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!

Of course yanbu.

I have coeliac. It is overwhelming at first. You have to get into the habit of checking labels. To start with I’d recommend going into some local supermarkets and seeing what their gf selection is like. The Sainsbury’s near me has an excellent free from section. To begin with you may depend on the free from alternatives. Find some alternatives you like or at least are edible. What are your favourite dishes, stick with what you know and like as far as possible and use the gluten free alternatives. I make tuna pasta etc for my kids and they don’t know the difference supposedly. I made a gf cake for my son’s birthday party yesterday which got the approval of several tween boys. Otherwise I eat a lot of chicken, potatoes, rice, yogurt, gluten free oats, gluten free crackers, salads, soup. I probably could branch out a lot more.

It gets easier I promise. I’ve been diagnosed for 17 years now. It is second nature to me.

My husband got diagnosed at 33. He is so so so much better now, symptoms have completely gone away. This is the bright side for you. You’ll feel so much better. It is a huge shock though. Be really kind and patient with yourself. There are a lot of good alternatives around now but like you say it’s a huge shift

I was diagnosed in my 40’s too and one of my children has it. I felt so much better off gluten that it was easy to stick to. I did make some mistakes early on, forgot to check labels. You also can’t have barley or malt vinegar anymore as well as gluten. It is expensive but there are loads of gf bloggers and recipes out there. Loopy whisk on Instagram has books on how to make decent gf bread and pizza. Becky Excell is also good and there’s others too.

Barilla and rummo gf pasta is pretty good. Schar do have some gf options. They have some frozen bread rolls you bake and they’re really good.

Be kind to yourself you might make some mistakes it all takes time, but I felt so much better. Everything will take research like eating out and informing friends/colleagues to include your requirements. But there’s lots more options now. I think gf cakes taste as good as the gluten cake options and I make my own. The only difference is bread and pasta is different but there’s caputo flour which is very good but expensive. I make all our cakes gf and my daughters friends love them. My husband and other children have normal bread and are careful about cross contamination. We can use multiple cutlery but no double dipping. Do follow other gf people on social media, it makes you feel less alone. There’s also a some gf or free from food festivals this year that would be good for you to attend and see what’s out there. Good luck!

I was diagnosed in my late thirties. It took a while to adjust, but I eat better now than before I was diagnosed.
I thoroughly recommend Becky Excell's cook books and blogs.
In our house, shared meals are GF now, as I'm the cook (other household members still eat normal bread, biscuits etc but I don't have gluten containing flour in the house). I use lots of eggs and rice, some GF pasta, and fresh gnocchi (check the label, but some supermarket brands are GF).
Henderson's relish is GF and there is GF soy sauce and quite a lot of GF stock. GF flour works absolutely fine in sauces (baking often requires a bit of fine tuning, hence the cookbook recommendations!)
You will get good at reading and understanding packets fairly quickly - you're looking out for BROW - barley, rye, oats and wheat (some products contain de-glutenised wheat, which is ok) or "may contain gluten". Oats are naturally GF, but very high risk for cross contamination due to the way they are grown and processed - gluten free oats are available.
It's a huge amount to get to grips with at first, but does get easier.
Eating out requires some research and food on the go can be a challenge.

My son was diagnosed 2 years ago so it’s pretty fresh for us still but more than manageable. Feel free to message me and I’ll help

Not quite the same but my granddaughter was diagnosed aged 5 and it really was very overwhelming at first.
Cross contamination is a huge problem whether eating at home or in cafes ,restaurants etc. My Granddaughter home is now GF for everyone. We have split our kitchen in half to have GF prep,cooking area ,seperate cupboards,utensils,toaster.
Lots of GF food in Free from aisles in Supermarkets but you will have to work out which foods are ok . Warburtons GFbread is expensive and the best bread we have found. White rabbit pizzas from Sainsburys are ok ,pizza express is really good for GF food. We always check at cafes etc how careful the GF food has been cooked / stored etc to prevent cross contamination.
I baked birthday cake for her a few months ago and it was really good . Doves GF flour is fantastic.
OP it will all feel so overwhelming at first but you will crack it eventually and feel so much better.X

