Just been diagnosed with celiac disease today, mid forties in shock- AIBU

[boredwfh]

I went to the doctors as felt I was menopausal, nearly 44, fatigue, insomnia, anxiety I didn’t have before, bit of brain fog, crawling sensation up my thigh.
Had a full panel of bloods work, tested for everything it seemed. Anyway today I got a call to tell me my bloods were all came fine, except for Celiac disease, my markers were so high there no doubt I have it but a formal diagnosis is done via a biopsy. Until the biopsy I must eat gluten otherwise I could get a false negative. I’m looking up what I need to do to go GF when I get the biopsy results back & it’s a massive lifestyle change. 44yrs of eating whatever I wanted, now I’m facing a future of complete GF diet. no breads, pasta, cakes, pizza. Even my porridge oats might not be gluten free.
I know there alternatives but the thought of this is depressing me!
AIBU to feel this way?

How did other celiacs feel after finding out and how did you implement the changes required? I cook from scratch but we are a family of 5, how do I teach them about cross contamination?! I’m the cook in the family so have control over our evening meals going forward but just tonight we had pasta, the sauce was thicken up with flour. (Gousto box just delivered this morning) I use flour in a lot of dishes. I have eggs on toast every morning, I’m reading I may need my own toaster & airfyer to avoid cross contamination

please give me good tips and alternatives of how I navigate gluten free life?
for anyone not in the know, it’s not just a gluten intolerance, it’s a life long chronic autoimmune disease which can only be treated with a complete GF free diet which if not followed gives increased risks of cancer, other autoimmune diseases developing, osteoporosis and neurological problems etc!

I've been gf for nearly 30 years now and though on an every day basis it's fine, I am not going to pretend that it doesn't suck massively at times. But I was so ill before I was diagnosed, and if I get glutened that the trade off is worth it.
You've had loads of good advice, but I would say you have to read every label, every time when you buy things - some become not GF, some become GF (Sarsons malt vinegar is now GF for instance). Join FB groups for GF in your area as you find hidden gems, like recently someone posted that a garden centre close to me has a big gf menu with a great gf fried breakfast. I'd have never gone in there otherwise. You'll also find a chippy that does GF (often only Friday and Saturday nights when they use a second fryer which they only cook chips in apart from the gf, or once a month when they do clean oil and a deep clean) through the groups.
Allow yourself to grieve though. So much of our social lives rotate around food and suddenly you can't just say yes to everything or just accept a proffered sweet.

My DH was 41 when diagnosed
He was Mr beer and sandwiches before that.
He's now largely lacto free as well now as too much dairy effects him.
It's the cost of things that gets us the bread is tiny and ££££
We've now got our go to takeaways, restaurants, pubs we know serve gf beer etc
Days out and holidays take a bit more planning.
It's an adjustment op no doubt about it
Good luck

Oh and if it’s not been mentioned, the ‘Find me GF’ app is good to find safe places to eat, especially when you’re somewhere new that you’re unfamiliar with.

Lots of really good advice here. There’s a Facebook group called Coeliacs Eat Abroad which is great if you’re someone who likes your holidays. It’s eye opening how much countries differ - Spain is amazing for GF, France is dire.

DP is celiac, I’m not but when we’re
together we just have the same to make it easier and lessen cross contamination.
it will be a shock at first and shopping will
Take a bit longer checking labels. DP mostly cooks from scratch rather than replying on processed/ready meals.
there are some damn good alternatives
warburtons breads are pretty good especially the pitta breads…he uses them as a naan with a curry just pan fries them to char them off.
rumo pasta is a good alternative to the gluten containing ones and the supermarket own lasagne sheets are actually better than the gluten ones
supermarkets are getting better with their free from ranges and there apps for your phone to help when your shopping.
be careful with things like stock cubes, seasonings and crisps, gluten is in some of the most random products.

when I first found out DP was celiac I thought it would
be extremely restrictive but I was actually very pleasantly surprised.
Hopefully when you have your full diagnosis and can cut out the gluten you feel much better and back to feeling yourself.

In some areas you can get gf bread on prescription if a confirmed coeliac. It's so expensive. Getting the bread funded by nhs makes up slightly for having to pay so much more for many things.

