Just had coeliac diagnosis

[imissbread]

I've just had a diagnosis of coeliac disease which I wasn't expecting and am feeling extremely sorry for myself. I know people have much worse - I could have had much worse! - but I'm mourning all the places that will now be difficult to go and the food I can't eat or even try. I really love food, this is a tough one for me.

How did others cope in the early days? How long before going gluten free did you start to see a difference in your symptoms? My main ones are fatigue, brain fog, bloating, loose stools, so I didn't have anything very dramatic. Since the birth of my DC it's felt like my drive, energy and ability to do anything has drained out of me (my doctor thinks pregnancy/birth triggered the activation of the gene) so it will be nice to feel more vibrant again.

But how did you get your head around being so limited?

Is chocolate ok to eat as long as it doesn't say 'may contain gluten' or is there a set list I should stick to?

Travel, what do you do about going to 'interesting' places where understanding may not be there, or communication difficult? I'm sad for the holidays that won't be the same anymore

And solidarity to all of you who have been doing this for longer than me - this is my second day and I'm already bored of it!

Apologies for this extremely self-indulgent post. I know I'm lucky to have a diagnosis and there are much worse things that could be wrong with me.

Go get all the free tester boxes you can to try everything (look on coeliac U.K.). Sometimes there are big allergy events companies go to and you can try things. We used to have one in the NE and it stopped sadly. look for your local gluten free groups on facebooks and it’ll help you find all your takeaways/restaurants. Morrisons is great, DD likes Sainsbury’s pasta.

DD is coeliac, she has separate spreads and a toaster. I also prepare her food in a particular area I make sure is clean.

You will find lots of coeliacs who ignore ‘May contain’ and eat it anyway. That’s your choice. I would never give DD them and we are super strict.

I think if you aren’t too fussy as an adult you will get on fine. DD had a limited diet so it’s a nightmare.
I don’t know much about alcohol but I’ve known adult coeliacs react to some red wines so might be worth looking into.

Welcome to the coeliac crew!

As PP says, give yourself time to mourn. It does feel like a great loss at first. I've been gluten free for years and I still feel a pang of sadness every time I walk past one of those churro trucks or see a really nice looking cake in a shop window.

But the world is much more accommodating now than it used to be. So many places have gluten free food now and they will say so on their website or menu, so going out to eat or finding somewhere when you're on holiday is much easier than it once was.

I noticed a difference instantly when I cut out the gluten at first. I actually finished my meals instead of getting three mouthfuls in and being too ill to continue.

It gets better! And you get used to it. On the plus side, it makes trips to the supermarket quicker when all your food is in one aisle!

Thank you so much for this, especially for the time line expectation. It will be easier to think of the positives when I no longer feel like a husk of my former self!

Your poor DC! It's a hard thing for a child to navigate. Driving two hours for fish and chips is commendable, I hope it was worth it!

"Life will be the same but with worse bread" is so true - but thankfully after years of it you forget what real bread tasted like besides Warburtons do a cracking tiger loaf.

And yes, chocolate is fine as long as it doesn't have gluten in it.

Do check and see what you can get that's not branded gluten free, like rice based foods, pasta sauces, stir fry sauce, rice noodles, etc. Saves you money on buying the "gf" version which is exactly the same.

Gosh if this happened to my DC in terms of their diet they'd revolt, wheat is their favourite! She's just finished a hot cross bun ... It must have been very hard for you at the start. Thank you for taking the time to write

My daughter is coeliac and it is generally much better now than it was when she was diagnosed 12 years ago , even some of the bread has improved ! My advice is check labels and don’t necessarily shop in the free from section . M&S do some quite nice ready meals and their frozen triple cooked chips are GF and are the best oven chips .

Sorry you are coeliac and do give yourself time to be super grumpy about it - it is a bugger

However it will get easier and does become "normal" pretty quickly. For me the effort of it was well worth how much better I felt once I was diagnosed. It took me 6 weeks to feel better but I really did feel better.

I agree about coeliac being way more than an allergy and just not eating gluten. You do need to make sure that eating out etc understands fully the issues of contamination. If they start to take about separate areas and separate plates then I am happy to eat there. Otherwise they will get quizzed!

I make my own gluten free bread which is pretty good but also agree toasted gluten free bread is a bit better. If you are every in Stratford upon Avon there are some fab fully gluten free restaurants where you even get a choice of meals - the best puddings ever

Join coeliac uk as they have loads of info even if not in the Uk yourself.

You will be a constant label checker and even when you know a food is safe the recipe is then changed so do always check.

I get a regular bone scan appointments with dietician and regular blood tests to check all is well. Anemia is pretty common with coeliac so do push for regular tests. Also Thyroid issues.

