Question: normal coeliac results

[hilly2]

hi i recently had the coeliac antibody test it came back normal but i have strong coeliac symptoms and it was hell doing the gluten challenge i had given up gluten ages before the test so i did a gluten challenge eating 4 slices of bread a day for four weeks prior to the test undwe doctors instruction i have a doctor appointment on monday where do i go from here?

[mitchellbarbara]

go to the dr, get your test, then cut it out for good!!!!!!! at least, that is what I would do...

[tmoxon]

Hi Hilly2

First I would ask the GP exactly what tests you have had. I have copied some information from the CUK website explaining that some people don't make the antibodies required to make a positive test, I would ask your GP for this test.

IgA deficiency

Some people with coeliac disease do not make the usual coeliac disease antibodies. This is called IgA deficiency and so your GP will need to test you differently for the condition. If you have ongoing symptoms that suggest coeliac disease but you have had a negative blood test, then ask your GP to test you for IgA deficiency. NICE have a national guideline on recognition of coeliac disease and recommend that IgG EMA tests should be used in cases of confirmed IgA deficiency.

My daughter has had all of the blood tests and they have all come back negative,however we asked our doctor to refer us to a gastro specialist as she has the symptoms I have. Do you have any family history of CD or autoimmune diseases? If you do this would be more of a reason for the GP to refer you

Hope you have a successful appointment on Monday and you do find a diagnosis, please let us know how you get on

[poing]

If you had non-coeliac gluten sensitivity (NCGS) then this will not show up on the tests for coeliac disease - there will be no TTG antibodies and no villous atrophy on biopsy.

That doesn't mean it isn't real. There have been articles about NCGS recently, including one in the BMJ, so gastro specialists and doctors are more aware about this condition than they used to be.

As far as I know the only way to diagnose NCGS is through elimination and challenge, which is exactly what you've just done.

Other digestive conditions can be exacerbated by wheat, which isn't necessarily down to their gluten content, but can be due to other components of the food. The insoluble fiber in wholewheat probably doesn't go well with gastritis for instance... but this is something to look into with your doctor.

The bottom line is if wheat/gluten makes you feel ill, then don't eat it!

[fee333]

My blood test for coeliac was negative but biopsies were positive therefore I have been diagnosed as having coeliac. Consultant said it unusual but possible to have negative blood test but positive biopsy.

[hilly2]

cheers everyone i will ask for the other test and i will let you know how i get on monday

[EMcd]

both my son and i are coeliac. younger son showed all symptoms. bloods showed iga deficient. Biopsy was clear. recently had another biopsy as symptoms got worse. still clear. at no point has ncgs been mentioned.

[violetkathy]

You need to be eating that amount of bread for 6 -12 weeks, 4 weeks is not enough.

[KathrynS_UK]

I went for a coeliac test due to ill health and family history, sceptically cut gluten from my diet while I waited the three weeks for the results and all of my health problems either stopped (e.g. chronic sinusitis) or improved dramatically (e.g. eczema and digestive pain/previously summarised IBS)

My results came back negative and when I questioned the correctness of the test and told the doctor about my amazing improvement in the quality of my life he just said 'well carry on not eating it then'.

I am still gluten free regardless of utterly useless medical input. As others have said, just carry on doing what your body tells you that you need to do.

[LucyLocket]

I echo what many of the others have said on here. I already have a known autoimmune condition and doctors have suggested on several occasions that I could be coeliac but have tested negative twice now. It seems that I only have an issue with wheat rather than all gluten and have made a huge difference cutting it out of my diet.

I would go with your instinct and change your diet if it makes you feel better whatever any test results might say!

[Sonianin]

I'd not eaten any gluten for about 6 weeks prior to my first blood tests and naturally they were negative, the doctors were adamant that I was fine on the CD front but did refer to to a Gastro consultant... things have now progressed a little and I'm still undergoing tests as going GF didn't stop all my tummy problems

Regardless, I stayed GF and it's only been of recent that I've tested my limits a little (mainly due to weight loss and still not getting a proper diagnosis). Aside from making my stomach worse, it's made me feel hungover the next day if I've eaten a lot (i.e. a pizza). My skin is horrid tho, I have spots on jawline/upper neck that I just haven't had since I stopped eating it. It's made me more convinced than ever that gluten sensitivity is very real!

