Do you think my coeliac blood test could come back negative?

[Layla.I]

Hi,  I'm from the UK and suspect I have the same probs as everyone here. I went for my blood test on Tuesday which was arranged quickly. I had been constantly eating gluten loaded foods until 6 days before the test, I stopped for 3 days because I had an allergic reaction to something, started to swell up (face/lips) not sure what, think I'm allergic to milk like my brother amongst other things, so I stuck to bland veggies etc. When the test was arranged to check if I am a coeliac at short notice  I then ate loads of gluten loaded food again for 3 days just before the test. (I truly believe I am a coeliac) . The day of the test I felt fine but 12 hours after my blood was taken I ended up bedridden as usual. I'd hate to think those 3 days off (which made me feel better) will give me a negative result. I'm booked for a biopsy but its 2 months away. I seriously cant eat any grains from now until then . I refuse to, I become too unwell that I cant function at all. I just cant and wont do it!!! 

Its rotten isn't it, feeling so damn awful all the time. I'm at the end of my rope . Would a biopsy still show damage in a few months? Even if I've now decided to go gluten free? 

Lastly, can you be allergic to wheat and also be coeliac? I think this is what I could be. I've suddenly become allergic to everything. it's scary swelling up after consuming lots of different things!!! Nightmare!! Lol. 

Any thoughts or advice ? From people that really understand what I'm going through .......

Layla.

P.s this website has been super helpful and informative and i cannot thank you enough!! Godsend!  

[trents]

Welcome to the forum, Layla!

I doubt if three days off of gluten in proximity to your blood test will make much difference. Actually, the gluten challenge for the serum antibody test is approximately two months whereas the gluten challenge leading up to an endoscopy/biopsy is two weeks. So, the blood antibody test is less affected by short term variations in gluten consumption than is the biopsy. But you should still be on regular amounts of gluten for at least the challenge period leading up to either test. Many make the mistake of going gluten free before testing.

Yes, you could be both a celiac and be allergic to wheat at the same time. Many or most celiacs eventually develop intolerances to other non gluten foods such as dairy, eggs, corn and soy. Sometimes you can go back to dairy without any problem (at least a limited amount) after you have been gluten free for a period of time and experienced full healing of the small bowel villi.

[cristiana]

Hiya Layla

I totally agree with Trents.   

Let us know how you get on.   If the test does come back strongly indicative of coeliac disease talk to your GP about whether you actually need to have the endoscopy.  An endoscopy was always viewed as the gold standard way of diagnosing coeliac disease in adults in this country (I too am in the UK), but reading posts on this forum over the last 18 months it seems that the British position may have been changing on this i.e. if the blood test was strongly indicative, it isn't necessary.  But this stance may have been adopted purely because of pressure on the NHS due to Covid, and may no longer be the case?  It is worth checking, in any case.

Take care and I do hope you are feeling better soon,

Cristiana

Edited August 6, 2021 by cristiana

[Layla.I]

Thank you so much both of you!! That's really helpful and has definitely put my mind at rest a bit. 

I get my results from the test next week. 

Thanks again.

[cristiana]

You are very welcome, Layla.

One more thought... once you know where you are with gluten there may be one other thing worth considering, if you find you are still reacting to a lot of seemingly random things.  A friend of mine was reacting to so many different foods she went for skin patch allergy testing, some private doctor in Surrey, and he identified she had an issue with yeast.  It has been very helpful to find this out and now although her diet is somewhat restricted she is doing so much better.   

[Layla.I]

Thanks. I'm from Surrey so good to know theres somewhere local to go. I also think I have a problem with yeast. It's the first of all the things I believe I reacted to. 

My mum is also allergic to just about everything and she only discovered the extent of her allergies by getting tested years ago by a patch test. 

I think it's a good idea to have one done. Thanks again for being so helpful! Much appreciated. 

[cristiana]

38 minutes ago, Layla.I said:

Thanks. I'm from Surrey so good to know theres somewhere local to go. I also think I have a problem with yeast. It's the first of all the things I believe I reacted to. 

My mum is also allergic to just about everything and she only discovered the extent of her allergies by getting tested years ago by a patch test. 

I think it's a good idea to have one done. Thanks again for being so helpful! Much appreciated. 

Hi Layla

Once you've ruled in/out coeliac, should you need the doctor's details send me a message and I'll find out his name and where he practises.   I think it cost a few hundred pounds but trying to get this done on the NHS may be quite difficult- but of course, do try that first!

Cristiana

 

[Layla.I]

Thanks!! Will do!!

Cheers.

Layla.