You may need some extra vaccinations if diagnosed I was given pneumococcal vaccine and more covid vaccines as some coeliacs have reduced spleen function.

If you are not feeling better after a few weeks of being gluten free do go back to gp to ask for more blood tests. Initially I also had issues with lactose but as my intestines healed I was able to eat lactose foods again. Your body does need time to heal from all the gluten poisoning.

It will be ok and you will still have fab meals but and gluten free to help you over the initial stages

You are allowed to be sad, it is really hard. Not helped by the fact that people think you are being fussy or difficult. My 7 year old was diagnosed and has found it very hard. She cries about it a lot and has found it hard to accept. I have let her mourn because even though there are worse things it’s not an easy condition to deal with. She is slowly finding it easier but it’s a big adjustment.

I was about to say don't expect good bread and eating gf in Italy is easier than you would expect. However I've been beaten to it already.

I have been Coeliac for many years now, also diagnosed after pregnancy but main symptom was anaemia and it can be tough but is worth the effort.

Good points are that
-there is much more available than there used to be
-you will have more energy and feel so much better, I never used to exercise at all whereas now it is a big part of my life

Watch out for
-any bread that tastes nice as it's probably not gluten free (found out from experience)
-products sold as gf with a price hike which are actually gf anyway
-any thing with malt vinegar (made from barley)

If you have DC watch out for signs as it is hereditary . Had DS2 tested yesterday so now waiting for results.

My kids will eat Sainsbury's GF pasta too. I was getting fed up with cooking two saucepans of pasta.
Betty Crocker GF fudge cake and the chocolate fudge topping mix also excellent and more than acceptable for non GF people.
Marmite, soy sauce and lots of salt n vinegar crisp brands are out though. But there are more cider vinegar crisp options recently.

Awww grieve away, it takes time to get used to it. I think I have been wheat and gluten-free for nigh on 20 years now, and back then choice was really limited. I'd allow yourself 8 weeks to feel better. I've never been diagnosed celiac, I have been diagnosed with a wheat allergy though and after two years of being wheat free was still struggling and found it wasn't until I made extra sure I was cutting out gluten as well that I felt better and stopped having reactions. By then it was too late to test for celiac disease, as to do so they wanted me to start eating all the wheat and gluten again and I couldn't face it!

Spain is amazing for gluten free, personally I find it easier than Italy. There are facebook pages if you are on there. 'Celiacs eat out too' and 'Celiacs eat out abroad' are ones I constantly check for recommendations. You get used to asking questions at restaurants and you just learn to ask certain questions and the way they answer lets you know if they know what they are talking about and how seriously they take cross contamination.

Warburtons tiger bread is the only bread I bother with nowadays, its almost like bread lol. Sometimes I find tiger rolls and buy them too. Used to eat genius but found their bread is always sweet.

It does seem like a minefield but you will get there, google is your friend, along with a notepad and list of safe foods when shopping.

I am new to this too OP.

I am only a couple of weeks in and not yet starting to feel the benefits, still a bit unsure and feel like a reluctant Prima Donna when deciding what to cook or going to a restaurant etc. I used to really love my food, trying new foods, eating out, having a take away and trying lots of different recipes and foods at home as does DH. I also really love nice fresh especially sour dough bread and I love cakes and desserts too :-)

Whilst there are more choices out there now than previously. Its easier than I thought but not yet easy. Now if friends or family want me or us to go for a meal or try out a new restaurant together I find myself worrying and getting quite stressed (its not straight forward anymore) and I am thinking well what will I be able to eat!?! I feel worried, stressed and awkward looking up the menu before I am happy to commit. Also worrying about cross contamination after reading a lot of these posts too!! I hate the Gluten Free available on request on a menu as I would like to know what my options are before committing to a decision to eat there and then having the awkwardness at the table on the night and having the reassurances well you can just eat a little bit you’ll be alright from well meaning fellow guests who don’t really get it.

I am absolutely dreading going out with MIL when she come up in a few weeks time. As she will want to go to a fancy restaurant with a short menu so it will be extremely hard as I struggled to find something I liked even before this news. She also knows best and knows more than the doctors, dieticians, gastroenterologists etc (or so she thinks) and has already aired her views and doubts that she doesn’t think I have it as I am not like her friend so and so who does this that and the other straight away as soon as she’s even eaten it etc etc.

But yes, OMG the price of some things! I'm not in the U.K., I paid the equivalent of £6 for some gluten free oats yesterday. The normal oats were less than £1 ...

I know you're not in the UK, and this company is based in Scotland, but they may post out to you. I use these to make my own muesli and they're priced at £7.99 for 2.5 kilo. Is that any better than what you paid ?

