Hi people, can anyone who has had a test for coeliac disease help? I have had a positive blood test come back to my doctor's after being told to eat more gluten then i am told not to have it by my doctor, another told me to have it, someone else said no another person said yes and my consultant says yes. W.T.F? I apologize for saying that! What is the TRUTH??? Did i do right to tell my doctor the test last year may be incorrect? The dietitian didn't tell my doctor this, then i get a vile message back today virtually saying i can't have more advice? Do you have to put up with rudeness if you have a health condition? I actually give a damn about my health. I'd just like to be WELL!!!!! Is that too much to ask? It made me cry. That's good isn't it. Make a already scared patient even worse. Please SOMEONE ANYONE WHAT is the TRUTH? Thanks (before i go out of my mind!!!)
Hi Sam, i know your confusion. Evidentally some of these tests come back false positive and false negative for various reasons. There are different tests also and a lot of strings attached. Mine came back negative but the notes on the test and the doctor told me I would have to repeat tests later. There are way too many uncertainties. Very frustrating.
Hi Sam, i know your confusion. Evidentally some of these tests come back false positive and false negative for various reasons. There are different tests also and a lot of strings attached. Mine came back negative but the notes on the test and the doctor told me I would have to repeat tests later. There are way too many uncertainties. Very frustrating.
Thank goodness, someone who understands me. That’s why i want confirmation, i am speaking to a totally different doctor tomorrow shall j tell him everything or will i make it worse!
They usually tell me to avoid gluten but I already have done so for years because of my ibs. The doctors back then couldn’t be sure and offered no way of precise testing. It was by trial and error. These days have not seemed to have offered any better specific answers either. Coeliac disease can be very dangerous if one keeps eating gluten so we need to have more improvement in accurate testing.
The celiac blood test is not always accurate but endoscopies are accurate at identifying it because biopsies are taken. That’s why if your blood test is negative, but your doctor thinks you have it, an endoscopy is done to confirm it. My celiac blood test was negative and this was correct. Hopefully, a different doctor will solve the confusion.
You have to eat gluten containing foods for weeks before the blood test as it is testing for a REACTION to gluten. So if you cut it out, then you can get a false negative.
If the blood test is positive then the next step is an endoscopy. Carry on eating gluten containing foods until til is completed so the can see if your body is reacting or not.
Hi leenipie, thank goodness for this site! Finally that sounds like a clear response! I think i’ll follow that advice. I’ll let you know how i get on, they’re going to trace the notes and try to find out when my test is. All i wanted was truth, i was told so many different things!
Hi Pippa, the confusion has arose from the dietitian service, my blood came back at 127, apparently that’s very raised. The dietitian service told me to CUT all GLUTEN out? Now do you see why i’m confused! Thanks so much, i’ll let you know how i get on.
Precisely, my doctor wanted to leave the camera (the original doctor/ as she thought s blood test was enough to tell i had coeliac disease but i want it and am not scared as she presumed. I couldn’t swallow the camera without a general and tried 3 times. My bowel won’t work. I need to know why. That’s all.
I understand your confusion and frustration but I think it would help if you could calm down a bit.
I know that is easier said than done but worrying is not going to help you at all.
Yes you want answers but you are not going to get them unless you can calm down.
This does not mean you cannot have your say.
Hope you get he answers you want.
Take care and keep in touch
Sarah
If you are awaiting another celiac test, you will need to keep eating gluten so that the test is accurate. Hopefully, you will get definite answers soon.
Hi Sarah, i have been really patient i think - i have had this diagnosed for over 10 years, i just would like to know what is wrong once and for all. I do get upset yes but it’s my health! If you don’t have your health you don’t have much do you?
Hi people who replied on here. Just a quick update - someone has finally read my notes correctly and realized i should definitely have gluten in my diet before this test! It’s not difficult in this day and age as a health professional to read through notes to make it clear what a patient must do before such a test! I can’t believe I’ve been given such advice which was definitely mixed! I’m not the most delighted but know i may probably have more like the truth. So confusing. Notes should really say further investigations needed? Wouldn’t that make it simple?