Newly diagnosed coeliac - feeling overwhelmed

[Didthatreallyhappen2]

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.

Hello! I'm a fellow coeliac. Would you like a list of foods I've tried and are okay, or even good?

I'm also autistic and have really bad texture and food combination issues, so if I think it's good most people will.

It can seem really overwhelming at first.

If it helps, try making a week's meal plan of all the stuff you CAN eat rather than trying to substitute your before-diagnosis meals. Threads on here will be really helpful.

For example...

Breakfasts - eggs and avocado with spinach, chia seed and GF oat Bircher muesli, GF cornflakes, fruit yoghurt and nuts

Lunches - quinoa salad with halloumi, chicken and avocado salad, jacket potato with beans/tuna mayo etc., soup, rice salad with peppers and tuna and beans

Dinners - chilli or curry with rice (just use GF stock cubes), roast chicken plus potatoes and veg (only need GF gravy), risotto, stuffed courgette/aubergine, tagine

Hope that helps! I find it's better to make things in batches from scratch and then freeze - that way I have ready meals in the freezer and I know what's in them!

Pizza Express do a lovely GF pizza - I'm sure there's a list somewhere of places that are good at GF but I can't find it at the moment.

I can't really hold your hand here - my diagnosis has been drip fed since November last year (abnormal nerve conduction -> low folate -> coeliac antibodies -> gastroscopy and biopsy) but I only got final confirmation last month too.

Essentially, as far as possible, avoid processed foods. Cook from raw. There is no gluten in a carrot or a chicken or an egg. But if the chicken is 'extra tasty' (not that I could ever tell the difference) or pre-stuffed the likelihood is that someone has coated it in or stuffed it with a gluten-containing substance.

Be label-savvy. For example, plain crisps are usually fine. Many flavoured ones have a wheat/flour base to the flavouring that has been sprayed on. Most dairy products are naturally gluten-free but, for example, a corner style yogurt with a flake or biscuit corner won't be.

Join Coeliac UK (assuming you are in the UK) for a year at least (£24) to get a copy of their handbook. Make sure that you get to see an NHS dietician. Discuss with the dietician the level of risk you want to take -- for example, many foods are labelled with the magic words 'may contain gluten' or 'processed in a factory that also processes gluten sources'. My view is that these are largely manufacturers covering their rear ends so that they can't be sued if someone coeliac eats the product and gets sick. At the moment, I will tend to risk these but so far, anyway, my reaction to unintended gluten consumption is annoying rather than incapacitating; others may have a greater sensitivity and be less inclined to take the risk.

Look for help online. I'm not a 'joiner' but if you are then I believe there are local support groups, often through Coeliac UK, in many places where you can go to talk to people with more experience.

But I sympathise. It's hard and dispiriting particularly when you are both diagnosed later in life and the rest of your family then check out ok, so you try to make sure it's your problem not theirs. I have just come back from holiday abroad in a country with mixed understanding, and eating out came down to reading the menu carefully and hoping for the best.

But persevere.

Do you cook? Prepare your own meals from scratch generally? If so then try googling paleo recipes. It means I manage to cook gluten free from scratch, have loads of baked treats/cakes/goodies and meals without feeling hard done to and isn’t over expensive -depending on where you shop, I guess. Eg ground almonds in Aldi £1.29 but more than double the price in Tesco but can bulk buy on amazon (I have prime so no postage) there are loads of alternatives that you can bake at home rather than buying awful GF products but a change of mindset can’t be helpful. A sandwich a lunch is time saving bipartisan have a filling salad instead. Don’t have cereal or toast for breakfast have great yogurt and nuts/seeds instead, dinner have grilled fish/meat,vet,pots- all gluten free.
Eating out their should be a GF menu but mean veg & pots of some kind pretty much covers it as long as they have GF fryers for chips &pot products. What is it that you particularly miss? If you cook from scratch it’s quite straightforward to eat GF and if tired you can get pretty good GF pizzas /meals to save you from occasional cooking

Bipartisan =saving time

Great yogurt=Greek yogurt

Their should be = there should be

Mean veg & pot.... omg MEAT veg & pots
WTH?
Sorry predictive/fat thumbs.....I give up

Give us a rough weekly meal plan that you would usually have and let us make suggestions.

I'm not coeliac but several members of my immediate family are. I can honestly say that with one or two tweaks we largely eat what we did pre diagnosis.

Gosh - thank you everyone.

Suggestions on "decent" gluten free foods would be hugely useful - thank you.

TalbotAMan - you poor thing to have this going on since last year. My own circumstances are completely the opposite. In a nutshell, I have no outward symptoms. Not one. My GP referred me for tests (thinking I had cancer, but that's another story) to the NHS following a single routine blood test. I went privately (DH's work insurance) and in the space of 12 days had endoscopy, colonoscopy and the diagnosis of coeliac.

