To diagnose or not to diagnose

Hi,

Would you say it is worth the hassle of getting a diagnosis?

I have read a mixture of thoughts with some saying get the diagnosis so you can get the prescription food whilst others say it's still epensive and not worth it.

I've heard a diagnosis can up life insurance costs.

I've heard that you don't get much more support after a diagnosis anyway.

Not sure what to do. I know I am better without gluten so am happy to just stop regardless. But then can I ask for bone tests etc without a diagnosis of coeliacs?

Opinions appreciated.

32 Replies

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  • Reasons for diagnosis:

    - Peace of mind

    - Access to prescription foods

    - Guarantee that if you develop other related conditions the doctor will support you

    Reasons for no diagnosis:

    - Investigation procedure invasive, sometimes gives negative result and means consuming gluten for several weeks (making you ill)

    - Life insurers may rate, exclude or refuse cover

    - Gluten free prescription foods sometimes limited (depending upon locale)

    I chose not to go down the "gold standard" i.e. endoscopy diagnosis route and eventually went private and was diagnosed by a gastro specialist on the basis of blood test, my medical history, food diary/symptoms and genetic link (sis has coeliac).

    Having done this, I have derived few benefits as my local Primary Care Trust have hacked back prescription foods; I still know more about Coeliac Disease and related diseases than my local GPs and have had to force them to do things like bone density scans.

    I tried to get life insurance and was refused.

    I knew I was coeliac anyway so little peace of mind.

    So overall, for me personally not worth it, but you have to make your own evaluation.

    I personally don't think it is necessary unless you have other odd symptoms and if the absence of gluten makes you better, carry on....

  • hi meanioni, thats interesting about life insurance! Why would they refuse, do you know?

    Dawn

  • They did not go into details, but I think they took the view that there was an increased risk of mortality.

  • I've never had any problems getting life insurance and have even had critical illness cover since being diagnosed and the rates I've paid have been very competitive.

    I do think getting a proper diagnosis is important so that future health issues aren't missed and checks get done. Not everyone knows what should be checked and that's where proper follow up clinics are valuable. Also, having access to a dietician whenever I need one is also invaluable and necessary for some especially if they develop another autoimmune condition or food intolerance.

    It is a personal choice but I feel quite strongly that people should not self diagnose since their symptoms could be something else altogether.

  • I feel very strongly that no one should self diagnose anything unless it is a last resort.

    You wouldn't self diagnose any other autoimmune disease and then self medicate which is essentially what not having the tests equals.

    That is just one point though.

    My main qualm with self diagnosis, and there are many, is the risk of unseen complications and related conditions. This comes from personal experience. When I was diagnosed, they found polyps on my bowel. These polyps could very well have been cancer and had to be removed and tested, and I was told that had I not been diagnosed they would have almost certainly been the precursor for bowel cancer.

    That is not a risk I think it is sensible to take.

  • I would go for diagnosis as once diagnosed you are in the system and there are no if's or buts. And you can always ask your GP to refer you to the Gastro.

    Your biggest obstacle will be the gluten challenge as you have to have gluten for 6 to 8 weeks and you may find this difficult. But the end result is worth it for many reasons.

    There are other members of GFG who have been on a gluten challenge so you will be in good company and able to get support from here. And once it's over it's dome and dusted so you will have peace of mind.

    That's my 2p's worth.

  • I would say go for diagnosis but I'm guessing from your username that you were born in 1975, so be aware that your age may well mean that you just get fobbed off with IBS medication without any testing at all (ask me how I know!)

  • Hi all, thank you for your opinions, you have given me much to think about. I feel the overiding feeling is to get a diagnosis, but maybe secure life insurance first?!

    I am currently on the gluten challenge. I have been only 6 weeks gluten free (I read labels and have done it as well as poss) and am having my blood test on 20th Sept so am consuming gluten, a 'normal' diet, until then which will total 2 weeks. I am not in any pain at all which has suprised me as I was quite ill before i stopped the gluten. I do have other undesirable effects though :/

    My GP said i didn't have to do the gluten challenge but may get a false negative, that I only had to eat gluten over one weekend. I decided to do it for the whole 2 weeks before my test, just in case.

    I am really scared of the endosope and of being diagnosed and having to have B12 shots for life.

    The reason I will still do it despite being scared is that I do have other symptoms coming on, pain in bones, tingling in hands and feet etc.

  • 2 weeks will not be long enough for gluten to be in your system for any testing except for the gene test which really is only a marker to say you might develop coeliac disease. You need to be on a full diet with as much gluten as you can cope with for at least 6 weeks. I don't know why there are so many docs out there who are lacking in this knowledge...it's dreadful.

    20odd years ago I was told that 2 weeks was long enough..it wasn't and I had false negative results..2 years later with intestines now in holes, my hair falling out and my skin coming off along with the wonderful bowel habits of an undiagnosed coeliac i did get my diagnosis.

    Call coeliac UK and have a chat with them about being diagnosed.

    The endoscopy isn't that bad. I had a sedative and would happily have another tomorrow.

