Newly diagnosed coeliac - what do I need to know?

[PoorlyDS]

Google is a minefield. DS was on hospital (earlier thread ) with suspected appendicitis and bowel infection but got better and came home. Then bloods follow up showed coeliac. It was positive on a retest and although we are waiting on a genetic test to confirm , we are 99% sure it'll be the same diagnosis.
Aside from my feelings of guilt and upset for him and plundering the GF aisle , I'm feeling overwhelmed and so so sorry for him.
I need practical tips - I cook so meals will be fine I think but what have I not thought about? Sauces like mayonnaise? Ketchup? I use marigold bouillon which I think is ok and aim to perfect my GF cakes as I am a decent baker but practical stuff? New toaster? His own fridge shelf ? Maybe we all go GF?
My poor boy. I know it could be far worse but it is life changing so be kind please. Give me your tips/ resources/ Facebook groups ? Thank you 🙏

Quite a lot of their normal stuff is gf though and you don't pay 3x the price for it. It takes time initially to learn what you can have. You do need to supplement with a shop somewhere else usually too.

At 16 he may be fine but I found it hard to adjust to eating less because I was absorbing more of what I ate. My general rule with cakes etc is that things which are naturally a bit moist are great gf, things which are naturally hard - e.g. crackers are fine. Stuff in the middle such as bread, victoria sponge is rarely nice.

Best though to try to adapt menu to avoid gf substitutes, they are not as nice as the original usually and more expensive.

One I struggled with was brown sauce isnt gluten free.

Alot of coeliacs can't stomach GF oats so got to keep an eye on that too.

Join the FB group Becky excell everything gluten free. She has a few cook books but also a IG page that she shares free recipes on

Aldi's tempura chicken and fish goujons are GF. DSS loves them. Their skin on fries are his favourite GF frozen chips

Aldi and Lidl are terrible for gluten free.

Aldi dont stock any gf basics like bread,pasta,cereal, porridge,cake. I emailed them once to ask about their gf offerings and they sent me a list of what they stocked - it had things like tomatoes, apples and butter on it !
But Lidl “Pringles” are gf and are an acceptable version of the real thing.
Co op are surprisingly good considering they are small local shops. They always have a couple of shelves.

Learn to love rice noodles! DS was diagnosed with CD at age 4 - he's 18 now. I don't know if your son likes a drink yet, but if he does, he will need to stay away from beer (we don't even get the stuff that claims to be gf, as the rules around ppm aren't strict enough to prevent a reaction - he also avoids malt vinegar, which Coeliac UK says should be ok).

It's so much easier now than when DS was first diagnosed, though, which is good news. Read all the labels, stick to fresh, unprocessed ingredients where possible - and be OTT about cross-contamination risks when eating out, and you and he will be fine ♥️

I have a newly diagnosed coeliac teen dc, she is struggling with acceptance as she had no symptoms (diagnosed after blood test/investigations for something else). Some great advice on this thread, thank you all.

Can anyone recommend gluten free noodles and where to buy? Similar to koka noodles if possible

Feel free to DM me and we can confer x

Bugger. I forgot frozen chips ! Never mind. Just made a batch flapjack and told him I've changed nothing but the oats type and he's happy enough today with his lot. He's had a GF bagel I got at a cafe yesterday that had a deli section and said it was ok but very filling. I wonder if he's absorbed so little that's why he's been so so hungry ? Or is that just being a teen boy?!!

Schar frozen rolls are the best - oven cook them and they taste just like bakery bread

Eating out: Cosy club and Bella Italia are the best we've encountered

Two good American cookbooks I have are ‘prep once eat all week’ which has loads of gf and always gives gf subs. Also bizarrely a Gwyneth Paltrow book ‘it’s all good’ which has very little gluten as she eats mostly gf. It has great pancakes etc.

also ‘oh she glows’ cookbooks though a bit oat heavy

a lot of the paleo communities are gluten free - helpful to give inspiration without turning to a lot of gf substitutes which can be very highly processed (to make them act like wheat).

lidl sometimes sells the cornmeal you can use to make pure corn tortillas for tacos etc.

thai food and Indian food have a lot of gf options, it breaks my heart but Chinese usually doesn’t because of the soy sauce. You can get gf soy (tamari) in a lot of places.

after a few years your tastes really change and you stop remembering what gluten-y bread etc tastes like. The most useful thing for him to do would be to learn to cook and get really into food, before he goes to uni or anything, so that he knows how to make good food. Eg a pack of precooked rice tipped in a pan with some frozen peas and sweetcorn added then two eggs scrambled through and tamari on top is def not as good as Chinese takeout fried rice, but can get close!

