Vegetarian coeliac teenager – the pain and the glory

Sharing the joy of catering for a vegetarian coeliac teenager

vegetarian coeliac teenager
Sadly, it’s not this simple

This blog has had a few incarnations over the years, since 40 first hove onto the horizon and scared the bejesus out of me. I think I’ve found its real purpose at last, as I suddenly find myself concerned mum to a vegetarian coeliac teenager. I’ll call her Tamsin, but it’s not her real name. I have lots to say, more to ask, and I’ve always believed in sharing information for everyone’s benefit.

I worked out today that it took two months to the day from initial visit to the GP to confirmation of the diagnosis. As usual the NHS gives excellent clinical care but the admin leaves something to be desired. Clearly that two month wait was the easy bit; having seen the dietitian today I realise that all my food and cooking knowledge is only so much help (god only knows how people cope who have no knowledge of or interest in cooking, especially if they’re on a small budget) and that I’m going to have to be super vigilant all the time.

On this blog I’d like to share our experiences, starting from the first moment I realised we needed to see the doctor. A great deal has happened since then and I can see issues piling up for the future. Fortunately (so far) my daughter’s co-operation isn’t one of them, but her engagement with it is also pretty low. I’m going to write blog posts to cover each stage of the process to diagnosis, and everything we have to wrangle with afterwards. I’m no expert but I’m always happy to help where I can, so please feel free to leave comments. I’m on Twitter and Instagram as @mamafication, and if you’re a knitter find me at www.theordinaryknitter.net.

 

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Coeliac Christmas

A very merry coeliac Christmas

coeliac Christmas
Tamsin’s gf Yorkshires

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.

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Food management

Food management and the butterfly coeliac teenager

food management
One of the happy recipients of Tamsin’s leftovers

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.

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Gluten free baking

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.

gluten free baking
A pale imitation of gingerbread

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

gluten free baking
A bit untidy, but that’s part of its charm

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.

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Prescription changes

Prescription changes can be a pain, but it does get better. I’ve catalogued our prescription woes in great and largely negative detail on this blog, but at last I’m feeling better about it all and getting a good feel for Tamsin’s new food intake.

Setting up alerts

I’ve set myself up a four-weekly alert for Tamsin’s prescription changes – prescriptions of gluten free food come every four weeks rather than strictly once a month, so you have to pay attention to your dates if you want to make any changes. It’s great to get 13 deliveries of food a year instead of 12, but it does make it a little more of an administrative headache.

prescription changes
Keeping track of Tamsin’s units

School lunches

Tamsin is still struggling to come to terms with GF bread, which tends to be dry and not terribly good for sandwiches, and has eschewed bread for school lunches in favour of a rice salad. As she’s reasonably grown up at rising 15 she can manage this, but I wouldn’t want to try it with a seven year old. This means I need to make prescription changes next month, as to date at least half her prescription has been bread and rolls, ordered deliberately with school lunches in mind. Mainly Tamsin has bread for toast and a few rolls which she puts under the grill for cheese on toast. We gambled on Glutafin‘s baguettes (224-0117) last time and she loved those. What I’ve never really noticed before is how Tamsin has a bit of this and a bit of that, and as she’s the only person eating her GF products, we need to keep an eye on things not going out of date. I now halve loaves before freezing them, freeze rolls individually if that makes more sense and have a tendency to bung anything bread-like in the freezer if I have any doubts that it will be finished before going off.

It’s difficult for Tamsin as she doesn’t necessarily want to eat a family-sized amount of something in three days, but then she finds that the thing she does want is in the freezer. I don’t know what the solution is, but I do know that if I left it to her to manage these things, our hens would be eating a hell of a lot of gluten free food.

prescription changes
Tamsin creates gorgeous pizzas

Going crackers for crackers

Crackers, crispbread and savoury biscuits have been a revelation. We ordered Glutafin GF crackers (009-3302), Juvela Crispbread (236-6136) and Juvela Savoury Biscuits (310-7893) and she loves those, so we’ll be ordering more of those. The Juvela White Mix (035-2161) has been very useful (for balance we have Fibre Mix too) so a couple of boxes of that a month will be a fixture, especially as we come into a more baking-y time of year. I think pizza bases are something to stockpile or order if we’re a unit or two under the limit. I do plan them for family meals once or twice a month and they’re something Tamsin will create for herself on a whim.

