Hi Wordsmith
DD1 was diagnosed with coeliac at 2.8. I'm not sure what her TTG levels were but she had an endoscopy to confirm the diagnosis. I think with children they prefer to do these under general anaesthetic. I was a mess frankly - I started crying when the (extremely gentle and nice) anaesthetist started to tell us what was going to happen. Fortunately DP was there and when we actually went in for the procedure, he held DD1 on his lap, reading her a story while the anaesthetist held the mask under her nose till she was knocked out, which only took a few seconds. To warn you, they go extremely floppy once they're under, which I found quite scarey.
When she woke up, she was extremely distressed and disoriented and this lasted about half an hour. Once she was fully awake, she was fine, hungry (she hadn't eaten since the day before because of the GA) and watching videos. We saw a dietician in the hospital that afternoon, who gave us her initial prescription and the consultant said she was almost certain that coeliac was confirmed, but that she would phone to let us know within 2 days, once the tests had been done on the biopsy. We were home by teatime.
We started her gluten-free diet the next day and within 2 weeks she was a transformed child. Her complexion, which had been grey, was now pink and healthy-looking, she was no longer constipated, she had energy and most importantly, she ate! It used to make me cry to see her shovelling food in, as it had always been such a struggle to get her to eat anything before.
In the first year she gained over 3kg (over 30% of her weight at diagnosis) and grew 12cm! Following the gluten-free diet has not been nearly as difficult as I anticipated. You get quite a lot on prescription - bread, biscuits, pasta, pizza bases etc - and all the supermarkets do brilliant free-from ranges now (Sainsburys is our favourite). You will need to ask your DS's pre-school to make gluten-free playdough - they probably make it themselves anyway, and it's no harder, just different ingredients. There's a recipe for it on the coeliac website. Also, if they give the children a snack, you will need to provide gluten-free biscuits for him. I always used to find out in advance if they were planning any cookery sessions and provide gluten-free flour or cake mixes (which you can get on prescription). In the end, pretty much all the cooking they did at DD1's pre-school was gluten-free. Occasionally, they would make sandwiches and I would send in her bread and butter etc so she could do her own.
One thing which came as a surprise to me was the need for a second toaster, separate baking tray, separate butter, marmite, jam etc - a crumb of 'normal' food can cause a reaction so you need to keep things separate. But even this has not caused as much difficulty as I thought. If DD1 is invited to a party, I try to find out in advance what sort of food they are having and give her a little picnic of something similar and always take one of her cakes (the Sainsburys g-f brownies are gorgeous) so she can have that instead of birthday cake. I always bake her birthdays cakes (which my family now prefer!).
I have rambled and rambled , I hope there is some helpful info in there. Please don't despair, your son will soon be healthy and well. If there is anything else you need to know, don't hesitate to ask - if you'd like to email me I'll give you my address.