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Told yesterday that I definitely have Coeliac disease. I'm starving!

43 replies

Howmanytimes · 16/02/2013 15:01

Bought GF porridge oats for breakfast but have since read you shouldn't at first. Doctor told me my biopsy confirmed blood test and that I would now be referred to dietician and gastroenterologist. I feel like I've just been left hanging. Got a great book from the library and the Internet is helping but my kids keep offering me sweets and I'm starving!

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2blessed2bstressed · 16/02/2013 15:10

M & S have a great selection of stuff that should be ok for you, it's all very clearly labelled, and in my local branch, it's grouped together so easy to find. I was on a mission to find good, quick food for dsis's coeliac friend who came to visit a few weeks ago, and I had been at a bit of loss, so it was a godsend.
Mind you, the friend turned her nose up at all the things I had bought, and specially organised for her, and wandered down to our local Tesco to purchase herself two bread and butter puddings that she had for her tea Hmm
Anyway, until you see dietician, and get to grips with preparing things at home from scratch yourself, then I think M & S would be a good place to start, and you'll definitely find plenty to tide you over.

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MoreBeta · 16/02/2013 15:18

Hang on. Have they told you to _keep eating gluten until you have the biopsy. This is very important?

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2blessed2bstressed · 16/02/2013 15:21

Oh, I thought op had already had biopsy.....maybe I misunderstood?

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MoreBeta · 16/02/2013 15:23

Ah. I am not sure either.

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Howmanytimes · 16/02/2013 20:34

Thanks for replying. I got the result of the biopsy yesterday so it's all systems go! I was just feeling a bit lost until I get to see the dietician. My local sainsbury's has a decent selection of free from stuff. I think I just need to get my head round it. I'm finding it hard to see how to juggle the kitchen at the moment to avoid cross contamination. I'm sure I'll work it out. Thanks again.

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GoAndAskDaddy · 16/02/2013 21:31

You should contact CoeliacUK....they have a website. Base meals around rice/potato (unprocessed types), eg a roast dinner! Thicken sauces with cornflour.

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CheerfulYank · 16/02/2013 21:34

It takes awhile to get used to but it's not hard once you get in the swing of things. :) I've been gf for nine years and it's gotten so much easier even in that time.

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Catsdontcare · 16/02/2013 21:37

Elana's pantry is a good website for recipes. DS is gluten free and tbh it's been easier for me to make us all gluten free at home. Going out to eat on the other hand is really hard.

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WheresTheCat · 16/02/2013 21:40

Don't starve - you can eat lots of things.
Brakfast this week I'm making my own muesli - gluten free oats with lots of dried fruit and nuts, bananas on top.
For a snack at work I will have a banana or chocolate rice cakes
Lunch is home made soup (although you can eat some shop bought - check the labels) with home made cheese scones or flatbreads)
Tons of things to cook for tea: I cook from scratch, never eat ready meals (as they're too expensive anyway!) but also then I can just adjust to ensure I don't have to cook a separate meal for me!
You can eat some chocolate and sweets, and you can make lovely gluten free cakes, the girls and I have been making coconut cupcakes this afternoon!
PM me if you want some recipes Grin

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HorraceTheOtter · 16/02/2013 21:48

This reply has been deleted

Message withdrawn at poster's request.

Catsdontcare · 16/02/2013 21:50

Heinz beans are also gluten free.

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Bessie123 · 16/02/2013 21:55

Why don't you look at some of the low carb blogs or even the low carb threads in the diet bits of mn? There are loads of food ideas on there that don't involve gluten. It is pretty easy to avoid gluten but you need to be slightly more organised, taking back up food with you if you are not at home for mealtimes etc. good luck Grin

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Floralnomad · 16/02/2013 22:02

In Nadia Sawahlas new cook book there is a very good GF chocolate cake recipe , my coeliac daughter is very ,very fussy and she loves it . I find Sainsburys have the best selection of the supermarkets ,but M&S do very nice GF spaghetti . The fresh breads are much nicer than the long life ,but quite expensive. Dominos and Pizza Hut both do GF pizza that is ok .

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Howmanytimes · 16/02/2013 22:05

Thanks again for your replies. I think I kind of felt paralysed with uncertainty earlier! I usually cook everything from scratch too and already make home made soup. It's the parts per million thing and gluten being hidden in stuff that stuns me. I will take you up on your kind offer WheresTheCat, inspiration for recipes gratefully received.

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MoreBeta · 17/02/2013 08:42

Ah I see you have had it confirmed and had all the tests.

I too was starving at first. One of the main reason for this was that I was addicted to gluten containing products. A dietician told me athat the things that do us harm are usually the thing we become addicted to. The 'hunger' is partly withdrawal symptoms - opening a cupboard with bread or flour in was a weird experience at first. I was so withdrawn I could actually smell wheat flour from quite a distance.

In reality you can eat as much much meat, eggs, vegetables, nuts, mushrooms, rice as you like. You may need to be careful with lactose (milk sugar) as your gut may be damaged. Lactofree milk is readily available at supermarkets. Ask your dietician about that.

Other than that you can buy Does Farm gluten free pasta at supermarkets (Sainsbury) and you can always buy Genius GF bread until you get used to the diet.

