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 was diagnosed at 37, at the time the only place to buy anything gluten free was in health food shops or I got a prescription and collected bread and pasta from the pharmacy. Once you get over the shock you will realise that so many supermarkets have huge ranges and that actually many foods are naturally gluten free - it will take a bit of getting used to. After the biopsy when you go gluten free in a matter of weeks you will feel better than you ever have - at the moment you don’t even realise how ill you feel because it’s been such a slow process. Going gluten free will literally change your life for the better and then that piece of birthday cake will not be worth it so it doesn’t feel like you’re depriving yourself, it feels like you’re helping yourself to be well and healthy. Good luck.

Its more and more common.
My dh had a blood test and it was borderline we assumed it was wrong but a biopsy confirmed it

Its an adjustment but youll get there 💐

My dh was initially upbeat then went into vqlley of despair and is now coming out of it.

There are great GF restaurants the fake bread isnt really pretty good.
It is an adjusent though.

Oh its a big shock, isn't it? I was diagnosed on my 21st birthday, celebrated with a final pint of guiness.

Definitely separate toaster and separate butter. Make home as GF as possible - all our dinners are GF, OH and DS just have normal bread and biscuits and cereal/porridge, otherwise they eat the same as me and DD (she also has coeliac disease, diagnosed at 4). Cross contamination is a risk so designate one area in the kitchen for gluten food prep (making sandwiches etc.) and have the rest safe for gluten free.

Schar long life white loaf is the closest thing to normal sandwich bread I've found but its very processed so probably terrible for you.

There’s lots and lots of GF options now but mostly I choose to eat real whole foods instead. I feel so much better in my health and lost weight it’s been great for me. I cook then same just when my kids have pasta I’ll eat potatoes or rice instead. I prefer to eat more veg and protein and less carbs anyway and most gluten is in carbs. GF flour is more expensive but easily available in Tesco etc. highly recommend Becky Excell face book group and receipe books. Our local chip shop does GF once a week. I do have to plan ahead if out for work etc and mostly take my own packed lunch, as easier.

What was the actual blood test you had OP, I was sent for a long list of bloods when I asked for HRT, all the usual symptoms that you identify as well, I dont remember anything for that.

My youngest DC is GF. I use red / green stickers to label items as not OK / OK. This is particularly important for things like butter / marge (where you end up with 2 on the go). I've found it also very helpful with all other jars as a reminder for anyone eating gluten not to double dip.
For baking, Loopy Whisk's (Katerina Cermelj) 'Elements of Baking' has adaptation rules for making normal cake recipes etc GF. It's been brilliant because it means I can still bake all the family favourite recipes.
For eating out, I find the free 'Find me GF' app great at giving you recommendations on where it is worth trying eating. I paid for the Coeliac society one for the first year, but it didn't have as many restaurants in (and I didn't use the scanner as I found it faster to just read the labels).

OP, if you go to Spain (and its islands) or Portugal on holiday, you can order gluten free McDonalds. Spain is a good holiday choice going forward as food labelling is so good, particularly in the Mercadona supermarkets. The Chairman's daughter is a coeliac.

You'll probably want self catering accommodation options in future too. A hotel's usually doable for an overnight, we find, but no longer. Your choice, you'll find your way., just take it a day at a time. x

Good luck OP. I was diagnosed 15 years ago, and I think it's a lot better understood now and there are far more options available in supermarkets and cafés/restaurants (although I still get the odd "well, that's vegan" response when asking in a cafe - that's great, but that's not the same thing 🙄!). There are plenty of cook books which will hopefully give you ideas so that you can still cook for everyone together and not have to worry about separate meals for you and them. Although supermarket GF breads have improved a lot, you might want to invest in a bread maker, most of which should come with GF programme and you can find good GF bread recipes. In terms of cross contamination, wiping down surfaces before you use them and using separate plates/cutlery while preparing and eating should be OK - the dishwasher/washing up will get rid of contaminants, I believe.

Main thing as others have said is that you will hopefully start to feel better!

Some fish and chips shops do gf days.

Mcdonalds chips are gf. My husband (not formally diagnosed as off gluten for many years but highly likely) and daughter (formally diagnosed as being at the highest possible reading on the blood test)are coeliac, we still go to Mcdonalds. We take gf rolls and ask for the burgers to be freshly made without the burger, no onion rings etc. My husband has an instant (within 1 hour) reaction to even a may contain for gluten, so we know if there has been any cross contamination, and has never reacted in Mcdonalds.

Nandos is another good restaurant option, and pizza express. Many other restaurant have a gf menu.

My oldest daughter and I also had to be tested when my youngest came back positive. I suggest your children, your siblings and your parents should also be tested.

