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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Coeliacs (and Others) Assemble!

183 replies

NeverDropYourMooncup · 26/07/2023 19:34

Inspired by another thread where somebody wants their dietary needs/wishes catered for (and for some posters, to permanently restrict the diet of other people whether they like it or not), I thought maybe those of us who have absolutely bugger all choice about the matter for medical reasons might want to vent, suggest decent foods that aren't just made of sadness and disappointment - or simply plan to take over the world?

I'm pissed off. Been feeling rough recently whilst waiting for my biologics delivery, skin crawling, horrible pain - and found that my happy discovery of Tesco's Free From Snacks, including Cheese Flavour Balls and Bacon Rashers - specifically labelled Gluten Free - contain, guess what? That's right. Fucking Gluten.

https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/food-and-drink-information/food-alerts/tesco-recalls-free-from-snacks-because-of-undeclared-gluten/

you can get a refund if you haven't actually eaten the bastard things yet. Anything if you have eaten them? Of course not.

This follows close on from Eat Real Gluten Free Lentil chips where the manufacturer gave the wrong batch numbers as being contaminated first time round. And of course, they are sold under different names for some supermarkets.

And the Gosh falafels (vegan, by the way) and pakoras the month before.

And Suma lentil soup, and Alpro Rice Milk, and all the other things you're supposed to be grateful for paying an ridiculously high price for in exchange for something vaguely resembling food....

It would be far easier if gluten/avenin/etc were just banned for everybody, wouldn't it?

There are only so many jacket potatoes and homemade chips (because you can't trust oven chips, 95% of which are dusted in wheat to make them crunchier and browner) one person can consume before they get a tensy bit bored...

Who's with me? What shall we call ourselves?

How about the Coeliac and Allergy Liberation Front?

Tesco recalls Free From Snacks because of undeclared gluten

Tesco recalls Free From Snacks because of undeclared gluten

https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/food-and-drink-information/food-alerts/tesco-recalls-free-from-snacks-because-of-undeclared-gluten

OP posts:
Crikeyalmighty · 30/07/2023 16:13

@off I developed a lot of neuro issues post covid and the first thing the GP said was to try GF and lactose free for 6 months . Apparently the sheer volume of GF that many people consume on a regular basis means gluten intolerance (not necessarily coeliac) has been very much on the up in over 55s- as has gluten ataxia and she also mentioned a lot of over 50s don't tolerate cows milk that well either and given all these cappuccinos and lattes they've seen an upturn in that intolerance too. Not sure if these are the reasons but the GP seemed to think it hadn't helped. To be honest I didn't have an issue as I needed to lose weight too (4 stone) and going GF has made me more mindful of varying up what I ate before as now can't automatically grab a toastie or a sausage roll etc.

off · 30/07/2023 16:29

Crikey not sure how that relates to what I said? I was talking about the fad dieters who jumped on GF as a trend, resulting in the GF market ballooning, many of whom have now jumped onto something else instead. Compared to them, people avoiding gluten for medical reasons are tiny numbers. In 2018, surveys were saying that at least 10% of people in the UK were "trying to avoid" gluten. I very, very strongly doubt that a lot of those people were those who had had informed, reliable medical advice to exclude gluten, especially since gluten-related health issues are still an area with a lot of uncertainty involved, outside of known gluten-related pathologies with (usually) identifiable biomarkers, like coeliac disease and DH.

Lactose intolerance is a separate thing (though more common in untreated coeliacs due to the gut damage) — it's normal, and it's lactase persistence that's the weird difference.