Ooh, we love Brazilian cheese bread, which is gf and made with tapioca flour, which is nicely boingy. You can add all kinds of things - bacon bits, chilli flakes, caremelised onions. Yum! www.bbcgoodfood.com/recipes/brazilian-cheese-bread-pao-de-queijo

The tortilla comment reminded me that we buy old el paso corn tortillas - in the normal mexican section at Asda / Sainsburys that are normal price 🙂 they are labelled gluten free on the front of the packaging .

Oh love corn tortillas actually. This sort of advice is so handy He can have a burrito now and they'll be good for lunch too i reckon

I emailed them once to ask about their gf offerings and they sent me a list of what they stocked - it had things like tomatoes, apples and butter on it !

Reminds me of looking up restaurants on tripadvisor that are listed as having gluten free options and getting there and finding the gluten free options consist of some of the drinks and a side salad!

Going to give that a go. Do watch out for salad toppings such as dried onions and bacon bits, they have wheat in.

I would say the first month is the worst, plan for shopping to take twice as long. Then you get better but there will be the odd slip then after a few months it seems just normal. I still get stressed eating out other than in a gf restaurant. Generally restaurants are quite careful but I don't trust others entirely not to cross contaminate.

There is some wheat still in our kitchen but I know where it is and what happens to it. For example I never have wheat flour in the house, too easy to cross contaminate. The others though do eat bread and pizzas (have different trays).

For baking as well as gf flour substitute I bake quite a lot with almond flour and polenta.

Not sure which country you live in but wheat has to be listed on labels in the U.K.

Most things can be fairly easily substituted these days eg gluten free soy sauce is available in asda, it's actually more traditional than the wheat based stuff! Gluten free beer is widely available, gif to get priorities right

things that are gluten free include potatoes and rice including most rice noodles (eg use with pasta sauces and a lot cheaper than the free from aisle brands). Separate toaster or use these nifty pouches (handy for travel, got some from Lakeland a while ago). Knorr stock cubes are fine, but need gf gravy. I have an intolerance rather than coeliac thankfully

Not sure which country you live in but wheat has to be listed on labels in the U.K.

It's not just wheat you have to look out for though, it's wheat, barley, rye (oats for some). I know that's what my mum found difficult, if we are going to visit I have constant questions about "can you eat..." - a label saying contains gluten would be easier. Especially when you then have things that are gluten free but contain wheat starch just to confuse her further.

DS3 was diagnosed at 13. He’s now in his 20’s. What I’ve learnt over the years are as follows;
Asda does best and cheapest gf food. I don’t normally shop there but do get a delivery once a month for gf food
watch out for balerly Mary extract. It’s used as a colouring and is added to lots of food that shouldn’t have gluten. Kellogg’s and walkers use it, own brand supermarket cereals/crisps often don’t.
As you like cooking from scratch try and make just use gluten free products and then the whole family can eat together. We always use gf lasagne sheets, use gf flour for cakes and Yorkshire puds, use gf soya sauce and Worcestershire sauce (cheaper in Asda) and always buy gluten free burgers and sausages. These are usually the quality ranges, not the cheap and cheerful.
DS3 says the warburton tiger bread is ‘amazing’. Bloody expensive @£3.50As other have said already, separate toaster, butter, jams, etc
Eating out isn’t usually a problem, but sometimes chips are cooked in the same fryer as breaded food, so check.
My son can now stomach some cross contamination. He really couldn’t at the start.
Good luck!

Good grief! Auto correct has gone mad with my last post!

Going to give that a go. Do watch out for salad toppings such as dried onions and bacon bits, they have wheat in.

A. They may have wheat in
B. It's not just wheat you need to look out for (and in fact, products may contain wheat but no gluten) - it's also rye, barley and non gf oats

Non branded cola is a prime suspect for barley, btw. Always check in pubs/restaurants x

And sadly beer as he gets older.

McDonald’s chips are ok. They will also do everything needed for a burger and serve it in a pancake box and are happy for you to take your own bread roll and make it up.

Please tell me you have found bacon bits without gluten, generally I find it is wheat in there which is the problem. Barley is another ingredient which sneaks in unexpected places.