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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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 naïve 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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Teenage coeliac diet

Trying to control the teenage coelic diet

When we first discovered that Tamsin was coeliac, I was more concerned about her being vegetarian than anything else – as I say, when we *first* discovered. Since then all sorts of things have taken over as my main concern, in fact they’ve been competing for top place. Any teenager can be hard to feed healthily, but the teenage coeliac diet is another order of magnitude of tricky.

Being vigilant

I went in to the dietitian feeling quite smug that I was a decent cook with a good understanding of nutrition. I feed my family varied meals with vegetables and mixed protein sources. Well that’s all well and good, but a coeliac has ground to make up after anything from a few years to a lifetime of nutrient malabsorption, so we came away from the hospital with a list of ‘musts’ as well as a loo roll length list of don’ts. I realised that I was going to have to be quite vigilant to make sure that Tamsin was getting everything she needed. I’m just so relieved that Tamsin and I pull together quite well on these things; trying to do all this with a teenager you find yourself at loggerheads with would be hell.

Vitamin C and dairy

One of the main points I’ve kept front and centre (horrible phrase but accurate) is ensuring Tamsin has enough vitamin C, and keeping up her calcium levels. Tamsin herself has come up with the answer to one of these. She likes PLJ, the pure lemon juice drink, and Morrisons thoughtfully has it on special offer just now so I’ve stocked up. Tamsin has it with fizzy water and gets a good vitamin C hit that way.

Bumping up her calcium isn’t proving too tricky either. Tamsin likes dairy and her breakfast usually includes either natural yoghurt or milk, and our meals often include cheese sauce or cheese as an element, eg cheese soufflé, baked potato with cheese & beans. I’m also making more of an effort than usual to include leafy green vegetables in our meals (rainbow chard, kale and cavolo nero are all hits). In the evening I go over with Tamsin how much dairy she’s had during the day and if it’s been a bit light I make her a hot chocolate. We get full fat milk from the milkman but I keep a couple of pints of UHT to hand too so that we’re never too low that Tamsin can’t get as much as she needs. In these respects the teenage coeliac diet has been pretty easy, but they’re only a small element of what she eats.

School lunches

Until this September, Tamsin was the only one having a packed lunch and she was pretty easygoing, so I could use up all sorts of odds and ends (nice things, I don’t mean scraps!) in her lunch. Now of course I can’t do that and her brother takes packed lunches too, so I’ve had to be much more organised.

Our first hurdle has been rolls. We’re still waiting for the roll element of Tamsin’s prescription. She received two packs of rolls in her coeliac samples, but one is part bake and the other is very heavy to eat. She’s taken sandwiches instead which has been fine. She has salad in her roll and takes a piece of fruit, sometimes raisins as well, and now and then a few Aldi chilli rice crackers as a treat. I discovered in the freezer some gluten free madeleines we bought on holiday, so she can have those as a treat too. She has crackers and crispbread from her sample boxes but they’re trickier to prepare in advance as they go soggy with spread. We’re still working on lunches. I’ve suggested Tamsin makes a low-sugar banana loaf but so far she hasn’t got round to it.

Eating at home

teenage coeliac diet
Whole Earth peanut butter with sunflower, pumpkin and flax seeds

At home Tamsin eats well. Like all teenagers she’d cheerfully live on pizza and chocolate fingers but I have to say that the pizzas she creates are works of art. She likes to slice a whole mozzarella onto a pizza so that really helps with her dairy intake. She’s always liked peanut butter, especially with banana, and has taken a shine to Whole Earth peanut butter with sunflower, pumpkin and flax seeds. This morning she made herself gluten free pancakes (sadly she put syrup on them but you can’t have everything).

I’ve realised that convenience is a big thing for Tamsin. All teenagers like easy quick food they can disappear up the stairs with and though the teenage coeliac diet requires a little more planning, she can still do this. Most teenagers dislike feeling different from their friends so I do everything I can to give Tamsin a normal experience, especially when she’s with friends. With that in mind I’m going to see if we can get crackers and crispbreads on prescription, as she’s loved being able to eat those just with butter or peanut butter.

Together Tamsin and I have made up a jar of stuff she can sprinkle on her cereal. At the moment it contains dessicated coconut, sesame seeds, linseeds, flaked almonds and pecans. Tamsin loves nuts and I’m delighted to supply her with them. I’ve always tried to make sure the food we eat packs as much of a nutritional punch as possible, and now that feels more important than ever – I can’t miss a trick.

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Prescription teething troubles

Prescription teething troubles have come to dominate my life. I posted a couple of weeks ago about the confusion with prescription foods – how to change your prescription, what your surgery will or won’t, or might not, prescribe, whether you’d know, how long it takes to come in etc etc.

Roll on rolls

At the time I posted we’d had problems with the initial prescription even reaching the dispensary, and I was hoping the foods would be in imminently. The next day *part* of the prescription was in. That was over a fortnight ago and we’re still waiting for the rolls. The pharmacist is chasing the companies that provide the food (it’s either Warburtons or Juvela – I can’t remember after all this time!) but so far nothing.

