Is there any other option, other than blood tests and endoscopy, that anyone knows of, that would lead to a diagnosis of CD?

I initially went to my doctor, about 3 years ago, as I was suffering from dreadful bloating and wind. She advised I remove wheat from my diet and see what happened. The improvement was almost immediate, along with other benefits i.e my joints stopped aching (which I had put down to age!!), and my psoriasis cleared up. After 5 - 6 weeks I was told to start eating wheat again so that blood tests for CD could be done. Unfortunately this made me so poorly I was unable to eat much and the tests came back negative. Since then I have avoided gluten, and also now have to avoid oats as they bring on the same symptoms. My doctor did book me in for an endoscopy, but my reaction to the ingestion of any gluten is now so severe that it would be pointless having the test. I have seen a dietician, who really wasn't much help, and my doctor did ask the hospital specialists if there was an alternative, to no avail. Although I am managing my diet myself (I am also a vegetarian), and have annual blood tests, it would be beneficial to have an official diagnosis in order to receive the extra support services. My Grandmother is a coeliac so there is a family history. All help and advice greatly appreciated.

12 Replies

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  • Hi Mighty mouse, your predicament is the negative side of being a self diagnosed coeliac. In that you are ''outside'' the system.

    So other than a gluten challenge you have 2 options:

    1, Stick to your dietary regime and avoid all wheat and gluten and oats (There are some blogs on here about oats and oat gluten avenin) nd stay undiagnosed.

    2, Ask for a genetic test to see if you have a genetic disposition to having CD and that's your only option for diagnosis other than a gluten challenge.

    This may interest you:

    celiacdisease.about.com/od/...

    There are many people in your situation so it would be interesting to others how you get on with this, so please let us know.

  • Thank you Jerry, I had never heard of the genetic test. I have made an appointment with my doctor for next week and will discuss this with them. I will print out the info from the website you kindly provided a link to, just in case my doctor has never heard of it either!!

  • Hiya,

    My Dr said it is a pointless exercise going on a Wheat 'challenge' because Coeliac is there for life. As for the endoscope, it's well worth doing because you can get Bread mix and lots of other stuff on prescription,and that will save you a fortune. If your worried about the endoscope then don't be, i have had it Three times and i can't remember anything about it.

  • Thank you for your kind reply, but unfortunately the endoscopy is not an option as I am unable to tolerate gluten in any form - the reaction I suffer is so severe that I would not be able to tolerate it for the period required prior to undertaking the test.

  • I was the same as you MightyMouse but believe me, a relativly short time eating gluton the end result is WELL worth it, you will get support from your doctor and the hospital. It will take courage to go through it and i wish you well in the future. PLEASE think hard about doing the challenge.

  • Hi Mightymouse

    There are 4 blood screening tests and one gene test but I believe all are dependent upon you consuming gluten

    Immunoglobulin, Antigliadin Antibodies, Endomysial Antibodies, Tissue Transglutaminase and HLA.

    Like you I felt much better on a gluten free diet after years of gut problems. Then I was encouraged to resume eating gluten (a gluten challenge) so that I could have an endoscopy test for CD. I really didn't want to do this as I liked feeling better. I postponed the challenge and subsequent test about 4 times. In the end my GP said I wouldn't get any "help" if I didn't do it. In the end I only went ahead because I didn't want to be seen as uncooperative (and maybe disregarded). Blood tests previously showed positive.

    I was ill quite soon after starting to eat the gluten rich diet (you have to eat more bread than I would have ever eaten). Within 48 hours I was in bed and was really ill, not just abdominal symptoms but feverish and dizzy. I only managed it for 3 weeks, by which time I was unrecognisable and hardly able to walk. In the end I was too ill to have either the anaesthetic or throat spray as my blood pressure was too low. The endoscopy (biopsy samples - over in 5 minutes) revealed I had full blown CD. Although I immediately resumed my gf diet I have never felt well since and haven't had the help I thought I would have. I thought I would be seen in a clinic annually, but haven't. I had to pester for a bone scan. I have found it so difficult to get any prescription foods that I don't bother anymore. (Most of it was awful anyway.) I'm still really poorly most days but get fobbed off constantly as the gf diet is supposed to be the end answer. I now have other CD related problems including malnutrition, lactose intolerance, anaemia (which all occurred, apparently, as a result of the final assault on my villi) and others.

