Negative coeliac test results

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Hi everyone! I've just found this forum and am excited to possibly be able to talk to some people who can empathise with my symptoms!

I have just had a negative blood result for coeliac and have been told categorically that I don't have cd. But I have so many symptoms (listed below) that I am suspicious that the result was wrong. I am seeing the dr again next week and am going to ask for the biopsy.

In your opinion how often does blood test show a false negative and is a biopsy likely to be a false negative too?

My symptoms have all been present for at least 5 years but some for up to 20 years.(I'm 35 by the way!)

Chronic fatigue (I sleep all night plus at least 4 hours in the day and still feel exhausted)

Pain in my joints especially hands, legs , hips and shoulders.

Ibs and vomiting.( black and foul smelling stools)

Restless legs

Bad skin but not the blistering

Brittle nails

Ear infections

B12 deficient

Anaemic

I'd be really grateful for any comments you may have!

Thanks

Sarah

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  • Posted

    Hi - not sure of the medical answer to your question but I had two biopsies and one blood test come back negative. I was diagnosed as a coeliac from a capsule endoscopy as the damage to my bowel was lower than a biopsy could get to. Also diagnosed by separate dr with dermatitis herpetiformis.

    I have pernicious anaemia and also Hashimotos diagnosed with blood tests.....

    Don't give up.....

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  • Posted

    Oh that's interesting. I have been referred to a gastroenterologist in December so hopefully they'll help. How did you convince them to do more tests when your first biopsy was negative? Did you go private?
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  • Posted

    Hi Sarahr78

    Blood test is far from reliable.

    Did you eat significant amounts of gluten for 6 weeks before the blood test ?

    http://www.coeliac.ie/coeliac_disease/getting_diagnosed

    Is pretty good on the topic

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  • Posted

    Yes unfortunately had no choice as the NHS was not finding the answer - my mouth was literally peeling away from blistering inside and I could not leave it... I have lost so much skin there now that the NHS has offered a skin graft!! All ok now though with dapsone for dermatitis herpetiformis...

    I did get both the first blood test and the first endoscopy via the NHS and when they were negative they had no further suggestions for the way forward....

    I found the way forward by trial and error really as I consulted someone private for a full auto immune scree band the anaemia....

    I think my situation is quite rare but it can happen as I now know....

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  • Posted

    Oh Karen, that sounds awful. You have my sympathies. The main problem for me is the fatigue. I am so tired that I sleep from about 10pm until about 2pm the following day. Its so awful and really depressing being at home and in the bedroom all the time. I'm taking iron tablets but they don't seem to be doing anything to help. I hope that the gastroenterologist can help but I am feeling very hopeless at the moment.
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  • Posted

    I get the hopeless and remember having similar feelings during my diagnosis process which felt like it lasted forever!! Tiredness can still be a real issue for me…. A couple of things I would mention are….. You say you are B12 deficient but you do not mention pernicious anaemia - have you been tested for it - If the bowel is damaged it does not produce intrinsic factor which allows the body to use B12. If you are in this place then B12 injections are necessary as this is arguably the only form that your body will be able to use. It is a simple intrinsic factor blood test…. results can be variable but if you get one test that says this is wrong then according to my haematologist this means that you have pernicious anaemia and will need lifetime injections. NHS does a few of these to load the body to start with and then one every three months afterwards. Have you had your vitamin D levels tested? Mine have become deficient and this was adding hugely to my tiredness - again its a blood test? Thats tablets to start with if you are. Thirdly have you had your thyroid tested at all? Coeliac Disease which you may or may not have has quite close links with thyroid issues and again this can cause tiredness. Its a blood test and then different actions depending on under active or over active….. Sorry I know that's a very long list but it was hugely helpful to me as these problems all got sorted and the blood tests are no issue? There are other things that impact on this that need to be right but to be honest in all of my reading some of that stuff goes over my head - there is info here and elsewhere though re folic acid levels, potassium etc….
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  • Posted

    Ooh Karen! That's a lot of info!! But I'm very grateful for it and I'll spend some time absorbing it tomorrow. Thanks very much.
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  • Posted

    This might help you feel better because you'll see that there are lots of us in the same position, neg bloods and neg gastroscopy. http://members2.boardhost.com/glutenfree Its just a discussion group of coeliacs, some diagnosed, some not, who get together to chat and swop ideas and moans etc.

    After more than 10 years suffering, and after negative tests I just decided to put myself on a gluten free diet and I've never looked back. Do understand this is NOT recommended by doctors, as if you have to have any more tests in the future you'll have to go back to eating gluten for at least 2 months prior to your tests, and you'll find your reactions are more extreme than they are now. I just got fed up of feeling rubbish I self diagnosed and changed my diet - please note I have no medical knowledge and your gp will not be happy with you.

