Too bad that there's not more like Too Good!

We were recently saved from 'the worst day ever' by the lovely folk at 'Too Good to be Gluten Free'.

We had dear old friends staying for the weekend and despite them having been in Nottingham numerous times before, we had never made it to Nottingham Castle with them. We had decided that this was to be the time that we would go to see the historic monument, however, Nottingham City Council had given over the venue to a Great Food and Drink Festival for the weekend.

Undeterred, we were looking forward to having a stroll round the stalls before tackling the tourist trail. There were cooking demonstrations by the obligatory TV chefs, a nice kids play and crafts section, live music and numerous lovely artisan food and drinks stalls...... of which a grand total of 1 was dedicated to gluten-free food.

As we wandered around, our gluten free kid was getting more and more upset as there was nothing that she could try. (She could have had the amazing passion fruit vodka from I Heart Vodka had she been of drinking age, but she's not, so I had to have her sample. And a bottle- just to make sure it really was that good!). To add insult to injury Alex got a free balloon and within minutes it had burst. In her best drama queen style she threw her stick with the flaccid red latex hanging off the end to the ground and wailed at the top of her voice 'this really is the worst day ever!!'

Fast forward to a very forlorn walk towards the exit when we came across the No G camper van, gleaming in a ray of sunshine! Too Good to be Gluten Free offer pies, quiches and tarts that are genuinely good. The flakey, buttery pastry and rich tasty steak and ale filling was just what our hangry diva needed, and for us non-coeliacs, we couldn't tell that it was gluten-free. To brighten our day even more, the charming people from No G offered us some of their other flavours to take home and try. Chicken, bacon and leek, fish and potato and vegetable were all as good as each other, heating up well in the

oven. When we asked where No G pies are available, we were told Sainsbury's or Ocado. They had been available in Asda, but unfortunately, Asda had been pushing for too much of a reduction to make it viable for the company to continue to supply them. (SHAME on you gigantic supermarket chain- we want more options for good quality gluten free food, not less.)

In the end, it was a lovely day and we even got to meet Robin Hood! It would be so much lovelier though, if the food festival organisers could do something to encourage/ facilitate more stalls with options for people with dietary requirements. Unless I knew for definite that there would be stalls that Alex could enjoy, I won't be rushing back to another food fair with her in the foreseeable future.

Can she be gluten-free just like me?

'I wish my kid was sick', said no-one ever (unless they're very very sick themselves, but let's not go there). However, in the run up to our third daughter being born recently, Alexandra mentioned a few times that she hoped her new sister would be 'gluten-free'. Although I don't share her hopes for Zofia (mine are more along the lines of 'I hope she won't turn out to be a psychopath','I hope she'll make a better fist of using Twitter than I have', 'I hope she'll chose me a good nursing home in my dotage')  I can completely understand where she's coming from.

Alexandra is really good about her Coeliac disease. It's all she's really known and she is well aware of the outcome if she eats gluten. She usually just accepts that she can't have what other people have without complaint. However, recently she has been more aware of her difference and the fact that she can't just join in when people are eating.

In fairness, we, and those involved in Alex's life (including school) try to ensure that her food and treats are comparable to what her peers are having. I usually have some sweets or a muffin in my bag in case we are involved in a spontaneous treat or surprise which involved cakes or biscuits and we always bring a 'picnic' to parties and events. However, I still get caught off guard at times and have to promise Alex that I'll get her 'something nice' later, as she sits watching other children munch on biscuits or crisps. It's awful. She accepts it quietly with sagging shoulders and lowered head. Occasionally she gets upset- 'it's just not fair mummy' and I have to agree- it's not.

Sometimes it's the small things that cause tears- like Katya having a piece of my toast. I will make toast for Alex using her bread and butter, but that's not really what she wants. It's sharing some of mine, being part of things, joining in without standing out that she craves.

So, rather than genuinely hoping that Zofia has a serious auto-immune illness, I think Alex really just wants someone to share what she goes through.  As she gets older I think she will realise that she is not as alone as she thinks. There are a large number of people with undiagnosed Coeliac disease, and this week is Coeliac awareness week. The Coeliac society is encouraging people to become aware of the symptoms of the disease and to push for proper testing, as many people are misdiagnosed with other conditions such as IBS. Visit the website coeliac.org.uk for more info on symptoms and diagnosis.

By the way, although I don't long for Zofia to have Coeliacs, I know there's a good chance she will as it's genetic, and it won't be the end of the world if she does- at least she'll have her big sister for company!

Getting the Coeliac diagnosis: I'm in A & E, they need to admit her...