    BTW I was (or I thought I was) wheat free for years but because I didn't even know what coeliac was I was still damaging my gut as I needed to exclude all four 'BROW'* foods and at that time I didn't know how gluten was hidden in so many ordinary foods.

  • MM, I am in the same position - my GP's initially even refused to acknowledge the root of my problem could be wheat - but by then, I had started to see the pattern for myself - so by the time I saw the specialist I was on a pretty much gluten free diet.

    I was confirmed to have both Vitamin B12 and Folic acid deficiencies but my blood tests were negative (i'd been off wheat / gluten for about 4 months at that point).

    I subequently had another attack of what I now know to be collagenous colitis (another side effect of coeliac) and when I developed Pancreatitis during an attack, I had a colonoscopy which identified blunted Villae over 18 months after switching to a GF diet.

    Yet - the specialist STILL will not confirm coeliac diagnosis unless I start eating wheat again and have the blood test which I am simply not prepared to do - it took me a very long time to adapt to coping with a GF diet, surprisingly, the loss of my beloved father was a turning pointm combined with discovering that actually, if you shop carefully, you can eat a varied and enjoyable diet (I have severe back problems which make it difficult to even cook a ready meal never mind start making things from scratch.

    I am waiting for the gene test - but even then, they are adamant they will not confirm coeliac without the blood test.

    Since stopping eating Gluten, I have far less stomach problems, lifelong horrific ezcema has cleared up - the Vitamin B12 injections are a lifesaver - every test and change in my physical wellbeing screams coeliac - but the specialists won't officially confirm it :(

    Sometimes you have to walk your own path and that means learning what works for you, I am glad I found this forum because it's made me realise that I am far from alone in my experiences of the medical profession and coeliac.

    I still very occasionally get caught out - the side effects are sufficient for me to know that there is no way I could return to eating a Gluten based diet, and now I know what I know - I sometimes feel very annoyed with myself that I didn't recognise the problem long before I did.

  • See my profile for my experiences - I've not had an endoscopy. I, like yourself self-diagnosed originally and now have strong reactions to gluten so gluten challenge was not an option. But I had a huge row with the hospital about it who were trying to force me on a gluten challenge. I eventually went private and found a sensible gastro specialist who diagnosed me without endoscopy.

    Depends what your motivation is for getting diagnosed.

    Prescriptions available in my area are very poor indeed; I don't bother and just

    buy GF foods that I like.

    For me, whilst technically the conventional advice is "get the test done", I have not benefited one iota as a result of the diagnosis. Prescriptions are rubbish and getting more limited in the area where I live, I know more about CD than my local GPs and I have to nag them for blood tests, etc.

    All I've achieved by getting an official diagnosis is making it much more difficult to get life insurance as it is now official on my medical records and I have had refusals from insurers.

    I knew I was coeliac anyway. So my advice would be to think twice if you do react that violently.

  • I couldn't have an endoscopy or colonoscopy because of severe colon damage due to abscesses so my consultant referred me to Aintree Hospital (Liverpool) where they have 1 nurse (for the whole of the NW) who is trained to use a special 'Pillcam' - a tiny camera that you swallow and then it is connected to a bag that you wear by Bluetooth link. The camera takes hundreds of photos as it passes through your body (one use only!) This is how I finally got my diagnosis after over 35 years of ill health, but I have to thank my Consultant for this as he was determined to find out the root cause of all my problems.

  • Hi, Certainly you are allergic with gluten. Did you stop eating rye and barley as well? There are no extra care after official diagnosis. I took all these process with gastroscopy and they even had no idea what is the condition of my villis.

    The prescription doesn`t work, so I buy my own GF food, member of coeliac is just about asking for my money (not enough I am coeliac, I am punished to pay for?), useless!! The dietician can`t tell you too much. You can always get ideas from google related what to eat. If you need advices write me, happy to help you with my experience.

  • One more thing is important: go and ask to scan your bones, this is important but even if there are problems with the right gf diet goes back to normal (even if some doctors says differently, I talked to a specialist who told is going back to normal the thin bones)

  • Many thanks to everyone who has responded to my question - so much for me to think about. My doctor has referred me back to my gastro - I have an appointment early Feb. Not sure if I will get anywhere, but at least I shall go well armed with the info you guys have provided! I will report back in due course. :-)

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