Blood test + for coeliac desease, would appreciate some advice, is it curtains for my bread?

[SpaceCadet]

went to the gp, week and a half ago because i was feeling ill, was worried my pneumonia was returning[paranoid], gp said chest sounded fine but sent me to hospital where pluerisy was diagnosed.
whilst in his surgery though, he asks the usual questions, waterworks bowels etc all ok?
well no i reply ..{tmi} but ive had a dicky tum for 2 years.
i describe everything to him, no i havent lost weight etc, in fact ive gained weight, he says he wants to do a blood test for coeliac desease, fair enough says i, and think no more of it.
today the surgery have rung, the test is positive and i have to have a biopsy..im feeling rather scared and also worried about the diet changes that are involved.
does any one else have this, or know someone who does?
would really appreciate any advice whatsoever.
TIA

Hi spacey - hopefully your health will improve now you have a diagnisis. Don't know much about it I am afraid but you can get bread here and loads of info here HTH.

My DDs best friend (6) was diagnosed as Coeliac a year or so ago. As a result of this her Mum was also tested and she too came up positive as Coeliac (both had biopsies).

The Mum said there was a lot of reading up on the condition, adapting recipes etc but they are are just getting on with it.

From what she says you have to be more organised, planning meals in advance, taking food with you as you can't just pick up a sandwich etc. Apparently the Coeliac Society (I think?) produces a book that lists all the gluten-free products (named and supermarket brands) and this is a god-send for doing your shopping.

HTH a bit.

I have a friend with coeliac disease and am in the process of being tested for it myself for much the same reasons as you describe (without the pneumonia or pleurisy though - poor you ).

You can get gluten free products on prescription so free if you don't pay for them. My friend buys one of those annual certificates, about £60-70 I think but it covers all her prescriptions not just the coeliac related ones.

You would have to cut out all sources of gluten - basically anything containing wheat, rye, barley (and possibly oats although this depends on the severity of the condition) and any products or derivatives thereof. Most food labels these days have an allergy section where it will state whether there is any gluten in the product.

It is quite important that you eat as you usually do until you have a dx as if you cut out gluten now it will skew the results of any tests iyswim.

The "healthy" sections of many supermarkets have loads of gluten free pasta, bread, cakes etc although they are more expensive than the normal types.

I have been stuffing my face with doughnuts today with the excuse that I might not be able to eat them for much longer!

Fingers crossed for you (and me too!)

thanks everyone, thats really helpful..am still in shock about it tbh, the thought of having to completely change my diet..

clerkKent knows a lot about this - I think it can run in families (but not sure how it is passed down)

hopefully once you are on the gluten free diet you will start to feel so much better

from what I gather, the biopsy is a fairly standard procedure (for coeliacs) where they check how your innards are looking!

fox, yes the gp said it was the gold standard test for this desease, im wondering how long ive had it now, and how much damage it may have done.
ds suffers with tummy trouble too, should he be tested?

ds probably should be tested yes, just to be sure.

yes I agree with Peachy. Might aswell ask GP to run the test for ds (remember to make sure he has lots of gluten in the weeks leading up to the test).

I'm glad your GP ran the test for you (loads put it off and off and wait for you to follow a gluten free diet first because I think the test is quite expensive). You know it can lead to depression in some people (if you have ever suffered this in the past).

Don't worry SpaceCadet, you don't need to radically change your diet. And in fact being diagnosed with Coeliacs is actually easier to manage that 'just' being wheat intolerant (like my dh) as you get stuff on prescription and also you get the support of the Coeliac Society, who have loads of info to help you. (So I hear from my friend with Coeliacs, they won't entertain my dh as a mere interloper!).

Odd that there is no weight loss involved but as you have 'only' had an upset tummy I guess maybe it's not a very severe case (my friend would need hospitalising if she had eaten any wheat).

It really isn't that bad, and if yours is a mild case it means you can slip occasionally and not pay a hefty penalty. Eating out is generally the worst but UK restaurants are light years ahead in this respect - quite often you can ask whether such-and-such has wheat and they will produce a massive manual of all of their recipes and be able to tell you exactly what each one contains, and swap about sauces as necessary.

You may want to avoid going on holiday to France for a while - but Italy is great apparently!

I forgot to say that the friend and her daughter that I mentioned earlier also had a dramatic increase in energy levels -less sluggishness etc.

The Mum (who likes the occasional tipple) has also found lots of gluten free wines and beers , so if you're fond of a drink you'll be pleased to know that its not out of bounds !

It really surprised me to find out the types of foods that have to be avoided (or alternative brands sought) especially where children are concerned eg. some tomato ketchups,yoghurts, baked beans, sausages ......

It can be done though and, as someone else said, this is probably one of the best countries in the world for such a diet.

I don't have Coeliacs but have had to adapt to a milk free diet since my twenties. it's a PITA at first, but you'd be surprised how quickly it becomes second nature and you get back to shopping quickly again.

