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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:
Iateallthewotsits · 16/02/2023 20:12

Mumski45 · 16/02/2023 19:59

When you are used to being coeliac you can never say 'yum' about bread again. I'm afraid it is all relative. I was once served beans on toast in a cafe which was supposed to be on gluten free bread, realised once I took a bite it was far too 'nice' to be gluten free but the damage was done and confirmed exactly 2 hours later. 😓

It’s all grim!

And so expensive for tiny loaves that go mouldy quickly.

I just don’t bother with bread anymore.

I make my toddler lovely normal toast and I could weep sometimes, it looks so amazing 😂

My coeliac disease is entirely symptomless which is why I didn’t have a clue until I was 41. It was only diagnosed as I am a private patient and a gastroenterologist was doing some tests for something else and as my insurance was coughing up, he just did every blood test under the sun.

I don’t ignore it though as both my parents had colon cancer - my mum died of it in her 40s, so I take it seriously. My risk of colon cancer is high enough without taking anymore risks.

However - if I live to 80 then I am saying fuck it and I will take up eating gluten by the bucket load again and I shall live off nothing but white bread, greggs sausage rolls and big macs until the end of my days.

currantbee · 16/02/2023 20:14

Chutneys are usually OK but watch out for malt vinegar as it is made from barley.

And watch out for things that are described as cider vinegar flavoured but actually use malt. Also all sorts of processed food contains wheat/gluten which wouldn't if you made it at home, e.g. onion bhajis should be gluten free and made with gram flour but store bought ones use wheat, same with poppadoms and a lot of other Indian food.

currantbee · 16/02/2023 20:17

Eating at home is the easy part to be honest. The extensive research required before every meal out is the thing that gets me down the most.

Dobbyismyabsolutefav · 16/02/2023 20:18

For a treat check out www.simplycake.co.com I send these to my DD at uni and she's not even a coeliac!

Blahblahblah21 · 16/02/2023 20:22

notapizzaeater · 16/02/2023 19:44

This is an urban myth. Grated cheese is coated but it's potato starch,

My DHs stomach & reaction would disagree. He was told this by a number of retailers & caterers.

BreakingPointAgain · 16/02/2023 20:25

He has other health issues including fibromyalgia, anaemia and depression. I don’t mind planning and organising our food and it’s something which he struggles with.

You may find that coeliac disease is the underlying reason for all these symptoms, particularly anaemia.

BrutusMcDogface · 16/02/2023 20:25

JJ456 · 16/02/2023 19:42

Things to avoid are usually bolded so that will help inform you. Oats, barely, rye, spelt etc are all to be avoided. Look out for sneaky gluten like in sauces, spreads, dips, crisps and meat alternatives if you have those. Also this is personal choice but I never say I’m coeliac in a restaurant cos they’ll refuse to serve you. I just take the risk and order a gluten free dish 🫤 this has gone wrong for me before.

Where on earth has refused to serve you?! That’s terrible! I eat out quite a bit. Restaurants now take coeliac disease very seriously and I often have to order with a manager.

BrutusMcDogface · 16/02/2023 20:27

BreakingPointAgain · 16/02/2023 20:25

He has other health issues including fibromyalgia, anaemia and depression. I don’t mind planning and organising our food and it’s something which he struggles with.

You may find that coeliac disease is the underlying reason for all these symptoms, particularly anaemia.

Exactly what I was thinking! Gluten attacks the whole body, it seems.

All the best, op. You’re a lovely partner. Sorry if my comment was a bit harsh earlier. I wish my own partner would take my coeliac more seriously, and stop leaving crumbs everywhere etc!!

BrutusMcDogface · 16/02/2023 20:28

Anaemia was the first of my symptoms that was treated. It’s caused by the malabsorption of nutrients (iron) from the damaged small intestine walls.

Mumski45 · 16/02/2023 20:32

BrutusMcDogface · 16/02/2023 20:28

Anaemia was the first of my symptoms that was treated. It’s caused by the malabsorption of nutrients (iron) from the damaged small intestine walls.

Same for me. At the time I had no other symptoms and only became more sensitive to gluten after I stopped eating it. Now I know within 2 hours if I have made a mistake and there is no doubt whatsoever.

CMOTDibbler · 16/02/2023 20:34

@Mumski45 I agree on never saying yum to bread again. 25 years nearly for me and I still sadly sniff dh's real bread and contemplate bread which is elastic. I've found bread which is edible, but its a once a week as a bacon sandwich thing

I've met grated cheese which is gluten. Not recently, but it used to be fairly common. Also boiled sweets where the non sticking agent had gluten

DogInATent · 16/02/2023 20:35

Coeliac here..
If you're on social media, there are a few useful Facebook groups run by fellow coeliacs or for the wider gluten-free community. Amongst the best are:

  • Coeliacs in the UK
  • Becky Excel
And your husband may be interested in the Beers4Coeliacs group.

Start with those groups, they'll steer you towards some of the other good groups. There are also some very poor groups out there that contain a lot if misinformation.

You'll both used to reading ingredients lists to check for wheat, barley, oats, and rye.

You'll also start to come across some products labelled gluten-free that include these ingredients. It can be confusing, because there are exceptions to every rule. You'll get used to them - basic rule is to avoid the four gluten-containing cereals unless the product is also labelled gluten-free.

Cadbury's... unfortunately most slabs are not suitable for coeliacs (e.g. Dairy Milk, Fruit and Nut) but many of the bars and packs are (e.g. Whispa, Twirl). The Cadbury website has a great allergen selector tool to filter out the unsuitable products. Oh... and whilst Mars bars are not safe, Snickers bars are safe.

