Sunday, 24 March 2013

Gluten-free cakes, bakes and mistakes!

When I was growing up one of the most memorable things about birthdays were the amazing cakes my mum used to make. We would spend ages deciding what kind of creation we wanted, looking through a fantastic cookery book that Mum had that had pictures of every type of cake that a child could imagine- castles, cars,  bunnies, .

Mum is a fantastic cook and passed on her love of baking. I really enjoy seeing butter, eggs and flour coming together into a tasty triumph (or on occasion a fantastic flop). That said, I'm not a creative baker. I need a recipe to follow and can make a small change or two with out too much risk (substitute orange essence for lemon!) but I am not good at guestimating quantities or making up recipes as I go along, so learning to bake with new ingredients was a challenge.

Learning from the experts:
Very early on, I went looking for a good gluten-free cook book.  There are plenty on the market and also lots of recipes available on line. I picked up Phil Vickery's 'Seriously Good! Gluten-Free Cooking'- which is a nice recipe book, but some of the meals are a bit too sophisticated for a toddler and wouldn't be the quick and easy type of food I would be preparing after a busy day at work. I didn't like the fact that you have to create your own flour mix using rice flour, corn meal and corn flour for most of the baking recipes. I've found that baked goods using this mix are a bit coarse in texture.  I also got 'The Gluten-free Cook Book for Kids' by Adriana Rabinovich. This is a nice book, with lots of tips for coping with a child on a gluten-free diet. She also has a website with recipes and tips: . The only downside of the cookbook is the lack of pictures- I quite like to see what I'm aiming for!
Additionally Coeliac UK and most companies who provide gluten-free products have recipes on their websites to help you make the most of their ingredients.

How to adapt:
I've found the best gluten-free baking  recipes are ones that don't deliberately set out to be gluten free, they just don't contain flour. However, most 'normal' recipes can be adapted fairly easily. Most of the big supermarkets sell gluten-free flour- often both plain and self-raising. Dr Oetker do a gluten-free baking powder which can be used of you only have plain GF flour and need self-raising. For some reason I find that GF flour and flour mixes are a little on the dry side, so I usually add a little bit more liquid to recipes where I've substituted GF flour for normal flour. I was introduced to the other saving grace of gluten free baking by a friend from work- xanthan gum- honestly, it's the future! Just half a teaspoon into any recipe stops it becoming crumbly and falling apart, as many recipes seem to do.  (Just don't spill it- it's a pain to clean up!)

Birthday bakes and mistakes:
For Alexandra's 2nd birthday, her first after being diagnosed, I decided to go easy and do GF cupcakes. Dove's Farm have a simple recipe here: . I was really proud of myself and was having fun doing different toppings and decorations  when I thought to have a look at the sprinkles and sugar strands I was liberally shaking all over my GF goodies. Yep- 'may contain wheat and gluten'. There were about 4 buns that I hadn't finished which could be rescued, but the rest were all off limits to the birthday girl!
I have since been very careful with sprinkles and cake toppings, and I have to say gluten-free ones aren't that easy to find. The nicest sprinkles I've had have come from the US via my Mum and sister.

Alex's 3rd birthday cake required a bit more experimentation. Remembering how much I loved choosing a cake and not wanting to deny Alex the opportunity I asked her what type of cake she would like. 'A pink princess castle' please was the response. The web provided lots of examples of castle cakes- most with ice-cream wafer cones for the turrets (not an option), shop- bought swiss-rolls (not an option), and sugar-paste (which I am rubbish at).
Eventually after a few disasters I managed to adapt a recipe for a swiss-roll and cobbled together a cake which ticked all the boxes.

