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?!?

@Crackwillow I get that too, when I check if DD's food is ok. She's at that stage of being really embarrassed by her mum so she'll be sat there cringing while I'm questioning people 😝 oh well, it's defintely better to be safe!

@ChimChimeny I know, but for your daughter, it is better to have an embarrassing mum than being glutened. it's particularly annoying when they profess to understand it when they don't. This was a work do. I will bring my own food next time.

When I get glutened I get diarrhoea but I am interested to hear if anyone suffers constipation instead. My DS is having various tests including celiac blood test but his symptoms are stomach pain and constipation.

@MarchHares my daughter has the same symptoms as your son. But biopsies say she doesn't have coeliac disease despite being clearly very intolerant to gluten. We were so certain that she did have it, I'm still not convinced that she doesn't. But that's probably because I'm still looking for answers so that I can help her feel better.

@OneSmallPieceOfCheese that’s very interesting, are her symptoms better on a gluten free diet? Also is her doctor still looking for a reason if they have ruled out coeliac? Feel for her as ds is fairly miserable atm, but we are waiting on scans and bloods so hopefully there will be something we can treat.

Yes, she is very strictly gluten free at the moment as it helps a lot. She still has constant pain but she can at least go to school and do normal stuff. When she eats gluten it really puts her out of action. Bloods suggested coeliac but not conclusively, then the endoscopy ruled it out and she was diagnosed with chronic gastritis and peptic duodenitis. I want to know what caused it - my question at the next appointment will be whether gluten could cause gastritis if not coeliac. And if it could be something autoimmune as the normal culprits seem to be alcohol and long term use of nsaids. Her pain started when she was very small so neither of these apply to her (obviously!).

I get both constipation and diarrhoea when I’m glutened, I’m suffering terrible symptoms again definitely not having gluten - my bloods are all normal, I’m getting sent for SEH cat scan next week, anyone had one or any ideas why I’m suffering? Thanks x

Bookmarking because 4 year old GD diagnosed last week. Shall be back later to read the full thread . So much to get our head round TBH !

Hi everyone.Am so glad I found this thread. A a big thank you for someone flagging up that marmite is not GF 😩
So 4 year old Granddaughter diagnosed with coeliac last week.
Blood test results very conclusive and she is anaemic. Just a shame that her results were not flagged up when the blood tests were taken in January and daughter wasn’t aware they were testing for coeliac…anyway that’s another problem to investigate once we have got our head round the coeliac diagnosis.
Seeing dietitians next week.
So much to learn and think about .
Very tricky trying to explain to 4 year old that she cannot eat the same food as the others at nursery,and suddenly her favourite snacks are not allowed. We are obviously trying to be positive but we are as a family feeling overwhelmed.
The cross contamination is also a lot to navigate.
If anyone else has a young child diagnosed I would be so grateful for any top tips about anything,food,parties,arranging kitchen etc .
Thank you in advance.X

@Cannotbeasked
Holland & Barrett do a GF yeast extract, just buy a jar for home, one for grandmas and one for nursery. There are other GF brands also.
https://www.hollandandbarrett.com/shop/product/meridian-natural-yeast-extract-60002617

I believe Tesco own brand marmite is ok.

my Dd was a teenager when diagnosed so understood it a lot better. However you might f8nd with your dgd that the longer she is gluten free the more violent a reaction she will have if she eats gluten. Though this will depend on the individual. Some never get the vomiting, etc. but if she does she will understand the need to be careful better I guess!

I would say try and find snack alternatives. I joined as many uk based fb groups as i could to get food and snack ideas. So Twirls instead of dairy milk type stuff. The special gluten free marketed stuff is expensive but obviously an option. So Dd still has hobnobs and Twix cookies and I try not to cry at the food bill. Parties I would imagine will be a nightmare. I would not trust any other parent unless they have a coeliac child /are coeliac themselves so I would take a box of party food.

school meals will be another issue…..is it pack ups at primary school? If it’s school meals you will need to make sure they understand cross contamination. Pack ups are easier to police. Sliced bread for sandwiches tends to be rubbish (it’s ok toasted) but Warburtons do some soft square rolls which are nice enough. I think they’ve just brought pittas out.

yes to getting to grips with cross contamination. So separate butter, jam, marmite, etc. separate toaster or at least toaster bags. Don’t use the same wooden chopping board. Wooden spoons could be an issue though I’ve found them ok as long as dish washer washed. We bought gluten free stickers off Amazon and put those on the butter, etc.

read labels of everything even stuff you wouldn’t expect like supermarket cola and some spices are things I’ve found a labelled warning for. If I the ingredients it will be in bold. But beware of under the ingredients any non bold warning saying “may contain traces of”. Ie walkers crisps which Dd can’t eat.

