Advice on blood test result

[celiac2020]

Hello,

Just wondering if anyone could offer some advice please. I have had a blood test to check for celiac disease a couple of weeks ago which came back at 128 or over as the lab stops measuring at 128. I am due to have biopsy tomorrow to confirm if I do have celiac or not. Would you expect this result to be quite an indicator of celiac disease or could my biopsy show that I don't have it?

Any advice much appreciated x

[Regalbirdy]

Hi,

Your blood test numbers remind me so much of my own when I was going through the same process.

I was told exactly the same thing - that they stopped measuring at 128; and that they didn’t know how far beyond that I actually was. I’m now a diagnosed Coeliac.

Based on my experience, I think you should go expecting to be told that you do have Coeliac Disease (or Celiac Disease to our American friends).

With numbers that high, I suspect you will have some gut damage going on. The biopsies will help to provide more information on that.

Living with Coeliac Disease is fine - and easily controlled if you stick with the gluten-free diet. It’s perhaps a bit confusing for the first few months, but it soon becomes normal.

Make sure you don’t have any unfinished business with gluten containing foods though. Do eat that favourite donut, or have that Mars bar as a snack and that baguette for lunch in the next few days etc. - but only until your diagnosis is confirmed. Then you can start your new life and journey back to better health with fewer regrets.

Good luck tomorrow. The calmer you are able to stay mentally, the easier you’ll find the procedure.

[celiac2020 in reply to Regalbirdy]

Thanks for your advice, it's nice to hear other people's experiences to know that what your thinking is completely normal. Biopsy went fine, just have to wait a few weeks for results now.

Thanks again x

[tinkerbell971]

Hi,

I have recently been diagnosed with coeliac in March and my bloods were the same. My gastroenterologist said he can guarantee that I’ve got coeliac but obviously can’t confirm it until the endoscopy results are back. I had the endoscopy and the doctor who done it said my bowel looked fine but when the biopsies were back it confirmed that I did have coeliac. After speaking to my dietician, she said because my number was so high that it will take a good year or so for it to go back to within a normal range. I was terrified about having to go gluten free but it’s not bad. I do miss the odd takeaway or McDonald’s but I’ve just become more experimental in the kitchen 😂 Good luck!

[celiac2020 in reply to tinkerbell971]

Thank you, I had the biopsy this morn. The consultant didn't give me any idea of what he saw they just said I will need to wait a few weeks for the results.

[Whydothis]

I too had a result of 128 last year, but it wasn't explained to me that this is the highest the test measures, so thank you for that information.

I agree with the other posts - you are almost certain to have the diagnosis confirmed by the biopsy. I decided to start eating gluten free from the moment of coming back from the biopsy. I had a check for bowel cancer at the same time (clear, thank goodness) so I was really hungry with a totally empty gut - and found that when I was offered a sandwich after the procedure, they had nothing gluten free to offer me even though I was there with suspected coeliac. I was not impressed!

[celiac2020 in reply to Whydothis]

Yes it was the dietician who told me about the result only going up to 128 in the lab, so they don't actually know how high the result could have been. I'm going to start eating gluten free straight away and hopefully start to feel better soon.

[Whydothis]

I started to feel better very quickly - I hope it is the same for you.

[celiac2020 in reply to Whydothis]

Really, I do hope so. Thanks