Gluten -free Lemon Swiss-roll Recipe

4 large eggs
125g caster sugar plus a little extra for rolling
125g Gluten-free plain flour
1 teaspoon Xanthan gum
1 teaspoon gluten free baking powder
1 small lemon, zested and juiced
2 tablespoons of lemon curd- home made or shop bought willdo
Butter for greasing

·        Heat oven to 220 degrees C
·      Lightly grease swiss roll tin and line bottomwith baking parchment, lightly grease parchment
·      Put eggs in bowl with caster sugar and whiskwith electric mexer until pale yellow and thick enough to leave slight trailwith whisk
·     Seive flour, xantham gum and baking powder intomixture and fold in gently
·       Grate the zest of the lemon and add, along withjuice of lemon and fold through
·      Pour into tin and gently spread to ensuremixture reaches the edges
·     Put in preheated oven for 10 minutes, untilsponge is golden and starting to come away from edge of tin
·      Prepare large piece of baking parchment bysprinking with caster sugar
·      Turn warm sponge out onto parchment, removelining parchment and trim the edges off sponge
·   Score slightly about an inch from one short end,then roll up the sponge with the sugar covered baking parchment and leave tostand (seam side down) for about 3 minutes
·     Meanwhile, heat lemon curd for a few seconds inthe microwave
·     Unroll the sponge and spread with lemon curd
·      Roll up again and wrap tightly in bakingparchment and leave to cool

     You can use jam instead of lemon curd or make it chocolate by adding cocoa powder if preferred.

     Alexandra will be 4 soon and has requested a chocolate 'Hello Kitty' cake. It will also be the first party she has had that hasn't just been family and I intend to have a completely gluten-free event. Any ideas or suggestions welcome!


How do you know if she's had some gluten?

Sometimes people have not understood the implications of eating gluten for Alexandra. They think being gluten-free is a lifestyle choice, or that a little bit of gluten won't matter too much. We've had waiting staff in restaurants acting like we've asked the earth when we've questioned them about the ingredients and cooking methods used.
There is a simple reason as to why we are so 'fussy'.
When Alex consumes even a small amount of gluten she starts to vomit. She throws up until everything in her stomach has been ejected and then she continues to retch. She brings up bile. If she has a drink of water to clear the taste she throws this up. Alex's body doubles over and heaves with the convulsions that are gripping her stomach. It lasts for hours and she becomes exhausted, but whenever she starts to drift off to sleep another wave of spasms start and she wakes crying and gagging and spewing.
There is nothing at all that I can do except hold her and try to calm her down, curse whatever situation has caused the reaction and pray each time that she starts to snooze that this is the end of the episode. When she wakes after finally getting some rest she is right as rain again and all we have to do is wash the sick out of her hair and pile all of the towels and blankets we have used to try to protect the surroundings (her aim into a basin isn't the best!) into the washing machine.
I know it could be worse- it's not a potentially fatal reaction like a peanut allergy, but it does have long term implications. Coeliac disease is not an allergy, it's an auto-immune disease that affects the lining of the small intestine and prevents it from absorbing food. If a coeliac does not follow a gluten free diet, not only do they experience symptoms in the short term (diarrhoea and vomiting are common)  it can also lead to osteoporosis, anaemia, infertility and bowel cancer (
However it is because I can't bear to see Alex in such pain and because I hate feeling helpless that I continue to be so awkward in restaurants, at parties, when visiting.

Will she grow out of it?
We get asked this alot too. In fact, I don't know where she got the idea but Alex told her daddy recently 'I'll be able to eat it when I'm older' in relation to some cake that she wasn't allowed to have. She was quite distraught (for about 2 minutes!) when we told her that she would always have a special tummy and have to eat gluten-free food.
Her reaction should hopefully get less extreme as she gets older. Even in the few years since she was diagnosed the 'waiting time' between consuming gluten and getting sick has increased. (Although on the downside this can make it harder to work out where the gluten accident happened!) However, it isn't something she'll grow out of and Alex will always have to watch what she eats.

