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 🙏

My DD was diagnosed with coeliac last year. The GP picked it up in a blood test for something else. The GP told us not to cut out gluten until advised by the consultant as it could affect the results if further tests are required. The consultant phoned quite quickly to arrange further blood tests, again saying to keep gluten in diet until the results were back. Not long after that he called again to confirm to start going gluten free from that point.

As a family I only have gluten free pasta in the house, to avoid mix ups at dinner time. My daughter has a separate bread bin, toaster, butter, jam etc to avoid cross contamination.

I've not been able to perfect gluten free pastry - it always comes out really sandy. Cakes work well with a tiny amount of xantham gum, otherwise they crumble and fall apart.

I buy my daughter a lot of vitamin supplements- I think she was prescribed iron and vit d initially, but have kept those going to help keep her levels up.

I try and make as much as possible from fresh. Probably as a family it has made us all eat a little bit more healthily - although massively pushed up the food bill even more

One of my sons is coeliac as am I, he's nearly 16, diagnosed at 6, everything I cook is GF, it was difficult for him initially because he didn't want to be different, at that age you might also need to talk to him about which alcohol has gluten in

Came on to recommend Becky Excell cookbooks and it's worth following her on social media too. One of her books is a planner which is aimed at people just starting out eating gf which you may find useful.

Yes to new toaster for him, his own butter, jam, etc. I buy gf labels off Amazon which I put on DD’s jars.

lots of stuff is naturally gf so you don’t have to raid the gf sections. Only stuff I get from there I think is bread and pasta and sometimes cakes. Oh and flour

some of the marigold bouillon powder is ok and some isn’t. Ketchup and mayo I think is fine. Soy sauce tends not to be so you need specific gf stuff. Lots of sauces aren’t ok.

There’s odd stuff as well like dairy milk chocolate is not ok but Twirl bars are.

the best pizza flour is gf Caputo from Amazon, making your own pizza is much better than anything shop bought.

I have a wheat allergy rather than coeliac, but follow the same diet.

I have separate toasters, bread boards and bread knives at each end of a long worktop.

I use storage trays in the fridge to keep things separate and labels for anything that might get mixed up.

All dinners are GF here, it is so much easier than juggling stuff and risking cross contact.

I've found eating out for a meal is mostly ok with some research, and some places are great, but grabbing a quick lunch or snack can be a PITA so it's worth being prepared for that.

Becky Excell is a goddess of GF. Buy her books, join her FB group and you'll be fine.

I tend to use metal utensils as can wash well and not worry about cross contamination. As others have said separate chopping boards, wooden spoons etc - anything that is permeable.

We cook from scratch to avoid issues and it's cheaper than buying gf convenient food. Be wary of eating out - there is a big difference between coeliac friendly and places that serve 'non gluten containing ingredients' be careful of cross contamination.

Coeliac uk is fab and lists gf places to eat.

Many foods are naturally gf so doublecheck as shops stick a free from label on and an extra few ££

Be mindful of things like shop bought grated cheese - the coating to keep it from sticking together has gluten in!

A pp suggested oxo cubes with knorr. Knorr are gf I didn't think oxo were but in fairness its been a while since I checked!

Once you get to grips it's not bad although some of the bread you can break a window with so it's a bit of trial and error to which he prefers.

My dd was finally diagnosed on Fri. She waited from nov to March for her endoscopy -although we were in the cancellation list - and then another five weeks for results - constant vomiting and diarrhoea for all those months. My advice - if you are told that your son must wait for an endoscopy is ask for anti emetic to be prescribed to get him through (even with, my dd missed 41 sessions of school this year due to sickness). It’s terrible that they make people wait so long for diagnosis - it’s one of the reasons so many people go undiagnosed.

Secondly when your son is fully diagnosed, get the rest of your family tested.

good luck to you all x

I'm so sorry. This must have been so hard. My son went in after vomiting every day for a week and tummy pain but I don't think he's had the runs too. He says not but is quite shy too. He caught noro in there after that and has been exhausted for weeks. He's just said he feels unwell now too. My nerves are in shreds. I think we are all going to go GF here for ease. I cook for everyone from scratch anyway so no issues there.

DD is coeliac. There’s probably more food around than you realise.
Morrisons has the best GF section and M&S is good as well.
Lots of places do GF menus - wagamamas, Bella italia, Nando’s. There’s often chip shops that have GF nights. Join your local GF Facebook page and coeliac U.K. (a child membership is £15). Work out which crisps he can have is a good place to start (seabrooks are good) and what is naturally GF and not in the free from section.

we have a separate toaster and stickers on things.

by far the hardest thing to deal with is other people who think they know what GF is and try and tell you, without knowing anything. My SIL is ‘gluten free’ and eats loads of things with gluten in them.

and you can get sample boxes from all the big GF companies, get those and try everything! Try different pastas - DD likes Sainsburys penne.

DD was entirely diagnosed by blood tests. Consultant was happy as that is the protocol in Italy and that’s what she follows.