We were told that even gf oats are not fully OK for coelics, as they contain and protein which causes the same auto immune reaction.

It was a bit of a shock for us when my then 5 year old was diagnosed, but she has taken to it so easily and a year later she is doing so well. The changes you will feel hen you come off gluten will hopefully make it feel worthwhile.

Gousto have very little gluten free options unfortunately

overall it’ll take you a while to get used to it, but you’ll get there!

Just to add and agree with PP that separate toasters would be advisable if you're all toasting a lot of bread!

I'm late 40s and had to stop eating gluten a couple of years ago (under celiac consultant but not yet clear whether celiac or not - either way I can't eat gluten). I also started off feeling overwhelmed and tearful, so completely understand. However I felt so much better (like 10 years younger) once I stopped eating gluten that it made it much easier to accept. My symptoms were similar to yours in that they were more immune system that gut related. My approach is to base meals more around rice and potatoes, as lots of replacement products are quite processed, but on the other hand the replacement products are great to have in, so you can join in with what others are eating. Schar products are really good and I love their wholesome white loaf. I find Sainsbury's gluten free pasta the best. I now prefer gluten free cake as it's lighter. Becky Excell has great recipes. Best of luck and please be assured it's not as bad as it might now seem.

I'm sorry to hear this, it's a hard thing to come to terms with, but you will become accustomed to it quickly and you should see a big improvement in your health which will make the diet change worthwhile.
My daughter was diagnosed a year ago and whilst I was desperately sad for her, the transformation since going gluten-free has been incredible and made the diet change worthwhile.
Lots of great advice already given here. My additions are:

• cupboard audit: take out any gluten containing foods so your kitchen is g-f and no one accidentally uses the gluten-containing stock cube/soy sauce etc. Instead, we now have just one drawer of gluten containing foods for my other daughter.
• separate toaster is helpful
• buy toaster bags to take away on holidays
• warburtons tiger loaf is decent
• Schar do loads of great gf products
• cornflour is your new best friend
• gf yorkshires are really good and you'd be hard pressed to tell the difference between them and non gf.
• Italian chain restaurants seem to have good gf options and food safety processes in place
• Becky Excell deserves a damehood
• gf pasta is fine!

I do the red and green stickers too! 😁

A big change but you got this and will feel so much better in few months.
Coeliac uk is great source.
Becky excell.
My dd now mid 20s follows various online celiacs / coeliacs. Look for local gf places. Some chains are good eg bills pizza express cozy clubs etc
Make your kitchen largely gf buy new toaster gf zone and have a gluten zone for gluten bread and gluten toaster.
We have separate gf and gluten air fryers too.
i Only buy gf flour.

It is such a shock, but it will be OK. You will slip up loads in the first year, but you will begin to heal and feel much better.

Use the next six weeks before endoscopy to reflect, check ingredients on what you eat and clean your cupboards out. And also to really really enjoy whatever you think you will miss most. I would suggest Croissants as the texture just isn’t really attainable without gluten and sourdough toast.

Facebook have some great forums, instagram is useful too.

You’ll likely get a few dietician appointments who will help you navigate and give you confidence, and you will learn to say to the words in restaurants. ‘I need to be strictly gluten free’ .

There are so many more options out there these days for foods. And eventually you don’t even see glutenny things as food, as you know how ill it will make you. So they don’t faze you.

Similarly to other posters, we have only GF flour in the house, and only GF pasta as it’s too easy to make mistakes otherwise.
Sauces and cereals are labelled.
Spoons only for jams etc, or your own ones labelled.
My own butter dish
A gluten free tray in the oven. Top shelf. Not that everything has to be cooked there, but definitely no glutenny pizzas direct on that shelf.
Family have to fess up if they have glutened something. Don’t get angry with them if they do, they will muck up as well, be over grateful to just make sure they tell you so you don’t eat the jam or whatever they have mucked up.

I use toaster bags in a 4 slice toaster in my own separate 2 slice area. So the area is minimised of crumbs but obviously still way to close to gluten for complete safety, but it’s in toaster bags anyway. A GF toaster might just be easier.

Keep toaster bags in a pocket in your luggage. I was always forgetting them, but if they don’t leave the luggage you generally use then they are always there!

It’s a TTG blood test. I don’t know if it’s standard or not. It took a long time to get diagnosed by my doctors even though I was riddled with mouth ulcers, fatigue and so anaemic I could barely standup some mornings.

I happened to have a locum who had just been on a conference and had been discussing Coeliac disease, so it was just luck.

So be specific and ask your doctor for the TTG test fro Coeliac Disease if you have concerns.

I found it easier initially to eat naturally GF foods rather than looking for Free From things which are normally UPF and dont always taste great. Think about poke bowls, protein heavy salads, baked potatoes, falafel bowls. You'll feel loads better. Good luck!

