Good days and bad days – life with an intolerant child 1

Zac is, understandably, a very fussy eater. He wasn’t always that way. When we were weaning him, he was a hungry, happy little boy who would eat anything. He had a lot of very dirty nappies but I just thought that was part of the transition! His sister had been similar, and both were thriving, so I didn’t think it meant anything.

After his swine flu, which he got for his first birthday, he finally got his appetite back – and he was ravenous. But everything seemed to make him sick. I was quick to spot that milk and milk containing foods were a problem and swiftly replaced those with an appropriate alternative, with dietitian advice. Next I spotted that wheat was an issue, so out went the shreddies for breakfast etc. Then I discovered that some non-wheat foods were aggravating him, so assumed it was the gluten. So that went out too. He was tested for Coeliac but that came back negative but we were advised to keep gluten free anyway.

Between the ages of one and two many foods were eliminated from his diet but he was still ‘not right’ and having far too many nappy explosions and was a very restless child. He would ‘yelp’ in his sleep and thrash about waking up several times every night. He always had a runny nose and had dry and itchy skin. We saw several GP’s, paediatricians and dietitians and ended up on a very strict dairy free, wheat free, gluten free diet.

We identified his triggers through keeping food diaries and elimination tests. You would think it would be easy enough to manage and for the most part it was. He was fine with the soya yoghurt, milk and gluten free pasta and bread. They were the first test and he was probably too young to remember anything else but he was very mistrusting of any new foods and he also rejected a lot of the foods he used to like.

He was two and a half by the time we had it all worked out and during his testing, we had put him on a low residue diet – eliminating fruits and vegetables with skins and seeds. So out went carrots, peas and sweetcorn – his favourite vegetables. And we had to put him down to half a banana a day and no more than a handful of grapes. These had been previously favourite breakfast foods and good snack options.

When we were given the all clear to reintroduce these vegetables, he flatly refused to touch them. I think he had just forgotten he liked them. Two months is a long time for a toddler. He said they gave him a tummy ache. For all I knew, that could be true or he could just be using the excuse I had given him. He used to have a lot of tantrums (understandably) when we were out and about he could no longer eat garlic bread or pasta in restaurants or have ice cream at parties. I used to explain to him that some foods gave him tummy ache and he had to have special foods. So I guess he realised this was his trump card to play whenever he didn’t fancy something.

Getting a toddler through the terrible twos is hard enough, when you put food intolerances on top of that and start chopping and changing their diet you are giving them even more to get cross about and it is heartbreaking. I got to the point where I used to turn down birthday party invitations because it was just too sad. At the start of the process he would get upset but as time went by he was just totally indifferent and happy to wander off while the other children ate. I used to take his special food, but I could tell he felt left out. So did I!

So by the age of three Zac totally understood he cannot eat anything without me giving the all clear first and he was absolutely fine with it. I told him he was special and had a special tummy that needed special food and that seemed to pacify him. But he was a crafty little thing and used his tummy as an excuse to be extremely fussy with food. The dietitian warned me that it was a natural self-preservation instinct and I could see what she meant – however, I was now left with my biggest challenge of all. How do I get the right foods in him and give him a balanced and varied diet?

He would only eat his special cereal and special milk for breakfast. Bananas and grapes were the only fruit he would touch. His favourite dinner was pasta but he became fussy about the sauce. He wouldn’t eat potatoes or rice anymore. He would eat sweetcorn but he wouldn’t touch any meat or fish. He did like toast with dairy free spread but was not crazy on sandwiches but eventually I managed to get him to eat marmite, but have since been told it is a ‘borderline’ food for Coeliacs.

A nightmare. It is a lonely life and anyone with a normal child has no idea how much of an obsession it becomes. Watching every bite that goes in your child’s mouth. Almost all mothers know the feeling of disappointment and anger when a child flatly refuses to eat the food you put in front of them. But that is nothing compared to how it feels when that food cost three times as much as normal food and you know that your child’s diet is so poor you are just desperate for them to get something ‘good’ inside them.

I have always been interested in food and nutrition and loved cooking, so it was not as much of a chore for me as you might think. I quite enjoyed experimenting with foods and trying to create new things to tempt him with, my blog is full of them. I ended up going back to the start and revisiting the weaning books. I did baby led weaning with Zac and there was a time when he would happily eat a carrot stick or courgette stick. But I knew that wasn’t going to happen again. I didn’t do the puree thing when he was a baby but I whizz up some of my pasta sauces to make them less chunky. So I decided that it might be worth giving that a try again. I know it seems like a big backward step but I decided that I had to try anything to start getting him to eat meat and vegetables again. It worked. If the sauces were not too lumpy he would eat them – even if they contained chicken or beef or tuna or a whole host of vegetables.

With that as my short term solution, I created a whole variety of sauces and served them with every pasta shape imaginable, just to make it look and feel like he was having a bit of variety in his diet. I remember reading in a book that kids go off foods if they are eating it too often and they forget they like stuff if they don’t get it enough, so it is a tricky balance. So I started writing weekly meal planners. Helped with budgeting too, so not a bad discipline.

Zac is now nearly four and really enjoys the social aspect of eating and is hungrier than ever, so I have been starting to feel that I need to really push him even harder to try more foods. I have never stopped trying really. I read somewhere once that you need to offer a child a food up to twenty times (or something) before they are likely to try it and decide they like it. So I have done that. I put peas and other vegetables on his plate almost every day but it just freaks him out some days and he yells and refuses to eat until I take them away, so I usually give in. I was also told by the dietitian not to make meal times a battle ground – so it is a very tough game to play!

