rather than robbing us blind every time we buy a loaf of their overprice and unusable bread! I seem to have the ‘ear’ of the press at the moment, so I will see what I can do.

15 Replies

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  • Hi - There's certainly a long list of items there for your son so at least he's a good eater. :)

    Just a thought but have you asked for some of these on prescription? Are the prescription's not free for children? If so this would perhaps cover bread items and crackers, etc which is a little help.

    Not sure whether this will be of any help, but this may be worth looking at and also save a little money. Have you looked at Amazon Gluten Free Store online? Some things are sold in packets so it would be, in some instances, a month or so supply. Often for regular orders every three, six or nine months of purchase of an item the price drops and there is no postage (check under the price and you will see another which says subscribe and save - I do not think it is a fixed time so can be amended as and when you like):

    amazon.co.uk/b?ie=UTF8&node...

    Not sure if your son is a fan of Nutella but at Morrison's it is £1.50 for the medium size jar (gluten and dairy free).

    Just a little extra note: I've noticed the Tesco store by us completely cut back the gluten free stock items - they moved the section to another part of the store and then one by one, items began to disappear. I'm not keen on the cereals as they have too much sugar in for me personally, but for those who rely on them, they have been cut down to two items - one coco flavour crunchy one and another flake ... the only one I used to pick up the rice puffs (Kallo) are no longer available.

    Gluten free grocery links may also be useful:

    gluten-wheat-free.co.uk/pro...

    Well not much help really - perhaps some of the other mom's may have a few more ideas!

  • morrisons do a gf cerel witch is 1 50 a box cornflakes and i get cerel on pescription too they have pizza bases ect too so i would ask your doc

  • Depending which PCT you are with you can get a lot of the basics on prescription which means they would be free ! Your Doctor won't tell you because it costs them money but if your children are properly diagnosed they get paid extra for them anyway, see the practice nurse they normally are very good at getting what you need.

  • I have found that some stores no longer have a "Free from" freezer section, and things like Fish Fingers are stacked with the ordinary ones,pies are treated the same, chilled sausages are very difficult to spot as the wrapping is very similar to ordinary ones, although Meat free stuff has a dedicated shelf.

    the problem with children is that they need to fit in-- so making your own biccies or having him eat something completely different at nursery will make him stand out, ( there was a girl at my childs play school who had to have cheese and all the other chilgren quizzed her about it and told their mums, who thought her mum was stuck up and ordinary biscuits were not "good enough")

    humans have a penchant to be merciless on the different

  • After many years i gave up on the prescription foods as my gp would no longer stock at the surgery pharmacy as it cost him 50p each item, this means a special drive of 10miles round trip to collect at Boots, then they would only allow 1 loaf per prescription ie £7.45 or whatever the current price is.i said enough! I am not paying that much for one tiny loaf! I used to have a season ticket but used it so little i was loosing a lot of money. So i just manage on rice products and potatoes, i use other flours like gram, soya. I too have noticed many GF products being dropped- not profitable enough i guess, but less treats to be found in supermarket. I have just discovered our local farm shop has a great range.....indulgence for Christmas!!!

    Thanks for tips the rest of you..esp amazon link

  • Hiya, I totally sympathise with you. I have been GF, nut free and dairy free for over 10 years now and receive no assistance from my GP, even after several requests!

    I resorted to making most of my baked items myself and having homemade breakfast bars instead of cereal. I however have the time to do this, and with young children it can be hard to find spare time, I know!!!

    I would try shopping on line to get a decent selection, my favourite site is

    goodnessdirect.co.uk

    Happy to help hassle supermarkets to offer a more reasonably priced selection of Free From foods.

    Sounds like your son is a very lucky boy to have such a caring Mum, keep up the good work!

  • Hi, I am new to this website and found it by accident. I am G.F. and have recently been told that I am lactose free also. I was given several booklets by my dietician at UCLH called the 'Fodmap' Diet. These cover G.F. Lactose and Fructrose free information. They cover

    suggested replacement foods, where to buy them i.e. supermarkets and who stocks what. I have found them to be invaluable. If you have trouble tracking them down, come back to me

    and I will try and get more information for you. In regards to bread, the only one I will buy is

    a whole loaf bought at the bigger Tesco stores. I slice it and then freeze it and it does not break up into pieces. I have also found that in Tesco, the G.F. frozen foods are kept with the

    vegetarian ones.

    I hope this helps.

  • Hi, both myself and my daughter are GF. I am also Dairy Free, Fructose free and my daughter is yeast free. I also didn't want my daughter missing out and started buying snacks and bread etc but realised thats not always the best option anyway as they are generally full of sugar and additives.

