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Newly diagnosed coeliac - feeling overwhelmed

36 replies

Didthatreallyhappen2 · 28/08/2018 15:54

Just that really. Diagnosed a month ago and am completely overwhelmed with the amount of things I can't eat. It seems that most things from my weekly shop do have gluten in them and, whilst there are GF alternatives, some of it tastes (and has the consistency of) sawdust and it's all very expensive. Even eating out (not that we can afford to do that very frequently) seems fraught with problems.

Can anyone please hold my hand and help me navigate this lifelong situation? My mentality has always been to deal with whatever life throws at you and "just get on with it", but I'm struggling a bit.

Thank you.

OP posts:
spacecadet · 01/09/2018 00:50

Also if you like thai food one of the easiest things in the world is a Thai green curry. Can of coconut milk, spoonful of green curry paste, bag of veg and some chicken and away you go. No need for stock cubes - which are always a bit of a gamble in my experience. Also GF pasta with pesto and a bag of spinach. Super fast and super easy. I've also recently discovered M &S GF sliced bread (So much nicer than the Genius stuff) but quite pricey. A cheaper version is Lidl's which doesn't fall apart the way the others do. You might also need to be careful with diluted drinks and fruit syrups...

tkband3 · 01/09/2018 16:20

You've had loads of great suggestions so far, but I just wanted to add a few... My three daughters all have coeliac disease, so we largely eat gluten free as a family and there is very little we find we can't eat/do.

Bread really is the one thing that can't be properly replicated gluten free. My DDs were too young when they were diagnosed to know the difference, but it is much harder to come to terms with gf bread when you've been accustomed to gluten bread. Our favourites are M&S brown bloomer and seeded bread, Genius Toastie and Schar baguettes and panini.

Most supermarkets now do extensive own brand gluten free ranges and have whole aisles dedicated to free from foods. But don't get suckered in and buy things 'free from pesto' - standard pesto should be gluten free, as well as pasta sauce etc. You will need to check labels, but just because something doesn't say gluten free, doesn't mean it isn't - if it doesn't say 'may contain gluten sources' or something similar, then you should be fine.

If you haven't already joined Coeliac UK then it really is worth doing, if only for their fab app where you can scan barcodes of food in supermarkets to see if it's gluten free. It's really helpful.

Eating out is getting easier and easier, with an increasing number of pubs and restaurants upping their game in terms of their gluten free offerings. Be careful of chips though - a lot of places still haven't learned that if they're fried in the same oil as gluten containing things, then they're not gluten free. If you're on Facebook, it's well worth joining the Coeliacs Eat Out Too - a brilliant group where people post about experiences in restaurants around the world, so you can search if you're going somewhere in particular. We went to Devon for a week this summer, and I was able to find a few places in advance where we could eat (and we ate very well - even gf pasties and cream teas!).

I really would recommend getting a separate toaster - it's a pain in the arse having to use the grill or toaster bags every time. You'll also need separate butter and things like marmite, peanut butter etc as they will have crumbs in from gluten bread.

I do a lot of baking and hardly ever use recipes designed specifically for gluten free flour. However gf flour does have a tendency to absorb more liquid, so depending on the recipe I add a couple of tablespoons of milk which helps. I promise you that no one notices the difference...I held a gluten free coffee morning in aid of Coeliac UK a few months ago and the cakes pretty much sold out Smile. If you want any recipes or tips, please PM me.

I know it's overwhelming and tricky to navigate to start with, but it isn't as awful as it seems to start with. Any queries, don't hesitate to ask Smile.

Didthatreallyhappen2 · 05/09/2018 14:49

With apologies for the delay in replying - huge, huge thanks to everyone that has taken the trouble to respond. Having no symptoms meant that I never dreamt that I would have to change my diet and food habits (toaster pockets anyone), but after all your lovely comments I am feeling more positive about the entire thing. I am getting better at learning what has gluten in it and what doesn't, although it seems to be hidden in so many things that I have struggled to identify where it is. However I am now on my 8th day entirely gluten free (might not sound like long, but I'm getting there), and although my diet has changed, so far so good I think.

