Did anyone else have to eat wheat for a period of time before they could be tested for being a coeliac?

I have a wheat intolerance but recently had major tummy troubles. My GP thinks I could be a coeliac and also be lactose intolerant. She said I have to eat wheat for two weeks, then the blood test can be done to see if I'm a coeliac.

I haven't eaten wheat for 3 years as it makes me so ill. Do I really have to put myself through two weeks of hell to do the blood test?

12 Replies

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  • Yes, everyone has to. If the blood test is positive you will need a biopsy which requires you to eat wheat more than once a day for 6 weeks. But it is 100% worth it to get the proper aftercare.

  • Hi Rustycat, The reason that they ask you to eat as normal (in other words all of the foods that you have cut out of your diet) is to get a definite black and white absolute diagnosis.

    I must admit - when I first went to the doctor I was convinced that I had a problem with wheat alone - as far as I was concerned I wasl allergic to wheat. I was surprised that the doctor wanted to test me. I had been eating gluten free for quite a while and certainly never any wheat. My test came back positive for coeliac even though I was (as I thought) not consuming much gluten. I was however eating pearl barley, rye and oats .... this was enough to give me a coeliac reading. It is better though to eat all the foods that trigger a positive response - because this makes it much easier to diagnose.

  • So sorry honey but you do. Upside is that the lactose intolerance isn't for ever. Your colon can't take in nutrition until it mends a bit and can't digest milk properly. I get extremely and instantly ill with wheat, even codex wheat starch, I know hoe you feel. If you need to talk to anyone we are all here. :)

  • yes unfortunately you will have to, due to a suspected stroke i found out i was a celiac, and on being referred to the relevant consultant, he decided that i was to undertake a gluten free diet immediately!!! i also suffered terribly with iron deficient anemia, cutting a long story short, i moved counties and the consultant treating me for the anemia was also a gastroenterologist, asked me if i was biopsy diagnosed to which i replied NO!! he said that i had to have this procedure and so had to then resume eating gluten for 6 weeks (was not a pleasant experience) as horrible as this seems it is necessary!!

  • I'm in a similar situation and I asked my GP how long do I need to do it and how much do I need to eat on a daily basis. She couldn't answer my question! I've decided not to do it as it will make me feel so ill and yes I will lose out on my UK prescriptions but do I really want to make myself ill for 3ish weeks just to get a final diagnosis from my GP? I'm just going to stay on a gluten free diet.

    Can you not go to a proper registered Nutritionist as they can maybe advise you?

  • I also couldnt bear the thought of going back to non stop runs to the loo and couldnt take time off work to sit on the toilet so opted to treat myself havent eaten wheat for 18 months and about 90% of the problem has cleared up

  • Ask about genetic testing. Look up HLA-DQ2 and HLA-DQ8 to understand it yourself.

  • I hate to say this but either my Consultant is wrong or some of the advise everyone here has been given is.

    I recently had a Gluten Biopsy because of repeated problems. The test was negative because as you say above I had already cut out wheat and gluten from my diet. I asked the Consultant about having a Blood test and he like the rest of you said the same - I would have to resume eating gluten in order to see if I had Celiac.

    Then I visited my Stroke Consultant and was filling him in on all of the above. He told me that you CAN have Celiac disease and the gut biopsy results be negative. Not only that but you can also have blood tests to see if you have the antibodies even if you are on a Gluten free diet. I pressed the above point but he reassured me and went into a long explanation as to why these blood tests can be positive. He did say that there was a level of something that would be reduced but it would still mean a positive result and he went on to explain about the different kinds of Celiac Disease which often get missed because Doctors only relate it to the gut.

    I wish I could have taped his explanation but when I go back for my results I will try and take in more.

  • Hi Ellen, yes you can most definitely get both negative blood test results AND negative endoscope results. I know of confirmed coeliacs who were negative for both! It may be that your consultant was speaking about the Iga antibodies (I think this is the correct term?) which I believe are present whether or not you are currently eating gluten. I think there is a tendency to rely on blood test results (presumably these are cheaper to obtain for the NHS) which is a shame as they are not 100%. Similarly with the endoscope - this only targets a particular area of your villi, it may miss the actual bit that's affected... so like the blood test it can give a false negative. I had a negative blood test but my doctor still referred me to the dermatology clinic as she and the derm specialist both suspected Dermatitis Herpetiformis (a skin variant of coeliac). It's months later, I've had skin biopsies done and am 'enjoying' the 6 week wait now for the results! But at no point did any of the doctors or specialists query or dispute the need for me to stay off gluten (guess I'm lucky that way). So long story short - the blood and endoscopy tests are not necessarily foolproof. Sorry if this came as a shock.

  • Thanks for your responses everyone.

    I decided to eat some pizza last night as I'm going to have to do this wheat/gluten eating thing for two weeks. I have been SO ILL. I've been really down about it. I know I have to do it to get an accurate result but I don't know how I'm going to deal with being so ill.

    Also having to avoid lactose is getting me down, but as Morningstar said it's not forever.

    I'm a little worried that if I am lactose intolerant and have Celiac Disease what on earth am I going to eat? I'm a vegetarian and there is only so much rice and veg I can eat! I won't be able to go out to eat in restaurants either! (I live in the sticks and there isn't a great collection of restaurants as it is) I only have to mention I'm vegetarian and wheat intolerant and they look at me like I have two heads.

    When I was in and out of labour for 4 days the hospital really couldn't cater for my diet needs. They gave me a jacket potato everyday!

    It's times like these when I wish I was back in London where there is a bit more understanding of diet requirements for wheat intolerance and Celiac Disease.

  • Hi Rustykat, are you able to tolerate quinoa and millet grains? These can be options to rice and tatties! I hear you with the daily jacket potato...this is often what I end up eating when I'm out... Do you eat eggs? (Some veggies do, some don't) They can be an option. Google gluten free vegetarian recipes, if you haven't already, and you may hopefully be pleasantly surprised with what you find! Good luck! :)

  • Hi Rustkat, you need to eat gluten every day for 6 weeks in order for your test results to show up. Many years ago when I was diagnosed I was told to only eat for a couple of weeks and my tests came back negative.....it took another 2 years of being ill to get retested and properly diagnosed. It's hard to do when it makes you feel so ill but long term getting a proper diagnosis can only benefit your health because you will automatically be checked up on. Good luck

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