Conquering Coeliac's Disease

Last year we were faced with the scary prospect that Emily might have something wrong with her. That she might have some sort of syndrome or disorder. In fact, my doctor had referred me to a specialist to check for dwarfism.

I kind of laughed about the whole dwarfism idea but deep down I was worried that the referral and visit to the specialists at the Royal Children’s Hospital would reveal something nasty and life threatening.

Why were we worried, why did we go to the doctor and seek that referral? If you have seen my two beautiful daughters (who are 21 months apart in age) you would agree that they could be mistaken for twins. I am constantly stopped in the shops and asked if they are twins. Sometimes when Em sees an adult at the shops staring at her and her sister she will automatically say “we aren’t twins, she’s three and I’m five”.

When you look at my girls you can see that they are related but what people also see is that they are pretty much the same size. This is one of the things that lead us to the doctors. Emily is quite petite and very small for her age.

The main reason we went to the doctors was the fact that Emily, who at this stage was 4 years old, had never had a firm number two in her life. I went to the doctors because I was sick of wiping my 4 year old’s but!

After the first visit we were sent off for a blood test that was going to check all sorts of things but the most worrying screen was for chromosomal disorders. I carried a small niggle in the back of my mind that something could be wrong, she is going to have some nasty disorder that is going to affect her whole life, she is never going to grow any bigger, she is never going to be able to wipe her own bottom!

We had an appointment to go back to the hospital in a month’s time. We had been informed that if it was something serious, we would get a phone call before that time. As the days ticked by I started to feel some relief because we hadn’t had a phone call and then about a week before we were due to go back to the hospital for the results, we received a phone call from the paediatrician.

I was sitting at my desk at work when my mobile rang. I hurriedly answered it and heard, “This is Dr Robyn from the Royal Children’s Hospital” and honestly, my heart stopped or skipped a beat or did something to make me feel funny and then I felt this white heat spread over my whole body. Oh no, the hospital is ringing me! It must be bad.

And then she says, “We have the results back from Emily’s tests and it looks like it is Coeliac’s Disease”. The doctor then talked for a bit more but honestly, I wasn’t listening, I have to say that all I was feeling at that stage was relief! I was so pleased it wasn’t some awful disorder. It was the best possible result (after not having anything wrong and just being petite with runny poos!!).

Now, 12 months on we have had the formal diagnosis and have been feeding Emily a gluten free diet for six months. We have been very strict with Em’s diet because feeding a coeliac is the same as feeding someone with a dairy allergy. While some coeliac’s don’t have a visible reaction, lots of damage is done to their insides when they have gluten and that has to be avoided.

We have seen some changes in Em, she is growing more quickly and yes, she now has firm number twos! We have just been back to the RCH for follow up blood test results. I have been waiting for these test results. These results will reveal the truth.

Have we been strict enough? Do we need to do separate cheese, separate margarine, stop getting hot chips from our favourite place that cooks crumbed fish in the same oil as the chips, do we have to stop feeding her foods that contain the warning “may contain traces of gluten”? We have already made so many changes; do we have to make more?

But the results were fantastic - normal! Hooray, we have conquered it, we are doing the right things and her body is working the way it should. She is no longer anaemic and her iron stores are good. I can’t tell you how much of a relief it is.

Well done my brave Emily! There are times when you will have to sacrifice and be sad because there are things you can’t have but you are healthy and growing because of it.