Do not use ready made sauces. They often contain flour. Also be careful to avoid hidden gluten in thing like oven chips (dusted with wheat flour), cornflakes (sprayed with barley malt)

Your diet will gradually stabilise and you wil get used to it. I found cakes and biscuits the thing I missed most so now I bake my own with Doves GF flour. That takes a while to get used to though but you wil become a good cook and very probably your family will eat what you eat and not notice. We all eat far too much wheat flour anyway.

DW now says she feels less bloated as she eat my GF food. I found I lost 1.5 stones in a few weeks as I was so bloated with fluid but after that my weight You may find that happens too.

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Lonecatwithkitten · 17/02/2013 13:02

I have been gluten free since August. I bought PhilVickery' s baking book and the Honeybuns book as I love baking. If you cook from scratch at home it is really easy. My daughter also eats gluten free now too we just don't have gluten containing items at home.
I often substitute dove's farm GF flour in recipes and can now whip up a lovely batch of gluten free dumplings to go in a stew. Once you start it is actually really easy.

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pixi2 · 17/02/2013 13:12

Following this thread with interest. Ds (3) had his blood test last week so we are just waiting now.

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Floralnomad · 17/02/2013 14:45

Apart from bread we are mainly GF for the whole family , the pasta and flour are fine if you buy good quality ones. I draw the line at bread as it would cost a fortune at £2.80 + for a little loaf as my husband and son both eat a lot of sandwiches.

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Howmanytimes · 17/02/2013 18:44

I did my first big shop today and it was not too bad. I found the gluten free soy sauce which I'm pleased about. I also cleaned out all the cupboards in an attempt to separate everything. I have started to look through recipe books and have found quite a bit of inspiration.

Floral nomad I found the wait between blood test and diagnosis interminable. Blood test on 30 October 2012, formal diagnosis following biopsy 15 February 2013.

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colditz · 17/02/2013 18:52

Don't forget roast potatoes for that starchy salty hit that sometimes yu just NEED

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tipp2chicago · 17/02/2013 19:04

There's also a book called "Easy Gluten Free Cooking" by Darina Allen (Rachel Allen's MIL) and Rosemary Kearney which my cousins found useful. It's less than a tenner on Amazon.

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becstarlightstarbright · 17/02/2013 19:22

It becomes second nature after a while. I was diagnosed about 8 years ago. A few months after being gluten free I felt so much better - and that really helped with the motivation of sticking to the diet. Now when I accidentally pick up some gluten cross-contamination I feel awful. I mostly stick to a naturally gluten free diet as I just find it easier and nicer. Plus Xanthan Gum seems to give me migraines and that is a really common ingredient in GF baking (I've never met anyone else who reacts to it... I'm just weird). So typical meals for me are:-
Breakfast - Greek yoghurt with chopped fruit and nuts, or A latte and some almonds, or some bacon with mushrooms and tomatoes
Lunch - I usually take a salad to work and a piece of fruit and a yoghurt. At the weekend we always have a roast (cornflour to thicken the gravy)
Dinner - our most common are - Chilli and rice, Baked potato and casserole, Bolognaise with courgette ribbons (cut with a veg peeler - lightly steam and they're like tagliatelli), chicken beef or prawn stir fry with lot of veg, Chicken curry with cauliflower and potato curry side dish, tray roast of chicken pieces or sausages with mediterranean herbs and peppers, plum tomatoes, aubergines, courgettes etc all roast together.
Far from starving, I'm a bit overweight at the moment, dammit!

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freetoanyhome · 17/02/2013 19:37

Do doctors take you seriously if you ask to be tested? I have many of the symptoms and am constantly unwell but no cause has ever been found. Ive never been tested despite bloating, runs, acid reflux so bad I live on antacids etc etc but I feel like if I ask for a test I will get rolled eyes.
When I have cut out even just bread I have felt better but of course dont keep it up without a darn good reason.

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becstarlightstarbright · 17/02/2013 20:01

If you are constantly unwell a GP should refer you for investigation - and the hospital doctor will decide whether coeliac is a likely cause and whether to test you. It would be worth mentioning that you felt better when you tried avoiding gluten but didn't keep it up. My experience (of being a patient, and of being related to lots of doctors...) is that they do roll their eyes if you come in with an attitude of 'I have diagnosed myself with this. Concur with my diagnosis and follow the course of treatment I've decided I should have.' But they don't if you come in with 'I've got these symptoms. I've had them for x amount of time, and they are at y level of severity. I wondered if it could be coeliac and tried (eg giving up gluten) which seemed to help. I didn't stick to it and the symptoms returned. Do you think it's likely?' Sounds awful to be so poorly - hope you find a cause and treatment soon.

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Howmanytimes · 17/02/2013 20:08

You need to persevere with the doctors. I have an under active thyroid and was telling the doctor how tired I was. They gave me a blood test and found I had very low iron. They then put it down to heavy periods. I complained about having to go on such major iron tablets because of all my digestive troubles and finally a doctor put two and two together and suggested we rule out coeliac. To be honest I was very surprised by the suggestion. I didn't really know anything about coeliac then. I think I'm still stunned now; can't quite believe it.

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