EB Member Karen and her family

EB Member Karen and her family

At around 18 months of age we started to question the way Rora's tummy would swell after eating. The general consensus from friends seemed to be it was a normal toddler tummy from eating too much but it stayed in the back of our minds as not quite right.

When she was nearly two she had a week of white poos in her nappy. We knew this definitely wasn't right and took her to my GP to be checked out. The GP gave us a referral to the paediatrics unit at the hospital and suggested we try removing dairy from her diet. Removing the dairy didn't seem to help. She had always had multiple soft pasty poos in a day, but so had her brother so we waited for the appointment, not having a clue what to suspect.

My baby had Coeliac disease and couldn’t ever eat gluten again. She could never just go out with her friends for pizza or live a normal life...  

I had to work so Geoff took her to the appointment when it finally arrived that September. When he came home he said that they thought that she might have Coeliac disease and had taken blood tests. Of course the blood tests were positive so a gastroscopy and biopsy were needed however it was not until early December that these happened.

After a six hour wait without any food or water (I was surprised at how well she coped) it was finally her turn. I waited anxiously while the procedure was performed which went smoothly and fast. She recovered so quickly you'd hardly even know she'd gone under anaesthetic!

Two weeks later we had a follow up appointment to get the results from the paediatric surgeon.  He explained her biopsy was positive and seemed surprised we hadn't removed gluten from her diet already.  We honestly didn't expect to get the news that she had Coeliac disease and at first I was devastated and couldn't seem to take it in. My baby had Coeliac disease and couldn't ever eat gluten again. She could never just go out with her friends for pizza or live a normal life...

I didn't know where to start with feeding her gluten free and due to finding out just before Christmas it was going to be three to four weeks before we could see the dietician.  Eventually, after hours googling, searching on Essential Baby and contacting other Essential Baby members whose children had also been diagnosed, I made it to the supermarket where I filled a trolley with products marked gluten free (wohhh, the cost!!!). Once I had the gluten free food I was able to reduce my anxiety and calm down enough to really start learning what this meant for us.

I was extremely grateful to see how far the range of gluten free foods had come in the four years when a girlfriend had a pregnancy related gluten intolerance and struggled to find any ready made foods. There were even frozen gluten free chicken nuggets – at $10 for 10!!!

Luckily I enjoy cooking, plus I have my trusty Thermomix so after stocking up on gluten free recipe books, I started learning how to cook gluten free. It was tricky at times as I had to learn a whole new way of doing things! There is no one flour that is great to replace regular wheat flour, so the gluten free cook generally needs to use between three and six different flours in each recipe to achieve the desired taste and texture. At least buying a whole two shelves of gluten free ingredients was an excuse to buy more Tupperware – colour coded to indicate gluten or gluten free of course!

We've had our share of gluten free disasters but more often than not successes too. We don't have a fully gluten free house as there's no way that the rest of the family could do without their sandwiches, but we try to keep one side of our kitchen gluten free and the other for gluten only. We did have to buy some things to help prevent cross contamination, such as a new pasta strainer, toaster and bread tin. Most things are fine when washed thoroughly (some people are more sensitive to contamination but so far we are OK this way) and we take great care in wiping down benches and tables etc. before use.

Unfortunately along the way there have been several times when Rora has eaten gluten by accident and the results seem to become more extreme as her body grows. With each exposure the villi in her small intestine recover and she becomes more sensitive to gluten.

Now even a few crumbs will make her vomit for a short time. If we suspect or know she's eaten gluten (most often it's unexpected) we know we have one to two hours before she will start vomiting so we can get prepared. She usually vomits non-stop for between 30 minutes to two hours and then, after a rest for a while, will bounce back very quickly. Some people can suffer with other symptoms (irritability, tummy upsets and pain) for up to two weeks but luckily Rora seems to be OK after her body has gotten rid of the ‘poison'.

While we all eat different things throughout the day, we tend to all eat the same at dinner time which is always gluten free. For a Mexican meal we will often have taco shells and corn tortillas (gluten free) plus wheat tortillas, but basically if there isn't a gluten free equivalent for Rora we don't eat it when she's there.  She has coped remarkably well with understanding that she can't eat the same as other people and the infrequent gluten ‘poisoning' is a good reminder for her of why, but it's still not necessary for her to miss out any more than she has to.

Parties and social occasions have been a lot more difficult as we almost always need to take her food with us. I worry about her being different to everyone else so sometimes we take food to share, but if we do we usually have to take a few things. After all it wouldn't be nice for her to only have one thing to eat at an event where everyone else has ten things to choose from!  Then when we do take food to share I worry about cross contamination with young kids putting crumbs and gluten covered hands into a bowl full of popcorn for instance, not to mention the added cost of providing several dishes for someone else's party!

Eating gluten free has added a lot of cost to our budget. Gluten free pasta, for example, costs eight times the pasta the rest of the family eats!!!  The different types of flour can cost up to ten times the cost of wheat flour! Cooking a lot of it myself does save a lot of money but it still a significant cost.

When Rora was diagnosed the rest of us had the tests to see if it was possible we had Coeliac disease too as we have a one in ten chance of having it also. Our blood tests were fine, but the gene test showed that Ryan, Emelia and I all have the genes necessary for Coeliac disease. This doesn't mean that we WILL get it, but it's very rare to get it without the gene. Ryan complains a lot of tummy pain so we are considering redoing the tests already (usually recommended for every two to four years), but I'm aware that some people NEVER get symptoms, so Emelia could be just as much at risk as he is. I had heaps of the possible symptoms so had a biopsy during 2009, but tested negative. Late in 2009 my sister was diagnosed with Coeliac disease, which is kind of nice as it means Rora has someone the same as her (and she does think it's special) and our family meals are virtually completely gluten free.

We've discovered eating out and about is an adventure. At home it's a little easier to track down places and we tend to eat out quite a bit, just to sample them and review them in my blog!  Travelling and camping is not something we've done a lot of since her diagnosis as it is trickier being in a strange place and trying to find places to eat. With preparation it is possible – if rather more expensive than we are used to when your options are limited! And if need be we can take our own gluten free bread or roll to McDonalds and get her a burger happy meal with no fear of contamination.  We are getting used to asking the important questions even though so many people have no idea what gluten is and we don't usually get the answers we're hoping for.

1 in 100 Australians have Coeliac disease and most are undiagnosed. If you or your children have any symptoms, especially with a family history of Coeliac disease or other related conditions, I highly recommend checking out the Coeliac Society website, and this article, and insisting your doctor do the relevant tests to determine if a biopsy is called for. Eating gluten with coeliac disease can lead to health issues of all kinds, including the possibility of lymphoma of the small bowel, which may be caused by any amount of gluten, so a proper diagnosis is essential.

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