Coeliac test

Hi all

I have had IBS symptoms for years and doctors just shrug their shoulders and prescribe medication that has no effect.

I decided to go gluten free last Wednesday and do feel a lot better. I've now decided to ask a GP for a Coeliac test tomorrow (Monday). I've only been gluten free for 4 days, will I be OK if I eat and drink some gluten on the morning before the test or should I wait a few days and go back to my previous gluten fuelled diet before the test?

20 Replies

  • You need to stay eating gluten until all tests have been done in order to get true test results. It's also a good thing to do because people do find that after going GF for a while that when they have to reintroduce gluten they have an even worse reaction to it. good luck x

  • You're not wrong. I just had a glass of cola which contained gluten and felt awful. Now I'll have to go back to eating pizza, pasta and toast whilst drinking copious amounts of beer :(

  • That should do it! You'll know one way or another ...hang in there. You may just get the help you need.

  • Hi frazefast, my doctor sent me for the coeliac blood test and told me that I had to be on a "normal diet for 2-3 weeks. I lasted a total of 6 days before the symptoms were just too much to bear. My doctor told me that that time was not enough so my blood tests came up clear, however he said that clearly the symptoms fit, but I cannot have a medical diagnosis without the test.

  • I was in the same situation and read that 2-3 weeks isn't enough.

    Coeliac UK:

    "How long do I have to eat gluten before being tested?

    It is recommended that you eat some gluten at least one meal every day for at least six weeks before testing."

    Even if you test negative, it seems like your reaction to the gf diet is evidence enough that it's helping, which is great.

    Good luck!

  • Hmm the question is will only a few days absence of gluten after decades of eating loads of it make much of a difference? Or will I have to go another few weeks on a gluten diet before being tested or just a few more days?

  • I was told I had to eat gluten for six weeks before a test as first test came back negative. No way, I'm not doing that. I will keep on the gluten free food and pay for the food.

    . Not worth sufferiing for six weeks just to get food on prescription.

  • It's certainly not for that reason, it's just important to know. But the fact the blood test isn't even 100% reliable is a pain

  • It's not just food on prescription, it's a lifetime of monitoring for related conditions and recognition by the medical community both of which are very important.

  • Hi, thought I would just comment on your post, and give you a little insight into what I endured trying to obtain a result. I had been diagnosed with a hiatus hernia, diverticulitis and IBS. My symptoms were dreadful!! Always had swollen tummy, terrible pains, trouble with constipation then diarrhoea, wind like you wouldn't believe. Mouth ulcers, foggy head, aching joints - to name just a few. Feeling so ill and under the weather I was back a fore the GP's had 3 endoscopy's over a period of time, a sigmoidoscopy, barium enema and barium meal and the result were as mentioned above. At no time had Coeliac disease been mentioned. I started doing my own research and after reading a considerable amount on the condition I decided to go gluten free, I couldn't believe the difference within a few days, the brain fog lifted, my joints did not ache as much and the toilet situation improved dramatically. I returned to the GP's with my food diary and results, she was impressed, she said I probably knew more about the condition than she did, as during her training, Coeliac Disease had only been touched upon and she had never had a patient that had been diagnosed with it! But, if I wanted to get a true diagnosis I would have to eat gluten every day for atleast six weeks!!! I did, and felt so ill by the end that I wished I had just stayed off it. Anyways the long and the short is, Bloods and endoscopy came back negative! All that pain and suffering! So I am not Coeliac, but am definately gluten intolerant - I have been gluten free for three years now, had no flare-ups of diverticulitis or my hiatus hernia, no longer suffer from IBS and feel so much healthier for not eating it. I understand the other health implications associated with Coeliac Disease and asked my GP regarding osteoporosis and to reasurre me she sent me for a Dexa scan which was reported as osteopaenia - so I also have thinning of the bones for which I now take regular Calcium. So I had all the symptoms but not the diagnosis. Wish I had known that when I was putting myself through all that misery.

    I wish you all the best in trying to find out what is troubling you.

  • My situation mirrors yours so much I felt like I was reading my medical history - there must be so many others in the same boat another thing to be aware when diagnosed with CD I believe it can affect your life insurance premiums ! Although for me the fog has not totally gone!!

