Just over 2 years ago we were given some news that we had longed for but dreaded at the same time.
My baby girl had been weaning well, then suddenly, from nowhere she started to have loose stools and was drastically loosing weight. I felt so alone and helpless as a mother. The doctors, health visitors and A&E all told me I was just being a paranoid mother, it was just teething. But something didn’t feel right and 2/3 months went by and she was still losing weight.
I had a day when I decided enough was enough, I took her for a weigh-in and the health visitors saw she had dropped off the centile scale from 50 to 2. I was beyond distressed as I had been going weekly but no-one helped me with my concerns. I called my husband and said we have to book a private paediatric appointment as we are getting no where with the GP or A&E.
Within 5 minutes of our appointment, asking all the relevant questions, he looked at her wasting limbs, flat bottom, bloated belly and sunken eyes and said he could guarantee she has coeliac disease. He said he would chase her blood work that had been done in A&E previously but we should get the GP to admit her to the ward at our local hospital as a matter of urgency.
I was filled with sadness, finally we had a diagnosis but I knew that this was going to be a tough life-long journey for us and for her.
The first night in hospital was emotional. The nurses came round every few hours to give her vitamins and to check her temperature. The villi in her gut had totally been destroyed and she hadn’t absorbed any nutrients for some time. This is the effect Gluten has on a coeliac, it is not being faddy, it is staying alive and being healthy.
When we finally came home I researched Coeliac Disease and being Gluten Free on the internet, I also read the advice leaflets the hospital had given us. I went into overdrive, I went OCD on the kitchen, threw away all the cutlery, plates, cooking utensils, washing up bowel and cloths and we basically started again. We bought a new microwave and toaster and vowed to only eat Gluten Free food in our house from that moment forward, mainly to minimise any cross contamination.
We have slowly found our way with where to shop and what to buy, friends and family have been so understanding and kind in learning the difference between being a coeliac and choosing to be Gluten Free.
My daughter is now 3 and healthy but I know we still have mountains to climb. School dinners, playdates, sleepovers and parties fill me with dread, but we will cross that bridge when we get to it.
The explosion of the Gluten Free diet has been fantastic for the coeliac community but it also causes a lot of confusion. Supermarkets are now offering a wide choice of alternative substitute products; however, many restaurants are still uneducated in the processes required to prepare a coeliac friendly meal. Just because it has GF next to it on the menu does not mean its suitable for a coeliac.
For example, we recently went into a burger restaurant where they offer a GF menu with chips as an option. I asked the waiter if they had a separate fryer for the chips or if they go in the same fryer as the ‘bread coated’ chicken burgers? His answer was that as chips are made from potato they are GF, even if they do go in the same fryer. This is just one example of many. Luckily Italian restaurants are generally clued up and we have a few places we know that won’t make our little princess poorly.
Places we eat:
Carluccio’s offer a fantastic Gluten Free lunch/dinner for kids. They have pasta or can make a meat and veg dish if required.
Pizza Express as odd as it sounds, are actually Coeliac UK accredited and have fantastic systems in place to avoid cross contamination. To date we have never had a problem, they do GF dough balls and kids/adult pizzas that taste just as good as regular pizza dough.
They have also recently launched a Gluten Free Pizza and Dough Balls that you can buy in the supermarket. It has gone down very well in our household.
Waggamama are another wonderful chain that offer a Gluten Free kids meal. The duty manager takes the order and oversees the prep and cooking of the meal. This is always a lovely option to break up the monotony of Italian food, not that I could ever personally get board of Italian Food.
We have eaten at other restaurants that cater for Coeliacs, one delight in our town is Sankeys Fish Restaurant, they have a separate fryer for the Gluten Free fish and chips which is really rare but some fish and chip shops do offer it.
Where we shop:
Being a parent of a coeliac child is like being one of those obsessive American coupon collectors. You have to have all eventualities covered incase someone pops round and their child is eating breadsticks, or nursery suddenly decide they need a ciabatta roll for the class picnic in two days or a toddler group is giving out sweets at the end of term and they are laced with gluten, I need to be prepared.
Every product I can think of generally has a substitute, but are those items on sale in one supermarket at the right time you need them? Never. So you’ll find me stocking up on everything, everywhere.
Without a doubt the best Supermarket has to be Marks and Spencer. The sausages and burgers are all GF anyway, they have GF breads, pasta and a new range of GF ready meals and deserts. I know I shouldn’t be encouraging ready meals, but they are M&S and it is my main go to shop as we lead such a hectic life.
If I’m feeling like I want to cook and freeze some meals, I go to Pinterest for inspiration or I find ‘The Gluten- Free Cookbook for kids’ (Adriana Rabinovich) fantastic for quick recipes and advice. She has a whole section on what you should have in your kitchen cupboards and how to avoid cross contamination. It’s actually a great gift for a family member who maybe spending a lot of time with your child. This saves the constant nagging and feeling that something may go wrong because they didn’t fully understand what’s proper practice to avoid cross contamination.
I have genuinely found the most helpful source of information and advice to come from a Facebook group called ‘Parents of Children with Coeliac Disease, food allergies and intolerances.’
I can be thinking of going to a restaurant and unsure of how safe it is and within a few minutes of posting I will have the opinion of several parents with first hand experience. The same is apparent with recipe ideas, health concerns relating to CD and general advice on where people are finding Gluten Free food around the country or on-line. I even found a lovely local mummy and her daughter via this forum. Our daughters are the same age and were diagnosed at the same time. We tell both the girls that they are special because they have special tummies. So far that seems to be working.
I hope this reassures parents reading this that a life for your child on a Gluten Free diet is not the end of the world. You can still shop and eat out and make meals as you always have, you just need to re-think about how you go about it. The Gluten Free options are growing all the time and restaurants and staff will become more educated on issues regarding food preparation as time goes on.
My biggest bit of advice for you, family and friends is to remember ‘BROWN’
I am not a nationalist, food writer or expert on Coeliac Disease. I am a mummy who has had to spend the last few years learning about a subject I never knew I had to know anything about. I hope it helps anyone who is in the position I was in two years ago.
Mummy and Personal Stylist