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Does this sound like Coeliacs?

Posted , 9 users are following.

vickya
vickya

Hi

Just some advice regarding symtoms as I seem to be going round in circles with my GP and wondering whether to request a coeliac screen.

I've had IBS for 10 years, can't remember what tests I had when that was diagnosed, but don't think it was anything much. My bowels have always been an issue, cumulating in the formation of an anal fissure, and an anal polyp which was removed when I had botox into the fissure (which did bugger all by the way!)

For the past 6 months I've had:

Near constant nausea, worse in the mornings, about 1 hour after eating and on an empty stomach

Vomitting regularly, about once or twice a week, no foods in particular seem to trigger this

Upper abdo bloating

General upper abdo pain

Increased frequency and looseness of bowels

Increased belching

Increased acid reflux (now on 40mg omeprazole a day to no avail)

Not had any weight loss, which in a way is a shame as I am overweight. No real weight gain recently either though.

I have tried half heartedly cutting out gluten in the past but it hasnt seemed to help, but frankly there is gluten everywhere so I probably didnt fully cut it out.

Does this sound at all typical of coeliacs? Do you think its worth me persuing further tests for this? I've had a gastroscopy denied as apparently I'm too young for it! (31), so I'm not getting a diagnosis this way.

Thanks for any advice.

2 likes, 15 replies

15 Replies

  • nori641
    nori641 vickya

    Posted

    Hi friend

    Most digestive disorders like your case come from intake food.

    my advice is as i did :Eat prepareed food at home kichen containing

    organic meat (lamb,cow,chikckin ) and vegetable both cooked or not cooked

    and peeled apple only for 6 months. Starting  beter after one month.

    My best wishes

  • misswoosie
    misswoosie vickya

    Posted

    Sounds like it might be your gall bladder.You say you're overweight. Are you middle-aged as well?😊. Do you get any pain in your left shoulder? Try and see if you get problems after fatty things. Are your palms red at all? Other things I might think of would be H pylori infection. Has GP done bloods for liver function? 
    • vickya
      vickya misswoosie

      Posted

      Should have said, I've had an abdo ultrasound which has shown my gall bladder is fine, that was my GPs first thought, though the pain I get is generally lower than the gallbladder anyway. Ive had an hpylori test which was negative, but i was on omeprazole at the time which I've read can cause a false negative. LFTs were also fine, though the scan did show a slight fatty liver. 

      Regarding the middle aged bit, it depend what you count as middle age, I'd say I'm early middle age (31). ;-)

    • misswoosie
      misswoosie vickya

      Posted

      Lol, I don't think you're middle aged, I think you're young!

      Don't think the fatty liver is significant. Has GP suggested re-testing without Omeprazole? Of course sounds like comimg off the Omeprazole might be a nightmare for you.They really do make me laugh " too young for a gastroscopy". My confidence in the NHS dwindles by the day. I can't get my GP to do anything except check my BP and write a script, and she even argued about that as the tablets I had been on for 6 years were more expensive.  I don't know what to suggest. Endoscopy privately? That's how I got my bloods done.

    • vickya
      vickya misswoosie

      Posted

      Thanks for that, I know I am young but some days with this I do feel pretty middle aged!! He hasnt suggested retesting without the omeprazole , I dont even think he knows that makes a difference! If I hit a dead end with everything else I might raise it again. He's generally quite good, and was quite happy to refer me for the gastroscopy, it was the hospital that was the problem! I think if they continue to reject it I'll ask him to try another hospital. I considered private but then I looked at the price and not really sure I can afford that sadly...
  • jessica54683
    jessica54683 vickya

    Posted

    Hello,

    I'm 25 (overweight & battling other health conditions - under active thyroid & rheumatoid arthritis) and for the last 6 months I've struggled when eating food. Within 15-20 minutes of eating I've wanted to be sick and would be in crippling agony!! I've been to the doctors numerous times and had lots of tests done! I like yourself have been given omeprazole to try and also a slightly stronger kind of Lansoprazole! Neither of them worked in the slightest for me!!

    They've had be in for a scan on my gall bladder and everything is as it should be! It was only after seeing the nurse that I decided to give a weeks food diary a go! I'm going completely gluten free to see how it goes! I'm only on to day 2 but already noticing that I haven't had the usual pain/discomfort!!

    I've had all the symptoms you've been getting and my doctor is currently testing me for coeliac disease!! I personally think you've got nothing to lose asking for the tests!!

    Hope this helps!!

    • michelle_34992
      michelle_34992 jessica54683

      Posted

      You really need to be off the omeprazole for at least 2 weeks before you test for h pylori this is really important it does cause a high false negative if you are on omeprazole or ranitidine within 2 weeks of teat I've read the studies. It sounds like it could be h pylori.

