Coeliac diagnosis - diet whilst waiting for consultant

[curlywurl]

My son has suspected Coeliac disease. The GP rang with test results last week and said cut out gluten straight away. Everything I have read since says keep eating gluten whilst waiting for the consultant appointment.

Does anyone have recent experience of this? I have tried calling the hospital and GP but got no more information so far.

His ttg result was 687 so it seems very likely to be Coeliac (I read that over 100 is a strong positive result).

Also does anyone know if he is likely to need an endoscopy for diagnosis with that result? (early teens age group)

No bowel or stomach symptoms but chronically low iron levels and on last bloods low calcium and vit D too. Hopefully we now know why vitamin levels are so poor.

My instinct is to remove or at least reduce the gluten but obviously don't want to delay diagnosis by having to start again.

Any advice is appreciated. We did not expect the positive result so it's a lot to take in.

It's secondary school. I've not even had confirmation that there would be a jacket potato available everyday so he could potentially go hungry if we try the canteen! We're fine doing packed lunches it's just more to carry on PE day and he has quite a long walk. Also it would be nice to have the option to use the canteen with friends but it's not the end of the world and he's not making a fuss.

I suggest you contact the school SENDCO. strange as it may seem, this comes under the D. They should be able to liaise with the catering company (usually outsourced in secondary schools ) to find out what their provision is. They must have provision - they are just not very good at advertising it! My DD has a flag on her account so the system does not allow her to buy anything with gluten in. But they always have something available.

Wow that sounds good is that at secondary school? We don't have the official diagnosis yet as not seen the consultant. Would we need to wait for that before contacting the SENDCO do you think?

I would get in touch now so that everything is in place once the diagnosis is confirmed. These things can take a while! It may be that your school has a medical officer - the sendco will know who the right person is if it is not them.

Thank you we'll get on to it then. My husband thought we needed the diagnosis first. You are right it's likely to take a while!

I'm probably repeating other posters but recent NICE guidance after COVID was no endoscopy for children. My DD was diagnosed 2 years ago on bloods & symptoms only. She had repeat blood test 6 months after being gluten free and her level was 4! After being well into the hundreds before.
ASDA is your go to for good value staples like pasta cereal etc. their cook in sauces are good too. They do a sandwich bread which is good. BeFree bread rolls are great especially paninis
I find that certain supermarkets do some things which are really good - it's just trial and error really...
Schar pizza bases are good and Sainsburys do a really nice margarita pizza.
You MUST join coeliac Uk. Their advice is great, they produce info for schools and the app is fab when you're scanning food to check if it's ok.
Always make sure he has a snack bar on hand when he's out as it'll prevent the hangriness!
Good luck

Re school meals - my DD is in sixth form and we worked hard with the caterer to sort food but it just didn't work out as the cross contamination meant that choice was extremely limited and not very nice. In the end she was able to take her own as they have a microwave and kettle in the sixth form centre. Pot noodles and paninis are good!

That's great to hear that ttg levels can go down so much in 6months. Our consultant appointment has come through and that will be about 6months so hope they'll test again to see how well we are doing with gluten free.
Yes I'm thinking of joining Coeliac uk. The app might make food shopping less miserable for my son. I've only taken him to the supermarket a couple of times but it was a bit sad especially when he was looking at a beautiful gluten filled cake slice in a box!
Any recommendations for a good non spicy pot noodle replacement? They are a favourite camping/hotel room standby.

Tesco do some free from pot noodles. They have their own brand ones but I much prefer the Itsu ones. Can be pricey (like everything else gluten free tbf...) though

www.tesco.com/groceries/en-GB/products/300513787

@curlywurl how did the appointment go? Is there any follow up or was it a straightforward diagnosis based on the bloods and gluten free from now?

Thanks for asking. We finally went a few weeks ago. It was 6 months from referral to 1st consultation.
The consultant was lovely and yes just diagnosed on the original bloods. He did a check over physical exam including weight and height plus more bloods. We now have the blood results and ttg went from 687 to 16! All in 6 months on gluten free diet so now in normal range and we are really pleased.

He has also moved from 25th to 50th centile for Height and weight but we'll never know if that is due to diet or just coincidence.

One thing the consultant said that I didn't expect was if his bloods are good we can discuss trialling non gluten free oats at the next appointment in 6 months. That could open up a lot of snacks out and about options plus standard oats are so much cheaper.

We have an online group dietitian appointment this week. I don't expect to get much from it but will give it a go.

I have found the glutenfreealchemist website which I find really good. Lots of advice for gluten free teens and travel. Lots of baking recipes. The flour blends are quite complicated but I'm planning a big flour order to give some of them a try.

Also just want to say thanks for the advice about school and meals I was given here. I tried again and copied in the senco to my email asking for an individual healthcare plan. It then turned out the school have a healthcare advisor. She was very helpful and took me and my son to the canteen. The canteen was not great in the end but there are options even though he is choosing the packed lunch route still.

Would absolutely recommend Becky Excell cookbooks and glutenfreecuppatea blog. Amazing stuff