    Good luck x

  • This worries me, I told the GP I'd read on the internet about needing to go back to eating gluten for at least 6 weeks before the test and he said it wasn't necessary but I may get a false negative so if I wanted I could just eat a normal diet over a weekend and take the test on Monday.

    I am doing the test after just 2 weeks but if it is negativeand I am still feeling poorly I will hassle the Dr to retest me after 6 weeks.

    So far the gluten challenge hasn't been too bad. I am on day 4 and had the runs and wind for 3 days and today I am constipated windy and bloated but I really did expect it to be much worse. I wonder if the 6 weeks of gluten free before the challenge healed me enough that the symptoms aren't too bad btu will get worse as the damage increases?

  • Personally, if you can, I'd rearrange the test. That way you won't risk the false negative or have hassle from the doc about doing it again. If you would like me to, I could download you some info from coeliac UK about being tested that you could take to your docs. By going for it after 2 weeks you could then have to wait months before getting a retest and then you'd also have longer to worry about it. Let me know if I can help. x

  • Thank you, it has crossed my mind about waiting a bit longer for the test. Any info you could give would be gratefully received, thanks. I have read lots on the site but am not a member so not sure if there is more info for members.

  • I'll go on there in the morning and see what I can find x

  • and yes gfmum1, apparently I've had IBS my whole adult life!!

    The cancer bit does scare me too and ultimately it scares me enough to go ahead with the tests.

  • Sounds like haing the biopsy would be a weight off your mind, so I would say go for it.

    Another benefit is the yearly bloods you will get after diagnosis, which check for reactions to gluten and a whole lot more. They have kept me aware of other health issues.

    I've been coeliac for 12 years but never had low Iron or Ferretin, it's not a given with coeliac! A bit of spinach will do the world of good! The endoscope is what it is. It's not the nicest experience, but the diagnosis for me was so worth it.

    Good luck whatever you decide!

  • I would say at least have a blood test. The chances are that with a blood test hopefully it may determine whether you are a coeliac. If you don't want to have any further invasive testing after that then it will be entirely up to you. Your doctor will (or most do) discuss options after the results of your blood test.

    Whatever you decide to do, you will get support here and there are people who have taken all kinds of decisions regarding the various tests and options.

    Assuming that you may have a positive blood test you will then be on their books as a coeliac. This is important, as further down the line it means that the Health Service has knowledge of your condition so your medicines for any illness must be free from gluten. As well as this, it will mean that they will be aware of anything that they should be checking for and taking into consideration when you are seen for other medical reasons.

    Regarding the support after diagnosis - it is probably wise to ask for referral to a dietician if it isn't offerred and anything else that you may feel the need for - but always remember you can ask for further appointments. Being diagnosed positive, when it happens, is quite a shock even if you don't think it will be. It is also emotional - difficult to believe that some foods that you really enjoy can never be eaten again. Trying to find ways of producing something similar in your own kitchen or finding something without gluten that is even a little bit similar on the supermarket shelves.

    Good luck with your test or tests if you choose to have it or them! x

  • Thank you, I think I have pretty much headed towards having the tests but I am a bit confused, can you be diagnosed just from the blood test or only after the endoscope?

  • The endoscopy will give you a definite diagnosis and is relatively hassle free. I think I would rather be tested so as to cut down on the side risks of untreated coeliac disease.

  • Hi,

    If it's the endoscopy that's putting you off then I don't think that is enough of a reason to knowingly ignore your potential illness.

    If you opt for the sedation option then it's over before you even know its started, the only draw back is no driving ( or the usual operating heavy machinery ! ) for 24 hours which can be a pain. I had throat spray last time and whilst it was uncomfortable it wasn't bad at all.

    I say don't ignore it and the other potential problems such as bones, deficiencies etc. I have calcium supplement and vitamin D but I think B12 injections aren't the norm so again don't worry to much about that.

    It must be better to know than not!

  • I feel that self-diagnosis is not to be recommended really, but have to say that being diagnosed by endoscopic examination has been the most awful experience of my life. As a well balanced type 1 diabetic with a very stable weight for over 46 years I now never know what my bs will be, how I will feel, how to deal with the high and low bloods, etc. I suppose if gives some peace of mind knowing, but not at all simple and prescription food is very, very limited.

  • Hi Everald, if your blood sugar levels are all over the place on a gf diet, there are many members on GFG who are also diabetic's so I'd ask if they had a similar experience to you and ask how they keep their BS levels stable. So my attitude would be that if you could keep your BS levels stable before diagnosis then you can without having collapsed villi. So I urge you to pursue this as you have nothing to lose and lots to gain. And GFG is a support forum.

    I also hate being prodded and poked about so to me an endoscopy was a means to an end and I have had follow up ones, always with sedation. But I have the satisfaction of being diagnosed and the satisfaction of knowing that my villi has recovered.