Has my Mummy said I can have it?
A friend pointed out recently that if people didn't know about Alexandra's condition they would think I was a very strict parent. This is because she asks about every morsel that passes her lips when we're out and has perfected a forlorn look when I tell her she can't have a cake or a biscuit. On the plus side it means that, although we will always be on the look out for gluten lurking on the buffet table, Alex is starting to learn how to manage her own condition now.
As soon as she started learning to talk we encouraged Alex to start asking 'has it got gluten in it' when ever we ate out. She had no concept of what gluten was, I'm not sure she understands what it is now, but it meant that she didn't just take whatever food she could see and raised some questions for those around her.
We are lucky that all of our friends and family are on board and are as vigilant as we are about what Alex eats, sometimes stopping her from having something that Alex knows she can have until they've checked with us first- always better to be safe than sorry.
Even with all this protection though, we sometimes have a wake up call. We had an incident a while back when we went to a friend's party. Our friends had catered specifically for Alexandra and we knew most people at the party, so were happy to let her wander- confident that we had taught her to ask before she ate anything. Half way through the event my friend came running towards me with a tearful Alex in one hand and a chocolate brownie in the other. He had seen her eating what he thought was an off limits snack and had swooped in to prevent her from eating more. Alex was very indignant and insistent that she was allowed to eat the cake as she had asked. As it turns out, she had asked an adult if it was ok for her to have the cake and that person had said of course she could (after all it was a party!), unfortunately, they weren't aware of her condition...... Yep, more cleaning up and a reflection on what we could have done differently. We can't watch Alex every minute of the day, and she needs a bit of independence when we're in a safe place, but we want to do every thing we can to protect her from a gluten reaction.  Luckily, Coeliac UK provided a solution. They do wrist bands for children which highlight the fact the they're coeliacs (find them here: ) . Now Alex wears her wrist band for every party or social occasion where there may be people who don't know her background, and, so far, we haven't had a repeat.

Sunday, 17 March 2013

A coeliac in childcare: she's been throwing her food on the ground!

When Alexandra was diagnosed with coeliac disease I was working four days a week and Alex was in a day nursery. She had three meals a day there, so they were going to have a huge role to play in maintaining her gluten free diet. The nursery had always been great for food- they had a dedicated cook and a very varied menu, prepared fresh every day.

Before Alexandra returned to nursery I sat down with her key worker and went through exactly what the dietician (the proper paediatric one, not the ditsy one) had told us. We had been given a list of what plants, grains and cereals have and haven't got gluten in them and nursery took a copy of this. We did have a shorter cheat sheet, but the more comprehensive guide can be found on the American Celiac Association website here :  (they spell 'coeliac' without the 'o' in the US!)

Initially, things were looking up and Alex was eating well, putting on weight and getting back to walking and playing with her little buddies. We did have the odd few 'blips' along the way though. I want to point out that our nursery was fantastic on the whole, and we were very happy with them. I am highlighting the mistakes that were made in the hope that others can pre-empt and avoid them completely.

Is it a fair substitution?
When the babies are young at this particular nursery, the parents always get a list of what the child has eaten that day. I don't know why I didn't ask, but for some reason I just assumed that Alex was eating pretty much the same as the other kids with one or two substitutions. It was only when I was told that she had thrown her pudding on the floor and it was not the first time that it had happened that I wondered. Very apologetic for her behaviour I asked what it was that she had thrown on the ground. 'Orange slices' I was told. Oh right- and what did the other children have for pudding I asked, my heart starting to sink. 'Chocolate chip cookies' I was told. Hmmm, that might be part of the cause of her 'irrational behaviour' I suggested, there's quite a difference between orange slices and chocolate chip cookies. I'm sure some saintly 2 year olds would choose the fruit, but not my sugar lover! 'Our cook bakes the puddings fresh and there isn't always an equivalent substitute' I was told. Well, I went to Asda and bought a box of mini gluten free muffins and a packet of gluten free biscuits and asked for them to be kept in the cupboard and given to Alexandra if the kids were having a sweet treat, and to be informed when they run out so I could replace them. I was never asked to bring in more food, and Alexandra was always given a similar meal/ pudding from then on. Sometimes the nursery bought treats in, but also their cook started baking batches of GF cakes and freezing them.

They were also really good in consulting with me regarding Alexandra's choice of cereal, and always had her favourite Doves Farm GF chocolate stars for breakfast.

