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.

I can't give advice on your diet I'm afraid but nice just wanted to say - give yourself permission to feel sorry for yourself. There will always be someone who has itnworse off that you, but it doesn't mean you can't be unhappy, or upset, or disappointed. You can grieve and be grateful at the same time. This is a big, life changing diagnosis and it will take time for you to adapt and adjust. And you need to grieve the future you saw ahead of you. No it's not life threatening or terminal, but its still life changing, and the last thing you need is to be beating yourself up for having valid emotions about it.
Best wishes for the future OP.

I had similar 3 months ago and was so stressed . I needn’t have been !!! I’ve been amazed at GF alternatives and whilst some are expensive I can’t tell the difference with most and that really shocked me !

I feel SO much better too that in itself is worth any inconvenience but honestly I think you’ll be surprised as it’s not been the awful experience I thought it would be and I’m actually looking back wondering why I got so anxious

It's not as hard as you think it's going to be. You are lucky to be diagnosed now - shops here all have big free from sections that they didn't have 10 years ago. With regard to holidays, Italy in particular is great for GF. A lot more people are routinely tested over there so a bigger percentage of their population is diagnosed Coeliac.

Life will be basically the same op, just with slightly worse bread. You'll cope fine.

This is such a lovely reply, thank you.

I've given myself four days to wallow Although seriously, I will try and take your advice.

There is a useful site online called Diet Doctor which is about low carb food but this would also be useful for gluten free as is about reducing grains / gluten.

There is also a book by someone called Perlmutter I think it is Wheat Belly perhaps?

Maybe looking at some of this might help. Best wishes.

This is so reassuring to read, thank you.

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 ...

'Life will be the same but with worse bread' will be my mantra! Thank you.

And also thank you for the Italy suggestion, it's a nice one to aim for. I haven't actually been yet!

I like to read as much as I can about things, so thank you I will order the book and look at the website.

Thank you for being so nice, everyone

Oh OP I’m a few months in your future but with a different food allergy. It was super sad the day I got the results, I had my final meals over a weekend and ate my favourites like a prisoner n death row). Completely get your mindset right now!

It does get easier and there’s lots of great foods, Morrisons is one of the best places I’ve found. Anything with may contain traces I have eaten as it’s not life threatening (we don’t need an epi pen) and the same with yours we just might end up on the toilet more often!

Gluten free bread is a bit pants from my friends who are also coeliac so don’t go in with high hopes. Lots of pizzas now do gluten free bases which is great and lots of restaurants are great with allergies now days.

The warburtons GF artisan bread is really good toasted for anyone struggling. Other loaves are like bricks 😂😂

Also Tesco finest free from biscuits /cookies are the best I’ve tried so far I can’t tell the difference

I'm 25 years into coeliac life, and I still sulk sometimes about limited choices. But I travel the world for work, and though sometimes maybe I eat more salad and rice than I'd like to I've never starved yet. You do maybe benefit from a bit of upfront research on where you are going and the best restaurants, but thats so easy now and online groups are incredible at telling you things to look for.
Some countries are better than others, but again you can find that out.
But you do need to mourn the loss of your previous life of getting food anywhere and having a choice and coming to an acceptance that things like weddings and parties (and depending on your family, meals cooked by others, my exSIL didn't believe in gluten free) aren't the same at all and it is always best to have a cereal bar in your handbag. Or develop a dark humour about it as its the only way to get over being served melon as a starter, dry meat, and melon as pudding. I've met some lovely people over the gluten free food (or lack of it) at events

I'm sorry for your diagnosis, it's a rubbish one. You need to be aware than even a tiny amount of gluten will damage your intestine so although the choice where risk is comcenred is an individual one, you need to avoid anything that has been contaminated. This stretches to food preparation - ideally you should have separate utensils, boards and pans etc in the kitchen because molecules of gluten can stick in scratches.

Thank you for understanding! I know I'll move through it soon enough, but it really does feel a bit like mourning

And good luck with your own allergy! I hope it's an 'easy' one to deal with ...

This is good to know as I can get this where I am, thank you

Gah, I hate melon! I hadn't even got to 'weddings and events' in my head, but of course you're right ... Thank you for your reassurance on travel. At 25 years you must be an expert!

Italy is food heaven for gluten free the bigger towns have a entirely gluten free bakery chain!