Crikeyalmighty · 30/07/2023 16:41

@off. I honestly hadn't realised that it was such a big fad to be honest until I read your post. It bypassed me. I think I presumed most people like me had medical advice- you live and learn- I can't understand why anyone would do it as a fad- I was staring longingly in waitrose at cheese muffins earlier!!!

off · 30/07/2023 17:01

It was this whole thing — the Wheat Belly book, celebrities talking about how they've never felt better since their chakra therapist told them to cut out gluten, a general aura of healthiness around the words "gluten free", things like fancy premium granola aimed at the health-conscious and over-monied listing "gluten free" on the front alongside things like high fibre, keto, paleo, high fibre, organic, natural, fairtrade, preservative-free, no added sugar, no artificial sweeteners and so on, Novak Djokovic claiming he knew he was gluten-intolerant because his arms got weaker when someone pressed a slice of bread on his belly… Hmm

Crikeyalmighty · 30/07/2023 17:24

@off blimey- although I think my H is slightly guilty of this as even before my issues he would only eat GF spaghetti as says all other pasta makes him feel like he's swallowed a pillow.

off · 30/07/2023 17:41

If he feels like non-wheat pasta agrees with him better that's fair enough. It's probably the fructans rather than the gluten, though.

WollyParton · 30/07/2023 18:58

Me and OH call the Free From selection “food free food”. That’s how it feels sometimes!

Unexpecteddrivinginstructor · 30/07/2023 21:24

My blood test for coeliac was negative but I cannot tolerate much at all. I can even taste it sometimes so I think it is a fairly bad intolerance, and the effects last for days, although it has been years since I have been properly glutened. The doctor said to completely avoid it.

The things I find frustrating are when there is just one item in a long list of things, for example Barley as #15 in a list or a dash of normal soy sauce in something. I totally accept that say a normal pizza has gluten in it, but it is annoying when there is a meal which could so easily be gluten free but some random food producer decided to add a dash of something. It is also food on the go, so while everyone else is deliberating over which of numerous Tesco meal deals they can have for lunch, I am lucky if there is one, probably with a separate sauce I can't actually put onto it.

I do cook quite a lot myself so that makes things easier. I find the stress around eating out means that I don't really enjoy it anymore. Either the staff are really relaxed and you aren't too sure they have understood or they are hyperaware and you have to wait for the special manager to come and then have the flag of shame on your food, which I do overall prefer but it does draw attention to it.

My recommendations are The Angel at Holmesfield near Sheffield and Oscar and Bentleys in Canterbury, totally gluten free kitchens. I can actually relax when eating out and even try someone else's dessert (which isn't chocolate brownie).

Crikeyalmighty · 30/07/2023 21:58

@Unexpecteddrivinginstructor I can also recommend Rosarios cafe in Bath for brekkies and lunch- most is gluten free and they do fantastic Sicilian chick pea fritters with ham and poached eggs at breakfast- the owner himself has to eat Gf - they also do amazing GF cheesecake and cannoli

ThrappleApple · 30/07/2023 22:14

@Unexpecteddrivinginstructor - we randomly ended up at the Angel with no planning which was a stroke of luck. Keep meaning to go back.

I can recommend AllMineCakes near Southwell, Notts and Yaylo in Reading. Both 100% gluten free.

Daisygrass · 30/07/2023 22:16

Diagnosed coeliac. Food is the enemy.

off · 30/07/2023 22:42

The things I find frustrating are when there is just one item in a long list of things, for example Barley as #15 in a list or a dash of normal soy sauce in something. I totally accept that say a normal pizza has gluten in it, but it is annoying when there is a meal which could so easily be gluten free but some random food producer decided to add a dash of something.

I think of that as Gratuitous Gluten — when there was seemingly no need to put it in there, you can't taste it, it makes no difference to the texture, and they could've left it out with no discernible difference to the product whatsoever, but they apparently just couldn't resist sticking a little bit of gluten in there. Like how almost all supermarket cottage pies have wheat flour in, but some of the shepherd's pies don't (and are absolutely fine with no noticeable texture or flavour deficiencies compared to wheat-containing ones). Why is it in the cottage pie? Who knows? But would you like to buy the Free From version for twice the price instead?

I don't want to make everyone have to suffer slightly worse products just so I can safely eat them, but where the gluten seems to be completely bloody gratuitous and deliberately added, it does bug me.

