Handing over responsibility

Handing over responsibility is what parents do. Sometimes it’s really tough, but sometimes it’s a blessed relief. I’m handing over responsibility to Tamsin for ordering her prescriptions, and there’s quite a lot to learn.

Setting up systems

Tamsin’s diagnosis is nearly a year old. We first went to the doctor last June and had formal diagnosis in early August after lots of chasing phone calls. It’s such a big diagnosis but the hospital showed no urgency in letting us know. Remember Tamsin had to keep eating gluten until the diagnosis was certain. Waiting longer than strictly necessary compounded the damage that had been going on inside her body for years.

Following diagnosis Tamsin was very happy to let me handle everything. She was 14, grown up in some ways but still young enough to feel daunted by this sort of thing. We had an appointment with the dietitian, changes to make at home and school lunches to think about. On top of that we had gluten free food prescriptions to organise.

Prescriptions come every four weeks, not the same date each month, so there’s plenty of scope to miss the deadline. I set up a reminder on my phone for ordering prescriptions, just to make sure I didn’t forget. Handing over responsibility just wasn’t an option at the beginning. Tamsin didn’t show much interest in helping to form her new diet, but old habits die hard. If she wouldn’t do it, I would have to, otherwise my daughter wouldn’t eat properly.

Units

Tamsin gets 18 units a month now. Units are the be all and end all for prescriptions. Patients get different numbers of units depending on their age. Understand how many units you’re entitled to. You then need to understand how many units each item ‘costs’.

Juvela and Glutafin send out handy sheets with unit info and PIP code on them. Keep them to hand as they really are invaluable. This is a specimin order for 18 units:

• 1 x Glutafin Pasta Penne               PIP: 211-5152 (2 units)
• 6 x Glutafin Mini Crackers           PIP: 353-5515 (6 units)
• 1 x Juvela Fusilli                           PIP: 280-7980  (2 units)
• 2 x Glutafin Pasta Spaghetti          PIP: 215160 (4 units)
• 1 x Juvela Tagliatelle                     PIP: 319-3497 (1 units)
• 1 x Juvela Lasagne Sheets             PIP: 280-7972 (1 unit)
• 1 x Juvela Macaroni                       PIP: 280-8004 (2 units)

Ordering systems

Our dispensary used email for repeat prescriptions until very recently. I’d send them an email much like the above and it all worked fine. There’s a new system now as part of our GP’s growing online services, but it doesn’t work well for us.

The page lists each repeat item available, but there’s no option to order multiples. Tamsin’s very partial to crackers (see above) so we usually order several packs. Sometimes we stock up on bread or white mix or pasta. It’s different every month. The surgery suggests we use the comment box on the order page to tell them how many of each thing we want. I thought this was great til I realised the prescription items shown also include the quantity last ordered. That means that Tamsin’s ticking the box ‘Glutafin Mini Crackers 6 x 175g’ but only wanting two boxes, or four. She has to add a comment for each item, which seems very clunky.

I understand why the surgery wants to move to the automated system and usually I’m in favour of these systems. This time though the system makes things more prone to error and confusion, not less. We’ve agreed to see how it goes this month, and revert to email ordering if need be. My next challenge then will be getting Tamsin to use her email more. If only the surgery could come up with a prescription ordering app Tamsin would really engage with it. If she could add flower headbands and bunny ears they’d really be on to a winner.

It’s Easter Sunday tomorrow which means celebration cakes of one sort or another. My last post was at Christmas, which reflects how I think things are going. Day-to-day we manage well, with room for improvement and a lot of me biting my tongue about teenagers’ eating habits, but when it comes to a special occasion things are a lot more like hard work.

Choosing celebration cakes

Typical Easter foods include simnel cake and hot cross buns, neither of which I’ve found in the Free From aisle in the supermarket. I’ve had very mixed experiences with gluten free baking but over the last few months I’ve got better with it and developed a bit of judgment, so I decided to try a gluten free simnel cake. Things snowballed from there as I had already agreed to make gluten free ginger cake for a knitting group I belong to, and when I spotted the hot cross buns that my husband had bought I couldn’t bear to think that Tamsin would be left out so found a GF hot cross bun recipe. The upshot of all this is that we now have a ton of food hanging around that Tamsin won’t make much of a dent in. I really need to get better at managing the flow of GF foods.

