Coeliac disease in children

[lisa270988]

Hi
Has anyone on here got a child with coeliac disease?
My 4 year old has recently had a tissue transglutaminase blood test result of 11.1u/ml these are being repeated to confirm.
What is the digonse process for a child? Will he need a biopsy? I really not keen on this can I refuse

My DC was not diagnosed until early teens which means they suffered far longer than necessary. In my experience the biopsy for a child that age would be done under general anaesthetic so is not too traumatic. Best get diagnosed asap as switching diet allows much better health and happiness. Your child may think how they feel is normal after eating. Sometimes it is low iron levels which flag an issue which indicates it could be coeliac disease. Good luck and best wishes.

Far better to know if coeliac as the malnutrition it can cause if fed the wrong things can cause a lot of problems.

Can't l just cut gluten out of his diet

Its better to know for sure. If you're coeliac you know to avoid cross contamination etc. Its much more complicated and expensive. If it's not coeliac, you don't want to waste your time and money on gluten free stuff.

I would rather do that why he so young then put him through it

If he needs an endoscopy for a biopsy it’s better to do it now , my daughter had one at 10 and they did it under a quick GA , she doesn’t remember it at all . You do need a definitive diagnosis really

My two Dds were diagnosed by blood only... My eldest had a comorbid disease and was routinely tested... When she was positive her sister was tested too and they were high enough and then again negative after the exclusion of gluten that there was no need for the operation...

How high where they

Don’t cut gluten out of his diet yet. Far better to have an official diagnosis and all the regular health checks that come with this. It is also better for them to know for sure as they get older.
i have 2 coeliac DC. One was diagnosed by just bloods, the other had to have an endoscopy. It is dependent on the initial blood test results.
If you have a diagnosis then others have to take the condition seriously and cater for it - school, residential trips, etc. one of my DCs friends was exposed to gluten the day before an important exam. They were able to do the exam, but it was taken into account that they were unwell during it.
The annual check ups will also test if there is any accidental exposure, which may not be obvious, but will have long term effects. This might not sound like much of a problem now whilst they are young and you have control over what they eat, but as they become older they will be making their own choices, and it is easy for gluten to creep in in unexpected places.

Also, bear in mind, once you cut gluten out, there is no going back to try and get an official diagnosis later. Your reactions become much more extreme. There is no way in the world either of my DC could eat gluten now for the six weeks you are expected to before testing. They react so strongly to even a crumb, they would never willingly eat anything which could contain gluten.

Whilst I completely understand your reluctance to do something that is possibly a little distressing for your child, you are taking a very short sighted view on this op. It is far better to confirm the diagnosis , so that going forward there is no ambiguity when he gets treatment. It’s also important from a perspective that if he develops other health issues in future then a coeliac diagnosis can help health care providers diagnose the new problem (there are various non gut related issues that can occur in people who have coeliac disease).

I promise you, once your son is older he will not thank you for not getting him fully tested, as it will be a giant pain in the arse for him with people potentially not taking him seriously when he says he’s “probably” coeliac. Sometimes to be a good parent you have to accept a little upset now saves a whole lot of potentially very serious problems later. He’s not going to remember this at all now, but if he needs to be tested at an older age he will definitely remember how ill reintroducing gluten to his diet for weeks and how rotten that makes him feel.