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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!

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.

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.

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

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 ....

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.

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!

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.

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?

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.

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

I have developed quite a wine habit though! grin

estrella do a nice gluten free beergrin

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

thankyou.
No beer <sob>

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 13:01:23

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

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.

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.

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 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.

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.

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.

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.

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!

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.

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

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

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.

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