Hi,

I am coeliac, diagnosed aged 16 but had been suffering for many years. I really don't miss anything from before since I was just vomiting all the time! When I was sixteen there was bugger all worth eating in the specifically gf aisles; now it's all pretty okay. I eat rice pasta and my partner is generally happy to eat that too. Second what others have said about Italy and Ireland being havens for us! Germany was a nightmare.

It may take some trial and error. Personally, I can't handle oats of any kind, but if something says "produced in the same factory as products containing gluten" it makes no difference to me. We have a four-slot toaster and two of the slots are mine. As an adult I've often been quite happy about being coeliac as it means I don't feel tempted by all the biscuits and cakes people bring to work -- I'd rather not!

Sixteen may seem old enough to spend your lifetime in mourning for things you used to like, but I promise, he'll get over it. Occasionally I think about Twixes. That's pretty much it. Restaurants label what's gf now but even when they don't, as time goes on and you get more confident with your own limits, you can have a guess.

Oh, and also: burgers and sausages. Aldi and M&S now seem to have gone towards having all their burgers and sausages be gf, you don't have to look in the speciality section.

I'm off to Aldi shortly so will have a look. Thank you!

First thing to say is it will be ok. As a coeliac diagnosed in childhood, I can't remember what I'm missing out on! So when people say for example 'oh but doughnuts...' I don't have any memory of doughnuts, so don't care!

I've been diagnosed for 20 years and it's still shit. It's totally ruined holidays and eating out for me. I'd love to go into a coffee shop and grab a coffee and a pastry without having to do a ton of research first. Or trust someone else to cook me a meal.

Warburtons square rolls are by far the best bread item for sandwiches imo, pretty much most other stuff needs to be toasted to be edible. I rarely eat gf pasta as it's never great imo. Don't get too attached to any gluten free products, they often disappear never to be seen again. Most of the free from freezer section at our local Tesco is now vegan.

Catering at home is fairly straightforward once you've got into the swing of it.

My housemate is coeliac and in addition to all the great advice you've had, I'd say the things she gets served most often in 'GF' restaurants is malt vinegar, so watch out for that; it sneaks into all sorts of sauces and dressings and most don't realise it has gluten.

My two biggest tips:
Watch out for pre-grated cheese. It caught me out a lot to begin with.
GF pasta can be really good, but it ALWAYS takes longer to cook than you expect.

I'm sorry to read this. I'm going to do my best to make it less shit and that's al I can do, I guess. I'd happily cook for you and am thanking my lucky stars that I do cook and bake

I try to make meals that don't need GF substitutions - tacos, rice and chili, salad with some kind of protein, soups that don't use wheat flour as a thickener or stock containing wheat. Often the substitutes are rubbish and for the most part, GF bread just tastes like wood. A lot of the free from treats are good though (if a bit expensive) like the pretzels and cookies. Sainsbury's also has a good frozen free from section - the chicken Kievs, chicken dippers and veggie burgers are my favorites. Also gluten free noodles taste exactly the same to me.

3 in our family coeliac. We split the kitchen in half. But mostly we eat naturally gluten free foods as it is easier than gf alternatives. So curries, stir fries, rice and potato based dishes. Roasts are fine! Eating out is a bit more challenging - but coeliac UK has an app where you can find approved venues which helps. We get bread and flour on prescription - the juvela white mix is great for baking, though we mix it half and half with supermarket flour as the xantham gun makes a weird texture sometimes! Aldi do tempura battered chicken / fish which is gluten free.
Aldi crisps are also mostly gluten free, unlike walkers! Chocolate is more difficult - lots of 'may contain' warnings, although galaxy is fine and some of the Aldi ones. Lindt is not except for the white chocolate based ones😁. Also beware the additives in milkshakes and ice creams in places that do choc bar based ones!

In our house we have 2 with CD, 2 without. All main meals are gluten free. We have zoned the kitchen so all gluten food prep is done away from the main food prep area. Separate butter and a no double dipping rule for everything else.
It will take time to get used to, but it will be alright.

Sorry - Aldi are probably the worst for GF. They don't have their own GF range, and you have to read the labels in everything.

We cook g/f for everyone in the house for main meals (pasta, noodles, breadcrumb coatings, pastry etc all g/f). One cupboard is for gluten-containing bread, biscuits, cereal, etc, the rest of the kitchen is all g/f. Separate toasters, spreads, etc.
It’s easy when you get jnto it.

Also if you eat at a cafe or restaurant and order a g/f meal, double check with the server when it arrives. We’ve had numerous occasions when something not g/f has been added to the plate (bread roll, ice cream wafers, gravy, etc).

I would say as a home cook you have a head start, it just takes a bit of tweaking and replacing of items in your store cupboard. There are a lot more options these days than a few years ago so in that regard things are a lot easier. What is frustrating is having to explain to friends or people in restaurants that this is not a diet fad or a wheat intolerance it is an autoimmune disease. It is a good opportunity to educate your DS about his diet and cooking for himself.

I sure will be ramping up his cooking skills.