A whole aisle of free-from foods … aren’t we lucky? – by Jenny Foster


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Those of you who read my first blog last week will know that I have an 8 -year old son Ewan, who was diagnosed with Type 1 diabetes in July last year and with coeliac disease in October. The coeliac diagnosis has hit us hard but we are adamant that this added difficulty is not going to deter our positive attitude!

Immediately after diagnosis Ewan’s taste buds went into melt-down and in the first few weeks we only found a handful of gluten-free foods he liked and he became super-sensitive to any foods which contained even the tiniest amount of gluten, but we made sure we were extremely careful and his coeliac symptoms thankfully all but disappeared very quickly.

Ewan’s twice daily insulin regime means the carbohydrate content in his food has a huge impact on his blood glucose levels and so my food shopping lists have become unrecognisable in a bid to try and find (take a deep breath!) tasty, appealing-to-an-eight-year-old, gluten-free, carbohydrate-filled, low in sugar (phew!) foods and snacks, and it is proving really difficult! Most of the off-the-shelf gluten-free products we have found are laden with sugar to compensate for their lack of taste! So if I’m honest, our spirits are starting to waver.

Our lack of positivity wasn’t helped in the early days by people enthusiastically commenting that “Ooh isn’t it great you can get all his foods free on prescription”, and pointing out to me that “there’s a whole aisle in Sainsbury’s with free-from products on it” – it took all my patience not to reply with “Wow yes aren’t we lucky, he has a whole aisle to shop from and you only have the whole store!”

But knowing this kind of attitude isn’t helping Ewan and understanding that people are only trying to help and be positive for us, we are slowly finding foods that Ewan is growing to like and he regularly comments that he knows he is just going to have to get used to it. His bravery and resilience never cease to amaze me.

It is worrying however that during this testing time, we’ve discovered a definite lack of understanding (from both the general public and strangely our Healthcare Team) of the coeliac condition and its effect on a diabetes regime. Just like diabetes, if coeliac is not effectively controlled then the long-term effects can be devastating.

Each one is a life-altering condition but both together they are completely life changing and I’m not sure that this is widely understood or appreciated.

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9 Comments

  1. Nicola Withers says

    I myself am a Type 1 diabetic and was recently diagnosed with Coeliac Disease! As someone who has eaten pretty much what I wanted for 26 years im finding it so hard to find foods that are tasty and low in sugar so goodness knows how an 8 year old copes! And I don’t think there’s enough support or people who can fully understand what its like! Shopping has become almost impossible and extremely frustrating! I hope all goes well for you both.

  2. LISA COOK says

    My sister was diagnosed as Coeliac when she was a young child, she is 42 in april. The gluten free food, such as it was, was disgusting ! ! ! Bread came in tins, pasta looked like see through tubes and flour just wouldn’t mix properly. There were several types of flour and they were £8 + a box. I think there were biscuits but . . . yuk ! ! ! ! I’m so pleased that things have changed for the better in the selection of products available for people today.

  3. anthony smorthit says

    helen
    the same thing happened with our daughter ,she was diagnosed aged twelve with type 1 and then about a year later with coeliac, l think the coeliac diagnoses hit us much harder than the diabetes as we had just got used to the diabetic diet. l think it took us another year to get used to the gluton free diet which was much more difficult. the best tip l can give you regarding the gluten free is to buy youself a good breadmaker and use the gluten free mixes, thay do a very good range.
    the other hardest thing is of coarse eating out, fast food is mostly out of the question but when eating in resturants try and get hold of a menu online for them to look at and pick and if in doubt ring the resturant and ask if the dish has gluten in ,most resturants , if they are any good will always be helpful.
    it’s tuff at first but it does get easier.
    all the best tony

  4. Diabetes UK says

    Have any of you checked out Coeliac UK for help and advice? Might be worth having a look at their site for help with foods.

    We also have some gluten free recipes on our site that are quite tasty – just tick the “gluten free” box and hit search.

    Diabetes UK.

  5. Emma Ryalls says

    Hi Helen,
    My daughter Sophie was diagnosed with Type 1 Diabetes at the end of last November and her blood test came back positive for coeliac aswell but although they have referred her to have an endoscopy, the appointment hasn’t come through yet. So, we still have to give her her gluten in her diet at the moment until it is confirmed. I am doing some research into the gluten free foods but I don’t think it will hit us completely until we actually have to switch over. We as a family have found the last 3 months very difficult coming to terms with all the changes and all the emotions that you go through when you know Diabetes is here to stay. It is such a massive responsibility and I am a naturally disorganised person, so I have really had to pull my socks up! Luckily, my daughter is very brave, independent and strong and she is coping very well although it breaks my heart when she says things like, ” Mummy, I can’t believe I have got this forever” and there isn’t anything I can do or say. You feel very helpless as a parent. I also have 3 other younger children, so when Sophie is diagnosed with coeliac , I imagine the whole family will be on pretty much a gluten free diet. My mum said she is going to buy me the panasonic breadmaker for my birthday so i can at least try and make Sophie tasty bread every day!

  6. Jenny Foster says

    Hi Emma,
    So sorry to hear of Sophies diagnosis, we are only a couple of months ahead of you in terms of time since diagnosis and we are still feeling the same as we were back then, I think it takes some time to fully appreciate and understand everything. Sophie sounds like a trouper thought just like Ewan! I think Ewan is just now strating to show a few signs of resentment but hopefully they will pass as soon quickly as they came!

    I was wondering if Sophie is showing any Coeliac symptoms? If she is positively diagnosed after her endoscopy it is much easier to explain the change of diet if they can relate it to feeling better! If shes not showing sympotoms or feeling any pain it will be difficult for her to understand why such a big change is necessary.

    It also sounds like you have a supportive family – I have to say for me that has been the most important factor, when you have friends and family who are considerate of her needs at all times, it will really help.

    Good Luck!

    Jenny

  7. Jacqui Ellis says

    Hi – my daughter was diagnosed 2.5 years ago (age 10) on the same day with both type 1 and coeliac so understand very well the challenges you are facing – a year ago I was also diagnosed coeliac and my son is now awaiting a biopsy result from his coeliac scope which looks like it will be positive. The gluten free diet was so hard at the start to get used to and spent a life time shopping with tears rolling down my face at all the things we couldn’t have but to be honest now eating at home is fine and we have some great meals it is only when we go out we have trouble. My daughter is also now on an insulin pump and this has given her so much more freedom to eat whenever she wants – as long as it is gluten free! Good luck with your gluten free journey – you are not alone – Jacqui x

  8. Jenny Foster says

    Hi Jaqui,

    Thanks for sharing your story, lush to know we are not alone! I am planning a future blog on good and bad places to eat out so we are currently having some fun doing the research!!! Best place we have found so far is TGI Fridays! They have a designated menu for special dietary requirements and literally bent over backwards to make sure Ewan could have want he wanted off their menu, couldn’t recommend them enough if you have one close by, give it a go!!

    Good luck with it all.

    X

  9. will ryalls says

    my sister has diebetes

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