Coeliacs (and Others) Assemble!

[NeverDropYourMooncup]

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?

I usually get them in Asda. Best GF roll by far! So nice warmed up in the oven!

My husband is a vegetarian coeliac we mostly all eat gluten free at home because it's an absolute bloody nightmare otherwise with cross contamination to worry about. The one GF thing I won't eat is the bread because it's awful. We can't do spontaneous eating out, we don't get invited to BBQs because it's too much hassle for people, every time we go to my parents for tea my mother gets in a state for days about what to cook my husband and holidays abroad are probably out. It's not his fault but god it's joyless sometimes. I look forward to trips out with friends so I can eat all the meat and bread

Three out of the four of us are coeliac here.

The one that gets me the most is when people say to swap to fruit and veg for snacks instead of the stupidly expensive biscuits or cakes. I'm sure my 8yo will love munching on her carrot at a birthday party whilst everyone else enjoys the buffet 🙄

M&S have a lot of stuff that is gf but not in the free from bit. Becky excell is good for finding them and her recipes are good

Hi @NeverDropYourMooncup I'm with you - both my DC are coeliac. My DD is worse in terms of reacting to gluten. She has been so poorly recently and we couldn't understand how her symptoms have flared up when we are all GF and we are super careful when out and about. It turns out that bloody Tesco's GF onion rings (which I used in her packed lunches) contained gluten!! I am furious but had no idea until Becky Excell announced it on her insta. It's appalling - apparently people were messaging Becky to tell her that the GF contaminated snacks were still on sale on shelves!

@LadyWhistledownsPen I have to say, Tesco's seeded bread and Promise bread are really quite nice, especially when toasted! I found Schar to be revolting!! Also, Old El Paso's tortilla wraps (6 for £3, although the size of a saucer!) are delicious and my DC love them.

@icclemunchy I use sausages from M&S - gluten free and delicious ! And as you say a lot of fresh stuff like this isn't marked as such

It's called Hopefully Made on Milk Street. They do lovely pancakes, bagels, cakes and sourdough toast-all GF.

Bully for you. OP is not being unreasonable.

I think I might be getting migraines for gluten so have been off it a week or two. I find it really easy without buying gluten free speciality products. I’m vegetarian maybe that helps. I eat a lot of vegetables and veggie burgers

Joining in!

just to say if you’re in London and need to eat a quick lunch Leon’s is my go-to place!! Think the owner has a gf relative or something so they have some gf friendly options.

I must be less discerning but any gf pasta is fine by me - interested that most people say they don’t eat it/ like it

Oooo yes the Lounges!!! There’s one in my town and I’m in love. So happy

oh and also huge win is PHO chain restaurant. The entire menus bar one thing is gluten free!!

This is like that thing where a politician says they can live on benefits, breezes through a couple of weeks just fine, and comes out of it saying I told you so 😅

I'm glad you're not having too much trouble with it, but come back when you've done a Christmas, a foreign holiday or two, a few meet-ups with friends, a big family get-together, a drunken night out, a few shopping trips where you can tell your companion wants to stop for the usual coffee and cake but feels guilty because you can't have cake, fifty or so weekly shops where you've checked every sodding thing for "may contain" notices that can change without warning, a few evenings where you're tired and might normally get a takeaway but you know that nowhere near you has safe cross-contamination practices, and when you're fed up of lunch options revolving around baked potatoes or prep-heavy salads and want to just stick something in a bread roll or get a meal deal. With no cheat days.

A lot of what I find annoying isn't the expensive, unpalatable bread/pasta substitutes or whatever, it's having to become a decent facsimile of a disordered eater — always checking labels, not always trusting other people when it comes to food, planning ahead for access to safe foods, not being able to fully participate in certain social things, etc.

