Tuesday 25th September 2018. A year since Peggys diagnosis of Coeliac Disease. I’ve been thinking about a lot of things recently (mainly cake thanks to GBBO) but also reflecting upon how much the food landscape has changed in the past 12 months since diagnosis. The free-from aisles seem longer, restaurant menus have gluten-free options (and sometimes more than one!), gluten-free recipes pop up in my social media feed and it feels like everyone knows someone who is gluten-free. The words ‘gluten-free’ and dietary requirement appear on TV and in the conversations of those around me. If Peggy was diagnosed in September 2018, would it have been a different (maybe easier) experience? Or is my view skewed because of our situation? Is it just because I now have a coeliac child and husband with crohns disease that I’m in tune with the free-from world and in fact the journey would have been the same regardless of whether it had been a diagnosis in 2017 or 2018 because it was a new experience to us?
I cast my mind back to those very first recipes I tried for chocolate cake and my reaction to the word ‘Xantham Gum’ (WTF) and now, a year on, a tub of xantham gum is in my cupboard…I can actually pronounce it properly AND bake with it! Check me out! But as I become more knowledgeable about the food we can and can’t eat and more confident to try new recipes and products, have I lost touch with how it is for those families who receive a Coeliac diagnosis TODAY? Those individuals (and the parents of kids) with Coeliac Disease who are in the raw, angry, emotional early moments of diagnosis and bloody hate xantham gum like I used to? Have I turned into a xantham gum using instagramer that those people with a recent diagnosis scroll past in their social media feeds whilst whispering ‘twat’ under their breath?! I need to re-adjust my thinking. Reflect on the old me and how it was and look at the free-from world with fresh eyes.
There was only one thing for it – in the name of research I was going gluten-free for a week! But, due to us living with a coeliac super-hero for a year, the findings from this research would only be partly reflective of a diagnosis for an individual who had no experience whatsoever of the free-from world.
Crazy thought number 2; Could I convince 20 friends and family to go GF for a week with me? Did I have 20 friends and family?! I turned to my old faithful companion – no, not Sauvignon Blanc – social media. As I tentatively hit the ‘post’ button on a selfie of me hugging some crunchy nut
cornflakes I was fully prepared for ‘egg on my face’ and for no one to like or respond (apart from my number one fan/social media troll, my Mum).
I needn’t have worried as the reaction has been quite overwhelming! 31 people requested the info packs to go GF for a week with a feedback return rate of 60%. I am eternally grateful to each and every one of them. Some were like us and had people in their lives with Coeliac Disease already and therefore had some understanding and knowledge to draw upon. For others it was a totally new experience and a topic of which they had little prior knowledge of. They closed their eyes, pinched their noses and dive bombed straight into the gluten-free life with enthusiasm and optimism which left me quite astounded!
There was a window of 3 weeks in which the participants could select 7 consecutive days to be gluten-free. I asked them to sign a disclaimer (promising not to sue me should they reach their demise following the consumption of a loaf of gluten-free bread), complete a 7 day food diary (obv’s we all left out the number of glasses/bottles of wine consumed on a Saturday night and just wrote ‘wine’ on the food diary) and to feedback on their experiences by completing a questionnaire – the responses of which brought a tear to my eye in some cases.
When analysing the data to spot repeating trends or habits (this is apparently the academic term for looking at others food diaries to see if anyone in the research could match my own weekly chocolate consumption) a few key pieces of information struck me;
1; Participants stayed loyal to their ‘usual’ supermarkets (other than Aldi shoppers who reported that the free-from offering wasn’t great and went elsewhere for GF food cupboard staples). So super-markets take note – once you’ve hooked us in, we stay! The front runners being Asda and Sainsburys, closely followed by Tescos
2; Regardless of social trends suggesting fragmented eating times and the average bod eating out 1.5 times a week according to ‘Big Hospitality.com’ (https://www.bighospitality.co.uk), a majority of participants cooked from scratch and therefore managed to replicate their ‘normal’ meal time favourites by swapping a few staple ingredients with GF products. The meal that featured on 40% of food diaries being the good old Roast Dinner! Easily adaptable to become gluten-free by swapping gravy and Yorkshire puddings for GF ones– yummmmmmm!