Crikeyalmighty · 30/07/2023 23:15

Can anyone tell
Me why packs of sushi have gluten? I can't for the life of me see what it is, unless it's the little separate thing of soy sauce? In which case why not say, so I can eat the sushi and just not use the soy sauce.

dragonbreaths · 30/07/2023 23:26

Crikeyalmighty · 30/07/2023 23:15

Can anyone tell
Me why packs of sushi have gluten? I can't for the life of me see what it is, unless it's the little separate thing of soy sauce? In which case why not say, so I can eat the sushi and just not use the soy sauce.

I think its the flavour in the rice, the sushi vinegar

NeverDropYourMooncup · 30/07/2023 23:27

Crikeyalmighty · 30/07/2023 23:15

Can anyone tell
Me why packs of sushi have gluten? I can't for the life of me see what it is, unless it's the little separate thing of soy sauce? In which case why not say, so I can eat the sushi and just not use the soy sauce.

A fair amount of wasabi contains wheat, as does inari tofu (soy sauce), the mushrooms have soy sauce in them, half the fish and there's a shit ton of cross contamination in the small number of factories that make all the supermarket sushi from things like tempura or ebi prawns.

Occasionally, there will be something that doesn't - but I treat it as inherently more unreliable than the specifically labelled GF snacks.

OP posts:
Chrispackhamspoodle · 30/07/2023 23:30

Coeliac and Dairy intolerant DD14.We are in Thailand on holiday. First time in years she has been able to eat with choice from menus.Everywhere has taken our laminated print out seriously from the big hotels to the street stalls (we put well known glutenous brands such as stock cubes etc on it too)and she hasn't been glutened once (unlike Belgium centre parcs which completely spiked her).It's been such a good experience and she's not had to resort to anything processed.Beautiful gluten free pasta dishes available even so she can have a break from the Thai food.
But back to Britain...can I make a special mention to Itsu once her favourite fast food resturant where she can now not eat anything and to barley being in almost all normally priced cereals for NO good reason.And the only choice being a packet of crisps or a crappy pre wrapped brownie bar in coffee shops.And don't get me starred on food tech at school...she now does food based word searches in the library whilst the rest of the class cooks

Crikeyalmighty · 30/07/2023 23:50

@Chrispackhamspoodle Yep - itsu is now a minefield

ThrappleApple · 31/07/2023 06:41

@off - and then there's the things that contain wheat flour when traditionally there shouldn't be any flour involved - onion bhajis, poppadoms, macarons to name but a few

ThrappleApple · 31/07/2023 06:42

Oh, what's happened to itsu? I don't live near one anymore so haven't visited since I last went to the airport.

Unexpecteddrivinginstructor · 31/07/2023 07:44

And don't get me starred on food tech at school...she now does food based word searches in the library whilst the rest of the class cooks

You would think that they would understand. Fortunately it is me not my dc affected, as I could not be in a kitchen with wheat flour 'in the wild'. I can cope with the normals having pizza but I can't cope with wheat flour in the kitchen. We don't have any in the house. They all have had to take in flour for food tech. Reactions have varied from not allowing any deviation from recipes and then being criticized for not looking like it should through to high praise for adjusting the recipe. I never eat the proceeds though. The current one is not bad and lots of the recipies seem to call for blocks of pastry so that is fine.

I am going to add gratuitous gluten to my lexicon. I am sure some places do it to bump the prices up. Tempura chicken at Aldi is all gluten free and a reasonable price. Sainsbury's and M and S have two versions so the they can add the coeliac tax to it.

@ThrappleApple we don't live close enough to go often but it is great to find a gastro pub which is all gf so whenever we are in the peaks I try to book in!

Happyfluffball · 31/07/2023 07:59

Just thought I would let London gluten intolerant visitors know, I have found gluten free pizza that actually tastes comparable to gluten full pizza. It's from Good F'ing pizza. It changed my life. I have up on pizza before this. The worse offender is the GF one from Franca Manca. That was so dry and nasty.

