Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns we suggest you consult your GP.

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

(44 Posts)
Howmanytimes Sat 16-Feb-13 15:01:36

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!

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.

MoreBeta Sat 16-Feb-13 15:18:12

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

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

MoreBeta Sat 16-Feb-13 15:23:06

Ah. I am not sure either.

Howmanytimes Sat 16-Feb-13 20:34:06

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.

GoAndAskDaddy Sat 16-Feb-13 21:31:27

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

CheerfulYank Sat 16-Feb-13 21:34:44

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

Catsdontcare Sat 16-Feb-13 21:37:24

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.

WheresTheCat Sat 16-Feb-13 21:40:25

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

Almost all caribean food is gf. Making gf bread is vastly cheaper than buying it. Branston beans are gf (don't think Heinz are though). Asda own brand gf flour works quite well for cake making. Good luck!

Catsdontcare Sat 16-Feb-13 21:50:43

Heinz beans are also gluten free.

Bessie123 Sat 16-Feb-13 21:55:20

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

Floralnomad Sat 16-Feb-13 22:02:30

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 .

Howmanytimes Sat 16-Feb-13 22:05:22

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.

MoreBeta Sun 17-Feb-13 08:42:01

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.

Lonecatwithkitten Sun 17-Feb-13 13:02:26

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.

pixi2 Sun 17-Feb-13 13:12:24

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

Floralnomad Sun 17-Feb-13 14:45:25

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.

Howmanytimes Sun 17-Feb-13 18:44:05

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.

colditz Sun 17-Feb-13 18:52:09

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

tipp2chicago Sun 17-Feb-13 19:04:18

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.

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!

freetoanyhome Sun 17-Feb-13 19:37:15

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.

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.

Howmanytimes Sun 17-Feb-13 20:08:18

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.

MoreBeta Sun 17-Feb-13 21:39:34

freetoanyhome - I had that attitude from doctors for years. In fact for 20 years no GP/consultant mentioned gluten to me at all. In the end I did a gluten exclusion diet myself as I felt extremely ill. Within a few days I felt so much better I then went to see my GP and badgered him until I got a proper diagnosis.

You do have to go back to eating gluten though in order for the blood test and gut biopsy to work.

freetoanyhome Mon 18-Feb-13 12:16:06

Thanks MoreBeta. 30 years of feeling unwell. Bloating, runs, tiredness, acid reflux so bad I keep a hip flask!
At least they are finally checking for stuff. The GP did a blood test for B12 and folate. Lowish but antacids can inhibit absorption (as can coeliacs) and plan a non-fasting sugar test for diabetes (I'm thirsty but dont pee lots).
I just want to feel well and did notice that when I did Atkins the acid reflux almost vanished. But without a definate reason I dont want to embark on such a strict diet. DH has suggested a week of wheat/gluten free. A friend said her wheat intolerance causes the same symptoms but its not coeliacs in her case. Its like a sherlock holmes case!
So embarking on a GF week as a small test.

MoreBeta Mon 18-Feb-13 12:32:52

My gluten intolerance in not coeliac either.

However, my consultant is doing a worldwide study on non coeliac gluten intolerance and he and his colleagues have developed a new theory about gluten and he says that coeliac is only one manifestation of a wide spectrum condition that has huge health implications. In my case, it has caused chronic blader pain, gut problems, acid reflux, skin conditions, joint pain and early stage osteperosis.

There are over 100 symptoms and manifestations of gluten intolerance but the medical profession has been very slow to recognise the acute health problems our gluten heavy western diet causes.

I am convinced that the epidemic of 'IBS' is just another manifestation.

Do try a total exclusion diet and see how you feel. I felt completely well after 2 weeks and very ill after just 1 day of going back to gluten.

MoreBeta Mon 18-Feb-13 12:35:09

Incidentally my consulant was very careful to test for wheat intolerance to exclude that and distinguish it from 'gluten intolerance'.

They are two completely different conditions although often confusingly similar gut symptoms.

freetoanyhome Mon 18-Feb-13 13:01:23

what did you exclude and what did you eat?
(I dont eat meat)

MoreBeta Mon 18-Feb-13 17:06:30

I excluded all grains and grain based products except rice. You have to eliminate all shop bought sauces. Use Kalo stock cubes, no beer or wheat based spirits drinks, no soy sauce. Avoid cornflakes (sprayed with barley) and even oats which may be contaminated.

I basically just ate fresh meat, fruit, veg, beans, rice. You really have to be so rigorous in this phase to make sure you are not accidentally 'glutenising' yourself. I also avoided all dairy as I suspected I had lactose issues.

