Coeliac? So what's the big deal?

We've become rather obsessed by our new-found love of baking so many of my posts have been focused on that side of things but with this post, I would like to get back to why I started this blog - to help share information about Coeliac disease so that all Coeliacs, but especially little ones, can live their lives like "normal" people do and not have to ring around 10 restaurants before they find somewhere which might be suitable to go to.

Unfortunately, a lot of people still seem to think that Coeliacs are just "fussy eaters" or people who are following a "fad diet", which isn't the case at all. “You're a Coeliac, so what’s the big deal?” some might say. “Just don’t eat loads of bread and pasta – you can get gluten free stuff like that anyway can’t you?”

Well, for starters, even a very small amount of gluten can immediately and significantly affect some Coeliacs and the longer term health of any Coeliac is potentially being compromised by consuming even just a very small amount of gluten. By law, a product can only be labelled as gluten-free if it contains less than 20 parts per million. Anything more than that is not considered safe for a Coeliac to eat. That shows how important it is to make sure that Coeliacs do not eat anything that contains gluten. As I said, some Coeliacs are immediately affected by contaminated products be that through feeling bloated, to being sick or experiencing other digestive problems but the effect which I find more worrying (especially as a mother) is the longer term effect. Research suggests that people with undiagnosed Coeliac disease or those who are not following a strict gluten-free diet are at a higher risk of long term complications including:

• Osteoporosis (a condition which weakens the bone, making them fragile and more likely to break; spinal fractures are a common cause of long-term pain).

• Ulcerative jejunitis (this is when the small intestine develops multiple ulcers that do not heal).

• Intestinal malignancy (cancer of the intestine).

• Vitamin D deficiency (as a result of the intestine not absorbing nutrients properly, the body becomes deficient in Vitamin D; this is responsible for maintaining healthy bones, teeth and muscles).

• Iron deficiency (as a result of the intestine not absorbing nutrients properly, the body becomes deficient in iron and as a result the person becomes anemic - tiredness, lack of energy and shortness of breath).

Now, I am not trying to tell anyone how to live their own life and, as an adult, a Coeliac might decide that the short term effects are not a bother to them, that they are willing to take a gamble on the long term effects and that they do not wish to follow a gluten-free lifestyle. That is entirely their prerogative and is not something I would ever comment upon. What does upset me, is when I take my daughter to eat somewhere and no one (including the chef) has a clue what I'm talking about when I ask what on their menu is or can be made gluten free. Even worse, is when I am told that the food is “gluten free” but my daughter is sick the next day. That to me is not fair and is something I really want to change.

As an adult it is bad enough when you have to send food back because it is clearly wrong or in cases as friends have shared with me, when someone from the kitchen has come running out and swiped their plate away because they've realised that it's got gluten in the ingredients, but to a 4 year old, when everyone else has their food, it really isn't fun having to wait for yours to be re-made because something has gone wrong. And by gone wrong, I don't mean something obscure in the kitchen process has come to light, I mean, someone bringing out a "completely plain vanilla ice cream, with no sauce, no sprinkles and no cone, in a bowl" in a bowl but with a cone pressed into the top of the ice cream. Not only is she not allowed the cone, she now has to have it rubbed in her face that she's not allowed it and wait whilst they go away and bring a fresh one.

As I say, I realise that the only reason I am so acutely aware of all of the minute details and technicalities around food preparation and ingredients is because my own daughter is a Coeliac but that is why I so want to share this information and really get more eateries on board. As I said in one of my early posts, this isn't an obscure, minor illness which affects a small smattering of people, it is a significant disease affecting 1 in 100 people in the UK and Europe. That's 646,000 people in the UK alone (approx 13,000 people in Essex and over 10,000 in Surrey). That's a lot of people for the hospitality industry to be turning their back on - Coeliac UK estimate that the industry is missing out on an estimated £100 million worth of business a year!!!!

So to share some more of my learnings... there are the obvious foods which will spring to mind when you say, you can't eat gluten:

• bread

• pasta

• cake

• biscuits

• crackers

• pastry

• pizza

• breakfast cereals

• breaded products (e.g. nuggets, fish fingers, onion rings, breaded ham)

• ice cream cones

but then are the things which might not be so obvious:

• sausages

• burgers

• crisps

• seafood sticks

• gravy/stock

• stuffing

• ice-cream

• chocolate

• sweets

• sauces (e.g. tomato ketchup. mayonnaise, soy sauce etc)

• marmite

• barley water

• some alcohol (including ales, beers, lagers - not a problem for us just yet!)

and then there is cross-contamination:

• toasters

• cutlery

• deep-fat-fryers.

At home, we have separate cupboards for all of our gluten free food and we always prepare it separately. We have separate tubs of butter/spread and we always clean knives before they are put in jam pots etc.