Also, it's very different psychologically, knowing you have to avoid it scrupulously, for life, or face permanent consequences (like osteoporosis, nerve damage, even cancer). "Lifelong and absolute!" as the consultant who diagnosed me was fond of saying, repeatedly 🙄 I have migraines too, so I know they can be utterly horrendous and wreck your life if bad enough, and I've also made modifications to my lifestyle to avoid triggers, but in most cases, slipping up and getting a migraine won't cause lasting damage.

Watch out for those veggie burgers, BTW. Outside of the "gluten free speciality products" section, they're the kind of thing I'd be very suspicious of containing gluten. Though maybe you're doing the kind of "gluten free" that just means not eating Actual Chunks Of Bread/Pasta. In which case, fine, but coming onto a thread primarily aimed at coeliacs and saying how easy it is to be gluten-free when you're doing a different, easier kind of "gluten free" is a bit annoying.

Maybe. I eat Beyond Meat burgers, just soy protein. I have been looking at the bread sadly the past few days

Ah right yeah, those ones are gluten free. I was thinking of the type that have beans, veggies, etc. and they're almost always gluteny.

This sounds mean, and I don't intend it to, but while I know you'll have high hopes for it, I kind of hope the GF diet isn't the thing that works for you, and instead you find something else that works that's much less hassle than being a gluten-dodger

I do think it’s helping. I’m still having migraines but not with a severe headache if that makes sense. And not as often. Still hard to live with though. Idk maybe my brains just broken

With 3 coeliac in our household, my bugbear is school using food as a reward - but not for my children.... Kit kat anyone? Oh, you can't eat them .. oh dear, that's a shame .... How hard is it to find something everyone can eat? Or just don't use food.... 😕

My DD is moving up to secondary and the medical team called to ask if there were any particular things they needed to think about. Once I mentioned food tech and food given out by staff as rewards they seemed baffled ....

With 3 coeliac in our household, my bugbear is school using food as a reward - but not for my children.... Kit kat anyone? Oh, you can't eat them .. oh dear, that's a shame .... How hard is it to find something everyone can eat? Or just don't use food....

It carries on into working life, I worked in a place that was big on staff appreciation - we had thank you pizzas, beers, mince pies, biscuits, chocolates, a work bbq etc. at various points. Vegan options always provided but nothing for coeliacs.

Well I was never much of a sharer anyway! Wouldn’t like a shared toaster or a shared fridge, even if I didn’t need to be GF. Life is much easier nowadays though, you can actually join in with pizza or takeaway if you order from certain places. 20 years ago it was just a flat no, that sort of thing wasn’t available. You simply could not eat out, end of. So I suppose I got used to not joining in with food in a social sense. People nowadays are a lot more understanding too, they don’t get weird about personal differences like they used to years ago.

I’m not much of an eater anyway though, so I don’t feel I’m missing out. I would never have had a kebab after a night out, or a cake in a cafe, even before I was GF - because I don’t want to get fat. GF is just a convenient excuse not to join in with stuff like that, I wouldn’t eat them even if I could.

Archeron, I agree that people are much more understanding of dietary needs now, which is great.

But I believe the social meanings of food are also incredibly deep-rooted in us, and I have a feeling that whatever the apparent levels of understanding and acceptance, the effects of a life spent always having different food from everyone else, rejecting other people's food, etc., could be insidiously psychologically and interpersonally powerful. But it's just a feeling. And obviously it's not like we get a choice anyway

I know the specific examples I gave won't apply to everyone (and my university generously put a personal fridge in my room for me quite quickly) — I went through those few examples from that specific time in my life partly to show how much the personal effect would depend on your own tendencies and your previous lifestyle, as I'd mentioned. In that environment, for me, it was tricky. In my current circumstances the social impact is much less, but still present.

Well I've just had spiced avacado and poached eggs with hollandaise on toast in Bills (gluten free) - very very nice .

Unless you are solely living on vegetables and BM burgers and your migraines are being triggered by gluten, rather than poor sleeping position, low neck muscle strength, hormones, sinus issues or are medication induced, there's a very good chance that you're still being glutened, whether from hidden ingredients, cross contamination or failures to label things correctly.