Let's swap food:
There were more challenges when Alex was 2 ish and the kids started eating from each other's plates. After a few 'incidents', the nursery decided to assign a nursery worker to watch Alexandra at meal times to ensure there wasn't any 'swapping' going on. We then had some issues with staff/ supply workers who weren't familiar with Alex's situation giving her the wrong food, so the nursery implemented a system where 2 permanent members of staff had to check and sign each meal she was given to ensure it was ok for her. I know this probably sounds complicated, but it worked. As we became more confident with the GF diet, so did the nursery staff and the number of accidents reduced.

Inclusiveness is important:
The nursery also made other changes, such as making playdough out of gluten-free flour so it didn't matter if Alex put her hands in her mouth before washing them. (It doesn't matter if coeliacs handle gluten containing products, but young children have a habit of putting their hands in their mouths and commercial play dough contains gluten.) When I discovered that they were putting Alexandra in a group that was doing a different activity on 'baking days', I provided some easy GF recipes and the staff were happy to include her in the baking group.

Another area that could have been fraught with difficulty was other children's birthdays at nursery. Parents would often bring in cakes or sweets to celebrate their little one's big day. The nursery never gave these out during the day anyway, handing the treat to parents to dole out when they came to collect their child. As Alex got older and realised that other children were getting 'something nice' the nursery started giving me one of her 'special' treats, wrapped in tinfoil, the same as everyone else's, so she didn't feel excluded.

Communication is key:
When managing a child with coeliac disease in a nursery setting, I think the main thing is communication, discussing the fears, concerns or questions of all staff (not just managers and keyworkers) in an open way and setting out what your expectations and concerns as a parent are. I feel it's important not to jump to blame when an incident occurs, but to look at a solution. Myself and my husband have certainly made the odd mistake (pulling the wrong fish fingers from the freezer-oops!), and have had to find systems that work to protect Alexandra in the same way that the nursery did. I can't believe that any nursery worker or carer, having seen the effect that consuming gluten can have on a child, would not do everything in their power to prevent it happening again and would be open to any suggestions or ideas that a parent can offer.

Alexandra no longer attends day nursery, she has started at nursery school, which has been another eye opener, and has fantastic child minders who are fully comfortable and able to manage her condition.

Please feel free to share your experience of  how your nursery coped with a gluten-free kid or any tips on how to manage a gluten free diet in a childcare setting?


Wednesday, 13 March 2013

Starting out gluten-free- bread basics

I love bread. It's so easy for a quick lunch or tea with a toddler to make a sandwich, beans on toast, egg and soldiers, crumpets, pizza bread. It's also handy to grab a sandwich from a cafe if you're out and about and get caught short for a snack.
So sourcing gluten-free bread was the initial dilemma we had when Alex was diagnosed with coeliac disease. Do we make our own? Use a mix? Shop bought? Scrap the bread and look for an alternative?  Well, we've tried them all with varying degrees of success.  (By the way, I am not sponsored nor do I have any connection with any of the brands mentioned in this blog, these are just my personal experiences.)

DIY from scratch:
Initially I thought I would be a super-mum and make all of my own gluten-free bread from scratch- not a problem, anything for my little darling, and we could all have beautiful fresh home-made bread every day. HA HA!
Well for a start, I could not find a decent gluten-free bread recipe. Either I needed about 10 different flours (rice flour, corn flour, maize flour, chestnut flour-yes, apparently there is such a thing-chickpea flour etc etc), or if the recipe had ingredients I'd heard of and could get hold of, I just could not produce a decent loaf. They all came out either stodgy and brick like or crumbly and falling apart. I'm sure there are many parents with fantastic skills in this area, but I had to accept that I am not one of them!

