Does anyone have coeliac disease?

[zonebeuauty]

Hi could you guys tell me the symtoms ,my doctor says I have IBS but I am not convinced.

 

[Dani04]

I only found out last night but I have been looking at some infromation

http://www.nhs.uk/conditions/coeliac-disease/Pages/Introduction.aspx

This might help you a bit

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[Dani04]

I feel sonrubbish just now :-( tired emotional and sore :-(

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[PaulineM-Mobile]

'Chelle brilliant reply x

I was diagnosed with coeliac in Sept 2011.

Took my GP 8 months to sent my IgA blood test away. I was having fortnightly blood tests because my haemoglobin, white cell count and neutrophils were abnormal. Was becoming a bit of a mystery I was feeling so tired (falling asleep if I sat for more than 5 min). I had no gastric symptoms at all. Which i think my have caused a delay in diagnosis.
Anyway endoscopy Sep'11 confirmed coeliac and my life changed for the better, eventually.

I remember at the start I was so overwhelmed. I love food, eating out, cooking, baking. I loved it all. ...... and still do (which says a lot).

Once you figure out your safe foods you will be fine. As others have mentioned eating out can be difficult. Visiting friends, family, social gatherings and special occasions for me are the hardest. It seems to take a lot of time for people to understand.

For breakfast I have Tesco, Asda or Sainsburys own brand CornFlakes or Honey Nut CornFlakes. You get used to them. Yogurts, Toast, Fruit, Eggs.

Lunch - salads, Soups (Homemade), baked potato and filling, (cheese, tuna, chicken, beans etc etc

Dinner - any meat / fish with rice, potatoes, chips ( McCann Gluten Free) all veg. Gluten Free Pasta is fine.

The only missing dinner for me is Pizza. I've never found a suitable substitute.

I steer clear of Gluten Free ready meals - so expensive and not so tasty.

Things I couldn't do without

Glutafin Fibre Sliced Loaf (on prescription)

Glutafin Fresh White Sliced Loaf (on prescription)

Sainsburys Taste the difference Toulouse style sausage

Kettle Chips (naughty!!)

NO Wheat chocolate & orange wafer bars - 85p (for 5 pack) from Tesco (All other Supermarket Gluten Free biscuits and cakes are a rip off)

The rest is just sensible eating.

I make a lovely pistachio nut cake or chocolate cake for special occasions if you would like the recipe just PM me.

Wishing you the very best of luck.

Give yourself time to heal. Look after yourself.

Pauline x

 

[BexiJane]

I've been diagnosed as coeliac for nearly 10 years now,and the difference in the things you can buy are amazing! Just takes time getting used to what you can/can't have.

I had a treat last night....Domino's gluten free pizza!!!!! AMAZING! 10 years without pizza and it was the best thing I've ever tasted! Even the other half said it was pretty good which is high praise. Just be careful what topping you have as they're not all gf.

I promise you'll be ok,just takes a little while to get your head round. I still sit and cry sometimes cuz i hate not being able to have a biscuit with the girls at work,but it does get easier. Give it a few weeks and you'll feel amazing,sore tummy will be a thing of the past!xxxx

 

[Dani04]

Thanks guys. I just feel at an all time low just now I couldnt stop crying today:-( I'm so tired ans cant get comfy. And I am getting more tests done :-( they want ro test my liver and do an all round blood test, is that normal for a coeliac?

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[zonebeuauty]

Dani I took a look at the NHS site....
I have most of the symtoms including hair loss!!!!...the only symtom I don't have(is whight loss) only one I wish I did have
Going to book appointment at docs and see my out come,thanks for this thread its helped me a lot .

 

[PaulineM-Mobile]

Hi Dani, repeat tests are normal. They will want to check you over. To make sure they catch up with any deficiencies the coeliacs has caused. You should also get a Dexa Scan. (Bone Scan- very quick painless scan of your bones detects osteoporosis, if your <35 unlikely to have any problems. Make sure you now get enough Vit D and Calcium.

Have you had endoscopy yet? Don't go Gluten Free until you have this. (They are unable to detect Coeliac if you go Gluten Free before hand)
I went Gluten Free the minute I walked out recovery.

Stay strong. Things can only get better. You know now what's going on and you know what to do about it. It took me a few months to get away from the "why me" feeling, even though you know there are all lot worse things can happen. It's just the psychology of having an illness/disease. It soon passes and life largely resumes as it did before, except you'll feel stronger and mentally sharper too.