I have also noted down absolutely all the suggestions for food (to my delight I found a Juvela white loaf this morning for the first time - in my local Morrisons of all places - although the £2.75 price tag is rather scary), and the offers of recipes. As I suspected, my GP (England) can't help with any foods on prescription, but there seems to be a lot of help out there - ideas about food, eating out, brilliant suggestions for useful websites ( - seriously, thank you for those) although it looks like my love of the occasional Chinese might have to stop.

Thank you all.

OP posts:
Lonecatwithkitten · 20/09/2018 22:15

I just wanted to add you need to regularly visit a variety of supermarkets as they all carry different GF ranges. I also find farm shops and delis an excellent source of more unusual GF products.

CrispbuttyNo1 · 29/09/2018 22:32

Try the new Warburtons gf bread. There’s a brown and a white and both are the closest thing to real bread I have tried

Daffodils78 · 29/09/2018 22:54

Hi 😀 five or so years in now. To start with I tried to eat as I had before eg. Lots of substitute breads and other products and cost A LOT of money.y baking disasters were never cheap either! Now I buy gluten free bread and freeze it (own toaster) as I have about 1-2 slices a week. I buy gluten free pasta occasionally, and ready meals sparingly.

I eat- meat or fish with veg/rice/potatoes, fry ups (check labels on hash browns, chips and sausages), sausage and mash, baked potatoes with various toppings, drink juice, coffee, milk shakes, and on occasion cider or energy drinks. I snack on fruit yoghurts, cold salads (beetroot, potato, coleslaw etc.), fruit, veggie sticks with hummus/ bean dip.
I rarely cook from scratch and my food shop is about £40 (£65 with the kids as well).
I never feel deprived, and occasionally treat myself to a gluten free pizza or Mac and cheese to keep my carb liver happy 😂

Daffodils78 · 29/09/2018 23:01

In case no one else has mentioned it: join celiac UK!!!

notapizzaeater · 29/09/2018 23:05

There's lots of groups on Facebook which have lots of info on.

M and s sausages are all gf.

If we have burgers I use potato waffles as the bun. I use thin omelettes for wraps.

What sort of food do you like ?

Gf Yorkshire's :

4 eggs
90g gf plain flour (I prefer Asda)
Heaped tablespoon cornflour
Milk to double cream consistency.

Cook as normal. I always make double and put the batter in the fridge to make pancakes the next day.

It does get easier, it's second nature now (ds is coeliac)

Alaaya · 29/09/2018 23:15

Hello! My DH is 9 months from diagnosis. In our case we moved the whole family to GF as it seemed easier. We mostly ditched bread totally as it always tastes crap and focus on rice, GF pasta (which tastes nice) and stuff like quinoa. Cooking from scratch means we dodge stealth gluten.

Honestly, the adjustment to GF in cooking was quite easy - the big trap is going out. My advice is to try and have a stash of Free From snacks at your desk and work and in the car as that is when DH really struggles - he can eat nothing in motorway services for example - and scope out your local eating out options - Pizza Express is good. Oh, and invest in posh sausages. Cheap ones always have gluten but Tesco Finest are great.

And it does get easier, promise!

AllergicLaura · 07/10/2018 17:30

Hi I'm Laura, a graphic design student at Loughborough University who suffers from night-shade food allergies. This makes eating out with friends/ families and colleagues hard and is sometimes embarrassing. I have an idea and need your help please… if you or someone you know suffers from food allergies could you please fill in this 2 minute survey

www.surveygizmo.eu/s3/90105507/Food-allergies

it would be so so helpful.

I think there could be a really good digital solution to help eating out which would really help to stop people with allergies or with members of their family who have allergies feel anxious.

sollyfromsurrey · 09/10/2018 22:28

I've just one thing to add to everyone's comments. Check out how you are with oats. Even gluten free oats. Oats have a protein that is very similar to gluten and about 30% of coeliac's can't tolerate them.

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