There's some great advice here and seriously, if you feel it doesn't work for you then quit it

I know for a fact going GF has not done me any harm as the hospital are still saying my blood tests show I am the picture of health, good ibumin (sp?) levels and no signs of any defficiencies despite being physically uncomfortable with the weight loss.

[hilly2]

hi everyone i thought the tests might come back normal as i was a bit dubious about the four week challenge, it was horrendous eating gluten again i looked 6 months pregnant had severe stomach ache and diarrhoea , doing the challenge confirmed it for me whatever the test results said, i think a diagnosis is important to me because my uncle died of crohns disease and he never went to the doctors until it was too late , the doctors are quite good in cornwall and we have a specialist coeliac department at truro hospital where they do camera capsule endoscopy so heres hoping, i will let you all know cheers

[Irene Administrator]

Posted by hilly2

hi everyone so after having a normal coeliac test result i went back to the doctors, explained how awful it was eating gluten again and she said carry on with the gf diet then and that was that no other help i don,t think doctors want to diagnose it she did say an endoscopy is horrible and they wouldn't do it without a positive test result and she said the diagnosis is the same either way a gluten free diet!

[tlyn63 in reply to Irene]

Go to a specialist and have it done.

[purplemummy]

I would get a copy of the actual tests they did ...

I was tested in 2007 following diagnosis of my son with coeliac disease . The results were negative I was told this twice by two different doctors between 2007 - 2012 .

Hmmm due to the GP being incompetent regarding a number of other blood tests , I decided to request an actual copy of the blood test .... Well whatdoyah know they had only done one test & it said underneath in big letters whilst this test is negative this does not mean this patient does not have coeliac disease other tests required .

I think it is important to know whether or not you have the condition or not .

For a number of reasons - Coeliac is linked to a number of other autoimmune diseases - therefore you might be better listened to if one is diagnosed . In my case a number of other things have had to be diagnosed by myself ( confirmed by Private GP ) NHS Gp didn't listen & therefore missed Pernicious Anaemia & Hashimotos .

I stopped eating gluten in 2007 to support my son who was 7 at the time , so if I want to confirm now then I have to eat gluten or pay for fancy genetic test .

I don't want to an old lady in a care home arguing over the fact that I don't eat gluten as I am possible coeliac - just because it isn't on my notes .

My other son currently shows negative for coeliac disease - however I am now upping the search for fancy tests to truly confirm that he doesn't have it . - Both my boys have multiple autoimmune conditions & I don't want him to be any sicker than he currently is .

I have over the last 10 months been told way too many times that my children don't have a condition based on one test ... when they quite clearly do . This has been with numerous conditions.

[tlyn63]

My brother was tested negative many times but had all the symptoms so the doctors decided to test him one last time and he showed "positive" to celiac disease. Sometimes the intestines can be inflamed and not show a positive result. Don't give up...keep trying. That, or just stop eating it if it makes you sit.

[hilly2]

hi to be fair my doctor did say if i ate gluten for another 6 weeks i could take the test again but it was so awful for me i said no way, i feel really well again now, i diagnosed myself initially so why do i need them now, glad to have support of this group though so cheers

[coeliacvegan]

Hi Hilly2,

I was diagnosed by bloodtest and told I would have to continue eating gluten until I could be referred for a biopsy and thus receive a more 'official' diagnosis. Having stopped eating gluten in the interim and within days felt better than I had for years, there was no way that I was going to start eating it again.

The point I am making is that, as others have already said, you know your body better than anyone, so if you know that eating gluten makes you feel horrible, do you really need a medical label?

Whether you have coeliac disease or an intolerance, the course of action is the same (ie a gluten-free diet), so is there really any benefit in putting yourself through any more tests?

Especially given that false negatives are possible with both blood tests and biopsies...

It sounds like you are doing a good job of listening to your body and doing what's best for you. If I were you, I'd carry on doing that, so that you continue to feel better and better as time goes on.

Good luck with whatever you decide to do.

[Hidden]

I hate to harp on the same thing but was your test a biopsy or blood test ?