Good Luck Pauline xx big hugs xx

 

[Dani04]

Yeah i have to keep eating gluten found this out yesterday. I cant even eat never mind face myself to eat gluten. Since friday i have had 6 strawberries a yogurt(gf) and last night I managed some chicken. But the doc says if I dont eat gluten it is going to manipulate my test results. I just cant go through the pain anymore :-(. I am only 20 they havent mention that scan to me yet maybe I should bring it up when i go for my review in 2 weeks. All my test are a week tomorrow 8 more days of earing gluten :-(. I know from what everyone is saying I will probably feel so much better I just wish I felt better now. I dont even feel up to working :-( I also have trapped wind in my shoulder and rib (right hand side) and cant get rid of it I was hoping the doc would have helped but he never. Any suggestions on bringing this up?

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[waffle4]

For your trapped wind try drinking warm schweppes peppermint cordial (buy it in tescos or off licences). This really does help. Hope you feel better soon x

 

[Dani04]

Thank you i will pop out and get some

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[hayhay]

My 3 year old son has coeliac disease and thw doc said hes of the scale. He was diagnosed at 1. You wiuldbt kbow any different 2 years on. I an so used to scanning backs of products as whether they are suitable. And thank heavens for Warburton gluten free! Not cakey not thick! I hace an amazing cake recipe if anyone needs it, noone has been able to tell the difference ;-) x

 

['chelle]

Yeah i have to keep eating gluten found this out yesterday. I cant even eat never mind face myself to eat gluten. Since friday i have had 6 strawberries a yogurt(gf) and last night I managed some chicken. But the doc says if I dont eat gluten it is going to manipulate my test results. I just cant go through the pain anymore :-(. I am only 20 they havent mention that scan to me yet maybe I should bring it up when i go for my review in 2 weeks. All my test are a week tomorrow 8 more days of earing gluten :-(. I know from what everyone is saying I will probably feel so much better I just wish I felt better now. I dont even feel up to working :-( I also have trapped wind in my shoulder and rib (right hand side) and cant get rid of it I was hoping the doc would have helped but he never. Any suggestions on bringing this up?

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hiya honey, so sorry you're feeling crap, but the doctors are right, if you cut gluten out now it will affect your endoscopy results. Stick with it, it will be worth it in the end, and if its any consolation my other half started to feel better within 24 hours of going gluten free so it wont take long.

That feeling of trapped wind/lots of wind is really common for some coeliacs, my husband gets it really bad, and when it does come up it burns. You can have gaviscon for it, and my husband gets some tablets on prescription called lansoprazole which really help with these symptoms so perhaps go to your doctor and see if you can get something like this to help until you have your tests.

The ongoing tests are normal, you will have regular blood tests and bone density scans (when I say regular it might be fairly regular at first but should settle down to about once a year), but its nothing invasive or painful, you'll be fine.

Just struggle through this next week, I know its crap but it will be worth it, and your doctor might be able to give you something to help in the meantime x

 

[Dani04]

Thank you. I have decides if I am going to have to suffer I am going to eat my favourite gluten food before I cant ( i say that but I still havent ate anything today :-( ) i feel when I mention it to people anyone who has it is so helpful. I guess at this stage everyone needs the support

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[Lauren121]

Just bumping this thread as I've just found out too my symptoms aren't that bad tbh it's just going to the toilet more often than normal so I'm quiet lucky really! Any one else got anymore info ?

 

[smallandcute]

My mum does and it was so bad before she was diagnosed that it caused her to become allergic to dairy as well. And due to her body not absorbing essentail nutrients from the allergy her teeth are all fractured and her bones are breaking easily. Also they have found this is the cause for her thyroid not functioning, its improved dramatically since she has stopped having fliten products and she should be off the thyroxine completely in the next couple of months.

 

[Lauren121]

That's good! My sister cut gluten out as the doctor said this could be the case but her blood tests came back negative where as mine came back with a normality and went for the camera! She was fine for a while and now she's back to square one again even tho she's eating gluten free! Might be something else like your mum then! Glad she's getting better!

 

[littlefairy]

Hey,
sorry to hear about this :-(
I studied coeliac disease for an assignment and its a lot easier than it seems. There's a fantastic website and support from coeliac uk. They have shopping lists, what you can and cannot eat and you can call them too, it seemed really informative. heres a link x
https://www.coeliac.org.uk/coeliac-disease/once-youre-diagnosed/

 

[Lauren121]

Thank you! X

 

[LouisaB]

I hope no one minds me opening this up again. I have been diagnosed with bad IBS but I definitely feel it's more than that. I either have to go to the loo loads or not at all, I've had blood and mucas (sorry!) my stomach is always bloated, I feel horrific after certain foods to the point where I can't move how often did you keep going to the doctors to get a good diagnosis? I tried cutting gluten and it seems to be helping a bit