Lactose intolerance - something that can be caused by gluten damaging the part of your intestine that produces lactase enzyme - can also cause migraine. If you are Coeliac, you could also be reacting to gluten free oats, as the avenin protein is very similar to gluten. Again, migraine can be a symptom. Or you've got issues with the tyramine content in pea protein. Or all of the above and more.

Doing a full exclusion diet can also cause headaches - I've seen ones where half the fruit and veg in the world is also excluded because they contain components that are associated with migraine due to histamine/tyramine/sulfites - and you could be just plain hungry.

I do completely sympathise because I had horrendous headaches and migraines from at least the age of 7. It wasn't hormonal; it was a combination of dietary and physical/environmental factors.

Outside the diet arena, what is your posture like? Do you tend to slump forward with your shoulders rounded and neck pushed forward (a fairly typical pain posture)? Is your neck straight and head supported during sleep or is it bent forward, tipped sideways on several pillows? Could a cold pack/packs over your face, scalp and neck chasing the pain around help at all?

It's so hard trying to find out what the issues are caused by, but once you hit on the combination that works, it can be difficult to reconcile how you've had to live in the meantime. And anything that interferes with that working combination - such as gluten free foods being contaminated with gluten, as per my OP - can give you the absolute rage when it keeps on happening.

@NeverDropYourMooncup im definitely having no gluten at all. I mostly eat vegetables and fruit and the burgers. No ready meals. They’re still happening but without the severity. I could look at cutting out dairy to be honest I would do almost anything if it would make it stop. I don’t think it’s my posture. I do hope I can truly get to the end of this, it would be amazing

@Off as a diagnosed Coeliac of over forty years, may I say you are making some very good posts in this thread. I was diagnosed in my first term of University, so I know exactly what you're saying. Coeliac Disease can be incredibly socially isolating at times, and very few "norms" get it.

I hear you, my gluten free friend!

Seaton, wow, forty years! You must have lived through some massive changes… you probably even remember that psoriatic-looking bread-in-a-can that I've only seen pictures of 😅

What's your take on the gluten-free-as-fashionable-diet-for-anyone thing that we seem to be in the end-stages of?

I was diagnosed (what I think was) right at the peak of the fad, when it was causing supermarkets to massively expand their range of GF products, and resulting in restaurants attempting to produce GF offerings (with varying levels of suitability for actual coeliacs). So now that the fad is waning, and I'm seeing shelf-space being turned over to currently-fashionable plant-based products instead, I find it pretty frustrating to not get the range I'd got accustomed to. But I guess we only ever got that extra stuff because the number of people buying GF was being boosted by people who didn't really need it (and I don't mean people who think they have NCGS or whatever, I'm talking about the people who were following the fashion, under the impression GF was somehow nebulously "healthier", or would help them lose weight or become a world-class tennis player).

So maybe I should just be glad that I was eased into my new coeliac life on a cushion of extra products that wouldn't have been economically justifiable in normal circumstances.

Funnily enough, two of the other women I shared a kitchen with in my last year of university (right after my diagnosis) were mostly-GF by choice, of the "avoids actual lumps of bread and pasta, but a shared toaster and the occasional wheat-based treat is fine" type, but were actually very understanding of how different my needs were. I was never glutened from anything in our shared kitchen though the supposedly gluten-free food from the canteen was a different matter. One of the other, non-GF women on my floor decided to do pancakes for us all for Shrove Tuesday, and without making any kind of fuss about it, invited me, made GF batter, and prepped a whole batch of pancakes in a separate pan with separate utensils, enough for me to have some and everyone else to try one as well. I was a few months in to being a coeliac, and I could have cried at the quiet, no-fuss, competent inclusion.

IMO the whole fashion thing has been a bit of a double-edged sword — more awareness of gluten, and more availability of GF foods, but bringing with it suspicions that anyone following a GF diet might be a faddist, and an assumption that food that's okay for someone who chooses a roughly "gluten-free" diet is also safe for those with CD/DH.