When her daughter started to show signs of feeling unwell, Claire Latham was surprised by the doctor’s suggestion to undertake coeliac testing, as her daughter hadn’t eaten gluten for several years.
My daughter was quite young when we first realised that she was allergic to gluten, but she refused to take a blood test as the thought of it terrified her. At the time, the doctor we saw explained that, providing she followed a gluten-free diet, not having the test would be fine and, if she felt she needed to take it at a later stage when she was older, then she could do so then. Since that day, she has successfully avoided gluten, was generally fit and well and had lots more energy. So coeliac testing wasn’t really on my mind until a few weeks ago when she started to complain of feeling unwell and looked worn out, pale and complaining of a stomach ache. Due to my family history (a long line of coeliacs) the doctor we saw this time suggested that our first port of call would be to test for coeliac disease, and that a testing period of two weeks would be sufficient. As anyone who has completed the test will know, the thought of this filled me with dread, especially because none of our family members have ever been able to complete the test due to it making us feel so unwell and I was loathed to put her through it. Thoughts of her lacking the energy for school and normal activities sprang to mind, combined with the memories of her reaction if she had accidentally eaten any gluten in the past.
Yet, while we agreed to go ahead with the testing, I’m still not sure why I didn’t question this advice, as firstly, she hadn’t eaten gluten for such a long time and our house rarely had gluten in it, so how could gluten be the problem? I had instead wondered if she might be suffering from anaemia or another condition associated with coeliac disease. Secondly, after such a long time of avoiding gluten, was 2 weeks really sufficient to test this effectively? In fact, with the time scale required, I was almost certain that the results would return with a false negative result, which is where the test results show a negative result when the patient actually does have coeliac disease. Yet, desperately wanting to make my daughter feel well again, I agreed to the testing (as did she) and we stocked up on all of the foods that we had taken such care to avoid in the past. She was in heaven, while I was dreading it if I’m completely honest!
However, despite my concerns, I was interested to look at the current testing system in the UK and how this compared to other countries, so I posted a question to my social media accounts and was surprised to learn that in America, testing takes place over a 12-week period to ensure that a false negative doesn’t happen. The Coeliac UK website states that in the UK “As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least 6 weeks before testing.” Six weeks was the timescale that I had been aware of, so I had been both surprised and concerned when told that two weeks would be sufficient.
But my reason for sharing our experience is to share what we have learnt through the testing and what symptoms to look out for. Throughout the testing period, we found the Coeliac UK website to be a fantastic resource even providing a section focused entirely on children. The NHS webpage was also useful, and both sources reassured me that what we were reading was factually correct rather than from an unreliable source. There are, after all, a number of symptoms of coeliac disease and these are the signs to look out for (see below).
In our experience, we made the decision to stop our daughter continuing with the testing after only 4 days. She had very little energy, complained of cramps and even vomited on two occasions.
What I have learnt throughout this process
If you think your child is allergic to gluten, do not stop them eating it before the testing has been completed and a diagnosis made.
It is very difficult to achieve the correct result if you have only eaten gluten for 2 weeks. We were guaranteed a false negative.
As your child grows older they need to be able to make more decisions about what they eat. Fitting in with their friends becomes increasingly important and I was surprised to learn how disappointed she was to give up eating gluten again, regardless of how it was making her feel.
If your child is struggling with the testing process, things such as paracetamol, water and fibre all help, especially if they are struggling with constipation.
While there have been significant advancements in both the education and provision of products for coeliac disease, our experience has demonstrated that there is still room for improvement and understanding of what this disease really means for those who suffer from it. My hope is that the developments continue and things grow increasingly easier for both adults and children alike.