Bobsledgirl · 31/07/2023 13:32

Work social occasions. No one considers gf when booking nights out etc. I just don’t bother going.

PickAChew · 31/07/2023 17:10

M&S is terrible for gratuitous gluten. I've given up on their one GF sandwich thst doesn't contain cheese as it's beige and has so much mayo in that it goes right through me, anyhow. Loads of salads that have a little bit of soy sauce or a dressing with wheat in or a sprinkling of crumbs of some sort. If I'm buying lunch there, out and about with Ds1, it ends up being a lacklustre pork pie or some sausages with ketchup.

off · 31/07/2023 18:35

PickAChew · 31/07/2023 17:10

M&S is terrible for gratuitous gluten. I've given up on their one GF sandwich thst doesn't contain cheese as it's beige and has so much mayo in that it goes right through me, anyhow. Loads of salads that have a little bit of soy sauce or a dressing with wheat in or a sprinkling of crumbs of some sort. If I'm buying lunch there, out and about with Ds1, it ends up being a lacklustre pork pie or some sausages with ketchup.

What is it with GF options and cheese? Back when I used to have to avoid dietary pressor amines like tyramine (which any aged cheese is potentially heaving with, though non-aged cheeses like mozzarella and cream cheese are okay) in addition to avoiding gluten and excessive sugar, my local chain coffee shop served precisely two gluten-free food options: brownie, or cheese and ham panini. I suppose I could've had cold panini and picked the cheese off, but I also happen to bloody loathe cheese and the rancid taint of it lingering on anything it's touched. And at that price, anything I've paid for, I want to sodding well eat, at the appropriate temperature too.

I know cheese is something many consider a no-brainer flavour booster, which adds textures many people enjoy as well as richness and umami, while improving satiety and, in the case of a toasted sandwich, gluing things together a bit. But not only do some people have to avoid cheese for medical reasons (like I used to) or choose to avoid it for health/ethical/religious reasons, from what I've seen IRL and online there are more people who actively dislike aged cheese than seems to be commonly acknowledged. I frequently come across others like me, who dislike aged/matured cheese (though many who dislike it are, like me, okay with un-aged cheeses like mozzarella, halloumi, cream cheese or cottage cheese, because they don't have that decomposed, bacterial flavour that tells my body to violently reject it as dangerous).

I know that if you only sell one GF sandwich, then whatever you pick, someone's going to have a problem with it. But please, for the love of cheese-dodgers, at least make it a different bloody thing in different places!

You could do a single GF sandwich option that's slathered with copious mayonnaise, to annoy GF mayo-haters plus vegans and those with egg allergies. Or only one with plain ham and butter to irritate GF veggies, vegans, milk allergy sufferers, people who prefer complicated sandwiches, and some religious people. Or only one with houmous and red pepper, to irk the GF legume- or sesame-allergic, people with a religious objection to garlic, and those who believe sandwiches should ideally be less soggy and unappealing than the sponge left at the bottom of the kitchen sink when the scummy water's been drained.

Hm. That was a longer rant than I intended. I would never whinge this much normally; it must've been building up and got released here… 😅

We're meant to be glad we're being catered to at all, I think. People generally seem to be allowed one dietary need, preference, or violent dislike before being considered difficult, and we've already used ours up on the gluten.

I just really don't like aged cheese. It's one tiny bloody food category, but so hard to avoid, especially when already restricted by coeliac disease. I wish we didn't have this cultural norm of treating cheese as a totally innocuous, unarguably delicious ingredient that unquestionably improves anything it's added to, something the ubiquity of which no reasonable person could possibly object to.

Unexpecteddrivinginstructor · 31/07/2023 18:56

@off careful otherwise people will fall into the one for all trap. I hate buying the only gluten free pizza option in the shop, only to discover it is also vegan. Nothing against vegans/ people with milk allergy who are probably also a little frustrated that they have to eat gf too. Soon it will be a vegan cheese panini which we should all be grateful for.