Are there any Coeliacs who had negative results from the blood test?

oopsadaisydoddle

Hi,

I Was diagnosed with IBS last year due to suffering from a lot of bloating and wind(!). I kind of put up with it because I was overweight and thought that probably made it worse.

At the beginning of the year I lost 2 and half stone doing the Cambridge Plan. When I reintroduced food (which I did gradually), I ended up with the symptoms again. I am constantly tired. I can't remember the last time I woke up feeling like I had actually been to sleep. I have dark circles under my eyes. My hair isn't great and I still suffer from wind and bloating no matter what I eat.

My GP referred me to have bloods done as he suspected possible coeliac disease. All of the results have come back clear. My sister also had clear blood results and then went on to have further testing and she did have coeliacs. I'm so fed up of feeling rubbish all of the time. The only time I didn't was when I was doing Cambridge and coincidentally all of the products I used of theirs were gluten free!

I just wondered if anyone has had similar experiences? No matter what I eat I feel rubbish!!

Thanks in advance!x

floss2

Have you been back to your GP to discuss the results & your continued symptoms? Perhaps they need to refer you to the local specialist for more detailed tests.

oopsadaisydoddle

floss2 wrote: »

Have you been back to your GP to discuss the results & your continued symptoms? Perhaps they need to refer you to the local specialist for more detailed tests.

I haven't been back because my GP basically said if the bloods come back clear then I've to go back to Cambridge and reintroduce foods to see what affects me!!!! This is from a GP who didn't want me to go on Cambridge in the first place!

I dread going back to see him because sometimes he can be great and sometimes he just says 'no'. E.g. I suffer from acne and need some more cream and when I asked he just said 'no, you don't use it enough'. I do actually use the stuff every day (just a tiny amount and on a small area) so my prescription lasts forever. Anyway last time I ran out I thought I'd go it alone so didn't request another script and now I'm on antibiotics for my spots!

I have private health care through work and they would investigate for me but they need a referral from my GP and i dread asking him.

I also hate going because after having DS 3 yrs ago, I suffered from health anxiety and was there all of the time. My anxiety and depression have gone so I know my physical symptoms aren't due to this. I'm the first to admit when I feel depressed and have no qualms about that.

Sorry for my life story - thought it might be relevant!!

floss2

Why not ask to see a different dr if possible, and ask for the referral to your private health care?

oopsadaisydoddle

floss2 wrote: »

Why not ask to see a different dr if possible, and ask for the referral to your private health care?

Thanks for replying. They don't let you see a different doc unless yours is away from surgery. I think I might have to go and bite the bullet so to speak and ask for the referral. In some ways, I kind of want there to be a reason I feel like this so at least I can start to put it right.

I just wondered if anyone had experienced similar.

soolin

the blood tests are not 100% and you are not classed as a coeliac unless you are biopsy diagnosed. So it would seem logical that if you are not a coeliac for gf prescription purposes base d on blood tests alone, then the blood tests are not good enough. They are more likely to show a false positive though than a false negative.

However without straying into medical advice might I suggest you contact the coeliac society and ask for their advice about seeking a second opinion. If you truly believe this is a possibility then you need a biopsy.

One last thing though, if you had the blood test after being gluten free it would give a negative result. As a coeliac myself if I stick to a gf diet even my biopsies give a false positive.

oopsadaisydoddle

soolin wrote: »

the blood tests are not 100% and you are not classed as a coeliac unless you are biopsy diagnosed. So it would seem logical that if you are not a coeliac for gf prescription purposes base d on blood tests alone, then the blood tests are not good enough. They are more likely to show a false positive though than a false negative.

However without straying into medical advice might I suggest you contact the coeliac society and ask for their advice about seeking a second opinion. If you truly believe this is a possibility then you need a biopsy.

One last thing though, if you had the blood test after being gluten free it would give a negative result. As a coeliac myself if I stick to a gf diet even my biopsies give a false positive.

Thank you! I don't know for definite that it is Coeliac. It could be anything I suppose...it just seems coincidental that I have a lot of the same symptoms as my sister. I've read in a few places that the blood test is not accurate but don't like to trust Dr Google so that's why I thought I'd ask for help here!

I suppose I would just like to explore all options to see if I can help myself to feel better. My son's childminder was referred to dietician with similar problems and she went on an exclusion diet to find out the culprits. I don't really want to start anything like this without expert advice.

My sister really had to fight for the referral for biopsy and it was only after this she was diagnosed. I was diagnosed with polycystic ovaries a decade ago and I know this in itself can cause some problems. I also know there's a possibility that nothing at all specific will be found and it could just be IBS. I suppose I just want to know where to start with finding out.

I have a look at the Coeliac Society and see what they say.

Thanks for taking the time to reply.

skypie123_2

It's fairly well known that the test isn't always accurate and you are supposed to eat lots of gluten laden foods etc for at least 6 weeks before the test (which generally makes you feel like death for all that time!)
I haven't had the test but I strongly feel like I'm Coeliac. I just eat gluten free as much as poss

soolin

Again without breaking MSE rules about medical advice I would just mention that I was virtually unsymptomatic before diagnosis. I was a little underweight , but many people pre diagnosis are positively skeleton like , and I had no real stomach issues. So it really is worth ruling out things in order to get a better diagnosis long term.

Good luck with the coeliac society , hopefully they can offer some advice about how to approach a GP to get a biopsy.

oopsadaisydoddle

Thanks again for the replies. I didn't realise there were rules re medical info! Sorry!

I've contacted the Coeliac Society by their contact form so hopefully they may have some advice.

2tonsils

Don't give up the search for what is wrong...it took me four years to 'prove' I was celiac..before that they blamed everything from my age to my imagination. Depression and anxiety can be caused by gluten intolerence and the skin problems certainly can. I live in Greece and if you have a close relative they will do DNA tests to see if you have the gene for celiac disease.
Mine was confirmed by the endocrinologist when I went along complaining about my thyroid..he confirmed I had Hashimoto's thyroid which is another auto immune disorder like celiac disease.

The blood test antibodies were off the scale and he made me come off gluten immediately. They did not let me do the biopsy as I have a true allergy to wheat and had anaphalactic shock due to trying to eat it for a test.

Please don't give up trying to find out. I feel amazing now I am gluten free.