We have some social eating occasions coming up, and I would just love it if I didn’t have to take a ‘packed lunch’ with us. Recently I bought him a big flask type thing, so we could take hot food out with us, but a lot of places are not welcoming to ‘self catering’ and you do feel a bit awkward.

Many foods are naturally gluten and dairy free, e.g. rice, potatoes, meat, vegetables – so long as they are not cooked in butter, dipped in breadcrumbs or smothered in cream or cheese. If Zac were less fussy and would just eat a piece of plain grilled chicken and a bit of rice, eating out would not be half so tricky.

So this week, I decided it was time to really try again. And yesterday we had a breakthrough. Just the night before I had been discussing it with Tom and voicing my concerns about the narrow diet. I told him I just wished I could find a way to improve it. I know it is sound, the dietitian said so, but it was not varied.

As if by magic the next morning Zac woke up and declared he didn’t want cereal for breakfast. He wanted fruit salad with yoghurt and toast – something he has had in the past but not wanted in a long time. I arranged it all on a plate to look as attractive as possible, and he dipped his grapes, strawberries, banana and toast into the yoghurt. He loved it. I was so happy. I hate breakfast cereals and have longed for him to eat something else.

The strawberries are a new re-addition to the diet. He liked them before the low residue diet, but as they have seeds they went out and he forgot he liked them – until recently. He went to the pre-school Summer Club for a few days at the start of the school holidays and they were served as a snack at break time. I guess it was the peer pressure, seeing all the big kids tucking in, or perhaps he was just starving and knew there was no alternative but he came home proudly telling me ‘I love strawberries now’. So needless to say, I have been offering them to him most days since. He has also started eating apples again for the same reason. Hurrah.

It was this new sense of adventure that made me wonder if it was worth trying a few more new foods. Yesterday, I took the children to the safari park and packed their picnics, with the usual. I took a nectarine for myself, and as I do with everything I eat (that is Zac friendly) I offered him some. I explained it was like a peach and an apple. He likes tinned peaches, so I thought he might try it. I took a bite and showed him the flesh. He licked it and told me it was yummy. He then took a bite. He loved it. I let him have it and couldn’t wait to get home and tell Tom! It is amazing how excited you can get over such a small thing.

It was a real boost as only the day before he had a very bad tummy ache and I got quite upset (but didn’t show it to Zac). It was the first in a very long time. In fact, it was the first time he has actually been able to explain to me what hurt and where. He had eaten too much cereal, toast and fruit that morning and had also had a packet of raisins and I guess it was all far too much fibre and he had cramps. He couldn’t eat his lunch and was bent double in pain. I was so worried and expected him to be really ill. But after a few trips to the toilet it passed and I could see the bloating had subsided. I felt so guilty because I knew I should have refused him the raisins but that is the problem with his intolerances, snacking is very difficult. It is not like he can have a bit of cheese and crackers! He gets bored of rice cakes and too many of those aggravate him too, so I guess some days he eats a bit too much fruit.

So for me that was a bad day and it was no wonder I was so happy the next day when he was not only well but interested to try a new food – even though it was just another fruit. But for me, it was a sign. A glimmer of hope. If I can start to persuade him to try some new fruits and broaden his diet, perhaps one day I could interest him in some other foods. I can accept having a child with intolerances, but I would feel I had failed if he and I used it as a life-long excuse for being a picky eater. I also want his diet to be nutritionally sound. It is my responsibility as his mother.

After the safari park, we went to the supermarket.  I had decided to have another go at feeding him the gluten free, dairy free fish fingers. Tom, Sophia and I love fish. I want him to love it too and if fish fingers are the entry point then that is fine by me. The ‘free from’ versions are very expensive, so I won’t be giving him them every night, but I was determined to try. I found them. The Asda we go to has a large variety of free from foods in the freezer section and alongside the special fish fingers, I also found some special chicken nuggets.

Again, I am not keen on my child eating this kind of food every night, but if I can just persuade him to take a nibble and look at the chicken inside, I might be a step closer to getting him to eat some proper chicken. My long term ambition is to get him to eat and love a roast dinner. The original dairy free, gluten free dinner.

Despite the fact that these chicken nuggets and fish fingers were hideously expensive, I bought them. I cooked them. I offered him one of each and to my amazement he ate them. I cut them into quarters, so he could see what was inside. I explained what it was. Sophia and I ate the same and that seemed to reassure him. He liked that they were crunchy but he also seemed to enjoy the bits of ‘naked’ fish that fell out.

I felt like celebrating. I took photos and emailed them to Tom. I told Zac I was so proud of him and he could have a special treat after dinner. He was so pleased with himself. I had said he could have a special ice cream in a special cone and he smiled. As soon as he finished, he said ‘Can I have my treat now please’ and I set off to get the ice cream, but when I returned I found him back at the table biting into another nectarine. I asked him if he wanted ice cream and he said ‘No, this is my new favourite’.

So there you go. To anyone else who is going through this, it is hard and you will have bad days, it will cost lots of money and you will waste hours and pounds cooking and throwing away food, but you have to keep going because eventually the hunger and interest will win over and they will start to be a bit more adventurous. Don’t give up.

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One comment

  1. Lovely to see you today! Thanks for this post – it’s so refreshing to know that other people out there are going through the same battles as we are, and I only hope that it becomes easier over time for us all. I love reading your blogs as it reminds me I’m not alone. Thanks Nic.

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