Maybe that's what makes this harder in my own mind - having never bothered what I eat (and eating everything I fancy), to suddenly not being able to eat most of my usual fare.

My usual diet consists of bread (it would, wouldn't it) and dairy. Toast and cornflakes for lunch, toast (!!!) and crisps with fruit for lunch, and then cooked tea - all sorts of varied things (mince, roast, curry, salad, baked potatoes, pizza, soup etc etc). My downfall is cheese which is my go-to snack (more so than chocolate). I am a rubbish cook, although a good "baker" and do make (or at least did - I haven't tried with GF flour yet) decent cakes/biscuits/scones etc.

I have met with the dietician (yesterday, which is what prompted my post). He (terrified me to be honest) said that unless something is marked as "gluten free", you have to assume that it has gluten in it. Coeliac UK do have amazing lists of everything that is "safe", but I'm reading every ingredient on every item I buy (I would do that before all this happened looking for palm oil which I try to avoid buying, but this is a whole different ball-game). If that's the case, then gluten is hidden in so many things and I'm worried about "slipping up" and having gluten without realising.

Truly - thank you for your encouraging words. I'm going to sign up to Coeliac UK later today.

Well it's bollocks about assuming everything not marked gluten free may have gluten in it. There's a few things that can catch you out but you get to know what these are.

Nestle gluten free cornflakes are pretty good (the honey flakes are even better but many supermarket own brand cereals are ok too and much cheaper. The problem with Kellogs is they put barley malt in them all.

Bread is tricky I'm afraid. The Wharburtons tiger loaf isn't too bad, but is expensive. The Promise bread rolls from Sainsburys are ok. My personal favourite is the Laucke bread mix which you can buy online.

Pizza bases the best I've found are the Bfree ones from Asda and Sainsburys. You can buy gluten free ready made pizzas but they aren't often very good. Pizza express and dominios both do gf pizza for takeaway.

Most other things on your list are gluten free anyway. Cheese definitely is! Most jars of curry/ pasta sauces are naturally gluten free. Roast dinners are easily made gluten free (using cornflour if you make your own gravy, gf gravy granules if not). Most supermarket gf Yorkshire puddings are fine. Most supermarket gf pastas are also pretty good.

Tinned soup you have to be careful with. Heinz tomato is ok, many others are not. Fresh soups don't tend to be too bad.

So, I agree with pps that cooking from scratch for every meal will ensure they're gluten free however it's assuming everyone is able/inclined, and I would like to provide an alternative.

Bread

Genius is okay-ish toasted as long as you get the seeded variety.
Juvela white is the best I've tasted, but it goes mouldy really quickly.
BFree stonebaked pitta breads (really good, I was shocked.)

Cereal

I second the Nestle free-from honey cornflakes.
Quaker free-from porridge oats (if you can have free-from oats.)
Co-op free-from granola.

Ready meals

Rachel's Kitchen macaroni and cheese is nice but very cheesy.
Tesco free-from lasagne is nice.
Tesco free-from mozzarella bites are lovely.

Not quite ready, but easy meals

Aunt Bessie oven chips are gluten free.
Birds Eye gluten free fish fingers.
All free-from pasta is actually nice.
Heck sausages are gluten free.
Heinz beans.
Tesco Finest potato dauphinoise is (surprisingly) gluten free.

Snacks

Nairns gluten free oatcakes are brill, particularly the cheese ones, same goes for their biscuit breaks.
Tesco free-from cookies are awesome.
M&S do gluten free scones (unfortunately they have fruit in them which is wrong, but they still taste nice.)
M&S gluten free millionaires slices.
Nature's Store free-from rice cakes.

What's awful?

Co-Op free-from Coco Pops.
Own brand free-from bread.
Kipling Bakewell tarts.

These are absolutely wonderful suggestions - thank you!

There are obviously foods out there that have no gluten and are, for want of a better word, "normal". And I am learning to look at labels to identify what I can and can't have. Some things (like Tesco own chips) still have me stumped - and the sales assistant in there didn't help, simply telling me that only the Free From section was suitable for gluten free, as EVERYTHING ELSE IN THE SHOP contained gluten. When I pointed out that carrots didn't have gluten, but weren't labelled GF, he didn't have an answer. At least I haven't lost my sense of humour!

And I refuse to go out and buy a new toaster just for me (another dietician suggestion, in case of cross contamination).

I am truly grateful - you have given me such a boost over the last couple of days.