@Sleepychicken

If you are a Coeliac with ongoing symptoms you might want to take a look at this Non responsive and refractory coeliac disease - Coeliac UK

@Cannotbeasked yes, everything @CormorantStrikesBack says! Parties can be tricky too, I'd recommend a packed lunch for them (full of unhealthy party food and treats, obviously 😉)

My dd was also older when diagnosed but having worked in a primary school I can say that I was always so impressed by the way that kids with various allergies and dietary requirements knew and really took ownership of what they were allowed. I remember being quizzed by some infant school kids at a school disco on whether the sweets contained certain ingredients. Obviously school / nursery need to play their part too but I think you'll be amazed in time at how your dgd will get used to it.

When my dc started going to parties I would go too. When the food came out I would put what they could have on a plate as there was normally some fruit/veg and plain crisps as a minimum. I would then pull some gluten free pudding items from my pockets as most party sweet food has gluten. I might also make sure they had an early lunch before or late lunch after so they only needed a snack.
If parties are at a venue like soft play who are providing the food then let the host know. Nowadays these types of places will usually offer a gluten free alternative. One time it was big pizzas cut and put out for everyone to share. Everyone was jealous of my dd who had her own pizza all to herself.
Tesco yeast extract is perfectly acceptable, it isn’t identical to marmite but by the time you get to the bottom of the first jar you are used to it.
Our primary school was fantastic, but they had a kitchen and cooked from scratch. Also the head of the kitchen had a coeliac dd and was happy to adjust any dish as long as she knew what my dd was eating in advance. Packed lunches are more difficult and she would stand out more as everyone else would bring sandwiches.

One thing that had totally bypasssed me and I realise now I was getting glutened every week are the packets of Coleman's chiil seasoning- I honestly cannot think how I missed that they had wheat in them- but I had- I haven't used them now for past 2 weeks and havent had my weird 'glutened' headache since.

My DD was diagnosed at 4, I remember the adjustment period was not fun, very upset that she couldn't eat her normal foods :( Though luckily we're in Finland so nursery and school have been absolutely fine for GF lunches, same for eating out anywhere, but it seems to not be so good in the UK so packed lunches are likely safer. Me and DD both like Schar white bread for sandwiches and I know it was sold in the UK last time we were over at least, its the most sandwich-like bread I've found.

For parties I always offer to bring her own food with her though most hosts have made sure to provide something GF, some even getting a GF birthday cake so she didn't miss out on anything.

We have a separate tub of butter for me and DD (do the same for any other spreads), and our own toaster. The gluten snacks go on a separate, lower, shelf in the cupboard to keep cracker crumbs away from our GF stuff.

@Cannotbeasked the good news that she has her diagnosis, my DS was diagnosed about 6 months ago and it is incredibly overwhelming at first but it does get better. I won’t repeat some of the excellent tips you’ve had here, but will add to it.

I signed up the Coeliac UK website and use their app all the time when I’m shopping for scanning products.

I’ve also found a few coeliac posters on Instagram to be really helpful. Things like watching videos of how people speak to restaurant staff was really helpful for me.

Hi everyone thank you for your replies 💕I shall read them when I get home from work this evening in more detail. Really kind of you to all take the time for me.
Its just a lot to take in and really appreciate any support.Xx

When you get time read the thread from the start as there is lots of good information about things to watch out for and good random gluten free products.

One to watch out for is the Jamie Oliver spice pastes. I check everything religiously but somehow failed to check that - I think it is the Korma one. Very disappointing that it contains wheat flour - god knows why - but one to be careful to check.

@CurlyWurly1991 it's easy done-as I mentioned below on Coleman's chilli mix - I had been having it every single week - hence constantly fluttering myself!

Another thing to think about is keep checking stuff. An item can be safe for ages and then they have an unadvertised recipe tweak and decide to chuck barley or wheat in it!

@CormorantStrikesBack that’s a really important point, I think some manufacturers have definitely tried to reduce costs as wheat is a cheap filler ingredient

Hey everyone. This advice has been really helpful. It’s so good to have advice from people who truly understand. I am going to recommend that my daughter joins MN and reads this thread and reaches out if she needs advice.

So true about ingredients changing (looking at you, Waitrose red lentils).

Anyone got any recommendations for red lentils that don't have a "may contain gluten" warning?