Would anyone be up for a coeliac chat thread?

[Squirrel125]

Umm...that's it, really! I was thinking a thread for people with coeliac or a coeliac sufferer in the household where we could share recipe ideas and any other questions might be helpful. I did briefly follow something like this on FB but found it a bit intense, as FB groups tend to be!

My DD (12) has coeliac, diagnosed last year. Still getting to grips with some food alternatives but we have quickly found specific favourites (all in different supermarkets, of course!)

So my first question is...any ideas to make GF couscous a bit more flavoursome?!?

Oh no! I've never heard of the paper straw thing but was the smoothie from a cafe? If so then I'd guess the blender would be the obvious suspect.

Are you sure it is a gluten reaction? A few years ago I seemed to have a reaction every time we went out to eat despite being really careful. The culprit was actually sweeteners in soft drinks (it was about the time of the sugar tax so they'd started sneaking sweetener into everything)

He’s reacting so often despite all of the precautions we’re taking so we are wondering if there is something else going on. He had an endoscopy last week and the results should be in at the start of next week so that may shed some light on things.

We did think he may also be sensitive to oats but he had them everyday and they don’t seem to cause problems during the good weeks. There is a high chance it could just be his general unthinking carelessness, I had to stop him taking a drink out of his brother’s water bottle the other day. He gets so sick, you’d think it would make him ultra cautious but he just seems to switch his brain off occasionally - in typical 13 year old style 😭

This is what the national coeliac Association Boston says;

“As we have become more aware of the negative environmental impacts of plastic straws, other alternatives have entered the market. Unfortunately, some of the eco-friendly straws may contain gluten, and this presents new challenges for those of us with celiac disease and other gluten-related disorders.
Straws to avoid:

• Straws made from wheat or rye straw (these are the stems of the wheat or rye plant, the stem does not naturally contain gluten, however there is a very high risk of cross-contact, stay tuned for test results on wheat straws.)
• Pasta straws
• Cookie straws

So far in my research I have not found any of the paper straws to contain gluten. According to Tricia Thompson from Gluten-Free Watchdog there is no evidence that paper straws contain wheat starch.”

But how do we know if the straws used in cafes are simple paper straws or one of the problematic ones?

Ah another one discovered this weekend to mention that I had forgot to check on - Lea and Perrins- not GF in Uk but GF in the USA - have banged it in recipes simply presuming it was fine.

This is a helpful thread! I went gluten free in 2018 when I got Graves Disease - internet woo said it might be worth a try for thyroids... going GF had the unexpected but welcome side effect of clearing up my lifelong IBS! 😄 I suddenly realised it wasn't normal to feel terribly bloated on waking, as if I'd eaten a full Christmas dinner in the night... (pretty sure I hadn't)...

But I tested negative for coeliac twice (NHS blood tests) and I miss real bread and pasta, so I do the occasional 'gluten challenge', and have just called a halt to a six week one after it threw up awful symptoms: splenic flexure pain, sigmoid pain, gastritis, 'the bloats'... but also joint pain - lower back and pelvis, wrists, elbows, scapula, knees... Also my breasts and lymph nodes under the arms got tweaky! In fact, I got a general 'premenstrual' feeling, despite being ten years out of menopause. So I guess this is NCGS? Which does or doesn't exist, depending on who you believe...

Anyway, to add my two penn'orth gleaned over the past six years, Sainsbury's GF nacho chips are nice (I like the 'cheese' ones), though a lot of crisps are GF anyway (Manomasa do yummy ones). Sainsbo GF TTD pasta in the black packets is nice, also their GF oat and sultana cookies. For bread I like Markies - the seedy and the oaty loaves, but they really need toasted. Sweet potato wraps are good, rice noodles, and Nairn's cheese oatcakes and their ginger and choc chip biscuits are nice.

So I hope this adds to the general GF knowledge bank! 🙂

Plus, Sainsburys do nice GF chicken dippers, if you're in that mood. However, they used to do a really lovely GF frozen lasagne - it didn't have the preservatives and gubbins on the fresh version, so was less UPFy to eat... but now they've replaced it with an awful Kirsty's one which is shocking - the ingredients list looks like a chemistry exam... 🤢 And it boasts that it's 'dairy free', which is a particular bugbear - when they decide to do one product free of Everything to 'satisfy the free-from crowd'...

@ChimChimeny can you decant a jar into a squeeze bottle? https://www.procook.co.uk/product/procook-dressing-bottle-grey?nbt=nb%3Aadwords%3Ax%3A19857267750%3A%3A&nbadtype=pla&nbbmi=127414221&nbpc=online&nbbpi=8451&gadsource=1&gclid=EAIaIQobChMIzpXFxZ6chgMVAZlQBh3CRAA1EAQYByABEgLrQQDBwE

@Twotooto are you using gf oats? he might be able to tolerate for so long before they make him sick so I would try cutting them out altogether (if you’re using gf) and see if it makes a difference xx

@Sleepychicken yes definitely GF oats, he’s been fine for up to 4 weeks whilst still eating them so I really don’t think it’s the cause, especially as the gaps between being ill are getting longer rather than shorter.