Um, I would do the toaster thing, I'm afraid. That's coeliac 101. As is learning to use butter, spreads, jams etc without getting crumbs in the tub or jar. As is becoming that person when eating out - i.e. asking about everything, including what else is fried in the same oil as the chips, and whether there's a separate preparation area for gf sandwiches.

On the plus side, it gets easier all the time, both as you get used to it, but also as awareness and demand are raised. When our son was diagnosed, nine years ago, his options were incredibly limited, especially at outdoor events; we were at a festival last weekend, and the range of delicious food he could safely eat was incredible (although the 'gluten free' doughnuts were cooked in with the 'normal' ones, much to his disappointment....)

Oh, and Bisto Best gravy granules are gluten free

Have they checked your calcium levels, btw? You might need to top yourself up for a bit if newly diagnosed.

Oh heck - I thought the toaster thing was a bit extreme, but obviously not. :( And I hadn't thought of asking where food has been prepared, so that's another thing I'll have to consider.

You're right about the calcium too. I've got a scan coming up to see if I've got osteoporosis as apparently that and being coeliac tend to go hand in hand. I'm on calcium supplements now, so hopefully, even if there is a problem there, that will improve over time.

I do feel like I've been visiting the hospital every week this summer.

You don't have to buy a new toaster but it might be an idea to get some toaster bags instead.

I also promise you it gets easier. I'm coeliac and lactose intolerant, so my shopping list is more restricted but still good. Try Whole Earth cornflakes & I also like Tesco's Honey Hoops. Seconding the bread recommendations and Nairns oatcakes. Even if you don't shop with them, calling up gluten free on Ocado's search function will give you a starter list for things that are not in the free from section. For instant meals, try Kirsty's from Sainsburys or Ocado. Asda and Tesco do GF ready meals in their bigger shops too. Nice sometimes not to cook from scratch. And you'll get to learn where is OK to eat out too. I go to Nandos, Ask, for tapas at Bar Estilo...and there are plenty more places with good allergen info. There's a learning curve, but you'll be fine.

Tesco own brand chips are fine. McCain chips usually have gluten though they do a gluten free version now.

Just reading back over what you like, I've got a few tips on baking. Because GF is naturally drier in texture, I like recipes that put back some moisture like banana bread. Mary Berry's Victoria Sponge/Chocolate cake makes up perfectly substituting Doves Farm GF flour and Dr Oetker's GF baking powder if needed. Rice flour makes fab if crumbly biscuits. For roasts and mince based dishes, just choose GF stock and gravy mix and you're sorted. Seconding the need for your own toaster, and keeping other people's crumbs out of your butter/spread. In many ways it will be harder for you as a silent coeliac, as you won't get immediate symptoms if you do encounter cross contamination.

Separate margarine/ butter, separate toaster is vital. Separate ham/ marmalade. Watch soy sauce - buy the Tamari version- it’s Japanese and gluten free. Watch out for gluten in stock cubes.

It’s tricky - but you get used to it. I find dining in people’s houses worse than dining in restaurants.

I find Nairn’s oatcakes are handy if you’re out for the day - can be used with a salad or cheese to make an ok meal. Better than a sore stomach, anyway.

It could be worse, my friends son has a hazelnut allergy. They’re in a darn sight more foods than you’d expect - and it’s been life threatening for him. That is scary.

Definitely get used to carrying a pack of gluten free oatcakes (must be gluten free oats; oats don't contain gluten, but there is a strong cross contamination risk) to construct an emergency meal.

Indian food is great for coeliacs; I hope you're not too keen on Chinese, though...

Oh, and be wary of buffets, or any kind of communal eating (e.g. bowls of crisps and nuts at parties). People will get crumbs on stuff...

Our 'gf' toaster cost under a fiver from Tesco, by the way. I don't know how much toaster bags cost - but I suspect over nine years we've probably chosen the better value option!

I just use the grill on my oven for my toast.

I second Indian food being great, though I really miss nann bread. Sushi is also great if you use gluten free soy sauce.

I also carry around a pack of gluten free oat cakes in case of emergency. I had to eat them begrudgingly in a fish and chip shop which didn't use a separate fryer for their chips, while my family had fish supper.

It does suck but I promise you it gets easier. I think my taste buds have changed after not eating gluten for a while as things that were awful at the beginning now seem to taste better. I like gf cornflakes and the gf version of weetabix. The wheat free bakery have some lovely cakes, especially the cherry almond one! I found that I can make pretty yummy pancakes with doves farm gf flour. Sainsbury's own brand gf pizza is lush. Gf pasta is tricky as it's very stodgy, I rinse it part way through cooking and replace the water, takes a little longer but not as gross, and I avoid the pasta spirals as I find them the worst for it. I use the grill for toast on a tray and have separate butter.