Awaiting hospital consultation but really suffering. How can I get through 2 more weeks of HELL?

Blood test positive so been referred to hospital. Got appointment in 2 weeks but the last 7 have been hell. Been advised to continue eating gluten but last night was pure hell. Woke at 12:30 pm approx 6 hrs after eating a steak slice with agonising cramps which eventually led to diarrhea for 4 hrs! I am so unhappy at the thought I am doing this to myself but have to continue. Anyone offer any tips or advice that can get me through as I am sure the biopsy appointment will probably take a couple of weeks too. Just exhausted, frustrated and utterly fed up so appreciate ANYTHING right now. Thanks

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  • Hiya,

    You've gone this far, so keep hanging on in there for now. IT IS a mentally and physically tough process (I remember saying it would be!) but hopefully it will be worthwhile in the end. I do feel for you though, I remember how rough and drained I felt. You're right - i think the exhaustion is the worst thing. I don't have a three year old to care for; instead I was trying to hold down quite a responsible full-time job when I was going through the same process. I too found the waiting you are experiencing very frustrating.

    The Gastro consultant I saw seemed to think that GPs have the power to directly request an endoscopy rather than just an initial Gastro consultant assessment. My GP did not know about this option; however yours might - so it might be worth talking to them again to see if this kind of support is available to you in your area.

    At the very least, as you are feeling so poorly it might be worth making your GP aware of how ill you are feeling and getting them to check if any cancellation slots have come up.

    Of course you do have the option of cancelling all the tests and giving up gluten today if you wanted to. However it's not something I would recommend because you are getting so close to that appointment and would miss out on all the proper answers as well as any ongoing support that followed.

    In the meantime try not to let yourself get too dehydrated. Try to drink some isotonic type fluids if you can. Dehydration can make the exhaustion worse when you have a bad tummy.

    Good luck!

  • Thank you. Yes you have summed up pretty much how I feel right now. I was thinking initially that I probably haven't got CD but as the weeks have passed I am more aware of how ill I really feel. Had gluten again today (my only meal in 24hrs) and 3 hrs later doubled up in pain and in urgent need of the loo. Once I had answered the call of nature pain went completely. Does this sound like gluten intolerance to you? Starting to worry its something more!

    Have drank lots of water and managed an ice lolly before but nothing else but feeling a bit better.

  • Hi Bluenosegill,

    Sounds quite likely! I think everyone reacts slightly differently to gluten, although we share many of the same symptoms. I get a left side stomachache and bloating initially, then around 5am the bathroom suddenly becomes my favourite room in the house. The fatigue and brain fog are just the added bonuses! If I'm lucky the dashing to the loo only lasts a couple of hours. When I was eating gluten, I would then often have a reprieve through the day (until the next night any ways)...

    Do drink plenty of water, but also try and make sure that you have other things like tea, squash and fruit juice, as I said before it will hopefully replace some of the body salts and minerals you have lost. I went through a stage when I found the probiotic yoghurt drinks quite good as well, they seemed to calm my stomach a little.

    I would also suggest you keep eating your favourite foods with gluten in them. It will help you understand how bad they make you feel. You are then less likely to fall off the wagon in future because you will remember how badly you react to them. I miss not being able to have a chunky KitKat or a shop bought doughnut. I made my peace with them during the same period you are in now - so no way would I knowingly eat them again!

  • Regalbirdy makes lots of really good points around hydration, probiotics and electrolytes.

    Now that you have had a positive blood test, you are in a maintenance phase, where you don't want the damage which has occurred to start healing, but you don't need to cause too much more. If you can't face whole meals, how about putting horlicks in a chocolate/banana milk shake to make a chocolate malt? Or having a pint of Guinness, if you like it, with some crisps with gluten-based flavouring? You could alternate smaller amounts on one day with a gluten-based meal on the next.

    I would emphasise the suggestion of only eating gluten containing foods that you really like. When I did a gluten challenge earlier this year, I made a bucket list of all the gluten foods that I had missed in the years of being gluten free before. i steadily ate through the list over the course of the few weeks. Being able to eat things I liked really helped keep me motivated but also served as a reminder of the pain involved in being swayed from a gluten free diet in the future.

  • Advice noted: had Pizza yesterday and had a doughnut before. Never want pizza again! The doughnut was delicious but if the past few days are anything I expect it will cause a similar reaction! Feeling more positive today as I had my first full nights sleep this week and woke pain free. :-) Just a little perplexed by all this as nobody seems to appreciate what it's like unless you've been there. So your comments really do mean a lot. My GP didn't say 'yes, you've got CD' but she told me its highly likely. Suppose I just want answers now and then I came make this hell stop.

  • Pizzas are great.... if they are the ones that are gluten-free that is! Remember the phase you are in is a temporary thing and there will be life after gluten (an easier one hopefully).

    My GP said the exact same thing to me when I got my positive blood test results. They don't like committing themselves until you have been seen by a specialist.

    I am glad that you have had a slightly better day. You are a day closer now... keep hanging in there!

  • Well done 'saying good-bye' to favourite gluten foods is the way to go.

    I forgot ryvita! But enjoyed last Guinnesses and still miss them.

    Find it a niusance that calamari in restaurants are mostly only available battered.

    My GP was excellent and blood test was arranged quickly and she was able to say she thought it very likely I had CD and I was given an appointment for my endo within 4-5 weeks. No gastro consultant first; talking later to my practice nurse she said that our local health authority had a protocol of all tummy/diarrhoea queries had to have the blood test at once in order to confirm/rule out CD from the beginning. I was quite flabbergasted by the diagnosis; for prob 30+ years but symptoms down to other causes and never discussed them with GP's.

    So good luck for the last few weeks; then enjoy your recovery and the disappearance of symptoms you never thought were to do with CD!!

  • Thanks. I'm praying I don't have a long wait for the endo. Part of me thinks this is just a mistake (good days) but when I have a run of horrible days I'm convinced I have it as all the symptoms make sense. Just want to feel well again as I'm running low on energy, patience etc. This waiting is not helping.

  • I really feel for you, I was in the same place a few years ago. Looking back now I wish I'd just been a pain and harassed the doctors to bring both the gastro's initial appt and biopsy appt forward. A bloke I met couldn't stand it any longer so he paid for it. It's a barbaric system but at the moment it is all there is.

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