Coeliac disease: Hi I’m new here, I have just... - Pain Concern

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Coeliac disease

Steph2345 profile image
7 Replies

Hi I’m new here, I have just found out I have coeliac disease been in pain for 4 years with it please can I have abit more information on what sort of foods to eat and what not to eat

Thanks Steph x

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Steph2345 profile image
Steph2345
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7 Replies
Rosepetal60 profile image
Rosepetal60

Hello and welcome, there’s a Coeliac forum here on Healthunlocked called Gluten Free Guerrillas . Lots of useful and interesting information on there. To find it, look on the bar above your post and click on “ my hub” on that page, you’ll see find a Community. Type in the title etc and it should come up .

Steph2345 profile image
Steph2345 in reply toRosepetal60

Thankyou x

Imagine1 profile image
Imagine1

Hi Steph, I am so sorry that you are ill with Coelic disease. When you was diagnosed did the doctor advise you on anything at all, including what you can and can't eat, if not they should have done. I have all the symptoms of the same illness but I have not got it. I have Diverticulosis. I found out by accident recently. I was never told about it. which is shocking. Find out as much as you can about this illness. I am sorry I can't be much more help for you.

Steph2345 profile image
Steph2345 in reply toImagine1

Hey, I’ve been suffering with it for 4 years every since I had a postpartum haemorrhage with my daughter when I gave birth, but they seem to think I’ve had it ever since I was little and now all the pains and crams and all sorts I get it absolutely shocking they haven’t gave me no pain relief or nothing, he/my doctor never told me not nothing just basically telling me I had it and referring me to see a specialist, I have an appointment with the nurse to examine me tomorrow make sure I have no lumps or bumps in my groin, cause I spoken to the nurse and she basically sent me a link to the nhs website and told me to start a gluten free diet now so when I see the physiologist I can basically tell them how it’s been since starting a gluten free diet. Since I have started a gluten free diet though I ain’t in pain as bad as I was when I was eating stuff with gluten in x

Imagine1 profile image
Imagine1 in reply toSteph2345

Hi Steph. You have been treated appallingly. I would report this, no one should be treated in this way. I also have had many dealings with the NHS and I am taking them to court. If a Gluten Free diet is helping you I would carry on doing this. I know there are a lot of Gluten Free food in Asda, It is a bit more expensive but it will be worth it if it makes you feel a bit better. I hope you get the treatment you deserve, keep on at them until you do, in the meantime I would definitely report them. Take care of yourself.

Steph2345 profile image
Steph2345 in reply toImagine1

No I haven’t been treated, I got examines today and she’s checking me out and I told her I had a pain in my right ride she’s stood there pressing if she’s like does that hurt I goes yeah it hurts she says when I press or take it away I said both she was like oh well at least it’s not the appendicitis. Then I asks her if she can put me on any fort of paracetamol to ease the pain abit as I’m in a lot of pain and struggling to sleep at night oh she won’t give me anything other than tell me to take paracetamol like I haven’t already tried that for the past 4 and a half year 🤦🏼‍♀️ Honest to go’s and I honest do not blame you at all! I hope you do get sorted though as it’s took me 4 and a half year and still doesn’t seem like I’m getting any closer

Imagine1 profile image
Imagine1 in reply toSteph2345

Hi Steph. I feel so sorry for you, with what you have told me I would definitely make a formal complaint, it just isn't right. You should be treated with kindness and respect. In this day and age you don't get that. People have told me about PALS who work at hospitals but are independent, they don't side with the hospital. They didn't help me at all, but other people seem to think they are okay. I hope you get sorted out and let me know what you intend to do.

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