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  • Posted

    People who suffer from coeliac disease often become deficient in vitamins and minerals especially magnesium which affects sleep. (Some symptoms are restless legs and/or grinding of teeth.) Also calcium helps .. especially if suffering from sleep apnoea and another tip is to tape your mouth shut with paper tape so that you breathe through your nose.
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  • Posted

    Rex is right - see above! Have you been checked for anaemia (iron levels)? I was down to blood transfusion level by the time I found a GP who would listen to me! All your symptoms are similar to Coeliac Disease - did you ensure you were eating gluten containing food every day for at least 6 weeks before the blood test? If not it would be likely to come back Negative. You have to eat plenty of gluten for the antibodies to it to show up in your blood test - this is very important. There is also another blood test available these days which your GP should offer you - as well as an endoscopy biopsy which is the most likely to give you the correct result. Go to the Coeliac Org UK website and read up on the condition there - and get more info from them via their Talk To Us link if needed. Persevere for a correct diagnosis.

    Do not go gluten free until you have been tested - this is not just an allergy it is an autoimmune condition and can have serious consequences if not medically noted. GP needs to have it on your Medical Record for the sake of your future health....take note all self diagnosers....go back to the GP! For the sake of your future health...eat gluten for 6 weeks...it is worth it.

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  • Posted

    Defo get vit D levels checked - I've been off sick nearly 2 months with it and still cant believe it !

    You will need prescribed supplements if you are deficient and it takes a while to get back to normal - as I can testify !!

    Like you I tested negative for coeliac but am not convinced ...

    All the best anyway - it is a very hard journey ...

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  • Posted

    And keep getting checked bettyboop4....because if the levels do not go up substantially it could be because you are not absorbing it because your gut is damaged (as in Coeliac disease!). I was anaemic when pregnant (many years ago - pre coeliac diagnosis) and had iron injections for months...when I asked the midwife if the levels were improved - just prior to my delivery date - she said "No...not really... to be honest"...but no-one ever followed that up...that is why Coeliacs are so deficient in many vitamins and minerals when finally diagnosed! Hence fatigue, pain, and danger of serious consequences ....no-one can live indefinitely without iron etc....

    If you are an undiagnosed Coeliac the villi - little hairs - in your small intestine pull back into the gut lining as a reaction to gluten...and it is these little hairs which absorb the nutrients you need....once on a totally gluten free diet the hairs come back ...gradually....and you get better. Just how much better depends on how damaged it has been and if it is able to recover well. Never hurts to go back and request another blood test - or endoscopy biopsy....providing you are still eating gluten containing food on a daily basis. Otherwise you will get another Negative result. The antibodies to gluten need to show up in your blood stream for an accurate diagnosis. Many folk get Negatives because they have been cutting out gluten themselves to try and get better....so it is a vicious circle. Unfortunately you need to be eating plenty of it for at least 6 weeks before a blood test....no other way. .Good Luck all!

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  • Posted

    I was diagnosed eventually in 2003 after years of feeling like crap and permantly anemic.they did every test except for coeliac.it was only when a locum dr said that there had to be a reason for my anemia that they straight away put the tube down my throat.even though I follow a strict g/f diet also dairy and soya free I still have to take iron tablets daily or my levels drop.i am so glad that locum was in that day.dont give up until you get an answer
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  • Posted

    Hi, I've had a negative test result for coeliac and the Dr I went to see said that this was for life... I've read that 86% of people with coeliac have been wrongly diagnosed or don't know they have it, so I'm slightly concerned.

    I've been having the symptoms for about a year now or possibly longer. I've always been thin, but I've noticed since the beginning of the year, I've lost a stone in weight unintentionally in a short space of time and my family and friends have noticed this. I've been experiencing other symptoms such as the bloating, costipation (mostly) and feeling nauseus as well as my hands and knee joints aching. My mother has a thyroid promblem.

    For the past four weeks I have been on a gluten free diet and my symptoms had started to reside. But I have been 'glutened' a couple of times this past week and they symptoms became prominent again with the reappearence of diarrhoea. I ordered a vodka a coke (not knowing vodka contained wheat) and within a few hours I was in pain, feeling sick and bloating out.

    Since receiving the negative result for coeliac, I wonder if this is all in my head or is it just my body telling me gluten is no good for me. I don't know what to do.

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    • Posted

      This isn't entirely true, most gins are okay as you say, but I react badly to the smallest amount of daffys gin which I've learnt uses only wheat grain from France ( not a mix of grains) and distilled differently to other gins. So I think it depends on your sensitivity level

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