Hey! Exact same thing happened to me last year. I was quite concerned about the level of upheaval it would entail, but actually it’s really been ok. I’ve got around the toaster issue by, tbh, not having toast (!) and I tend to butter rice or corn cakes on a plate rather than the shared bread board, but I don’t have my own area of the kitchen. My best tip is to buy some hot pink (or colour of your choice ) stickers - I bought a job lot from Amazon and stick them on “my” butter/jam/whatever; these are the extent of my cross contamination precautions, and they seem to have done the job. Specialist said soap and hot water get rid of gluten, so I don’t have my own utensils (though take care not to stir your pasta with the spoon you’ve used to stir the kids’ pasta!)

In terms of food, I eat a couple of GF things (pasta sometimes; GF cous cous and gnocchi often) but otherwise tend to just eat stuff that’s naturally GF (rice!).

Restaurants etc are generally brilliant; just flag with waiters.

And mainly: I don’t have permanent stomach cramps any more! It’s really joyful. Hadn’t realised what a burden it was; I’d got used to it I think. The odd time I’ve accidentally eaten gluten (chips have caught me out more than once!) I’ve reeeeeeally noticed!

Look at the Doves farm gluten free flours. It’s possible to use them - especially the self raising one - as direct substitutions eg for cakes. You cannot tell the difference at all.

It’s random things that I really miss - smarties and yet I can eat M&Ms but they not as tasty sadly. Doritos I can’t eat but I can eat plain salted nacho chips ones from M&S, corn tacos I’m ok with and I could get corn wraps but then they started putting wheat flour in them. So you do need to check labels & I still get caught out occasionally. My favourite quick “bread”, is GF flour 100g mixed with plain Greek yogurt 55g add salt to taste mix then roll out lightly like a flat bread, lift with spatula and lightly fry few mins each side it’s quick & easy naan type “bread”.

We are in Wales and can get gluten free products on prescription. It was explained to us by the dietician. We also have free prescriptions. I have not put in a prescription request because you get 4 weeks worth in one go, and I don't have space to freeze that much bread. My understanding is that it is also quite expensive to administer. They are rolling out the option to instead have a credit on a preloaded card, that can only be used on gluten free items. It is around £14 per month and loaded three months at a time. You need to put the items through in a separate transaction so that the value on the card is only used for gluten free items. It gives more flexibility on what you can use it towards ( I like a bread and cereal from M&S that wouldn't be covered on prescription). It also costs less for the nhs to administer. The value on the card is not as much as the cost of the same amount of items that you can get on prescription, but instead is intended to cover the extra cost between a normal product and a gluten free product. I will look into applying for that when it is rolled out to our area of Wales.

Depending on where you live, if you have active Olio volunteers near you then that can be a good way of trialling some gluten free items (particularly breads and pies/sausage rolls) for free to see if they are worth paying for.

Don't become disheartened if you try some awful gluten free alternatives. Some gluten free food out there I have no idea how it got through testing to get onto supermarket shelves!! But there are some very good gluten free options, so it can need some experimenting with alternatives, which can be painful as it is expensive but don't lose heart! My kids now love Nairn's gluten free cheese bakes more than mini cheddars.

Like others have said, naturally gluten free is one of the best ways to go most of the time but gluten free options for meals are getting pretty good.

And be careful of places with gluten free options that aren't coeliac safe. A kids birthday had one gluten free option when organising, which was gluten free pizza. Sounded good initially. On asking questions about the chips and how they were cooked, we then found out that their gluten free pizza may contain gluten, so the truly gluten free option was the jacket potato! (Which wasn't a stated option when making the booking)

In case it helps my DH is ceoliac and we still find it worth using gusto. They highlight the meals that are GF but often the ones that are not GF just have one problem ingredient. You can check the recipe ingredient list, often its just the sachet of soy sauce or panto breadcrumbs so I jjst substitute those at home. We have a bottle of GF soy and breadcrumbs can be bought on Amazon or make your own from GF bread. I then pass on ingredients we can't use to family etc so little waste. Obviously I wouldn't order a meal where the main ingredient was ready made pastry for example as not cost effective but if its just a sachet or something that makes the recipe not suitable then it's easily substituted with minimal cost vs the convenience of being able to still use gusto. For example we still order the burger meals but DH has a gf bun from the freezer and we use the spare gluten containing one another time.

Our favourite fish and chip shop has a separate fryer for GF 😋. It's pretty popular, unsurprisingly.

