Hi OP. You might like to ask Mumsnet to move this to the Autoimmune Disease page.
Join Coeliac UK.
Make all the family meals GF - less chance of cross contamination and it will make your child feel less different.
Play dates round other people’s houses will be safer if they don’t eat - people tend not to understand that even a crumb from a chopping board will make your child very sick. This was very difficult for me and my child to accept and it has been very difficult and upsetting.
You will find people are happy to be inclusive about many things but sadly not about Coeliac disease - they can regard it as a fad that the child should grow out of.
Be your child’s advocate at restaurants - always speak up for them, it will make it easier for the next Coeliac that comes along.
Educate people wherever possible - repost Coeliac UK pays on your social media page. Not many people realise it’s a serious auto-immune disorder, most thing it’s just a fussy diet.
Don’t worry about the TTG levels taking a long time to settle. It took my daughter 4 years to come down to normal. Normal TTG levels vary across the country so it’s different to compare levels on social media. In our area normal is less than 20. DD was 4000 at diagnosis but that may be low or high to someone in another area.
Have as much iron in the diet as possible. DD was less than 10% of normal iron levels at diagnosis and she could hardly walk 50 yards. She had to be excused from PE for some moths as she was so breathless on exertion. Red meat is the
best way to get iron into the body. My DD is still on iron supplements 5 years after diagnosis.
Your child will need lots and lots of calcium for the rest of their life. We use Osteocare liquid from GP. Many Coeliacs are lactose intolerant, try almond milk (supermarket own brands as they are cheaper plus have calcium added) as it’s sweeter so easier for children to tolerate.
Many Coeliacs are intolerant of oats as the protein is very similar to gluten. Unfortunately many GF products use oats as a substitute for wheat flour so watch out for the ingredients.
The Coeliac UK app is very good in the early days when you aren’t confident about shopping. You can scan the barcode and it tells you if it’s safe.
Be careful eating out as many cafes and restaurants have gluten free food but it’s right next to muggle food so the crumbs cross contaminate or they use the same serving utensils. Stick to Coeliac UK accredited restaurants in the early days and eventually you will find others locally that you feel confident in. Coeliac UK have a good eating out app. Trip Advisor is also useful when you are out and about.
You will need separate chopping boards as tiny crumbs of gluten can get stuck in the cracks.
Get some GF stickers for your home and put them on things in the fridge eg open packets of ham, jam, pesto etc.
You will need separate toasters or use toaster bags. Toaster bags are useful if you stay away.
You will need separate butter/spreads/jam etc. Plaster them in GF stickers and educate other household members.
If possible keep gluten to a separate in your kitchen. All our family meals are gluten free but the muggles in our family still have gluten sandwiches and cereal - we keep these in one section of the work surface.
There is a free-from section in the supermarket but you can use plenty of things that are gluten free in other sections but not labelling as such eg pesto - there is special gluten free pesto but normal supermarket own brand pesto is gluten free.
Avoid all ‘may contain’ foods as they often do contain.
Gluten free food is very expensive -3-4 times muggle equivalent. It’s because there is not the same demand/economies of scale, plus it costs to get certified as gluten free. Some parts of the country you can get bread and flour on prescription. Otherwise use supermarket own brands wherever possible.
Marmite has gluten in but supermarket own brand yeast extract is gluten free.
Becky Excell has some great cookbooks plus a good website - gluten-free cuppa tea.co.uk
Join your local Facebook Coeliac page. If you can find other mums and kids it’s very helpful.
Good luck. You will soon be an expert!