As I have said before, dealing with Coeliac disease at home is pretty simple. The variety of products available in supermarkets is increasing by the day and it is very rare that we aren't able to buy or make pretty much whatever the rest of us are having (and if we can't we wont have it). It is just eating out where there is no much more that could be done.

Coeliac UK do a great job in this area too and have worked with many restaurants who have gained accreditation as gluten free food providers which means that they not only serve food with no gluten containing products but that the food preparation processes etc have been deemed suitable for Coeliacs.

That said, even if a restaurant has received accreditation, I am still unsure as to how far throughout the workforce the teaching goes. A couple of months ago a restaurant chain was advertised in the Coeliac UK newsletter as having received accreditation. It was during the summer holidays, we were out for the day so I thought great, this will be somewhere different to try that I can count on as being Coeliac friendly. Sure enough, they had an entirely separate gluten-free menu which was great and they were able to cater for TLC, but when we looked at the sauces on the table they all had gluten in them! The owners of the chain have obviously gone to some efforts in seeking accreditation but haven't really thought things through well enough to cover off the details. Does that mean there are also things in the kitchen which aren't being thought through properly....? To make matters worse, when we asked the waiter whether they had any alternative sauces which did not contain gluten his response was "why is everyone so obsessed about Coeliac disease at the moment"!! He went on to say that he didn't even know what a Coeliac was until earlier that day when someone else had made inquiries and he had googled it......!

If you want to eat out, you need to call the restaurant in advance to be sure they can cater for you. Sometimes even when you do that it doesn't work out. I try not to make a big deal when we're out with The Little Coeliac, I don't like her to feel "different", so I always call in advance. As I mentioned earlier, I now know what questions to ask so as to minimise the risk of disappointment on arrival but in the earlier days, I would call and say something like "hi, my daughter is 2, she is a Coeliac so she can't eat gluten, do you have a menu which would cater for her", to which the answer would usually be "yes, of course, we can cater for her". When we arrived, we would find that the options were essentially chicken salad or cheese salad. As an adult, you may be able to tolerate that but as a 2 year old, I don't think she would be unusual in not being a fan of salad! As I began to hone my questions, I would ask, "Hi, my daughter is 4 (we took packed lunch for a long time!), she is a Coeliac so she can't eat gluten, do you have anything on your menu which would be suitable for a child of her age? For example, plain grilled chicken and chips?", to which the answer would be "Oh, I'm not sure, let me check" - that's a better response as at least it's more thought through! They would come back and say "yes" I would ask "are your chips definitely gluten free?". "Well yes" (in a slightly mocking tone) "they're just potatoes". So I would go one, "Are they cooked in their own separate fryer or in oil which has been used to cook other gluten-containing food such as nuggets or onion rings?". You wont be surprised to hear that on checking, they are in fact cooked in the same fryer as all of the other fried food so would be entirely unsuitable for TLC. I am painting a negative picture and things are getting a lot better. Recent law changes have meant that places are generally a lot better now and some can provide you with fantastic allergen information which is brilliant. There are however still a LOT of places that haven't got a clue and don't make you feel very welcome!!

Anyway, calling in advance is fine and we usually get to the right place but when you are out and just need to grab something, it is really difficult. It is getting better and places like Starbucks have started offering gluten free wraps and snacks but it would be great if it was wider spread and child friendly!! A little person doesn't want a chicken salad wrap! They would much rather a nice simple cheese or ham sandwich! Come on sandwich shops!! Tap into that £100m business you're missing!! :)

One of the more surprising challenges recently has been ice cream. We went to another event over the summer holidays which was a children's event at a race course in Surrey. It was a fantastic day and really well organised - except for the ice cream vendors. There were 3 separate ice cream vans at the event, two weren't able to confirm whether or not their ice cream contained gluten and the third only stocked ice cream which contained gluten. It was a really hot day, everyone was eating ice creams and The Little Coeliac had to have a really naff, old-school lolly. Not even a "fun" multi coloured one - just a plain orange one. Boo!!! It wasn't the vendor that knew their ice cream contained gluten that bothered me - sometimes that's going to happen and we just have to get on with it but it was the ones who just didn't have a clue what they were selling that really got to me. Surely we can do better than this?

Anyway, we were sitting at dinner that night and we were talking about what I could/should do about our experience and someone jokingly raised the idea of starting a blog. If you know me, you will know how much of a joke that sounded. :) Well, I thought about it that night and some more the next day and decided that I can't just moan about the lack of gluten free food available on days out, I need to do something about it and so that is why this blog started. My aim is to blog about places that I visit that are great, interview owners of some of the brilliant places locally to both me and my wider family to share their stories and try to understand why some are great and some are not - what are the barriers and what can we do to improve things for the 646,000 Coeliacs out there?

So my ask of you? Spread the word! And if you know of someone who might be interested in sharing their story with me, let me know, I would love to speak to them!

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