I live with 3 coeliacs although I’m not. I would say 95% of my own meals are gluten free at home now, I prefer them and I feel better. You need to focus on and celebrate what you can eat and there’s so much! Whole foods and healthy foods. All veg, fruit, rice, meats, herbs spices etc. So much out there for gf now. Look at Becky Excell her insta and cookery books are great.
Eating out, many places cater for gluten free with Pho having a totally gf menu. Cosy Club also excellent and Indian food great for gf, Pizza Pilgrims do the best gf pizza!! The favourite bread, bagels my lot eat is from a brand called Promise. My husband was diagnosed 25 years ago snd the options were ver poor. So much out there now. You just need to find the things you like although it can be expensive. I always do some research and planning before I go out and look at gluten free menus and gluten free London guides etc. Just one thing to remember just because it’s gluten free doesn’t mean you have to eat it, my husband used to eat lots of gf cakes and biscuits because they were gf. You will be fine and feel so much better, good luck! X

Did you have any digestion problems ? Bowel issues ? How bad was the fatigue and other symptoms?
I only add ask because I’m gluten intolerant but not biopsy tested for celiac yet

It must be really difficult to be diagnosed as an adult, but as others have said hopefully it will leave you feeling a lot better once you can stop eating gluten. I second the Loopy whisk website recommendation. Also, agree Schar so a lot of good substitutes, including frozen croissants and pain au chocolat, etc.
Lots of restaurants do gluten free options, but less do coeliac safe - Franco Manca for instance I was disappointed to be told that their gluten free pizzas are not coeliac safe as they just cook them in the oven with the gluten pizzas. Honest burger do have coeliac safe rolls and fries, etc, though as do a fair few other places. For holidays, Italy and Spain are particularly good as they are very coeliac aware as it’s more common there so there are gluten free restaurants and, even in non gluten free places, lots of options that are coeliac safe. It will be a lot to take in and a lot to get used to, but you will get there. If there are any particular recipes you want feel free to post or message me - I cook a lot from scratch as my youngest is coeliac and over the last 9 years have got recipes for most things - as I’m sure have others on here. Good luck!
ps I’m not sure if anyone has already mentioned, but soy sauce is also out, but tamari is a gluten free version

@boredwfh I have Coeliac disease. Had it for over 20 years. When I was first diagnosed the food options were limited and not all that great. Now the options are far greater.

For Bread look at Warburtons. They do all sorts of GF bread. Their tiger loaf is great.
pasta is basically readily available in most supermarkets.
You can get GF oats easily in supermarkets too.

Youll need your own toaster yes and separate butter / spread too. Likewise anything you dip a knife or spoon into, certainly for the short term whilst your household gets used to cross contamination.

Look online…..there is so much available. coeliac UK is good to join too. They have lots of info and guides on where to eat, recipes etc and a catalog of GF foods from all makes.

Finally, don’t panic. I promise you it will become second nature. You’ll get to the point of being able to look at something and almost know if it’s GF or not. It seems daunting but I promise it’s not and if you do most of the cooking you don’t have to trust others to make sure nothing has been contaminated.

It is overwhelming at first, but it’s worth it to
feel better. I am coeliac and 2 of my 3 children are. We are an almost GF house. Just wraps for my one non GF child and beer for DH. Though a lot of that is GF too. We eat a lot of home made food. GF pasta is good. Gf flour substitutes into sauces well. In fact I think it makes a better bechemal sauce. Puddings like apple crumble and rice pudding and merengues are great. As are brownies. Though you quickly get sick of them as they are the ubiquitous gf offering!

You feel so much better it’s worth the bit of work at first.

Your newly tweaked diet is way healthier too, so other people might get keen on joining you.

My younger sister has Coliacs. Don’t despair, there are plenty of things you can eat. She bakes regularly and uses Becky Excell recipes. The GF Yorkshire puddings are better than the original. We had some gorgeous chocolate teacakes that she made yesterday. You’ll be fine, once you get over the shock.

Incidently, my sister had very high blood results so they didn’t bother with a biopsy. It immediately became clear she had coliacs, when she stopped eating gluten.

This really isn’t true. A gluten free diet is only healthier for people who have coliacs.

