Why I got my daughter tested for coeliac disease (but not my son)
Given I have coeliac disease, I've always been concerned one of my children might have it, too, and if you're in the same boat, you may be wondering what tests are involved.
Firstly, if you've got small children, you may be told it's best to wait until they're older to have tests done unless they show symptoms of coeliac disease. For this reason, I've never had my 8 year old son tested.
However, my 7 year old daughter has had potential symptoms since the age of 2.
It doesn't mean it's necessarily coeliac disease but obviously I'd like to rule it out.
If you've read previous blog posts, you'll know we're at the stage where she's had a few tests done but nothing conclusive (and twice been negative for coeliac disease via blood tests).
But! This doesn't mean (a) she's not coeliac or (b) we shouldn't continue testing.
The fact is, she's still presenting some symptoms, and although they're not awful (she's still growing, happy and able to enjoy life) they're not to be ignored.
So we went to the Children's Hospital today to investigate the ongoing tummy problems my daughter's been having, along with (hushed voice) loose stools and a test that showed she's low in iron.
My daughter loved having all her stats done (weight 25.5kg, height 128.5cm, blood pressure etc) and then saw the specialist. She's an autoimmune expert who spoke very reassuringly about everything and did a few routine tests (like feeling my daughter's tummy).
To cut a long story short, she's referred her for some blood tests to check several things including an endomysial antibody test, which for some people is the first indication they have coeliac disease as the other tests may not pick up any issues.
Of course, blood tests aren't 100% accurate. In fact, I attended a lecture recently where we were told children have less accurate results with blood tests than adults and the tests are only 88% proof. But having a biopsy (which is considered the gold standard of tests) isn't a route I'm happy to take for a 7 year old because she's so little.
I'm also keen to explore other theories (after all, there's only a 1 in 8 chance she has coeliac disease according to genetics). So I asked if the doctor had any other theories.
Reader: she said it might be an issue with lactose. Lactose! I am now clinging to the hope that it is temporary lactose intolerance!
But, until we can rule out coeliac disease, we need more testing.
You've probably already realised she's been told she must carry on eating gluten (otherwise the blood test might come out as a false negative) so afterwards, she had a giant cookie at Costa. I forced myself to join her with a treat and have one of their gluten-free chocolate brownies, which was half price because of its best before date (today). Yay for discounts!
Plus, we don't normally get the chance to do something together, so it was lovely to get some Mummy/daughter time (this is what I tell myself every time we have a hospital appointment).
We then we got a very hot bus home (in contrast to the cold outside...not sure which was worse).
So what happens next?
The hospital will call with potential dates for the blood tests (better than last time - a frustrating two month wait where I phoned twice to chase up and then - after being told we were in the system - called after Xmas and was told the appointment had been made (but no-one had contacted me)!
So thank goodness for calling (I always recommend this to clients; far better to be on first-name terms with a receptionist because you're keen to move things along than be waiting, forgotten in the system).
If you're wondering, the appointment letter did arrive in the end but only with ten days' notice - not long given I had to take half the day off work to fetch her from school and get her to the hospital.
When those blood tests are done, we'll need to put cream on her arms to numb them so the blood can be taken. In the past she's found this really funny (this is my daughter's 3rd set of blood tests for coeliac disease - the previous ones were in 2023 and 2019). The not-so-funny bit was when she got worried about the needle so last time I distracted her by focusing on a massive toy tomato on top of a tele in the ward.
Until then, we must wait. To me, the waiting part is arguably the worst bit because it's all guesswork, but at least we're taking action.
What about you? Are you in a similar situation? I'd love to hear your thoughts below!
We are currently waiting for the bloods to come back for my 4 year old as she suffers from a bloated tummy and on/off constipation- I got diagnosed when I was 32 and no one else in my family has it !