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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Any coeliacs here?

165 replies

StopInvolvingMe · 16/02/2023 18:32

Sorry posting for traffic

my DH has just been diagnosed so I’m on a mission to get all our groceries gluten free. Some products are clearly labelled as gluten free but I’m getting all confused with products which are not obvious, things like brown sauce, chutney or jam for example. Do I need to avoid anything containing ‘wheat’ on the ingredients list?

if anyone can offer any advice on products which are not obviously gluten free or any pearls of wisdom/ advice I’d really appreciate it as Google is now overwhelming me and I thought it may be best to ask real people!

thank you very much!

OP posts:
handsoffate · 16/02/2023 21:14

Also I was still reacting to a lot of g/f foods, before working out by trial and error that I’m also lactose intolerant to some degree. I hadn’t realised earlier as I hate milk so don’t drink it, but the milk powder in some g/f breads etc was causing problems. I can still eat butter and cheese though.

bowieontheradio · 16/02/2023 21:14

Coeliac here. It does get easier, but I recommend checking every label even with stuff you have previously thought has been safe - I've found out a few times that recipes have changed.

GF bread is generally grim - dry and mealy.

Stock cubes - always use Knorr. Colmans mustard is also something that caught my poor DB unawares when he made a recipe with it and gave it to me.

DP and I just cook everything gluten free now and it's really easy. Where I find it difficult is if we're travelling somewhere and I just want a quick bite to eat, so we always take our own now.

BankOfDave · 16/02/2023 21:14

Lots of good advice already. It’s things like brown sauce, soya sauce, teriyaki sauce, lager and beer etc. that you need to look out for.

In our house we have Warburtons tiger or sourdough loaf (£3.70 for 500g though) but always has to be toasted even for sandwiches to be edible. Warbies sandwich thins (cheaper) also reasonable or the Schor part baked rolls. Can’t eat any other type of GF bread. I quite like GF pasta now, Asda has a good variety. Tesco has a good free from range including tortilla’s and naan breads which are nice. Both do GF Easter eggs and Xmas things as well as Sainsbo’s and M&S. I mix and match between lots of supermarkets as find they all have different free from ranges that are good for certain things and then stock up.

Zoomie1 · 16/02/2023 21:15

Coeliac here, be careful with Gluten free oats. They contain a protein that is similar to gluten. Many Coeliacs can tolerate GF oats. I can't as I am super sensitive and they make me ill.

StopInvolvingMe · 16/02/2023 21:18

NeverDropYourMooncup · 16/02/2023 20:54

You do pretty much need to not buy cook-chill products anymore, with just the occasional exception (such as one type of Co-op fishcake being labelled GF).

Oven chips are my bete-noire. They simply do not require the addition of wheatflour, but they almost always do; occasionally the very cheapest ones are OK and Aunt Bessie's are, but McCains are very heavily promoting/aggressively marketing so that the most likely bags in the small supermarkets are always going to be their frankly, poisonous, offerings instead.

Birdseye Potato Waffles are OK. Their GF nuggets and chicken/fish things are rank, dry things that scrape the lining off your mouth, though.

Instead of soy sauce, you are looking for Tamari. Can't have shop bought sushi though, even if you don't use the soy fish, as it's likely to have been cross contaminated (as I found out to my cost). And those marinaded fish/chicken/pork things are almost all out of the question now, as they'll have soy sauce including wheat in them.

Mustard - French's is OK, Colman's isn't unless you buy the square tin of powder and mix it up as you go along.

If it's made by Walker's, it can't be eaten. Some Tyrrell's are OK, but not all of them.

Little Moons are great and GF if he likes ice cream/mochi. Whilst the posher ice creams are more likely to have something he can eat, almost none of the dairy free ones are safe.

GF pasta is actually really nice. Cook it in lots of water - Garofaolo is the commonest brand and is fine, De Cecco is nicer.

Noodles are generally off limits. Pure buckwheat, despite the name, Soba noodles are OK - Clearspring do them, but most have wheat added - no egg, udon or unspecified noodles. Rice noodles are possible and just need soaking in hot water for a brief period before adding to a stir fry. Most stir fry sauces, some gochugang and miso are dubious - check them very carefully.

You can get a hell of a lot of flavour from other sources rather than jars - chilli and garlic infused olive oil, adding olives to stews for a rich flavour, for example. Worcestershire sauce is out unless specifically marked GF.

Watch out for even dry rice and pulses - some of those are labelled because they can be contaminated during packaging/processing.

He might also have issues with lactose because of celiac damage to the part of the gut that produces the enzyme to digest it. Lactofree milk, Lactaid tablets for the essential ice cream, but he may be OK with hard cheeses or goat/sheep milk ones. This can recover to some extent.