It is apparently hugely on the rise as my GP told me, especially in over 50s - one theory is the fact of so much more genetically modified wheat and the reason Italians do it really well is it’s so common - does make you wonder if itsall that pasta/pizza - I’m actually not coeliac after testing, but i do definitely have some kind of intolerance if I eat too much gluten, I get really sore eyes, and feel like I’ve eaten a pillow, so I keep it down - I actually did lisezweight because I stopped using sandwiches, wraps etc as a quick ‘go to’ - ate more soup, more protein and GF crackers, more things like Greek yoghurt with a bit of gluten free muesli and prawn salads , - in my case it changed my eating habits for the better

@boredwfh things will be very overwhelming at the moment, but they do get easier and while it can be frustrating sometimes there are actually a lot of foods that are naturally gluten free and many good gluten free alternative. Plus, once you go gluten free after your biopsy you’ll start to feel so much better.

Cooking at home is easy, eating out can require a little more planning, but is totally doable. There are a number of apps that can help you find places to eat.

We’re a family with 3 children and only one coeliac, so we still have gluten in the house and manage to avoid cross contamination just fine. We have one bench in the kitchen we don’t put things with gluten on and another bench for gluten-containing food prep. We have separate butters as that’s used a lot, but for other spreads we just have a rule that you don’t ever put a knife or spoon in them that has touched gluten, so fine to get jam out with a clean knife and spread it on the gluten toast, just don’t stick it back in the jar.

We use all the same kitchen stuff except for the toaster. We have one toaster thats only for gluten free. Air fryers are ok if you clean them with hot soapy water between gluten and gluten-free foods. The oven is also fine, just put gluten-free foods on the top rack when cooking foods with gluten at the same time.

We have gluten and gluten-free breakfasts and lunches, but dinners tend to be completely gluten free - curries, spag bol, stir fry, pasta, wraps etc. When we cook pasta we just do gluten free for everyone because it’s easier. We also only have gluten-free flour in the house as that’s one of the highest risk items for cross contamination. Oats don’t contain gluten, but can be contaminated with wheat or similar during processing. A small percentage of coeliacs will also react to uncontaminated oats because they contain a protein similar to gluten. Eggs on gluten free toast is a favourite in this house.

I found the best source of helpful advice and support following diagnosis was the local coeliac facebook group.

I’m not sure what the recommendations are where you are, but where I am they recommend other immediate family members be tested even if they show no symptoms. An appointment with a dietitian can also be really helpful, especially if they can go over reading food labels.

The coeliac in this house eats plenty of bread, burgers, pizza, donuts, cakes, pasta etc.

There are apps available, free one called GF scanner and a coeliac uk one. You just scan the bar code, it makes shopping so much easier. You will be surprised what it actually gf.

Any suggestion your kids should be tested? Friend of mine recently discovered she was symptomless coeliac after her DD was diagnosed. They have switched whole household to gf for convenience.

I was diagnosed last year. Got the letter the day before my 52nd birthday.

It is a lot to take in at first, but you will find out what works for you. What works for one, may not work for another.

I went to the doctor with similar issues to the ones you mentioned. Bloods showed I was anaemic, but raised gluten antibodies. First endoscopy wasn't conclusive but showed a higher risk. They repeated bloods 6 months later and the levels were higher. Repeat endoscopy conflicted celiac.

Not sure if it happens in your area, but I was offered a dietician appointment. It was a group session online for about 10 of us. The dietician went through basic information on being celiac, what to look out for in products that were not OK, how to avoid cross contamination etc. It was useful- some had only been diagnosed a short time before, others a bit longer. People benefited from each other's questions and comments. She said there would be 1-2-1 appointments in time, but the group sessions meant they could get information out to more people quicker.

Places I found useful were celiac society website.

Becky excel on Facebook- i joined her group and have one of her books. She has done a few. She posts information on what is available in different places. Eg Christmas time she did a post/blog on which advent calendars were safe, and which supermarkets they were in. She went through the Christmas product ranges (there are often items not specifically free from that are ok too).

With the diagnosis is was sent an information booklet. In it were cards to request free samples from two firms. I registered on their websites instead. Received one box, but not the other, so I assume it got lost in transit. The firms were juvela and glutafin.

