New Coeliac Diagnosis - Advice please on testing children

[NewGF]

Does anyone know how it works for close relatives (especially children) to be tested for Coeliac Disease following a confirmed diagnosis in a parent and who arranges this please (in the UK)? Is it the GP or gastro team or other?

Also, do the NHS offer blood tests for the HLA gene or is it just the same coeliac screen to check tTg-Iga (checking for active disease rather than risk of developing coeliac disease in the future)?

Very grateful for any input, it's a new diagnosis of Coeliac Disease and am concerned our children might carry the gene so want to be proactive for them. I asked our GP but they didn't know the answers and suggested wait to see gastro team, but that could be months away. Thank you in advance for any advice.

You must be a bit overwhelmed with your new diagnosis and there is a lot to get your head around. My major piece of advice is to join Coeliac UK - their website and app are both hugely informative and helpful. The food scanner is very helpful when out shopping.
In my experience it was my daughter who was diagnosed when she was 16. Following that I requested a blood test for me and my son (he was18 at the time). AFAIK they will just do the antibody testing. One can't become coeliac without the gene but I don't think genetic testing is routinely offered. Basically having a first degree relative increases your risk of developing the disease sometime in your life so just being aware can help.
Good luck

Thank you for your reply and advice, I'll get that app, completely underestimated how long the shopping would take having to carefully check all the labels. The diagnosis was a real shock as wasn't having classic symptoms. Your message was so kind, I am feeling quite overwhelmed, and feel awful that I might have passed the gene on to my children. I really hope they don't have it.

Oh please don't blame yourself in any way. Not everyone with the gene will develop CD so even if they have it they may not. After DD's diagnosis- a bit like yours as no classic symptoms but a huge relief when it came because it helped to explain years of grumbling illnesses - my son and I tested but were negative. DH still hasn't bothered to test...... I was negative but am getting tested again next month as I've developed some symptoms which could be it I just have to eat gluten every day as we'd sort of gone GF by default.
Finding GF products you like is a bit hit an miss. Asda are great and good value. Tesco frozen garlic bread is the closest we've found to the real thing and their seeded sliced bread is good too. M&S have a great range inc spring rolls and samosas.
Check out mygfguide.com for great recipes. I like her bakes better than Becky Excel - but that's just me.
I would be lying if I said it isn't a pain to have to always be thinking about GF and restaurants etc but my DD is so much better now it's totally worth it.
Ask your GP for a bone scan - apparently all coeliacs should have one because calcium absorption is affected. It might take a while but keep pushing. You should also have yearly bloods and a check in with a specialist dietitian but again you'll have to be insistent.
That's a lot for now but please ask any questions you might have!

Also, do the NHS offer blood tests for the HLA gene or is it just the same coeliac screen to check tTg-Iga (checking for active disease rather than risk of developing coeliac disease in the future)?

Paediatric gastroenterologist tested my daughter for the HLA gene but the target-lga was done by the GP (and then repeated by her consultant).

The NHS might not offer it as default for all children without any active symptoms but if so, you should be able to go privately.

My DD was diagnosed coeliac when she was 10, genetic testing was part of that as it was a complex diagnosis. Following that, her paediatric gastroenterologist organised genetic testing for her siblings and we arranged ttg via GP for us as parents. My DH was diagnosed following that, and half of her siblings are also hla positive. The consultant advised that as we were all eating gf by that time, that her hla positive siblings should be kept on a gf diet until they were old enough to cope with a gluten challenge (he recommended secondary age). If negative, they should be regularly tested as it was possible to develop at any point.