Basically, you will need to read every label. Every time. Separate butter/peanut butter/jam if you continue to eat standard gluten foods, separate spoons, thoroughly scrubbing every pan between uses, separate chopping boards. And don't be surprised if at some point he develops an almost childlike obsession with something if you find a GF version - after months or years without something, to find it again can get you ridiculously excited.

I still get caught sometimes, but that's generally from an undeclared cross contamination.

Good point about flavoured / infused oils, I understand generally oils are GF so I’ll buy some interesting ones. He’s been told his walkers and wotsits are off limits but Seabrook are GF and I think the kettle chips brand are ok too. The sea salt and cider vinegar flavour is very nice. I think Tyrell’s do a chilli flavour which he’ll like too.

we eat homemade chips a couple of times a week which I make in the Actifry which is just potatoes and oil so they’ll be ok, hadn’t thought of Birdseye potato waffles, that’s handy to know.

I’ll also get some French mustard to make mustard mash. I read that the sharwoods sauces are GF but I’ll check as I use those for stir fry and curry, I also use Dolmio intense chilli for bolognese which I believe is also GF (according to Google)

OP posts:
losingthemind · 16/02/2023 21:35

I make a crumble topping with muesli and oats, and nuts. I think it is a Mary Berry recipe - just get GF muesli. It’s divine!

Other tips - separate butter in fridge for the Coeliac, separate toaster. I have silicone coated wooden spoon-style spoons as the wood can absorb gluten and is a contamination risk.

With some intense training (it has taken 4 years!) everyone in the household knows how not to contaminate items in the fridge/cupboards, so I can use them with (reasonable) confidence that they wont make me sick.

the Coeliac UK app is a must - for scanning normal food items in the supermarket to tell you whether they are safe.

It is scary at first, and takes time to adjust. We est mostly naturally GF as a family, but the others still have plenty of gluten.

Girlattheback · 16/02/2023 21:36

I always use the doves farm (now Freee foods) recipe for Victoria sponge. I disagree that you can use your normal recipe and just swap in gf flour, it’s high in cornflour and doesn’t behave the same. Victoria sponge recipe

If you’re using a mixer then you have to be careful about cross contamination from any previous non gf bakes you’ve made. I bought a £5 supermarket hand mixer when my DD was diagnosed …. Have since had massive upgrade 😉

I’d agree, join coeliac uk, the food checker is brilliant, gluten is in so many foods that you just wouldn’t expect. Be strict with the diet so he can recover. Ignore the posters saying they ignore cross contamination labelling on foods, it’s not worth it.

dnac · 16/02/2023 21:37

After 25 years of being coeliac and on a gluten free diet, I have to say I’ve pretty much had it with GF food. I still crave normal bread and cakes after all these years. GF versions are ok, but only ok and don’t really come close. Homemade GF cakes and pastries are hit and miss. Having to be careful all the time when eating out is tedious and even GF menus and ranges tend to be quite boring (I can’t bear another GF chocolate brownie). GF spaghetti is top of the list of annoyances as it generally takes the form of a tube shaped clump of pasta in the cooking, no matter how much I stir it.

what annoys me (and why I gave up on the coeliac society) is that there seems no particular effort to find a cure. Lots of gluten free products promoted but it seemed like there was a vested interest in not finding a cure so that we all keep buying the slightly more expensive GF alternatives.

I’m with the earlier poster. At some point if I make it to a decent old age, I’m going to chuck in the GF diet and have fresh, crusty white French bread to my heart’s content.

Pythonesque · 16/02/2023 21:38

I do hope he finds the depression lifts from going gluten-free; for me that's always been the biggest symptom persuading me to stick to the diet. (though, I haven't run a gluten-free family kitchen, I was just talking with a friend the other day about maybe one day changing and having strict quarantine arrangements for utensils ...)

My mother didn't go gluten free till I was diagnosed in my teens (whole family in the end); I commented to her only the other day that it had (finally) occurred to me that her massive problems with anaemia when younger, especially during pregnancies, were probably coeliac related.

Crumble is one of the best things as the tendency of gluten-free flours to be more crumbly is exactly what you want :)

A tip with pancake day coming up - Asian stores often stock "glutinous rice flour". I don't know how it is made, but it's definitely gluten-free and the ingredients are rice and water. Essentially it is a finer flour than rice flour, presumably treated so that some water has already been absorbed by the grains. Anyway, it makes lovely pancakes and I often use it half and half with a standard GF mix (or with normal rice flour, depending on what I've got). Buckwheat pancakes are also yummy!