  • I have found that IBS symptoms can develop with gluten rich foods but not for their gluten but their fructan content. this would probably be applicable for flours like wheat, barley and rye but not for some, oats. practically though I have found that gluten free is the only solution to controlling my IBS because there is very little else in the shops. If you want to risk it, a lot of relief for me came from doing the FODMAP diet. nearly everyone with IBS has sensitivity to anything in the onion family. So if you cannot tolerate onion it is probably worth your while doing the diet just to completely stop the symptoms if you still experience some. The core part requires you to eliminate quite a bit including gluten for eight weeks. So if you are alright with onion I would guess there is little benefit in going on the elmination diet because it would suggest that you are "just!!!" gluten intolerant. If however, the symptoms continue, look up a list of other fructans and eliminate those as well as the gluten there is a good one on wikipedia. Its the reintroduction period with FODMAP which brings back the symptoms but I have taken the attitude that it is my body and even if the doctors and dieticians think they can force me to eat something I know harms me I can take control and test with something of a lower concentration than those I know already give me trouble. Hope this helps and best wishes for a speedy resolution.

  • could you ask your GP for an endoscopy with biopsies? my blood tests for CD were negative but symptoms "warranted further investigation " the biops from upper colon proved absolute positive, my villi were flat, this is the only test that convinces the medical profession of a CD diagnosis in my experience. try for it, insist on it if you can!

  • I was advised to give up wheat after a bout of ulcerative colitis. I felt so much better.

    After 6 months my doctor suggested the blood test-which came back negative. The dietisian and consultant said it would as no glten in body to react and the uonly wat to be sure is to resume eating wheat glten and have another test and biopsy. I said no thanks-but of course can't get prescriptions without a confirmed test.

  • My GP told me a few days without gluten wont make a difference for the coeliac test which I have tomorrow. He is a bit of a loon though so am having a gluten fuelled day. Sadly.

    I don't mind the ale though ;)

  • No matter the result I'm going gluten free after it. Bar feeling tired in the evenings, the difference was immeasurable for the few days I did give it up. No stomach pains, no gas, in fact no IBS, No congestion, no allergies, no acid reflux and no inexplicable depression.

  • You would need to be on a gluten diet for your stomach to show any signs of cd. If your blood tests come back showing positive for cd, then the next step will be an endoscopy to do a biopsy of your stomach and if biopsy proves positive then you get the diagnosis of cd. After that you should be sent to a dietician - all of the above happened to me! I was diagnosed after coming out the most painful itchy blistering rash - DH - and this can take up to 6months maybe a year to clear!

  • Am afraid to say we had the same problem as ScouseKitty and a few others. My little boy was too ill to eat enough of the food to get the positive blood test. Most alarmingly, his paediatrician suggested we try again next year after feeding him gluten containing foods for six months beforehand! I can't do this. I would be poisoning my child and I cannot do that to him. I don't think I should have to. He ended up in hospital after three weeks last time as his immune system couldn't take any more. Yet still no-one sees fit to do a biopsy. So we have no diagnosis, yet whenever he eats so much as handful of crisps that 'may contain' gluten - his tummy goes up like a balloon. Needless to say I am insanely vigilant with regard to his diet and so is he now. He is only 3 but is aware that many foods give him 'the tummy ache' and very rarely eats anything with gluten, unless by accident, but we are both pretty good at checking labels and are rarely caught out.

    I am so sorry that it is so difficult for so many people, but keep beating up your doctors and make a nuisance of yourself. That is what I plan to do. Am trying to get a referral to our third paediatrician. Wish us luck.

    I certainly wish you the very best.

  • My GP told me that eating gluten was no longer necessary for a Coeliac test as there is a new one out. News to me.

  • 4 days is nothing, keep going eating gluten from now and you can have a test any time. However the test does not shows always antibodies and you still can be allergic with gluten. Do the test and regardless the result start to avoid as many cereal as you can. When you want bread with something eat carrot or other roots instead, it really substitutes bread and you won`t feel hungry. White rice and potato can be the same harmful for the health even if they don`t have gluten. IBS it can be cured if you don`t eat cereals. Avoid too much green and raw vegetable on the beginning if you feel pain. Eat them cooked. A table spoon of ground flax seed every day in fruit shake helps with digestion. And yes, use almond milk instead of cow milk. Regular exercise is also a big help in IBS. Seriously!!!!

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