Crikeyalmighty · 16/02/2023 20:43

@StopInvolvingMe Yes that's the one I have. I do agree with@Mumski45 that I miss really 'nice' bread and baguettes etc , proper nice crusty bloomers etc you kind of get used to it.

I can however recommend the GF M&S chocolate brownie slices- getting ok cake is quite easy- ok bread or crumpets or croissants- not so easy!!

Crikeyalmighty · 16/02/2023 20:45

If I can mention that the chain Bills have a totally separate GF menu, it's not massive - but does save trawling through menus and you can have GF bread with all their breakfast stuff.

gawditswindy · 16/02/2023 20:46

I'm just going to jump on to recommend Becky Excel's books. Her recipes are not just specific gf bakery- type recipes - she does loads of nice meals and her fake always are great too.

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.

itsicyhere · 16/02/2023 20:56

You've had some good advice here - definitely check out the Becky Excell books and the v supportive Facebook group she runs.

One further point (as a fellow partner of a coeliac) - depending on how sensitive your DH is you may need to be careful about what you eat before you kiss him. I have had to go GF myself (so our kitchen is completely GF too) because my DP is so sensitive that if I had eaten any gluten then even several hours later after brushing my teeth if I kissed him he would be affected.

We find it much less stressful to have everything GF at home - it enables DP to relax as well and not worry about anything.

Some coeliacs are not as sensitive, it does seem to vary a lot.

In any event even if you are still having gluten in the house you should have new & separate GF chopping boards, sieves, non stick pans and not cook gluten and GF things in a fan oven at the same time, ensure that you clean down thoroughly before preparing any GF food and use cutlery/crockery etc fresh out of the dishwasher (as your cutlery tray for example is likely to have crumbs in it...). Definitely a separate toaster is needed for GF.

It seems like a really steep learning curve to start with but after a few months it became a normal way of life and you get to know what's ok/what's not and you read ingredients on everything as a matter of course 😂.

Good luck and hope your DH starts to feel better soon.

BrutusMcDogface · 16/02/2023 20:59

I’m very badly affected by the tiniest bit of gluten, unfortunately. My reactions have got worse over the years and I think that’s common, as your gut completely heals and then gluten causes a big attack. It’s hours of puking from both ends, to be crude! 😳😂

BrutusMcDogface · 16/02/2023 21:01

I have been told by the dietician that the dishwasher is sufficient to clean gluten off utensils and pans etc. The other day I hadn’t had time to put a saucepan through the dishwasher so I didn’t use it as I don’t trust my ability to hand wash it sufficiently! 😂

StopInvolvingMe · 16/02/2023 21:02

BrutusMcDogface · 16/02/2023 20:27

Exactly what I was thinking! Gluten attacks the whole body, it seems.

All the best, op. You’re a lovely partner. Sorry if my comment was a bit harsh earlier. I wish my own partner would take my coeliac more seriously, and stop leaving crumbs everywhere etc!!

That’s a good point about it being linked, I do hope going gluten free will help him, all these things have effected him so badly his mental health is deteriorating fast too. He’s so tired he needs to lie down for a couple of hours by 4pm, thankfully he works for himself at home.

He has previously been diagnosed with IBS but I’m thinking maybe that was a misdiagnosis. I do try and look after him, he’s getting on a bit now (almost 60) but he does plenty of things for me which I find stressful and he does tell me a lot how much he appreciates me, but we make a good team and fingers crossed we’ll get him through this ☺️

OP posts:
BrutusMcDogface · 16/02/2023 21:03

❤️❤️❤️

StopInvolvingMe · 16/02/2023 21:05

Aw I got quite excited about the GF breads, they looked so good in the packet, but I guess realistically they will taste a bit naff. I’m thinking of also trying those GF baguette type ones, not sure if they are suitable to put in the oven, but will probably taste a bit better if they are crusty? Maybe with lashings of butter and bacon or some homemade soup

OP posts:
volleyballing · 16/02/2023 21:07

DD got diagnosed when she was 5 and so has grown up with it. It was so hard at first but after the first couple of months it got much easier.

It can be hard socially and we have some relatives who are confident it is just a fad but hey ho. We are vegetarians too and she still has a big choice of foods.

Hopefully your husband will start to feel better soon. The transformation in my daughter a few months after diagnosis was incredible.

DogInATent · 16/02/2023 21:08

In any event even if you are still having gluten in the house you should have new & separate GF chopping boards, sieves, non stick pans and not cook gluten and GF things in a fan oven at the same time, ensure that you clean down thoroughly before preparing any GF food and use cutlery/crockery etc fresh out of the dishwasher (as your cutlery tray for example is likely to have crumbs in it...). Definitely a separate toaster is needed for GF.

That is pretty extreme. Most coeliacs aren't so sensitive as to require this degree of duplication.

Most mixed households will have separate gluten-free and muggle toasters, and possibly chopping boards (definitely through out any cracked chopping boards), but will share cutlery, crockery, and pans without any problems. Gluten isn't indestructible. Hand washing (rinsing carefully) or using the dishwasher is adequate,

sunnydayhereandnow · 16/02/2023 21:13

StopInvolvingMe · 16/02/2023 18:49

Thanks everyone- great advice

his favourite dessert is apple crumble does anyone happen to know any free from crumble mixes? Can’t seem to find any

A coeliac family member came over at short notice when I had planned apple crumble, and I made a topping by grinding walnuts in the blender and adding brown sugar and a bit of butter. Yes, I know you can get GF flour, just wanted to share this alternative as it was so delicious :)