GP is doing Coeliac Test - is it true that you need to be eating gluten for at least 6 weeks before testing?

My GP has agreed to do Coeliac Screening (blood) but I have reduced eating wheat for sometime now. I read on this forum that the advice from coeliac UK is to eat some gluten in more than one meal every day for at least 6 weeks before testing. coeliac.org.uk/coeliac-dise...

I have not been avoiding gluten/wheat totally but have reduced things like bread/pasta etc quite a lot. I understand the test is not totally accurate and it is possible to get false negative or false positive.

What do people recommend? Now that I've reduced wheat I don't really want to eat lots of wheat/bread to get tested. Should I get tested as is anyway? should I not bother? or is it worth stuffing myself with bread/wheat to get tested?

Please advice.

25 Replies

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  • Hi Ocean, It's true I'm afraid if you are looking for an acurate diagnosis. (I am a coeliac)

    You will need to eat the equivilant of 4 - 6 slices of bread a day before testing and certainly if you are going to have an endoscopy otherwise the villi - which flatten in coeliacs will regrow and your small intestine will look normal.

    I would urge you to get tested so that you know one way or the other because if you are gluten intolerant and carry on eating gluten containing foods in a reduced way, you are not only going to damage your health, but in the long run, you have a higher chance of stomach cancer. sorry if I am not as clear as you were hoping for as I am just on my way to bed, exhauseted. xx

  • that's right :)

  • Thanks boo16! no worries, good night. you can always reply again tomorrow! and by then some other people will hopefully reply.

    I am not having an endoscopy, it is the blood test but not sure what the test is, probably the standard NHS Coeliac blood test -whatever antibodies this is..

  • In response to your pm, some years back I had the York Laboratories test done to see if I was intolerant to anything - and what came up was Ig antibodies to wheat, gluten, yeast, eggs, cashew nuts and dairy products. I cut out everything in those food groups for 6 months, then slowly reintroduced to see what I could tolerate.

    I found I could not tolerate introducing any milk at all, or cashew nuts, but was able to introduce small amounts of bread (wholewheat only) and eggs.

    But a coeliac test by the GP showed negative.

    yorktest.com/ (I paid for this myself but was able to get half the money back as I have a policy with Simply Health)

  • Yes, the other thing is that now some experts say that you can have the disease but it not show in blood tests. In which case you need the diet any way.See paper in BMJ in November by my endo,

    Jackie

  • yes you need to eat gluten daily for 6 weeks for a minimum of 2 servings if I remember right, the coeliac association website will tell you. You might as well cancel and save your blood if you have not done that. Reschedule for when you have been 'glutinesed' enough :D

  • My understanding is that you can be gluten intolerant but not necessarily Coeliacs -these are two different conditions. This is one of the reasons why you may not come up on the coeliacs test that the GP does. There is considerable research going into gluten intolerance which some believe is linked to the new wheat grains that were introduced back in the 1950's. This was something I was looking into and in fact was considering whether to get referred to a NHS specialising in gluten intolerance where I live. However i have found for me at least that my wheat intolerence has largely disappeared since maximising my B12 levels using sublingual tablets and a high complex B vit wit hfollate in -I was not expecting that result so was very surprised.....

    So this leads me to wonder if this is also linked to the immensely reduce amount of vitamins that our food now contains -something in the region of 50x's less then back in the 50's -well i am quoting a programme on BBC the other night looking at the content of fresh fruit and veg that we buy in the supermarkets......shocking statistic -now I have no idea if this relates to grain for B12 but can only wonder!!!

    And yes am afraid you do need to eat it once to twice per day in your daily diet for a minimum of 5 weeks before getting tested for Coeliacs. x

  • Waveylines,

    Thank you for your interesting post.

    It is interesting that your wheat intolerance has disappeared with B12 and high complex B with follate. Could I ask what your B12 levels were prior supplementing and also how did you find out you are wheat intolerant?

    XX

  • Hi Ocean, I did not take a blood test for B12 but followed Dr Chandry's assessment from his website. i wasn't expecting there to be any effect on my intolerance of wheat but popped them in as i wasn't feeling well and i was making sure that my uptake of thyroid hormones was maximised......

    At the same time I popped all the wheat grains back into my system with resignation as I needed to get tested for what i thought was intolerance of wheat -hence knowing about the 6-7 week saga. Felt terrible at first -lots of tummy aches, running to the loos, bloatedness, constipation, indigestion and tremors -i really didn't know if I could do weeks of eating wheat -but after a month i suddenly noticed that i wasn't as bad and after 5-6 weeks noticed that my symptoms had disappeared......the only other difference to what i was doing was the b12 and extra folate......

    I have now been able to eat wheat really well without problems. my GP did a b12 test which of course i had been supplementing b12 at 1000mcg per day (twice per day) for over 7 weeks so the result came back high at 700 ( above the reference range).

    I am now taking one 1000mcg of B12 per day and one Lambert's complex vit B to keep me going.

    I have since realised that low B12 can mimic similar symptoms to gluten intolerance....so might be worth a throw to see if it makes a difference to you.

    Hope this helps. :) x

  • Hi Waveylines,

    Thanks for that, very useful indeed!

    Does the` Coeliacs test done by GP/NHS would reveal if you are gluten/wheat intolerant? or is it for diagnosing Coeliacs disease only??

    and stupid question but can one have Coeliacs without being intolerant to gluten/wheat?!

    xx

  • Hi Ocean -You can be gluten intolerant without being Coeliacs but not the other way round. Not all Coeliacs but a lot carry a gene that they can be tested for so it tends to but not always run in families.

    The test run by the NHS/GP will not show up gluten intolerance so you can show negative on this but still be gluten intolerant. Infact many Coeliacs have found that they only register on the test after several attempts so it is not entirely reliable.

