Help. My Child has Coeliac Disease.

We have been so lucky as parents so far. We have two beautiful, bright and healthy girls, who have had barely any interaction with health services. (That’s not entirely representative of Cora’s health but more on that in another post…) We have never had to dash off to A&E with injuries or illnesses but earlier this month we received the news that Bea has Coeliac disease and quite suddenly we have had to look at life from the perspective of a parent with a child with a chronic health condition.

The source of our first meltdown from Bea that she couldn’t eat something because it wasn’t GF.

That might sound a bit dramatic, but even as a doctor, I had forgotten much of what I learned at medical school to do with the longer term implications of the diagnosis. For those of you reading who don’t know, Coeliac disease is an intolerance to gluten, which beyond just causing symptoms like bloating, altered bowel habit and stomach aches, which people with a gluten intolerance who don’t have coeliac may experience, also affects the actual gut lining. The normal gut lining when looked at on a microscopic level has folds like ‘fingers’ all over it which increases the surface area over which you can absorb food. In coeliac disease the gut reacts to gluten and becomes completely smooth so food can’t be absorbed properly leading to vitamin deficiencies and malabsorption, which in children impacts on growth. There are also longer term effects, if untreated, like infertility, links to lymphoma and bowel cancers and other autoimmune conditions like diabetes.

So far so rubbish, but at least its easily sorted with a gluten free diet right? That is true but what I wasn’t prepared for was the level of exclusion of gluten that you have to go to. In the last week, the most common response to the news when we have shared it with friends has been, ‘at least you can get loads of Gluten free foods around here’. Where we live in Manchester is famous for being a Vegan and Vegetarian haven. We actually have a whole vegan supermarket, I believe the first in the country. So it’s long been popular with people who want to follow anything other than a ‘traditional’ diet whether for health reasons or faddy ones. And therein lies the problem, that a significant condition can be misinterpreted as a faddy perceived intolerance and not taken seriously.

In fact as we start to bring ourselves up to speed with what we need to do we have learned that keeping gluten free extends right down to having separate butter and toaster for Bea to prevent cross contamination of her gluten free food with regular bread or gluten containing products. Even simple things like making a quick sandwich for both the girls at home means two chopping board or prep areas, and concentrating on the knives and butter to make sure we don’t pick the wrong one up. We are getting to grips with it, but initially it felt completely overwhelming and stressful. I have a whole new sympathy for parents of kids with allergies, despite having been dealing with Cora being dairy free for the last 3 months, and egg free for almost 2 years, which although tough hasn’t had as serious consequences if a mistake is made. So yeah, one dairy free kid and now one gluten free kid is going to make food quite a minefield.

Couldn’t not snap Bea with this giant B outside Birba, Palm Springs.

Aside from the science and the stress, I’m broken hearted for her. Initially she has adjusted really well, as when we have been at home we have made sure she hasn’t missed out on anything by getting as much gluten free replacement foods as possible. Unfortunately for her the bulk of her favourite foods are wheat based – cereals, bread, pasta etc; We have had to switch to a packed lunch as school can’t provide completely gluten free coeliac friendly meals for her. We endured our first total meltdown on the last day of term before Easter (only a few days after her diagnosis was confirmed,) when the class had made rice crispy cakes which I couldn’t let her eat. ‘Rice?’ I hear you say… well as it happens, like many seemingly innocuous foods, Rice Crispies are made with malt syrup which comes from barley, which contains, you guessed it, gluten, so they were off the cards. And that’s before I even consider the type of chocolate etc. She broke her heart crying (and raging) that she couldn’t have it and I saw a long road ahead of us trying to educate her on why she needs to not eat these foods. Even now I worry how she will choose to manage it when she is an older more independent child or young adult.

One very happy young lady finding GF, Vegan pancakes at Palm Greens cafe in Palm Springs that the whole family could eat 🙂

Since her diagnosis we have also navigated the first kids party (fortunately at a local soft play which is used to dealing with dietary needs in their cafe,) and then shortly after we headed off to America on our recent trip to California. You would think they would be leagues ahead with dietary needs there but in fact it was more more difficult than it was here. Our first stumbling block was in the Pret at the airport (of the infamously slack allergy approach which lead to the death of a young girl who had a peanut allergy, which they are now I believe seeking to rectify,) where there wasn’t a single gluten free option for us to buy for her to eat. We have learned that preparation is key – not great for us as we often buy food on the go when we are out and I am not what you would describe as an organised mum, more of a seat-of-your-pants winging it type. Fortunately we had taken snacks but while we were away we made sandwiches nearly every day so we had options. We found American restaurants didn’t label their menus and when you ‘asked the server’ they weren’t clear on the requirements or provisions for the level of gluten free food we required. Being gluten free is huge over there and as a result there were options but many were very adult (Salads etc) which Bea just wouldn’t eat and I worried about her getting enough protein and carbs for proper nutrition. Lots of places had a GF option but when you asked if it was prepped separately to avoid cross contamination from gluten containing foods, they couldn’t or wouldn’t do that. It made eating out pretty stressful, both for us trying to choose the right thing, and for Bea who often didn’t want to eat what she ended up with, either because she didn’t like it, or because she just didn’t want GF pizza that night, which I totally understand. It must suck not getting to choose your food. Fortunately the supermarkets had lots of options but rather than being in a ‘free from’ section they were all intermingled so shopping wasn’t straight forward either.