Recipes

• Gluten free simnel cake
• Gluten free ginger cake
• Gluten free hot cross buns

I used a regular simnel cake recipe, just subbing GF flour for regular. We’ve amassed a ton of white mix on prescription and it’s ideal for celebration cakes, breads, cupcakes and the mug cakes Tamsin’s quite partial to. It comes in 500g boxes which is perfect for many cake and bread recipes. Using what we had to hand it has a kind of eccentric mix of fruit in it and because I was low on marzipan and wanted to use up what I had (and because I’m terrible at decorating cakes) I put a modest disc of marzipan on the top and replaced marzipan balls with mini eggs on a blob of buttercream, also left over from recent baking. It doesn’t feature here but Tamsin made a fantastic sandwich cake recently, and had buttercream icing to spare. By the truckload. The simnel cake is lovely and is lasting well, always a bonus with GF baking.

The ginger cake is a Glutafin recipe, an old friend. If you try it don’t panic about how runny the batter is: you think the recipe can’t possibly work but it does, though it’s really really sticky on top so try to avoid turning the cake upside down (so don’t do what I did and use silicone bakeware that makes it really hard to remove small and sticky yet crumbly cakes). I made double quantities but we’re now up to our knees in ginger cake, so one will have to be frozen, probably in chunks.

The hot cross buns were an afterthought, literally, so by the time they were ready it was getting late and I didn’t finish them with the melted jam. For now they’ve gone in the freezer and will be brought out a couple at a time to be warmed through then have melted marmalade put on them. I don’t have apricot jam but neither did I have mixed peel, so subbing marmalade for jam should solve both issues at one stroke. I’m a big believer in using what you have rather than slavish adherence to recipes.

A very merry coeliac Christmas

This has been our first coeliac Christmas. Much of it didn’t vary from usual – vegetables, Quorn roast (beef for the carnivores), cranberry sauce etc, and Tamsin’s never liked bread sauce. Her dad made his famous sage & onion stuffing with gluten free bread that was slowly turning to dust in the fridge (see last post) and gf mince pies and Christmas cake was easily available in Aldi. Incidentally, Aldi is a great resource for everyday gf staples, including flour and pasta. Tamsin made her own gluten free Yorkshire Puddings which looked fantastic and from what she said tasted lovely too.

Problem areas

As mentioned in the previous post, Tamsin’s food management isn’t good and that caused ructions with her dad over Christmas pudding. To cut a long story short he made arrangements with her over a gluten free Christmas pudding, of which she then had about one mouthful and ignored the rest for a week, by which time it was inedible. This is standard stuff for Tamsin and can infuriate others who’ve made special arrangements about food to accommodate her. I know it’s wrong, but Christmas is a pressurised time for the host and catering for coeliac Christmas foods is just another layer of work. When it’s barely touched it’s hard not to mind a bit.

The problem we have atm is accommodating Tamsin while making an appropriate amount of something for her. Her appetite is much smaller than it was, so we now divide and freeze foods. Tamsin made herself a gf Christmas cake, ignored it for weeks, and then at my insistence cut it into quarters and has put it in the freezer. I expect this time next year it will come out and be fed to the birds.

Maintaining good hygiene at home…

The other issue with a coeliac Christmas is preventing contamination of gf foods with guests and lots of catering and hosting. Day-to-day we have this under control, but I watched like a hawk as people dipped into cranberry sauce, sliced roast, cheese etc, ensuring no-one used a utensil that had been used for anything else.

…and away

Tamsin saw friends several times over the Christmas holiday and her preparation was of course non-existent. It was up to me to ensure that she went with something she could eat – crisps or something else suitable for a party or sleepover. Today she was behind herself getting ready to go to a friend’s house and I had to insist she either eat before she went or took something with her; left to her own devices she would have waltzed out of the house having eaten nothing and with no rations.

Although she’s growing up and needs to take responsibility for herself and her condition, I just couldn’t in good conscience let her go out like that, especially as she was going to be in someone else’s house and I didn’t want to land them with needing to feed her. I really look forward to the day that she ensures she’s got what she needs and thinks ahead to how she’ll feel if she hasn’t.

Food management and the butterfly coeliac teenager

Over the last four months since diagnosis, food management has become our biggest issue. Tamsin is a standard teenager – getting up late, doing everything by the seat of her pants, following her whims and never planning more than a few hours ahead. Eating follows this pattern, which means we end up with half-eaten foods sitting around going mouldy and soft, which it seems to us happens faster with gluten free foods – we definitely find they don’t last as long as equivalent foods with gluten.

I’m far too embarrassed to list everything we’ve had to divert to our hens recently but suffice to say that they and local garden bird population ate well over Christmas. Once or twice this led to something only just short of a lecture but although Tamsin says all the right things and means well, at the moment she couldn’t plan her way out of a paper bag, much less apply effective food management to her vast stash of food.