It hasn't stopped me travelling I have just learnt what's likely to be safe and what isn't! Vietnam is pretty good gluten free wise as they have a lot more rice noodles and less soya sauce.

Eating out in the UK isn't hard at all majority of places have a gf menu and even service stations if they have a Leon then they have gf chicken nuggets along with a load of rice boxes.

Get your head around the hidden things - soya sauce, Worcestershire sauce (tescos do a gf version), stock, crisps, some drinks (cheap cola), many sausages, some rice packs etc. You will get quick at scan reading I promise.

Sainsburys gf pasta is the best IMO and my kids eat it without spotting the difference. I don't bother with the bread it's rubbish and expensive!
I use quinoa instead of cous cous, Polenta for making things crispy and smashed up oatcakes to replace breadcrumbs in recipes

I have had to go gluten free at 61. I miss lots of things, but in all honesty have actually eaten better as I no longer eat pasties, cake and less bread.

My tips are. Most GF bread is pretty rubbish, but it's all a bit better toasted. The warbutons tiger one is acceptable as is M&S seeded. I also use the Bfree wraps. I do more whole grain rice based meals than noodles and more things involving salad and vegetables. M&S gluten free spaghetti is good (doesn't stick) and M&S do a good range of GF things in breadcrumbs (chicken, fish etc) I eat a lot of tinned fish too . I also eat a lot of hummous and oatcakes and porridge.

I always carry a pack of nairns cheese oatcakes in my bag for an emergency and a couple of those yoghurt coated fruit and nut bars. Prawn crackers make a very good snack

I'm sorry this has happened to you. I know how stressed it was when it was thought I might have it.

Make sure you make it clear that you have Coeliac disease and don't call it "gluten intolerance". Lots of people have jumped on the gluten-free bandwagon and it hasn't been helpful to people with Coeliac. Coeliac is a serious auto-immune disease and there are long-term health risks associated with not eating gluten free. I'm not saying this to frighten you, but to encourage you to get people to take you seriously - you can't even use the same toaster for your bread...

Whilst I agree having a gluten intolerance isn't much fun either and I certainly haven't jumped on a bandwagon by having it! I vomit, bloat, and feel awful for days even from traces and coeliac tests are negative.

Yes there are some people who choose to be gluten free without any issues (god knows why) but the way I look at it is its made choice, products and awareness a whole load better in most cases!

Thank you, this is all really useful. It sounds like such a lot of mental effort, I suppose it becomes second nature before long. And yes, much better than being diagnosed 10 or 15 years ago!

I have a child who was diagnosed aged 5.
Firstly allow yourself to grieve/come to terms with it then get practical until it becomes normal.
Have you seen a dietian? If not might be useful.
Join the coeliac society they were so helpful in the early days.
Some companies send free samples when newly diagnosed if you sign up which can help you decide what you like and don't like and what's available.
Don't assume everything is off limits its a lot easier these days.
To keep cost down try to use naturally gluten free products rather than free from range.
Have separate butter, toaster (or toaster bags) to avoid cross contamination.
Go through your cupboards so you know what is suitable. We have a cupboard specifically for dc so he knows anything in there is suitable.
Re holidays we did all inclusive last year no problem it was so easy. We rang the hotel to let them know our requirements and then printed off an explanation in Spanish as to what coeliac is. The supermarkets in Spain were so much better.
Seek out independent places they are usually better at adapting menu. We have a local cafe where everything is gluten free.
Regarding feeling better they say about 2 weeks to start seeing improvement and 6-12 months for full healing. Long term dc improved but not fully and went on to get a refractory coeliac diagnosis so definitely if you don't fully improve do get advice because since treatment dc has been so much better.
Lots of chocolate is suitable watch out for the may contain gluten though.
We were advised not to use gf oats for at least 6 months then introduce and use only if no reaction.
Lots of social media that tells you where to get fish and chips etc we had to travel over 2 hours in the early days for fish and chips now we can get them from our local.

More vegetables can only be a good thing! Thank you for all your tips, you're right about packing something in your bag. I had been worrying about being somewhere I couldn't eat anything. 61 is late to have to give your diet such a radical overhaul, I hope it has helped you. DH said to me 'just think, you've had three wonderful gluten-ful decades'

Thank you for the well-wishes. I know it's silly but it really does feel like something bad has happened