shoes4life · 16/02/2023 21:47

I've been diagnosed for 20 years, and things are much better now.
I can recommend Pieminster gf pies - the only proper gf pastry item that really you cannot tell the difference (according to my non coeliac dh).
I have to admit I don't have separate toaster etc. I'm careful but I cannot be ruled by every crumb. I also do eat 'may contain' as half the time it seems to be the company covering their own backs, but I appreciate I am making that decision for myself. I really like the Genius seeded loaf, but I keep it in the freezer and toast it by slice. The Warburton tiger loaf is lovely, but I only have it as a treat as I would eat the whole thing.
Nigella's clementine cake is brilliant as is just ground almonds rather than gf flour.
While I am willing to stick to a gf diet for my own health I would really like to see the actual stats of how much of a greater risk of getting cancer there is by occasionally eating a random crumb as no one has ever given those figures - I don't think it's actually been researched, so most advice is 'worst case scenario'

shoes4life · 16/02/2023 21:49

Also the very best pancakes (according to me and my kids!) are easy - just one banana and 2 eggs. Mix them together and make little fluffy pancakes, not crepes. I add some coconut and blueberries and they are delicious.

weasle · 16/02/2023 21:57

I don't have a separate toaster I use toaster bags. But then rarely eat bread as GF bread isn't great.
Occasionally on holiday I'll take the schar brown ciabatta rolls and the toaster bags and have those. Otherwise all GF bakery stuff eg cakes, crumpets, highly processed and horrible.

I tend not to substitute with GF things, except pasta. I have red lentil pasta and it's much nicer and more protein than wheat pasta. Rice pasta also fine. Both more expensive though! Other than that I have naturally GF foods eg veg, rice, eggs. I'm lifelong veggie too so no idea about meat.

I'm ok with GF oats although some people aren't. I eat porridge for breakfast with extra seeds and fruit. Delicious.

Treats I like Nains choc biscuits or GF hobnobs or usually bake. It's trial and error some things I swap GF flour and it's fine, some are disaster. Crumble one of the easiest just use Doves farm GF flour. Agree ground almond cakes really good. Pavlova, flapjacks, cheesecake with GF biscuits all good.

Eating out can be hard. Pizza express do good GF pizza and GF peroni. Tapas and Mexican good.

I'm fine with may contain and do eat vinegar in small amounts.

I do relate to PP about occasionally really missing bread products. Buttering a piece of Fresh bread or a fresh croissant for a child is sometimes very hard!

Of note 10% of people with IBS actually have coeliac instead from memory so that might improve.

Happy shopping!

HippyChickMama · 16/02/2023 22:02

Beer is also out, not sure if you know that or if your dh drinks alcohol. There are some decent gf beers though and cider and wine are generally okay

TheToothofaPig · 16/02/2023 22:10

Hopefully your DH won't fall into this category but be prepared for the possibility that being diagnosed and going gluten free won't necessarily solve all his digestive/gut issues. My DH has been diagonsed for over 12 years (now late 40s) and although he is much improved from how he was, I think the damage that must have occurred to his gut over many undiagnosed years and the psychological issues he developed around food (because it made him feel so rubbish) means that he still suffers with all sorts of symptoms that can best be described in IBS terms (bloating, stomach pain, constipation,toileting issues). All this despite a strict GF diet. He has good weeks and bad weeks. It's really hard for him to get to the bottom of it all (has tried Fodmap and all kinds of elimination diets). Has had endless investigations and tests to rule everything out. At the end of the day I just think that his gut is a bit fucked and he has to live with the consequences of that. It does make him depressed. It's not easy. Hopefully this isn't the case for your DH. Sounds like lots of coeliacs on this thread are doing well so fingers crossed for you.

Crikeyalmighty · 16/02/2023 22:14

I swear by carrying around a pack of Nairn's GF cheese oatcakes for if I'm ever stuck and a couple of those eat natural yoghurt coated fruit and nut bars

currantbee · 16/02/2023 22:24

Whilst all these coeliacs are about, has anyone seen the frozen daim cake in the shops recently?

Namechange456782 · 16/02/2023 22:29

I just check everything I eat obviously. You’re looking for wheat, barley basically but I probably still couldn’t tell you what grains I can/can’t eat off the top of my head. I Google religiously.

I eat things that say “may contain” and never had an issue.

As long as you check the ingredients it’s not hard, it’s the cross contamination which is an issue. In terms of eating out it’s best to talk to the staff so they can (or can’t) reassure you about procedures.

Namechange456782 · 16/02/2023 22:34

Food suggestions-
Waitrose do a good “sourdough” loaf (tastes fuck all like sourdough but it’s nice toasted)
Jubel beer is good, they do a lovely elderflower one!
Pieminister pies as others said 🤤
The Warburtons sandwich thins are decent.

I live in a very… I guess “modern” city which caters a lot to gf and vegan diets. The Lounge chains are good for gf food and can be found in lots of places - they’re clued up on allergens and their gf menu is huge!