    Cost is a big problem and it used to cost me a fortune but now I make most things myself. I am also a busy working mum so on a Sunday morning, we have a cooking session and I make bread, cakes etc in individual portions so that I can freeze them and she always has something on hand. Healthier and half the price. And more variation. Sometimes I even make enough for two weeks.

    It didn't happen over night. It takes time to find quick, easy recipes but I know only spend as much as I did before and my daughter enjoys most things like her brothers.

    Good luck

  • One way I really save money is to buy my bread using my prescription allowance. We all have a certain number of units per month that we are entitled too, whether or not the Doctors like it. Having tried a lot of the GF foods on prescription, i have to say most of them are not very nice. But, Genius bread is great. You can get white or brown loaves, sliced or unsliced.

    so here's how to save money.

    one loaf of Genius in the shop is about £3

    Go to NHS website and buy a pre-paid prescription card. This costs about £10 a month, but then every prescription you need within the month is covered by the £10, you just show your card in the pharmacy. I guess for a child you don't even need this as prescriptions are free?

    To order Genius bread, you need the PIP code which you can find on their website easily

    geniusglutenfree.com/gluten...

    It comes in a box of 8x400g loaves. It is impossible to buy less than this, they do not sell indiviual loaves on prescription. So, for £10 you get 8 loaves, whereas in the shop it would cost you about £24. And this is just the saving for bread. If you want you can also order biscuits/flour/pasta etc under this £10 fee, saving you even more money, until you have used up all your prescription units

  • Genius bread is the only GF bread that doesn't taste completely foul. I keep mine in the freezer and take out slices as I need them. They defrost in less than 5 minutes flat or I stick them in the toaster. That way they are totally fresh, and the loaf lasts as long as I need to it to. I don't waste a single slice - at £2.90 per loaf, I'm not going to! If you were buying a pack of 8 loaves, you would definitely need a freezer.

  • You can hassle Buyers of supermarkets direct by finding names on Linkedin - link up and then send them the email asking them the reasons why. I attended a free from seminar in September where there were representatives for many of the supermarkets present, and many were stating they were going to increase their range but like you I find they are reducing them - I have real problems finding the DS gF garlic bread and flat bread pizza!! They were always running out of the stock so I am unsure they can say it did not sell!! if you email me I can send you details for the event next year as I believe it will be an annual event.

  • Hi, like you I have an intolerant child to feed, and the list you have compiled is so familiar. I have been battling with the system for 3 years now, and am always outstanded at the conflicting information that professionals have given me. I was always under the impression that only diagnosed people with Coeliac disease are entitled to prescription food (my daughter is suspected to have it but, as i hear is the norm, there are complications standing between us and a definitive diagnosis...and so the tests go on). However, we have recently been told by yet another dietician that my child has allergies (also confirmed by biopsy), and therefore she is entitled to treatment on the NHS...as her treatment is the food she eats, she gets gluten free food on prescription. Great news for us, but i guess this is either an example of postcode lottery, or that the right hand doesnt know what the left hand is doing.

  • I noticed you don't have gf flours on you're list. this is my main gf product i use and make pizza base made of just the doves farm self raising flour,(some times veg oil) and water,oil a tray and flour it and flatten and form the dough on the tray.I also some time make then cheese free which can taste just as nice,they don't have to have dairy on or in them.

    I also make batters which i have used not dairy milks before to make as well.

    I made a ginger cake last month from a recipe i found on line which didn't involve any expensive gums either,some of these recipes need tweeking to to you're own prefence there will always be trail and error but it's worth a go with the flour even if just biscuits are what made.

    talking of tesco I complained to them a few weeks back when I walked down the free from aisle to find they had put their cheap normal flour next to the free from products ,I thinkk they must of thought that if they put them next to the boxed items it would be ok ,which all had flour on them.

    these chains have no idea about the illness caused by gluten which i explained to the person i was complaining to.

    this is why the products become less in some shops because they go on the money each product brings in an not on just providing what ppl need.

    they don't take in to account some people do what you do and buy things for a fortnight or more they just think of single weeks.

  • Thanks for all the tips everyone. We saw a specialist at GOSH this week and he suspects Zac has wheat allergy, but has agreed to test him for everything. So at least progress is being made there. Not sure we will get any help paying for the foods. We even had to pay for the hospital appointment as NHS has failed us so badly. Anyway, I will continue my home baking, and experimenting and keep hoping that one day things will be better and cheaper for anyone with these kinds of problems.

  • Hi, I am in a similar situation with my daughter who is coeliac& dairy intolerant. I do get Warburton's brown bread on prescription though. The highly processed gf supermarket foods are full of sugar so I limit them. I find baking muffins with Doves Farm flour is a great alternative.For breakfast we often blend some nuts with Soya milk, a banana& raisins then pour over plain gf cornflakes. It's nutritious and cheaper than some of the sugary gf cereals.

    Stoned dates are also good as snacks. Hope this helps

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