Sometimes it is a case of trying something to see if you like it. Things such as bread and cake can vary a lot in texture.

Personally I like m&s bread the most. I also like warburtons for pitta breads, a lnd a roll that is like a sandwich thin.

Most supermarkets do gluten free cereals and pastas. I tend to buy in sainsburys because it is my nearest supermarket and where I do the weekly shop. My local store also has the dried, freezer and fridge free from in the same aisle. There will be lots of things that are gluten free elsewhere too, but may not be labeled as obviously so you will need to look at the ingredients. In time you will find what products you like in different places.

Things to watch out for that you wouldn't expect are barley and malt, so malt vinegar contains gluten( balsamic, white vinegar are ok) so for things like salt and vinegar crisps it depends on the vinegar.

Things such as barley water squash also contain gluten, but normal squash should be fine.

For restaurants we go to places such as zizzi and harvester. Zizzi do a range of gluten free pizza and pasta. Harvester will give you an app to check on. I think it is the same as the website. Instead of filtering on cereals containing gluten, look at an item you want and the list of specific ingredients.
Dishes like gammon show as containing gluten, but it is only the onion rings, order without those and it is fine. The only thing in the charging chicken is the gravy, so I have it without ( not sure on other sauces - never had them anyway so haven't checked). I had a burger the other night- just without the bun. ( the bit I miss the most are the glcroutons, onion bits and bacon bits in the salad as they are not ok).

If you ever want to order cake, I recommend sponge.co.uk. we were sent some Christmas time. They do a gluten free range ( produced in a separate bakery). You wouldn't know that they were gluten free. We had the apple crumble cake for a birthday and everyone enjoyed it.

I use a separate baking tray, and serving tools to the others. However, that wasn't much of a change for us, because my husband and daughter are both vegetarian, so some of my items were cooked separately anyway.

They do say separate toasters to prevent cross contamination - the other option is toaster bags. I bought some in lakeland. There is also a make of sandwich toaster device you can put in the microwave that seems popular. Haven't tried it yet but might do . I think it was from morphy Richards.

On a positive note, after a short while I noticed I wasn't as bloated as before. I have also found it easier to lose a little weight. About a stone so far, but over 5 months. Not going down fast, but better to be going down than up. Cnsidering my age, and that i also have an underactive thyroid ( diagnosed mid 30s) I will take any weight loss I can!

I wonder if anyone knows, I was diagnosed as coeliac by a blood test but there was no mention of a biopsy.
Is there any chance it could be wrong? I tried a gf lifestyle after my diagnosis but I really don't like the food 🥲 its all ultra progressed
I only went to the Dr's as I had bloating

Blood test very unlikely to be wrong. I was told, formal diagnosis is biopsy, but dr told me some people go gluten free & symptoms improve so much they don’t bother with the biopsy as it’s quite intrusive. Biopsy all shows how much damage has been done to the gut.

Thank you everyone. I suppose fish & chips do. The chip shop are also out! MacDonalds too! Lots to think about but hoping I become healthier as a result!

Some places where we are have separate fryers and offer gluten free fish and chips. I believe there are also countries in Europe have gluten free McDonalds. I really wish they’d offer this worldwide as it’d be really handy when traveling.

My husband and 15 year old daughter are both coeliac. It seems very daunting to start, but hopefully you'll see a huge uplift in health. Gluten free is improving in the UK all the time. I also recommend Becky Exell's books. She has a fairly active Facebook site as well. Where in the UK are you? Lots of chip shops will do a gluten free night when they change their oil, you might get some local recommendations! Yes to separate toaster, butter etc. Best way to teach contamination is to cover it up initially. Happy to answer any questions! And you said you get gousto. We get hello fresh. Loads of perfectly good recipes if you don't mind subbing your own soy sauce, flour and breadcrumbs.

My auntie goes to a chippy near us and it has a gluten free option. They use a completely separate fryer that is never used for gluten so there’s no cross contamination. I suspect she may be lucky though and perhaps the owner has gluten free family etc so understands the importance of it. It’s a big adjustment particularly finding out later in life but I’m sure in time you will find what works for you. Good luck