To add to the drawn out prescription teething troubles, the breads are delivered only on a Wednesday or a Friday. Then there’s the oats: gluten-free oats are available on prescription, but our surgery won’t prescribe them. Not only that, they don’t tell you they don’t prescribe them, so you just miss out. No-one rings or emails to ask if you’d like to change it for something else, your child just misses out on one of their units that month. Actually it’s not a month, it’s every four weeks; this is great as it means Tamsin gets 13 lots a year instead of 12, but it also means the date jumps about every month so I have to keep close track of what’s when. I’ve set a reminder on my phone in time to make any changes.

Working with the dispensary

prescription teething troubles
Xantham gum – an occasional purchase

Next month, or should I say in just over a week as that’s when we’ll need to make changes in time for the four-weekly prescription submission, I’m going to ring the surgery about the changes and get them to tell me there and then whether foods are prescribed. I accept that oats aren’t prescribed, but it’s irksome as gluten-free oats are so expensive in the shops and Tamsin loves them for breakfast with yoghurt and fruit. I swither between feeling grateful that Tamsin gets anything on prescription, irritation with the surgery over their lack of communication and annoyance with the bread company that it’s all taking so long. I keep telling myself it’s just prescription teething troubles and we’ll be fine when it’s all settled down.

The changes we’re likely to make are reining back the pasta – Tamsin’s eaten far less than we expected and far less than she did wheat pasta – and increasing the cereals and crackers, crispbreads and white mix/flour. These last two have proved very useful for general cooking. Things like xantham gum I’ve just bought as although they’re expensive they’ll be a rare purchase so not worth the palaver of a prescription change. There’s more on prescriptions foods in the gluten free samples post.

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Prescription food

Prescription food palaver

Tamsin and I saw the dietitian recently. The realisation of how little I really knew about preparing gluten-free food shocked me into starting this blog. It’s so easy to believe you know what’s involved, when in reality it can be very confusing. It hasn’t helped that we’ve now waited a week for our first delivery of prescription food.

The dietitian went through the prescription food options with us. There’s an extensive list of different types of bread products (white, brown, rolls, loaves, baguettes, pizza bases etc), cereals, pasta, flours and sundries such as xanthan gum. At this early stage we had to take a punt on how much of anything Tamsin is likely to eat, so we came up with a sample list.

The dietitian told us not to take any kind of guilt trip from the pharmacy. Apparently some places have been known to be rather superior about prescribing foods now that there’s such a wide range available and some health authorities won’t prescribe foods at all, and are now suffering the consequences with ill coeliacs who’ve made mistakes or been unable to afford the special diet.

Substitutions

The other point made was that the pharmacy might be decidedly grumpy about any changes to the prescription. It’s inevitable that we’ll want to make changes – I’ll be astounded if we’ve got Tamsin’s requirements right first time – so I dropped into the pharmacy earlier in the week. I knew Tamsin’s prescription wouldn’t have arrived by then, but I wanted to know how the system worked. I had the fierce pharmacist unfortunately but she was surprisingly nice about it and said that as long as they had any changes notified a few days before the prescription would normally go through then it was fine. We’d been told that the doctor might not prescribe oats as they’re available in the shops, so I asked if we would be notified and asked to make a substitution but it seems not – we’ll just be short. I get the impression it’s a like it or lump it situation.

I went back to the pharmacy yesterday in the expectation that Tamsin’s food would have arrived, but the pharmacy denied all knowledge of the prescription, tediously. I rang the dietitian again and they’ve faxed (!) the prescription through again and had acknowledgement of receipt from the pharmacy. It should be available tomorrow, but then as it feels none of this has gone smoothly, who knows?

prescription food
Tamsin’s gluten-free shelf

Tamsin’s shelf

In the meantime I’ve made sure Tamsin has gluten free foods available without going mad. I’ve now cleared a shelf that contains ‘her’ foods – so far rice noodles, polenta, cornmeal, gf pasta, separate butter and peanut butter, gf oats and flour, and gf cornflakes.

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Separate foods

Separate foods vs good hygiene

I’m seeing contamination everywhere now. It’s my biggest headache at this early stage of getting the hang of what’s involved in looking after a coeliac, and I’ve realised that with a capable but not always switched on 7 year old in the house I can’t rely on people observing good anti-contamination hygiene. Separate foods is the only answer.

Just now my 7yr old put peanut butter on his (gluten containing) toast. Just too late I saw him wipe the excess PB onto the side of the tub, in an instant rendering that tub useless for Tamsin. It wasn’t his fault, he didn’t know, and I can’t expect him to exercise the level of vigilance and awareness that the adults will have to. In fairness, as that tub was 75% used already, it would have been untrustworthy. The only solution is to buy fresh tomorrow and put some in separate jars for Tamsin.

Marking the separate foods

separate foods
If it has an elastic band round it, mockers off – it’s one of Tamsin’s separate foods

I’ve invented the effective but ugly system of putting rubber bands round Tamsin’s foods. Depending on whether it keeps the lid on or goes round a jar, it can prevent someone casually using it because they can’t get the lid off without removing the band, or it acts as a visual or tactile reminder. My 7yr old will be fine with that and will proudly announce to everyone that if it has a rubber band on it, it’s one of Tamsin’s separate foods!

This does make me realise though that many of the pots I have open will be unsuitable for Tamsin. Squeezy bottles of eg ketchup (some are coeliac safe, some aren’t – that’s a label-reading job) or salad cream are fine, but anything you delve into with a spoon is no good for her if it’s already open.

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