Ideally, you should do an exclusion diet under the direction of a dietician and doctor but to be frank I was so ill I could hardly walk. I was frankly desperate. Once I had the evidence though I then went to see a consultant and forced them to listen to me.

freetoanyhome Mon 18-Feb-13 17:24:45

thankyou.
No beer <sob>

estrella do a nice gluten free beergrin

MoreBeta Mon 18-Feb-13 21:40:50

I have developed quite a wine habit though! grin

MarinaTheMarvellous Wed 20-Feb-13 18:37:49

HowManyTimes do you feel well now? I have coeliac disease and also under active thyroid but still can feel very very tired with muscle and joint aches despite going GF and being on levothyroxine.

Howmanytimes Wed 20-Feb-13 20:38:37

Hi MarinaTheMarvellous (great name!) I only started the GFD on Friday immediately after I spoke to the doctor. It's still early days but I am a bit disappointed that I feel exactly the same. I hoped the cloud would lift the next morning and I would be skipping down the street! How long have you been GF?

My ds1 is coeliac and I think it took him at least 6 weeks to start to feel better - I expected his diarrhoea to stop right away - and it took several months.

Unless you are much more of a domestic godess than I am I suggest you wash out your cutlery drawer. I was kind of shocked at the amount of stuff in there - lots of crumbs probably gluten based.

emmylou157 Wed 20-Feb-13 21:14:13

Hi,
Not just the cutlery drawer you need a new toaster/toaster bags, separate jam, butter etc (anything someone else might spread on normal bread and put knife back in), ensure all chopping boards are washed thoroughly after having any gluten containing foods on them. It will get easier and join coeliac uk their food and drink directory is a god send! Good luck!

Howmanytimes Thu 21-Feb-13 17:21:55

SilasGreenback the state of my cutlery drawer certainly proved I'm no domestic goddess! I had to give it a good going over! Thanks Emmylou, I'm doing my bread on (the now clean) grill and moved the toaster. I've done more cleaning in the last 5 days than the last 5 weeks!
I'm hanging out for my coeliac UK directory so I can have a bar of chocolate - I've got serious withdrawal.

notapizzaeater Thu 21-Feb-13 17:32:42

Most cadburys choc is gf, cream eggs are so u can get our fix.

Heinz beans and mini sausages are gf - a good store cupboard standby.

I always cook extra portions now and freeze them so we can rustle up a quick meal.

We have 2 types of butter in the house, dh and I have one ds (coeliac) has the other so we never get confused. Ds has his own toaster (goes in cupboard when not in use). We got rid of all my wooden cooking tools and replaced them with silicon ones. I buy coloured baking tins to make gf cakes in so we can tell quickly.

Gf Yorkshire puddings are fab : 4 eggs, 90 g cornflour, milk (to double cream consistency) whisk, stick in oven 180 for 20 mins - we all eat these now and no one can tell the difference.

Gravy - I use stock and cornflour and gravy browning to make it look right ....

CMOTDibbler Thu 21-Feb-13 17:40:20

It took me weeks to feel a bit better, and probably a year to reach normal overall - remember your body has been damaging itself for a long time, and your gut won't regrow, nor your nutrient stocks be replenished in days or a few weeks.

I've been gf for 15 years, and it will all be second nature to you soon. Re choc, you can have just about anything that doesn't have wafer or biscuit in it as very few have hidden gluten, though some fun size ones do. Just read the label as all allergy items have to be declared. Cadburys declare very clearly as are own brand M&S and Sainsburys stuff. You can see the list of all GF things from M&S here

Howmanytimes Thu 21-Feb-13 19:22:50

Hooray, Cadbury's is back on and I love Creme eggs. I didn't realise I had to get rid of wooden spoons- I put them in the dishwasher (I know you shouldn't). Thanks for the Yorkshire's recipe notapizzaeater I will definitely give it a go. I take your point CMOTDibbler about feeling better, it'd be nice if it was immediate though wouldn't it! Thanks for the M&S list. You're all being so helpful, thank you.

MarinaTheMarvellous Fri 22-Feb-13 22:53:55

Thanks Howmanytimes It's my superhero name! Sorry realised after I asked that it was very new for you. I have been GF over 2 years and it was better after a few weeks - felt like I had withdrawal symptoms from the gluten for a while. Then when I started getting really tired again it turned out to be hypothyroidism and again felt better for a while on levothyroxine but still struggle with fatigue, muscle and joint aches to the point where doc suggesting fibromyalgia/CFS... Recently upped levo and feeling more energy but still achey.. Just wish I could figure it out and get properly well again. Good luck with the diet it takes some getting used to but avoiding processed food simplifies things.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now