Most likely culprit is the smoothie either via blender or straw. I wasn’t with him when he got it, personally I’d have said no, but DH is more trusting of cafe workers than I am ☹️

I know it’s worse for him than it is for me, but I’m finding these continuing incidents utterly exhausting. It’s horrific watching how sick he’s been, and I feel like I’ve run out of options of things I can do, everything that’s left is stuff that’s out of my control.

if he’s going to eat out he will need to be very good at politely self advocating. There is a fine balance between not speaking up and being rude but it is possible to say so,thing along the lines of “I’m sorry to have to keep asking questions but I am coeliac so it is important”. There are lots of people eating gluten free but not coeliac so some cafes don’t take it as seriously as they should.
Then you also have to be cut throat. Once somewhere has glutened you, don’t go back. I have a short list of local places I will eat, in the early years lots dropped off the list but nothing recently.

Blender cross contamination sounds like the most likely culprit.

I had a very confused lunch today. I get lunch at my school, its a serve yourself kind of thing and I took rice without looking too closely at it and sat down, then one of my teachers who also has coeliac disease came over and told me the rice has oat in it, there was a note above the serving dish but I didn't notice it because I was on autopilot and it was just pen written on the glass rather than the usual stuck on label, and rice is usually fine of course. Chucked my food, thinking phew that was close, and got a new meal, with the non-oat rice then the kitchen workers came over and told me it was gluten free oats in the rice anyway!
Had an issue there once before, when they accidentally labelled the normal spinach pancakes as GF pancakes.

He will tell people he’s coeliac and that he needs to avoid cross contamination. He told me they used a different blender for the smoothie. He was at a friends recently and managed to spit out some barley containing juice without effect and they cooked him a GF pizza safely and avoided cc, yet places that are food safety trained can’t get it right!!

Honestly, don’t want to feel like I’m picking holes in suggestions. I’m genuinely grateful for the responses, just feeling really down and frustrated with it all and need to moan, but I think everyone in real life is sick of me.

He’s been sick every 2-3 weeks since Feb, when he gets sick it takes about a week to recover. The longest he’s gone without being sick is just over 3 weeks, which included a holiday where we ate out everyday!!!! Some incidents had very obvious triggers, like when he ate some non-GF chocolate a friend gave him without thinking, but some are total mysteries. He’s just had 2 weeks of being on great form and now this has just feels so unfair.

@Twotooto its awful, I think it’s worse as a mother, you would take it 100 times to ease it for them! Someone posted a link up thread for me about unresponsive coeliac disease, have a read of that too - I’m reacting all the time and don’t know why so I totally understand your frustration, my bloods are perfect so I know I’m not eating secret gluten 😢 good luck for the results, im sending a hand hold xx

@Twotooto sending hugs

@Crikeyalmighty Asda does an own brand gf worcs sauce!

@Squirrel125 as does Sainsbury's - found it today !! Cannot believe I never noticed this

What about Heinz beans?

Heinz beans beans are gluten free.

@Wallingtonhall apparently Heinz beans with sausages are no longer GF.

Aargh, accidentally glutened myself with Tunnocks teacakes at the weekend.

I am an idiot and had forgotten about the biscuity bit.

@Twotooto when researching eating out in Orlando I read stuff about the paper straws in the Disney parks not being GFso it is possible that's where it came from.
We're taking reusable ones just to be on the safe side.

@ChimChimeny yes there were lots of references to Disneyland in the stuff I was reading. There are no definitive answers though - am going to avoid just in case.

My other theory is that he’s allergic to hazelnuts as they seem to be involved in some of the previous incidents - it’ll be one way of keeping him out of the Nutella if nothing else 😂

Hi everyone. My granddaughter has been GF now for about three weeks. CD diagnosed after blood test result which was over 10x the threshold.
Yesterday she had diarrhoea 8 x about 2 hrs after her lunch which the nursery had ordered as GF .
My question is ,could she have potentially had a reaction to unsuspecting gluten in her food? Would it be possible for this reaction if she has been gf for three weeks?
Diarrhoea has never been one of her symptoms, she has had chronic constipation since weaning and she is 4 now.
Am not blaming nursery but just trying to work out if this is potentially a Gluten reaction. This is all so new for us . TIA

It sounds like it could be a gluten reaction, the reactions seem to get worse once a GF diet has started. It would be worth speaking to the nursery to make sure they fully understand cross contamination risks etc. Although it may not be from the nursery lunch it could be from home as it can take a while to get a full grasp on just how many products contain gluten, maybe Worcestershire sauce, stock cubes etc.

Thank you for your reply. Yes the cross contamination is a lot to think about. I was surprised that Marmite has gluten in it which we had been giving her for first couple of days!