DIY with a bit of help:
Next I tried the bread mixes. Glutafin does a gluten-free bread mix (available on prescription or in some supermarkets), as do Mrs Crimble and Organ (available in Tesco and some other supermarkets). Juvela does various flour mixes with recipes specifically for bread-makers. These were all slightly better than my from-scratch attempts in terms of taste and texture and the bread-maker that my parents gave us made it fairly straight forward to do- bung in all the ingredients, press the right buttons and wait. However, it wasn't the perfect solution to our bread troubles. First of all, while the taste was acceptable, Alexandra wasn't that keen. The texture was always a bit heavier than 'normal' bread and myself and the hubby decided that we would not be giving up our Hovis Best of Both to unite the family palate. There was also the issue of perish-ability. My fresh home-made(ish) bread did not stay fresh for long and I ended up throwing out vast majority of the loaves. If I tried to freeze the bread it ended up quite soggy when defrosted and was not pleasant. I have spoken to other parents who have had better success with the bread maker, and know of one Dad who had a great response when he rang Juvela's free helpline ( ) to discuss changes in quantity for his specific bread-maker. However for me, it was not worth the effort.
By the way, if you want to try any of the mixes, most of the companies that provide gluten-free food on prescription offer samples to people who are newly diagnosed with coeliac disease- ask your dietician for more info.

Vacuum packed supermarket bread:
Most of the larger supermarkets (certainly Sainsburys, Asda and Tesco) offer a range of gluten-free  bread products, including the type of sliced loaf that comes vacuum packed in 2 sections. This was a bit better. On the plus side, it doesn't taste too bad, it's not as soft as standard bread, but it's not quite cardboard either. It freezes ok, but actually, because it's packed in 2 sections, Alex usually gets through a section before it goes stale anyway. On the down side, for some reason the slices are quite small in size, and the bread can crumble easily. We tend to use this type of bread for toast, and occasionally sandwiches. Well, I say sandwiches, in fairness, it is often more of an elaborate form of packaging, in that Alex will just eat the filling and leave most of the bread behind, but she'll eat the odd slice!

Fresh sliced gluten-free bread:
The next option we looked at was the fresh sliced loaf. Genius and Warburtons appear to be the market leaders here, and to be honest, aren't too bad at all! If we are doing GF sandwiches for any non-coeliacs who are used to 'normal' bread, we tend to use this as it's closest to what we're used to. We did consider whether to use it as a family, but at £2.50-£3 a pop for a small loaf decided that it wasn't a viable option. You can get fresh bread on prescription, but it only comes in larger quantities, which would use up most of the prescription points for a child. However, over all, fresh sliced is not a bad option.

Which side is your bread buttered on?
We learned very quickly that you can't share butter with a coeliac child. When Alexandra was first diagnosed her stomach lining was damaged and extremely sensitive to any gluten. Even a crumb of bread would make her vomit for hours. We have a separate tub of butter, squeezable condiments (it's so easy to put a used knife back in the jar) or separate jars of jam etc for Alex. (Morrison's do mini jars like you get in B & B's, which are perfect for her). In our fridge, if it's got a sticker on it, it's safe for a coeliac. The other thing that's handy is toaster bags, so we can keep Alex's toast safe from cross-contamination.
This isn't always easy to explain to others when we go visiting. Very early on we went to a party where the mum had bought gluten free bread and had made sandwiches specially for Alex. I was thrilled that she's been so considerate and didn't even think to ask about what she had spread on the bread. Needless to say Alex puked herself to sleep and I spent the next day cleaning out the car seat (I'll tell you more about her reactions another time).
Now, I always take a spare sandwich to any party or social gathering- just in case!

Do you have any recommendations for gluten-free bread products or any bread recipes you can share? I'd love to hear your thoughts.


Sunday, 10 March 2013

Getting the Coeliac diagnosis: I'm in A & E, they need to admit her...

....Not what you want to hear first thing on a Monday morning when you're in a meeting a hundred miles from home!