So my advice with prescriptions is to be prepared to make changes, identify the foods you’d rather not have to buy, the things you find yourself not wanting to run out of, and the foods that naturally suit your coeliac’s habits.

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Gluten free samples

Sending away for gluten free samples

Before Tamsin’s diagnosis I’d been chatting to a friend of mine who has an overactive thyroid. I’d thought that might have been Tamsin’s problem and I was keen to learn as much about it as I could (the general pattern here is that I think I know what’s what and then realise I’m actually at square one!). It turned out that her young daughter has an overactive thyroid as well, and coeliac disease on top of that, poor little thing. My friend was chatting about her daughter’s symptoms and suddenly I realised Tamsin was more likely to be coeliac – for once I actually was right and was prepared when the doctor told us this is what it was.

This friend of mine has been a fount of knowledge. Something she recommended was sending away to the main gluten-free food companies for gluten free samples. She said that the boxes were very generous and well worth obtaining. About 10 days ago the boxes started arriving and we were blown away! I was a little na├»ve at first and didn’t realise that these companies supply the prescription foods so of course they have a vested interested in coeliacs testing their foods and deciding they want them on precription but even so, the sample sizes were huge and have made a real difference to Tamsin over the last couple of weeks. Big boxes full of goodies arriving was just what she needed in the aftermath of her diagnosis.

There was so much food that I had to clear out and rearrange the pantry so make space for it, but I needed to do it anyway so it just spurred me on. Both boxes contained information on how many units each food represents, which is vital to know, plus prescription order forms and recipe books. As gluten free baking is so different from what I’m used to, I find the recipe books very handy. Who doesn’t love a recipe book?

Glutafin

gluten free samples
Stacking it up in the pantry

The first gluten free samples to arrive were from Glutafin. The box is very big and sturdy and contained masses of food. Pasta, pizza, bread, cereal, crackers, the list goes on. The pizza bases were especially welcome as we’d ordered just two at first. Tamsin’s happy to throw herself a pizza together so we’ll up her prescription of those – she doesn’t need to restrict herself to a night when we’re having pizza as a family meal.

The crackers were also a revelation. She loves them so we’re going to try to get those on prescription (wish me luck, the way that’s going). She liked the cereals but the cornflakes are a bit light nutritionally so we won’t bother with those on prescription, they’ll be a treat I’ll buy her from time to time. Overall the Glutafin box was a big success.

Juvela

Later the same day the Juvela box arrived. This wasn’t quite as bountiful but ever mindful of what really matters, Tamsin much preferred the colour scheme of the packaging. She really enjoyed the fibre flakes from that box so we’ll try to get those on prescription. It was helpful to have boxes of white mix and brown mix. They sound pretty unappetising but for general cooking they’ll be very helpful. Tamsin’s taking Food Tech GCSE, somewhat ironically, so they’ll come in handy there.

We received bread separately from Juvela. Although we’ve waited weeks for rolls, we’re up to our ears in bread. I’ve split some of the loaves in half and frozen them like that, so that we don’t risk a loaf going mouldy, as one did this week.

Schar

We received some bumf and couple of vouchersfrom Schar. I used one of the vouchers today to buy Tamsin some chocolate fingers so she has something treaty to eat when her friends are over tomorrow. I have a couple of smaller vouchers that I’ll use at some point.

With the help of these gluten free samples I’ve managed to avoid buying horrendously expensive foods for Tamsin, but I doubt that will last. Despite the clear marketing opportunity, it’s been great for Tamsin to try these foods. We knew the initial prescription was a bit of a guess and we’d have been unlikely to choose some of these foods if Tamsin hadn’t had them put under her nose. Wish us luck getting them prescribed!

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