Diagnosed as Celiac - now what?
Posted , 3 users are following.
I had my appointment with the consultant today following in from the biopsy two weeks ago and he confirmed that as expected I have Coeliac Disease. He said that this was as expected from my abnormally high blood test results. Whilst it is good to have a diagnosis I am left feeling what now? He told me to stick to a gluten free diet for the rest of my life and no need to see a dietician. Apparently my GP will request a bone density scan and also he told me to get my two children tested.
For all of you who are experienced any advice and tips for a newbie as it seems pretty daunting.
0 likes, 6 replies
chutney123 Pinkythefairie
Posted
Hi Pinky,
Welcome to the coeliac club. First place to look for advice and information is the coeliac UK website. You can also speak to your gp and I am sure they would refer you to a dietician as well. All my follow up following diagnosis was with the dieticians, I never saw a gastroenterologist. I had a DEXA scan too, for me it was just as a baseline and the dieticians said to repeat in 5 years.
I was diagnosed through screening after my sister was diagnosed, apparently there is a 1 in 10 chance of close family having it too which is why they have suggested screening your children. My brother and parents don't have it.
I am also one of the lucky ones who don't react if I accidentally eat a bit of gluten, I did have some signs such as tiredness which did improve.
In terms of what you can eat have a look at coeliac UK, in the EU all allergens are in bold on packets and you can't have wheat, barley, and rye. Oats are gluten free but often contaminated so you need the gf ones, and some people do cross react. Barley malt extract is generally OK as there is so little gluten. Depending on how sensitive you are you might need to watch for contamination at home, sharing toasters etc but I do it all the time! I lost quite a lot of weight initially after diagnosis, mainly because I didn't what to eat gluten free things but apparently most people gain weight as they start absorbing stuff properly.
I know it's overwhelming to start with, you will soon get the hang of it and start feeling better. I love to bake and my dad said my gf Victoria sponge is the best he has ever eaten even better than the ones with gluten in!
Chutney xx
Pinkythefairie chutney123
Posted
hi Chutney, thanks for all your advice. i have joined Coeliac UK as suggested which looks like a great resource.
Me and my little girl love baking so will be trying lots of gluten free cakes.
i tend to make most meals from scratch so hopefully can just sub for gluten free ingredients like stock and soy sauce.
just bought a free things like cereal bread etc - its so expensive isn't it
sam18386 Pinkythefairie
Posted
hi pinky, i realise you have just been diagnosed coeliac. if you speak to your doctors you'll discover you can get your bread free on prescription, you can get 8 units which your chemist will take, if you are lucky my chemist will swap bread for pasta and biscuits or vacuum packed longer lasting bread. if you get the chance look out for a company called juvela who have free offers of things to try, they feature on the coeliac uk site. try it you never know it could get you some free things. just a suggestion, oh the prescriptions are free by the way, you have an autoimmune condition. good luck, where do you live? just wondering i'm in leicester in the midlands.
chutney123 Pinkythefairie
Posted
Hi Pinky,
It is much more expensive, I do get some flour on prescription but I think it is pretty variable depending on area as to what the NHS allows you. Do you have a local lidl? They tend to have some gf bread and their biscuits are really good.
If you are a baker then the river cottage gluten free book is a good one, but it does use loads of different flours. Main problem with baking is cakes can get a bit dry/crumbly, things like banana bread and carrot cake work really well just by switching the flour for gf.
Chutney xx
sam18386 Pinkythefairie
Posted
hi pinky, yippee! you must be relieved as to what this is? it's a shock i know, because you feel set adrift. my diagnosis made me cry. i had finally discovered what this was, i spent years battling for a diagnosis, a second opinion just anything to explain i was so sick! i am struggling to know what eat still, the meat and fish eaters think 'oh well i can eat more now'. i am vegetarian, i may have a bean and pulse allergy and have to be so careful, i haven't lost weight either or gained it. it's made me realise i have to cook to survive. i hope you get on ok, it's tough but coeliac uk are fabulous! you must join them. i have rang them a few times, i have to say. the supermarkets are great though now, at least there is a variety of stuff you can have. good luck, i am sure you'll cope better than me. at least you now know.
Pinkythefairie sam18386
Posted
Hi Sam,
Yes it’s weird finally getting a diagnosis and when the idea of coeliac disease hasn’t even crossed my mind until the doctor told me that blood tests were positive as I didn’t know he was testing for it. At least how I may start to feel alive and like myself. Usually I’m very sporty but haven’t had any energy since the end of June. Yes being vegetarian must make it harder (I was veggie for 26 years). Are you starting to feel better?