    The NHS protocol they have says that if you have ongoing symptoms and signs despite being negative on the test then your GP can refer you on to a gastroenterologist. However not all are interested in gluten intolerance so if you do decide to insist on this route then you will need to check out the Consultant's interests.

    I live in Sheffield and there is a lot of research going on into this at the moment especially as they have found that gluten intolerance can cause ataxia (movement disorder).......funnily enough Sheffield have the patient group with the highest number of people being diagnosed in the country! However it is reckoned that 40% of cases are presently being missed -so maybe Sheffield are just a bit more on the ball on this. xx

  • everything that is GM and highly prevalent in western diets is causing more intolerances... soya, wheat, corn... Dairy is pumped full of hormones and antibiotics and cows are bred for milk yeild. In the east, Rice intolerance is becoming more common.

    chorley wood bread process stops the starches being broken down and converted and higher yeast content in bread and less natural b vitamins as in overnight raised bread.

  • I had been ordered a Gastroscopy and Endoscopy because I had a significant low Iron problem.

    My biopsy showed changes that (according to Endo) could only have been caused by Coeliac. Intra epithelial lymphocyte increased numbers. So the villi were still ok at that point.

    Following this I had blood tests, yet those blood tests and every one since then showed negative. These despite eating gluten.

    Consequently, both my GP and my Endo agree that for me the logical way to be is Gluten free.

    This I have been since May last year.

    I no longer have any bloating and am as "regular" as clockwork. This also helps with my Thyroid and B12 problems.

    One fantastic benefit for me is that I no longer need Iron supplements. Since removing Gluten from my diet my Iron levels have been the highest they have ever been. Now whilst this isn't "diagnostic" in any way, my Endo did see this as another factor to confirm the Coeliac problem despite the negative bloods.

    Apparently there are newer studies around and he is particularly interested in the differing grades of problem that are about, from the Gluten sensitivities, through allergies to the seemingly mild Coeliac like mine to the full blown, significant cases.

    E,x

  • Interesting that the biopsy showed changes but the blood test negative. A lot of people get negative result with the blood test, seems like the blood test for Coeliac is mostly pointless unless you have full blown Coeliac... thanks for the contribution.

  • Thank you all for your answers!

    I have just phoned Coeliac UK and spoke to a dietician for advice. She said previously it was 4 slices, they now recommend minimum one meal (according to NICE guidelines). She said a sandwich is a minimum or a pasta based meal or couple of biscuits or a cake. And she said it is best to eat wheat and rye as spelt, oat and barley have lower amount of gluten.

    It looks like I am going to have to increase the amount of wheat/gluten :-( which I am not happy at all! as I have reduced them for a while now, I wish I had asked for this test before.

    I am going to do the amazon biocard test first and if this comes back negative I will then start stuffing myself with wheat/gluten for 6 weeks for the NHS test.

    Could someone please tell me which one of these on the link below is the one I should be ordering?

    I think boo16 has mentioned this in one of her posts back in November, I hope she will be here soon to point me to the right one!

    amazon.co.uk/s/ref=nb_sb_no...

    XX

  • Hi

    You could always send her a message! :-) Just go to 'messages', 'compose message' and then put her name in the 'Send this message to' box.

    Louise

    x :-) x

  • thanks Louise!! :-))

  • Message received, Ocean and I have replied - Good luck xx

  • Can people please tell me whether the` Coeliacs test GP/NHS is doing would reveal if you are gluten/wheat intolerant? or is it for diagnosing Coeliacs disease only?

    thanks

    xx

  • Oh great. My GP did a coeliac test which I should be getting the results of tomorrow. I didn't ask for it BTW. So it was pointless as I haven't knowing eaten anything with gluten in it for nearly 10 years. Ah well. I think they might have mentioned that I had to have eaten gluten - not that I would have done.

  • Well, I mentioned that I wasn't surprised that the test was normal as I hadn't eaten anything containing gluten for years. GP said it didn't matter and the test would still pick up antibodies. Mind you, he didn't look well, so perhaps he wasn't thinking straight - i would tend to believe Coeliac UK, but it would be nice to know

  • I had a coeliac test without warning too - I did say but I avoid bread etc. so it won't work - it was negative. GP didn't say anything about antibodies 'tho.

    I have since learnt, there's 2 tests - TTG TgA antibody (the lab range here is 0.8-4.0 g/L) and the Coeliac test result states "provided on a diet with adequate gluten, 2-3% of coeliacs poss neg" (range 0-1.9 u/mL).

    J x

  • spareribs, thanks for that. I am now eating gluten/wheat for 6 weeks and will test at the end of 6 weeks and see what comes up. I wish I had done the test when I was eating gluten/wheat as I had reduced it quite a lot.

    Is TTG TgA antibodies what the GP/NHS test for?

  • Yes it's on my friend's print out from NHS GP under Coeliac tests, along with 'if family history refer to a gastro…' I only made a short note of this I think it was 'refer to a gastroenterologist'.

    There's various IgA tests - sorry I'm not sure which is which - you could ask on the Coeliac forum on HU? (see My communities on the green bar above at the very top).

    Here's what about.com say.... (but it's the USA)

    celiacdisease.about.com/od/...

    Jane :D

  • The difference is that coeliac disease like Hashimotos is an autoimmune disease and has many associated long term health problems and vitamin deficiencies. I have both Hashis and coeliac disease. Gluten intolerance is exactly that an intolerance to gluten. It is very important in the case of coeliac disease to be tested as it can cause lots of damage not just to the intestines but issues with cancers, fatigue, brain fog etc. in fact lots of similarity to the symptoms of Hashimotos.

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