Separate toasters is important I think or just getting a big one and keeping certain sections for the gf bread. Separate chopping boards, knives etc, not letting gf cake touch cake with gluten etc… it’s a pain.

Ultimately for me the biggest thing is NEVER finding lunch on the go. It infuriates me still. There’s no excuse for supermarkets having nothing - sushi is ok unless you have the soy sauce but Tesco have gf soy sauce in their sushi packs.

It’s not even the restriction that’s the hardest part, it’s the anxiety around eating out at new places, the having to be vigilant, you can never just say “fuck it it’ll be fine”.

VestaTilley · 16/02/2023 22:56

Coeliac here!

Don’t despair - you’ll both get the hang of it really quickly. It’s vital your DH doesn’t eat gluten anymore - it really is bad for him and he can’t eat even a little bit.

My DH was very supportive when I was diagnosed: he cleaned out all our kitchen cupboards, bought us a new toaster and joined me in eating GF bread and alternatives at home.

Your DH must avoid anything containing gluten (wheat, rye or barley). If it’s an allergen it should be in bold on a label. He doesn’t only have to eat from the GF aisle, but he must make sure labels don’t say “may contain wheat” etc or eat anything containing these things, eg oxo cubes, soy sauce, bisto, bovril, Branston pickle, malt vinegar etc.

There are loads of alternatives now- gluten free beer, gf flour, gf snacks like gf pork pies (M&S does a great range). Morrisons, Tesco, Asda and Sainsburys good too.

Watch out for takeaways and restaurants - always tell them he’s GF (coeliac) and avoid Chinese food.

Holidays - Italy is surprisingly great as they test all kids for coeliac!

Join Coeliac UK and Coeliac’s in the UK on Facebook.

weasle · 16/02/2023 23:14

Crikeyalmighty · 16/02/2023 22:14

I swear by carrying around a pack of Nairn's GF cheese oatcakes for if I'm ever stuck and a couple of those eat natural yoghurt coated fruit and nut bars

Yes I always have snack bars in my bag! One food where there does seem to be plenty of GF choice. I like nakd, nature valley protein and those yoghurt eat ones too.
I've recently discovered those cheese oat cakes and they are great!

notapizzaeater · 16/02/2023 23:18

bowieontheradio · 16/02/2023 21:14

Coeliac here. It does get easier, but I recommend checking every label even with stuff you have previously thought has been safe - I've found out a few times that recipes have changed.

GF bread is generally grim - dry and mealy.

Stock cubes - always use Knorr. Colmans mustard is also something that caught my poor DB unawares when he made a recipe with it and gave it to me.

DP and I just cook everything gluten free now and it's really easy. Where I find it difficult is if we're travelling somewhere and I just want a quick bite to eat, so we always take our own now.

Ready made colmans mustard has gluten in but the powder form doesn't

notapizzaeater · 16/02/2023 23:24

We had two totally seperate areas of the kitchen - different butters, so DH was always lurpak and the coeliacs was always anchor so we knew which was which. At home we ate GF all the time, I refused to cook separate meals. I buy gravy in big tubs off amazon, saves me a fortune.

I 'love the cheap' frozen sausages from Tesco - most 'posh' sausages are GF - I just don't like them

Tesco's fresh stir fry sauces are mostly GF - we have stir fry every week with these and add rice noodles.

What sort of foods do you normally eat ?

It's a bit like scouts, you need to be prepared, getting something on the go can be difficult.

My go to now is a subway or a Big Mac without the bun

Artisticpaint · 16/02/2023 23:30

I avoid oats even if they are gluten free.

jamimmi · 17/02/2023 00:02

Booths if your in the North have the best gluten free bread for a treat. Watch out for soy sauce and Worcester sauce too. DD is gluten free, blood test inconclusive but she was.so.unwell peads thought she.may not be eating enough to trigger it but there is a strong family autoimmune history and now.shes gluten free she is so much better. Avoid Cadbury mini eggs packets of eggs not gluten free but bar is. I think it's wrong as after eating she was symptomatic. Becky Excell is fab and alot of resturants now nave gluten free but check for cross contamination.

Ilovefluffysheep · 17/02/2023 01:16

jamimmi · 17/02/2023 00:02

Booths if your in the North have the best gluten free bread for a treat. Watch out for soy sauce and Worcester sauce too. DD is gluten free, blood test inconclusive but she was.so.unwell peads thought she.may not be eating enough to trigger it but there is a strong family autoimmune history and now.shes gluten free she is so much better. Avoid Cadbury mini eggs packets of eggs not gluten free but bar is. I think it's wrong as after eating she was symptomatic. Becky Excell is fab and alot of resturants now nave gluten free but check for cross contamination.

You've got that the wrong way round I think. Packets of mini eggs ARE safe, the bars with mini eggs in aren't (they were last year but now have a may contain warning on).

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