Five years ago I was on the receiving end of a coeliac diagnosis with the flippant advice to “have a piece of cake at a celebration if I fancy”. Wow, that doesn’t sound too serious! Fortunately it was soon after my diagnosis that I studied clinical nutrition and then holistic health coaching and that piece of cake has not yet passed these lips.
Here’s my family’s story of how my nine-year-old daughter, Imogen, went gluten free and never looked back.
This divine little miss was a magnificent baby (of course), but from very early days she experienced chronic constipation. I mean, the sort where motherly intervention was sometimes required to help with elimination. That was certainly not something I ever envisioned when thinking about motherhood and was a true test of ‘get your gloves on’ motherly love.
A few years later we noticed some rather challenging and quite erratic behaviour, along with bloating and a tendency to be easily annoyed. This was right around the time of my own diagnosis and with limited understanding about the role gluten can play in our health it was hard to tell if she wasn’t just a naughty kid who inherited a slow bowel.
On my doctor’s advice we got blood tests for anti-tissue transglutaminase, to see if she was a coeliac (I didn’t know about the gene testing at this point). After a somewhat vocal and rather dramatic blood draw, and the consequent reward of a gorgeous little bunny, we waited with great anticipation for the results. Negative. Now this is awesome, right? But why is she so ‘out of sorts’ and can we pleeeease do something about this behaviour?
Overwhelmed with a lack of knowledge and the thought that ‘it could be anything’ we just kept on keeping on. It was some time later I decided to get back on the investigation trail to figure out what was amiss.
After a consultation with our GP we got the genetic test done, which was positive (rest assured the second blood test was equal to, if not more dramatic than the first). You probably know that a positive gene test is not a diagnosis but the doctor concluded that with three generations of coeliacs, myriad of symptoms and positive gene testing, that was enough to put Immy on a gluten-free plan.
I was happy. It was as simple as giving her the same gluten-free food that I ate, right? What I hadn’t considered was all of the social interactions, the psychology of not being like the other kids, the ongoing education about how to make great choices when not at home, and so on. So I bunkered down and wrote a book full of strategies about how to confidently raise your gluten-free kids. This was one of my proudest acheivements and was an exciting contribution to the gluten-free world.
Outside of these lifestyle factors was the one obstacle that I had struggled with (confession time). We have a split family and every second weekend Immy goes to her Italian grandparent’s house with her dad. Here she would be fed some of the best pasta you’ll ever taste (so happy I had it before my diagnosis). I actually didn’t know this for a long time and at home I was confidently and somewhat fastidiously making sure she was gluten free. It turns out that yes she had been having gluten the whole time but I never knew! Insert feelings of betrayal and a feverish dose of anger.
Her dad believed I was over-reacting as he thought her to be a perfectly happy, healthy little girl. Of course he didn’t see the tummy aches that gripped her in the days following those weekends and this is where delayed symptoms make it a difficult case to present. I regularly asked about her gluten-free food and was told everything was fine. When I found out she was having doughnuts, pasta, pizza (apart from the fact that I wouldn’t recommend these foods to anyone, let alone a sensitive child) I was seriously annoyed and determined to get to the bottom of it.
Following a very nervous pre-biopsy wait and feeling torn about the impending results, Immy was biopsied and the gastroenterologist advised that she tested negative for coeliac disease. To be honest I was a bit disappointed, but of course also relieved. I know without doubt that gluten is not her friend – for whatever reason. Having studied holistic health now and specifically gluten for four years I’m confident that she is a much happier, healthier, balanced and delicious little girl when she eats clean.
There are no longer any false pretences when it comes to what she eats when she goes to pasta-land every second weekend. Mostly staying gluten free seems to be working for her, and her body certainly lets her know if there’s been an over-indulgence.
As time passes she is being positively influenced by what she sees at home and now makes better choices for herself. It sure does feel like it’s been a rollercoaster ride and I know so many families who experience their own gluten rollercoaster.
It’s not unusual for people to spend many years attempting to find the answers they seek. It’s reported that 6 – 10 years is the average time it takes for a person to be accurately diagnosed with coeliac disease.*
Trusting your GP or holistic health professionals, trusting your intuition and ensuring everyone is on the same team is crucial in getting the right advice and accurate results.
Words by: Bee, Wellness Mentor wellnessmentor.com.au
HERE ARE MY TOP TIPS FOR GETTING THE ANSWERS YOU NEED AS QUICKLY AS POSSIBLE:
- Trust your intuition. You have it so PLEASE use it. If something doesn’t feel right, it probably isn’t.
- Go doctor shopping. I don’t mean swap doctors all the time (this can be troublesome) but if your doctor is dismissive, patronising or simply doesn’t seem to know enough about something, search for a doctor who will listen and pay due respect. Ask friends and family for recommendations or find people who have already got a diagnosis and see who they sought advice from.
- Go online. I’m not recommending you trust Dr Google, but there are thousands of brilliant websites (often from people who have already gone through their own gluten experience) where you can learn all about the process of diagnosis and also get great lifestyle tips.
- Keep a diary. Being able to supply your doctor with a diary listing foods eaten, symptoms, bowel movements and behaviour can be a super powerful tool.
* Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center ** It’s worth noting that while the anti tissue transglutaminase test is the gold standard, it is reported very often to be false negative as well as only testing for a reaction to gliadin. This is according to Dr Tom O’Bryan, who also advises that only about 50% of coeliacs react to gliadin, while the others react to other gluten proteins like seculin, avenin and hordein. With this in mind the testing is ambiguous, at best.