Allow yourself that window of time, then know that you'll be fine. I used to feel like I was carrying around a red hot canon ball in my side/stomach, and basically just wanted to lay on the floor and toddler tantrum on the days that the gluten made me feel so ill.
These days are so much better. More energy to do what I wish, and I eat much healthier too.

www.realfoodsource.com/product/gluten-free-jumbo-porridge-oats-2-5kg-community-pack/

I was told to try going gluten free by my GP to see if it helped with my IBS.

My most successful thing was making savoury American muffins. They can be kept frozen, heated up in the microwave in 30-45 seconds and are delicious with plenty of butter. I used to make ham, cheese and paprika. The egg and the cheese means they don't crumble in the way lots of gluten free cooking attempts did for me. To be clear about how easy they were I was able to produce them in a student kitchen that had neither hob nor proper oven - just a microwave/combo oven thing.

I can dig the recipe out if helpful. My friend's mum who is GF makes all her own bread and reckons that is the best way to get decent stuff but when I tried to make gluten free bagels I think you could have killed someone with them so it's definitely a skill...

@imissbread love the name too!! It's so true, I get food envy when I see people eating baguettes or sougherdough- although I did have something in Bills on toast that was very very close to soughdough the other day. And their chicken skewer thing with yoghurt that comes with pitta was amazingly nice

Hi Gluten intolerant here.
I know it is better for me and I mostly am ok with that.

However, I hate going to meet people for coffee and a cake as there isn't usually anything for me. I used to love a slice of Victoria Sandwich cake or a Coffee and Walnut cake.
Or picking up a nice pasty.

I have just had El Paso gf fajitas from a kit and they were lovely.

I like Schar bread. I usually toast it and enjoy it.

M&S gf Victoria Sandwich cake is nowhere near as good as my mother's but it is ok.

Good luck OP, in a few weeks you will feel
Much better.

Thank you, everyone, for taking the time to write and offering your tips. It makes me feel much less alone and more prepared for the coming weeks (and forever).

I see how easy to forget the cross contamination stuff is, DH bought a lovely pretentious gluten-free loaf from a bakery this morning but forgot to ask about any of the cross-contamination stuff so I don't know if I can actually eat it 🤦🏻‍♀️

One more question - what do you do about sharing an oven with the rest of the family? Is that ok? While we're renting we can't exactly install another oven ...

Welcome!

I’ve been on this bandwagon so long it’s second nature but one thing I still find useful when travelling is a ‘restaurant card’ downloaded from www.celiactravel.com/cards/ in the appropriate language. I used to print them before travel, now I screenshot them.

We manage with one oven and I’ve never had an issue. I use a fair amount of foil to protect my portions 🤣

I'm sorry OP, its a shit diagnosis to get. I was diagnosed on my 21st birthday! (I will admit I ignored the diagnosis that day and went out and drank several pints of Guinness and had a last hoorah) but it is easier to be Coeliac these days (although its also getting worse as shelf space in the shops for gluten free foods seem to be shrinking as more space is taken up by vegan foods).
See a dietician if you can, they will go over the diet with you and help you understand better. I wasn't offered that option when I was diagnosed but my DD was diagnosed when she was 4 and that time we went to a dietician and I also went to an information day at the local hospital (where I was told that 'may contains' food can sometimes be consumed in moderation like for instance one small bar of chocolate that says may contain or produced in a factory that also processes gluten products but not any cereal/grain-based products that say 'may contain' as the risk of contamination is far higher with them than with chocolate or crisp products for example)

Does your country have a coeliac society? If so, join them. Also sign up with companies to get free samples - I got a whole lot of Schar products when I was diagnosed.

Bread is much better toasted, or freshly baked. This is a really good recipe for bread flour blend www.letthemeatgfcake.com/kims-gluten-free-bread-flour-blend/ and there's so many good recipes on that website but they are best on the day they are baked so any leftovers you should freeze straight away. Learning to bake GF will make life so much cheaper!

Have separate toasters, butter/any other spreads to the rest of your family. I only cook gluten free for my family so there's less risk of contamination but OH and DS do have normal bread, with their own toaster in a corner of the kitchen, and their own bread board for making sandwiches on.

When away I always buy foil to line baking trays with anything I am going eat. At home I have silver gluten free baking trays and a couple of black trays for gluten containing foods. All the family know which to use for which purpose. I also have one saucepan for gluten containing pasta etc and my other pans all stay gluten free.
If I am placing both kinds of trays in the oven I make sure my gluten free silver trays are on the top shelf and the black ones below.

We also use one oven but aside from bread / biscuits I try to just buy gf for staples like pasta, oven chips etc . I buy cakes from Sponge and the gf ones are lovely .