Coeliac

[corsaUMM]

I have have had blood test and the reading came back at 19.

I have to have an endoscopic biopsy. Meanwhile don,t wish to eat gluten . However I am told I must for true test. It could be weeks before I get appt any advice on what I can do in the meantime. I am fed up of pain and bloating. Help please

[Hidden]

Hi corsalUMM, whilst we will all feel empathy with you, you must keep eating gluten until you have had the biopsy. This is because the endoscopy will not be conclusive otherwise, as they will be doing biopsies on your villi to determine CD

So just stick with it and I'd indulge yourself with your favourite foods in the meantime and try and see it as a means to an end. Then if the diagnosis is positive you won't have to touch gluten again...ever.

Good luck and let us know how you get on as you've posted about IBS in the past so this could well be the answer.

[corsaUMM in reply to Hidden]

Have been told I have IBS for 45 years . It is such a weight of my mind knowing it is the gluten because when gluten free fine.

[Regalbirdy]

Hi CorsaUMM,

I agree with Jerry - must stay on the gluten.

I would also add that I was able to shorten my waiting time by shopping around my local hospitals. Like you, I was keen to get answers as fast as possible. By travelling further afield I reckon I speeded things up by about eight weeks.

I stopped eating gluten the day after my endoscopy (ie. after all tests were completed) - I didn't want to wait until I had the official results.

Take care.

[corsaUMM]

Thanks Jerry And Regalbirdy. |I will give it a couple of weeks and then shop around.

[Sachin1234]

For pain I don't know what ur dr advise but to avoid bloat u can figure out googling foods on line .. I used to have list of non bloating foods but I couldn't find rt now .. Too salty too much sugary , wheat product , red meat , Apple , banana , milk , cheese, fried food , olive , beans , legume , humas and many More can bloat fragile people too .. White rice , citrusy fruits , berries, fish , chicken , turkey plain , green mix salad normally won't bloat me .. I hope it helps .. Where do u live ?

[Hidden in reply to Sachin1234]

She has to eat wheat! Otherwisebiopsy may show false negative

[Sachin1234 in reply to Hidden]

I was trying to help her on bloating .. For celiac test I'm sure she has been properly advised from her dr..

[Sachin1234 in reply to Hidden]

Is there a different between celiac and coliac !

[Hidden in reply to Sachin1234]

Celiac is the American spelling. In UK we spell it coeliac.

[Sachin1234 in reply to Hidden]

Thank u ..

[corsaUMM]

Thank you all for your replies. Just have to play the waiting game.

[chocolatetruffle]

My heart goes out to you. I had a coeliac crisis while waiting for my biopsies.....but please stay with it and you'll get answers......take care! You can stop the minute you get your biopsies done

[corsaUMM]

Thank you so much. It is going to be a long time due to waiting list. So have decided to do gluten free for now . I have to see gastro chap first, then have a referral from him for biopsy. So have decided to ease up for the present . Then stuff it down like there's no tomorrow when I know what's happening.I just cannot stand the pain. To be honest blood test was enough for me to know what's happening. All biopsy does is give you certain things on prescription . Well I would rather just buy them and be out of pain.

[Regalbirdy in reply to corsaUMM]

Hi,

Please reconsider! Don't go gluten-free until your biopsies are done! It's not just about having food on prescription, it's much more about having a better standard of long-term medical care because you have a clear diagnosis - i.e. regular blood tests, regular check ups, regular DEXA Scans etc.

I really do get that it's horrible staying on the gluten. It's mentally as well as physically challenging. Everyone here knows how dreadful the waiting is. However my understanding is that it's far, far worse going back on it after being gluten-free for awhile. The pain and the symptoms will be magnified so much more. Are you also aware that you have to include gluten on your diet every day for six weeks minimum prior to a biopsy? (see NICE guidelines CG86 for more info). If you don't, it's likely to lead to a false negative, especially as your blood test result was only 19 (anything over 10 on a tTG Coeliac blood test is considered to be positive). I've said only 19, because to put it into some kind of context; like many others here, my coeliac blood test was 120+ Prior to biopsy.

Try and do your best.

Take Care.

R.B.

[corsaUMM]

Decided to talk wih my GP. Thanks you are a very caring group.B