**Parents of coeliac children**

[Blossomandblooms]

My DD was diagnosed as coeliac last April (2022) when she was 6. She was diagnosed via blood test, and her TTGA level was over 250. We started the GF diet and her main issues (headaches, heartburn and horrible stomach pains and diarrhoea) soon subsided. We saw the consultant in December and her TTGA level was down to 26.

Recently, she has been getting random episodes of diarrhoea and heartburn - literally before her diagnosis, the heartburn was around once per week, now it's probably once per 3 months. In the last few weeks however, she's had it 3 or 4 times.

I've spoken with the dietitian who has recommended that she has a blood test to check her gluten levels as she shouldn't be experiencing symptoms of glutening if she is GF. As a household, we are now GF as my DS is also coeliac (diagnosed after DD but never showed symptoms and he was diagnosed via OGD in Sept 22).

DD does have school dinners and we have been reassured countless times that the kitchens (who make and bring in the food to the school) are preparing it all in a separate area / it's all GF. Thinking back, I'm sure her symptoms started when she went back to school after Easter half term, but the school are adamant they are giving her GF food.

I know it can take up to 6 months for the gut to repair, but does anyone have experience of their VERY coeliac child still experiencing glutening type issues even after they go on a GF diet? We are very strict at home with GF but I don't know if perhaps because she was so poorly pre-diagnosis, that her gut is taking longer to heal? She has been GF for 13 months now. She has always had a bad tummy - when she was little she would have lots of diarrhoea (they classed her as having toddler's diarrhoea).

I have never heard of this and we do use dried fruit in baking.

Glad you got to the bottom of it. My DS (teenager at the time) couldn't be bothered with school meals after diagnosis and either took packed lunch or bought it out from trusted sources.

How compliant are your teenagers? I think this is going to be a hard sell. She’s not going to want to change her diet!!

I was diagnosed years ago. Tbh i know you want your child to feel included but personally i would do her a packed lunch for school. Years ago i worked in school kitchens and cross contamination is a high risk xx

@Loubelle70 thank you, yes I don’t think the school really understood it to be honest - my DD was given a bowl of pasta (gluten) and they didn’t tell me as they said it wasn’t a big deal… DD (only 7yo) is remarkably switched on about coeliac disease and is able to know what she can / can’t have and will double check ingredients on packets. Since we stopped the school dinners she has been so much better - I will keep both my coeliac DC as packed lunches going forward. It’s a shame as DD is a very picky eater so I thought giving her school dinners will help her with exploring different foods but I’d rather have the peace of mind that she is eating GF food from home x

It’ll be cross contamination, possibly at home but very likely at school. They’ve shown that they can’t be trusted and I’d be converting to pack lunch.

Sorry, seen your update. No surprise. Glad she’s improved

Thanks @VeloVixen - yes we are totally GF at home (with both DC being coeliac it’s easier for DH and I to go GF as well). Eating in restaurants can be a nightmare - one popular Italian food chain said to us that DH and I were “pandering to DD’s fussy eating” when I said she was coeliac 🤦🏻‍♀️

That’s bad. Normally chain restaurants are quite clued up on it, get the managers to take orders, clean pots, work surfaces, etc. they understand cross contamination. It’s the independent places I worry about

My coeliac daughter and I eat at the Italian chains regularly and have never had an issue .

The coeliacs in my family have never had issues at Zizzi or Pizza Express.

My dd is coeliac and I could have written this 4 years ago. It was indeed the school dinners- stock cubes with barley, soy sauce, gravy, wheat coated oven chips, sausages with barley and rusk…ALL classed as gluten free. You simply can’t trust it. Just don’t do school dinners. My friends little girl who is 6 has just been through the same struggle and yes it was the supposedly gluten free school dinners!!!

@coeliacmum yes we found Pizza Express to be really good and clued up. It was actually a F&B’s - the server said this comment to us so we ended up leaving as we couldn’t trust that the food was GF.

@MarthanotMarfa exactly, the school said the kitchens (off site) were happy to do GF but it was obviously more stress for us because DD was constantly poorly despite their reassurances that the food was GF. We actually ended up in A&E after one school lunch and the docs thought she had a bowel obstruction as her stomach was so painful and she was sobbing. She’s had packed lunches since we saw the GP back in June and we saw from a blood test that here TTGA levels were raised again, and so far no symptoms.

We were so lucky with primary school. They cooked on site and the head of the kitchen had a dd with coeliac. Didn’t realise at the time how lucky we were. Also not had a problem with any chain restaurants. The problems we have had have been with independent pubs who are generally well regarded. The last gluten poisoning was a pork belly, we were told it was gluten free but assume they forgot they used flour to dry it before cooking.