3; Other than eating/removing every gluten filled treat from their kitchens the night before day 1, participants prepared for a week as a free-from’er by;
· Writing a meal plan
· Buying a few store cupboard essentials in addition to their usual food list (namely bread products, cereals/oats, beer, gravy/stock cubes, biscuits and crisps)
4; The only food bills that remained the same were those of the families already catering for an individual on a GF diet (16%). The remaining 84% reported an increase in their weekly food bill (up £30 a week in some cases!) The most noticeable price increase recognised in porridge oats and bread. Sadly, some individuals would like to become gluten-free on a permanent basis but price means this is not sustainable long term
5; Although 38% reported no change in their general health and well-being, the remaining participants reported improvements in their health, specifically;
· Improved bowl movements (22%)
· Less bloated/sluggish (28%)
· Loss of weight (12%)
Perhaps the most noticeable improvements in general health being from participants who have ‘life-long’ conditions and health concerns such as poly-autoimmune syndrome, endometriosis and post surgery issues following bowl cancer treatment/surgery
6; WE LOVE CAKE! Cake/tray bakes, chocolate and biscuits are our snack of choice! And the times we felt most excluded from social occasions? Those celebratory cake moments (in the office and at family celebrations) with 33% saying they had felt left out from proceedings when the cake was being dished out
7; We do eat out! But we give it some thought and research first. A few of us made a beeline for small, independent businesses who specialise in catering for those on a GF diet, and of the restaurant chains we tried Wagamamas and Pret-A-Manger were noted as being great places to grab a GF nibble
8; Unexpected change of plans throws us off. When a meeting runs over, a family day out lasts longer than expected, illness strikes or booze goggles are on (really hard to read that small print on packaging after a few shandys!) our best intentions fall by the wayside and we make mistakes. I fully recognise this one as on day 13 (I did 3 weeks in support of my fellow #glutenfreeforaweek pose!) Reg was admitted to hospital and my best intentions went pear shaped when the Costa Coffee in York Hospital only had 1 choice of GF sandwich ….the same sandwich I’d had the day before when in London. Tiredness got the better of me and I got my gluten fill with a chicken salad sandwich on ‘regular’ bread
General feedback at the end of the questionnaire reported that 100% of participants found being gluten free for a week a positive experience. Giving them insight into the lives of those people around them who live a ‘free-from gluten’ diet permanently. As one of the participants, Sophia Skipp from Feed Felix Fast, suggests; “It was good to experience that feeling of being cut off from what everyone else was eating”.
A majority reported the process of recording everything they ate on a food diary as being a great one to make them more mindful of their food choices and that the cost of free-from products was a surprise.
Making meals using gluten free stock, finding the ‘best tasting’ GF bread and discovering a cake which tastes like ‘the real thing’ means our little army of ‘gluten-free for a week’ soldiers will be the enablers. Enabling inclusivity, making sure that everyone has slice of cake in the office next week because they’ve experienced first hand how it feels to be left out. I work as a tutor in a local college and I’m so much more tuned in to the dietary requirements of the students in my classes now. I still bring sweets in at Christmas and chocolate eggs at Easter, but I always make sure they are free from any allergens so everyone can have one.
Personally I have found the experience both a positive and negative one in equal measures. Negatives being my frustrations at the lack of choice when eating out and labelling being tricky to decipher on some products. The inability to be spontaneous and ‘go with the flow’ for fear that there won’t be anywhere that can cater for our dietary needs. Positives being my empathy and understanding of Peggys food world. We both ate gluten-free fish and chips following a weekend away camping and both ate gluten-free pizza when friends came for dinner on Saturday and I think she enjoyed sharing the experience with me (as I did with her). I now understand her lack of enthusiasm for gluten-free bread and cereals. I get why its important to her to sit in the canteen with her friends at school to eat a hot meal which looks like theirs (because it doesn’t feel nice when everyone around you is sharing a positive experience like a yummy slice of cake that you can’t have). Jo, from ‘My Mini Coeliac’ writes;
“The whole experience made me feel quite sad for my daughter, thinking about what she will deal with as she gets older. But on the other hand, she has never known any different and there are still A LOT of choices out there.”
So as I draw this blog post to a close I salute you. The free-from super-heroes like Peggy who have no choice. That when gluten is accidently consumed it results in pain, discomfort, illness or long term health issues (not just a guilty conscience like me). I will continue to fight for a more inclusive foody future which is equal to those of us who happily consume what ever we like. I hope that you can order from menus with more than one choice (and have something other than a chocolate brownie for pudding). I hope that this experience will help me to relate to my followers and readers. I know now that I need to work on the perfect Yorkshire pudding recipe because the frozen ones aren’t quite the same! It makes me grateful for being blessed with good health and choice, and for now, I choose to remain gluten-free.