Suspected Coeliac disease 4 year old

[Dawn1991]

Last year my daughter who was 3 at the time has had 2 positive tests for Endomysial IGA antibody and her TTG levels are 34.4k U/L so only slightly raised on both test which were 6 weeks apart. I’ve been to see the consultant today and they are saying she needs a endoscopy biopsy and I’m really worried about it as I've read people have had false positives on the blood test. Has anyone else had to go through this my anxiety is through the roof as she will need to be put under for the procedure!

I’m sorry to hear you and your daughter are going through this. I’m not sure that this will help, but my daughter had blood tests for coeliac at my request when she was four and they said the positive antigens on the test were enough to not do a biopsy. Could you give your daughter gluten (not ideal I know) and ask they do the blood tests again if it was a year ago they last tested? Sorry - probably not very helpful as not the same experience exactly as my daughter never had borderline / low results, but she wasnt treated at three and whilst I think she likely was always coeliac (or from v young) as she has young bones and the paediatrician has suggested this is linked to nutrient absorption - or lack of due to being coeliac - her symptoms in terms of stomach and thin hair, sticking out belly, etc, definitely got worse as she got older and it was these that led me to ask for the test. Good luck - I hope the biopsy is either not needed or goes smoothly. I’m sure there will be people along with more direct experience. There is a coeliac bit on the site I think so might be worth posting there if you haven’t already? I haven’t seen it but others have mentioned it in the past

Thank you this is helpful I just think what is the likely hood of it being false twice I just don’t want to put her through it if it’s not necessary 😩 I know she’s low in vitamin D which she’s on supplements this also was on the blood test so she’s got dark circles under her eyes but she’s not got constant diarrhoea or hair thinning x

For what it’s worth, my daughter didn’t have diarrhoea - she had tummy aches and if she was ever unwell she would vomit, but it wasn’t every time she had gluten.

https://www.coeliac.org.uk/is-it-coeliac-disease/

You can call the Coeliac UK helpline, even if you don't have a diagnosis and not a member. They can chat through your concerns. Interestingly the Coeliac UK page doesn't list diarrhoea as a symptom for children.
A colleague was diagnosed last year. They had 2 blood tests just above the normal range so then went for endoscopy. The biopsy showed more severe damage to the gut than the mildly positive bloods suggested (if that makes sense).
I was diagnosed as a toddler, waaayyyy before a Coeliac blood test was even a thing. I would have had my first endoscopy before I was 2.
I know others won't agree, but I think seeking a diagnosis is really important. Then you can look at getting other family members tested, properly followed up, access to prescription foods (if available in your area) and you can say you have a medical condition when eating out and trying to explain the importance of eating gluten free rather than saying you are 'just' gluten free.
Just make sure she is eating a good portion of gluten containing foods twice a day for 6 weeks before endoscopy. There is no point going for endoscopy if she is already gluten free as the gut will have healed. I'm sure you already know that, but in case anyone else reads this and isn't sure if it's worth it.

Thank you so much for all your advise ☺️