Most supermarket customer services will give you info packs on their own brands these days, and there is plenty of choice from people like the stamp collection for other things.

There are even gluten free christmas cakes and pussings out there to order (or I can get you a recipe- MIL often makes them for her clients)

Ah, sausages are the worst! BUT I can reveal that Sainsburys do fabulous gluten free sausages in their Taste The Difference range, the pork & herb, the Toulouse and the Sicilian. M&S do some as well (not as good) and of course you can buy specialist gluten-free ones as well (also not that great).

Booze isn't too much of a problem. You will have to get used to reading the labels on stuff but seriously - the labelling in this country is fantastic, particularly supermarket own brands.

Also loads you can buy online, check out Goodness Direct .

will definitely ask the gp to run tests on ds then.
ive suffered from depression on and off for years but put that down to my sluggish thyroid.
did a bit of reading up today and it does say that it can occur in pregnancy and can cause weight gain as well as weight loss.

tribpot, cant afford any holidays anyway!
do i have to get special food on prescription?
i go to slimming world too, wonder how this will work with my diet?

SC, if you are worried about your weight my friend (who wasn't big to begin with) lost lots of weight when she was diagnosed and changed her diet.

thanks betty-it may well explain the fact that out of nowhere, i suddenly gained nearly 3 stone after dd was born, i started with the dicky tummy when i was 33 weeks preg with her.

SpaceCadet, just to reassure you, any damage that has been done to your intestine should repair itself within a couple of years of dx and diet change (assuming you get a positive dx of course!)

I am half hoping to get a positive dx myself in a funny kind of a way - at least I'll know what is wrong with me and how to fix it. I have put on 2.5 stone since dd was born (she's 2.1) and I am 4 stone heavier than I was when I got married .

Hi there, Im newish on here so you may not know me but saw this thread which interested me. Ive had coeliac disease since I was 19. Im now 30. To be honest with you It's just normal way of life for me now. I know what I can and can't eat without thinking now. I get bread, pasta, plain biscuits and crackers on prescription and anything else (as much as its dear!!) I get from all supermarkets, ie. Asda, Tesco, Sainsburys. Theres quite a bit to choose from in the "free from" aisles. If you do get diagnosed with it really don't worry about it hun. Know it won't be nice but believe me once you've started on the diet you'll drastically notice a difference. I went down to just under 5 stone before diagnosis and was really tired and anaemic but soon picked up when going on diet. Hope this has helped. Ann xx

I think the secret to it being cheap and easy is to pick things that are naturally gluten free and make them your new food friends.

Potatoes, rice, polenta, sweet potato are all great for carbs with meals and are cheaper than gluten free pasta (I have GF pasta around once a month for a change) Make double and get used to having 2 proper meals a day instead of a sandwich and a meal.

mymama has posted a boiled chocolate cake recipe that works well with potato and soy flour.

GF bread can be quite good toasted, but it is not the same, so I have maybe 4 pieces of toast a week.

I'd rather spend my money on chocolate and cashew nuts than bread that doesn't taste like bread.

You may find you don't need slimming world once you are absorbing your food properly and not eating food that is making you ill. The coeliac diet is very good for the waistline anyway as you can never eat out without asking a million questions and so you go for things like sushi, no sauces, no desserts etc.

After a month I couldn't even remember what bread tasted like and it was so nice not going to the toilet every five minutes that I am actually repelled by it now.

Agree threebob - easier just to naturally eat gluten-free (not hard to do once you get used to it) although another top tip I can reveal is that you can take a GF pizza base into Pizza Express or The Hut and they will make one of their pizzas on it.

I saw on the back of this month's Food Matters mag that Glutafin have a section on their website for the newly-diagnosed: here it is - hope this helps!

thanks everyone for your replies-am awaiting biopsy appointment now, will update when i get results.

SpaceCadet, I have just foudn this thread (thanks to Foxy's mention of my name). I was diagnosed via a biopsy 18 months ago, and had a repeat biopsy about 4 months ago. It is an uncomfortable procedure but it does not last long. I had a sedative each time, and that helped. Swallowing a tube is not very pleasant, but they are in and out in under 10 minutes.

I had never been interested in the ingredients of my food before, but it becomes mandatory for a coeliac. Most products are clearly labelled "contains gluten", but the definitive guide is the coeliac handbook from the Coeliac Society (free to members). If the biopsy is positive, it is certainly worth joining www.coeliac.co.uk/. Eating out is more difficult and many waiters do not understnad if you say you need GF food (are we allowed to use that combination of initials now?). Some chains like wagamama and Slug & Lettuce can tell you exactly what is suitable.

Someone here said you can occassionally have food with gluten. I was told by my gastroenterologist that if I ate a piece of bread the size of a marble, it would take my intestines 6 weeks to recover. I am strictly GF.

hi spacey, here's a link to a phone in programme on coeliac disease

dw heard that talk, and as a direct result I was tested for coeliac (as my brother has it).