  • Thank you Jerry. The whole year has been a nightmare as far as I am concerned, 60 years as a type 1 diabetic and then 22 as (so I was told|) IBS were simple compared to gf. I am getting better at balance now, but the combination of having to try and do gf high in the Pennine hills when the nearest shop of any size is about 25 miles away, very low income, a husband that has recently had a heart attack and 98 year old mother who is still in her own home but loosing her memory is not a good combination by any standards. I am just so, so tired and weary of the whole thing I fear! Thanks for your interest

  • Hi Everald well I am sorry that you feel like this but you do have lots going on and in different spheres of your life by the sounds of it. Like money husband and mother so it's all happened at once for you so I am not surprised that you feel tired.

    In my opinion we have to take comfort and strength from what we do have and you live in a very beautiful part of the country I've seen Wainwrights walks on TV. Also if we buy fresh fruit and vegetables they are not expensive so we can eat well. You also still have your mum and your husband even though they must be hard work sometimes.

    I think that you have to get your self and your BS levels sorted and then you might find that you can take things in your stride. So I think that instead of constantly worrying about those around you, you need time and space to your self in your busy day. Ironically all of you would benefit from this as you'd be more relaxed and less stressed.

    Lastly you've already proved that you can look after your family so you need to reassure yourself that you can do it and enjoy what you do have. This is not meant patronisingly as we all have stress in our lives me included the secret is how we deal with them.

    All the best,

  • Jerry with thanks.

  • Hi I agree with Ian that the fear of the endsoscopy is not enough to stop you from being diagnosed, so just ask for sedation, which's only a higher dose of the local anaesthetic.

    And to me by the very question that you ask you want to know for sure.

    We have members who stopped ingesting gluten and felt better and they are not prepared to put their bodies through a gluten challenge and this is their prerogative.

  • I sometimes daydream that life would be much better if I had never visited the doctor in the first place and never got diagnosed. However, I always come back down to earth and realise how lucky I am. A bone density scan shortly after diagnosis showed I had slight osteoporosis. After three years of taking Calcium and Alendronic acid my bone density is almost back to normal.

    I no longer suffer from what I thought was IBS.

    I am convinced it is better to know the truth and face the reality, so I would say go and get diagnosed. I wish now that I'd seen a doctor about the 'IBS' problem 15 years ago.

    I shouldn't have left it so long.

    Regarding the 'intrusive' endoscopy I can only say that mine was not an unpleasant experience. Because I got the spitroast treatment I had the sedative injection. I was conscious and able to see the damage to my gut on the screen. There were no after effects apart from not being able to drive home.

    Think of this procedure as being like a 'coming of age' ceremony. If only there were a party (gluten free!) for newly diagnosed coeliacs, now that would be something.

    Instead of a gluten free party I got a quick chat with the gastroenterologist and a few leaflets including one for Coeliac UK.

    The more of us who get diagnosed, the more effect we can have in improving our lot. Strength in numbers.

    Unity is strength.

  • Don't let the endoscopy put you off. I had one (for pernicious anaemia not coeliac but presumably not very different) and the waiting and thinking about it was far worse than the actual procedure.

    I ended up having it without sedation and at the most it was uncomfortable, and I'm a fairly anxious person and had been quite scared beforehand. The nurses were nice and kept making me laugh. If you choose to have it with sedation you just won't know anything about it.

    And regular B12 injections aren't so bad - you just get used to it. If you need them you'll really look forward to them! And you may well not need them.

    I'd definitely get diagnosed if possible. The only test I took was negative and I was already gluten free so I've never trusted it, and I really regret not pushing harder. If you don't get a diagnosis it gets more difficult as time goes on as your version of what's going on for you and the GP's version diverge.

  • My tests were normal ....& was told to eat a ...normal... diet...I was only too happy to eat bread ...my health deteriorated so badley ...heart failure ...& all sorts of debilitating problems I am 100% gluten free & my health is getting better & better...It's all about ...inflammation ...& is primarily a neurological problem & is the number 1 test for osteoporosis. There is no real functional support in the system... But the system loves a diognosis...great info at thedr.com gluten world

  • Thank you everyone.

    I will definately have the blood tests on the 20th Sept and see what they say. I will have been on gluten for 2 weeks by then so hope I don't get a false negative. If it is then suggested I need an endoscope I'll re-read all these messages to remind why it is a good idea! I still feel conflicted but I know what needs doing.

  • The endoscope is not a problem, it is the imagination before which is the problem!!! if you really are worried have the sedation--- the spin off from a proper diagnoses is that you will get the bone scans, iron checks, immunisations to protect your spleen ( and something else-cant remember).

    do not hold your breath for good gp backup or good tasting food,, but if you were thinking of being Gf without diagnoses you will already be prepared to pay for the better stuff anyway.

    I am quite pathetic when it comes to pain and discomfort and did not need sedation,,, make sure you let the technologist know your wishes -awake/sedate --they do not want delays so will facilitate your choices.

  • I have to say I agree with everyone, it is very useful to have the biopsy by endoscope so you get good follow up annually. I did have sedation so no real problems

  • I got my results today, no indication that I have Coeliacs. Also, much to my relief, my calcium and iron levels are fine. The only thing that came back was high thyroid levels, 6.68, I wasn't even looking at that!

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