....Not what you want to hear first thing on a Monday morning when you're in a meeting a hundred miles from home!

Initial symptoms:
My 16 month old daughter Alexandra had been becoming increasingly unwell over the past months, we just didn't realise how unwell. She had been cranky, fussy with her food, more tired than usual, however, we had a litany of excuses. She was teething, we'd been on holiday and she was out of her routine, she'd changed rooms at nursery and was getting used to new people. When nursery told me she was staying away from other children and was fussy about contact with adults, I was secretly praying I wasn't going to have an awkward, socially inept child. When I spent a whole night walking the floors trying to comfort her I told myself I was going to have to get stricter with the controlled crying technique- I was obviously not doing a good enough job. It was only when one of our lovely nursery workers pointed out that she had in fact stopped mobilising (she had been cruising) that I realised there was something wrong.

Apparently other children with coeliac's might experience diarrhoea, constipation or vomiting along with weight loss. Indigestion and abdominal pain might also be present. Unfortunately Alex was too young to tell us what was wrong. A full description of symptoms can be found on the NHS website here: http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Symptoms.aspx

At the doctor's:
I immediately booked a GP appointment only to be told (after a very cursory exam) that 'it's probably a virus'. ( I have since made a complaint about the trainee GP, who palpated my daughter's stomach while she was still in my arms rather than lying on a bed as she didn't want to disturb her, but that's another story).
I booked another GP appointment for a week following that as I wasn't happy with the response but in the mean time had to go to London for the weekend for a work function, leaving Alexandra in the very capable hands of my hubby. During the weekend I had a number of increasingly concerned calls telling me that Alex was very lethargic, had diarrhoea, wasn't drinking. I got my hubby to call NHS direct who said to bring Alex to her GP on Monday morning- important but not too urgent. The next call was on Monday morning from the QMC hospital in Nottingham- Alex was being admitted via A & E, they weren't sure what was wrong and needed to do tests.

A week in the hospital:
When I got to the hospital after the most horrendous train journey of my life I looked at Alexandra with fresh eyes. She was listless, gaunt, with hollowed eyes, had a massive bloated stomach and her ribs and shoulder blades were visible through her skin. She looked like one of the Ethiopian  babies I remembered in charity campaigns from my childhood. In effect, she was starving. Her stomach was no longer able to digest the food she was consuming and she was malnourished. How could we not have noticed that she was fading away?
From the beginning coeliac disease was the differential diagnosis of choice, however my mind was preparing for all of the worse alternatives (leukaemia or cancer being the one that my imagination was honing in on). With coeliac's, you need to remain on a diet that includes gluten in order for the tests to be accurate. The main test used for diagnosis is a simple blood test which checks for a certain type of antibody which is present in people with coeliac's when they have been ingesting gluten. However, we were told that the test can sometimes be negative, when the person does in fact have coeliac's, and additionally, it could be a few weeks until the results are returned, therefore the doctors wanted to perform a biopsy.  This is where a tissue sample is taken from the lining of  intestine to look for signs of the disease. For adults this is done by endoscopy under a local anaesthetic.  Because Alex was so little, they needed to give her a general anaesthetic. After a night of no food or drink (and therefore no sleep), we eventually brought her down to theatre. Although I knew it was a routine procedure, my heart was breaking seeing Alex's little body lying in my arms and feeling her go limp as the anaesthetic was administered. However, the results were back in about 24 hours, and ironically,the blood test results came back a day later, both were positive for coeliacs.

Well, relief was the main feeling (it could be so much worse, we can handle this), followed by, confusion (what the hell has got gluten in it and what hasn't?). A brief visit by a dietician at Alex's bedside didn't help much (there were no paediatric dieticians available, so this lady was sent as she had been diagnosed with the disease herself- she was nice but a bit ditsy and vague to say the least- our experience with dieticians since has been much more positive).  Finally, after a week in hospital, the end of the beginning was over and our journey of living with a gluten-free kid had begun.

Alexandra is now nearly 4. We've learnt, often through trial and error, how to manage her diagnosis in various situations. We're still learning, and still have 'gluten mistakes', but it is alot more manageable than I'd initially feared.

I know through  Coeliac UK (  http://www.coeliac.org.uk/) that there are alot more parents out there who are being introduced to life with a gluten-free kid, so I thought I would start a blog to share some of the experiences, trials and tribulations that we have had.

I am an expert-by-experience rather than a medical expert, so please refer to other websites, or a health professional for any medical information. Please feel free to comment, ask questions or share your own experiences with me though.

Jen