Our story so far..
It all started when our daughter was 18 months old. Before that she had been a healthy, happy baby with no notable illnesses....
For a while she had patches of sore skin on her face which no combination of creams ever seemed to totally clear up but nothing much else. But come 18 months old, she started to be sick. She would be absolutely fine, running around, playing like any other toddler, then she would go quiet, be sick but then carry on playing again. Naturally, after the first few times (which at first were happening fairly infrequently) of her being unwell, we took her to the Doctor who suggested she was growing, her tummy was getting used to different foods, she was fine etc etc. This carried on for some time and by her second birthday, she was being sick much more frequently. She had started to look poorly and wasn’t the little girl we knew she usually was. Obviously she was starting to feel drained and it was clear something wasn’t right. I couldn’t tell you how many Doctors she had seen but believe me, it was a lot! I can still vividly remember that feeling in my tummy when I would ring home to check that everyone was OK – I would ring my husband on the way home from work “Hi, how is she? Has she been sick today?” to which I would hear a pause (during which he was obviously thinking do I upset her on her way home or tell her the truth) followed by “yes”. It’s just the most horrible thing having a poorly child and not knowing how you can fix it.
As anyone with a sick child (or indeed loved one of any age) will know, your mind begins to wonder and one evening I did the worst thing possible…. yes …. I googled “child being sick every day”. Well, you can imagine what I am faced with. Countless posts about brain tumors, debilitating diseases, cancer and obvious death. I realise as I write this that strangely enough, nothing about Coeliac disease ever came up… we will have to fix that!
Anyway, on her second birthday (great timing I know), when I am now 6 months pregnant with our second baby, we politely suggested to the GP that we were no longer willing to accept that she was “fine” and took her for emergency blood tests, we were also referred to a specialist. The first lot of blood tests didn’t show anything in particular. The specialist we saw was fantastic and indeed a lot of what he said was actually very true – our daughter seemed to fit his textbook model – however, by this stage she was (amongst an array of other things) small for her age and he suggested, that “as a precaution” we should run a Coeliac test just to check that she wasn’t a Coeliac.
I had no idea what a Coeliac was. He suggested that we cut out dairy, egg and soya and prescribed all sorts of different medicines. We did that and she did seem better; however, a couple of days later we got a call at about 8pm. We were sitting down to have dinner when the consultant called to say that the blood tests were back and her tTG level was 14 times the acceptable limit. He said the he would refer her to a Coeliac specialist and that she would need to have a gut biopsy. Remembering that at this stage I am heavily pregnant, I go into full melt down mode. Not only have I inflicted a disease upon my child (Coeliac disease is genetic), she is now going to have to have, in my head, "major surgery". In the cold light of day, I do of course appreciate that there are far worse operations that little children are going through every day but in my small world, at that moment in time, this was a horrific thing that was going to be happening to my precious little baby girl. Anyway, we went to see the next Consultant who was also wonderful and thankfully (you cannot imagine how thankfully) he explained that the guidelines had changed and that in young children, it was no longer standard practice to take a biopsy. In fact, he simply looked her up and down, asked a couple of questions and very swiftly concluded that she was a Coeliac.
Immediately various things became suddenly obvious; she wasn't growing; the same shoes had fitted her for a pretty long time; her big tummy wasn't "large, it was swollen from the effects of the Coeliac disease (I had never been able to understand why, a little girl who is given only home cooked food and very little in the way of unhealthy snacks could have such a "large" tummy) etc.
He explained that we must cut out gluten and that is where our learning journey began. But gosh, what a relief, we finally had an answer as to why she had been so poorly and why she had such bad skin (dermatitis herpetiformis is the skin manifestation of Coeliac disease) and the answer was so easy – cut out gluten from your diet. In comparison to the diet she been following (no eggs, dairy or soya) that was easy and in comparison to the things that were going through my head, this wasn’t far off the best news anyone could have given me!
She was tested for food group intolerances and all of the tests came back negative. She had stopped being sick altogether and seemed to be going back to her usual self - amazingly quickly in fact. We were told we could stop her medication and slowly reintroduce all of the other food groups and wow, she was absolutely fine!! It was unimaginable how cutting out just one thing from her diet could have such remarkable effects.
Gluten is now the only thing that she can’t eat and with the ever increasing array of options within the mainstream supermarkets (and Coeliac UK should get a mention here as they do tremendous work in raising the profile of Coeliac disease and getting supermarkets to commit to providing adequate gluten free options, particularly of the staples like bread, pasta, cereal, flour, rolls, crackers etc), that isn’t too difficult (although I do question whether the prices need to be as high as they are?!).
What is more difficult is when we go out. If I didn’t have a daughter with Coeliac disease I wouldn’t know nearly as much as I do about gluten, and where you tend to find it, but that’s the reason for this blog. With 1 in 100 people having Coeliac disease (so over 650,000 people in the UK alone - although statistics suggest that less than a quarter of these people have been diagnosed), this is something we need to get better at. It isn’t a “fad diet” or a “lifestyle choice” this is a disease and one which I can tell you from experience, makes you very poorly indeed.
So here I start on my mission to raise awareness of Coeliac disease! Let’s hope it works. I hate the thought of my daughter having to make a fuss on her first date (so when she’s about 30 then!!! :)) when the waiter brings her a Sunday Roast with extra stuffing and gravy…. hopefully by then it will be fine anyway as the stuffing will be made from gluten-free breadcrumbs and the gravy will have been thickened with cornflour. xx
