So it’s been just under four years since Betsy got diagnosed with coeliac disease.
It feels a life time ago already and so much has changed for Betsy since then.
As soon as we left hospital with her diagnosis we all began reading up on what this would mean for Betsy and for all of us as a family. It wasn’t just a change in diet, it was a change in lifestyle and behaviour.
Betsy went through what I can only describe as a detox for a round 6-12 months to get her body well again. This wasn’t easy and her behaviour wasn’t great either – let’s just say it was extremely erratic! There was lots of tears and a great deal of ‘that’s not fair’ and ‘why can’t I have that’ plus constant tantrums. All of which you would expect of a four year old just starting school but a great deal more.
Navigating food at home, school, parties and with friends has been an ‘ordeal’ and something that we still all struggle with and feel quite anxious about but manage some how. Let’s just say meal times, parties, play dates and going out anywhere to eat can be quite stressful.
However, the first thing we wanted to do once we knew Betsy had coeliac disease was to make Betsy feel as normal as possible and try not use it as a label – we didn’t want it to stop her from doing anything and it hasn’t plus why should it!
Before her diagnosis Betsy wasn’t really doing anything for herself and in particular her wellbeing. She couldn’t focus on anything and was just so lethargic. We wanted to give her an outlet, a focus and something to help forget the constant tummy aches! And this was the beginning of her gymnastics journey.
It’s fair to say that Betsy looks like a gymnast – small and compact. One of Betsy’s lovely school teachers used to call her ‘Persil’ – small but mighty, a nickname that has stuck! We never thought this was the beginning of a growing passion which she now can’t get enough of!
Betsy, 4 years on is now a more focused, confident girl who won’t let her coeliac disease hold her back and a huge part of that progress has come from her gymnastics club – Stella Gymnastics Club, Farnham which we are incredibly grateful for. You see, she forgets about being coeliac and it can’t and wont be used as an excuse. Food rarely comes into focus at gymnastics, so she just forgets about it!
Don’t get me wrong her coeliac means we have to think about her diet with gymnastics – like everyone does if they find a sport that they love and are good at. Coeliac disease can cause muscle pain and tiredness too due to inflammation and nutrient deficiencies, so we also have to remind her that she needs her sleep to refuel. But these are just hurdles and not blockages to stop her from doing what she wants.
Her #gymtastics outlet has definitely helped her cope with living gluten free! It also helps with her mood swings and for us it it’s great to hear about something positive from Betsy.
One pet hate that we’ve noticed since Betsy’s diagnosis is that she always sees the glass half empty. There’s a connection between coeliac disease and depression – the inability to absorb nutrients from food can influence brain functions. Betsy can struggle to look at the positives and is always feeling hard done by. I’m hoping over time, we can help her to work on this. This side of her hasn’t been helped by saying ‘no’ to lots of things i.e. food from an early age. When you think about it and especially as a child you’re always thinking about food – snacks in particular. So constantly she’s thinking ‘no I can’t have that’ or ‘can I have that?’ and then being disappointed. I get it and I do try to get her to look at the positives by asking her what was good about things, what was the best bit of school today (never lunch!) but it’s hard work at times.
I think one of her biggest struggles is not having any buddies going through the same thing to talk to about it. There’s lots of support groups out there for adults but finding young coeliacs going through the same frustrations is hard to find. That’s something we need to change and to create awareness about plus give her another network of support.
Something else we’ve also become aware of is that Betsy can quite easily pick up an infection, cold etc as coeliac disease affects the immune system. It is an autoimmune condition where the body’s immune system mistakenly attacks its own tissues in response to gluten, leading to damage in the gut and impaired nutrient absorption. So far, we’re managing to keep Betsy nice and healthy by making sure she takes regular vitamins and eats well. We’re so lucky that Betsy love her greens and gets quite excited by a salad being served at meal times!
We are also always trying to boost her iron levels as one of the nutrients often inadequately absorbed as a coeliac is iron, which can cause iron deficiency -anemia. Betsy always has really cold hands which is a common sign that she is lacking that iron. Thankfully though, she loves mummy’s spag bol and a roast dinner!
As mentioned, navigating food everyday can be stressful but four years on, we’ve got a routine and everyone who needs to know about Betsy’s coeliac has been helpful, supportive and inclusive. Family, friends, school and Cubs are always thinking of her at snack and meal times and however scary it can be for them, they go above and beyond to make us all feel at ease.
The food available is also getting better and more and more restaurants/supermarkets are stocking gluten free options – including Aldi which now has a section with a selection of gluten free products. Leon has also been a saviour – a much needed fast food treat!
We are always learning and finding out new things about coeliac disease but we’re winning! Betsy is coping, never going without and tackling the disease head on. We know there will be more bumps along the way but like everything we will do this together – #ThisGirlCan!
Find out more about coeliac disease and why it’s more than just being gluten free by reading my blog posts here: Betsy becomes a coeliac and More than just #GlutenFree. 📣
This is it – time to #RunForBoo
Last year I ran 70 miles in July, 80 miles in August, 90 miles in September and 100 miles in October – finishing off by running the Great South Run virtually around Farnham due to it being cancelled because of bad weather. I ran 340 miles in total!
I rolled my entree over to this year – so, on Sunday 19 October, I will be running my favourite run, around my favourite place ‘Pompey’ at the #GreatSouthRun2025.
As well as running, I’m giving up the alcohol this October to continue raising awareness of Coeliac UK and how it’s not just about being gluten free!!
I haven’t been boring you with daily updates as this year training has been hard! Life has been busy but on top of this the perimenopause has kicked in and my muscles and bones have just found running even harder! But I’m A very determined girl and as I like to say – #ThisGirlCan!
Feel free to follow me on Strava and give me some Kudos plus if you would like to sponsor me again this year and support Coeliac UK you can do so here: AJBell Great South Run Fundraising page: Claris Lamport. Thank you!! 💙💙💙😘
#KeepOnRunning #MummyClaris #BetsyBoo #CoeliacUK
#MyWorld 