    • jessica54683
      jessica54683 michelle_34992

      Posted

      yeah the doc didnt state that so the results have come back with issues, safe to say im not happy!! I've done a week gluten free and oh my god the difference is unreal! i've had gluten free products in place of the usual pasta etc and i've not had a single bit of bother with food but as soon as i try food containing gluten my body reacts and i immediately have to get rid of it! 

    • vickya
      vickya jessica54683

      Posted

      Sorry to hear all your problems too, It's so frustrating when everything physically seems to be normal on scans etc. I've started keeping a food diary but nothing seems to persistantly make me feel sick or cause me to be sick, so not sure its helping. It doesnt seem to relate to gluten through that. I've pushed for the blood test for coeliacs now, which has come back normal, which is good, but now i'm starting to think it's all just in my head! My hpylori test was negative, but like you i'm suspicious that I was not told to stop omeprazole first, but I have has some feedback saying as it was a fecal test this doesnt tend to get as effected, so again probably just paranoid! From my doctors point of view now though its all now being blamed on my weight having excluded obvious physical causes, which seems to be the default thing to blame, and I'm sure it would help if I lost weight, but damned if I know how! His suggestion was weight watchers, because evidently he believes dieting has never crossed my mind because I'm that thick..... I'm starting to loose a bit through just not being able to eat as much without it making me vomit of feel very nauseous, so there we go, that might help! 

      Glad the gluten free diet is helping you, did you get the coeliac test results back? Even if its normal if the gluten free diet helps maybe it is an intollerance that just doesnt hit the coeliacs threshold. 

    • jessica54683
      jessica54683 vickya

      Posted

      I got the blood tests back as negative however my doctor wants to check by doing an endoscopy as i have such a reaction when having gluten in my diet!

      If those results come back negative I'll just keep doing the gluten free diet & just let the GP get on with it! It feels like my doctor doesn't believe there's something wrong even though when I tell any other doctor they pretty much said its a definite 😢😢

      Hope you get sorted soon

      Jessica x

  • elleng
    elleng vickya

    Posted

    Hi

    I've read your thread with interest as I've had problems with access to tests via the NHS too. Over a period of 10 yrs I had 3 biopsies (first 2 negative) and it was only a DNA test that I got via the USA that convinced by my to allow me to have another. I wasn't actually eating much gluten on the first two as I didn't know! The first two were done privately too so I wouldn't advise going down that road. Keep doing your own research and asking your GP to help. I'm angry that my body is a mess after so long and mentally I struggle to eat lots of foods because it took so long to be diagnosed. 

    All the best

  • IHaveAHunch
    IHaveAHunch vickya

    Posted

    Hi.  I found out I was celiac about 18 months after having a gallbladder episode (stone stuck in common bile duct).  I'd been having regular vomitting after eating, constant diarrhoea, bloating (which I didn't pick up on at the time as I'm overweight anyway) and stabbing pain on occasion in the thoracic region.  My symptoms were quite similar to what you describe.  I went GF after the coeliac diagnosis and have been feeling well since.  I have a hunch that I no longer have any gallstones, although I haven't had a scan to prove this.  I always wondered if my gallstones were in part due to my bile sitting there never getting to work on food as I just 'pushed' it out as soon as I ate because of the coeliac disease.

  • vickya
    vickya

    Posted

    Hi, thanks for your replys, It's good to hear other peoples stories. I managed to convince my GP to do tests for coeliacs, which have come back as negative, I've also had an ultrasound scan which has not shown any issues (no gallstones etc etc), so good, but still doesnt explain what is going on.

    I'm now waiting for an appointment with a gastro doctor to see what they can recommend. I've kept a food diary and can't see that anything specific triggers my symptoms, but over 2 months down the line from being referred I'm still waiting, still feeling naueous and vomitting regularly, feeling constantly bloated and getting increasing levels of pain on my right side, though its a bit too low and central to be gallbladder, so I frankly havent got a clue what is going on with me!!! On the plus side though I have lost a bit of weight, nothing extreme, 5kg over the past 2 months, but sadly that hasnt helped my symptoms.

    • michelle_34992
      michelle_34992 vickya

      Posted

      I had almost all symptoms of coeliac but my test came back negative. My GP wants me to try a gluten free diet anyway as he thinks it could be a wheat or gluten intolerance. So I'm trying it for a month.

  • marg04364
    marg04364 vickya

    Posted

    Sometimes blood tests give a false negative.  You need to have gastroscopy to make sure it is not coeliac disease.  And you need to be eating gluten (at least 4 serves a day.. equivalent to 4 slices bread ) for at least 6 weeks beforehand.

     

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