Initial symptoms:
My 16 month old daughter Alexandra had been becoming increasingly unwell over the past months, we just didn't realise how unwell. She had been cranky, fussy with her food, more tired than usual, however, we had a litany of excuses. She was teething, we'd been on holiday and she was out of her routine, she'd changed rooms at nursery and was getting used to new people. When nursery told me she was staying away from other children and was fussy about contact with adults, I was secretly praying I wasn't going to have an awkward, socially inept child. When I spent a whole night walking the floors trying to comfort her I told myself I was going to have to get stricter with the controlled crying technique- I was obviously not doing a good enough job. It was only when one of our lovely nursery workers pointed out that she had in fact stopped mobilising (she had been cruising) that I realised there was something wrong.

Apparently other children with coeliac's might experience diarrhoea, constipation or vomiting along with weight loss. Indigestion and abdominal pain might also be present. Unfortunately Alex was too young to tell us what was wrong. A full description of symptoms can be found on the NHS website here:

At the doctor's:
I immediately booked a GP appointment only to be told (after a very cursory exam) that 'it's probably a virus'. ( I have since made a complaint about the trainee GP, who palpated my daughter's stomach while she was still in my arms rather than lying on a bed as she didn't want to disturb her, but that's another story).
I booked another GP appointment for a week following that as I wasn't happy with the response but in the mean time had to go to London for the weekend for a work function, leaving Alexandra in the very capable hands of my hubby. During the weekend I had a number of increasingly concerned calls telling me that Alex was very lethargic, had diarrhoea, wasn't drinking. I got my hubby to call NHS direct who said to bring Alex to her GP on Monday morning- important but not too urgent. The next call was on Monday morning from the QMC hospital in Nottingham- Alex was being admitted via A & E, they weren't sure what was wrong and needed to do tests.

A week in the hospital:
When I got to the hospital after the most horrendous train journey of my life I looked at Alexandra with fresh eyes. She was listless, gaunt, with hollowed eyes, had a massive bloated stomach and her ribs and shoulder blades were visible through her skin. She looked like one of the Ethiopian  babies I remembered in charity campaigns from my childhood. In effect, she was starving. Her stomach was no longer able to digest the food she was consuming and she was malnourished. How could we not have noticed that she was fading away?
From the beginning coeliac disease was the differential diagnosis of choice, however my mind was preparing for all of the worse alternatives (leukaemia or cancer being the one that my imagination was honing in on). With coeliac's, you need to remain on a diet that includes gluten in order for the tests to be accurate. The main test used for diagnosis is a simple blood test which checks for a certain type of antibody which is present in people with coeliac's when they have been ingesting gluten. However, we were told that the test can sometimes be negative, when the person does in fact have coeliac's, and additionally, it could be a few weeks until the results are returned, therefore the doctors wanted to perform a biopsy.  This is where a tissue sample is taken from the lining of  intestine to look for signs of the disease. For adults this is done by endoscopy under a local anaesthetic.  Because Alex was so little, they needed to give her a general anaesthetic. After a night of no food or drink (and therefore no sleep), we eventually brought her down to theatre. Although I knew it was a routine procedure, my heart was breaking seeing Alex's little body lying in my arms and feeling her go limp as the anaesthetic was administered. However, the results were back in about 24 hours, and ironically,the blood test results came back a day later, both were positive for coeliacs.

Well, relief was the main feeling (it could be so much worse, we can handle this), followed by, confusion (what the hell has got gluten in it and what hasn't?). A brief visit by a dietician at Alex's bedside didn't help much (there were no paediatric dieticians available, so this lady was sent as she had been diagnosed with the disease herself- she was nice but a bit ditsy and vague to say the least- our experience with dieticians since has been much more positive).  Finally, after a week in hospital, the end of the beginning was over and our journey of living with a gluten-free kid had begun.

Alexandra is now nearly 4. We've learnt, often through trial and error, how to manage her diagnosis in various situations. We're still learning, and still have 'gluten mistakes', but it is alot more manageable than I'd initially feared.

I know through  Coeliac UK ( that there are alot more parents out there who are being introduced to life with a gluten-free kid, so I thought I would start a blog to share some of the experiences, trials and tribulations that we have had.

I am an expert-by-experience rather than a medical expert, so please refer to other websites, or a health professional for any medical information. Please feel free to comment, ask questions or share your own experiences with me though.