The Baked Bear in Pacific Beach, San Diego had GF DF ice cream cookie sandwiches so both the girls were so excited to enjoy a treat!

Since her diagnosis, we are finding our way with options at home and out and about locally. I’m trying to focus on making sure the default quick option isn’t sweet as a lot of GF ‘snacks’ are sweet rather than savoury – its easy to find GF cake for example when you’re out but not GF bread sticks and hummus. I’m working on being more organised and meal planning (so not my forte,) and we are learning all the time. We also have a dieticians appointment in a couple of weeks which should help with some tips I hope. It’s also hard trying to make sure it doesn’t impact on Cora. In time she will also have to be tested as there is a cross over between some siblings, as will Pete and I, but theres also the headache of making sure she still gets gluten in her diet so as not to create an intolerance, when it’s easier to just make everything GF.

Thanks for listening readers. It’s easy to portray an ideal life through Instagram, but I wanted to share this, partly out of looking for help and ideas. I know there must be coeliacs out there amongst you or your families and friends and I would be super grateful for any tips, ideas or just general solidarity you’ve got to send my way. As always, the strength in blogs and social media is in the community, for which I’m always grateful.

Also, if parenting isn’t your thing (and you got this far!) I shared a shopping round up on Instagram Stories today which I saved to highlights, of some gorgeous summer pieces I want to buy! I’ll also put a post up on Insta to make it easier to comment on this post if you would rather comment there than here.

Happy weekend readers,

xo

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9 thoughts on “Help. My Child has Coeliac Disease.

  1. My cousin is coeliac – he didn’t find out until late childhood if I recall, so it’s good that you’ve caught it early I think. The adjustment is hard and needs thought – the need for separate kitchen equipment and preparation and cooking space as you say. I know he mostly takes his own food to social gatherings and looks after the prep himself, so unfortunately it does take away a bit from the ‘adhoc-ness’ of life which we often take for granted. The main change he had to make was that he grew up being a vegetarian, which he ended up having to give up because there just weren’t enough options for a healthy diet otherwise – I don’t know if that has changed in recent years. I’m afraid I don’t know about longer term health implications.

  2. I’m so sorry to hear this Rebecca. B couldn’t have 2 better people than you and Pete in her corner and that is most of the battle with these things. My nephew has severe allergies and my sister (his mother) is a pediatric dietitian. She’ll admit herself that it’s been such a struggle, particularly when he asked Santa to make him like other children. It was heartbreaking. That said they cope brilliantly and C is a happy healthy child. You will do the same I’m sure!!

    • It is heartbreaking. Every time She asks for something she can’t have, she will say, does it have gluten in it, and I say yes, then you can see the cogs turning in her head and she looks momentarily sad then will ask brightly, ‘Is there gluten free?’ filled with hope again and its so hard to crush that.

  3. I’m coeliac too, was diagnosed aged 8 months, 30 years ago. I’m a doctor too. I have to say, it is A LOT easier to be coeliac now than it was back then. There is a lot of awareness now, back in the day noone had even heard of gluten. Yes, you have to be careful that noone thinks you are just a faddy eater, but at least people know what you are talking about. Growing up I could never eat out and never eat at friends parties. As a child you do get used to it but yes it’s hard. What I found hardest was that my parents never even tried to cater for me – so on holiday we would go out to cafes, my whole family would eat a cake and they would never think to bring anything for me so I would have nothing. You sound like you’re already being a great mum about it!

  4. I feel your pain. My 3 year old daughter was diagnosed at 18 months after she stopped growing. It was completely unexpected as no one else in the family has it. A year and a half on we are used to having everything separate at home but eating out still requires lots of forward planning. The risk is always that places don’t understand the difference between an intolerance and the autoimmune condition that is coeliac disease and the tiny amount that can trigger a reaction. One example was a lovely restaurant that prepared gluten free battered fish from scratch but then later I overheard the chef saying she only had one fryer in the kitchen and therefore she cooked everything in it. I think there is more awareness but there is still a way to go. If you haven’t already I recommend joining Coeliac UK.

    • I agree. I’m having a lot of trust issues right now. Will places actually do what they say they are doing to prevent cross contamination when they are out of sight? Do they really understand the importance of what we need or dismiss it?
      Definitely joining Coeliac UK and we have the dietician next Friday so hoping we can get some more help there.

  5. Just followed this after seeing your IG story (it’s definately the weird algorithm).

    I must admit I had no idea Gluten Free needed to be so thorough in terms of cross contamination. It’s been eye opening. Sorry I couldn’t help but the above poster is right, Bea is lucky to have you fighting her corner and like everything parenting related, it’s all just a bit adjustment and soon prep will be second nature. You’ll find hacks – prepping lots in advance maybe you so have snacks on hand all the time – and then you can tell everyone about them.

    Love to Bea the poor thing.

  6. Hi Rebecca. Just wanted to say that Kat from Does my Bum Look 40 has a daughter who is coeliac so it might be worth messaging her to ask for advice. Hopefully she can help you.

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