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Some advice about diagnosis greatly needed.

Posted , 6 users are following.

Smash20
Smash20

Hello,

I really need some advice about Coeliac disease diagnosis and what I should do. The situation is I started developing severe stomach upset in late 2009 (along with other symptoms, mouth ulcers, extreme tiredness) went to the doctor, had some blood tests and was suddenly told I had shown POSITIVE blood tests for the antibodies associated with Coeliacs. So I was given the usual leaflets and told to AVOID gluten and was to be referred to a gastroenterology expert at a hospital where I went for an endoscopy to confirm diagnosis.

Though the endoscopy biopsies came back NEGATIVE for coeliac disease (now at this point I had been avoiding gluten for probably about 6 months) on the doctors initial advice, no-one had told me to continue eating gluten, which is what I see you should do - everywhere on the internet.

As the endoscopy came back with negative results I was booked in for a colonoscopy probably another month or two later, which again I wasn't eating gluten at the time of, and the results for these biopsies also came back negative. The Gastroenterologist told me that even though I hadn't been eating gluten, it would have shown up in a biopsy, and I was diagnosed with mild colitis.

I obviously trusted the opinion of the doctor as he has years and years of experience, but I can't help but think it odd that I had those positive blood testsway back when and was told I had Coeliacs and then the diagnosis was taken away following these other tests.

What I want to know is whether I should follow this up again with a doctor now it's 2014 and what I should say? Or whether I'm overthinking this, and I don't have it, just an intolerance to wheat? Any advice is greatly appreciated. Thank you so much! Sorry for rambling on!

1 like, 13 replies

13 Replies

  • Avocado
    Avocado Smash20

    Posted

    Well that was irresponsible advice from the doctor. The fact is we don't know how much it matters that you'd been on a gluten-free diet for six months before, but it may have affected the result and given you the wrong diagnosis. To my knowledge there is nothing in your intestines which signifies "I can't tolerate gluten" except the inflammation it causes. So I think you should at the minimum get a second opinion from another doctor. Let them know what you concerns are, because they are valid, and that you'd like another gastroscopy if there's any doubt. 

    An interesting question is also whether you got any help from the gluten-free diet. Did you continue or quit, and how are you feeling now? If you are eating normally and feeling ok, then there's probably nothign to worry, but I suspect you are not feelig ok... 

    • Smash20
      Smash20 Avocado

      Posted

      Hi thanks for your response. 

      Yes I've continually been on a gluten-free diet since i was first 'diagnosed'. I am 100 times better than I was before I was diagnosed, as I had to take naps everyday and was struggling with constant pains etc... 

      I everynow and then suffer badly (last night!), which I don't know if is related to not being strict enough with things like cross-contamination or if something else is affecting me.

      I did in fact go to a (different) doctor the other week and he told me to have another blood test, but again did not mention having to eat gluten beforehand. Is this something I should bring up? 

  • rachael2014
    rachael2014 Smash20

    Posted

    The initial blood test results need to be confirmed by an endoscopy so I would say don't just go on those alone. Bad news is you will have to resume a gluten diet and you will probably have to request the blood test again. But you know now to keep on the gluten right up until you have the endoscopy.

    You can then do what I did regardless of the result of the biopsy - go gluten-free anyway. Although diet is the answer to CD, I hope you don't get other side affects like I did when I went GF - I've had bad eye excema solid for 6 months now and never had before. The first red patch on my eye occured the week I went GF.

    • Avocado
      Avocado rachael2014

      Posted

      Sorry to hear that Rachel. So none of the advices helped at all?!
    • rachael2014
      rachael2014 Avocado

      Posted

      Hi Avocado, what advice do you mean? I did ask a question about eye inflammation some weeks ago but have lost the conversation!
    • Smash20
      Smash20 rachael2014

      Posted

      I have been on a gluten-free diet for several years, which helped dramatically, but I still suffer probably once every two weeks or so. I don't know if it could be another intolerance?

      I think from this I definitely need another chat with my doctor, whatever it may be. I'm sure he'll be fed up of me soon! 

    • Avocado
      Avocado Smash20

      Posted

      Hhmm, it doesn't really seem like another intolerance. I wonder if you are being attentive enough following the diet. In any case, after following a strict GF diet for several years it may be very difficult to return to the usual diet. As some people have reported on this site, vomiting etc. is likely to occur. The option always remains that you simply continue on a strictly gluten-free diet. (But for the sake of motivation, proper diagnosis is always the best.)
    • Avocado
      Avocado rachael2014

      Posted

      Hi, I remembered a bit wrong; it was laurabro who started the discussion. But you can still find it: look for a topic called "Coeliac Disease and Eyelid problems". It's a topic with the "last reply about a month ago". 

       

  • MaggieBgood
    MaggieBgood Smash20

    Posted

    Oh dear. This is becoming a common occurance for people. It goes to show that there really needs to be new guidlines for the NHS after a positive blood test - a VERY quick endoscopy, and no cessation of gluten until after that is done. Maybe Coeliac UK can take that up with the health minister. I'd hesitate to tell anyone to resume eating gluten, but I can't think of any other way to get a full result at endoscopy. I was lead to believe that if gluten is stopped, then the villii in the gut recover - therefore, it would look as if you were not Coeliac if your gut is in recovery. Does anyone else know any more about this? I'm sorry for what you are going through.
    • Smash20
      Smash20 MaggieBgood

      Posted

      Thanks for the understanding! It is very frustrating, as I'd been led to believe for quite some time that the result was the result, and I thought no more of it, but continued the GF diet. 

      Now I read more and more that gluten should be a part of your diet whilst tests continue. 

      I do hope no-one else will suffer the same mistakes!

       

  • belinda71630
    belinda71630 Smash20

    Posted

    It's my understanding also that the Gold Standard is still considered to be the biopsy.  I was in the same situation as you....had already been eating GF for months and didn't want to resume eating gluten for an endoscopy/biopsy, so my Dr ordered a blood test to look for HLA DR/DQ Genotyping for Coeliac Disease (probably what you had done).  Apparently, about 95% of people with CD have either HLA-DQ2 or HLADQ8 antigens in their blood.  Not everyone who tests positive for these will develop CD so it's not 100% conclusive but it may give you some useful, additional info.  For myself, the result was negative so I'm assuming I probably don't have CD but I still choose to eat GF because I'm hoping to improve chronic relux/gastritis and I believe wheat is detrimental to everybody anyway .  If you do have CD you must stress out about any possible gluten contamination but now I just choose to avoid it but don't have to panic when I'm eating outside my own home in case someone contaminated my food with gluten. It makes life a lot easier to know one way or the other.
    • exdancer
      exdancer belinda71630

      Posted

      I can never get my head around GPs advising everyone to AVOID gluten when they should be telling us to CUT IT OUT altogether (to me avoid simply means to try not to include it, and implies that a little bit now and then is OK).

      We all know by now that we must continue eating gluten until after the endoscopy, and thereafter to never ever again eat the stuff!  Even if the endoscopy comes back negative for CD, if we feel better on a totally GF diet then surely thats what we should eat.

       

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