DH has to be gluten free. He was formally tested for Cealiacs based on his symptoms and mount of times he landed in hospital from eating said stuff. HE is just allergic. Horribly so.
You can buy GF oats, there are a few GF bakeries though these are expensive, some F&C shops do offer gluten free nights following a deep clean and offer a seperate fryer for GF only. The Lounge Chain offers a GF menu that is not outrageously expensive. At first going out to eat anywhere was scary but the Cealiacs Sanctuary app gives detailed lists and a few places have proper Cealiac status as they have seperate kitchens or are totally GF establishments seriously minimising cross contamination. I can recommend Jusrolls GF flakey pastry but it does need to handled gently, makes fab sossy rolls and pie toppers. DH rates M&S with out wheat range and Italian brands of GF pasta. they must be good as they passed the blind taste test with my DS who has ASD and is uber picky. WHite Rabbit make some good GF pizza and Pieminister GF pies whilst expensive are worth eating. It’s worth learning to bake as it’s cheaper than ready made and will have less sugar. As others have said it does get easier and DH took to the new diet as he feels so much better, no hospital stays since and is far more healthy. DK publishing have a simple GF cook book that is informative and encouraging for those who face switching to GF.

Hope all goes well as you get used to the new normal in time.

My daughter was diagnosed at 8 and she’s 24 now so I’ve had years to get used to it but it was very overwhelming - I have the same symptoms as her when eating gluten, but my tests came back negative. I do mostly eat gluten free.

GF products are now a million times better and more available than they were back then. Some brands are a lot better than others.

DD really rates the Schar products for bread, pain au chocolate, pizza bases, etc. although I’ve found Tesco do a lot of GF stuff in their normal ranges - sausages, burgers, etc are all GF now anyway, McCain oven chips are GF (the plain ones, not the home style ones). GF pasta and spaghetti is fine from most places.

I bought a bread maker and leaned to make gf bread, pizza dough, etc, learned to make gf cakes. Lots of trial and error and utter duffs as it’s a lot different to normal bread and cakes but you soon figure it out.

She’s moved out with her boyfriend now but we had a separate toaster, separate utensils, baking trays, etc. A drawer of the air fryer was exclusive for gf products. A whole drawer of the freezer and the top shelf of the fridge plus a cupboard in the kitchen was for gf only.

A lot more restaurants now offer GF, our fish and chip shop does GF Fridays, the GF pizza from Pizza Hut is good.

It is a lifestyle change really. We mostly eat GF now but stuff that is naturally gf rather than buying alternatives.

It is bollocks but you’ll soon get used to it. My advice is check everything!!! I used to regularly gluten myself from assuming something wouldn’t contain gluten (Vimto, I’m looking at you). Never make assumptions. The longer you are off gluten, the worse you feel if you do become glutened.

Focus on the lovely things that you’re still allowed to eat, rather than thinking about the things you can no longer eat. You’ll just end up depressed.

I don’t really bother with gluten free alternatives except for pasta. I’ll eat gf bread now and then but I’m not a fan, I only have it if I’ve got a terrible sandwich craving. I’ll put the rest in the freezer but it just falls to pieces when it’s defrosted. Same with cakes - it’s mostly awful (and very expensive!) so you will have to adapt meals and find new snacks.

I was diagnosed 5 years ago and it was hard. Two things have made it much easier:

1. Becky Excell books - brilliant for everyday meal recipes and cakes
2. Promise bread...I have tried so many others but this is simply the best. It's expensive so I freeze it and defrost slices as needed

Focus on the foods you can eat - meat, fish, poultry, dairy, eggs, fruit, vegetables, nuts, seeds, legumes & pulses.

Freee foods online has an excellent range of GF baking products, plus recipes. Nut flours are also GF, and can be used successfully in baking (use the right recipes).

You should be able to purchase GF porridge oats in a health food shop if your supermarket doesn't have any.

GF cornflakes, when crushed, make an excellent coating to replace breadcrumbs.

Thanks, I dont recall that test will check on my app in a min. However hearing what you were suffering, I dont have those symptoms and the bloods all came back right for all the usual deficiencies so Im clearly absorbing foods well

Yes this. The healthier, happier you is the reward for what eventually, you won't miss.

I thought I'd miss lovely warm bread, pasta, biscuits etc etc and I simply don't. At all. I was a warm baguette addict which probably caused my problems!

15 years on I don't buy any of the gluten free alternatives apart from cornflakes and they're a bit annoyingly expensive but apart from that and having to check menus when I go out to eat, life is just better without the symptoms. Btw restaurants are generally brilliant about gluten/coeliac now compared with 15 years ago!