Prescription foods

Tamsin’s next lot of prescription food comes round startlingly fast and is building up in our pantry. We now put bread in the freezer, and in future I’ll be splitting loaves and packs of rolls before freezing, as I’ve had to throw away more mouldy bread and rolls than I can remember. The issue is that Tamsin doesn’t eat to a routine of any sort, particularly in the school holidays, so she’ll start a loaf for breakfast, have toast for two days, then eat granola for the next week. In the meantimer it doesn’t cross her mind that there’s a loaf in the cupboard that will be inedible within a few days. I’ve taken to keeping open loaves in the fridge. They dry out a bit even well-wrapped but Tamsin finds gf bread so dry anyway that it doesn’t make much difference, epecially toasted.

Small appetite

I’ve come to the conclusion that Tamsin doesn’t eat a great volume of food. She definitely ate more pre-diagnosis, but counter-intuitively she’s putting on weight, which is long-overdue. Although she’s eating less she’s getting the benefit of it now, or more of the benefit of it, which wasn’t happening before. She’s noticed that gf foods can be more filling but this doesn’t yet inform her portion sizes, so she’ll cook or toast or take a large helping of something then leave 1/3 of it on the plate, completely stuffed. As a parent this is maddening, but I would never insist a child eat once they’re full so depending on what it is it either goes to the hens or is put away for later. It concerns me that Tamsin’s appetite is affected by her new diet but there’s little I can do about it.

Eating what’s easy

One element of Tamsin’s non-existent approach to food management is that she will often eat whatever’s to hand. She has a very generous and well-meaning relative who often rolls up with gf cakes and biscuits and of course Tamsin falls on them, initially at least. I’ll find the packet days later, under a sofa or in her bed, soft and horrible. She’s forgotten about them, there was far too much in the first place and after the initial thrill her appetite has fallen off. I’ve always hated the children eating too much sugar but there’s a path to tread between healthy eating and ingratitude to well-meaning people.

I’m hoping that once the children go back to school Tamsin will fall back into a routine with food and wastage will drop off to negligable.

Gluten free baking is more different from ordinary baking than I could ever have imagined. I understand the chemistry involved but hadn’t realised just how much of a difference gluten made to the finished product, both to the rise and more surprisingly to the moisture content. I’ve fallen flat on my face with both of these.

Early efforts at gluten free baking

Shortly after Tamsin’s diagnosis we went away for a few days. I wouldn’t have chosen that timing but we had a long-standing commitment. It was before we saw the dietitian though and I know now that I made loads of mistakes with the best of intentions, mainly through contamination. I wanted to take a ginger cake to one of our hosts but didn’t want to exclude Tamsin, as my ginger cake is one of her favourite things. It’s also a real volcano of a riser and a bit of a crowd pleaser. It’s probably a good thing I didn’t know how badly the GF version was going to turn out when I started.

Being a complete beginner with gluten free baking I took no chances and looked up a gluten free gingerbread recipe on the Doves Farm site. For all that I love the range of GF flours that Doves Farm makes, I really don’t recommend this recipe. Annoyingly I can’t find the image of the finished gingerbread but it was a disaster. The picture here shows it before coming out of the pan but it doesn’t look much better. It was barely an inch high. Having said that it tasted nice straight out of the oven, and if I’d been going to serve it straight away I would probably have got away with it, but this needed to be stored for 48 hours then presented to my hostess – I didn’t think it was going to cut the mustard, somehow.

Instead I decided to cut it into squares and take it away with us as a snack, perhaps for a picnic with a flask of tea. I produced the gingerbread at an appropriate moment, we all took a bite in happy anticipation of the sort of delicious slightly sticky gingerbread we were used to, and we all more or less spat it out. It wasn’t the taste but the texture that was so unnerving. It was dry but not crumbly, rather rubbery and just impossible to force down. Ever since we came home it’s been sitting in the freezer waiting for a suitable occasion to be heated up and drowned in custard.

Gluten free apple cake

This weekend sees an annual family tradition that always includes apple cake and, worryingly, ginger cake.

I felt the apple cake stood a chance as it’s a melted recipe that’s more like a cobbler than a sponge cake. I have a tried and tested recipe that I used, simply subbing ordinary self-raising flour for Doves Farm gluten free ST flour. So far, it looks like it’s worked out just as I hoped. I tried the bits that thoughtfully fell off as I transferred the cake from tin to rack and other than being a bit dry, which I now take for granted with GF baking, it tastes pretty good and isn’t too far removed from what we’re used to.

My biggest concern with the ginger cake is that it will turn to rubber overnight, so I’m going to make it in the morning and hope it cools in time. I’m following the Sticky Ginger Squares recipe that came with the Glutafin freebies, but without the rhubarb topping. I’ll report back. If I can find a good gingerbread recipe then Tamsin will be happy. The next step after that will be gluten free Christmas cake, which must be the ultimate GF recipe to get right.