M&S gluten free fishfingers in the freezer and salmon or cod fish cakes in the Freefrom’ section are all really nice - I think the fish fingers are better than non gluten free ones!!

That sounds rather complicated - wouldn't it be easier and cheaper to just give everyone diagnosed with coeliac disease 14 quid a month? My country used to have a 20 euro a month benefit that would could apply for if you were diagnosed, covered my bread costs at least (and still has a 150ish euro a month disability benefit for children with coeliac disease which is a godsend for DD, going to miss it next year when she turns 16 and is no longer eligible)

i was diagnosed last month with coeliac but went gluten free as soon as I had my bloods done in September (not what they recommend). I felt so terrible and we were prepping for ivf so couldn’t really wait for the biopsy. I had also found out in my area the wait for a gastro appointment is around 1 year so might be worth checking how long you may be waiting. As it all turned out it was fine to go gluten free as the advice and guidance referral sent by GP to gastro came back with - no need for biopsies and diagnosed coeliac on basis of blood tests. That was in jan.
I would recommend Italy for holidays - excellent at gf and had no trouble finding multiple food choices of excellent standard everywhere.

I wouldn’t say my bowel problems were bad. I don’t think they’ve ever been great but not enough to make me think I had celiac disease. It’s been a complete surprise to me. Fatigue wise, I’m done in by mid afternoon, heavy tired eyes, the crawling sensation on my leg was the symptom alongside others that tipped me over into going to the drs for first time in over 10yrs thinking I was perimenopausal.

I agree with that - I’m gluten sensitive but not coeliac and the symptoms for me were all neurological, that crawling sensation, sore burning eyes, weird spacey feeling, back of head headaches, pins and needles an awful lot - mine came on straight after Covid - initially i put it down as long covid/post viral but a neurologist suggested I went gluten free and that really really helped - 3 and a half years on and I know immediately if I’ve had ‘too much’ gluten - the symptoms come back - I can cope with small amounts if I’m prepared to have sore eyes, pins and needles etc . Not everyone has gut issues apparently - although a bigger percentage do than neuro issues.

The problem with that is that cash strapped families may use it on their general shop, rather than on gf products for the child it's intended for. I do like the idea in Wales though of a card with money for gf items. We end up with way more bread than we need, and spending lots on other gf items.

OP if there is no doubt you have it, then why have a biopsy? My GP says they don’t bother with them anymore, I have never had one and tests for coeliac come up negative for me as I can’t eat gluten, but I have other things that can go along with coeliac disease and I react so badly to gluten that it’s pretty obvious.
Re the diagnosis, yes it’s a pain not being able to eat gluten, but it’s much easier than it used to be. The hardest thing for me is cross contamination, that’s the thing that causes me the most stress as all my reactions since giving up gluten have been down to this. There is still a lack of knowledge in cafes and restaurants. I been in a cafe where they said “yes, we have gluten free cake”, then watched them use the same tongs just used for a normal cake. I also hate feeling like the annoying one when out socially. I sometimes have to say no to things I would love to go to, because the food is a buffet, or there are communal things like dips.
At home it’s really straightforward, just remember that you need a separate toaster, and anything like butter or jam has to be put into plates not dug into with a toast knife.

My mum is coeliac and she finds that McDonalds is a good option if you're away from home and want something quick and easy. Most of them have a separate fryer for their chips and the burgers are GF - you just have to ask for one without the bun.

I’ve been put on an exclusion diet that means no more gluten, dairy, soy or egg. It’s absolutely overwhelming, both practically and mentally. The hardest part has been the lack of convenience. If I need to pick up a quick lunch when I’m out, there’s very limited options. You really do have to become a good planner! For eating out, places like Nandos seem to take allergies seriously and even I can find a meal to eat there with my restrictions.

I’ve found online shopping has been a lifesaver, as you can take your time and look at the ingredients properly. But also taking time to go to supermarkets and browse their Free From section has been great for getting ideas to replace things I liked before (eg snacks to eat on the go, different flavours of oats etc).

I’ve found gluten free pasta shapes fall apart a bit easier, but other than that it tastes exactly the same. Rice is gluten free. Since you can still eat egg, there are lots of bread options available.

Wagamama and Leon are both good options for eating out. Pret hasn't much but their chicken laksa soup is nice and the glass noodles in it are made of bean.

Oh and Trek bars are widely available. I eat so many!

Nando’s good too as is Bills, lounge group and pizza express