Part 2 – One Mum’s worry: Will my second child have coeliac or gluten sensitivity?

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I am still awaiting an appointment to see gastroenterology for my tiny tot, Amalie. But I saw the fab consultant last week for my eldest daughter, Megan. Luckily he is really personable and very patient-centred so he allowed me to discuss Amalie too. I told him what had happened – see my previous blog with the full story

It is all very complicated, but I will have a go at explaining it (with reference to NICE and the information that we have already produced here on the Safer Eating website). There are lots of long words to bamboozle you I’m afraid.

The current coeliac screen for children involves tests for total immunoglobulin A (IgA) & total immunoglobulin A tissue transglutaminase (IgA tTG) which are both blood tests looking for antibodies. Coeliac disease is an auto-immune disease. This means that gluten causes the body to produce antibodies that attack the small intestines. Antibodies are usually found in the blood and are supposed to attack things like bacteria, parasites and viruses, not the body itself. An additional test that can sometimes be done in specialist centres is called the human leukocyte antigen (HLA) DQ2 (DQ2.2 and DQ2.5)/DQ8 which looks at the genes of a person. (NICE 2015)

The consultant said that as Amalie is so little (8 months old) the tests for antibodies are not very reliable. He also said that she will not have had enough gluten in her system (we only managed to give her gluten for just under 3 weeks as she was so ill). He said that even though she had such a bad reaction, it does not necessarily mean that she has coeliac disease. A lot of babies have severe gluten sensitivity. Either way though it doesn’t really matter as gluten makes her ill so she needs to be strictly gluten free at the moment.

As she is only 8 months old and on a gluten-free diet, there are no further tests that can be done. He will see her initially in a year. He said that she is likely to carry the coeliac ‘genes’ (HLA DQ) anyway due to the strong family history of coeliac disease, but again this does not necessarily mean that she has it.

The only thing we can do from here is keep her gluten free and if we wish to in the future we can do a gluten-challenge at around 7-8 years old when a gluten-sensitivity has often improved and is no longer an issue.

I also mentioned that as well as Amalie, I too had a negative result in 2010. He said that I must have been in the few percent where the test failed. Let’s hope Amalie does not have my ridiculous bad luck…..

By Karen Woodford – coeliac & mother of 2 gluten-free girls

 

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